Why do you love your pump? We asked listeners to give us short reviews of the systems they use. This is sort of a companion piece to our last episode – when we went through how to choose a pump (click here to listen). That was more about process. We talked about how you can’t make a bad or wrong choice, and this episode really bears that out.

Spoiler – every pump has big fans.

Check out Stacey's new book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

Episode Transcription

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, and by Dexcom take control of your diabetes and live life to the fullest with Dexcom. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

 

Announcer  0:22

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:28

Welcome to a bonus episode of Diabetes Connections. We're going to talk about why we love the insulin pumps we use, or really you use. I asked listeners to give me short reviews of the systems they love. And I cannot thank you enough for sending these in. This is sort of a companion piece to our last episode, we went through in detail best practices of choosing a pump, right not which pump but that was really more about process. You know you really cannot make a wrong choice here. This episode really bears that out and might be a disappointment to some of you I'm sorry to say but spoiler alert here. Every pump has big fans.

I asked in our Diabetes Connections Facebook group who loves their systems, what do you love about it? Then I had one adult with type one and one parent of a child with type one to chime in on each pump system. So these are pump systems that are available in the United States. There are only three pump companies right now, Medtronic, Tandem and Insulet making pumps that are available in the United States. I decided no DIY for this because people who use DIY systems generally know enough and educate themselves enough about their options. And their options are different, right? So these are the commercially available pump systems and they're actually for all of them. the very latest, which I didn't expect and didn't ask for, but it turns out everybody who chimed in, is using the up to the minute latest system as we are recording here in the middle of July of 2020.

If it sounds like these folks are reading, they probably are. These aren't actors, as they say they're real people. They weren't actually interviews. I just asked them to send me the audio. I gave them a little bit of a prompt, and then said, just send me some short stuff. Some people are a little shorter. Some people are a little longer, but I think you're going to get the idea pretty quickly.

Let's start with Medtronic. And both of these folks are using the 670G system.

 

Shelby  2:30

Hello, I'm Shelby from Elizabeth City, North Carolina. My daughter Caroline was diagnosed with Type One Diabetes on Thanksgiving Day. 2017. And she's now 10 and a half years old and thriving with a Medtronic 670G insulin pump. We got this pump shortly after her diagnosis in January 2018. I love the automated feature that adjusts the basal rates either up or down based on how Her blood glucose is trending. The pump is waterproof, which is great, since we do a lot of swimming in the summer. And if we're going to have extra activity, we can tell the pump to set a temp target which helps keep her from going low. The CGMs the continuous glucose monitor that works with the pump does not have a share or follow feature at this time. But we found a do it yourself workaround called Nightscout, which in my opinion is superior to the typical share follow function on other CGMs systems. I'm definitely excited about the new upgrades that Medtronic is coming out with, but for right now we're very happy with the overall control that she has with her blood glucose with very little need for micromanaging on my part or her part. So that is my thoughts on the 670G

 

 

Phyllis 3:54

Hi, I'm Phyllis. I'm from the greater Boston area and Massachusetts. I've been living with diabetes for over 40 years and have been using the Medtronic Minimed 670G system for about three and a half years. Originally, I really was interested in the 670G because of auto mode. Although to be honest, I wasn't sure that the system could do better than I could with managing my diabetes. But I was pleasantly surprised. One of the areas that I was really looking forward to with some help is around exercise and the systems built in temp target of 150 really took the guesswork out of my workouts. So now three and a half years later, my time and range is generally about 85% with minimal effort when I put a little bit more time and pay attention to what I'm doing and eating that easily bumps up to 90% and that equals average A1C of about 6.2, 6.3 for the last three and a half years. I feel better about everything. I physically feel better and really excited about this system.

 

Stacey Simms  5:06

Next up is Tandem. And both of these listeners, just like with Medtronic are using the latest model. They're using a tslim X2 with Control IQ.

 

Chris Wilson  5:16

Hi, this is Chris from San Diego, California. I've had type one for almost 23 years and I've used a pump for five of those years. I use a Tandem tslim X2 with control IQ. I started with the original tslim upgraded to the X2 when it was released. And I've been through three major pump software updates in that time. The thing I like most about the pump is Control IQ, which is Tandem’s advanced hybrid closed loop software. I was initially drawn to the tslim by the touchscreen user interface and the rechargeable battery. The only thing I'd improve is the cartridge fill process which is a little complicated but gets easier with practice.

 

Beth  5:50

Hi, I'm Beth and I live near Denver, Colorado. Our six year old has had Type One Diabetes for three and a half years. She started on an insulin pump six weeks after diagnosis And has been on a Tandem tslim for approximately a year. She's been on Tandem tslim with Control IQ for seven months. We love that it communicates with her Dexcom CGM and gives her more or less insulin as needed. The exercise mode is great for bike riding and swim practice and the touchscreen is simple enough for her to operate herself. She loves that her blood sugar and trend arrows are visible directly on the pump. With Control IQ. My husband and I have had the most uninterrupted sleep since before our daughter's diagnosis. We couldn't be happier for this technology. This pump is the best choice for our family.

 

Stacey Simms  6:34

And finally, the people who are using the Omnipod dash system.

 

Lynette  6:39

Hi my name is Lynette and I live in the Atlanta area. My son was diagnosed with type one two years ago yesterday and we have been on a pump since October of last year. We started on Omnipod the biggest reason he chose Omnipod was because he did not want a tail as he said, or tubing. We went with the tubeless pump we love that it's waterproof we love that he can shower in it believe that he we can do smaller amounts than you can with pens because he tends to need smaller amounts than half units. We love just everything about it. To be really honest, our only major complaint is that it tends to come off on pool days and we've tried lots of different options for keeping it stuck and so far we haven't found something that works. But other than that we're super happy with our Omnipod dash system.

 

Sondra  7:30

Thanks. Hi, this is Sondra and I live in Tacoma, Washington. I was diagnosed with type one in 2006 when I was 57 years old. I did MDI for a year got the Dexcom in 2007 and still struggled with random overnight low lows in 2008. I started using the Insulet Omnipod. I chose tubeless as I had struggled with sleep since menopause, being able to have a very low basal rate overnight has helped me so much with my nighttime lows dialing in basal rate It says made managing my type one much simpler. I love being able to do watersports and not worry about being unplugged from basal insulin. I'm looking forward to the Omnipod five which will create a closed loop with my Dexcom six. I'm hoping the FDA approval for the Omnipod five and Tidepool Loop come soon.

 

Announcer  8:23

Your listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  8:29

Thank you so much for sending those in. Isn't it interesting that it's pretty easy to find people who love whatever system that they're using? I didn't have to hunt high and low I put an ask in the Facebook group and found a whole bunch of people. In fact, I had to cut off the comments. We had so many people who wanted to say how much they loved the system that they use!

Of course, there are personal factors and preferences that come into play. So just like we said in the previous episode, you got to see these systems you got to hold them in your hand. And I do think you need to know also as you listen and you we've assumed this but just in case, all six of those folks are using a system, not just a pump, so they're using a continuous glucose monitor.

In the case of Tandems tslim, they're using the Dexcom. Same thing with Insulet Omnipod, they're using the Dexcom. With the Medtronic 670G, they're using the Guardian sensor three, which is a Medtronic sensor. It's actually the only one with the same company. The other two are separate companies with working agreements.

You can use an insulin pump without a CGM. We did it for almost seven years. Between the ages of two and nine. My son Benny did not use a continuous glucose monitor but he did get an insulin pump six months into it, at age two and a half. He just used a pump and certainly you can use it that way as well. We now use, as you likely know, if you listen, we use the Tandem system we have the X2 with the Control IQ software. We've had that since January. Benny wears a Dexcom CGM and we love it. I think it's a fabulous system. There are aspects about it that he really enjoys and prefers that you know, friends of his don't feel the same way about.

I’ll lay it out here, I've said it before. What he likes about the tslim is that he doesn't have to have an external controller. There's no PDM for it as there is with the Omnipod. He likes that it's flatter on the body. And he absolutely loves the Control IQ software, which has not only lowered his A1C significantly, it's done it with less work from him and less nagging from me, although he still argues that I may like him too much. I mean, come on, man. But he's 15. I guess that's his job.

I will say though, in all fairness and knowing what I know about the diabetes community and the technology that's out there, a lot of people feel very differently, right? There are a lot of people who prefer the flexibility of sticking an Omnipod anywhere they want on their body. They don't care about schlepping a PDM. They like that. It's waterproof. They like that they can remote bolus their kid. That's a big deal. We talked about that last week.

And for Medtronic, people, there's a lot of people who like that it's all in one (note: I mean that it’s all one company. There is no “all in one” CGM/Pump device). They like that. They don't have to go to different companies, and they like that their doctor may be more familiar with it.

Is there a downside to every system? Sure, I went through a couple of pros and cons there. But it does come down to personal preference, I am going to link up a lot more information about these systems and what's coming. Unless something really bonkers happens. And you know, the delays from COVID, or something really goes wrong. They're all on track to be controlled by phone, if not by the middle of next year, then in the next couple of years. And once that happens, and you get true remote bolusing for all of these systems, then it's really going to be personal preference. I mean, once that happens, it's going to be absolutely amazing. But you cannot buy today on promises of tomorrow.

You know that it is of course worth noting that podcast listeners are more educated and have more money than the population overall, not just in diabetes, not just for this show. That's really just podcasting. So it's not really a big surprise to me that we easily found six people using the latest and greatest. Of course, there is so much to talk about in the diabetes community when it comes to access and affordability and insurance and affording the insulin that needs to go into these pumps. So I don't gloss over that. We've talked about that many, many times before and will continue to do so. But this particular episode, I hope is helpful in seeing what people think about the technology that is out there right now. There really is no one answer.

I'm going to tell you one quick story before I let you go here. And I'm sorry, I apologize in advance to all of my rep friends, the reps for all of these companies are just like everybody else. There's wonderful ones, and there's people in it for the money. And you have to be careful about claims. And I'm not singling anybody out. I'm not singling any company out. This happens here, there and everywhere. But I was at a conference years ago, and I went over to one of the booths just to check out and see when I go to all the booths see what's going on. And the rep for this pump company said to me, if you switch to our pump, I guarantee your son's A1C will come down half a point I asked him about that. And he gave me some cockamamie answer. If I tell you more about it, you'll know the pump company. So I don't want to go into it. But I mean, it was really a stretch. But if I had been a newer diagnosed family, I think I would have been very much influenced by that. I asked him if he had any literature and studies to back up his claims, and he did not. But he said he would email me something, I gave him all of my information. Of course, I never heard from him again, the idea that switching technology can lower your a one c by a certain point, and that's why you should switch. That's a tough one. I just said that control IQ dropped my son's A1C significantly, right. But you know what? It's the whole story of him. It's not just that pump system. If we were new to pumping, if we didn't have the settings right, if he didn't know how to, you know, do certain things if he was going through a phase or something where he didn't want to do anything. If he wasn't having success with the CGM if he was getting a rash if it wasn't working For him, if it was falling off, if the pump wasn't comfortable, if it wasn't the pump he chose, and he didn't want to use it, there's a lot of things that can happen there.

Pumps are not a panacea. And anybody who tells you that they are.. I want to be careful what I say here. But let's just say they may not have your best interest at heart. So my good guy reps, and there are so many of them. And we have one who is amazing, and I love and is one of our heroes in the diabetes community. I'm sorry for that. But I think it's really important that people understand it's just like the endocrinologist who says, I'm only going to learn this system. So you can't have a separate pump, because I don't want to learn another system. Right, man, we got to fight for so much in this community.

I hope this helped. If you have any more reviews or questions about pumps jump into Diabetes Connections, the group will have an ongoing discussion there. And I kind of hope this helps you think a little bit more critically when you see these discussions in other Facebook groups, but let me know what you think. And I will link up in this episode a whole bunch of guides from different And organizations who've done really good work comparing the technology that's out there pro and con, and please go back and listen to the previous episode about how to choose a pump if you haven't already. thank you as always to my editor John Bukenas from audio editing solutions and thank you for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Benny  15:24

Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged

 

“What insulin pump should we get?” is a really common question. But it isn’t the right question, at least to start. We're turning that around into, “If I want a pump, how should I choose one?” After all, every pump out there has devoted fans, which tells you there isn't a bad or wrong choice. Stacey is joined by long-time diabetes advocate Melissa Lee and together they lay out what adults and parents of kids with type 1 need to think about.

This show discusses insulin pumps available in the US, but the ideas and conversation can be applied to any make and model pump on the market.

If you like this episode you might want to listen to this one as well: In "Why I Love My Insulin Pump" we hear from listeners who love the system they use. All three commercial systems available in the US are represented in that episode.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Check out Stacey's new book: The World's Worst Diabetes Mom!

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

-----

Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
-----

Get the App and listen to Diabetes Connections wherever you go!

Click here for iPhone      Click here for Android

DiabetesWise

Pump Comparisons from Integrated Diabetes Services 

Episode Transcription:

Stacey Simms 0:00
Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.

Announcer 0:16
This is Diabetes Connections with Stacey Simms.

Stacey Simms 0:22
This week. What insulin pump should I get? You know what? That's not really the right question. You have to start with, if I want a pump, how should I choose one? After all, every pump out there has devoted fans

Melissa Lee 0:32
And what that means is that there's not a bad option. There are certainly options that might have a specific feature or style or might fit in with your lifestyle better, but there's not a bad option.

Stacey Simms 0:44
That's longtime diabetes advocate Melissa Lee, she's talked about this issue for years. And together we lay out what adults with type one and parents of kids with type one need to think about. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider. Welcome to another week of Diabetes Connections. I'm so glad to have you along. I am your host, Stacey Simms. And if you are new to the show, because you heard about us or saw me at Friends for Life, the virtual conference that happened last week, I am thrilled to have you here. What a great conference that was, oh, my goodness, I hope you had a chance to participate. They had so many more people because instead of being you know, in person in July in Orlando, unfortunately, they had to go online like everything else this summer. But the plus side of that was that so many more people could participate and learn about Friends for Life and learn about this community that we've been so fortunate to be a part of for many years. Now. This isn't an episode about that. I won't talk too much about it. I hope you've followed along on social media. And please reach out if you'd like to learn more. I'm really looking forward of course, to getting back to in person appearances, but I think Friends for Life has really set the gold standard on how to do these events virtually. It was really well done.
I've wanted to do an episode about choosing an insulin pump for a while I did one way back when, and I can link it up in the comments, but you have to know if you go back to it that it's pretty dated, but it was going through all of the options at that time. And I've realized since then, that it's really not about which pump, right, it's about choosing the pump. But I know that you want to know more about the different kinds of pumps and which one people think is best. So I'm putting out a separate episode in just a few days with what I'm calling true believers, people who love the insulin pumps that they're using right now. And that episode will have a little bit more editorial to it. This week, though, I want to talk about process, you know, beyond tubes or no tubes. There is so much more to it than that. If you even want to switch to a pump at all, which you know, you don't have to do I hope this episode clears some things up and gives you tools that you can use going forward as you make these decisions.
Diabetes Connections is Brought to you by One Drop and getting diabetes supplies, you know, pumps, supplies, meter supplies, whatever you're looking at. It's a pain not only the ordering and the picking up but also the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They offer personalized test strip plants. Plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about. not that surprising when you learn that the founder of One Drop lives with type one they just get One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach learn more go to Diabetes dash connections dot com and click on the One Drop logo.
My guest this week is always terrific to talk to in fact I just had her on the show a few weeks ago. Melissa Lee is a longtime blogger and patient advocate dogs goes with type 1 diabetes at age 10. She is known for her extensive knowledge of diabetes technology and her role as a leader in the diabetes online community. She was the former tech editor of a sweet life. And that's where I first saw our technology reviews. She also did it on her personal blog, sweetly voiced and she'll talk about that she led diabetes hands foundation as its executive director before serving as Big Foot biomedical’s Director of Community Relations. And right now she's leading clinical training content development at tide pool. So Melissa has worn a lot of hats and she is very careful as she speaks to let us know which hat she is wearing. But I saw Melissa do a technology presentation years ago and I thought Yes, we've got to have her on the show for this. Before we jump in. I gotta let you know. We do talk about insurance and your medical provider and stuff that may seem boring in the beginning here, but it really is important. I mean, who's gonna pay for this right? What's your provider going to talk to you about? These are things we have to really get into if you are here for tubes or no tubes skip ahead to about 20 minutes in when we do talk about, you know, active kids and active adults and tubes and pumps and the nitty-gritty of what you have to carry with you. But really don't skip those first 20 minutes. I really do think these are topics that maybe aren't talked about in those Facebook groups when we're talking about pumps, but they are so important. All right, here we go. Melissa, thank you for jumping on. I'm really looking forward to this conversation. I feel like I learned something every time I talk to you. Thanks for being here.

Melissa Lee 5:31
And I will thank you so much for the invitation and for touching on this topic that so many people have questions about.

Stacey Simms 5:37
One of the reasons I wanted to talk to you, in addition to knowing you've done this presentation is to know that you have used a lot of different pumps, like a dozen different kinds of pumps. Is that mostly to get the experience from how do you do that?

Melissa Lee 5:50
Oh, well, that's it's a very good story. So I got my first pump. I was 20 years old, it was the year 2000. And there were only one or two options on the market now. I went with the one that my doctor said, well, all my patients are on this one. And it was a Medtronic, I followed a very traditional pathway, I think that many of your listeners probably follow, which is I got a pump from a company, when they released a new version or a new software upgrade, I upgraded. And I went through that process three or four times. And I stayed on Medtronic pumps for nearly eight years. And they served me very well. But what I also didn't do during that time was, you know, I was in my 20s. First of all, I wasn't watching the market to see what else was developing. And I would start to hear in my late 20s Oh, you know, there's some other options. I was married to Well, you've had us both on the show, married to a technology guy who is an early adopter of many technologies and, and I really have to, I mean, in so many ways, I credit Kevin with a lot of things, but my husband Kevin said if you want to try something else, like your warranties up if you want to try something else, and you don't like it, that's okay, like let's see what else is out there. There, and suddenly I had this. First of all, I had a husband, who had more income than I've had as a single teacher, but he, you know, we had good insurance and I could say, Okay, my warranties, I'm just going to see what else there is.
Now the sidebar of that conversation is that through that I found Amy Tenderich’s really amazing piece about this is this open letter to Steve Jobs that she was written about the state of technology and that launched my entire entree into the online world of diabetes, which is a whole other story, right? You know, going and finding out Okay, so what else is out there? And so I looked at some pumps that were available at the time this would have been on 2008 I looked at the Cosmo and the Animas ping was just coming to market and so I looked at these options and I started to bravely try something new and with every time you try something new, there's this anxiety about like, Oh, God, am I gonna like this thing? You know, I've had eight years As Medtronic paradigm pump in my, under my belt, and that was what I knew was something else going to be good.
[And from there, I like once you make the jump once you get a little bit more bold in like, Well, okay, I didn't die. I liked. I like things about this experience that I like things about my first experience. So again, what else is out there? And then I began to, to write up reviews of these things for other users to read, like many of us do now that I was one of the first bloggers to be writing about some of these products like I was on my blog that is now sort of frozen in time, but like so many bloggers, I would write it about, this is what I liked about it. This is what my expectations were, this is what I didn't like about it. I would reach out to the sales reps into the company is to be like, Well, I have a question about this. And so then as I began to review, more of these pumps, fast forward, maybe four or five years, then pump companies were reaching out to me to be like Like, Hey, will you try our thing and tell us what you think of it? Would you like to do a two week trial of it? Would you like to wear it for 30 days? And, you know, I was never in a position like some folks, I was never a paid spokesperson for a pump. I was not someone who was given free pump supplies for using the product or anything. But I did get experiences with these devices. And yeah, I've worn something like a dozen pumps from six companies over the years.

Stacey Simms 9:26
My story, which is really Benny's story about picking his pump way back when it's similar to yours in that I went to our care team and said, I have a two-year-old, we'd like an insulin pump. How do we choose? You know, what do we even do and at this point in 2007, as we knew there were a few more choices back then, which is kind of sad to think about, but I let our educator kind of guide us in terms of and I said I really did say this give me the idiot-proof one that works the best, right? I just need the one that a dummy can use and clip onto a two-year-old and that will also work well for him. We went and looked and held and touched everything and decided on the Animus 2020, which then became the Animus Ping. And we went from there. But we really leaned on our educator. And I'm glad in a way that I didn't have the amount of, I guess we'll call it anecdotal support that there is right now. Because if bring this question to a Facebook group. Let's face it, you're gonna get a lot of bands for certain brands. So if the question then becomes not which pump do I use? Because we all have our personal biases, but how do I choose? You already mentioned you had a change of insurance? You had a better situation than you'd had before? Let's start there. Let's talk about insurance. Because not every insurer covers everything.

Melissa Lee 10:44
Yeah, absolutely. And it's such an important point. And it's one that we as patients and particularly if you're in patient advocacy, like I have been, it can make you angry, but at the same time, you said something important. Every pump has its fan base, as well as its detractors. And I would say by enlarge, the fan base is huge compared to the number of detractors for every single pump product on the market. And what that means is that there's not a bad option. There are certainly options that might have, you know, a specific feature or style or bike fit in with your lifestyle better, but there's not a bad option. And I firmly believe that what that helps with is the if your insurance does not cover your first choice, it's important to note that the price differential between paying out of pocket for these really high touch high tech and expensive technologies, it is probably worth it for most people to consider that if my insurance will support my use of my second or third choice. I will be in a better position to be successful on this than if I have to pay out of pocket. For my first choice, and if you have the wherewithal financially to support your use of your first choice, and it's not on insurance then by all means, get your prescription for it and proceed. But I think that the majority of people fall into, I'm going to need support from an insurance payer to pay to support my use of this product. And that is not just the product, but also the supplies going forward. You know, if you have a situation where you have your first choice pump is maybe only available through your medical benefit through the durable medical equipment benefit, and you have a terrible plan that has only you know, 50% or less coverage of your durable medical equipment, then you might consider the choice that you could get through your pharmacy benefit because maybe for you on your insurance plan, your pharmacy benefit will cover 100% or 90%. And so, as much as we as particularly in the US value this I want to be able to choose my therapy, there's a reality of the cost I think it's really important to be able to say my insurance covers this pump, and this pump. And so I'm going to choose my best option from those.

Stacey Simms 13:09
And I would jump in and say 100% agree with that, that is worth a phone call for you. I know it's a pain. I mean, we all hate dealing with the insurance companies, but it really is worth calling and double checking this yourself. We love our reps. We love our healthcare teams, but I had boy Benny’s been on an insulin pump for 13 years and there was one time when everybody assured me it was okay. And it was not and if I had called myself and gone through those hoops which think I would have realized so it's worth calling that to double check as much of a pain that it is

Melissa Lee 13:42
well you know, and you bring up an important point because you say call myself call who you know many of us start with calling our insurance company and then we find out that they don't even do the representative you may be talking to from your insurance company covers deals with a lot of therapies and benefits and you say insulin pump and they may be actually looking at the wrong thing, or they may have the wrong information. If you have identified I want a product from company A call Company A, because Company A actually has every single company Dexcom, Medtronic, Tandem, Insulet. They all have people that are dedicated to what's called verification of benefits. And as soon as you give some information to these companies in terms of, here's who I am, you don't even necessarily need the prescription before they verify this, you can be doing that in parallel, because of course, you will need a prescription for whatever you choose. But they can be looking at your insurance plan. And they have experts on the inside who are able to look this up and say, Oh, well, actually, you could get it but we're going to have to order it from this other company that's closer to you because you have a thing that says you have to order within 50 miles of your zip code or Oh, we can get it but we can actually get it through the pharmacy channel. And so they can actually they have experts who do this and they have a vested interest in getting you on their product. So they're going to work really hard to find that out

Stacey Simms 15:00
I think back to my experience, right starting that insulin pump with Benny and I needed my care team so much. I know everybody has peer groups now and online support. But I needed a device that my care team knew how to operate. And while sometimes that limits you, I do think it's really important. I guess we can talk about the flip side of that. But let's start by talking about that question of what does my healthcare team have experience with why that important to you?

Melissa Lee 15:27
Well, and I do want to talk about the flip side of that as well, because I've challenged it several times. But on the one hand, your clinicians office is probably already set up with a representative for that, for that product they use, they probably already have the software installed for that product they use, they probably already understand how to both read and analyze the data that comes off of those devices, how to change the settings, how to troubleshoot with you, as well as how to also seek their own reimbursement for it because the time that They spend evaluating the data is actually part of their fee schedule. So I do think it can be a benefit to you both in getting you on the device faster getting you on boarded to the device more smoothly, because they already have a process in place, and they have a comfort level of supporting you with it.
The flip side is, I remember when I was living in North Texas and I had this amazing endocrinologist who would just let me run out and try whatever I wanted, and she'd absorb the cost of like, whatever new software she was going to have to install, she would let me be a guinea pig. What that also meant is that if I had a bad experience on something that soured her for the rest of, you know, her patient base. If I had a good experience, without overprescribed, I felt a lot of responsibility there. But at the same time, she said she would go to conferences, and she'd be sitting at a table with nine other clinicians, and nine of them had only heard of one insulin pump brand. And so by that same token, you if you're out here As a patient or a caregiver, and you're doing your own research on what your options are, you may have done the right research to find the right thing for you, and your insurance will cover it. And you know, you want it and you bring it to your caretaker or to your clinician, who says, Ah, you know, sorry, I'm an all XYZ shop. And you actually may need to advocate for Will you let me try it? What are your concerns about it?
And, you know, we see that especially, and Stacy, you've done so many podcasts about the DIY movement and do it yourself. You know, there are certainly clinicians who haven't heard of those options. And you may actually find yourself having to make a case for why you can be trusted to try this thing that they don't have experience with. And there also may be the case where they say, Listen, I can't absorb the liability of that or I can't buy the new software that would go with that. I remember, I was the first person in my clinicians office to try the insulin pump from isanti back when they were are around and my doctor's office had to buy a whole new piece of hardware to get the data off of my device. Like that's an expense that I'm asking my clinicians office to absorb for one patient out of thousands. So yes, find out what your clinician has familiarity with. They may have also anecdotal, good stories and bad stories about like, Oh, well, I had great success when so and so got on that, but also, it's okay. If they haven't, there are ways to convince them to consider allowing you to try this.

Stacey Simms 18:32
I wonder, too. I mean, right now, there's only unless I'm wrong. There's only three commercially available insulin pumps in the United States. Right. So three brands, okay. That is correct. So there's only three brands and we still hear about endocrinologist, and I think it's mostly adult endos. But we still hear some pediatric just anecdotally, who are, I'm only this guy. I'm only going to look at that stuff. And it can be hard I think for a parent of a young child or a young adult. Who's not used to advocating for themselves to say you? Well, I want this other one. I'm curious Lissa, someone who has advocated very well for herself. What do you do in those cases? I mean, I know what I would say. We're pretty outspoken people.

Melissa Lee 19:13
We are and many, many books have been written about sort of the paternalism of the medical community and how it can feel like what the doctor says goes and I don't want to challenge that I don't feel comfortable. When I'm like, half-naked with a paper gown sitting on butcher paper, do I really feel like fighting right now with somebody in a lab coat with a stethoscope and like a kid but there may be an increase to ask of you, in order to prove yourself to this clinician about this and in terms of Do you have blood sugar logs to give them Do you have CGM data to give them Can they see the data they would need to know that they can prescribe this product that is new to them and they would get insights Back to know whether they made a good choice for you. Do you have the kind of relationship with them or like, Listen, I'll schedule an extra phone call with you, I will prove, you know, I have this great literature I could send you and I've known people to sort of print off white papers and drag them into a, you know, a clinical paper, really, from a research journal and be like, Look, look, it's a valid option for my situation. And the same holds true for if you know, especially for parents who might want off label use, like maybe your child is below the indicated age, or there's some reason why, you know, same holds true if you're a person with type one and you want to take a drug that's indicated only for type two and how do you make that case often there is an ask of you that is, am I going to be able to give my glucose data and my maintenance and management visibility to this clinician so that they will prescribe this in a way that doesn't reflect poorly on them. And if they can feel like okay, I will have the information I need on this. And I would also say it's important to note that it's actually likely a minority of people with type one who were treated in these facilities where they even prescribed these products, right. So let's say you're treated by a general practitioner, and maybe they've heard of an insulin pump before, but maybe they don't even know what the brands are. And so you're going to need to be able to put something in front of them that allows them to feel confident in prescribing,

Stacey Simms 21:30
I was going to definitely talk about documentation, because we've already mentioned Facebook groups, I would not recommend the Facebook group printout to bring to your endo, that's not going to do it. And you laugh, but I know I know, sometimes that's the end. It's sometimes the best information. I mean, sometimes it's the worst information, but sometimes it's really good. But what I would recommend is, you know, find that diabetes forecast article that talks about all the pumps that are available, find the, you know, the diabetes minds to find the different comparisons that are out there, and I'll link up A few In this episode, you have to stay current on it because things are changing. But articles like that documentation. research articles, as you mentioned can be really helpful because then they have some meat. It's not just me going in and saying I heard about this cool thing. I want it for my son because it has a blah, blah, blah. You know, now I'm really backed up.

Melissa Lee 22:17
There are a couple of resources to use. Yes, absolutely. Like the diabetes forecast, diabetes, mind diatribe like where they've written about these products. But there's also a really cool, fairly new website that some behavioral health researchers out of Stanford like Cory hood, and the Helmsley Charitable Trust in New York City put together it's called diabetes wise.org. And you can go in and sort of say like, what am I looking for? What are my options? What's out there? How do I choose and so some of this is actually on diabetes wise, and I think they've done a really nice job. I think they plan to do more with it, but I really like what they have so far. And then as well, you can go each of the websites for instance, we said in the US it's Medtronic Tandem and Insulet each of those websites has a provider version of the website for your healthcare provider where they could go and get information as well. And you could give them that URL.

Stacey Simms 23:11
So let's start talking a little bit more about, you know, we were at this esoteric level and then just kind of dial it in a little bit more. Because, you know, the questions that I see the most are, you know, what would you recommend for an active three year old? You don't like there's no, I mean, that makes me laugh all the time. Because I don't know any three year old who's not super active and running around. So I always want to say what's the best pump for a chilled out? Relax three year old. Let's talk about type of pump. I always think that somebody should really think about how they will wear an insulin pump. And I do think you don't know until you do it, what you might like or what you don't like. But I mean, let's just talk about tubing for a moment because I personally feel and I've never worn insulin pumps. So I am a parent. I am not a person with diabetes. I feel like this seems to be much more of an issue than it actually is for most people, and that there are pros and cons of both, that most people don't think about at all. I mean, my son, gosh, was two years old when he started a tube pump bonkers kid, you know, super active, did tons of activities, and I would say probably got his tubing caught, you know, once in a while, just as much as his friend with a pod got his pod knocked off the first month that he was wearing it. But to me the tubing, I don't know, there's other things to think about. There's, you know, where on the body, you're gonna wear it, how much real estate it takes up, you know, that's why you have to kind of look at this stuff. And also, I'm getting in the weeds here, Melissa, but when you have a pump without tubing, right now, with the commercial availability, you need a separate controller. So these are all things to think about.

Melissa Lee 24:47
Such an important point I don't think people have ever I'll say honestly, I don't think people have ever believed me that tube versus no tube doesn't really matter. And what I will say is that That's a yes and. And to some people, it very much matters. And you know what, even if that is only in their perception of it, I absolutely grant that that is an important perception. What I will say is that there are what I often describe as, so I started I was on a tubed pump for nine years, then I was on a tubeless pump for three years. And I was on a tubed pump for two years that I was on a tubeless a year and like, so I've done both, right. And, you know, I think the folks at Insulet are fantastic, but I remember early on this is more than 10 years ago and me going to them and be like, Well, why is your pump great? And they're like it's tubeless and I'm like what else and they like it has no tube. You know, give me I'm okay with the tube. So give me another value props and now of course they have fantastic value propositions and they market that much better, but, you know, no dig on them. But the fact of the matter is, is that we wear glasses, wedding rings, wristwatches, smartwatches, earrings, there are many things we have To our bodies, that the first time you wear them, you're like, Okay, I'm so aware of this thing that I'm wearing. And then over time you feel naked without it, right? You know, you look down, you're like, I just I knew something was off, I'm not wearing my ring, or I'm not wearing my watch today. And a tube on an insulin pump is very much like that. And there are athletes in every sport, wearing every brand of pump available today. And so I don't believe that how active you are, should necessarily dictate whether you go tubed or tubeless route. I think that it's more about your perception of tubing and there is a real negative connotation about what it means to sort of, quote be hooked up to something like and so for if you are someone who can't like who that is a mental hurdle for your body awareness or for thinking about your child than great, you have a tubeless option, but what I would not ever say is that Having a tube is somehow limiting. Because like you say, there's the other side of that coin of, you know, if I'm wearing my tube pump, and I don't have my controller nearby, do I have access to do all the things I want to do? Or you know, the same thing, like just having the tubeless option make me feel like I'm freer or like, I don't have something attached to me, or does having the tube option make me feel like it's a lower profile, and I can tuck the thing away in my pocket. It's like, for many people, it's more about what your personal comfort level is. There is definitely not a huge difference in lifestyle, between a tube and a tubeless. And I think you and I are really aligned with that.

Stacey Simms 27:43
I would also add, we've said tubing and if you are listening and you have used the word or heard the word wire, instead of tubing, I do think it's an important difference, because to me, it's not a wire and wires are something completely different. And I do think that that's a really Interesting. I don't know how that started. I don't know if somebody's way back when I thought it was a wire, but it's a tube. It's a very thin plastic tube that if you're my son, you can swing your pump from Please don't do that. Why do you do that? You know, or it's it's but it's very thin, it doesn't conduct electricity. It's not a wire. So I just kind of want to get that out.

Melissa Lee 28:20
That that makes me think one of my favorite comedians Chelsea Reiss talks about he has a joke about the bedroom and getting a cot and a ceiling fan and having it swinging around. It's hilarious. I'll just leave that considering I don't know how general your user or your listener,

Stacey Simms 28:36
I appreciate that. I appreciate that. But

Melissa Lee 28:38
Yeah, so you know, there are things to think about many people when I was 20. And so my endocrinologist in the late 90s started pushing me to get a pump and I want to say that very clearly. I was pressured to get a pump. And he would say, well, all my type ones are on a pump. And I would say, Well, what does that do for me like That's good for you. Why do I have to fall in line? And for me, I thought it for about two years. And then I was in college and I met a girl with an insulin pump. And I suddenly found that I had this series of questions that I never would have asked my older male endocrinologist in his role. They were questions like, Well, how do you sleep with it? And what do you do with it when you're naked? And when you go to the bathroom? Like, do you have to move the tube out of the way? Like, how does that work? And do you lay on it? And does it hurt your back and like all of these questions that I needed to ask someone else who actually lived with it? So that's where I think our groups online things like Facebook and Instagram, where you can actually see what people's lifestyles are? and answer the question, you know, and short answers for everybody is you just deal with it. Like you just move it out of the way if you lay on it and it's uncomfortable, you roll over, you know, you toss it in the bed next to you, you unplug for a bit like there's lots of answers to lots of those questions but for me, but the important part was, I was being pressured to use one If I needed to speak to someone who knew what it was like to actually use it, and that was the trigger for me as soon as I met her, and I saw what her life was like, I was like, Oh, I can do this, this is no problem.

Stacey Simms 30:11
And we're going to get to the answer of I don't want to use a pump. And that that's okay. Let's talk about that. I'm gonna make a note. We'll talk about that quote towards the end of this, but to kind of flip around the tubing question. One of the other questions I think people need to address in terms of like, how they live or how they plan to use a pump, what they think about a pump is thinking about the remote bolusing and the remote operation of the insulin pump. Because I gotta say, Man, I missed that animus Ping. Now my son is 15. So I don't do as much with him. I mean, I never quote bolus him anymore. I mean, he does everything himself with our support. But there is something to having a toddler and not having to go over to them and take the pump out of the belt or out of the pocket and being able to just dose from across the room. Now I know and we should also talk about this, we should talk about future technology and processes and what's to come. But I think it's a really important thing to consider. Can you do it and be just fine? Yeah, Benny had a regular old pump that we had to touch from ages two to almost six, because that very first pump we had for four years was the animus 2020, no remote. So we bolused him in his car seat, and you know, in bed and did all that stuff. But when he was six, when we did get the remote meter, it was very freeing. And I have to say, I really liked having that. I'm glad we can, again, it's coming for the different pumps in the future. So I'm glad about that. But I think we do have to focus on what's available now. I thought we solicited an adult, I think of something like that. I mean, in terms of taking the pump out or wanting to remote bolus,

Melissa Lee 31:45
Yeah, that's huge. You know, when I was working for Bigfoot biomedical, we were doing some market research in social media where we asked people like where do you wear your pump and a lot of people reported I wear it clipped to my underwear, I wear it inside my skirt and wear it in a bra. And it was a significant population wasn't majority, but there are plenty of people who prefer to keep a device tucked away whether for their own personal discretion and their job, or maybe safety, you know, maybe they're likely to get tubing or a pod knocked out. And so I think that there were a lot of women for instance, who preferred who really liked the Animus ping and struggled with the decision to move up to the Animas vibe because the loss of that remote bolusing One of the things that I think is, you mentioned future technologies, and with full disclosure, I currently work for tide pool and tide pool is working on a product and development that would allow you to remotely bolus from your phone like so I need to fully disclose that that is literally what I work on for my day job. That you know, I think several things have happened both the Animus product and then which was commercially available, and then In many of these DIY solutions, and then of course Insulet Omnipod with the PDM, the personal diabetes manager that allows you to, to bolus, we've seen that there is a market need per se, as was we'd say in marketing, like there's a hunger for people to want to bolus with more discretion. And, you know, for those who aren't comfortable, let's deliver a dose of insulin at once, with this feature. And so these things are coming, you know, tandem diabetes just released an app that in future iterations they plan to include some degree of remote control. Insulet is of course iterating on their devices that allow for this, and Medtronic has put forward pipeline goals that they plan to get there and so and there are many products and development and products outside the US that allow for that remote bolusing like outside the US diableloop has that as well.
importantly though, and you said it, we have to base our decisions on what is available now and one of the things that I say With love in my heart for every sales rep I've ever worked for is never trust a sales rep. To tell you how soon something is coming. I remember so many adequate so many cases where people have been promised the next gen of whatever it is they use for going on 5,6,7 years. Oh, it's coming next spring, it's coming next spring. And the thing is, unless they can show you where they already submitted it for FDA review, it is more than a year away, right? And so and even then it might sit with the FDA for additional review for a longer period. And so unless there's a launch date, choose from what's available now. You can we get locked into this idea of like God, if I make a decision, I'm making this for the next four or even five years because of the warranty. Yes, you are, but you can't base it, on hope and dreams. You have to say if I'm getting one today, these are my options. And I can guarantee you that if there's a new option a month from now there will be at Upgrade pathway for you. But there is, you know, in many of these, all three of the companies that have stuff available today in the US have trade in options. And it might be, you know, you might not get the full value of the products with your trading, but I don't believe that you're stuck forever with the thing you chose. And we worry so much about buyer's remorse. Like if I get this thing, and then the thing I really wanted comes out in two months, I'm gonna be so miserable, and there's a pathway to get you to where you want to go. I believe that.

Stacey Simms 35:29
Another question I think people need to think about is, again, my perspective is as a parent, but it's what do I carry on a daily basis? You know, if I'm on multiple daily injections, or I'm using a particular insulin pump, what do I already schlep around with me and am I willing to carry more or do I want to carry less and I see this not as a good parent who makes her child take full diabetes stock with him everywhere he goes, but as the terrible parent that I am, that lets him run out of the house just with His Dexcom His pump and some hopefully Smarties or Skittles in his pocket, he would not want to have to carry extra stuff with him. Now, if he goes for an overnight or if he's gone for longer, he's got to take pump supplies, he’s got to take a backup insulin pen, he's got a whole kit. But just in terms of heading out for a little while, or, you know, being the 15-year old that he is he can get away with carrying less with the technology that he has. If you've got a teenage girl who perhaps takes a purse everywhere she goes anyway, that might not be an issue. But I do think it's kind of important to acknowledge that real-world kind of stuff, Melissa, that's one of the questions I urge parents to think about.

Melissa Lee 36:35
I'm smiling so big Stacey, I'm gonna put two hats on okay with my first hat. I work for a medical device software company and I'm writing the instructions for use for a future product and development. And I must say that it's very important to note that anytime you leave your place of residence you should take glucagon glucose tabs, a full meter kit, a backup, backup cartridge or reservoir pod. Some syringes, some insulin, your mother's maiden name like, Yes, I was really you should be prepared. And you know, I love blogger Scott Johnson talks about the caveman who lived and he talks about like, people with diabetes. We are the evolution of the caveman who lived the caveman who came out of the cave in the morning and said what do I need to do today to not die and we're really good, especially parents of kids with type one are so good about planning for the all those eventualities. Now I'm going to take that hat way off and toss it under the bed where it can't hear me and say that the reality is you or your child will find a way to screw this up. No matter what. You give me a pump that has batteries, I'll run them into the ground, you give me a pump that has rechargeable battery, I will forget to recharge it. I will lose the cable you give me a pump that needs to be thrown away at the end of three days and I will let it expire and then go six hours before I remember to change it. So trust in your teenager or your child to mess this up, it's fine, it's going to happen. There's no foolproof way to prepare for all of those individualities. At the same time, like you said, I feel confident leaving the house wearing only my pump and CGM, like I am, which I can look at on my phone. I choose not to carry a meter and a land set and strips and additional insulin. But I mean, I'm sure Benny has stories like this as well, that you know, there have been cases where that bites me, right. And one of my you know, I do music video parodies and one of the ones I did was about being at the office and running out of insulin and not being able to eat lunch until I go home and take care of it like these things happen. And you can just like with diabetes today, you can choose to leave your supplies at home and absorb whatever risk comes along with that. But the nice thing is, is that Yeah, you can wear your pump and leave your home and It continues to just pump along, pump right along with insulin.

Stacey Simms 39:03
But you made a great point, it doesn't matter what brand of pump or type of pump you decide on, you are going to mess it up. And you're going to have situations where it gets a little hairy and nine times out of 10 you're gonna just MacGyver something and be fine, regardless of pump type.

Melissa Lee 39:19
Yeah, you know, for me, I had a situation, you know, I mentioned I was 20 when I started on an insulin pump. And just to give you an idea of what I understood about diabetes as a very bright top of my class, 20 year old I'm just gonna say I was it wasn't completely brain dead. I was brand new to a pump. And I actually, I had, you know, as a musician, I had several gigs booked one after the other at this church where I was going to be singing for the day, and I arrived at 7am and booked until one o'clock, and I looked down and my pumps out of insulin. And I think to myself with my 20 year old brain and my knowledge of diabetes, I thought it should be fine because I used to go hours Between injections. And what I didn't understand was the difference between how a pump delivers insulin and how my long acting insulin that I had taken at the time would have had this undercurrent of coverage for me. And so I get sicker and sicker as the day proceeds. And by about 12:15 I'm standing up in front of, you know, maybe 800 people, and I just collapsed. Just done. My blood sugar was super high, I was out of energy. I was dehydrated, just, I just decided to lay down behind the pipe organ and you just see my feet sticking out the end like I'm the Wicked Witch of the East under the house, right. And, um, you know, the organist pops up off the bench and start singing the Gloria to the congregation of Catholic parishioners and, well, you know, I learned an important lesson that day Stacy. That you know, the fact of the matter is, is that we are going to make mistakes, especially your kids and I am fortunate that I you know, I was not in DC I did not end up at the hospital, and they will learn these things as we go. And as those frontal cortexes start to develop, those things will actually be able to be applicable to how they manage their diabetes.
And I think some people and this is an important point to make about, if you're new to pumps, some people are really afraid. Like, what if it fails? Yeah, it's another device like sometimes my phone doesn't power up like I want to sometimes my household robots don't respond when I say their wake word or whatever. And like, yes, it is another device. And that is why in here and putting my industries hat on, that's why they take a long time to get to market because so many fail-safes are put in so many considerations are made about what the risks to the users are. And that's why you carry backup supplies and that's why you have a backup solutions but at the same time, pumps can provide a lot of benefits for being able to kind of tweak your own care. You know, one of the things I often say in these presentations that I Do on technology is, if you are a pumper, you're actually in the minority of people with diabetes. And even with type one, even insulin users, you're in the minority. And so if you choose not to do it, you're choosing the standard of care, the standard of care is that it's perfectly appropriate. I spent my first 10 years with type one on injections. And that's a perfectly fine way to choose to do it. A pump affords you different options. And for me at age 20, the thing that a pump did most for me, was allowed me to, like choose not to finish a meal or to have seconds or to order dessert after the fact or to graze at a buffet like for me, it was about like, it was just less hassle at meals, and that's how it sort of started. And I liked that and I didn't mind the body image perceptions that it might change. It was that was not an issue for me. But for others it really might be.

Stacey Simms 42:57
I think a good reminder to about pumping is it's nothing surgically implanted. So if you change your mind, it is an expensive brick, you did use your insurance, you did go through a lot. But if you're six months or a year in and it's not what you want, and you prefer multiple daily injections, you can take it off, you can take a pump break, you can do what you've done, perhaps and tried different models, if you can figure out a way either way ensures we were able to switch once for medical necessity, we were able to talk to an endocrinologist and my son was using enormous amounts of insulin. I've talked about this, you know, just what he loves when I talked about puberty when he started into puberty, but he really did use a lot of insulin and the Animus didn't hold enough. And we were able to get coverage to switch to a different pump that held more so you're not always locked in but you're definitely not locked into not going back to shots. And I think that you know that just to make the point that it's okay and shot technology is improving every year. Absolutely. I think it's worth looking at to.

Melissa Lee 43:57
You bring up another important point like we and you said this early on with when you were in your buyers process your customer journey with Benny's first pump. Like, if you have not held that pump in your hand and pressed the buttons, then please do not buy that pump. There are representatives in your area that can meet with you from any of these companies, your CDE, your endocrinologist, somebody has a pump in a drawer somewhere. And you need to know what it's actually like to operate it. You know, for me, and this is a weird thing. And I've never met anybody else who felt this way. But for me, when I was first looking at the animus ping, there was something about the refresh rate of the screen that bothered my eyes. And like that's not something I would have known for their product literature. And I was just like, yeah, you know, it's I don't know, it's weird. I don't, there's something I didn't like about it.

Stacey Simms 44:43
Yeah, important.

Melissa Lee 44:44
But like if I had never pressed the buttons on it, I wouldn't have known. There are pumps that there are people who prefer a color screen or a lighted screen or a screen that's more visible in sunlight. You know, there's just so many things that until you've held the pump played with it. It's, it's like driving a car without a test drive. And this is a big commitment you're making. And I think it's perfectly appropriate to demand that you get that pump in your hand before you order it sight unseen.

Stacey Simms 45:12
We're getting long here, but I don't wanna let you go without asking. You had two points that I think really are wonderful. And that is the question to ask yourself, What do I love about technology you're currently using? and What don't you like about what you're using? Can you kind of touch on how to ask yourself those questions? Oh, absolutely. You know, a lot of people. And I think this is fair to assume when you see people out there, and maybe they're bloggers or influencers, or you've heard their name before something and you assume that they're out there, and they're being paid to promote the thing that they wear and I am not that and I have no problem with that. Like I believe companies should actually seek spokespeople who live their lives with the product and can speak to the experiences they're having. What I am, is a person who has used many of these products and I like to sort of break them apart and say these are the good things and these are the bad things and they all have good things or bad things about them. They've all nailed some features and failed some other ones. And so people approach me and they're like, what pump should I get? And they think I'm going to say you should get the pump I have. And I rarely say that and said, I say, Well, what are you looking for in a pump? What do you love about the thing you use now? And often like if you told me that what you loved about the product you're using now and it was the Animus ping and you're like, I love that I can bolus him when he's under the covers and I don't have to pull this pump out then I would say well then here are your options for that. Like there are DIY things where you can do that there's the Omnipod where you can do that and like those are the things you should go look at. And if you told me what you loved about it was what I really liked the security of a tubed pump because the way he's been able to use it and I like the color screen then I would say oh, you should definitely go look at tandem’s TSlim line because they have those things and so you know, depending on what you like about the thing that you use, look for that feature, specifically In your next thing because you're going to miss it terribly whatever that feature is that you love. And then the same thing. What do you hate about your current system? Like, are there too many lines on the screen? When you scroll through it? Do you hate all the confirmation screens that you have to go through? Do you hate the CGM that it pairs with? Like, what is it that you hate? Okay, we'll look for one of the pumps that actually resolves that and talk to people and find out whether that specific thing that you hate about it resolves it because if I go into a Facebook group, and ask 3000 people what pump should I get? Everybody's gonna say, you should get my pump and then a few people are gonna say, Oh, God, don't get the pump I got I hate it without thinking about what your individual situation is. And so I think it's more a case of we don't know what questions to ask ourselves. And so we just ask it broadly, and the questions are, what am I looking for? What am I looking to resolve? With what currently bugs me? You know, I had a friend reach out to me once and she said, you know, my child uses the Omnipod. And he's having lots of site infections with the canulas. So site changes, he was a very young child site changes have been horrible. And I was thinking about getting this other pump. And I said, Well, tell me about that more. And as she explained it, she was like, well, I thought if I got a pump that didn't have a hardcoded expiration at this 72 or 80-hour mark, that I could leave a site in for longer and go more days in between site changes so that it wasn't so anxiety-inducing for him. And I was like, okay, you just told me your child's having a lot of site infections, leaving a Canula in longer to go longer in between is actually not what you're looking for. Maybe you should stay on what you have. And it would be fine if she went the other direction, but it was what exactly are you trying to solve by changing?

Stacey Simms 48:53
Yeah, when we were looking for a pump, I knew what we were trying to do. Because Benny was fine with shots. I mean, the first two weeks, were called But after that he as long as we didn't stop him from playing or eating, he would like stick his leg out or close arm out. He didn't care at all. And he's ambidextrous, which we learned at this time. So he really didn't care. He was getting like eight shots a day we were on our endo had us on a routine where he could eat whatever he wants, and we just, you know, we bolused after and it was a routine that worked really well for us for six months. But I wanted an insulin pump because he was getting such teeny tiny doses that we were not even close. You cannot measure with your eye, a quarter unit of insulin in a syringe, at least I couldn't. And we were really struggling with big, you know, swings because of the dosing. And working with our endo, they recommended an insulin pump for the flexibility and precision. And that made sense to me. And boy, did it make a big change when we were able to really dial in a quarter of a unit of insulin as a dose for my little guy who's now almost six feet tall. But if you can't answer that question, right, why do you want to get an insulin pump if the answer is because everybody else has one, put it in a drawer, think about it later come back when you really have a need. And I'd also say, Melissa, and this especially for parents is if your child is old enough and old enough means different things to different people, they really have to help decide if not totally decide.

Melissa Lee 50:17
Absolutely, it just absolutely. And I would say, if your child is old enough to talk, they're old enough to have a say in this. And I have two children. So I know how early that starts to happen. But so my children don't have diabetes, and they do take medication for another condition. And the fact that they take medication like that is a constant conversation I have with them about the why and how do you feel about it? And the Do you feel like it's helping you and in these conversations that I think that we are, particularly as parents, we're so quick to want to solve things for our kids. We're like, oh, there's a technology out there and it's better than shots. So I'm gonna put this on them and Your children will do best on a therapy to which you have their buy-in. Like, if you really like that pump a has feature x and feature x is not important to them because feature y on this other pump is so much more like okay, that pump comes in pink and that's what I care about. Like Yeah, the pump that comes in pink, then honor that because again, they're all good options.

Stacey Simms 51:27
That's exactly that's a great point. It comes in pink,

Melissa Lee 51:31
But you know none of them do anymore to like now you have to get like a rubber skin right? Think about it Tandem 670 g like, there was a time you know, 10 years ago, every pump company had five or six colors that would come in and better believe I hate that. I can say that. You better believe that mattered to me. It's like oh, you know, I like purple but I don't like their purple.

Stacey Simms 51:53
But it's important because it is not just something that sort of this way it's important because think about how much stuff we do with our phones, right? We all decorate and put skins and screenshots and pop sockets. It's the same thing with an insulin pump. You know, some people don't care at all. But some people, if I were insulin pump, I would have different things for every day of the week. I mean, I get it. And my son used to care a lot more, we had different skins and he had pink and he had purple and camo. And now like I said, he just got makes me crazy just shoves in this pocket. So let's go from one, one kind of extreme, which is might, you know, pink to another. We mentioned earlier, don't buy anything, don't make decisions on future promises. But I do think it's important to listen to talk about the most recent stuff, and by the time this comes out, something else might have been improved, who knows. But the software, the inner workings of these pumps is changing. And thankfully, it's changing at a pace that we hadn't seen in the previous 10 years. And I think it makes it almost more difficult to figure out what to get right because somebody might really want a tubeless pump, but then they see that and I you know I am guilty of this too talking about how much I Love control IQ, which is only with the Tandem right now. And there's DIY stuff, which, you know, I'm very vocal about this. I love all the DIY people, but we have never used a DIY system. It's not something I'm comfortable with. So what's your advice for people who are just kind of intimidated or thinking about the different software systems now?

Melissa Lee 53:18
Sure. It's such an important question, I think. So it's only been and it's funny to those of us who are in the thick of this, especially myself, I've been in industry now for four years. It five years it's been a while there is this. We're in the very, very infancy stages of automation of insulin dosing. And so for years, this was a promise we were going to get there commercially. And now we have two systems commercially available. We have a third system, the one from Insulet, coming just out of clinical trials, so we can expect that we'll probably see it go to FDA in the near term. So there is this now it's not just get a pump. And a pump is a different way to take insulin, which that was my standard line for many, many years. It's just a different way to take insulin. It’s an electronic syringe. To now it's actually dosing you for you. It's actually it has some degree of intelligence, that is changing your doses, without your say, right. And so now it's like, well, now there's this whole, like, Is it a quality of life upgrade if I get this product? Or now what if I, I don't understand how to read like this algorithm? First of all, what does algorithm mean? And this one has an algorithm that does this, and this one has an algorithm that does this, and I don't know like, it could be green could be purple. I don't know how to, like, I don't know, I don't care, too, which I will say, as someone who has had to write extensive documents about these algorithms and such. I will quote my dear friend, Lane Despereaux, who says all these algorithms work. They're all the same. It's I mean, they're not, but they are. They all work. If it's coming to market, it's been deemed safe to use. And you have, there are tiny, tiny details where if you are the person who cares about those incremental details, you probably are the person who actually understands those incremental details like, you know, how will it drive me to a target glucose? And how do they do it differently from one another. And the fact of the matter is, they both do it. And so the goal of any of these systems is to try to keep you at a glucose level that's safe for you. And they do them differently. But they all do it. They're all fine. And if you are trying to get into the nitty gritty, you're going to hear people's success stories and you're going to hear people's horror stories, but they don't live your life. And there is no one out there who is the exact like copy of who you are with your situation and your child's situation, to know whether or not the experience they have is experience. You're going to have And to that end, you know, your, your doctor may have some information on these, do you really want to go through and read the clinical trial data? Would you understand it? If you did? And what would you actually extract from that that was important to you? And this is one of the things that I see in the sort of, you know, and I love my DIY brother in like, that's a cut my teeth in DIY in many ways, and but like if we're just going to slice up people's algorithms to try to decide which one's going to get you to a 6.5 instead of a 6.6. A1C, like, Is that what you care about? If that is what you care about? Go forth and slice, slice those algorithms read those white papers, that's fine. But what do you actually care about? And when you ask that of people, they're often going to tell you, I care about whether I can think about it less. Right. Okay, so what details about this system are going to tell you whether anything about that lesson or not. And it may be well, you know, my sister's kid has one and she really likes it. Okay, so great. Does your insurance cover it? Go forth? Yep. And that, if I'm trying to choose between a, like a Toyota rav4 and a Honda CRV, like I can get down into the nuts and bolts of the horsepower. And I'm gonna say a lot of words, I don't understand, you're gonna notice I'm maybe, like, what is the torque? I don't even know what torque is. But you know what I mean? Like right? If you're the type of person that cares about that, then great. Do you need to care about that for your insulin pump system? Or just really like the red one?

Stacey Simms 57:29
Like, there's also and there are a lot of people who will choose between those two vehicles on what's the safety rating and how close we live to the dealership? Yeah, right. You know, there's all sorts of different ways to choose these things, knowing that they all work really well. And then you're just talking I think a car is a great analogy.

Melissa Lee 57:45
It is, well you know, you either want that middle row seat or you want the extra cupholders. So which one is most important to you? sign the form and send it away and then don't freak out that you made the wrong decision because all decisions can be unmade. You can always go back to the thing you were doing before, you can always find a way out. And I say that even acknowledging the privilege that I have. And I do want to make that clear, like I have a privilege to be able to afford a different pump. If I, if I really wanted one and whined enough to my husband, he would be like, fine, fine. But the same thing is just like with a car. Okay, so you may have to drive it for a while. It's not the right thing. You can't Well, I can't say you can sell it because it's a prescription medical device. But you know, there are ways through this. And I think we get really caught up on whether or not we're making the right decision. And it may just be that there is not a wrong decision. And whatever you make is likely the right decision for you.

Stacey Simms 58:43
Melissa, thank you so much. We could definitely talk for another hour about this, but I think we've covered at least the first go-round as best we can. But I really appreciate you spending so much time with me. Thank you. It's

Melissa Lee 58:54
always lovely to talk to you, Stacy. And I hope that this can help people. At least take a breath And they'll still post but yeah, but should I get that and that's fine, that's fine. It's okay to ask.

Announcer 59:14
You're listening to Diabetes Connections with Stacey Simms.

Stacey Simms 59:20
I'm so sad to know there aren't pink pumps anymore. I didn't even think about that. It was so important when Benny was little I mean he wanted the blue pump but then we got a bunch of skins and covers that he could change it to whatever he wanted to and Animus had great colors right that was part of their marketing all those that rainbow color scheme of different pumps. Oh my goodness, I guess it you know, you can bring out whatever you want. Any option of pump can be blown out. That's, that's not really what I was going for. Any option of pump on the market right now can be decorated any way you want. Please go ahead and share this episode. Yes, it was a long interview, but there is a transcript. And I do think this is a really important topic. That gets kind of skimmed over when people say, just this pump, or just that pump, or I love this one, or I hate that one, or should I even get a pump, and that bonus episode is coming with those true believers. Those super fans who do love the pumps that they use Diabetes Connections is brought to you by Dexcom. And it is hard to think of something that's changed our diabetes management as much as the Dexcom, share and follow apps. The amazing thing to me is how it helps us talk less about diabetes. It really is so wonderful. It's so great about sharing follow as a caregiver, a parent, a spouse, you know, a friend, whatever, you can help the person with diabetes manage in the way that works for your individual situation. Internet connectivity is required to access Dexcom follow a separate follow app is required. learn more, go to Diabetes connections.com and click on the Dexcom logo.

I mentioned Friends for Life at the beginning of the show, I need to let you know and I've put this in a Facebook group and elsewhere on social media but just so you know, I'm doing a special promo code for the world's worst diabetes mom for my book, if you order it from my website from Diabetes connections.com, use the promo code ffl2020. And you're going to see $4 off the cover price. This is a pretty big discount. I don't think I've done a discount like this. Since we launched the book last summer at Friends for Life. We did a pre-sale a couple of months before the book came out. And this is a big one. So it's $4 off promo code is f f l 2020. Of course, it's always available at Amazon and Barnes and Noble and target. There's an E-book and the paperback book and the audiobook. That's all over the place. But I wanted to make sure to let you know about the discount and the promo code for Friends for Life. All right, bonus episode coming in just a couple of days on those true believers in the pumps that they love and then back to our regular Tuesday drop if all goes well, I'm Stacey Simms. Until then be kind to yourself.

Benny 1:01:59
Diabetes Connections is a production of Stacey Simms Media. All rights reserved. All wrongs avenged.

What's it like to live with a pancreas transplant? And why would you need one? Brandon Mouw was diagnosed with type 1 as a child and lived well with it for many years. He explains what happened to change that, what led to the transplant and how he's doing now, a year and half later.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

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Transcription coming soon!

Stacey Simms 0:00
Brandon, thanks so much for coming on the show. I am so interested to hear your story. Thank you so much.

Brandon Maow 0:08
Thank you for having me. I really appreciate it.

Stacey Simms 0:10
Well, let me start by just asking you, how are you? How are you doing?

Brandon Maow 0:14
This is the best I've ever been in my entire life.

Stacey Simms 0:18
Wow

Brandon Maow 0:19
And I can attribute that to what I've been through. And that has brought me to being able to accept the way things are and just being happy with it.

Stacey Simms 0:31
What an amazing way to start. What a wonderful thing to hear right out of the gate. All right, so let's go back. You were diagnosed with type one when you were very young. I don't suppose at the age of three, you would remember too much, Do you remember anything about your diagnosis?

Brandon Maow 0:46
I remember one very specific thing. And that was when they drew blood for the first time. They took me, my parents took me to the hospital. And they took me back and it was two people and they didn't tell me what was going on this is whatever you call them and tell me what was going on or anything. And I was held down, and they drew blood. And that was like the most traumatic thing I've ever experienced by that time. So that's that's all I remember from it.

Stacey Simms 1:16
Wow. My son was not yet to when he was diagnosed and the same thing happened, but he doesn't remember it. He doesn't remember it, but my daughter does because she was sitting outside the room and she's screaming and what was it? "What are they doing to my brother?" I mean, it's just so hard for little kids. But when you're growing up with diabetes, would you say you had a fairly typical childhood with type one, I mean we're gonna get to what led to the transplant and all of that, but I'm really curious what it was like for you when you were younger?

Brandon Maow 1:44
Yeah, I, my, I would say I had the most normal. I had the most normal, abnormal life you could. I grew up on a chicken Ranch, and it was kind of we were just a self-sustaining family that delivered eggs. To stores and markets throughout Southern California, but the diabetes never stopped me It never defined me it was just if I had a low blood sugar out we test it retreat it we move on. It wasn't. It was I never felt like I was a victim of it. I never felt like it held me back. I played sports, I was always well taken care of. So I never looked at it as anything different than just who I was. It was just a part of me and I just lived with it.

Stacey Simms 2:30
I am so tempted to take this interview and make a huge left turn and talk about growing up on a chicken ranch. I will stop myself but I'm making a note if we have time. We're coming back to that. Did you know anybody else was type one growing up?

Brandon Maow 2:46
No. The first person I met was when I went to a diabetic camp. In third grade. And I was around like 50 other diabetics of all different ages that were young It was like shocking to me. I was like, Oh, you're doing shots. You were testing your blood. You're having a low blood sugar like it was. It was like very eye opening to me because it was I lived kind of out in the middle of nowhere and never saw any other diabetics.

Stacey Simms 3:15
Did you go to that camp after that year?

Brandon Maow 3:18
Yeah, I went two years in a row.

Stacey Simms 3:22
Well, fast forward a little bit. When did you start feeling like your type 1 diabetes was not okay. I'm trying to figure out how to phrase that. But you know, how do you get to a point where a transplant would even be considered? Do you remember when things started to change?

Brandon Maow 3:36
Really, throughout my life? I always had, I think I was just predisposed to hypoglycemia or low blood sugars because I would have low blood sugars just kind of out of nowhere, and they would happen and we would treat them and we would move on like it was no big deal. However, I started having the Hypoglycemia low blood sugar issue, and it was constant every day. And I can attribute it to me having a kidney stone that essentially destroyed my kidney. And it led me to having six surgeries and then having the kidney removed because they could never get it back to functioning. And ever since I had the kidney issue, it was like my insulin, and food wouldn't digest correctly, and the insulin couldn't deliver the energy correctly, and it always turned to hypoglycemia. So that's like the that's the only thing in my life that happened when it changed. And so I attribute it to that

Stacey Simms 4:42
How old are you when that happened?

Brandon Maow 4:45
[I] was 28

Stacey Simms 4:47
I'm curious. Did doctors say anything to you at that time? Did anybody really draw a line from this to that?

Brandon Maow 4:54
No. And that was very frustrating. So I had gone from doctor to doctor saying you know saying look, I have I have this kidney problem. My blood sugars are all out of whack no matter what I just you like my life is I went from this well controlled life and everything was great to me then suddenly have it it was it was like I had control over my diabetes and then all of a sudden diabetes had control over me. And it felt like my power over just living a quality life was just dwindling. And I was searching for answers and no doctors had ever connected the dots. It never really made sense until I went to. I made a bunch of appointments and I went to a doctor and she just walked in the room and she just laid it out. He's like, Look, this is what happened. Your body went into shock it didn't know how to handle it, you can't reset it and that's what gets why you're going to need the transplant or you're going to die. So when that connection was made, it then made sense to everyone else when I explained it to them like, Yeah, that makes sense.

Stacey Simms 6:08
Oh wow. Wow, what kind of doctor was she?

Brandon Maow 6:11
It was an endocrinologist.

Stacey Simms 6:15
Okay, and what were you doing at the time? What kind of work were you in?

Brandon Maow 6:18
What was your like? So I had after the ranch was sold, I went to school. And then I went to more school and I became a teacher, a high school social studies teacher. And then after a few years of doing that, I just didn't, I was bored. I liked the job, but it wasn't challenging enough for me. Because growing up on the farm, you're always busy. You're always fixing a problem. You always have something to do. And being a teacher you have that but but there's like this aspect that that it's always fleeting. You have these students for a short amount of time and then it's going to change over and everything is going to change and you kind of don't have control over anything right now. Never really enjoyed that. So I was like, What else can I do? And I decided to apply to law school just out of nowhere. Why? It was kind of one of those things like why not let me throw a Hail Mary, if I could get in? I'm gonna do it. Let me just let me just try. And I got into law school and I was in my last year of law school when all this started happening.

Stacey Simms 7:27
Were you able to finish?

Brandon Maow 7:28
Yep, I finished with a with bags hanging out of my back to drain my kidneys. Yeah, it was a pretty it was a pretty interesting experience.

Stacey Simms 7:42
Oh, boy. Okay, so you see this endocrinologist? She says, Look, you're young guy. You've been healthy your whole life. But now things have changed to the point where you need a transplant. What do you do next?

Brandon Maow 7:55
It's so it was a huge relief to hear that it was the first time anyone offered me anything of help. Before that every doctor was like, try eating this. Let's try this insulin. Let's try this pump. Let's try this CGM. Let's do that I got a diabetic alert dog. And well they all would tell me I was having low blood sugars, it none of them would help prevent me from having low blood sugars to the point of me passing out to the point of them going to unreadable or like mistake or EMTs having to show up. And so this was the first time I received something that was an answer to the problem that I was having. And so I was really relieved of Okay, now I have something to work on and go off of. And so my my question was, well, what, how does that work? And she just, she just said, Hey, I'm going to refer you to the local transplant hospital, and you have to go from there. But she says, it's very expensive and you're gonna have to beg borrow and steal to get this done. But if you don't, I don't see you living past two years, if not sooner because one low blood sugar will cause you death. And that that was like really powerful for me to hear at that time because I was having so many lows a day. And so I called the transport hospital and I submitted all my information. And then they denied me to even see me as a patient because I would be considered high risk with one kidney. And my hypoglycemia and insurance doesn't cover a pancreas only transplant because it's in in the Affordable Care Act, just about every transplant is covered, which is considered medically necessary. And while a pancreas only transplant is considered medically necessary. It's also considered an optional coverage. So as a insurance company, you're not going to cover something that is optional. And that's when I found out that I would have to come up with the money to pay for the transplant upfront.

Stacey Simms 10:20
I have a really dumb question. So I have heard about a pancreas and kidney transplant. Were you at all a candidate like did you ever think Alright, if they're not going to cover this? Maybe I'll cover if I go bigger. I mean, not want to

Brandon Maow 10:52
Oh, absolutely. So like, doing like doing research and talking and calling and doing everything I possibly could to get this figured out knowing that I'm like a ticking time bomb at this point. My kidney doctor got me into Mayo Clinic and I kept calling Mayo Clinic in Arizona, because that's where that's where I went to law school. At the time, and so I was there and that's where all my doctors were. So it was continuing doctoring there. And he got me into mayo clinic for Oh, what's it called a consultation. And I had to pay upfront for that consultation and all that kind of stuff, but they're the ones that informed me. Okay, so here's the deal with insurances if you were to get any other organ, the pancreas it would just it comes in like it's a tag along if you qualify for any of these organs, you then get a pancreas if you're also a diabetic, so you hear a lot of kidney, pancreas, liver, pancreas. Sometimes, I mean, they've done heart then pancreas, if anything, it can be any other organ plus or afterwards with the pancreas. So that's how that that's how that works.

Stacey Simms 11:53
This is a terrible thing to say. I know you don't know me very well. I apologize for a sense of humor. It's like one of those Amazon add on’s You can't buy it by itself. But yeah, if you go for this, we'll throw it in. I mean, why is that it's so strange,

Brandon Maow 12:08
I guess because they're already doing it and they see the other organ as the more important one because diabetes can be controlled through diet and insulin. So the and the reason why we didn't wait for the kidney because I only have one kidney is that more than likely my one kidney is because I had the other one removed from the kidney stone complications, my one kidney would be fine for the rest of my life. So I would, I wouldn't make it long enough to see if there would be any problem with my kidney. And so the direction from Mayo Clinic, a transplant Hospital, one of the best in the country said you need the pancreas only transplant to live and we also need $250,000 upfront in order to consider you a candidate.

Stacey Simms 13:03
Okay, before we get to raising the money and the procedure, how were you living at the time I have a friend who was part of the islet cell transplant studies years ago because she could not live by herself, right? She couldn't drive she couldn't even walk out of the house. She was having, as you're kind of explaining here, that same kind of completely unpredictable and dangerous hypoglycemia, where it's not I mean, we think about with like, my son, oh, if he's playing sports, he's going to go low, or he might have a weird drop overnight. But I assumed that you couldn't really do anything on your own at that point. If it was so severe.

Brandon Maow 13:34
Yeah, so it it went, it got to a point where I couldn't go to work anymore. It was just, it was just horrible. I couldn't wake up like I think it's hard for people to understand really what like a low blood sugar does. Just in general, especially when it's perpetual. So like low blood sugar takes all of your energy away, meaning that the body burns every ounce of energy, it has to feel the body and your brain start shutting down. And so when you eat sugar or sugar water or you take glucagon, your body then is provided the sugar to start back up only if you can catch it in time. And so every time your brain shuts down, your body starts shutting down. Much like a battery, you have to recharge it and it has to reset and repair itself. But your body's not meant to do that. So after so many times, you start losing the ability to recover. And so the low blood sugars would just be so perpetual, that just even like, going to doctor's appointments, and having to work or making phone calls or to think about things became almost impossible because I had so Many low blood sugars a whole day would go by and I wouldn’t even realize it. And so I ended up having to move in with somebody that would help me and that I could call and that would check on me. And all of that kind of stuff. I stopped working and focused primarily on figuring out what was wrong and and getting myself better, because I didn't have any other option at the time.

Stacey Simms 15:27
So they tell you, it's going to take a quarter of a million dollars. Yep. You're how do you do that? What do you What did you do?

Brandon Maow 15:34
Well, that was a huge blow because I was like, Well, now what? Um, I don't have piles of cash sitting in my bank, like bank account. My my family doesn't have money. And and so I and and before this, all this transplant stuff happened. I was a very private person. You wouldn't know I was a diabetic unless I had told you. I wore my diabetic medical ID bracelet. No one ever asked what it was about, even when I was found by emergency personnel, they didn't even pay attention to it. And so it was pretty private about that kind of stuff. And then it came to this point where I needed to find the money. I didn't know how to get it, who to ask and couldn't take out a loan. I had student loans, I wasn't working. And I could even if I sold everything I owned, I could I would barely have like 15,000. So it was like, what do you do I and I started asking and researching and it's kind of unfortunate because you read all about these sad stories about how many people have tried to raise the money and then they passed away while trying to do it and, and all that kind of stuff. And essentially my roommate who was helping keeping an eye on me and my mom built said at about the same time, look, let's just put your information out there and see what happens. And I was like, Nope, I'm not doing that. I don't want people to feel bad for me. I don't want people to know what I'm going through. This is so embarrassing. I can't believe this happening to me. This is not what I want to be known as in life. I am not I am not a victim. And I kind of broke down and it was like I don't have any other option. And I did and my roommate put together a Go Fund Me. I wrote a letter that we sent out to friends and family that wouldn't know what was going on with me. And nothing really happened. No one called me to ask, you know what is going on what was happening? I did get a phone call from a family member telling me off like how dare I do this. Like I was doing something wrong and then randomly got a check in the mail from from some completely anonymous check, which was enough to get everything started rolling with mayo clinic and when I got that and we were able to post that online, all of a sudden it like opened the floodgates and got the ball rolling and then people started to donate because they saw that what it was going through was real and it was legitimize by somebody who donated money and I and that was pretty like broke every stereotype that I had about people and just not caring and and me putting myself out there and showing myself like being vulnerable and that weakness. It took it kind of took that away and just said you know there are some good people out there not not everybody is bad and out to get me.

Stacey Simms 18:59
Did you ever find After that anonymous donor was?
Brandon Maow 19:01
No

Stacey Simms 19:02
Wow. That's incredible. So you're you're in the system. I mean, we can't go through everything because I'm sure it was a long and complicated road. But how long was it from the time that you were able to say to the Mayo Clinic Okay, I'm in to the point where they called you to say transplant days now.

Brandon Maow 19:21
Two months.

Stacey Simms 19:23
Oh, that's not that long.

Brandon Maow 19:24
No. So the pancreas pancreas only transplant has the shortest waitlist of all transplants.

Stacey Simms 19:32
How does it what happens? Is it like in the movies where they give you the call in the middle of the night, you know, get to the hospital. How does it work?

Brandon Maow 19:40
Yeah, it's, I mean, it is so they tell you like, hey, it's going to be so okay. So I raised the money. I have everything ready to go. People came through like I am just shocked as all get out. It was like, everything opposite happened the way it was supposed to, but It happened because I fought for everything. It wasn't like everyone was like Okay, now we're going to go on to step two It was like no be calling saying, Okay, what is step two?

Stacey Simms 20:10
How do you push during those two months you still have to push and-

Brandon Maow 20:14
I had to push Yeah, and raising the money and it took me three months and all that kind of stuff to get to get everything done. It was me making sure that that connection was always made and that the ball was always rolling because had I not done that nothing would have happened and that's okay. That's that's just the way it is. But yeah, so I get the call. And it's the it was Christmas and. December's are usually when I've always had my surgeries or bad things have happened with the family. So I'm just expecting to get through the holidays and hoping for the new year. I'm like, Oh, the new year is gonna be so great. I might, I might get the call and I get the call and I have a whole Chain of people who are who get the call, I don't answer the call and all that kind of stuff. And I said hello. And on the other line was a lady and she says, Are you ready to get a new pancreas?

Stacey Simms 21:13
It's like Oprah.

Brandon Maow 21:14
Yeah. And I was like, Huh,

Stacey Simms 21:16
the way you said it, I'm sorry I laughed.

Brandon Maow 21:19
No, but that's exactly what she said when she and I said, Well, yeah, and and so she says, we have an identical match, which meant that it was my blood type and my HLA type, and the HLA is when they take my blood sample and the blood sample from the donor, and they put it together under a microscope, and they see if the blood that basically comes together and interacts or if it fights, and apparently everything was good. And then she mentioned that it's a brain dead. So someday, they were going to take off life support. And so that kind of hit me to that. Hey, I I'm going to be given a second chance at life because someone had to die. And then that's pretty powerful in itself. And that's like the greatest gift you can receive. So she says, How soon can you be there? I said, When do you need me? She said, just get here within two hours. So I got there. And it was about nine o'clock at night, I walked into the emergency room. I said, my name is Brandon. Maow they told me to tell you that they're ready for me and the doors. The two big doors opened, like like, oh, and a lady was walking down the hall and called my name and and I went right in and she was like, start taking your clothes off. So as I'm walking down the hall, I'm taking my clothes off and they're then they run every test they can. They're sticking things up my nose, and he's just like crazy. And they run every single test. And then all the surgeons, all of the medical, just like the just everyone's coming in asking questions doing all these things and you hear I'm thinking, well, is this actually going to happen? Is this actually going through because they told me that it would be a whirlwind, like it would be something completely unexpected. But nine times out of 10, you're going to get called in more than once because you're going to show up, the organ is going to show up and it's not going to be perfect. And so here I am going, Okay, this is my trial run. This is, you know, we're just testing it out. And then the surgeon came in, and this surgeon was the person, the same surgeon that did my consultation. And that was like such a relief to know that she knew my story. She had met my diabetic alert dog. So the first thing she said when she walked in because I had all people around me was Where's your dog? And I thought, wow, like that was that was like so like, Comforting to hear that. I think I couldn't bring him in a while. I think I think this is going to be a good year for you. It's gonna be a Christmas miracle.

Stacey Simms 24:11
Wow, that's incredible to think about. So this is the day after Christmas.

Brandon Maow 24:18
The day after Christmas. So they took Today wheeled me back. So I'm this is just my assumption. Mayo. Here's the way male Mayo clinics pretty cool. So they always have they have six transplant surgeons, they, each surgeon can do every transplant. They're a specialist at that. And then so what they had a person they're getting a transplant at the time. So I'm the day after Christmas. I'm assuming it was another person like me that got called in. And so the anesthesiologist that I had just spoken to was in the other room doing something and so I was sitting in the room waiting for him to come in to administer everything. thing. And I was looking around and everyone was talking to me. And here was the surgeon and her three assistants. They were all over silver stainless bowl, working on the pancreas. And I was like, oh my gosh. And then on this big whiteboard, I could see all the information and all of my scans and my x rays laid out. And it was just like, incredible. It's like you're sitting there, it's like in slow motion, you can just see everything and the potential. And the doctor walked up. The anesthesiologist walked up and said, All right, time for your new life. And when I woke up, I wasn't in pain. Because in all my kidney surgeries, I was always in pain. And I was like, was it successful. And the lady was like, Yeah, I was like, how do you know she's like, well, you're not you're not on insulin in your blood sugar's 82.

Stacey Simms 25:59
Wow. That was an incredible feeling.

Brandon Maow 26:03
Yeah, I mean, it was the most crazy thing to experience. It was like the first time like, I could start processing emotions, like, Oh my gosh, is this the end of my problems? Like, do I not have to worry about this instant death from these low blood sugars? Like, like, what is what is the future look like? What is going to happen and like, you get flooded with all these things. But yeah, it was the first time in two years, I wasn't just having a constant low blood sugar in it, it felt amazing.

Stacey Simms 26:35
So I feel really fortunate to be talking to you a year and a half later, because you have had to figure out how to live this new life with I assume no insulin. But I also assumed and I've seen you on you're very open now, which was a big change on social media, about taking medications about the anti rejection drugs, the regimen that you have to go through. So first question is Are you still off insulin

Brandon Maow 27:00
Yes.

Stacey Simms 27:02
Wow, what is that like in and of itself because you were diagnosed again at three years old?

Brandon Maow 27:07
Yeah, I did not know life without insulin. So it's even to this day. It's strange because I'm told to be fat and happy and eat, because they want that pancreas to work and they want it to be producing insulin, but it's so foreign to me to like, just eat like a non low carb diet. And so I'll eat like for instance, I ate lunch not too long ago and I had chicken, asparagus and strawberries and I'm like, Okay, what are the carbs? I'm like, No, I don't even have to worry about that. Like why am I still thinking of that? But I do have hypoglycemia still. which kicks in every once in a while. And the theory behind it is Is that because my body is not used to it and that my liver hasn't gained its ability to kind of control that those lower blood sugars because the liver holds on to Glucagon or glucogen. that it hasn't built itself up yet. So I do still have to test my blood and keep track of that. Because the hypo’s I get every once in a while.

Stacey Simms 28:26
How's your dog does your dog kind of confused now that he doesn't need to alert as much

Brandon Maow 28:31
he he is living his best life. So he's, he's retired and he just has fun and he is still he is like, he is so well. So good at what he does and well trained. He comes up and and as often as he can, he comes in smells me to see how my blood sugar is doing. And then you can just see him like he's just so happy that he doesn't have to alert me and then he'll go and then he'll just walk around and just be happy. He is like, he doesn't know what to do because for two years he was with me by my side, my, my, my friend, my, my companion, the person that would save my life. And now he just gets to be a dog. And it's pretty, it's pretty cool. And I'm very happy that he's able to live that life.

Stacey Simms 29:22
What's his name?

Brandon Maow 29:23
Boone

Stacey Simms 29:24
Oh, I'm sorry. So tell us what you do have to do. I assume that you're there's a lot of medication. Forgive me. I don't really I'm not that familiar. But you always hear that, Oh, you don't really want to transplant because there's so much to do write there's so many medications to take. What is it really like?

Brandon Maow 29:39
Yeah, they tell you that, like, oh, there's the medications are just terrible. It's so much better just to stay on insulin and all that kind of stuff. And now that I've had the year and a half experience with it, I can tell you that the side effects are pretty intense. changes you like, like, the side effects of that I experienced are like mine, my entire g.i system and stomach is just it's always a little bit upset and it's just never settled because of some of the medication you have to take and, and the medications that I take are anti rejection, which means that they suppress my immune system so that my body won't fight against the organ and the transplanted organ, and I've had two bouts of rejection. And so every time they up the amount of medication that I'm taking, which then worsens the side effects, and they come with things like they eat away at your muscle, and you have to take a steroids so you're always like this weird bloated and you can't sleep at night, and then you have to take one that damages your kidney. If you don't keep track of it correctly and it also causes like muscle tremors and hair loss and head aches and all of that kind of stuff. And so I agree like the the medication is quite a daunting task. However, after being a diabetic for 31 years, and struggling through those low blood sugars, the trade off is nothing. It's like saying it's like saying, I would say a difference is between a one hundred dollar bill the 100 dollar bill is like low blood sugars, and all that kind of stuff versus a penny. And so I would take the penny any day over the hundred dollar bill with all the problems. I don't like that. I don't know if that's a good analogy, or if that makes sense.

Stacey Simms 31:44
It makes sense. But let me ask it this way, because what I'm trying to get at is when my son was diagnosed, several people said to me over a period of years, well, can't he just have a pancreas transplant? And my response was always well, the doctors told us that for a healthy person with One, it really isn't worth it. And I guess that's kind of what I was asking because your situation was, was not the ordinary experience. So I think we're all individuals, I really can't ask you to make this choice for anybody else. But what I was trying to get at in a weird way was sort of more. When someone who doesn't have diabetes says to a parent like me, well, you should just get a pancreas transplant or put them on the list. I would imagine that's that's not a good trade off for someone who doesn't have those chronic hypoglycemia incidents, who is living a good life with type one?

Brandon Maow 32:31
Yes. And I think that that perspective is correct, because when I was a well controlled diabetic, it didn't impact my life. Like, minimally, the amount of doctor's appointments that I have to go to now the amount of blood work, the amount of fear of rejection, all that kind of stuff. This was a last chance effort at making things right, as a diabetic and so I think Always having the option of the transplant is is a good card to have to play later on if anything ever goes wrong. But if you can control your blood sugar's and you are doing well with it. I think that the best way to handle it is to stay on insulin. And just live your best life because you're far more prevented from doing things with a transplant on the medications because a common cold will kill me. If I catch COVID it will kill me. And that's because I don't have an immune system. And so, well, well I have a much different life. Now. I am alive and I feel good. But just because I'm not taking insulin doesn't mean that I'm cured. The moment something stops working, I am back to the same exact spot that it was. And so that's that's not a cure. It's just it's a pause in what I was going through.

Stacey Simms 33:58
What is this? COVID situation like for you as you said, you have to be so much more careful have you left your house since March?

Brandon Maow 34:07
At first I didn't because we didn't know what was going on and so now that we kind of have a better idea of what what goes on with it, what symptoms look like all that kind of stuff. I just I take my temperature every morning. I go and live the best life that I can I wear my face mask I am constantly using my disinfectant wipes and Lysol wipes and everything like that. And I balance that life of do I live in a bubble or do I live life and where's that balance of being safe with with it all and so I just try to do the best I can. I'm not like if I go to the grocery store I'm in and out as quick as possible. I don't interact I don't touch anything except what I absolutely need to and then wash everything. Go home and do the best. You can I mean, I still have to live life. I can't. I couldn't I cannot have gone through all that event through to simply live in a bubble. That doesn't make sense to me.

Stacey Simms 35:09
I saw a picture of you on Instagram with a surfboard. Do you see

Brandon Maow 35:13
ya? Mm hmm.

Stacey Simms 35:16
Would you surf before?

Brandon Maow
Not nearly as much as 35:19

Stacey Simms 35:20
Really?

Brandon Maow 35:22
I love the ocean, but I prefer fishing. And but so well I'm not able to fish as much as I would like I, my brother lives very close to the ocean. I'm about 45 minute drive away. And so I go and I surf with him quite often.

Stacey Simms 35:40
You know, it's, it's remarkable to talk to you because you're, you have a very, try to say this. You really have a very open attitude to all of this in terms of sharing the story and yet, you know, being frankly quite inspirational and yet incredibly grounded at the same time because you seem to be well aware of the risks. And you know, I'm sure that all the doctors talk to you very frankly, as well. And yet here you are not staying home all the time. You're playing with your dog, you're surfing you're I see that, you know, your fitness regime on Instagram as well. How do you balance all of that? I mean, you're a very young person. And at the same time, you've been through more than many people go through in their life.

Brandon Maow 36:26
Yeah so when I made myself vulnerable, and if that was like my worst fear in the world, I didn't care really about anything else. It was just that whole vulnerability thing. When people when it when I when people showed me that they cared about me, when I was given an Oregon by somebody who passed away. That was my second chance at life. That was basically my validation of saying, hey, you need to enjoy life. stop caring so much about what other people think. And then a doctor told me when she saw me two months after my transplant, she walked in the room and started crying. And I was like, What is going on? And she was like, I was the doctor who saw you. In your consultation. I was like, Yeah, I remember she goes Brandon. I didn't think you'd make it to the transplant. But she goes, she's seeing you today is like the most motivating thing I've ever done. She goes, whatever you did, you need to share that with people because people need the motivation who are going through things that they think that are impossible to overcome. And at first, I was like, that's just dumb. But really, it's true because I couldn't find any information about someone that was going through what I was going through online, it was like impossible. And so I decided I was like, Okay, I'm gonna put my stuff out there and just see what happens. And now I I am happy and proud that I consider myself as a resource online for people who are going through something similar that can find me and ask me questions and that can see that I haven't let this stop me. I am not a victim of bad circumstances, things happen to me, but I, I work through them, I break those boundaries down and I move forward. And just where I'm at in life right now, I feel like that's what's needed for me to put out there for people and for inspiration. And as long as I can do that, I'm going to keep doing it.

Stacey Simms 38:32
I have one last question. I've been dying to ask for 40 minutes. Tell me about the chicken ranch. How many? How many chickens What did you do? I mean, you're a little kid. You're running and you're getting eggs. I know you're thinking this Stacy, this is a very simple thing to do. I grew up near a city. I know nothing.

Brandon Maow 38:51
Yeah, like so. We had a small egg ranch and over as I grew older, it became bigger because population grew everything, everything got bigger. So we had a chicken Ranch, we had three chicken buildings, each building held about 25,000 chickens. And you'd have to feed them twice a day, collect the eggs once a day. And then you would candle them on a machine that you would put them on it would wash them, it would weigh them, and then it would package them, then you'd box them, load them in trucks and go deliver them to companies. And it's all about raising the chick chickens from the time they're hatched. To the time they can lay eggs and throughout that entire process. And so it was a very interesting thing to to grow up in and it definitely taught me what responsibility meant from a very young age. And I cannot imagine having a different childhood because when I when I hear about what people's childhoods were, I'm like, oh my god That just sounds so boring to me. Because no I would, I really would, I would get up and I would go check on things or when I would get home I would see it the lights weren't working correctly. So I'd go change the timer, and just going and delivering eggs with my dad. And just like all those memories of growing up on a farm, it is what you think it is what you imagine it's just its land, with the animals and with all the machinery and just working and all you're doing every day is is making sure that those chickens are well taken care of. And the customers get their their eggs and their product and doing the best that you can. And it's it's pretty. It's a pretty amazing way to Grow up. Yeah.

Stacey Simms 40:45
All right. Is there anything about chickens that would surprise us? I mean, I think we all think we know chickens pretty simple. They're not. They're not really well. I know a couple people have chickens as pets, which seems very weird. But is there any anything? It's just the dumbest question, Brandon, I can't I just I'm curious. I think there's no that's fine.

Brandon Maow 41:02
No, no. So I mean, I really I don't know like in what aspect to me the most the most docile chickens I've ever come in contact with are called Rhode Island reds, they're, they're brown chickens and they lay brown eggs. Those were if you go in the store and you generally see white and brown eggs, and so the brown eggs usually come from Rhode Island red chickens. And then there's a lot of other types of chickens that lay different colored eggs that have a gorgeous use the chicken with like the light or dark meat, there are chickens that actually have like squid ink color skin, and when you when if you were to cook them, their meat is dark and black, like squid ink. So it they're very interesting, very multifaceted animal and that there they are an amazing animal. They seem so simple, but but they are pretty amazing and smart of what they can do and what they can accomplish.

Stacey Simms 42:11
That’s fascinating. All right, that's for another podcast all together. we'll have you back on and we'll talk chickens more. I'm just I had to ask sorry. I will of course link up all the ways to find you. If listeners want to continue to follow your story. What happens next? Is there anything medically that has to fall in line for you? Is it just a six month or annual checkup? We know what happens?

Brandon Maow 42:33
Yeah, so I'm so with the pancreas only transplant. It's pretty rare. They do less than 100 of them per year. Not every transplant hospital is good at them. They don't have a very good success rate. And so basically, the pancreas only is kept track of very carefully for the first three years. So right now I'm doing bloodwork every two to three weeks. My medication gets changed based on that bloodwork. They're looking for therapeutic levels. And they're looking for the enzymes in the pancreas. And what they are, and that kind of tells them how well or how healthy the pancreas is. And so that's what they're, they're constantly looking for. So I'm halfway through the the three year point. And so for the next year and a half, and it be continuing that, and then from there, it'll start going to probably every three months and every six months and I'll be every year but in between there there will always be bloodwork done, and so in keeping a close eye on it just because it is a very delicate organ and you get to think of it like this. It's very similar to transplanting a piece of jello. So just imagine making that a success. So that's what that's why they keep such a close eye on you.

Stacey Simms 43:58
Wow. Well, I could talk to you all day, obviously, but Brandon, thank you so much for coming on and sharing your story All the best to you and I can't wait to see how this goes and continue to follow your story as you shared on Instagram and elsewhere. Thanks so much Keep us posted.

Brandon Maow 44:13
I appreciate it. Thank you so much for having me on Stacey.

Tandem presented new studies at the recent ADA conference and got approval for some of the youngest people with diabetes to use their newest tech. Steph Habif is Tandem’s Senior Director of Behavioral Sciences. She shares what those studies found, gives us more information about Control IQ and touches on what products are up next for the company.

Check out Stacey's new book: The World's Worst Diabetes Mom!

Listen to our previous episodes with Tandem Diabetes

In Tell Me Something Good, great news about college scholarships for students with type 1.

Diabetes Scholars info here 

Join the Diabetes Connections Facebook Group!

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

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Episode Transcript:

 

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes and by Dexcom , take control of your diabetes and live life to the fullest with Dexcom .

 

Announcer  0:16

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:22

This week, Tandem presented new studies at the recent ADA conference and got approval for some of the youngest people with diabetes to use their newest technology. But Tandem is also keeping a close eye on including many more people in future studies.

 

Steph Habif  0:37

It's a shared responsibility across many communities to figure out how to make it easier for different types of people to be included in this research.

 

Stacey Simms  0:48

That's Steph Habif, Tandem’s Senior Director of Behavioral Sciences. We'll talk more about what communities she means there and why Tandem wants to reach out more. And of course, we talked about Control IQ And what's next for Tandem? In Tell me something good great news about college scholarships for students with type one.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

 

Welcome to another week of Diabetes Connections. I am so glad to have you along. I am your host Stacey Simms. We aim to educate and inspire about diabetes by sharing stories of connection. This time of year we are sharing a lot of stories about technology and studies and that is because the American Diabetes Association Scientific Sessions conference has recently concluded so every year at this time, there's new information.

Sometimes it is also timed with FDA approvals like we saw last week with the Libre 2 and with Tandems approval that we're going to talk about for the Control IQ software to be used down to age six. It means a lot of information. It means some bonus episodes, it means some playing with the schedule. Because just trying to get this information out in podcast form can be a little bit more difficult. But you know, that's what I am here for what I love to do

If you're new, my son was diagnosed with Type One Diabetes right before he turned to my husband lives with type two diabetes. I don't have diabetes, I have a background in broadcasting and local radio and television news. And that's how you get this podcast. And just a quick note about my son Benny, I realized the other day, so we're 13 and a half years in with type one, which means we're coming up July 4 which his 13 year anniversary of wearing an insulin pump, which I cannot believe and I remember it like it was yesterday. So I'm going to maybe do an episode or talk about that in another episode, looking back on what's changed and you know how to pick an insulin pump and all that kind of stuff, but oh my gosh, oh, I can't believe he's 15.

Speaking of Benny, the world's worst diabetes mom is now available in more places. My publisher reached out to me. We are now sold online at Target and Barnes and Noble and pretty much expanding to every place You can buy a book online, I didn't realize this was a thing that we started on Amazon and now we are elsewhere, which shows that it's a good thing that I have these people to help me out. But it's also available in library form. And I'm still investigating this. So as you listen, if you get ebooks, that's the library form, it would have to be an E book, you know, Kindle or something like that. If you have a service that gets you library books, check it out, let me know where it is. Because I haven't been able to exactly track that down with COVID. I think there's some issues. I'm trying to get the hardcopy into libraries too. So that's something that you could really help me out with.

And I have to give a big shout out to Molly Cooper. Molly lives in the UK. She sent me a message that she really enjoyed the book. It was so nice of her to reach out like that. So of course, I asked her a little bit about it. You know, I have some UK readers, but I'm interested in the process. There's a different Amazon site for different countries. So I was just interested in how it all worked. And then she posted in one of the diabetes parenting Facebook groups that she belonged in, and oh my god. Molly, thank you so much. A bunch of people talked about the book. And it was such a nice thing for you to do.

So if you've read and enjoyed the world's worst diabetes Mom, I always ask please leave a review on Amazon that helps us so much when people are looking to see if they want to buy the book or get the book. But if you could also post in your Facebook group or on your timeline about it and tag me, but it would be so helpful to spread the word because let's face it, this isn't gonna show up in the New York Times Review of Books, right we have the community to spread the word and it may be immodest to say but I do think it's a book that can help people it's not just our story. There's a lot of advice in there and a lot of learning that I did over the years, I believe very much in it and I really appreciate those of you who are already spreading the word if you're ready and you don't like it forget you know me!

In just a moment I'm going to be talking to Tandem’s, Steph Habif about Control IQ, new studies and lots more. But first diabetes Connections is brought to you by a One Drop and getting diabetes supplies. It's a pain let's face it. Not only the ordering the people up the arguing with insurance over what they say you need and what you really need. Make it easy with One Drop. They have our personalized tester plans, plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions no co pays required. One less thing to worry about. not that surprising when you learn the founder of One Drop lips with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach learn more go to Diabetes connections.com and click on the One Drop logo.

My guest this week is Steph Habif. She is the Senior Director of Behavioral Sciences at Tandem which means she really advocates for the people who use the technology. She presented some of the studies we're gonna be talking about at ADA and of course has presented elsewhere and a quick note if you are new to the show, we use The Tandem system. They're not a sponsor of the show, but I know I am biased toward Tandem. So I want to make that disclosure. First thing I just love the way it works. Look, it's not perfect nothing is but we have been using Tandem for three years now. We switched from Animas insulin pump in August of 2017, just as the Dexcom G 5 update was approved for for Tandem. So basically we got a pump and then we immediately updated the software. We have done two other updates the basal IQ last year and we went to Control IQ in late January pretty much just as it hit the market. I can't believe it has been six months already. So well. I don't think that influenced the actual questions I'm asking. It certainly influences how I feel about the system. So here is my interview with Tandems, Steph Habif.

Steph, thank you for joining me. I'm so excited to talk about Tandem and learn more. Thanks for being here.

 

Steph Habif  6:55

Thanks for having me. I've been a listener of yours for a while so it's a real pleasure. Thank you very much

 

Stacey Simms  7:02

this year's ADA very different may start by just asking you what that was like for you to to present and have to do everything virtually.

 

Steph Habif  7:08

Yeah, it was definitely, I think unique and interesting experience for a lot of us especially people who regularly attend the ADA each year. And I'm not gonna lie. My favorite part about the event is getting to see people and kind of have very energized Creative Conversations together in person, I think a lot of brainstorming and some of the best ideas, birth from, you know, getting together with kids from all over the world at meetings like that. So that part was kind of missing, obviously this year. But given what's happening in the world, I think it was put on fabulously well produced really, really nicely. The excitement leading up to the conference was there that was a part of my experience this year for sure, like every year, and then it all happens through email and chat and tech So my eyes hurt. At the end of the conference, I think my eyesight has taken a little bit of a hit in the past couple months, like a lot of other people. But there was some very exciting information that got presented.

 

Stacey Simms  8:12

Yeah, let's talk about some of that. We've talked about Control IQ in depth before its launch or right as it was launched. Tell us about some of the presentations here. I know one of them was Control IQ in the real world, the first 30 days. Tell me about that.

 

Steph Habif  8:29

Yeah, so that was a proud moment for me and my team, the scientific posters that we presented at this year's ADA. I think one of the people you have had on your podcast to talk about Control IQ is Molly Malloy and she's on my team here at Tandem, we get to work together. She was one of the researchers whose name was on these presentations at ADA and the first 30 days. That was really our first look under the hood, so to speak. So one of the things that my team here at Tandem is responsible for is post market surveillance and user experience research. Meaning once the FDA approves or clears a medical device, like the T slim X2 and people start using it in their everyday lives, the job of my team is to observe, measure, learn, how's that going for people? whether it has to do with their glycemic outcomes, like time and range, or quality of life, things like how's your sleep? Those are all the things that we're responsible for researching and studying. Now, what we did for a DEA was we didn't have very much time with Control IQ in the market before the ADA deadline presented itself.

So Control IQ came to the US market starting mid January, and we had to have all of our materials submitted to ADA by the second week of March, so not a lot of time. So like I said, sort of first look Under the hood, meaning we went into our databases into our T Connect web application, back end systems, and we use some research methodologies to kind of see how it was going for people. What sort of glycemic trends and outcomes were we seeing for the early adopters right out of the gate, and we specifically focused on folks who software updated. So I think Benny's a software updater - he was on Basal IQ leading up to Control IQ. And how old is Benny? Again? He's 15. So he was probably included in our analysis. Absolutely. So sorry, no. Yeah, so anybody who was age 14 or older and had at least 21 days of use on control, IQ technology, leading up to march 11, was included in this analysis. So

 

Stacey Simms  10:52

he was he was definitely in there. And you would have seen a great response. I don't mind telling you.

 

Steph Habif  10:56

Yeah, so this information that we presented at ADA Like I said, we didn't have that much time. So really data mining to look at glycemic outcomes. So it was a retrospective data analysis exercise, essentially, which is a very common thing to do when it's your first look at sort of what's happening in the real world. And we were really pleased to discover that overall real world users are experiencing an increase in time and range of 10%. Before updating to Control IQ. The folks in this study had a time in range of about 68%. And throughout their first 30 days on controlling IQ, they experienced an increase to get that overall time and range metric to 78%. And what's exciting about that is that 10% jump matches what we saw in our control, IQ clinical trial.

 

Stacey Simms  11:53

Did you have any data about ease of use? In other words, do people continuously use it? Did people have sensor issues? If you have have problems figuring out how to adjust anything I know it's it's tough to glean in such a short time. I'm just curious if you learned anything else.

 

Steph Habif  12:06

So for the purpose of what we presented at ADA, we kind of kept it really simple. Again, because we didn't have very much time we mined data we we worked with what was available to us. And so we really focused on things like changes in time and range hyperglycemia hypoglycemia, and we didn't for the purposes of what was presented at ADA, talk about quality of life, things like sleep improvement, but what we do know is that for the folks who were included in this analysis, overall, they experienced the percent of time in closed loop automation was 96%. And that's really exciting. Now for the Control IQ technology system. The only reason a user isn't in automation is if they lose connection with their CGM for 20 or more minutes, that's it. And then once CGM is reconnected automatically, you're back in that automation close loop. So that's really elegant and simple. And that came through in these metrics that we presented at ADA.

 

Stacey Simms  13:17

Yeah. So that's interesting. I mean, not to jump to a conclusion. But let me just make sure I'm hearing you right. So we can pretty much conclude if 96% of people using Control IQ, excuse me, if people using Control IQ stayed using it 96% of the time in automation. That means that their sensors were working that things were chugging along just as they should.

 

Steph Habif  13:35

Yes. And thank you for bringing that up. So we have some consensus guidelines on data integrity for this type of research. When you're doing real world research like this, the guideline is for the purposes of data integrity, to include CGM rates that are 70 to 75% or above. So what that means is in our analyses for the ADA we included people who had at least 75% CGM connectivity over that 60 day period. Now in the clinical trial for Control IQ, the investigators reported CGM connectivity in the high 90s. That was a way that we could sort of control for that variable given that we were doing a retrospective data analysis, if that makes sense.

 

Stacey Simms  14:27

Yeah, it does. Because it's really important. And you know, this people in the diabetes community, there's separate issues here, right? There's Control IQ. There's the Tandem pump, but there's the Dexcom  sensors, which Listen, it's not a Dexcom  interview here. But we've talked a lot on this podcast about people who just have trouble with the sensors, and sensor failures and things. So I'm glad to hear you clarify because I'll be honest, that 96% number didn't really sound real world to me, but it makes a lot more sense when you understand that it's already looking at people who have good sensor luck. I don't know what to call it. Good sensor usage or It lasts.

 

Unknown Speaker  15:01

Connectivity.

 

Stacey Simms  15:03

Yes, connectivity, that’s what I was looking for. Yeah, that makes a lot more sense. There was another study, if I'm reading this correctly about people with type one and type two, use the Control IQ. I didn't know anybody was type two was was really using it. Can you speak to that?

 

Steph Habif  15:16

Yeah, that's pretty cool. So it turns out we have a fairly present segment of our customer base that have insulin dependent type two diabetes. And so again, first look under the hood, we sort of sat there and we were curious, and we said, well, we have some people who are updating software updating to Control IQ who report that they have type two diabetes, I wonder if they're experiencing things differently than folks with Type One Diabetes. And it turns out that both people with type one and type two diabetes are experiencing significant improvements in time and range with use of Control IQ. So the second publication that we presented at ADA was looking at glycine outcomes type one versus type two. Now you've heard me say that folks with type one in our analyses experienced a nine or 10% increase in time and range as a result of their software update. And for folks with type two, that was a 6% increase in time and range. But here's the really cool part, the analysis that we did for looking at the difference between type one and type two, we required a minimum of 14 days of use leading up to the software update, and then 14 days of use after the software update, which is half the amount of time from our first analyses. And so what that means is by seeing that our folks with type one got to a 9% improvement in time arrange, it means that those improvements are happening really quickly, right after the software update.

 

Stacey Simms  16:46

That's really interesting. I want a little dig a little deeper into some of these studies. But I also want to kind of do some bullet points here. So let's talk about Control IQ okayed for young children, because I just happened. Yeah, can you speak to what those studies found? Was there anything different or anything parents of children down to the age of six now should be thinking about anything different?

 

Steph Habif  17:06

I don't really think so. We recently, just a couple days ago, got our FDA clearance for the pediatric indication for Control IQ for children's six year old Jr. Before then it was previously approved for ages 14 and older. We know investigators have been doing research and even younger populations. But right now we're only approved down to age six. And what the clinical trial that focused on ages six to 13 using Control IQ saw was the sensor timing range increase to 67% from 53%. compared to those in the control group, and overnight children using Control IQ technology in the same study state and range an average of 80% of the time, those glycaemic outcomes match what we're seeing in the real world with a slightly older group, and so it's looking very consistent. So far across the board,

 

Stacey Simms  18:02

one of the things I wanted to ask you about these studies and in Tandem isn't the only one who does this. It looks to me like a lot of the automated studies that I'm reading from Insulet, Medtronic and some of the other companies, was that 68% in range number that you mentioned, like the people who started when from 68 to 78, which is fantastic. But we know that so many people with diabetes have like 30%, time in range, right? They need this technology so badly. And I'm wondering, can you just speak to that in terms of I don't know why the studies, and I was glad to hear the kids study was 53% to 67%. That seems a little bit more realistic to me. I mean, God forbid you study teens. What, you know why? Why do you? Why do most of these studies take people who frankly, have relatively decent control, right, we're talking about the whole sphere of diabetes, that just people who have great technology, I would think you'd want somebody who's got an A1C of 10 and you can say, look, we knocked them down to six.

 

Steph Habif  18:55

That is a great question and you are speaking my language. I'm so thrilled To hear you ask that question. That was actually one of the biggest themes to emerge from this year's ADA. And it certainly isn't a new theme, but it was a very prominent theme this year. The call for more diversity in research studies diversity, whether it has to do with baseline A1C or baseline time and range where somebody lives. There was a really exciting study presented at the ADA by researchers in New York who looked at inner city urban teenagers onboarding to the T slim x two with Basal IQ. And that was very cool to see. And so you're absolutely right. It is on us as researchers, as scientists, as clinicians to figure out how to be more inclusive in this type of research. And that's certainly one of our goals here at Tandem.

 

Stacey Simms  19:49

It's interesting because I thought you were going to say, I don't know I thought it was going to be more on the medical side of it. So in other words, is it more of a question and I'm pardon my ignorance here because I wasn't really even sure what I was. Asking there. Is it just harder to find people to be in these studies? Or is it the study criteria that excludes people?

 

Steph Habif  20:07

So at Tandem, we try to have the most inclusive criteria that we possibly can for this year's ADA, again, because we had such a short amount of time, and we really only could take quote, unquote, the first look under the hood, we had to work with the data that was available. When you consider early adopters of any technology really, but certainly early adopters of Control IQ technology, like you said, a lot of those folks were already doing pretty well, especially because most of them were on T slim x two with basal IQ leading up to their Control IQ technology update. It's a loaded question, you know, why isn't there more diversity in this type of research? And there's no one simple answer to that question. I think it's a shared responsibility across many communities to figure out how to make it easier for them. Different types of people to be included in this research. So I think the medical community, the research community, the scientific community and the diabetes community sort of at large, we just need to be better about being more inclusive.

 

Stacey Simms  21:13

Well, and I think it's very easy. Once you set the parameter that you looked at people who are early adopters, we know who those early adopters were there us, there are people who listen to podcasts, there are people who are super educated, they went for the portal before the email came to them. So it's a it's a very self selected group of highly educated people. So I'm not being critical. I get it. It's just Gosh, like I said, I'd love to see what happens when you start people who have a very high A1C and don't have a lot of time and don't have a lot of perhaps access to get a technology like this and see what it can do. Because, you know, I'm such a cheerleader. Listen, my bias is showing, but my son has always been in very good health with diabetes. We've been very lucky. You probably know we don't share numbers, but we're on track to have probably his lowest A1C ever and he has never done less work. It's amazing. So I just hope everybody gets a technology like this.

 

Steph Habif  22:05

Yeah, you know, the psychologist and behavioral scientist in me is just thrilled to hear you say that. I mean, for somebody like me who has studied social science her entire career and has also worked in health technology and medical technology, my entire career, I like to say that my purpose professionally is to advocate for the humans using the machines. And so I want the science to be able to tell the most insightful stories, whether powerful stories like one you're experiencing with Benny, where he's having to do less and less work but experience better and better outcomes, or whether it has to do with, you know, somehow shining a light on underserved populations who could be the greatest beneficiaries of this type of technology, and how can we make that happen? So all of that, to me is very exciting.

 

Stacey Simms  22:56

It's gonna be fascinating for somebody with your background to work in this field, where the mental side of diabetes is just as important. The Human Factors on pumps. It's, we could talk all day.

 

Steph Habif  23:05

Absolutely, yeah. So the easiest way to think about it for in terms of what I do and my team's do here at Tandem is, as you know, the FDA requires very rigorous Human Factors testing in order to submit and receive clearance on a medical device. And so my teams do all of the usability and Human Factors testing prior to our FDA submissions. And then other parts of my teams are the psychologists and the social scientists responsible for doing all the work to understand how the machines are functioning and the everyday lives of everyday users. I feel very blessed to be able to do that for work.

 

Stacey Simms  23:39

So moving to, you know, heaven forbid, we left to let you rest on your laurels at all moving ahead to what may be next. We know that COVID-19 has delayed a lot of things, you know, in all medical fields, but can we ask about the T sport and the Tandem mobile app? Can you talk about where those are right now?

 

Steph Habif  23:57

Of course you can ask. So a lot of you know We have a new insulin pump system that we're working to bring to market next year, we typically refer to it as the T sport. That's our internal project name for it. That's what we've kind of affectionately been calling it while it's been in development. It's about half the size of the T slim x two. It's being designed to be controlled either entirely by a mobile app or by an independent controller. And you're right due to the current COVID-19 environment. We have had some delays in some of our human factors testing. Because the data is required for our regulatory filings. The target submission timing for the tee sport will be pushed out until protective government restrictions are lifted. And because I am the person that oversees our human factors team, let me just say that trying to plan and carry out to actors testing during a pandemic is one of the most unique challenges of my career. And I know for anybody out there who's attempted to plan anything right now it's been particularly difficult.

 

Unknown Speaker  25:04

Before we go on, do you believe the Tsport will have a different name when it launches?

 

Unknown Speaker  25:08

Oh,

 

Stacey Simms  25:10

I won't hold you to it. It's just the first time I've heard somebody say that. Like with Omnipod, you know, they said, Oh is Omnipod horizon? And they said, No, it's Omnipod five. Yeah. Sometimes we sometimes we find ourselves getting ahead, right. We're ahead of marketing. We're ahead of labeling we we follow these projects. So early that we kind of assigned we as a community assign names to things that don't even have a name yet, right?

Steph Habif

Yeah, I am not a betting woman. And so I would be afraid to put money down on what t sport is officially going to be called when it gets commercialized.

Stacey Simms

Alright, fair enough. Fair enough. We'll just know that that's the working title. And then the mobile app. I know there's some people beta testing the phone app, which is more of a observant app, you look at things you can't do anything really yet. Is that the same timeline as the tee sport, whatever that timeline turns out to be?

 

Steph Habif  25:58

No, the mobile app is happening on In a different timeline. So we're developing a mobile app platform that is the foundation of our digital health strategy. The first generation of the app had a beta launch in the first quarter of 2020. And it will be rolled out more broadly in the upcoming weeks. So the first generation of the app will include remote data uploads so that patients can send their hcps important pump data without an office visit. We know that right now we've kind of been forced into this telehealth world. So that's going to be a really critical part of the user experience. And future iterations of the app will include remote bolus capability due to COVID. For sure. We've had some delays in human factors testing on the remote bolus features. And again, because data is required for our regulatory filings, we have to work with that the best we possibly can.

 

Stacey Simms  26:48

I'm so excited about that. I mean, obviously, the idea of bolusing from the phone seemed like the holy grail for a long time, but that is exactly what you're saying. right that the idea here is that you would take out your phone, bolus using pump, you'd be able to control it from your phone.

 

That's right. I give you the impression. I want to talk to you much more about that.

 

Steph Habif  27:09

You know, it's, I will say, being a scientist who's in charge of doing all of the research makes me an interesting candidate for a podcast interview.

 

Stacey Simms  27:20

All right. Well, I have so here's a question for you. And again, no answers a fair answer. I'm curious. When you you start doing things like that. The remote monitoring capability of the Dexcom , obviously, has been very, very popular. I'm curious if I wouldn't expect to bolus my son from my phone. Right? You wouldn't expect a caregiver to be able to do something like that. But what a caregiver be able to see more about the pump? Will there be more information available to people who want to, let's say follow, I don't know what kind of language we'll be using, like the pump battery, the insulin onboard, all of that kind of stuff. Will that be

 

Steph Habif  27:54

available? Yeah. So that's a great question. So follow capabilities through a mobile app. is certainly a part of our product roadmap, there are plans underway for that. I can't speak to when that would come to the market specifically, but it is being worked on.

 

Stacey Simms  28:11

Okay. And one more thing if you can't answer this is fine too. Would it be possible I'm just thinking out loud when my son was was younger and we did do everything for him? If like I could use you could designate like, this is the bolus phone, and it wouldn't necessarily be the phone that's with the kid.

 

Steph Habif  28:25

Great question. You know, cybersecurity is such a critical consideration in this land of remote anything. I can't tell you one way or the other, whether or not you as the parent would be able to use your smartphone to bolus you know from your son's pump. We'll have to wait and see what the FDA decides in the land of you know, security and safety and cybersecurity. For sure. Right now we're focusing on doing the necessary Human Factors testing for enabling the pump wearer to be able to use his or her smartphone

 

Stacey Simms  29:00

I'm trying to keep track of the timeline here. So forgive me for clinical trials underway for the T sport yet,

 

Steph Habif  29:06

right. So for the T sport project, we are not yet doing active clinical trials. But as many of you know, being a medical device company, we have a robust r&d department, and our engineers are experimenting on a regular basis.

 

Stacey Simms  29:22

Ooh, sounds intriguing. You should do all of your studies in Charlotte, North Carolina, you should include 15 year old boys. Yeah, let's move on. Do you know this isn't really your department, a bunch of my listeners had questions about insurance. And a lot of insurers were making noise a few years ago about only going with one pump company. And of course, the big one was United Health and Medtronic does tend to make any progress in that, you know, that deal. Right? So like

 

Steph Habif  29:53

what you said is true. It's not my department. So we don't provide individual payer updates, but we We believe having continued positive data on our technology, like what we presented at the ADA helps with all of our payer discussions.

 

Stacey Simms  30:08

So I would say to paraphrase that Tandem is not going to give up on working with as many insurance companies as possible.

 

Steph Habif  30:14

That is correct. We believe in doing whatever we can to create access for as many people in the world as possible.

 

Stacey Simms  30:21

another bit of news that came out right around ADA was FDA approval of Libre 2 and you all have had an agreement already with Abbott. I don't I don't know the parameters of the agreement. I don't think there's a lot of public the timeline or how it will work. Can you speak to anything about that about how sometime in the future I suppose the Libre will work with a Tandem pump?

 

Steph Habif  30:42

Yes, so Abbott and Tandem share a common goal to provide people with new ways to manage their diabetes that can integrate easily into their daily lives. The interoperability landscape is is very promising in Tandem is working with Abbott on an agreement to integrate a future generation of their glucose sensing technology with our insulin pumps. We haven't announced a timeline for the completion of the agreement, but we're working on it.

 

Stacey Simms  31:08

so dumb question because I always get confused with interoperability. Would this be a situation where I flip a switch on my pump and one week, I could use a Dexcom  sensor and the next week, I could use a Libra sensor.

 

Steph Habif  31:17

I think for some people, that is what the vision is, like, I think we're all playing an active role right now in forming what this interoperable landscape could be. But conceptually, the idea is you could mix and match your technologies and they would be able to speak to one another. Now, that requires business agreements between the companies as well. So don't forget that part because that's an important part.

 

Stacey Simms  31:42

Yeah, yeah. Yeah, let's keep dreaming. Let's forget. So what are you studying? Now? Obviously, this isn't the end of the studies on Control IQ or Tandem products. Can you give us a glimpse into what what you're looking at in the next couple of months?

 

Steph Habif  31:55

Yeah, sure. Well, as you know, we currently offer the TCM x two with basal IQ technology and Control IQ technology. We had some pretty exciting research debut at the ADA on basal IQ in that we followed folks who on boarded to basal IQ during their first six months on basal IQ. And that was what we call a prospective study, meaning we were able to follow people in real time over the course of several months to see how it was going for them. The research we presented at ADA related to that specifically focused on self reported severe hypoglycemia episodes, and we were thrilled to tell the world that basal IQ is doing a phenomenal job of decreasing adverse events related to severe hypoglycemia. So basically, like he's seemingly doing a very good job at keeping users safe. And you know, safety is always at the top of our priority list.

So as we continue to see more people take on Control IQ technology if they choose to do that. We will Do these long term studies where we follow people if they opt in and want us to, we'll follow them while they onboard to and get to know and continue to use Control IQ technology so that we can learn from them. Again, not just the glycemic outcomes, things like time and range and hypoglycemia, but sleep quality, or other things like is it a hassle to use? Is it making your life better? One of the things that I'll never forget is a couple months after phase like q hit the market, I had the chance to briefly talk with a father who had a 16 year old daughter, and she had been on basal IQ for about six weeks. And he looked at me and he said, this is the most under promised, over delivered diabetes technology Our family has ever experienced. And I said wow, tell me more about that. And he said, We're finally sleeping. You know, we can sleep through the night. And you know, sleep is a precursor to everything for everybody. So we're going to be doing a lot more research on the sleep front to see how we can be better continue to improve sleep quality for people with diabetes. That's a very big topic of interest for us.

 

Stacey Simms  34:19

I'm curious to if you're looking at how people on board and adjust to Control IQ, because most people and again, we're biased because we think we're very well educated, right? When we were in Facebook groups, we talked to each other. Most people kind of went through the training, talk to their endo and then did all the troubleshooting themselves over the first two to three weeks. We're experiencing lows we didn't experience before so we decreased bezel or we increased ISF or whatever, whenever people had to adjust. Are you following like common practices to find out how to better teach? Okay, I'm sorry, we are

 

Steph Habif  34:51

we are and in fact, next week we're putting on a couple of webinars specifically for healthcare providers first because it's We've been hearing from them even before we launched into market when we started training healthcare providers on the control acute technology system. We have some best practices now to share now that it's been out there for a couple of months. And we've been able to connect some dots. We'll be putting on several webinars next week for health care providers, where we'll be talking about these best practices and tips and tricks. And we know that not just health care providers, but users and their family members want to be able to ask these questions, too. So I think Molly told me that maybe she'll be getting together with you again, Stacy for a future podcast.

 

Stacey Simms  35:36

Yes. So I'm going to be asking her all of these questions. As the webinar we can kind of see what the what the research shows people with right we're gonna be doing another episode in the near future about best practices. That's great.

 

Steph Habif  35:46

Yes. And so Molly's just such a great person to talk with about that. But for sure, I'll send you the information on the webinars next week. If you want to chime in and watch they'll be recorded as well. And we are starting to roll out all of that message. Now,

 

Stacey Simms  36:00

oh my gosh, that's wonderful. Because I gotta tell you, we laughed. We got ours so early, like I said, who waited for the email? Right? We just logged into the portal that my son's endocrinologist said, Hey, let me know what you've learned. Let me know how you adjust.

 

Steph Habif  36:15

Yeah, that's true. That's true for my family members as well. So one of my niece's has type one, and she's now I think, gosh, almost 12 that blows my mind 11 or 12. I can't believe it. And her dad reminds me on a regular basis that she teaches him, you know, about how to use the pump, and how to use the technology. And I've heard that from other families as well, like, well, we went to our endo appointment, and I'll say, How was it? Well, we taught her a lot, you know, we were able to teach her a lot.

 

Stacey Simms  36:47

It's so funny. Well, it's also new. It's it's amazing to realize that we're all kind of doing this together.

 

Steph Habif  36:52

The energy and enthusiasm for good that is in the diabetes community is so special and so unique.

 

And so I feel very lucky to be a part of it and to play some small role in trying to make it better for everybody.

 

Stacey Simms  37:07

I can't thank you enough for jumping on. As I said, I'm kind of a fan. So I don't think this was an unbiased interview. But your information is fantastic. And I thank you so much for jumping on and sharing some of it with us. Thank you so much stuff.

 

Steph Habif  37:19

Absolutely. And I look forward to continuing to listen to hear how other people you know, share their experiences and tell Benny to keep us informed.

 

Unknown Speaker  37:30

No doubt

 

Unknown Speaker  37:36

you're listening to diabetes connections with Stacey Simms.

 

Stacey Simms  37:42

More information at Diabetes connections.com. The episode homepage always has the transcript and other links that you may need. And I will link up our last episode with Tandem there as well which was all about the launch of Control IQ. And as Steph mentioned, we're going to be talking to Molly Malloy and Others from Tandem. I'm in discussions with them this they've already agreed. It's just a question of scheduling, about getting someone to talk about best practices and other questions. You had so many questions for Tandem, that are more mechanical about how Control IQ works, that we want to do a second interview and really dig into the nitty gritty right, how do I know whether I need to adjust Bazell? How do I know whether it's the carb ratio issue and a bunch of questions of what you'd like to see in the next iteration of Control IQ. So that is coming. Thank you for your patience.

But it's always interesting, right to get a high level view of what's going on in these companies, and to try to look at the timeline as best we can. So that was really interesting that the reminders Steph gave me about how we do kind of get ahead of the curve around here, you know, not just on this podcast, but those of us who are engaged enough to be in Facebook groups and be on conference calls and listen to the investor calls these companies make and feel like we are familiar with the language and the labeling before it's even submitted to the FDA. So I'm in interested to see if the name of the T sport does change. Frankly, I really like it. But hey, that's I'm not in their marketing department. So we'll see.

Okay, tell me something good coming up in just a moment. But first, do you know about Dexcom  clarity, it is their diabetes management software. And for a long time, I really thought it was just something our endo used, right? It was something we went there and he looked at it, but you can use it on the desktop or as an app on your phone. And it is an easy way to keep track of the big picture. I check it about once a week. Well, to be honest with you, I check it more now ever since we flipped over to Control IQ. I really like to look at it because and I noticed a psychological, right because it gets better and better. But it really does help me and Benny dial back and sees longer term trends. And it does help me not overreact to what happened for just one day, or even just one hour. The overlay reports help context to Benny's glucose levels and patterns. And then you can share the reports with your care team which makes appointments a lot more productive and it was essential for a remote appointment that we have Back in March, it was amazing. managing diabetes is not easy, but I feel like we have one of the very best CGM systems working for us Find out more at Diabetes connections.com and click on the Dexcom  logo.

 

Tell me something good this week all about diabetes scholars, we talked about this, I try to let you know when it opens up. This is something that comes from Beyond Type 1 and they give more than 50 scholarships to students living with Type One Diabetes. So it's a combined $250,000. And these are for students who are in the high school class of 2020. entering their first year of college. This was a record number of scholarships for the organization. So a little bit about the kids 54 outstanding students representing 26 different states. They are advocates, student athletes, scientists, writers, actors, mathematicians, and leaders. Each of them of course lives with Type One, two beedis there is a list of the diabetes scholars class of 2020 that I will link up so you can peruse and see all these fantastic students who aren't going to change the world as they head off to college at a very uncertain time. Oh my goodness. And these are significant scholarships, they range from $1,000 for individuals to $5,000. If you have a student who is in high school, and you want to check this out, I will also link up how to enter they do not open again until January.

And I should mention that diabetes scholars was an independent organization for a long time. But when it kind of seemed like it for I don't know the reasons behind it, I hope I'm not privy to the inside information. But a couple of years ago, it seemed like they were going to go under and beyond type one scooped him up and put them under their umbrella. And now they are part of the big beyond type one family. And that's one of the really interesting things not to get off the subject here about beyond type one. You know, when they first started, a bunch of us who've been around for a while, kind of thought, Well, what is this fancy new social media feed going to do? Right? What is there Legacy going to be what kind of changes are they're going to make? And while I think that they have still differentiated themselves by appealing, perhaps more to young adults, and focusing a lot, I mean, their social media is amazing. They've also now really made a name for themselves by being an umbrella organization for smaller diabetes groups that it's really hard to survive with a low budget when you try to go yourself safe sitting as part of them. I think slipstream now is part of them. Lots and lots of be on type run lots of little organizations that make a big difference, but needed their help so I guess that's a Tell me something good as well for beyond type one.

If you haven't Tell me something good story. I'm in the process of gathering more I've been putting up the posts in the Facebook group and elsewhere. If you have some good news, I want to share it just let me know you can also email me Stacey at Diabetes connections.com and tell me something good.

I mentioned at the top of the show that we are going to be marking 13 years with an insult pump in July, really just late next week, July 4. Yeah, we were geniuses and decided to start it over Independence Day weekend, when we were not even at home. That's a story for another time that I have told that I tell in the book too. But we are also next week headed to the endocrinologist for the first time since January, we did not get an A1C when I had a telehealth appointment for Benny in March. So I'm really interested to see I mean, I know the drill from Dexcom . And while I don't share numbers, I think we are going to have one of if not the lowest A1C’s Benny's ever had thank you to Control IQ. But there's always more to talk about when we see the end, other than just the numbers. So I will keep you posted.

If there's anything that Benny wants me to share, or that we want to talk about, but I'm really looking forward to that appointment just because Gosh, we've never gone six months without seeing our endocrinologist and while I know a lot of people think it's a pain to go every three months i mean i think it's a pain to but I'd like checking in I love Dr. v. I always learned something we always ask about Questions, even though he except it was asks me questions now, which is really funny and I do enjoy. I think that when you have a kid who changes as much as my kid has over the years, just physically, you know, and everything else, it's really important, at least for me to have that kind of touchstone, so I am really looking forward to it. And I think Benny's grown an inch. He thinks he hasn't grown at all. Anyone. Let me measure him. I mean, how ridiculous so we'll get a bite, which is what I'm looking forward to as well.

Okay, we have so many great episodes on tap. I have all this technology stuff. I have some personal stories that I've been holding, always a mix around here about the technology, the news, the great stories from our community camp. Oh my gosh. So there's lots coming up. It's just a question of what comes next. If there's any breaking news, we'll do our very best, but please join Diabetes Connections, the group on Facebook, that is the best way to stay up to date as to what's coming and I often ask you all questions as well, which helps me figure out what episodes are really important to you. Thank you to my editor John Bukenas from audio editing solution. And as always, thank you for listening. I'm Stacey Simms. I'll see you back here next week until then be kind to yourself.

 

Unknown Speaker  45:12

Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

 

Digging deeper into recent news from and about Dexcom. Stacey talks to Chief Technology Officer Jake Leach about the news that competitor Abbott has received approval for it's Libre 2 CGM. What does that mean for the marketplace? She also asks Jake about G6 sensor issues, data gathering and more.

Check out Stacey's new book: The World's Worst Diabetes Mom!

Dexcom statement on data and privacy:

Patient safety is a top priority at Dexcom, and we design our products to be as safe and secure as possible, as the data that comes into our system from CGM devices is extremely important for patients and physicians in understanding and improving diabetes management. Dexcom works with government agencies, industry partners and security researchers to apply current best security practices for medical devices to help ensure the integrity and availability of our systems.

Our terms of data use are laid out for patients to consent or opt-out when they first set up a Dexcom account, so they know exactly how their data could be used and who will have access to it. In order for healthcare providers to access patient data, each patient must approve the sharing of their data to the healthcare provider through the CLARITY app. Another way patients can opt-out of sharing any of their data is by using the dedicated Dexcom receiver to view their glucose levels instead of a smart device.

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Episode Transcription:

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:16

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:22

Welcome to a bonus episode of Diabetes Connections. So glad to have you along as always. A bit of an unusual situation this week in the very last episode, and hopefully you've heard it. I spoke to Dexcom CEO Kevin Sayer. we taped that episode before the ADA conference actually took place. You know, the time shifting nature of podcasting. we taped these interviews ahead of time and then a couple of days or a week later, generally, the interviews air. A a couple of days after taping that interview, the FDA approved Abbott's Libre2 and this is a different CGM is able to continue transmit glucose data every minute. And users can now set the system to send alarms when their glucose is too high or too low. And previously, you had to scan the sensor in order to get any kind of glucose reads. So that is a big change, and frankly, more direct competition to Dexcom.

I have reached out to Abbott in the hopes of learning more and asking them any questions that you may have Dexcom though, immediately reached back out to me and asked if we wanted to talk more about CGM and how they stack up in the marketplace. Now, I am not going to pass up the opportunity to ask more of your questions. And that's why we have sort of a Dexcom double feature this week.

My usual disclaimer Dexcom as you have heard, and longtime listeners know Dexcom is a sponsor of this show. That means they pay me to have a commercial in the show. That sponsorship gets them a commercial, it does not get them any kind of approval over content. And so what does that mean? It means I don't send them all the questions. I have of time, we don't plan out what we're going to say. I hope you know, as you've listened that I don't hold back on questions and criticism from them. But we do have that relationship. And it's really important that you you know it right because we were doing news interviews here.

And this interview is with Dexcom CTO, Jake Leach. I will link up more information at the episode homepage. And as always, there is a transcript. So here is my interview with Dexcom’s chief technical officer.

Jake, thank you for jumping on and spending some time with me and my listeners. We always appreciate learning more about what's going on at Dexcom. So thank you.

 

Jake Leach  2:36

It's a pleasure to be here. Stacey. Thanks for having me.

 

Stacey Simms  2:38

Absolutely. So I just talked to Kevin Sayer. We did kind of a high level, you know what's new, what's next? How are things going? Talking about the G7? It he's of changes that have happened to the G6 COVID delays, that sort of thing. My listeners had a bunch of questions as this is the backdrop of course of the Libre news that came out Abbott's Libre 2 have got approval for use of the United States. The number one question that my listeners had was, can they talk about the price difference? I don't know if that's a CTO level question.

 

Jake Leach  3:11

Yeah, as much as you know, I'm involved in it. We basically, when we think about the cost of the product, the most important thing to be thinking about is making sure people have access to it. So insurance coverage, we feel really good about the fact that 98% of the private insurance companies do cover the product, as well as Medicare started covers it. And in states, many Medicaid systems do also cover the product as insurance. That's where we focus our time is really on on that. And we very few of our customers actually pay cash for the product. The vast majority of everybody gets it through insurance coverage.

 

Stacey Simms  3:48

When I look at the Libre, and full disclosure here, my husband has type two diabetes and he uses the Libre and Benny my son has used the Dexcom since 2013. Now, wow, yeah, it's funny to think about how much time has gone by. But one of the things I look at with the G7 coming and the you know, the bit that we know about it is that it will be much more like the Libre in terms of the sensor and transmitter in one. Can you speak to that in terms of the G7 in terms of size, insertion, that sort of thing?

 

Jake Leach  4:25

Yeah, so the G7 is, as you pointed out as an integrated sensor all in one, so it's the wearable device that goes on the body includes both the sensor, the transmitter, as well as the electronics inside the wearable that are both monitoring the center and then taking that signal and sending it via Bluetooth to the different integrated display devices whether that's a mobile phone, so a smartphone with an app on it, Android or iOS, or a insulin pump for automated insulin delivery systems. Other display devices, we have our receiver that is our proprietary handheld, some people really like that as their way to access the information. So our goal is to make it as interoperable as possible, which is one of the key important points about IC GM is that it's interoperable device

 

Stacey Simms  5:16

you And with that, I always get hung up on it. Because when I heard about interoperability A few years ago, in my head, it seemed like, Okay, well, I could switch out my pump, or I could switch out my sensor, I could use a different brand with this thing and kind of mix and match. And of course, insurance for most of us is the biggest problem for getting different devices. But it doesn't really work like that, does it? I mean, if a Dexcom g seven works with say, Omnipod five horizon, and with a T slim X to control IQ, people aren't really going to be able to just switch out devices like that and use the same sensor, are they?

 

Jake Leach  5:51

Yeah, as usual, it's more complicated as you look at it under the hood. But the key thing about the integration is that systems have to be designed To be able to be integrated. And so one of the big moves that we made when we transitioned between Gen four, and Gen five, and then subsequently Gen six, and as well as Gen seven, we moved to Bluetooth technology, which is a much more readily available technology within the display devices. So we moved to that. And when we did that, we designed an architecture that the intelligence of the system is all on the the wearable. So all the glucose calculations, all the information that you need is actually on the little transmitter device in G6, and will be in G seven as well. And so that is the device that can be accessed by multiple displays. If you think about it, you can use your mobile phone and the whole share feature that comes along with our mobile system, the remote monitoring feature, you can use that and at the same time, you can use a tandem controller to pump doing automated insulin delivery. And so the system is really designed to have that type of integration where you've got the right information in the right places and makes it interoperable. The systems have to be designed To be connected, for example, horizon five Omnipod five, the system that is in development by insolate is being designed to be integrated with both G6, that's what they're doing their studies with as well as G seven. So you have to do the design work and do the testing to ensure that it operates safely. But interoperability is a great thing. But it isn't as simple as just pulling and pulling everything it has to be designed and tested.

 

Stacey Simms  7:22

Yeah, it was interesting. I in my head, I always had it as well, this, you know, I can mix and match, I can figure out what I want. But when I talk to technical people, they always kind of smile at that because they understand more of the intricacies, I think of what it takes within the technology to make that kind of stuff happen. Whereas as the user, I just want to hokey pokey it around and use what I want. But we'll see as it goes down the road. Some other G7 basics that my listeners asked was, will the G7 have a shorter warm up and does it have a lower MARD? Is it more accurate than G6?

 

Jake Leach  7:55

Great questions. The warm up time is designed to be shorter than g6. And so we're As we're landing exactly how much shorter it's going to be, but it's definitely going to be a faster warmup. Also, the mard is the average difference between the sensor and the reference measurements that we measured the performance of the device and so on. That way, we want to ensure that we hit those iCGM standards. And so I think G7 definitely has the opportunity to perform better, but it definitely will meet those CGM standards, which are rigorous and important to ensure the product performs accurately throughout its life.

 

Stacey Simms  8:30

Can you give me a hint on the warm up? Is it going to be more an hour and 45 minutes or more?

 

Jake Leach  8:35

No, no, no, it's gonna be It'll be an hour or less.

 

Stacey Simms  8:40

You know, just had to double check on that.

 

Jake Leach  8:42

Yeah, no games there. We're just we're still trying to dial in exactly what's going to be to ensure we you know, the system has to be accurate. Second, it starts up but we do value short warmup time because we know how important it is when you know you're without the sensor data for that warmup period. So you want to make sure it starts up as fast as possible.

 

Stacey Simms  8:59

Yeah, it's interesting too. Because I'm probably an outlier but previous to we use the control IQ system with tandem previous to using that the two hour warmup really didn't bother me too much. I mean, it was only two hours especially if you came from like we did seven years with no CGM. It's really did not seem to be that big a deal. But now that we're using this algorithm, and the pump relies on the Dexcom data, two hours just seems like way too long to be without it.

 

Jake Leach  9:27

I agree. Really interesting.

 

Stacey Simms  9:29

Speaking of wear time, we've been very fortunate. Again, as I said, we've used Dexcom for a long time we do not really have a lot of issues knock on wood with it. He's of sensitivity which Kevin mentioned in his in our interview together, we went over that, but also with where time, but a lot of my listeners wanted me to ask if you are really checking into the people who can and there are many who can never seem to make it to 10 days on a sensor. Right who really was it whether it's because they have a young  child or the body chemistry for whatever reason, it does seem to be an issue that many people can't get the full life out of a sensor.

 

Jake Leach  10:07

Can you address that? I know you're looking at it.

 

Jake Leach  10:09

Yeah, yeah, I've got, of course. So a couple things there. There's quite a few things we've done over time. And we continue to research on this. There's two aspects to sensor longevity. One of them is how long the sensor can remain accurate. And so within our device, we have algorithms that are checking the performance of the sensor at all times. And so there are times when we detect that that sensor signal is not accurate and not meeting the CGM standard. And so we we actually shut it off and that's when you get on the display, you get the sensor failed signal. That's basically we detected that that sensor is not working properly, and it's not going to return to functioning based on the data that we're seeing from it. As you mentioned, most people are able to get 10 days out of the sensor particularly now that we've made some changes with the adhesive as well. But there are some people who don't and with those folks, we often spend some extra time with our tech support, and kind of walk through what their issues are. And there's quite a few things that can be done to help sensors last longer. I mentioned the adhesive, we recently updated our adhesive, we've added an overlay. that's optional, people can ask if you have access to the clear adhesive that goes over the top of the white one that comes with the product. And so we're looking at lots of different ways.

Because what we found is everybody's a little different in terms of what their needs are and what works for them. And so we're trying to do is have as many options that we can to make the sensors stay on and heared. And it's really that's our philosophy around sensor longevity is if I really wanted to I could I could run a study and claim that G6 goes 15 days because I know the performance would meet that the problem is not all the centers would last that long. And so what we're really after is making sure all the sensors, as many as we can get out to the labeled timeframe, not just some of them. And I think that's one of the key differences that you'll see over time between different CGM companies is we're very focused on a high level liability, you're never going to get 100%. You know, sensors will come off and they'll get knocked off. It's a challenge. But it's one that we're very focused on trying to ensure that we can have the highest flow reliability possible.

 

Stacey Simms  12:12

Let me just follow up on that, because sensor sticking is one thing, right? I mean, I know that that's an issue in everybody's skin is different. And you have the overlays now, and the adhesive does seem to be sticking better to many people. Butwhat about people who have no trouble getting the adhesive to stick in the wire to stay in, but get recurrent sensor failure? Are there any best practices for people who seem to get that over and over again,

 

Jake Leach  12:36

there are and it's actually often comes down to, you know, sensor placement and you know, the sensors indicated for abdominal use. And so, we often instruct folks to try at different locations. We've also, if someone's really having repeated challenges and where they're getting those sensor failures, we do have specific capability with our tech support to work with that customer and look at their data and To help determine exactly what is going on, there's a number of things to we tend to see, that happens when people are more dehydrated. So you know, kind of making sure they're well hydrated and drinking water. But if someone's having consistent problems all the time, then we really want them to reach out to us and talk to our tech support. And we can get someone who is experienced, but you know that those types of issues to talk to them and look at their data and help work through it.

 

Stacey Simms  13:22

I don't mean to harp on it. But I've just, and I'm, I know, you may not be the right person to try to pin down on this, so forgive me, but I'm thinking like, Is it an insertion thing is it I mean, we've, anecdotally, the community has said, drink water, stick in the fattest place you possibly can maybe rock the sensor a little when you're inserting it so it doesn't go as deeply in like it's more shallow. I'm just curious with all the data that you will collect in these phone calls. If there's any, like I said, a best practice that would help or if it's just you know, you've got to talk to your local rep, maybe get an in person or zoom call lesson or talk to tech support, but you know, just a more concrete business advice, I think would be so helpful.

 

Jake Leach  14:01

Yeah, I think a lot of it does have to do with that insertion saying, like you said, you want to put it into a place where you've got good interstitial tissue. The other thing I've seen, too, is, um, you want to make sure that it's not at a place where you're going to compress the center a lot, you know, if it's under compression, you're not getting the same amount of perfusion there have glucose under the skin. And so that can also lead to issues. There is something recently that we've released in a product that has really solved a number of issues in that people were getting sensor failures during really high glucose excursions. We've sent some solved that problem with a new version of our transmitter that is now out in the market, almost everybody has that device. Now, it did make quite a dent in those we were detecting the algorithm was detecting that really high glucose as a potential issue. And over time, we've learned through looking at the data that that wasn't an actual issue until we were able to correct that in a recent version of the device. But yeah, it does come down to kind of working through sensor insertion and placement in Don't have data that validates, you know, some of those techniques that you mentioned that says it will work if you do these things. But we have heard from the community, and in our own times speaking with patients that it has been very helpful. And some of those concepts you just mentioned.

 

Stacey Simms  15:14

Jake, I'm sorry, can I ask you to clarify? It may have gone over my head. But when you were mentioning the newer transmitter that is out, can you just clarify what you meant by when it was reading very high blood glucose? And that was affecting the sensor? And then it sounded like you said, but that wasn't the case. Can you just clarify that?

 

Jake Leach  15:31

Yeah, sure. So what it was, was that during really high glucose excursions, the device was detecting a potential sensor failure where it wasn't the sensor failure. There's nothing wrong with the sensor. It was working. But you know, it's one of those things that once you once you get a product on the market, you learn more about it. And so we've made several iterations to the G6 even since it's been in the market for several years to improve it. And that is one of the cases that we saw patients running into, that we resolved with the newest version of the device is that it doesn't give The sensor error when when there was really high glucose excursion,

 

Jake Leach  16:03

and I'm just curious cuz it does sound like you've resolved it. What is really high glucose? Like over 400?

 

Jake Leach  16:10

Oh, well north of 4, 5, 6 hundred.

 

Stacey Simms

Oh my goodness,

 

Jake Leach  16:14

yeah, we're really, really high glucose.

 

Stacey Simms  16:16

So if somebody has a teenager who's like bumped up to 250 and getting sensor failure, that's not the issue.

 

Jake Leach  16:21

That's not the issue. No, no, no, not in not in those,

 

Stacey Simms  16:24

because everybody has a different idea of really high glucose. So Thanks for clarifying.

 

Jake Leach  16:27

Yeah, that's a good thing to clarify. Because, like you mentioned,

 

Stacey Simms  16:32

you know, another question that my listeners had was about data. And we've talked a little bit here about some of the data that you collect. And I don't know if it's different internationally, but to speak about the data.

 

Jake Leach  16:43

Yeah, sure. Of course, first of all, data privacy is very important, both just fundamentally and philosophically as well as to be in compliance with all the global regulation we're seeing in this area of data privacy. There's a lot of advancements in the laws and regulate Around consent, and users granting access to their data, because in the end, it's the users data. We're just a steward of it. And so we take it very seriously. And so in our processes and our controls, that's how we proceed. So the data that comes into our systems from the CGM devices are used for things like share. So we provide the share system, the remote monitoring, that connectivity is super important. The data is also through that same system made available to the clarity application for use by the patients or customers or their physician. And then we also have that data in a safe lockdown repository that can be used by our tech support agents. If users are having track challenges, like we talked about tech support agents can actually log in and work with that user on their specific data. But

 

Stacey Simms  17:48

hey, it's Stacey jumping in here. I need to insert myself into the interview with the episode here because we hADAn audio issue right there and it was completely my fault. So apologies. Dexcom is going gonna give you a full statement on data and privacy, and I will link it up in the show notes. So Jake can kind of continue his thought that way and give you the full statement. One thing he said that I thought was very interesting though was if you are concerned about privacy and want to opt out, you can just use the receiver all by itself. They don't collect any data that way. But then you can't use clarity or share the information online with caregivers or your health team. But if you want to opt out, that is one way to do it and still use the Dexcom system. I did follow up the data question with one about transmitting data and why it's limited to certain devices. If you use a tandem pump like we do, for example, the transmitter can send data to your phone and to the to the mix to pump but then not also to the receiver.

 

Jake Leach  18:52

Yeah, the ad goes down into the specific engineering of the device deep down inside the wearable, for example to the transmitter producer. There's a battery in there. Every connection to a display device takes a Bluetooth communication channel. And so today, which is six, we support two channels, one for mobile phone and one for a medical device such as the insulin pump, or the Dexcom. receiver, it can support to have those connections to the med devices, because we need one available for a phone. We are looking in the future to allow multiple different types of devices you can imagine watches and other things. And so that technology is we're working the architecture of that. But the key there is that circuitry has to be low enough power that it doesn't use up the battery. We specifically designed G6 to be reliable for that 90 day period for the mere life. And so we couldn't put that system you can't support more than those two connection.

 

Stacey Simms  19:45

Yeah, practically speaking for us. It's plenty. I was just curious about the thinking behind it. And is that going to be the same thing with the Omnipod five? horizon? I'm laughing because I have to figure out how to say that Omnipod five. will it be the same thing Work goes phone and PDM or something, or is that a different setup altogether?

 

Jake Leach  20:04

It's a little different. But it's it with the G6 integration, G6 will support the Omnipod five as well as a mobile app like a G6 app. So it does support that. And as we look into the future towards things like g seven and future versions of G7, we are looking at architectures that could support even more display devices, more than just two.

 

Stacey Simms  20:24

And I'll hope to talk to Insulet in the future to get the specifics. But as I'm asking you this question, that sounds a little ridiculous, because where would it show up on the pod? I guess it would show up on a PDF if you use that instead of a phone.

 

Jake Leach  20:34

Yeah, I think one way to look at it for all of these automated insulin delivery systems is you want good communication between the algorithm that is doing all of the calculations for how much influence to deliver, you want a good connection between that and the glucose signal and the pump that's doing the delivery. That's part of the system engineering of the of the product and part of G6 was designed specifically for interoperability with so that it can support use cases like that

 

Stacey Simms  20:59

you mentioned To watch, I did talk to Kevin about this. So I'm sorry to bring it up again. But my listeners are really waiting for that direct to watch component. Can you speak to that from your perspective?

 

Jake Leach  21:11

Yeah, sure. So, you know, it's a it's a feature that we've been working on in development for for quite a while. And as we've worked through it, well, it turns out, you know, on our side, as well as on the leaves, Apple Watches is one of the one of the examples other than a significant amount of engineering. I think that we all underestimated when we first started talking about that product in the way that it interacts with the G7, as well as the phone app. And so we've been working with Apple closely know, over the last couple of years, actually, when when they announced this feature, it was really kind of a prototype feature. We started working with them closely on it, making quite a few updates on both sides to support that type of a feature. And so while we don't have any dates, where we're going to launch it, it's important feature that we know, adds flexibility to users lives and so we will continue to work on it. But at this point in time, we don't have a specific comment.

 

Stacey Simms  21:57

Yeah, I'm curious um, before I let you go here, DiabetesMine, which is a really great news source, if as you listen, you're not familiar, I always read them. I think they're fantastic. They recently, earlier this year, put out an article, headline “39 potential new continuous glucose monitors for diabetes,” as some of these are never going to happen. A lot of these are, you know, non invasive wearables that, you know, look at a headline, and we may never see again, but some of these are going to happen. Jake, I know you all are watching the competition. You know, I know that, you know, Dexcom has enjoyed a long time here of not having a lot of competition, especially the United States. I'll give you the floor. Are you guys ready to take on these companies?

 

Jake Leach  22:39

Absolutely. I think the just notion that there's that many different companies and working in this space is kind of validating the concept that continuous glucose monitoring is the standard of care for diabetes management and so perfectly comfortable with Mark people working in this space and we continue to drive forward all of our efforts on advancing the technologies, whether it The performance of the sensor the longevity of the sensor, particularly the ease of use, and the integration of our CGM with other devices. And you know from what we've seen, it's a very large opportunity. There's a lot of people who could benefit from CGM, so we're comfortable not being the only player. And we actually going to welcome expansion of CGM space across the globe with other companies as well as tech from

 

Jake Leach  23:23

Well, thank you so much for jumping on. I feel like I got a double feature of Dexcom this week. So thank you for the info. It's always great to catch up.

 

Jake Leach  23:29

I appreciate it. Stacey. Thanks for having me.

 

Jake Leach  23:37

You're listening to diabetes connections

 

Jake Leach  23:39

with Stacey Sims.

 

Stacey Simms  23:43

More information in the show notes as always, the episode homepage and there is a transcript there there are important links. Same thing if you're listening in a podcast app, you should be able to get to the show notes. But you know some apps are weird and they don't post links and Apple podcasts which is the most common one. Used as kind of bad for that sort of thing. So I always put it on the episode homepage, which you can find at Diabetes connections.com.

And a little bit on that audio error if you're interested. I mean, here's some inside baseball. But here's basically what happened. Whenever I do a remote interview, and probably 90% of the interviews on this podcast are remote, right? We're not together, I do them generally through Skype. And my computer is set up so that it automatically records when a Skype call is placed. I have a backup recorder. For those of you who are technical and want to know it's an h5 zoom, and it's fabulous. But it's an external recorder that's plugged into the computer and has an SD card inside of it. So this call like a couple I've done recently, our zoom calls, my computer is not set up to automatically record and you know, everybody knows zoom by now if you're not the host, you don't have the power to record well 99% of the time, I asked the host to please record it on their end and then send it to me as a backup and I just roll the h5 zoom over here. forgot to ask them To hit record, there's always a PR person on these calls, you know, Jake doesn't have to worry about it, they'll take care of it. But I forgot to ask her to do that. So I'm rolling on my end, but they weren't rolling on there. And then and this has never happened before, the SD card was full. And it's a huge SD card. I don't know what the data is. I'm not going to pop it out. Now, look, but you know, I cleared out periodically, but probably only once every six months. And oh, my gosh, I completely forgot to do it. So it just clicked off and stopped recording. I share this with you. Because I mean, we're more than 300 episodes in right. We're close. You know me, I know some of you, but I thought you might appreciate it behind the scenes look at some of the nonsense that goes on here. I was able to stop the interview, ask them to start rolling and then restart. But we did lose that part, which I hate about the data. I have talked to Dexcom in the past about data.

I will link up the specific interview where I talked to them about that. And I will link up the statement that they gave me after the fact I asked them to email me some information about that. But you know, hey, we're not perfect around here and we don't pretend to be the next Episode shouldn't be an interview with tandem. if things work out. We're still in the process of moving some things around with ADA and breaking news, we always like to do the best we can. So tandem should be up next, please join the Facebook group Diabetes Connections, the group to stay up to date. And that's the best way to get your questions into these interviews. When I have something like this, I always ask and you guys are amazing at getting me great questions and letting me know what you want to talk about. So I appreciate that very much. Thank you as always to my editor john Buchanan's from audio editing solutions. And thank you very much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself, even if your SD card is full.

Benny 26:45

Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

 

Transcribed by https://otter.ai

Dexcom is featured in a lot of headlines coming out of this year's just-completed ADA Scientific Sessions. Stacey talks to CEO Kevin Sayer about everything from how COVID has impacted the G7 timeline, what the G7 will actually feature, adhesive changes and more. She asks why Europe got approval for back of arm placement and when we might see that in the USA and, once again, we check in on direct to watch progress.

Check out Stacey's new book: The World's Worst Diabetes Mom!

In Tell Me Something Good, a major league dream comes true.

Read about Garret Mitchell here

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Join the Diabetes Connections Facebook Group!

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Episode transcription:

 

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Unknown Speaker  0:17

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:23

This week catching up with Dexcom at the ADA Scientific Sessions a time when a lot of new studies are presented. But this year COVID-19 means delays for expected tech, including Dexcom G7, which was moving ahead with trials.

 

Kevin Sayer  0:38

It was in full force in March it was gonna continue throughout the rest of the year that came to a grinding halt. We are in the process now of resuming and replanting that schedule.

 

Stacey Simms  0:50

Dexcom CEO Kevin Sayer goes more in depth about the G7 we also talk about adhesive changes, working with European pump manufacturers and what else Coming down the line and tell me something good a major league dream comes true. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of Diabetes Connections. I am so glad to have you along. I'm your host Stacey Simms and you need to educate and inspire about diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned two. He is now 15. My husband lives with type two diabetes. I don't have any kind of diabetes. I have a background in broadcasting and local radio and television and that is how you get the show.

The American Diabetes Association Scientific Sessions is a conference where every year many studies many many studies are released and thousands of people gathered to hear what's new and to do some serious schmoozing Of course this year the entire conference was virtual, which is a terrific opportunity. You know maybe you're able to register and jump online. A lot of new media outlets offered their own platforms for you to kind of take part into the virtual conference. I've never been to a da. And while I don't plan on reading every study, you really can go online and see just about everything. I'm going to link up some of the major links, including the one right to the conference, and some of the abstracts. I think every abstract was on one of the pages I saw. So I will link up all of that information on the episode homepage. And I've already put a lot of it out on social media. And chances are good that as this episode airs the Tuesday after ADA that you may have read about a lot of these things you may have seen some of the studies, but I really like going in depth with the the newsmakers as we call them as I used to work in News Radio, but you know, the people who are putting out these studies, so this is the first of what I hope are many interviews over the next couple of weeks. I have confirmation from several of the pump manufacturers. I've reached out to some of the other tech people and people doing these studies and we'll have more information on And follow up on some of the information that came out.

A quick disclaimer. As always, I always like to make this clear. Dexcom is a sponsor of this show, you'll hear their commercial later on, but they don't have any editorial control. And that means they don't tell me what to say or what to ask when I have Kevin Sayer or anybody on from Dexcom. longtime listeners know the drill. But I just like to make that clear. I'll also add we just had Kevin on the show a few weeks back, it did a whole episode when they announced that they were going to have CGM access to hospitals because of COVID-19. And I asked our Facebook group if it was a little too much Dexcom. But overwhelmingly, they said no, give us as much information as you can. So we will get to Kevin in just a moment.

But first Diabetes Connections is brought to you by One Drop. You know, I spoke to the people at One Drop and I was really impressed at how much they get diabetes. It really makes sense because their CEO Jeff was diagnosed with type one as an adult. One Drop is for people with diabetes by people with diabetes, the people Let One Drop work relentlessly to remove all barriers between you and the care you need. Get 24 seven coaching support in your app and unlimited supplies delivered, no prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life philosophies send you test strips with a plan that actually makes sense for how much you actually check. One Drop diabetes care delivered, learn more, go to Diabetes connections.com and click on the One Drop logo.

The ADA Scientific Sessions this year pretty different all virtual, but the information is still coming out. There's so much of it as always, and I was able to talk to Dexcom. now this interview happened Friday just as ADA began. And while we were able to talk about things that were going to be presented over the weekend, there's always a chance breaking news happens since the interview follow along on social media for more information if anything changed, of course we'd put it out that way. And I will link up more information in the show notes.

Quick bit of housekeeping, there are a couple of terms that we throw around here that I want to make sure to just to define really quickly and kind of loosely, most of you are familiar. MARD is a measurement for CGM, the lower the MARD, the better, the more accurate and we talked about that. We also mentioned iCGM. That is a new we're just about two years old classification from the FDA here in the United States, where an integrated continuous glucose monitoring system can include automated insulin dosing systems, you know, insulin pumps, it can integrate other devices like the Dexcom G6 does with the tandem pump, that sort of thing. It also classifies it as a new type of device in a different class for the FDA, which means different things for approval going forward. I will link up more information on that but when he says iCGM, that's what he's talking about. Here is my interview with Dexcom’s Kevin Sayer.

Kevin, thanks so much for talking to me. It hasn't been so long. Since we last spoke, but with the ADA once I get a roundup of everything that was happening, thanks for jumping on.

 

Kevin Sayer  6:06

Well, thanks for having me again, Stacey. It's always fun,

 

Stacey Simms  6:09

we have a lot to catch up on some things that we just talked about a few weeks ago. I'm going to start if I may, with something that may seem very mundane, but really caught my eye. And that is the approval in Europe, of placement on the upper back of the arm. We are a largely US based podcast, we do have large international listeners who are very interested in Dexcom. But can you talk a little bit about how that came to be? And as we have talked about before, many people here in the US were on the back of their arm, even though it's not FDA approved. So I guess the second part of that question is, are you submitting for approval here too?

 

Kevin Sayer  6:48

Well, I'll answer all those questions. And let's start with your You are correct. People have been wearing this thing on the back of their arm for a long time, even though legally and regulatory, I cannot encourage that on a podcast. The fact is when you go to, in particular to like a kid's diabetes meeting, that's where you see all the sensors. And so we've seen that a lot in Europe, we had done some studies and there was some evidence presented that was compelling enough to the authorities that we can get that arm indication. And so we filed that and we got it. Also combining that in Europe, we got a pregnancy indication as well. So we were in a really good position with with respect to C mark. With US regulations, we have that iCGM standard. And the evidence that we presented in Europe for approval isn't strong enough to meet those iCGM standards that we have with our G6 system. But we are working on putting together some evidence in the US that we think would work and will be good enough. So we will ultimately seek a G6 arm indication. I think the other thing to look forward to as far as that when we run our G7 pivotal study, we're going to run the study on In the back of the arm and on the abdomen and on for pediatric patients and on the upper medics as well. So we'll have three labeled sites there. And that will give our patients literally the optionality labor for label indications where the center and the in the most popular places.

 

Stacey Simms  8:17

It's interesting, when you have a chance, I understand why you wouldn't go back with the G6 and redo things like that, you know, I would imagine the cost alone would be prohibitive. But with the G7 in new systems, it must be interesting to hear from customers, not only things like arm placement, or I wonder if there are other things that you might test. In other words, I have always heard and I guess you can confirm I don't know if it's the case, that the reason that pumps and CGM should not be put through airport scanners is because it wasn't tested there. Is that the kind of thing that in the future we might see you You trying? You know, hey, let's test it with this condition. Let's test it under that condition. I mean, does that come into play?

 

Kevin Sayer  8:55

we do all of the testing required under federal regs. For those things, I mean, I've worn my CGM through scanner, never worn anything through the scanner through the suitcase, mind you better but I will tell you some of the things we do there is, you do have a very good question there. Because you do ask, do we listen and what are some of the things we try before we lock in on our product design and what do we test and some of the things we've we've talked through and thought about what G7 because we've been at this for quite a while we've had multiple size configurations. Before we locked in on what we did.

We've made it smaller, we've made it bigger. We've liked it on the size we like it on because that was the optimal configuration for the electronics and you get to a point sometimes when things are so small, you can almost lose dexterity or the ability to use it properly. We know people want a smaller less visible sensor. As we look going forward. We will continue to focus on that. we tried numerous adhesives with G7  in our research work, what sticks the most without causing problems, etc. We, we even experiment, not just from a customer standpoint or customer feedback standpoint, but from a scientific standpoint, what's the shortest we can make the sensor and still get the outcome and the accuracy that we want. So we've spent enough time on the G7 system, to whereby we've tested a number of things of that nature to figure out what the best configuration we can get is. And we balance that with getting the product approved, and again, through the iCGM standards. So there will always be when we launch a new product, there will always be some features that we leave on the table that we don't put in it that we would like to put in the next generation. But ultimately, we have to stop and say that this is good enough. It's my job to make them stop. I promise you, the guys have more great ideas than you could ever imagine. But that is a very important part of our process to really listen and test those things. As we go.

 

Unknown Speaker  11:00

Okay, so you mentioned you've brought up now the G7. So let's jump ahead. I do have some G6 questions, but let's jump ahead and look at that. Where are you on the G7? Did the has COVID delayed things? I know you hate to put dates out there..

 

Kevin Sayer  11:13

All right, and I won't put a final date out there. But COVID has delayed things on a couple of fronts. The major one is the clinical study any of your listeners and involved in one of our pivotal studies where our patients go into the clinic for you know, at least half a day, at least 12 hours to have blood drawn and tested in the lab instrument is glucose values are raised and lowered. All those types of activities have ceased due to the COVID situation and we had a very aggressive clinical trial schedule. Literally, it was in full force in March and was going to continue throughout the rest of the year that came to a grinding halt.

We are in the process now of resuming and re planning that schedule, but we still don't know all the dynamics of the schedule and the best example I can give you if you go to a large Diabetes Center They might have had four or five patients at the same time in the room being monitored, while the social distancing Are we going to have to? Are we going to be able to have four or five? And what protocols are the various centers going to be running with respect to those clinical trials? So we are really literally out there rescheduling the pivotal study for the G7 system. That is the biggest delay. The other thing we have experienced, and it's to a lesser extent, is just the effect of COVID-19 on all of the people involved in this process. You know, I was talking to somebody the other day, and they used to quote, it takes a village to raise a child it sure as heck takes a community to build a product. And we do depend on a number of other suppliers who encountered their own COVID difficulties, the easiest one that comes to mind which you summon the molds for the plastic or an 18 month lead time and the molding company was hit by COVID and literally shut their whole factory down for a month. And that's not the mold makers. That's not a problem that just does Just reality, we put all of the operational pieces of the schedule back together. We're comfortable with those timeframes.

Now we've got to get the pivotal study up and running and get it big enough. And I will go back to you know, I've talked about iCGM and the bar that the FDA has said, This isn't a study, we can go run with 80 patients and call it a day, there's going to be several hundred patients here. To the extent statistically we can come up with models to decrease the size of this study, we will, but we do analyze it, because the criteria are such and the one that they explained to me that rang the truest in the mid range of the good range of sensors, you know, timing range between 70 and 180. If we have 1000 data points, and if seven of those are off by 40 points, or 40%, the whole trials done, and our biggest source of error in the studies is not the sensor, and it's not because the centers aren't great because they are, there's just so many pieces of paper and so many things that have to happen. So we are really refining that process. Given the fact that we can't run studies now, we're very optimistic once we get them going, and we'll do well. We're going to run a study for Europe, in addition to that, and file that separately, so you'll hear more timeframes from us. But it's going to take longer than even a couple of months to have the perfect schedule laid out a timeframe is not coming for a while.

 

Stacey Simms  14:17

Can you share anything about the G7? In terms of what makes it different? And why move ahead with a new type of sensor?

 

Kevin Sayer  14:26

and I'll go back to my first statement to listening. The one feature our patients have all said they want a smaller, and that's pretty universal. When we embarked on this many years ago, we literally started with something the size of an m&m. Now the G7 is a little bigger than a nickel. It's not as small as an m&m, but it's still pretty small. And we wanted to do that. We wanted to eliminate some of the difficulties with respect to transmitters and pairing the whole G7 system is disposable. We also when we looked at G7, and when we started down this path We designed this from the very beginning to manufacturer in an automated manner. There will be humans manning the machines but these aren't going to be human lives. Everything else we've done we designed around the fact that we manually put everything together or have many manual processes now G6 is about to the point where that will be pretty much all automated or manual lines will go away but we wanted to build a product that we could build 10s if not hundreds of millions of in a repeatable manner and our previous generations or product, even G6 up until now I think G6 has now crossed the barrier where we can build lots of them but build g five system says you could have never got to the volumes we anticipate getting to as as technology continues to expand and explode and i and i think what we've created and our goal which he said is to give us a product configuration that anybody can wear and then it will have multi uses. It's as big a step forward from G6 is G6 was for G five.

 

Stacey Simms  15:56

When you say the whole system is disposable in the size of a nickel Retreat you want to avoid transmitter issues? Is it all in one is the transmitter and the sensor

 

Kevin Sayer  16:04

transmitter and sensor all built into one unit yes

 

Stacey Simms  16:07

I'm you know, having been with Dexcom for more than six years now and I think we started in the g4 Platinum I'm trying to visualize

 

Kevin Sayer  16:16

No, it's much smaller and much thinner and it literally if you wear a G7 you have no idea it’s on your body.

 

Stacey Simms  16:25

Really interesting and you anticipated having a similar more similar you know accuracy as the G6

 

Kevin Sayer  16:31

yes, yes, it has to meet the iCGM standards and and so we've we're designing it that way. We're designing the algorithm the pivotal studies along those lines. And right now what what is becoming very clear to us as we go through these statistics, while MARD is always important from an overall perspective, the iCGM standards are more important than than just the margin number is important that these things be reliable and offer the same experience every time. So we Certainly you have to have a good MARD to be approved on those iCGM standards, but the reliability of the sensors is every bit as important. We're focused on both.

 

Stacey Simms  17:09

Well, as we look forward to that, as you said, it'll be a while because of COVID and other delays. My listeners, as always have questions and one that has come up quite a bit. We'll go back here to the G6 and current manufacturing is a question about whether the adhesive had changed recently on the G6. As always with me, it's anecdotal. I don't have access to studies or thousands of people. But we've noticed within the Facebook group that I run for the podcast that more people are reporting, rashes and problems with the adhesive with the G6 than they had in months and years past and the question came up is has something changed?

 

Kevin Sayer  17:43

Yes, it has. There's a very fine balance. On the adhesive side. We warranty our product for 10 days. We say this as a 10 day sensor, and one of our most common occurrences of replacing a sensor as it falls off, in fact, the most common one so for years, we have studied adhesives and wanted to make an adhesive change that would give patients a better experience and have that sensor last the entire 10 days. And so we did change the adhesive out to something that was more sticky on the one and we are very happy to report that we are seeing a great reduction in the number of sensors that fall off people. So we are delivering on end to the experience. On the other side of that we have seen an increase in allergic reaction to that new adhesive. We have some data on our website. And we have done some clinically based work for those patients to give them some options to whereby the adhesive will not have that same effect that there's some mitigate mitigations that you can make to do that. So if you contact us, again, I believe it's on our website or also you can contact our tech support. There are some clinically based solutions that we can offer.

 

Stacey Simms  18:46

All right, so I will refer people to the website and we'll keep helping each other but I think people wanted to make sure and just get confirmation that something had changed.

 

Kevin Sayer  18:53

Well we did change it we did

 

Stacey Simms  18:54

Dexcom offers the free over patch when people request it you know to help it be more simple. Has that changed at all? Or that seems to be the same?

 

Kevin Sayer  19:02

I believe, yeah, the over patches are the same.

 

Stacey Simms  19:04

Okay, I feel like this is almost like when I used to ask you about Android, but it popped up in my timeline that three years ago, the Apple Watch product came out and it was a huge press release from Apple about this is gonna change your health, this is going to change you know, everything. And in that article was, of course, and you'll be able to see your blood glucose from your Dexcom. They also would hope to get on your watch on your watch.

 

Kevin Sayer  19:27

We're always supported it. We're not direct to watch it yet. That project has has proved to be extremely difficult. The architecture of a watch is different than the architecture of the of the mobile phone. And in the middle of that I believe there have been changes made to the watch architecture as well. We as we've looked at and prioritized our projects and our resources and we look at software things we need to work on. While that project is still on our list, getting more reliability went to patients each and every day has been above that. And this taken some precedent to it, we will eventually get there.

But there's also some interesting issues with the watch that we didn't even contemplate when that release came out. And I'll give you the perfect example. You've got to charge your watch every day. How do you get that alert on your wrist? When your watches charging, and things of that nature, there is a different experience, and different safety features are going to be required to be implemented over time. We're working through it and thinking about it. We aren't ready and in all fairness, as we've looked at resources, if we're picking for example, between G7 and the watch, look, I love to watch you use I use all these tech gadgets all the time, and I put different ones on, we will eventually get there is a lot more complex than we envisioned when we started down the path. Probably the most loyal Apple Watch, customers are Dexcom patients. If you're an apple watch on an Apple phone and use an apple watch those patients use the Dexcom app on that watch a lot. Even through the phone. The watch experience has been a very good experience for our patients who use it

 

Unknown Speaker  21:00

What about other watches like Fitbit or devices like that

 

Kevin Sayer  21:03

we display on the samsung watches or some of the Android platforms now we've had discussions with Fitbit. Fitbit just got acquired. And I think they're regrouping and figuring out where they go. I think it'd be wonderful to offer our patients solutions along those lines, it becomes a question of do you get the whole device safety experience on that display? And how do we label it and what do we do? But these are the things we're looking at and pursuing?

 

Stacey Simms  21:27

Another question I got from a listener was all about can Kevin talk about other Dexcom partnerships with newer pumps, at least new to the US like, Ypsodmed if I'm saying it correctly, and other you know, European and worldwide, pump companies, is there anything new to talk about with those partners?

 

Kevin Sayer  21:45

You know what? We just signed an arrangement with Ypsomed to work with them, their pump will pair with our sensor. It'll be in Europe first. They will bring it to the United States at some point in time. They have also signed an agreement to license, our type zero technology, the algorithm that we have that has been involved in numerous studies around the world and is the basis for control IQ as well. So they will use that algorithm and it will continue to work with our sensor. I don't know all their US plans, I won't speak on their behalf. So we'll see where that ends up.

We do have research relationships with a number of entities getting to commercialization, we'll just have to see these partnerships. You know, I would tell you that the 10 of joint product offering is doing extremely well we get great feedback. The Insulet study has started back up. I look forward to the day when all these things are on the market. Stacey, giving patients the choice to have these automated systems will be a wonderful thing for patients and they've been very patient waiting for us and for our partners to get them out. I think when the day comes it will be fabulous but we cannot pair with every single. It is kind of a hard balance. pairing with every single pump is a lot of work to support in house but we want To be interoperable, that we want to get products out, we really want to get solutions out there. And we're happy with the partners that we have. In the US, I think initiatives like the loop initiative where they're gonna develop an algorithm that could work on a number of pumps and number systems might be a very good option for Dexcom to pair with others because the pairing is done by them in the app, not necessarily by work by us. So over time, the interoperability strategies one will continue to challenge and we are prepared to work with anybody that can enhance patient's lives and help our business

 

Stacey Simms  23:32

it just a clarification question you mentioned Dexcom owns the type zero algorithm, which is the brains let's say of control IQ really are the basis of it if it's used in another pump, if it's in the Ypsomed pump, is it the same exact bit of software? Or do they are there changes or

 

Kevin Sayer  23:50

tweaks? No, I'm I know that Tandem has made changes to the app and how it works, but the fundamental math and the algorithm will more than likely be the same. I can't speak Exactly. To what Tandem’s done, but I'm pretty confident it'll be a similar experience from an accuracy and from a patient perspective is the way it works. And then we're working with our type zero team to develop other algorithms, and advanced versions of what they've learned in the past. We are free to license to others as well.

 

Stacey Simms  24:15

It'll be interesting to see how that evolves. And when we talk about interoperability, I actually have a little bit of trouble with that, because in my head, and I've described it like this before, it seems like it should be more like Mr. Potato Head, right? Like I have the base, and then I get to put the ears on that I want the eyes on that I want the feet or whatever. But it's not exactly that easy, right? It wouldn't be a question of like, grab a Medtronic pump, but I get to slap a Dexcom sensor on or you know, buy or anything like that, right? It's not No,

 

Kevin Sayer  24:42

no, it's not that simple at all. And in all fairness, I think Dexcom has done a better job and design our product to be interoperable better than anybody else. And I can give you a very simple example. I tried to close this many years ago. Our transmitters designed to talk to multiple devices at this Same time to more than one. And that took a lot of time and a lot of engineering and a lot of dollars. And so I raised the question, why are we talking to multiple things? Let's just talk to one. They all kind of like I should know. Well, now think about things. Now you can talk to your tandem pumpers. You can also talk to a phone app at the same time. What a wonderful feature for our patients. And what a wonderful feature as our software changes or gets an advanced feature, that maybe our pump partners or a pen partner or somebody else doesn't have be able to talk to both is a wonderful opportunity for our patients if they want to use both apps. And I think over time, particularly as we look at refining your software experience, it seems to be more important.

 

Stacey Simms  25:41

Last listener question was about compression lows. I don't know if what they're really called. But anecdotally you sleep on the place for the Dexcom is the circulation slows or for whatever reason you get a fake low. I'm sure you're all aware of this. are you addressing it you think it will be cleared up with the G7

 

Kevin Sayer  25:59

I don't know. It'll be completely cleared up for G7, I would hope it decreases because, and I can only speak from a theoretical perspective, the sensor is smaller and the transmitter is less bulky. So there might be less pressure pressed on it. But compression has existed in all sensors forever. I have asked the team to look at other ways to deal with the compression issue and come up with some ideas. And they have some very good ones. It wouldn't be in the first version of G7. But I we've got a couple of thoughts that I won't share, because they're very proprietary. I think we have some good answers for compression over time. The question becomes, though, Stacey, and this gets back to the patient experience. And since your listeners are familiar with us, if it's compression low, do we still alert you and wake you up and tell you to roll over? Or do we guess what your glucose value should be and just keep going? What is much safer is to alert you and wake you up and say you're having a compression error roll over? It's not a real low. But do you all want to be woke up for with that type of error or would you rather is Wait for a half an hour and say I was just compressions con, these are the kind of things we shouldn't talk about, and contemplate within the engineering group, which is why these guys want to work here. It's really interesting.

 

Stacey Simms  27:10

Hey, there's so much information that is coming out at ADA that we haven't even touched on. And I you know, as you listen, I will link up a lot of the information. There's the G6 two year anniversary study. There’s a lot of information about the hybrid closed loop partnerships that's coming out. I'm curious, the launch of the G6 Pro. Honestly, I'm not sure that too many listeners of this podcast would use a product like that, whether it's blinded or they just get it temporarily from their their provider. But talk to us a little bit about that. Who is that for? What was the demand like for that?

 

Kevin Sayer  27:42

Well, the demand on that has been huge. And the demand starts in the physician offices. And literally, if you think about Dexcom, our pro product right now is a g4. It's not even G5 and our physicians have never had the opportunity to be able to say to a patient, let me Let you have a CGM experience similar to what you would have if you're one. So for your audience in particular for patients who would like to know what CGM is like the physician can output a unit on it. This is exactly the G6 system. The G6 Pro is a transmitter to sensor in a single box. Patient wears it and it's disposed of at the end of the sensor where period, the reason you have the blinded app physicians have asked for it. We think for patients unblinded is obviously the way to go because they can learn what to do with their own management. But the fact is, for a physician, there's a baseline check as to, hey, how's my treatment working? Or how's this treatment working in a type two non insulin taking patient in particular, you can put that sensor on blinded for a 10 day period and get a readout and go, wow, this is working.

the audience is very much from an educational and therapeutic perspective. In the professional environment. We have priced it in a manner to whereby the physicians can really acquire this at a reasonable cost. It will also be you know, at As you look at what's happened with COVID, as well, taking newly diagnosed patient and telemedicine, you can put a patient on this professional system. And if the patient uses the date alive, the physician can use the data live. As we've gone through the the virus situation, the the learnings we've had from our physicians about how CGM actually works. It's been really interesting. I mean, I get phone calls, do you know I can watch my patients from home I didn't know you could watch your patients from home and clarity, we reduce the three hour time lag, we've got near real time. And that's helpful. So you know, in this new age, where you have telemedicine and all the information that physicians need to get, we think G6 pro fits in very nicely and we want patients to be able to have that experience and learn what index comm is like rather than than other things and learn the information they can get ultimately for us as timing range becomes the measure. Now let's take it a step further. If you're a physician and your key measure Simon range Your patient doesn't wear a sensor, you can just put a blinded Dexcom on him, send him home for 10 days and come back, download it, you can read it. And you know what that patient assignment ranges. It has a number of great uses for us and will be a platform for growth going forward, we think is going to be very, very, very important.

 

Stacey Simms  30:16

I didn't realize it hadn't been updated since g4 that makes a lot of sense. No. And then before I have to go one more quick question. Last time we talked, we talked about CGM in hospitals. I know how long but how is that program going? What is the feedback? And can you talk about how widespread it's been

 

Kevin Sayer  30:33

able to come? We've had interest from many, many well over 100 hospitals close to 150. And we're in quite a few of them. The interest has been great. It has taken more time for us to do this than we would have thought when we started. when everything started happening very quickly. We were getting requests from hospitals and people didn't quite know what CGM was but read about it that we literally thought 10% of our production might be going to the hospital and it hasn't been that great of a demand. We've learned the intricacies of hospital operations with respect to it and GE, we're sending you free phones fuse the sensor and you guys don't want to use them because you don't know if they're HIPAA safe. We've had to learn all these steps along the way. But where are we got it, and where it's up and running? Well, the results have been everything we'd hoped for the sensors performing the way we want it to it's accurate. We haven't seen major problems due to drug interference, which was a concern that has been an FDA concern over time, the ability of the healthcare providers to monitor from in the hallway, a finger stick administered by a healthcare professional, somebody timed it for many other days, about 15 minutes because you got to gown up, put on gloves, go stick the finger, okay, if you're doing a finger stick an hour, you're saving 15 minutes of nurse time every hour. For every patient, they don't have to stick the finger on. There's been a huge reduction in PPE.

The patients are getting off the insulin drip faster because their diabetes can under control more rapidly. are leaving the ICU faster. They're going home healthier, all the outcomes. We hope for happening, the speed of which the uptake has been slower than we would like, but it is still going on and people are still expressing interest. And I, I think based on the places where it has been, I don't think anybody's going to let it leave. Particularly while we sit and anticipate what could possibly happen in the fall, we are going to gather data. And when we can gather data and get enough data to whereby there's a meaningful submission, or at least a discussion, we'll take that and we'll discuss it with the FDA and decide what next steps would be to get the labeling and to get a hospital usage approved. I think the products always belong there. I went through an experience personally with my mom many years ago, she had a heart valve replaced and it took them longer to get and she had type two diabetes. It took them longer to get her glucose under control than it did to get her heart valve and all the other pieces of her recovery then it was fascinating. I mean, they kept coming in adjusting insulin dosage, taking it up taking it down. And I kept saying I have something we could put on her to make It's easier, and no, no. So I do think it belongs here. It's a great use for the product.

 

Stacey Simms  33:06

That's really interesting. Well, Kevin, thank you so much for taking some time to talk to me about this. A lot of things happening at once. And I always appreciate your time. And when you start the G7 trials, I know that we all go through the official channels, but you know, call me We'll get my son and

 

Kevin Sayer  33:24

hey, we appreciate I always love to come on on your show. We always have a great discussion, and I'm happy to deal with any questions that come up. You know, I don't hide.

 

Stacey Simms  33:33

Yeah, I appreciate that very much.

 

Unknown Speaker  33:40

You're listening to diabetes connections with Stacey Simms.

 

Stacey Simms  33:46

For information at Diabetes connections.com. As always, at the episode homepage, we do have a transcript as well if you prefer to share it that way if that's helpful for people that you know, easier to read it than to listen and just to be crystal clear, if it wasn't paying 100% choking. At the end of that interview, I could no more get into a clinical trial by talking to Kevin Sayer than I could, I don't know, get Benny a better wrestling birth by going to the NBS Linux department of his high school. I mean, I don't know about you, but that's not how it works for me. And we joke all the time being Penny never been able to get him in a clinical trial. We keep trying, I'm signed up all over the place. Maybe the word is out on what a pain in the butt I am. But I would love to get him in one of those. So we'll keep trying, but interesting information there. And I will link it all up at the episode homepage. Tell me something good in just a moment. Let's talk about baseball. But first diabetes Connections is brought to you by Dexcom. And you know, when we started using basal IQ a couple of years ago, that's the Dexcom G 610. to pump software program. I was so happy with it. And then with control IQ. It's just amazing. less work. better results with diabetes with a teenager. I mean, Benny always liked seeing his face GM numbers on the pump, right? We got that pretty much right away with tandem. But honestly, it was just more of a cool feature he really took us pump out to just look at it. There's some secret sauce, though, in first basal IQ and now control IQ, right? That just really is incredibly helpful. His range time and range has increased significantly, his agency has come down significantly, you know, I don't talk about specific numbers. Holy cow. Of course individual results may vary. To learn more, go to Diabetes connections.com and click on the Dexcom logo.

 

Intel Tell me something good this week. This is a cool story that just because it's a cool story on its own, but I was alerted to this because in one of the Facebook groups I'm in, a mom posted a picture and this picture had to be at least 10 years old, maybe 1215 years old, of her son on a baseball team with another little boy both kids with type one and the other little boy was just dropped By the Milwaukee Brewers, Garrett Mitchell was selected 20th overall in last week's draft. Now, there's a lot of information here about baseball, I don't know. But I like this sentence, many heads a left handed hitter projected as going into the top 10. So the early take is the Brewers got a gym who dropped further than expected. And then they go in about like, well, his power numbers, and there are questions about this. But Wow, I'll link up one of the articles where Garrett Mitchell is quoted, and he really did talk about it. He said, You know, a lot of these teams, it did come down to diabetes, what teams want to deal with that, you know, what teams are comfortable with that? And he says, personally, I don't really see this challenge. You know, there are a lot of people who questioned him, but he says, I know how my body works. I know what I need to do. And he has been dealing with it since he was a young child. And I think it was really interesting that the story I'm reading this from isn't from a diabetes publication. It's not a profile on jdrf. There's lots of those and I hope we hear much more about Garrett Mitchell, but this is just a regular sport. story where the diabetes stuff comes way, way, way down in the article, so congratulations to him. Thank you for those of you who alerted me to this on Twitter, which is always great if you see something good like this, please tag me let me know. And of course we are efforting an interview with Garrett Mitchell because why not? I would love to talk to him. If you have Tell me something good story. If your child is starting to play sports, and I mean, forget about hitting a home run, you know if they just get through the game, and you don't run on the field. I'm kidding, but I'm not kidding. The parents know what I'm talking about. Right? If you have a Tell me something good story big or small. Let me know this is my favorite part of the show. Every week. I love sharing your stories. You could email me Stacey at Diabetes connections.com or just tag me on social media and tell me something good. Before I let you go more Ada stuff is coming. I am excited to have interviews on tap with a lot of other technology companies and we'll be sharing those in the weeks to come. There's a lot of stuff to unpack here. I also want to let you know and this is kind of selfish and I hate that these are all the same time every year but I guess this is a word season so I want to give you a heads up that the we go health and the independent podcast awards are coming up in a thankfully it's not a vote everyday situation I hate when people do that just just awful that they asked you to get your listeners to vote every single day What a pain in the ass for I'm not gonna win anything with that attitude. But I have been nominated for a we go health award on the voting for that, which is basically just please go ahead and like me on the wiegel Health site will open up in July. And I will be putting that out on social media, the independent podcast awards. We've been very lucky where some wood that I can knock. We have been named a top 10 Health podcast. That's a nationwide independent podcast award every year since the podcast launched and I love keeping that streak going. So I will be asking for your help there as well. Again, it's just a vote once please. And there's lots and lots of podcasts to vote for. Same with legal health. There's lots of categories to vote for. So if you know somebody else in the diabetes community or there's a podcast Guess that you like you'll be able to nominate and vote for them there. So more to come on that just thank you very much. I hate asking but that's the only way to do it. All right, thank you to my editor jump, you can start audio editing solutions. Thank you very much for listening. And Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Unknown Speaker  39:25

Diabetes Connections is a production of Stacey Simms media. All rights reserved. All wrongs avenged

 

Transcribed by https://otter.ai

Melissa and Kevin Lee played an important role in what we know now as NightScout and the DIY movement.  Their interest was initially sparked because they wanted to have children. Melissa lives with type 1 and Kevin has an engineering background. They jumped in with many other "hackers" to create what we know now as Nightscout and other DIY systems. By the way, the Lee's children are now ten and eight!

Check out Stacey's new book: The World's Worst Diabetes Mom!

In Tell Me Something Good, wedding bells for a T1D couple – which spark some fun stories from others in the community.. and an update on a change my son made after our last episode.

Join the Diabetes Connections Facebook Group!

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Sign up for our newsletter here

Listen to our "Steel Magnolias" episode about pregnancy, type 1 diabetes and community featuring Melissa Lee, Kerri Sparling & Kyrra Richards here.

Find all of the "We Are Not Waiting" episodes of the podcast here

#Wearenotwaiting

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Episode Transcription:

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods, real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:19

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:25

This week, Melissa and Kevin Lee played an important role in what we now know is Nightscout and the DIY movement. It's kind of hard to remember but those early days very different. Melissa remembers what it was like the first time Kevin for husband followed her numbers and acknowledged what a hard day she'd had.

 

Melissa Lee  0:45

And I didn't realize I just looked at him and he said, this is how every day is, isn't it? And like I still get chills thinking about it. They say it was the first time that anybody outside of me or another person with diabetes looked at I said I see you. This is hard.

 

Stacey Simms  1:02

Melissa and Kevin were interested initially in the DIY movement because they wanted to have children. Their kids are now 10 and eight. We have a lot to talk about.

And tell me something good wedding bells for a couple who live with type one. And that sparked some fun stories from others in the community. plus an update on a change my son made after our last episode.

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of Diabetes Connections. I'm so glad to have you here. I'm your host Stacey Simms we educate and inspire about type 1 diabetes by sharing stories of connection. And this is a story of connection. Melissa and Kevin have so many wonderful anecdotes to share about finding the DIY community about those early exciting days about the projects they worked on. And we talked about what it's like as a married couple to go from not sharing any information. about diabetes to being some of the first people to be able to see CGM information, you know, how does that change your relationship? How do you talk about it? And we'll get to that in just a couple of minutes. It was great to talk to them.

I wanted to bring you up to speed first, though, on something that I mentioned. Well, Benny mentioned it when I spoke to him last week. So Benny is my son, if you're new, he was diagnosed right before he turned two. He is now 15 and a half. And we talked last week about changing a bit of our routine, he has been taking a long acting insulin called Tresiba for almost two years along with using an insulin pump. It's a method called untethered, I'm not going to rehash the whole thing. I've talked about it many times. But if you are new, that will link up more information in the show notes and you can go back to listen to last week or previous episodes with Benny about why we did that. bottom line he was using so much insulin because of puberty and maybe some other issues genetics who knows that it was very, very helpful to add an additional basal source that took the pressure off the pump inset, but Over the last month, his insulin use has gone way down. And that is because of three factors. He's probably coming out of puberty, he has lost a lot of weight. And we are using the control IQ system, which we noticed right away meant we were doing far fewer big corrections and we just used it so much less insulin on it.

So during the show that the last endocrinology appointment, Dr. V, had said it was fine to go off the Tresiba, no problem, do it when you want if you want, and Benny said that he did want to do that. So as I'm taping this, it's probably about eight days since we made this switch. It takes about two to three days everybody's a little different to get Tresiba out of your system. It works a little differently than some other long acting so it takes longer to get out of your system. We did have a rocky three days but we were used to that we knew that was coming and just as I had hoped control IQ the software system with the tandem pump and the Dexcom just has worked even better than it did before and I don't talk about specific numbers with my son. That's not how we Roll, but just to give you some perspective has been about 70% in range, you know, it goes up, it goes down very happy with that number. He has been 80% in range, I think 82% in range for the last seven days as an average and two days where he was like 98% in range. It's crazy. So I don't think that'll continue because that's how diabetes works. Right? Don't you find sometimes it like lulls you, when you make a switch, it always starts out great, and like a week or two later floor like the rug just pulled out from under you. So we'll see.

I want to get to Melissa and Kevin. But at the end of the show, I'm going to talk a little bit more about some changes we've made recently, in addition to Tresiba, we have changed how we use sleep mode. So stay tuned at the very end. I'm going to talk about that. But I know not everybody uses control IQ. So standby

Diabetes Connections is brought to you by Real Good Foods. It's really easy to compare and see what we love about Real Good Foods. If you put them side by side to other products, I mean their breakfast sandwiches, six grams of carbs, 18 grams of protein compared to like, you know 2636 grams of carbs in other products and a lot less protein and a lot more junk. If you look at their cauliflower crust pizza, you It's amazing. Not every cauliflower crust pizza is actually low in carbs, you know this you got to read the labels. So Real Good Foods, nine grams of carbs in there cauliflower crust pizza. Some of the other ones have 3540 grams of carbs. I know everybody eats low carb, but you know, you want to know what you're getting. You want to really be able to see, well if I'm eating a cauliflower crust pizza, you might as well eat you know, a bread crust if you want 40 carbs per serving. Real Good Foods is just that they are made with real ingredients, you know stuff you can pronounce. It's so easy to find. They have that locator on their website, it's in our grocery store. It's in our Walmart, and you can order everything online, find out more, go to Diabetes, Connections comm and click on the Real Good Foods logo.

 

My guests this week are part of the history of the diabetes DIY movement. longtime listeners know that I am fascinated by the we are not Waiting crowd. And I can't say enough about what they have done for our community. In fact, I'm actually trying to put together an oral history. And we've talked to a lot of people since 2015. When I started the show about this movement. The big problem is a lot of these wonderful engineering and tech types are a little spotlight adverse. You know who you are, but I'll get there. I did reach out to Kevin and Melissa, because, you know, I've talked to Melissa a few times about pregnancy and type one and other issues. I think that the show we did as a panel with other guests about pregnancy in type one and Steel Magnolias is frankly, one of the top 10 episodes, not because of me, but the guests are so amazing. And that night gets so much praise on that episode, people, you know, women pass it around. I'll link that up in the show notes.

But you know, I hadn't heard Melissa and Kevin's story, and their names always come up when we hear about the early days of the DIY builders. So our talk today is about much more than the technology it's also about marriage and kids and diabetes and sharing data. You know how that affects your life. Quick note, Kevin now works for Big Foot biomedical and Melissa works for tide pool. If those names don't mean anything to you, if you don't know what those are, or you know what they do, might be a little bit of a confusing interview. There's some presumed knowledge here, I will put some links in the show notes, you may want to go back and listen to previous episodes about the we're not waiting movement or just check out the links. Also, it is really hard to get people to acknowledge the difference they've made. These are all very modest people. God loves them, but I do try. So here's my interview with Kevin and Melissa Lee,

Melissa and Kevin, I am so excited to talk to you two together. Thanks for making time to do this. I know how busy you both are.

 

Melissa Lee  7:43

Thank you for having us on. This is a fun thing to get to do.

 

Stacey Simms  7:47

I don't know if Kevin's gonna think it's that fun. We'll see. And I say that because in the small way that I know you you don't seem like you're quite as conversational and chatty is as we Melissa, well, we'll see how it goes. Kevin, thanks for joining us and putting up with me already.

 

Melissa Lee  8:04

Well, you know, he actually is until you stick a microphone in front of his face. Oh, okay. You know, beyond that, yeah.

 

Stacey Simms  8:12

Well, let's start when when you guys started, and Melissa, I will ask you first How did you meet?

 

Melissa Lee  8:17

Oh, this is a story I love to tell. And Kevin's gonna already be like, why did I agree to do this? So this was like 2006 and I spent a couple of years doing internet dating. And you know, I'm very extroverted and and like a go getter. And I had just been on, like, 40 bad days, basically, on the internet. Basically, I was broke from spending money on lots of different dating sites, and I found a free one. But during that one, it turns out that this guy was on it because one, it was free. And two, he liked their matching algorithm that tells you a little bit about why you needed so we met online and then What a year and a half later, we were married. Wow. So yeah, we were married in late 2007. At the time, I was a music teacher. And Kevin, how would you describe what you did in the world?

Kevin:

I was working at Burlington, Northern Santa Fe, just deploying web applications as a contractor to IBM. And then in our early years, you worked for capital, one bank doing infrastructure architecture, and then later for American Airlines doing their instructor architecture. So we like to say, you know, we've been in finance he's been in travel is been in transport. He's been in lots of different fields doing that same thing that I just said infrastructure architecture, which I will not explain.

 

Stacey Simms  9:44

So, Kevin, when did you go from checking out the algorithm of the dating app, to noticing that perhaps the diabetes technology that your girlfriend and fiancé and wife was using, when did you notice that it really could be done better. And then you could do it

 

Kevin Lee  10:02

became a little bit later. And it first I kind of just let her her do her own thing. She managed it. She managed it well. And then as we started to progress, and we both wanted kids,

 

Melissa Lee  10:16

yes, we got back from the honeymoon and I had babies on the brain and two of my bridesmaids were pregnant. And then I have this whole, you know, in our pregnancy podcasts that we did together, I had babies on the brain, but I had this diabetes hanging over me. And I think that that was a huge motivator for both of us. So like mid 2008, my insulin pump was out of warranty.

Kevin Lee

And so that's that's whenever I really started to encourage her and I started getting involved and saying, hey, let's let's go experiment. Let's find what's what's right. Let's look at what else what other options exist and didn't find too many other options but no, we I did switch I switched insulin pump brands and we started talking about this new thing that was going to be coming to market called the CGM.

Melissa Lee

So I got my first CGM within the next year. And Kevin immediately started trying to figure out how it works. So this was the freestyle navigator. And this was like 2009. I think I was maybe already pregnant or about to be pregnant. And Kevin was trying to hack this device.

 

Stacey Simms  11:25

So what does that mean? When you said you started to figure it out? What did you do?

 

Kevin Lee  11:29

Well, it bugged me that the acceptable solution was the we had this little device that had a range of measured in the 10s of feet. That was it. And I had a commute. At the time, I was working at American Airlines and my commute was 45 miles one day daily, and she was pregnant, and I just wanted some sort of assurance that she was safe and there was no way to get that and I just wanted to be able to You know, it was obvious that this center was sending the data that I wanted on the available through an internet connection. How do I get that? Ultimately, that effort was unsuccessful. And that's when we started going to friends for life. And there, that's where we saw I guess Ed Damiano’s connected solution where there's remote monitoring, and we saw the Dexcom. And that's whenever I thought, hey, if that's an option, and so we started looking into the Dexcom and switched over.

 

Stacey Simms  12:39

I'm gonna jump in because I'm a little confused. When you said you said Damiano’s connected set up, I thought that he was showing off what is now called the iLet and the new the bio hormonal insulin pump. What was the Dexcom component to that that you hadn't seen before?

 

Kevin Lee  12:54

So it was just a simple remote monitoring, you know, he needed to be able to as part His research to be able to remotely monitor the patients that were well,

 

Melissa Lee  13:05

specifically, he had an early version of the bionic pancreas had a Dexcom that was cabled to a phone. Oh, and so if you look back at like, 2012 And so like he I remember Kevin holding the setup in his hand and looking at it and being like, you know, this is fascinating. Like, I have an idea.

 

Stacey Simms  13:30

Because at the time and I'll find a picture of it, but it was cable to a phone. And there were at least two insects from the pump. So you had to have the the CGM inset and then you had to have two pumping sets and then the phone cable for the bionic pancreas at that time. Am I thinking of the right picture?

 

Kevin Lee  13:45

No, I really should

 

see all of that.

 

Melissa Lee  13:49

You know, like we're so old at this point.

 

Like, like eight years ago now I wasn't realizing because how have my children are but this You know, I want to say that this was even before we'd have to go back and back with them.

 

Kevin Lee  14:05

Yeah. And that was just the moment that hey, okay, this is another alternative. And we were, we were actually looking to switch at the time because I think that's when the note and I switched.

 

Melissa Lee  14:17

Okay, we had to switch because navigator went off the market in 2011. So this is right around the time, we just switch to that.

 

Unknown Speaker  14:24

So what did you do with the Dexcom ,

 

Kevin Lee  14:26

whenever we noticed that there was a little port that was also used for, for charging and for data, I connected to it and started reverse engineering it sending data and seeing what we got back and trying to get that data off. It was first connected to my little Mac MacBook Pro. And I just had a goal over Thanksgiving to be able to get that data out of the CGM. And it took three or four days and I was able to get basic data out of the system. In premiere, it was just as simple as uploading it, and then visualizing it.

 

Stacey Simms  15:06

So for perspective, and I want to be careful here because I know there were a lot of people working on a lot of different things. I'll be honest with you. I'm not looking for who was first or when did that happen? Exactly. But just for perspective, is this basically the same thing that we then saw, like john Costik, put up on Twitter when he said he got it like on the laptop? Or, like, what would we have seen if we had been sitting in your house that day?

 

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Now back to Kevin answering my question about what does it look like when he figured out how to reverse engineering the free the Dexcom data.

 

Kevin Lee  16:30

Absolutely that we would you would have seen a little text flying by saying this is the the glucose number. Yeah, on the on the computer. It wouldn't have been very exciting to most. And from there, Melissa tweeted out saying hey, we have the data available from our Mac and I guess that's where Joyce Lee picked up on it and wanted some more information.

 

Stacey Simms  16:55

All right. So Melissa, take it from there.

 

Melissa Lee  16:56

Yeah, you know, Joyce has been a real champion as those early days. Why date and so I remember her reaching out to me and saying this is this is really interesting. I want to know more. And in this was the same year that Dana and Scott were bringing their thing to life with what was then DIY APS. This is around the same time, same era in history that, that john Costik was doing his great stuff and with Lane Desborough and the early days of Nightscout, so all of these things were happening in these little pockets, and we were just another little pocket at the time. One of the things that concerned us was whether we were doing something that was going to be shut down really quickly, like there's something that you find knowingly or unknowingly, it's kind of like when you agree to the terms on iTunes.

So when you use these devices, there's something called an EULA and End User License Agreement. And these eu la say, you're not going to reverse engineer this product. And so we were a little cautious about what we wanted to diseminate in terms of like your take this and run with it, but that culture was still developing. And so at the end of that year was the big d-data event at the diabetes mine summit, where there were a few really key DIY influencers sort of in the room. This is where Lane first coined the we are not waiting and, and the next day I was at that summit, and I was hearing Howard Look speak about what had happened at the d-data summit the day before. And I was like, Oh, my God, Kevin has to plug into this. So we want to help this initiative. Like we want to be a part of this. We have so much to offer we this whole remote monitoring setup that he had built for me. And at the time, like by then I think one of the biggest things we have done is Kevin has developed do you want to talk about glass.

 

Kevin Lee  18:51

Yeah, it was just a another way to visualize the data. So Google Glass, I don't know if you remember that. It was a kind of a connection eyeglass. Yeah, in some ways, it was ahead of its time in other ways. It was just a really interesting idea. I got a pair, and I was able to have it alert me when she crossed the simple threshold. And I was able to see historically three hours or 12 hours or whatever it was without having to pull up a web page. It was just kind of always there and on available for me if and when I needed it. So it was just kind of an ambient thing in the background that I didn't feel like a I had to worry about.

 

Stacey Simms  19:38

Interesting. Kevin, I'm curious in those early days, so if I could just jump in. You know, you you don't have type one. You care very much about someone with type one and you're doing this because you care about her and want to make sure she's safe. When you started meeting other people who were doing the same thing. What was that like for you? I know it's chancy to ask an engineer about how they feel but it had to have been nice to get kinship with these other people who basically spoke your language and also understood the importance behind what was going on.

 

Kevin Lee  20:07

Yeah, so that was actually really kind of interesting whenever we first started sharing that we wanted to share it just with a small group of people. And I think it was Manny Hernandez that introduced me directly to Wayne and Howard and a few other Brian Maslisch.

 

Melissa Lee  20:28

yeah, so I like to tell the story that I chased Howard Look down in the hallway after that, and was like, you have to connect with my husband. And then that didn't seem to work. So that's when Manny was like Manny Hernandez, who was the founder of Diabetes Hands Foundation. He is a good friend of ours and he was like, No, I have to connect you to these guys.

 

Kevin Lee  21:15

And so there's this pivotal email thread from January of 2014, where we started exchanging The well, here's the project that I've done and Lane says, Well, here's a project that that we've been working on and we call it Nightscout. And so we, we kind of exchange notes. And then it was a little bit later that Lane, well, maybe not lane. Exactly. But that's when the the whole CGM in the cloud and the Nightscout. Early foundations started to show up on on Facebook.

I think that's whenever another engineer had published the code on GitHub, and started to set appears. Here's how you set it up. Well, there weren't many in my situation, you know, one of the engineers was a parent. And I think we actually made a really great mix. And I think that that's part of what made the successful so one of the engineers working on the project was A father of a type one I represented the spouse and some of the other engineers were personally affected by by type one, and definitely added a different level increase the camaraderie between us. Those are early days we were were on the phone almost nightly. As soon as I get off my my day job, I'd go home and work on the evening job of trying to get the next set of features out or to fix some new fixes. I love to describe this day because throughout 2014 he would walk in the door and he was already on the phone with the other devs from night out. And if I walked in the room where he was working on the computer, I would be like, Hey, Kevin, and then I'd be like, hey, Ross Hey Jason, because I assumed that they were on the phone. Hey, Ben.

 

Melissa Lee  22:56

Like it was staying up all night long. They didn't sleep. They did this all day long. Kevin talk a little bit about the pieces you brought in tonight that from our system that we created, and then we like I, I have two producing diabetes data. I'm not gonna, I'm not gonna claim a lot of that. But I was just plugged into it. If people are familiar today with Nightscout, which many listeners may be like, what piece did they hold in their hands? That was yours.

 

Kevin Lee  23:26

So the the piece that I was so connected with was the what we refer to as the uploader. It was just a piece of extracted the data from the CGM and then uploaded it to the Nightscout website. The early days. I don't know if you remember it was the little 3d printed case with a phone that you got that happened to have a data plan and a wire connected to the the CGM. Right whenever Nightscout first came out, I was I was hesitant to start I mean, this was like the first few months I was hesitant to contribute. I wanted to see What I could do, but as it started to pick up be there, it was obvious that the pace of development that I was doing on my own was not going to equal what the rest of the community could be doing. But then he and I had these other features, which I'll go into in a moment here that I felt the community could benefit from.

So we started having early conversations with Ben and others. How do we fold in functionality that I had into the current uploader, that functionality was essentially the early ability to follow on a native phone app, it was decreasing the size of the packet and uploading more so using less data. It was an Android watch, being able to get the latest data on an Android watch. It was used in camping mode. I don't know if you're familiar with that. But the early days of knights count we had the pebbles that We're kind of Bluetooth connected smartwatch, that use the little EEG displays. Those required you to be connected to the internet. And one of the devs Jason Calabrese had said, I'm going camping next week. And I'm not going to have internet connectivity. And I sure wish that that I could. So I thought about it for a minute. And were able to quickly reconfigure it the existing code to be able to get that data on the watch without an internet connection. So

 

Stacey Simms  25:32

camping mode literally came from a camping trip. Yes.

 

Kevin Lee  25:37

Jason Calibrese’s  says camping trip.

 

Melissa Lee  25:40

So well, and then the code that became xdrip which like thousands of people use today.

 

Kevin Lee  25:46

So that's, that's a great thing about open source community, whatever ideas reverberating off of each other and become more pronounced and it essentially becomes the sum is greater than the whole.

 

Unknown Speaker  25:59

Let me ask about xdrip, though, was it originally called Dexdrip? was that one of the first times Dexcom got involved and said No thank you, or did I miss remember that,

 

Melissa Lee  26:10

that was all part of Emma Black’s history. Emma took the code that Kevin and created and, and created built on top of that to create Dexdrip. And Dexcom did say you can't use our name and became accept yeah that you're remembering correctly. It was a very friendly discussion. And so it was renamed to xdrip.

But you bring up an important point about how industry was reacting to all of us in late 2014. The team at Medtronic actually invited many of the community members who were working on that into sort of the belly of the beast, and to come in and talk to them about the why and the challenges and the what could industry do and and What are we not hearing and just sort of like a meeting of the minds. But what was so cool about this is this is the first time that many of us had met one another in person. So here, people have been working on this for a year or two. And now suddenly, it's a table with Dana Lewis and Scott Lybrand with john Costik with Ben west with me with Kevin, with Jason Calabrese, like we're sitting around a table for the first time and talking with industry as this United Community. So it felt a little less, to me, at least as someone who's been really involved in fostering community, right? It felt to me like there's the start of something here. And that was a really exciting meeting. We like to joke that nothing came of it. I was gonna ask about that. But to me like that was exciting. It was this energy of like, we all came to the table and said like, these are the needs of the community. This is why we need remote monitoring. And this is what we're gonna do next. And you can either help us or understand we'll do it anyway. And so that was that we are not waiting spirit.

 

Stacey Simms  28:08

Well, and that was a very pivotal time. And, Melissa, let me just continue with that thought if I could, it was such a pivotal time, because you all could have said, we are not going to continue without you. Right? We need this. But it seemed to me and again, it's hard to for me, you know, it's funny that it's so long ago now. But it's only four. It's like, it's only five or six years ago, really? The seeds of that community. And you can see it just in the Facebook group with CGM in the cloud and everything else. There's 10s of thousands of people now who are part of this community. You know, did you saw the seeds if it Then did you ever imagine it was gonna get as big as it is now?

 

Unknown Speaker  28:48

Is it crazy to say yeah?

 

Kevin Lee  28:54

to directly answer the question. Yes. And that's where we were actually Faced with a another really tough decision of how do we continue to solve these problems? And we started to see the scalability problem that what we viewed as a scalability problem within the community. How do we continue to support it? And how do we deliver this safely to masses? It was a choice that we had to make of if we're doing the industry and we, we try to do it this way. I don't know there, there isn't really one right or wrong way to do it, but it was just a another way. And we believe that by joining the industry that we could deliver something simple, easy, and we could make it scalable and supportable for the masses.

 

Melissa Lee  29:44

I think those things like those meetings with Medtronic or, or Dexcom, early on. I mean, I remember sitting in Kevin Sayers office at Dexcom and I was there for a completely other reason. I was there on behalf of Diabetes Hands Foundation said and I just like went off about night prayer. But those conversations gave us a really like I want to recognize my privilege in that to be able to be in a position to go sit with leadership at these big diabetes device companies. But let us see that there was a way to bring the change we were doing outside. I don't want to use the word infiltrate because that sounds

 

to infuse what industry was trying to do with community perspective and patient perspective and and the change that we knew was possible. And that resulted in both of us for huge career changes.

 

Stacey Simms  30:43

And we will get to that for sure. Because it's fascinating when you mentioned and you know, we're doing a lot of name dropping here. And if you're if you're new to this and you've listened this far, I promise. I will be putting a lot of notes on the episode homepage and you can go back and listen to other episodes, but there's a lot of names that have Gone By. And a lot of names that you mentioned are people who either founded or were instrumental in the founding of newer independent companies that came out of at least as I see it, this DIY wave that happened in the mid 2010, that you all are talking about. And now you both, you know, you work with these companies and for these companies, but I want to continue this the scalability, as you mentioned, because it's remarkable that even as all those companies, I mean, Big Foot tide pool, you know, even as these companies came out of this, you're still servicing all these, and I'll call us lay people. I mean, I, you know, most of the people who were early adopters of Nightscout or things like that seem to have some kind of engineering background or something that helps software makes sense. But then the floodgates opened, and it was just easy for people or easier than it seemed for people to do that. Kevin, was there a point that you kind of remember looking at this and thinking, you don't have to be an engineer.

 

Kevin Lee  31:59

That's actually part of the reason why I continue to contribute with Nightscout and in the early days, we decided we were going to go ahead and launch on the Play Store. So we set up an account. And you know, instead of having to go out download the source code, compile it, we distributed it is via the channel that users were used to receiving their their app from. Another thing that we introduced was the barcode scanning. So what we found out was set up of the app was a little more complex than it needed to be. And so we introduced the the concept of barcode scanning to set that up,

 

Melissa Lee  32:42

which now exists in the commercial like every time you start a new transmitter on a Dexcom system today, you scan a barcode on the side of the box. Kevin did that. I remember, I'm not claiming but next time did not develop that on their own. I am just claiming Hey, we.. yes.

 

Unknown Speaker  32:59

out Yeah.

 

Stacey Simms  33:02

Yeah, that's wild. I did. Yeah, I was thinking about that. Because now that's, of course, that's how we do it. And Melissa, I know I'm kind of jumping around here, but I have so many questions. I wanted to ask you earlier. What was it like for you? At this time? You said, Well, I just provided the data. I mean, what was it like for you during this time other than, you know, just popping in and saying, Hey, honey, how were the phone calls going? It had just been exciting and a little nerve racking for you. What was it like,

 

Melissa Lee  33:30

by my count, and again, Not that it matters? I think I was the first spouse to be followed.

 

Sounds creepy, doesn't it? I was the first CGM stocks 4000. Now, um, but one of the things, it did a few things for me, and I'll never forget one day I was in the kitchen and I've got babies and toddler and lay like it had just been a day right when you're a young mom, and you've got Little ones and it has just been a day and Kevin walks in and he said, and you've had a really hard day and I just looked at him like, Are you an idiot? Yes.

 

And I was like, What are you talking about? And he was like your numbers. Oh, and I just looked at him and I didn't realize I just looked at him and he said, this is how every day is, isn't it? And like I still get chills thinking about it Stacey I like it was the first time that anybody outside of me or another person with diabetes looked at me and said, I see you this is hard. And I didn't even know like I probably said yes, you idiot I've had a hard day

 

Unknown Speaker  34:46

I doubt it.

 

Kevin Lee  34:48

I had worked on some some code to make Nightscout available via personal assistance. Think the Alexa and Google Home and, and other things. And while I was experimenting and testing it, it became very clear that I was not allowed to ask what what those values were.

 

Melissa Lee  35:14

He was like, it’ll will be so handy. And if you're in the middle of cooking and you've got like, you know, stuff on your hands, you can just ask it. But like, what you don't do is you know, your wife snaps at you. And you say, Alexa, what's her blood sugar right now? Like, that is not what you do. So now the story I was going to tell Oh, Stacey, you're gonna love this one. So this is like early 2015. And I am the Interim Executive of a nonprofit and I'm representing patients at this endocrinologist a meeting, and I'm alone in a hotel, and I had been out with all these endocrinologists and we've had tacos at a bar and I have no idea what my glucose was, but I had calibrated my CGM with probably tacos all over my hands. I go to bed. Well, this poor man, I'm in Nashville. He's in Dallas. This poor man is getting

 

Kevin Lee  36:09

the blood sugar was reading his 39. Yes, for those who don't know, is the world. The CGM can read anything below that he registered

 

Melissa Lee  36:19

as low. I have my phone on silent because I've been out with all these professionals. So he had called me 18 times. It didn't go through Sunday night disturb so far in two hours reading, like a 39. So hotel security burst into my room. Mrs. Lee, Mrs. Lee, are you okay? Do we need to call an ambulance, this string of expletives that came out of my mouth? I will not repeat on this good family show. But I was so mad and you know, I'm calling him and I'm like, I'm like 130 right now. Fine. by that same token, I have lots of like really lovely stories where You know, I'm alone in a hotel in New Jersey, and he wakes me up in the middle of the night to say, you know, wake up and eat something, honey. So, yes, there is a good story, but I must prefer the story where he had security break into my room. Oh, my God over over what nights? That was it.

So, you know, but to your question, we really were on the very bleeding edge of understanding things that you actually already deal with, with your son today and that people deal with today in terms of how will we actually establish boundaries on how much of my data you get to react to and for all the times that it is a benefit? Where are the times where it's like, no, I actually have to cut you off. We're now like seven years into him following my data. And so in some ways, I think we both see where people will get to when following data is the norm you know, should it ever scale by Live in terms of now, he doesn't look at my data all the time. Now he knows when to respond when it weren't so good. But it made me feel understood. It also made me feel a lot safer to know that just have somebody else watching my own back. I'll be celebrating 30 years with type one this year and celebrating is, you know, you've been

 

away there. But like to know that like somebody else is just there to pick up a little bit of slack you have for someone like where you are, it can be hard because I know when teams don't always appreciate or show their appreciation in the same way. But there is an appreciation for the fact that that you're there to pick up a little bit of slack just as much as there is resentment and issues with boundaries. And in times when they really need to just shut your assets off. And so I feel like we're just a little bit further down that road in some ways, you know, we'll let you know when we have it all figured out. But Exactly.

 

And what's right for us as a couple is not necessarily going to be right. For every couple, you know, there are couples that really feel like, no, my data is mine. And I don't trust you not to react to it in a way that's going to make diabetes any harder for me. And I think that that's what we 100% have, that I'm very fortunate to have is that I trust Kevin, to react to my data, the way that I'm comfortable with him reacting to my data.

 

Stacey Simms  39:33

So both of you, through this process wound up not only having two kids, but you made big job changes. And you now both work in the diabetes sphere. And I hope you don't mind I'd really like to talk about that a little bit. Because I mean, you mentioned the beginning. Listen, you're a music teacher. And you're right, your background, your music professional. You are Bigfoot for a couple years and now you are a tight pool and you're basically I'm going to get a But you're helping tide pool so that they can better train people and kind of explain to healthcare professionals and the public to kind of I look at that as translating, is that sort of what you're doing there?

 

Melissa Lee  40:12

Yes or no. So for instance, I know your family has just started with a new piece of diabetes technology. There were certain training modules that were there to support you. There's certain learning materials that were provided to your child's doctor so that they understood what they were prescribing. There's a user guide that comes with the stuff that you use in your family today, if you're buying things from companies off the shelf, and what the DIY community when we're talking about scalability, and how important that is to each of us having a knee accessibility, scalability availability like these important, how do we bring this to people in a way that they will actually be able to access tide pool announced about a year ago that they were going to take one of the DIY, automated insulin dosing systems and actually bring it through FDA review. Part of that is it has to have the kind of onboarding and support materials that your insulin pump he buys a medical pump and has today. So I am leading the development of all of those materials for both the clinics and the doctors, as well as for the end user to learn the system.

 

Stacey Simms  41:30

And Kevin, you're still a big foot. So you're a principal engineer there. What excites you about what you're doing there? Is it again about the accessibility because I know you know, Bigfoot is not yet to market but people are very excited about it.

 

Kevin Lee  41:41

Yeah. Accessibility is one of the large parts and reliability going through the DIY stuff. It's happening at an incredible pace change is happening there and things break things don't always go the way that you intended. There has to be balance there somewhere? Well, you have to have services. I mean, look at what happened recently with server outages and different companies, you have to be prepared for how am I going to support this time, I'm going to keep it running, you know, whatever the it is, it's that the reliability, we're all we're all human, that's humans behind the scenes, making the the changes and improvements that we rely on. So how do we do that safely and effectively as possible to minimize the impact and continue to increase the value to the user?

 

Stacey Simms  42:37

This might be a very dumb question. But Kevin, let me ask you, Melissa mentioned the the new software that we're using, and she's talking about control IQ from tandem, which is the software that we've got now. And there are other commercial quote solutions. There's other commercial systems coming out when you look back at all the stuff that the DIY community did, and is continuing to do. Do you feel like you guys really, really pushed it along? I mean, I gotta tell you and I know nothing. And I never even used Nightscout and people laugh at me. But I think we would never be close to where we are commercially. Does that add up to you?

 

Kevin Lee  43:12

Yeah, it adds up. It's not for everyone. You know, it is bleeding edge, the community, in a lot of ways drives industry.

 

Stacey Simms  43:21

You I'm not asking you to say specifically without this wouldn't have that. But it just seems to me that we would have gotten there eventually. But I don't know that the people behind Knight Scott and so much of the other things you've mentioned, really either got into industry and help push things along or helps with the FDA. You know, is it as kind of an outsider on this. Can you speak to whether that's true?

 

Kevin Lee  43:44

Yeah, absolutely. I think that it had you I mean, that's the nature of competition. There was an unmet need in the community and the unmet need was was fulfilled.

 

Melissa Lee  43:55

Well, what I would say is industry needs to see that something viability as an idea and so, I firmly believe that many of these things were floating around in companies as potential developments in the pipeline. What the community did with our DIY efforts is say, we are so desperate to this thing, we will just build it ourselves if you can't deliver. And so I think it helps prioritize like I've seen almost every company in the industry actually skip over other things that were in their pipeline to get to these things and reprioritize their own product roadmap to try to deliver. And I don't think it's, I it's not in a Oh, we better get this or the community is going to do it themselves way. It's a, okay, this is a real need, and we should, we should focus our resources on this. A lot of ways it's a playground for industry to concepts, live and die much more quickly in the DIY community than they do and it allows you to to iterate faster and find out what does and doesn't work, open source communities have existed outside of diabetes, obviously, it's a and throughout the last few decades, we've seen what happens in the open source world actually drive change in the industries to which they're associated. And so I think there are analogies to this in terms of like, what happens in the software industry, with personal computing with consumer electronics, so I don't, I don't find it at all odd or ridiculous to say that the DIY community and diabetes has actually resulted in change within industry. I mean, if only if, like you pointed out so many of those names, but we, you know, we're dropping them because we want to see people recognized for their extraordinary contributions, right. But all of those people, many of them have gone on to found companies, invent new things, join other companies. What's your Modeling about open source communities, regardless of field or genre or whatever is that you see that you see new people roll in with new ideas and lay new work on the foundations of code that were left behind and innovate and continue to innovate. And so we will see the DIY community around forever, they will continue to innovate. And we will also see many of those innovators move on into the industries in which they're working. This is a personal choice that they have to make them they'll go through the same decisions that we did. And not everybody. Well, I mean, Dana lewis is not associated with the company. We're not saying that that's an inevitability, right? But it's pretty common. You have to be pretty geeky probably to know of other open source communities. And I'm, you know, Kevin is way more well versed to speak about that, but in the way of fan

 

Stacey Simms  46:56

before I let you go, this all started because you wanted have kids, right? This this is the timeline that you set out from your weight the beginning here, and your kids now they're both in grade school, your daughter's 10, your son is eight. I'm curious, do they know their part in this story? Because it's not an exaggeration to say, and I'll say for you, it's not an exaggeration to say that you wanting to have kids sparked action in Kevin, that, frankly, has helped thousands of people. I know you didn't do it alone. I know. I know. I know. But your kids know the part that they played

 

Melissa Lee  47:31

to a degree like they know that we help people with diabetes. And they take that really seriously. As a matter of fact, when I was changing roles from my role at Bigfoot to my role at tide pool, my daughter's first question was like, but you'll still be helping people with diabetes, like will Bigfoot still be able to help people with diabetes like yes, it's all it's all good. We're all good. We're all still helping people with diabetes

and they've grown up with these things in the sense that we love to tell the story of when our son was about three years old and he would hear the Nightscout song that would was basically the alert that would play. And he knew that when I was low, there was a bag of sour ball candy on the top shelf of the pantry that came down. So he would hear that sound that Nightscout song and that song was sour balls to him and he was “sour balls sour balls!” he  was all in or maybe like two I mean, he was little It was too and so like it became the sour balls song, right? You know, the other day he heard the Nightscout will song play and he said mom who undid that song and I posted something to Facebook. Well basically lane desborough and better that song or found it. I wrote something about like I just set my son down. I said, let me tell you the story of our people and how we came to the valley of silicon you know, which is of course not the way I said it to an eight year old but as you know amusing myself But essentially, you know, there is some of these folks that they literally do talk about uncle lane and Uncle Manny and Uncle Ben and like my daughter thinks she has a lot of uncles. But, you know, so they know that we've helped a great many people. And as they as they get older, and we can sort of expound on that, then I think, well, let's be honest, they won't care.

 

For a while, right? teenagers will be like we shut up about, oh, they'll care.

 

Unknown Speaker  49:30

They just want to know they care.

 

Melissa Lee  49:34

Someday, they'll appreciate it, and a different way, but that's what they know. Now,

 

Stacey Simms  49:40

Kevin, you also said this was about your commute, making sure Melissa was safe. Knowing that Melissa is a very strong and independent woman. Do you feel like she's safe? Did that check that box for you all this hard work?

 

Kevin Lee  49:53

Yeah, absolutely. This is kind of something that she went into earlier, but I really view the monitor. That I've done and the work that I've done is really just augmenting and trying to simplify and make her life easier. We first started dating, I actually told her that you will never find somebody work harder at being lazy than than me. And, you know, that was just the testament of I wanted to automate all the things that are just repetitive and predictable and easily managed to try to get that out of the way. And that comes from the background of operations and managing online sites. Being able to automate those those aspects have helped me feel like it's more safe. And then you know, other times like with with monitoring, it's great to be able to just see that you know, she's about to go out for a walk and then I happened to look over at Nightscout see how much insulin she has on board and where she is and say, you might want to run a temp basal. So it's just there. To try to augment and help her navigate it. And so yeah, it does give me a sense that she's safer because of this.

Melissa

Yeah, that's right. I got really mad at him the other day, he was right. I was like, whatever. And I left the house and I went massively low. I was walking the kids to school. I was like, Yeah, well, fine. So you know, there's that two parents completely unfamiliar to you. And

 

Stacey Simms  51:21

it sounds more like my marriage actually diabetes or not. That's just a component of marriage. Yeah, she was right again. Oh, oh, well, you know, thank you so much for spending so much time with me. I love your story. I just think that there are just amazing people that I hate have diabetes. But I'm glad if you had to that you've done so much for so many others who have it as well. And I really appreciate you spending some time to tell us these things from years ago now because they're really are important as we move forward. So thanks for being with me.

 

Melissa Lee  51:56

Thank you so much for being interested in the story and for help. Others here are cranky, Stan.

 

Unknown Speaker  52:08

You're listening to diabetes connections with Stacey Simms.

 

Stacey Simms  52:14

Much More information at Diabetes connections.com you can always click on the episode page and find out more transcript is there as well. I just adore them. I know the interview went longer than usual, but I couldn't help myself. And as I said in Episode 300, when I looked back on 300 episodes, Melissa really helped change my place in the diabetes community by inviting me to speak at master lab in 2015. That really did change how I felt about where I want it to be helped me find and focus my voice. I really can't overstate that enough. So thanks Melissa, for doing that.

And again, lots of information went by very quickly let them name dropping there in a good way. And I promise I will keep on the Nightscout crew. I may ask some of you as you listen to lean on your friends, I'm not going to mention any names here. But people that I have reached out to, and they're the usual suspects. If you search, we are not waiting, or Nightscout on the website, you'll see some big omissions. So I'll talk more about that on social media, we'll get them as a community. Maybe it's just me, you know, who's fascinated by this. But I do think it's a very important part of our history that we need to document because in a few more years, many of the solutions that people like Kevin were working on are going to be all commercial and all FDA approved. And isn't that wonderful, but I don't want to forget what happened. And I think it'll be great to look back.

Okay, enough about that. I got Tell me something good coming up in just a moment. And then stay tuned. Later, I'm going to tell you another change we made to how we use control IQ with Benny, but first diabetes Connections is brought to you by Dexcom. And it is really hard to think of something that has changed our diabetes management as much as the Dexcom share and follow apps. I mean, what really amazed me we started it when Benny was about nine years old, the decks calm and we got shareable. little less than two years later, and the most immediate change was how it helped us talk less about diabetes. And boy did that come just in time for us because that's the wonderful thing about share and follow as a caregiver, parent, spouse, whatever, you can help the person with diabetes managed in the way that works for your individual situation, and going into those tween and teen years. It sounds counterintuitive, but being able to talk about diabetes less what's your number? Did you check what's your number? You know, so helpful. Internet connectivity is required to access Dexcom follow separate follow app required learn more, go to Diabetes connections.com and click on the Dexcom logo.

 

I am cheating a little bit this week for Tell me something good because while I usually read you listener submissions, I saw this on beyond type ones Facebook page, and I just had to share they did a whole post about people with type one getting married and they wanted Hear the wedding stories. So they started out with a a big Congrats, by the way to Kelsey, her husband Derek, and this adorable picture of them. They're both low at their wedding and they're sipping some juice boxes. And Kelsey is part of the beyond type one Leadership Council. So congratulations to you both. It's a really adorable picture. I'm gonna link up the whole Facebook thread because people share stories like you know, I had my pump tucked into my bra and I didn't think I needed during the wedding or I was a bridesmaid and I had it there and I had to reach in, um, you know, other people who went low trying on wedding dresses. I mean, I remember this. So this person writes, I went low in David's bridal trying on wedding dresses. It's a lot more physical than you think getting in and out of dresses and slips, hot lights and just emotions. My mom had to run across the street and grab a Snickers. I was standing in the doorway of the fitting room and inhaling a Snickers, praying I didn't get any on the clothes, which just added an extra level of stress. I remember a Polish ties into the employee helping me and he was like I don't even worry about it. And he stayed with me to make sure I was okay. Another woman writes my mom came up to me right before we were set to walk into the reception. She told me she had hidden a juice under our sweetheart table in case I went low. I've been diabetic 30 years and my mom still carry snacks for me in her purse. Sure enough, right after dinner, I ended up needing it. And the last one here, being excited, nervous and unable to sit still. I did a long and intense bike ride prior to my evening wedding. Luckily we had a chocolate fountain at our reception and I spent a large chunk of the night at or near it, and this goes on and on. So what a wonderful thread congratulations to everybody who is talking about their weddings and their their wonderful stories of support. And the humor that's on display here is amazing. So I will link that up. You can go and read there's there's dozens of comments.

If you've got a story like this Hey, that's what Tell me something good is for send me your your stories, your milestones, your diversities, your good stuff, you know anything from the healthcare heroes in our community. With cute who put his first inset in to a person celebrating 70 years with type one I post on social media just look for those threads. Or you can always email me Stacey at Diabetes connections.com.

Before I let you go, I had promised to share the other change we made to control IQ. In addition to eliminating the long acting basal that we had used, you know, untethered for almost two years, we decided recently to completely turn off sleep mode. I know a lot of you enjoy sleep mode 24 seven, as we said back in our episode, gosh, in late December, when control IQ was approved in the studies, they called you folks sleeping beauties, because you enjoy that 24 seven sleep mode. But I found that since school has ended, and we're trying to figure out what to do with Benny for the summer, there is nothing really that's keeping him on a regular sleep schedule, and it's gotten to the point where he is now so nocturnal, and I'm hearing this about a lot of my friends with teenagers. Maybe I sound like a tear. Parents go to bed at like four or five, six o'clock in the morning. I walked into his room at eight o'clock in the morning the other day, I wanted to ask him a question. I was like, I gotta wake him up and he was awake can come to sleep yet. You know, it boggles my mind. It's all topsy turvy. And we'll get back into a routine at some point, but I'm not really willing to make a big fuss about it. He's key is keeping busy overnight. I guess his friends are up, I don't know.

But anyway, the point is, he's eating it really weird hours. And when he was in sleep mode, we noticed that it wasn't helping as much right because it doesn't bolus you in sleep mode. It only adjusts Faisal. So if you under bolus for his you know, Pad Thai at two in the morning, it wasn't helping out and true story. I asked him about that. Like, what's this line? And what happened overnight here, were you sleeping He's like, No, I was in the kitchen eating leftover Thai food.

So we decided that his numbers during the the quote, day when he was sleeping, we're hovering right around 90, maybe a 110. I mean, it was very in range, right? No need to mess with that. So I didn't think we needed to add sleep mode. And I did want to predict when he would actually be sleeping. So we just turned it off. And that has made a big difference too.

So I guess the bottom line is figure out what works for you for your individual situation, the weirdo wacko situation, if it's us, but you know, use this technology to benefit you, whatever way that is, if it's sleep mode right now, 24 seven, if it's no sleep mode, it's exercise mood all the time. And it'll be so fascinating to see. And this ties back into the DIY movement, right? It'll be great to see the flexibility that we will get in the next couple of years because, you know, Medtronic had a tie a higher target range, because they were first with the hybrid closed loop. tandem has a lower one Omni pod, we'll have a more flexible target, you can set your own target when they come out with horizon and of course, tandem and everybody else is going to be moving to that direction as well. And it just keeps getting better.

But it gets better because people like Melissa and Kevin Lee pushed and pushed and without these folks, and there's so many of them, of course, right who said we can do it better, we would not be where we are. I truly believe that technology companies would be five or six years behind and if you're new To the show new to the community and you're excited about, you know, control IQ or horizon or whatever you're using. Or maybe you're using, you know, loop off label with Omni pod, I would urge you to go back and check out our earlier episodes from 2015 and 2016. And learn about the really early days of the community, obviously, by 2015. We're talking about things that happened in the early 2000s. You know, I don't want you to misunderstand that. That happened in 2015. But you know what I mean,

okay, obligatory book commercial. And if you've listened this long, you maybe you own a copy of the world's worst diabetes mom, if you own it and love it, do me a favor post about it. The best way to word of mouth about the podcast and the book is always if you could tell a friend post in a diabetes group post on your own Facebook page, you know, I love this book. It's on Amazon, highly recommend it. If you've read it, and you don't like it. Forget that, you know, you know, just recycle the book. It's thanks as always, to my editor, john Buchanan's from audio editing solutions. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Unknown Speaker  1:01:09

Diabetes Connections is a production of Stacey Simms media.

 

Unknown Speaker  1:01:13

All rights reserved. All wrongs avenged

 If you're feeling extraordinary stress because of events in the news, you're not alone. This week, Stacey talks to Dr. Mark Heyman about simple things people with diabetes can do to manage better (and give themselves a break). Dr. Heyman is a diabetes psychologist and the Founder and Director of the Center for Diabetes and Mental Health. He was diagnosed with type 1 while in college.

Check out Stacey's new book: The World's Worst Diabetes Mom!

In Tell Me Something Good – parents going an extra mile to make their kids feel included and a big challenge ends but we'll talk about "T1D 24/7"
This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

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Episode Transcription

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes, and by Dexcom, take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:17

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:22

This week, let's talk about stress. And let's talk about the not so great effect it can have on diabetes. Now you're in a cycle of not just physical issues, but emotional ones, including guilt.

 

Mark Heyman  0:35

The guilt comes from I think a lot of times people feeling different or still don't. They're all alone, and that everybody else with diabetes is doing great. And I'm the one who is having trouble.

 

Stacey Simms  0:46

Dr. Mark Kaman is a diabetes psychologist and founder of director of the Center for diabetes and mental health he was diagnosed with type one in college, we're going to talk about some simple things we can try to do to manage the stress that these days Seems to be unrelenting in Tell me something good parents going an extra mile to make their kids feel included and a big challenge ends

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show. I’m your host, Stacey Simms, really glad to have you along. If you are new, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed with type one right before he turned to he is now 15. I don't have diabetes, but I have a background in broadcasting and local radio and television news and that is how you get the podcast.

This is not the show that I thought I would be doing this week like many podcasters I have an editorial calendar I don't always stick to it, obviously. But I have things planned out and I have interviews that are you know in the can waiting to be aired, but I thought this was a really good Subject to talk about right now. Because as I just said, I don't live with diabetes, but boy, we are all living with stress. And I thought, what are some things we can do to figure out how to better live with diabetes or with you know, whatever your health issues might be, everybody has something, I have my own autoimmune disease, how can we just take care of ourselves in a time where this news, as I said, just seems to be unrelenting?

So I put in post in a Facebook group Diabetes Connections of the group, which I hope you're in, by the way, if you're not, please join it. You know, I was really worried about her everybody was holding up. And so we talked about self care. And we had a really nice thread of comments. Of course, that's still there in the group. If you haven't seen it yet, take a look at your own, maybe get some advice from it. But I also I decided to call in the experts, and I very much appreciate Dr. Heyman jumping on with me. We hadn't talked before. He was more than willing, and I'm sure we'll have him back on again, and I'll get to his interview in just a minute.

But first Diabetes Connections is brought to you by One Drop and One Drop is diabetes management for the 21st century. One Drop was designed by people with diabetes. For people with diabetes. One Drops glucose meter looks nothing like a medical device. It's sleek, it's compact, it seamlessly integrates with the award winning One Drop mobile app, sync all your other health apps to One Drop to keep track of the big picture and easily see health trends. And with a One Drop subscription you get unlimited test strips and lancets delivered right to your door. Every One Drop plan also includes access to your own certified diabetes coach have questions but don't feel like waiting for your next doctor visit. Your personal coach is always there to help go to Diabetes connections.com and click on the One Drop logo to learn more.

My guest this week is Dr. Mark Heyman. He is a diabetes psychologist and a CDE and the founder and director of the Center for diabetes and mental health Mark was diagnosed in college right before I mean immediately to weeks before he had a long planned trip to Paris, and he talks about that we get to that at the end of the interview, and I asked him a little bit about his diagnosis story. But I wanted to talk to mark about how we can handle the mental load that has just been relentless all of this year, I'll come back at the end of the interview and just tell you a little bit more about how I've been handling things I've done some things I think are good. And some things I know haven't really been helping, but we'll talk about that after the interview. Here's my talk with Dr. Mark Heyman.

Dr. Heyman, thank you so much for joining me. I'm so eager to hear what you have to say. And I know you're busy. So thanks for jumping on.

 

Mark Heyman  4:37

Thanks for having me, Stacey. Appreciate it. How are you doing?

 

Stacey Simms  4:41

I know, that probably wasn't the first question you expected as the psychologist but, you know,

 

Mark Heyman  4:45

how are you doing these days? You know, I'm hanging in there. It's you know, I think that it's a strange time to be a psychologist as well as to just be someone living in this world. You know, we're, you know, we're all kind of trying to process the news on a daily basis. And, you know, I have A 16 month old middle daughter, so trying to take care of her and juggle my work and childcare and kind of all of the stress there. So I think overall, I'm doing pretty well, but definitely am feeling the stress and stress of what's going on with COVID. And with the rise and with the the unrest that's happening right now. So thank you for asking,

 

Stacey Simms  5:20

Oh, my goodness. Well, it is, as you say, it's such an extraordinary time. And there's really no words left anymore. It's such a cliche, right? We all get those emails in these challenging times in these extraordinary times. But as you said, we've had this COVID situation for months now. It's sort of built on low boil, and I think we kind of learned to live with it in the background. And then of course, the events of this past week. Protests, riots, questioning a lot of people, even if they're not physically doing things and leaving the house, trying to figure out, you know, where do I stand? What do I want to say? We're all on high alert. Where are you telling people that you're speaking to to, to kind of I don't want to say Step back, necessarily, but maybe break it off into smaller bites, what do we do?

 

Mark Heyman  6:05

Yeah, I think there's a couple of things that we can do. The first is recognize that everything that we're feeling right now is normal, that anybody else in that same situation would be feeling would be feeling unsettled and unrest, feeling stressed about, you know, what's going on in the world right now. I think oftentimes, we have these situations where we feel we're feeling something and we feel guilty for feeling it, I shouldn't feel stressed, I shouldn't feel I shouldn't feel x. And I think that taking a step back and recognizing that, you know, these feelings are really normal. The next thing is really to talk to other people and to be able to vent to have some have a sounding board table to get your feelings out. Because that doesn't necessarily make the feelings go away, doesn't make them better. But certainly to be able to share about other people and get get affirmation and get validation for those feelings, is a super helpful thing that we can do as a way of processing And then also taking a step back. And, you know, recognizing that Yeah, the world is in a in a tough spot right now. But also, we don't have to over engage with what's happening. We have we taking a step back and taking a break from social media sometimes just that taking a break from the news can be a really helpful thing to give yourself some perspective. So that when you dive back in and learn about what's what's going on in your car, take start thinking about what you might be able to do to help the situation. You can see that from a fresh perspective.

 

Stacey Simms  7:33

Yeah, I think especially in a time right now we are we are being challenged to pay attention. And you know, and I can only come to this through the lens of what I have, which is a white suburban mom, right? You know, we're being challenged, pay attention. You know, learn, speak up, let other people know what you're thinking. But that doesn't mean be on twitter. 24 seven, that doesn't mean you have to watch all of the news is that what I'm kind of hearing you say

 

Mark Heyman  8:01

Yeah, I think that one thing that we think is that if we that we want to be in control, not necessarily of the situation, but certainly be in control of our feelings and be in control of our, our environment. And I think that one one thing that one way that people try to get control over those things, is they do something called over engage, they engage with the news, and they end they get involved with it, because they feel like the more that they know that and the more that they see the the ever changing landscape, the more control they'll have. And I think that that's a it's a certainly a valid point. But there's also some of the downside to that. Because Because as you're following Twitter, you know, constantly, it's stressful, and you're constantly looking for the changes, and that's stressful. And the reality is, is that on a minute by minute basis, nothing's changed. Nothing's changed in a sense that is going to really probably change what you do or how you react and so yeah, take take a step back and and recognize But over an aging doesn't actually help with your stress and sometimes they can actually make your stress worse and you know, increase it as well.

 

Stacey Simms  9:11

All right, let's bring diabetes into this because that's really you know, this is all about here on Diabetes Connections. And I don't live with diabetes, but I am I'll be honest I'm worried maybe it's a mom thing and I see the people in my Facebook group and I'm we're part of this larger community you live with type one. I mean, stress is bad for anybody but on top of type one diabetes. I'm gonna sound like a hypocrite because I was talking to this with my husband last night and he was pointed out I live with an autoimmune condition. I have ulcerative colitis laughing at me like why are you worried about diabetes you have to take care of yourself to which I really not, I'm not eating great. I'm not exercising like I normally do. So again, bringing back the focus to diabetes, but I guess any chronic condition you live with type one. Are you feeling more stressed? On top of diabetes

 

Mark Heyman  10:02

Yeah, I definitely am. I'm definitely feeling more stressed because I mean for lots of reasons one is that you know, I you know, I'm a stress eater so when you know when I when I'm stressed out and when I'm around food like that's that's one of my coping mechanisms for better or for worse and so that doesn't do great things for my blood sugar's also just stress in general is definitely impacting my blood sugar's but I'm seeing you know a lot more variations than I had before as well as sleep certainly my sleep isn't great because of the stress right now and when when out sleep while my blood sugar's definitely are hot running higher which makes me not feel great but also makes me more frustrated. So you know I'm a I work with people with diabetes and help them manage their stress. I certainly have a lot of those same stresses and so it can be a challenging a challenging thing to balance. One thing that I've done to really, really kind of helped myself is a couple of things one I had been really intentional about exercising. Luckily, I have a little bit of flexibility in my schedule and so I'm able to exercise on most days and I find that starting my day off that exercising helps my blood sugar's and also helps my stress. Also just cutting myself some slack and being kind to myself around my blood sugar's recognizing that, you know, I'm doing everything that I can to manage them the best that I can. And sometimes they're not gonna cooperate. And that's true anytime, but especially to when we're in a time of stress, where with all these other variables going on, just, you know, being kind yourself and giving yourself some grace and some slack can be really helpful and recognizing the time will pass. And that that will that may be a time where we can be much more intentional about our diabetes management, but also, it'll be smoother sailing, hopefully, because the stress won't be a compounding variable there.

 

Stacey Simms  11:53

Well, and that's such a great point because I was going to ask you and you pretty much answered it, but you know, when when someone With with tight diabetes control or someone who really is trying to manage Well, you know, if they have a very stressful time like this and their management, I'm gonna put this in air quotes, you know, slip. So you're seeing higher numbers or more variation. And then I think a lot of people have have guilt on top of as well. How do you deal with the guilt and not blame yourself? You mentioned trying to like dial back and see the bigger picture, it's not gonna last forever. Is that one of the things you'd recommend?

 

Mark Heyman  12:29

Yeah, I also think that, you know, connect with the community, whether that's on Facebook or Twitter or Instagram or in real life you can and recognizing that everybody else is going through the same thing and everybody else is having, you know, more erratic blood sugars right now. It's really valuable because the guilt comes from I think a lot of times people feeling different or feeling like they're all alone, and that everybody else with diabetes is doing great. And I'm the one who is having trouble and that's why I try to be really Open about you know, the challenges that I have with my blood sugar's like with like with my patients off kind of take out my phone and show them my CGM graph and show them that my blood sugar's are nowhere near perfect, because it makes them feel like you know, it takes some of that thing of that guilt away of recognizing that Yeah, I can certainly make better choices sometimes. But diabetes has a mind of its own and being okay with riding those waves is is critical for our mental health. Because if your only metric of success is keeping your blood sugar between those lines, and yet the only way you can not have stress in your in your diabetes life is by having perfect blood sugar's you're setting yourself up for failure. So we need to have a different way of looking at it.

 

Stacey Simms  13:45

Every once in a while mark, I'm just I'm stopped. I I can't even imagine what it is like to to live with type one just so much that you have to do and I have somebody you know, I have my kid in my house that I've we've accepted for 13 and a half years and everyone's While I keep thinking, gosh, it is really such a burden. But that's neither here nor there. You know, but just to hear you put it like that. I'll probably take all of that out.

 

Mark Heyman  14:08

But the way, let me say something there is, I actually try, I actually encourage people not to use that word Burg, because it kind of becomes a self fulfilling prophecy. You say diabetes is hard. It's such a burden. And you're right, I'm not gonna argue with you there. But then you, but then we won't talk about how big of a burden it is. It kind of gets it makes it it snowballs and grows and becomes bigger. And I think that when we say, you know, we have all of these things going on, we have diabetes, and COVID, and the George Floyd and all of all of these confounding things. And we say in diabetes becomes even bigger, a bigger burden. It's almost like this expectation that it should be, and sometimes it is, sometimes it's not, but we don't want to have people get to a point where they say, Well, I had diabetes and therefore this automatically means that you know, You want to I always give people the space to be able to, you know, see whether it's a burden or not, but not automatically assume that's going to be.

 

Stacey Simms  15:08

I love that. And I'm always working on being better at language. And I really appreciate that. You know, it's, it's, it's one of these things where, you know, you want to help and every once in a while, you know, you really, I slip on that, so I appreciate it. Um, but, but Okay, so but let's keep going on that right. Okay, so I'm a caregiver, I guess a little bit less so because my son is 15. And it's like when he was two when I was doing everything with him. Any advice for me, in addition to not standing around saying this must be such a burden for you? How can I upload, right? I mean, which he's doing great. He's got his own way to manage stress. We're talking a lot. He does exercise quite a bit, which has been really helpful. He's connected with friends, but as a parent or caregiver or spouse, any advice for us so that we're not putting more stress And the person we're trying to help.

 

Mark Heyman  16:02

Yeah, I think I think take a step back and recognize that you know, that he has it, he's got this taken care of and that you're certainly there to help him in whatever way that you can. But from what you're telling me, it sounds like he's doing really well, doing really well without responsibility. And so, and you know, when you're in, but certainly kind of the same thing about, you know, over engaging on Twitter around the protests right now. I think that over engaging with your son around diabetes, especially when there's not a whole lot you can do right now. I mean, because you're doing really well. That's add stress to you. And so if you're able to kind of take a step back, take a step back and not over engage with it doesn't aggravate him, but also gives you some space to recognize and also gives you space to recognize that but also see that he's doing well and give you the confidence that you need to continue to get that debt back because as she grows up and it goes to college Sunday Jimmy great scope for you to have.

 

Stacey Simms  17:02

We're working on it.

 

Mark Heyman  17:05

It's a never ending process.

 

Stacey Simms  17:08

That's great advice. Um, what are some small changes that you might encourage people living with diabetes in these crazy times to do?

 

Mark Heyman  17:18

Yeah, so a couple of things that I would recommend, I mean, just like just a simple tip is, you know, one of the things that is that people have really struggled with, that I've been talking to, over the past three months when we've been in quarantine is kind of the routine has been pulled out from under them, so they don't have to go into work anymore, they may not be able to go to their favorite restaurant or go to the gym. And so and diabetes can actually be a great grounding tool, because, you know, diabetes takes routine. And so making it so keeping keeping your diabetes or TF right now can be really helpful one for your management, of course, but also your mental health because if you know that every morning, going to check your blood sugar, change your CGM site every Thursday or whatever that was Is it can kind of give you some some grounding with it within your day. That's number one. Number two is do your best to stick to a fixed irregular diet. Especially, I mean, I know that this is a little bit late coming, you know, two or three months into this. But, you know, we talked about people who are who have really are having a hard time with blood sugars because they're home now and there have been a food all around them and so finding ways to kind of to to keep on eating healthy to the best of your ability and in a way to help you manager manage your blood sugar's can really, obviously make your blood sugar's more stable, but also help you manage the stress around those blood sugars. And then the third thing and this is one of my favorite tools that I that I use all the time I use it personally it also I also recommend to my patients to use is mindfulness. And what mindfulness is, if you don't not not familiar with it is being aware of your experience in the present moment without judging it. So You know, right now I feel stressed. And just recognizing Yeah, I feel stressed. You're not judging it, nothing, nothing good about it by being stressed. It just is. Right now I can tell you right now my blood, my blood sugar is 253. So I'm on the higher side. And I could I could look at that and say, I can't believe it's that high. It's, you know, I'm, I must have done something wrong. I'm an awful person with diabetes, and I just can't manage my diabetes, right? Or I can look at my blood sugar mindfully and say, Okay, well, I'm gonna look, my blood sugar's to 33. That's neither good nor bad. I feel a little frustrated with that. But that feeling of being a good or bad and just be able to recognize what you experience, because if you're able to do that, it gives you a little bit of distance from it, and doesn't let you get wrapped up in the story of what you know. What does that 253 mean about me? What is that frustration mean about me what is you know, whatever I'm experiencing mean about me because we all experience things all the time. We have thoughts and feelings and bloodsuckers, then You know, whatever all the time and be able to recognize that notice them without putting a story behind them can be really, really helpful. I think that's really also helpful for what's going on in the world. You know, recognizing your emotions and your thoughts and recognizing that those are normal experiences, but you don't the judge, you know, if you feel sad, if you feel angry, that is what you feel. And that's okay. So I'm a big fan of mindfulness. I could talk about it all day long. It really diabetes. But I think it's a really, really helpful tool, especially when things are overwhelming like they are right now.

 

Stacey Simms  20:39

I'm trying to remember I read it, but I read somewhere recently, and it's exactly what you're saying is you know, when you are feeling out of control, and you're feeling very emotional and you're feeling angry or sad or stressed, you know, to kind of breathe into it, and let yourself feel it. And that was a revelation to me. It has helped me so much it just kind of calmed me down to hear that that was okay to do. And I guess that is a bit of mindfulness.

 

Mark Heyman  21:05

Well, exactly, because because humans don't like to feel uncomfortable about anything. We don't like to feel physically uncomfortable. We don't like to feel emotionally uncomfortable. And so our go to strategy with those things is avoidance. We avoid, you know, you could think about doing your life you know, you want to have you have to have a difficult conversation with your husband or your kid and you put that off, you avoid it because you don't want to do it because it's not you're not going to feel good. If you go to the dentist and take them for granted. Because definitely not going to get and what would happen if you recognize that you're scared to go to the dentist or that you're that you're uncomfortable having a conversation, but you do it anyway. And notice the thoughts and feelings that you have when that happens, but you don't judge them. You just notice them and say right now I'm feeling really nervous. And that's okay because that's that's that's what anybody in my situation would feel. It doesn't mean anything about me. It just means that I feel nervous. And doesn't mean that comfortable. But it's just a recognition of what my experience is right now.

 

Stacey Simms  22:09

I don't know if you can answer this, and I'm a little uncomfortable asking, but I think we should talk about it. You and I are not. We're not people of color. Yeah. And so I don't want to say I don't want to try to put myself in somebody else's shoes like that. But I cannot imagine the stress right now. In the not only in that community, but in the diabetes community for people of color. Yeah, I mean, you because we can say, you know, turn off the news or be careful about this. But I think it is to the point right now, where many people and again, I'm probably saying something stupid here. So please forgive me. This is my perspective from where I sit right now. But you know, you can't turn it off. It's part of who you are. I'm wondering if you have any advice, perhaps for that community?

 

Mark Heyman  22:54

Yeah. Yeah. I don't think that I mean, I would be the only advice that I have, and I'm not sure this is great advice is to keep to keep talking. I think that I, what I've seen on this in the social media community is with people of color as well as people, you know, people, other people in the community, it's a lot of support, and a lot of like, and a lot of one of one, one, a lot of wanting to listen. And I certainly want to listen, I want to understand better because I know I don't understand, and I can't understand and I really want to try, but but I and it's going to help me to understand better if people of color in the diabetes community, continue speaking, and continue letting me letting us know what they want us to hear. Because I'm all ears.

 

Stacey Simms  23:49

We mentioned a few small changes that you might be able to make any big changes that you'd like to see people kind of work their way up to.

 

Mark Heyman  23:57

I think that can mean continued. This is a general But continuing to learn to learn about these issues and just continue and continue to have a thirst for knowledge and understanding around them, I think that I'm at that's, I think that's the best thing that we can do right now. And then really the most effective thing because that will hopefully not trickle but really expanding into bigger changes that we can all be a part of, and that we can all be we can all be helpful with. But I think that for our mental health, I really think that small changes are the best way of going about this, and then really trying to taking one day at a time and one one change at a time. You know, change is the big changes are so overwhelming, and they oftentimes feel impossible. And so breaking them down into smaller changes, just like we've been talking about with you know, maybe a bigger goal in mind. So maybe the question is not necessarily what what are the big changes but what are the bigger goals that we have for our mental health around diabetes, for diabetes management for our, for our inclusion, and what are the small changes that we can make that are moving us towards that goal. And certainly I can't tell you or anybody else what their what your goal should be. But I think that I think that defining that goal and really taking some time to think about that can be helpful in in helping you to define the small things that you need to make in order to get there.

 

Stacey Simms  25:27

Before I let you go, and maybe I should have started here since it's our first time talking. Let's talk a little bit about your diabetes story because you were diagnosed in college, right?

 

Mark Heyman  25:36

I was it was 21 years ago on Monday. So I was I just celebrated or just memories I should say my guy ever my 21st I aversary on Monday.

 

Unknown Speaker  25:47

Correct is beer. Sorry about that.

 

Unknown Speaker  25:50

Legal?

 

Mark Heyman  25:53

Exactly. Yeah. So I was 21 when I was diagnosed that it was the end of my third year of college. I was at UCLA and No, I was for the for probably a month before I was diagnosed I was getting I was not feeling well and just kind of getting progressively sicker and sicker was all over the, in the typical symptoms. The problem was is I had this dream of going to France. I've been studying French for a long time. And I got I got an internship at the US Embassy in Paris for that summer. And I was, and I really didn't want to go the doctor because I was scared that they were telling me something was wrong, and I couldn't go to France. And so I put off going to the doctor for a long time. I couldn't tell you how long but it was a you know, something a couple of weeks. And finally got to a point where I just I was walking to class one day, last week on June the first 1999. And I couldn't go anymore. I'm like, I have to, I got something's got to change here. So I ended up going to the Student Health Center and I took a finger stick and it's at high. And I was like, well we know high, medium, low. By Tapi, that bad and the doctor has struck me in a chair and said Don't move. So we call the paramedics and they stopped me to a gurney. And the problem is that I was at UCLA and UCLA the Student Health Center is as at one end of the quad of a quad, but there was no road access. So the the angels had to park across the other end of the quad. And I had to be wheeled across the entire quad in front of, you know, the entire school to go to, you know, into the journey to go to the hospital. So once you tell you Medical Center, and we've diagnosed there, the next day, I had an appointment with my new endocrinologist and Peters was on call that day. And so she was she became my endocrinologist and spent a couple hours with me the next day and teaching me about diabetes and you know, giving me insulin and she's at the edge like, you know, there's other questions I can answer for you is like, well, I'm supposed to go to France in two weeks. Without hesitation like Well, of course your vote. So I want to tear it to each actor by diagnosis. I want to prepare us. I had no clue what I was doing. I would email her every couple of days my blood sugar's, but like it was, I mean, on the one hand, it was the best thing that could happen to me. It gave me the confidence that I needed to know that diabetes was not gonna stop me from doing anything. On the other hand, I was flying blind. And I survived. I was just fine, but it makes for a good story.

 

Stacey Simms  28:27

It's a great story. Wow. And how was the How was the internship? diabetes aside? Are you glad you went?

 

Mark Heyman  28:34

Oh, yeah, it was awesome. I mean, the internship was, you know, it was it was government work. hope we'll put it that way. Like I got, I got to live in Paris for the summer and you had a awesome apartment, the middle of the city and got to go and travel all around. And it was it was unbelievable.

 

Stacey Simms  28:51

Sounds like a once in a lifetime. I'm so glad you were able to go. Yeah. And then how did you decide that you wanted to work in the field that you Now, I mean, how do you get from being diagnosed in college to, you know, helping other people with diabetes with their mental health?

 

Mark Heyman  29:07

That's a funny story. So I kind of towards the end. So I majored in political science in college. And so as I was leaving college, after my diagnosis, I realized I didn't want to be a lawyer or didn't do, I didn't want to pursue anything kind of in that realm. And I came to the conclusion that I wanted to go into psychology, and a part of me wanted to do something diabetes related. I didn't, I was lucky that when I was first diagnosed, I was I was doing okay, psychologically, I didn't have a whole lot of big challenges other than kind of the normal diagnosis stuff. But I was really interested in you know, how this affects other people. So I did some research, and realized I wanted to become a psychologist, but not specifically around diabetes. However, to get into graduate school in psychology, it's really competitive. And I use a story. And so diabetes him like a good story to tell about how I wonder what people with diabetes and so I took That story, not really thinking that would ever come true. And it kind of did. I went to and I did research in diabetes, I saw patients who had diabetes, and I realized Not only do I love doing it, but it's also a huge need. And so, you know, I love it. It's a lot of fun, and it's really challenging. But I feel like I can use my own personal and professional experience to really make a big impact in people's lives. It's wonderful.

 

Unknown Speaker  30:27

Okay, and I have to ask you, you said you have a toddler. You have a baby.

 

Mark Heyman  30:31

Yeah, I have. I have a 17 month old. Yeah, it's wonderful. I was born last January, and now she's, she's walking and she's just starting to talk. And it's so cute, but it's a lot of work. Oh, that's fun.

 

Stacey Simms  30:43

have you all been, you know, at home for the last couple of months together?

 

Mark Heyman  30:47

We have. Yeah. So even though we had childcare we had my parents are in town here. So my parents were helping us out a couple days a week and we had some nanny help. But once this all happened, we kind of isolated ourselves entered just now getting back into letting my parents take care of her again. So, which is a great relief. But it's been, it's been a lot of fun and a great blessing to be able to spend time with her over the past couple months, but it's also it's taken a toll on, you know, my work and my I mean, my ability to do work that I need to be doing. So it'll be good to when we can get back into a more normal routine, hopefully real soon

 

Stacey Simms  31:25

as we start to wrap this up, you know, we've we've kind of, I guess we've scratched the surface on managing stress and diabetes, it really is a never ending issue, is it?

 

Mark Heyman  31:34

No, it's not. I think that we have I think that we have a lot more questions and answers here. You know, especially both both with Russell diabetes, as well as, how do we live it live in this kind of crazy world we're in right now, as well as living in this crazy world with diabetes. And so, you know, I wish that I had all the answers, but I think that we need to keep asking the questions because without the questions, we're not going to get any answers.

 

Stacey Simms  31:59

Mark, thank you so much. Spend some time with me. I'd love to have you back on to answer maybe some listener questions and go through more of this. But thank you so much for your time.

 

Mark Heyman  32:06

Oh, you're so very welcome. Thanks, Stacey.

 

Unknown Speaker  32:13

You're listening to Diabetes Connections with Stacey Sims.

 

Stacey Simms  32:19

I'll link up some more resources about mental health and diabetes, including Mark's website. And I said I was going to talk a little bit about some things I've been doing. I'll tell you the best thing that I have been doing to manage this stress is walking my dog. I walk my dog just about every day, and we don't walk particularly quickly. Boy, she would love it if I would run with her. I'm not a runner. And we are very, very fortunate to live near Greenway. So I'm able to escape. It feels like an escape, I promise. I mean, it's just green, and it's usually pretty quiet. It's getting very hot here. I'm in Charlotte, North Carolina. And most people who walk and run do it very early in the day or later at night. I don't mind it so much and I'll go out you know, 1011 o'clock in the morning. They have the place to myself. I'm careful with my doggie and we make sure she has water and all that stuff. Don't worry about her. But walking the dog listening to podcasts, sometimes listening to nothing really helps. And on those walks, I do not listen to news. I do not listen to news podcasts. I do not listen to serious issues. I listen to stupid comedy podcasts, like Game of Thrones podcasts, and some other fun ones. You know, pop the group, maybe we'll make a podcast list of things to listen to when you want to distract yourself.

Another thing I do that I do think helps is about half an hour before I go to bed. I try to do an hour but I'm kidding myself. About half an hour is I disconnect from Twitter and Facebook. I'm in bed, you know it's late. I'm seeing so much later than I was before this, you know, it's almost midnight, but I'll stop looking at the news. If I'm not really ready to go to sleep. I'll read a book for a little while or I'll play Solitaire on my phone. But I'm done. Sometimes I cheat. I mean, sometimes gosh, there's been nights you know, especially last week where I just I felt like things were changing moment by moment and I needed to see and I know that wasn't healthy, but I couldn't help it. I needed to know that was tough, but I know a lot of you feel the same way. And then the things I'm doing that are not so good as I'm definitely eating more junk and eating more than I was before. That was the worst for me. Honestly, back in April, I think April, I kind of felt like, ah, who cares, we're going to be indoors forever. No one's gonna see me again. And I'm just gonna wallow in this and I eat a lot of really bad junk food. And I've been drinking more alcohol, which is really unusual for me. And you'll laugh. I mean, drinking more alcohol means I'm drinking like once or twice during the week. I usually have like one or two drinks on the weekend. And that's it. But those are things that I've noticed that I'm doing because I'm stressed out.

But doing this podcast helps me immensely hearing your stories. Being able to tell some stories and having something to do right. Having something to work on is really valuable. So let's get back to it. Tell me something good. I love that in just a moment.

But first Diabetes Connections is brought to you by Dexcom. And we started with Dexcom back in the olden days before share. Yeah, in 2013. When Benny started using the Dexcom share it. So trust me when I say using the share and follow apps makes a big difference. Benny and I set parameters about when I'm going to talk to him about diabetes, how long to wait, all that kind of stuff. But it helps us talk and worry about diabetes less. If he's at a sleep over or away on a trip when things are back to normal. It gives me so much peace of mind. It also helps if I need to troubleshoot with him. And this is what I love. We can see what's been happening over the last 24 hours and not just at one moment. The alerts and alarms that we set help us from keeping the highs from getting too high, and help us jump on those before there a big issue. Internet connectivity is required to access separate Dexcom follow up to learn more, go to Diabetes Connections.com and click on the Dexcom logo.

 

And tell me something good this week, I was scrolling through Facebook. I'm in a ton of diabetes groups and I mute all of them because otherwise it looks like diabetes book to me, right? It's everything. It's relentless. So I mute the groups and then I will Want to see stuff? I go back and look, I saw this in a Dexcom group and it really caught my eye. I will post the picture of it in our Facebook group for Diabetes Connections. So Dan writes, my seven year old was feeling crappy about being diagnosed and wearing a sensor. So I did what needed to be done and made him feel better with my permanent sensor. Just the outline color to come. His reaction was priceless. And yes, I cried.

And this is an amazing tattoo. It's a I mean, it takes up his entire upper arm like elbow to shoulder and it's an octopus, which I'm assuming he already had. And then the sensor is kind of in the octopuses. tentacles. tentacles. That's right, right. So it looks it just looks amazing. And then people in the group, of course, started chiming in with, you know, with really positive comments for him, but also, you know, hey, I have a tattoo or I have this idea. And people started talking about diabetes tattoos. And then somebody said, which was what I was thinking because it does CG six on it. What are you gonna do when you're on the g7 in a few months, and Dan said, I don't know. Maybe another tattoo Somebody else said no, that octopus has seven more tentacles, just put it there. And I guess he's gonna come back and show the truly finished product. But it to me it looks finished already, but I guess there's color coming so hopefully we'll do a revisit and we'll show you the finished tattoo then and a follow up

and I guess kind of a wrap up to something that I shared. I think I only shared this on social media, the diabetes family connection, the T1D 24/7 challenge. This was for the entire month of May. And the diabetes family connection puts on different programs they put on the diabetes camp in my area. These are the guys behind Project 50 and 50. Last summer were two guys with type one summited the highest peak in all 50 states in 50 days. And while there was a an injury and an accident, they did finish and so it was pretty incredible stuff. But their 2024 seven was a challenge that asks people to move every day for the month of May. They said you know no days off for managing T1D no days off during this Challenge. And there were some rules and interesting little things that of course, they want the people to maintain social distancing. And it was a fundraiser as well, they had a Spotify playlist. One of my favorite things about this is the warnings we all got because this playlist was not moderated for explicit lyrics. As I said, these are the guys who put in our diabetes camp. So a lot of parents on their list. We appreciate that heads up you guys. So congratulations to the diabetes family connection for a really big and well done fundraiser. I'm sure they'll be doing more like this and some of them are in our Facebook groups. So we will continue to spread the word.

If you have a Tell me something good story, let me know email me Stacey at Diabetes connections.com or, you know, just give me a shout out on social media and we will get it on the show because it's my favorite part of every week. So tell me something good. If you're listening as the show was first released later this week, the American Diabetes Association Scientific Sessions is going to be kicking off this is the atheist conference for the a DA and it is their first virtual experience. What does that mean for you and me? Probably not much. I have never been to the scientific sessions I was thinking about going this year. But of course, it did not happen. But this is the time when a lot of studies come out. This is when a lot of the companies that we all follow release big news. So please stay tuned. I'm going to try to follow as much as I can on social media. We do have shows planned in the weeks to come with everybody that you would expect. I'm really excited to be able to share some of these studies. Some of these things are embargoed. But after the Scientific Sessions, I would say probably by next week, this time, I think we'll all have a better idea of where the study's on technology stand, and probably one or two surprises because every year something pops out from this thing that's either a breakthrough study or something that didn't work out and completely stopped or you know, somebody from outside the ADA scientific session says, Look at me over here, so we'll see what happens. But I hope you'll follow along. I'll do as much as I can to give you the information now, and then go in depth with the newsmakers As they come on the show in the weeks to come,

thank you to my editor john bukenas from audio editing solutions. Thank you for listening. I hope you got something valuable out of today's show. I hope you'll continue to engage and let me know if I can help what you need what you want to hear. You know, I made fun kind of earlier in the show about these are challenging and difficult times. You know, man, they really are and we need each other more than ever. Thanks for being here. I'm Stacey Simms. I'll see you back here next week. And until then, be kind to yourself.

 

Unknown Speaker  40:34

Diabetes Connections is a production of Stacey Sims media. All rights reserved. All rights avenged

 

Transcribed by https://otter.ai

In-depth with a teenager who lives with type 1.  Stacey interviews her son Benny, who was diagnosed just before he turned two. They talk about Control IQ, explaining what diabetes is to people who don't know and what he does these days for sports and other activities.

Check out Stacey's new book: The World's Worst Diabetes Mom!

Benny answers listener questions and looks back on 13 years of T1D.

Join the Diabetes Connections Facebook Group!

In TMSG – graduation good news, two popular diabetes books get an update and more

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Sign up for our newsletter here

The "Pink Panther" Book update

Think Like A Pancreas update

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Use this link to get one free download and one free month of Audible, available to Diabetes Connections listeners!
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Episode transcription: 

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes. By Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:20

This is Diabetes Connections with Stacey Simms

 

Stacey Simms  0:26

this week in depth with a teenager who lives with type one, okay, it's my son Benny. We covered a lot of ground here answering your questions including sports, what he tell his teammates when they travel for sports and stay overnight.

 

Benny  0:41

I tell them that nasal spray thing - Baqsimi if I don't wake up or if I pass out, do that and then go get coach.

 

Stacey Simms  0:47

We talked about feeling self conscious about diabetes gear, what he remembers about being a little kid with type one and his feelings about the new Control IQ system. I think this interview was a good idea?

Tell me something good graduation news two popular diabetes books get updates and more. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of Diabetes Connections. I am so glad to have you along we aim to educate and inspire about type 1 diabetes by sharing stories of connection. If you are new Welcome, my name is Stacey Simms. I am your host, my son Benny, who you will hear this week was diagnosed right before he turned two. He is now 15. My husband lives with type two diabetes. I don't have diabetes at all. But I have a background in broadcasting and local radio and television and that is how you get the podcast.

Before we get to Benny and oh my goodness. Like I've already said I'm hoping this was a good idea. I think he has good information to share. It's a little odd to interview your own son. But before we get to him, I have some great news of my own to share the world. First diabetes mom, my book that's been out for a couple of weeks now won an award, my publisher sent me an email. And by now I've probably shared it over social media, as you're listening to this spark publications announces that the world's worst diabetes mom has won an award of distinction as part of the 2020 communicator awards. This is part of the Academy of Interactive and visual arts. I'm really excited about this.

Of course, it's not just about the writing, but about the design of the book. And we work really carefully on that the cover alone, we went back and forth quite a bit, but then inside to make it really easy to read. And a nice experience. I mean, oh, my goodness, I was who knew so much went into things like this. I mean, when you think about it for more than a minute you get it. But Wow. If you've ever been involved in any kind of book publishing, there's a lot of steps to it. So it's very exciting to see all of our hard work rewarded with this award. So thanks for indulging me and letting me talk about it a little bit. The book has really been an incredible excuse. For me, and I hope if you've read it, you've enjoyed it. I hope if you haven't read it, you'll consider giving it a chance. You can always learn more, of course at the website Diabetes connections.com. But the book is for sale on Amazon paperback ebook, you know, Kindle and audiobook which I married.

And if you're listening to this episode as it first airs on Tuesday, the 26th of May, then tomorrow night I'm actually doing a world worse diabetes mom event with jdrf a couple of the southeast chapters got together we're doing a zoom presentation all about it, sharing our mistakes and mishaps what we learned from them and why they're just the best way to go right? You got to make all the mistakes when it comes to diabetes or parenting in general. And I'll put more information about that in the Facebook group and on social media. I'd love to have you join us.

All right, my conversation with Benny in just a moment but first Diabetes Connections is brought to you by One Drop.  Getting diabetes supplies is a pain. Not only the ordering and the picking up but also the arguing with insurance about what they say you need and what you really need. Make it easy With One Drop, they offer personalized test strip plans plus you get a Bluetooth glucose meter test strips lancets and your very own certified diabetes coach. Subscribe today to get test strips for less than $20 a month delivered right to your door. No prescriptions or co pays required. One less thing to worry about not that surprising when you learn that the founder of One Drop leaves with type one, they get it One Drop gorgeous gear supplies delivered to your door 24 seven access to your certified diabetes coach learn more, go to Diabetes- connections.com and click on the One Drop logo.

 

My guest this week was pretty easy to book because I know his schedule. He lives in my house. He is my 15 year old son. And if you've listened to the show for a long time, you know I really try to balance how much I share about Benny's experience with type one. It's a balance of, you know not oversharing to compromise his privacy, but also sharing them To help people, he's always been a really good sport about it. And we've really weighed and measured over his entire life because he was diagnosed at 23 months, how much to talk about him. I mean, even really before that, because I was on the radio when he was born. I mean, both of my kids, I was a local TV reporter when I was pregnant with Lea, my daughter, and I was in radio, I was at WBT where I worked for a decade doing the morning show there. I think I was there for a year before I got pregnant with Benny. And so my listeners went through that process with me. You know, they saw me out at events and it was a whole big deal about, you know, how much are we going to talk about how much are we going to share, and when he was diagnosed with type one, and my listeners wanted to learn more, we had to go through it all over again.

So I err on the side of sharing less, which may strike you as bananas because I just talked to my book where we talk about all our stories and our family stuff. But I really do I mean, if you look at a lot of the mom bloggers out there, and especially the Instagram people, you know, I really don't share our day to day. I don't think that's fair to him. I'm saying all this I'm sorry for the big lead up. Because it's hard for me to interview Benny, it's hard for me to kind of push and probe for more. He's funny, as always, he gives great information, I think, of course, he is 15 years old.

A couple of quick notes to that. 15 years old, and really goofing around on the microphone. There's probably more editing than usual in this episode. So please forgive us if parts of it sound a little choppy, although I'm sure my editor john, you can smooth most of that out. But really, there were times where I really I just, we were goofing around so much, I had to cut it out. And there's a little bit at the end to give you a taste of that. And I mean, the very end of the show, I included it's not really a blooper, but it's just oh my god, what he was doing with the microphone.

Also, he does say this is the only correction I'll make. We talked about Control IQ and he says he's in range 80% of the time. I wish. It's still excellent. It's closer to 70% of the time, which is wonderful and it's certainly a lot less work. We talk about that a little bit too. But I have to correct that he is not in range 80% of the time. And the only other thing is listening back to this. I don't want anybody to misunderstand. We are mean to each other. I mean, I call him a couple of mean names. It's just our relationship. I mean, it's kind of the way we pick on each other. If you don't know us, too well, I'm just a little worried that you might think we're really mean to each other. I think you can hear that. It's all in good fun. We are so fortunate to have a great relationship. But it's been a while since I had him on the show. And you all had a bunch of questions for him. So I asked, he answered. Here's my conversation with Benny.

Stacey

So how are you holding up? I'm good. All right. Well, we got lots of questions for you. From listeners and the Facebook group, you started on Control IQ at the end of January. And we were well past three months now. Use any perspective Any comments? What do you think Vinnie? You'd

 

Benny  7:55

No, it's much better than it was before cuz I'm in range. Like 80% of the day?

 

Unknown Speaker  8:02

Yeah, it's wild. What have you noticed in terms of me?

 

Benny  8:06

I'm curious if you're much more now you like, Is it working? Is it working? Is it working? No, I'm not.

 

Stacey Simms  8:15

Any tips or tricks? You don't bolus when you're on the higher side, right? Because we found that that kind of

 

Benny  8:21

plummets you. Yeah. Don't do to see but in Control IQ, it won't bring you up from lows.

 

Stacey Simms  8:27

But you still do to receive and Control IQ

 

Benny  8:29

because I like juice.

 

Stacey Simms  8:31

Cuz you like juice? Yeah. You're an idiot. What?

 

Alright, so you use Control IQ, and you still take a daily shot after Seba, even though your insulin needs have gone way down. Why do you continue doing that your Seba?

 

Benny  8:47

I don't know.

 

Stacey Simms  8:48

Well, you know your mother mentioned you might want to stop and you said no, I thought you had a reason less insulin usage. You mean like in the pump, you don't use the cartridge. You should try it. You're not really using balance. Well, now we have to talk to the endo again and okay. Would you think of the telehealth visit that we did by the way? That was rough.

 

Benny  9:08

It was rough about it. You guys couldn't find any. Oh, yeah, we had probably his first one.

 

Stacey Simms  9:14

And he didn't have clarity and he didn't have to connect up even though the office said that they did. So it was a little weird, but were you okay with just talking to him that way? Well, yeah, I mean,

 

Benny  9:22

it's better in person. Because that our interests are pretty cool guy. Let's get to the questions

 

Stacey Simms  9:29

in the Facebook group, Rodney Miller. Hi, Rodney, who runs bolus and barbells he said Why am I Benny's favorite? strong man diabetic.

 

Benny  9:38

My favorite strong man diabetic actually for your information? Cuz I'm the best Oh, you're those favorite strong man. Oh, all right. Well, we'll see you guys in competition. Maybe I can guide when armwrestling contest. I don't know man. my biceps are massive friends for

 

Stacey Simms  9:52

life. 2021 showdown. Rod me and Betty. Okay. Ronnie says does he feel does Betty feel like having Such a strong advocate for a mom has provided him unique opportunities to connect to the diabetic community.

 

Benny  10:06

Yes, would have never met Rodney. Ernie almost got the chance to meet the rock was very close to that. Brick bassinger those people are pretty cool friends for life is a lot of fun. Justin Thomas, Jeffrey, those guys are pretty cool, too. I don't think I would have really met them without mom. You know, no one's putting us in trials. So you know, is that

 

Stacey Simms  10:30

isn't that funny that we can't get you into a clinical trial?

 

Benny  10:33

I think they it's obvious that they know we're just too cool. They don't they don't want to risk something not working on people that are just so awesome.

 

Stacey Simms  10:41

But we'll keep trying. All right. Shelby wanted to know, when you were younger, what did you say when other kids asked about your pump or CGM? How did you handle the curiosity of other kids

 

Benny  10:52

said I'm a robot. I still say I'm a robot and then I actually explained it. I remember one time a gorgeous went What's this and ripped up my pump? Wow, that was Fine. I don't really remember anything. Besides that.

 

Stacey Simms  11:02

I remember when you were, and this might be the same story when you were in preschool. They told me that you were all kind of like lining up to go to the bathroom or something. And the kid behind you said, Hey, what's that and started to pull on it, and you turned around, and you were like, three? And you're like, that's my diabetes. And you were very straightforward. Like, don't mess around with that. Don't touch that. That's mine. Or I guess, like, touch my diabetes. You're like, but you were always we're very lucky because you were always very straightforward about it very open about it. And you never have seemed to minded

 

Benny  11:36

Well, yeah, no, I don't care. Like if you don't like me, because I have diabetes go away. You suck by God, what am I gonna say? Like, Oh, no, darn.

 

Stacey Simms  11:45

Well, you know, you're not self conscious about it, which I think is, is wonderful and made it easier for us. But I don't know how you teach that to somebody, right? You just have always been that way.

 

Benny  11:55

I just kind of like I need it. Don't touch it.

 

Stacey Simms  11:58

So I guess the answer is you've been very straightforward about it little humor, but mostly not hiding it and saying here it is.

 

Benny  12:03

Sometimes I trick my friends into thinking they're giving me insulin, I disconnect my pump and I give them the pump and they still think it's connecting. They go, can I kill you? I say yes. And then I let them give me like six units, and they think that I'm gonna die. And it's really funny. Why would you tell me that? Because it's funny.

 

Stacey Simms  12:20

Why that is terrible that your pumps all messed up, especially with Control IQ. We think I don't

 

Benny  12:25

do that much anymore. Okay. So like, once, once, once every other month. This is more like a fifth grade thing. Yeah. Please tell me you don't do that anymore. I do it like once. Maybe I did it once with Jackson.

 

Stacey Simms  12:37

I'm gonna kill you. Okay. Let's see. Dee writes as a teen athlete. What are your best tips to manage on your own during a sports event or overnight sports trips. We have a lot of those this year.

 

Benny  12:49

We have but I wasn't

 

Stacey Simms  12:50

competing. I know which is why I wasn't which is why it was very easy for me

 

Benny  12:55

to let you go. I don't think it's very smart to be on your own with anything. ports, you should have at least one person with you that knows what's going on. Just you know, just in case but like, if you are alone, which is again, not smart,

 

Stacey Simms  13:08

she means on your own without your mom or dad, because you're on a trip is not going to be like the coach is going to be there. The team is going to be there. So why don't you talk a little bit about what you told the kids when

 

Benny  13:18

I first joined the team coach made us all sit down and made me tell everyone what was up. Basically all I told them was I have diabetes. It sucks. If I faint there's a thing in the in the pouch that you stick up my nose or you go to coach or the athletic trainer. Don't let me die.

 

Stacey Simms  13:39

Well and when you go on overnights you're not alone in the room, but there's not an adult anymore. Yeah. So what do you tell the kids that are with you?

 

Benny  13:48

I tell them the thing like the the nasal spray thing. So like see me if I don't wake up or if I pass out, do that and then go get coach.

 

Stacey Simms  13:57

What do they say? Are they like okay, yeah, they don't Nobody seems freaked out in there.

 

Benny  14:02

I mean, a bunch of them are scared of needles and it's fun to mess around with them but

 

Stacey Simms  14:07

and I do send you you know you have a kit, we make sure that there's lots of food and drinks and all that stuff. And you have your snacks and your your Welch's fruit snacks. That's one thing that made it easier in a way last year you weren't competing because you had your knee injury. So I wasn't too worried about the ups and downs this coming year, assuming all goes well and you wrestle again. I'm not exactly sure what I'm going to do for those first couple of overnights. Well, you said it like I was gonna ask you what to do. I'm not I'm either going to come near and stay nearby. Oh, no, dad,

 

Benny  14:43

if anyone's coming is that

 

Stacey Simms  14:44

that's a great idea your father can go. I don't think I would like I'm not gonna make you stay in the hotel room with me. You can still say with your friends, but especially with wrestling until we kind of figure out what your body's doing. I think it's really important to get a baseline and then get some protocols and figured out out from there, but I don't I don't intend to sit on You don't worry. I like this one. Kristen says, Is it true that Benny has the best mom ever?

 

Benny  15:08

No. Oh, you're off the show. No one has the best mom ever. It's literally not possible. There's like a couple billion moms. You know, Mother's Day is just passed.

 

Stacey Simms  15:20

But that was a missed opportunity, my friend.

 

Unknown Speaker  15:22

Um,

 

Benny  15:26

I mean, she's pretty good, but

 

not the best missed opportunity.

 

Stacey Simms  15:31

Best you ever had. Okay.

 

Right back to our conversation. And the next question is going to be advice. What would Benny tell his younger self? We'll get to that in just a minute. First, diabetes Connections is brought to you by Real Good Foods. And on their website. They have real reviews from real people, which makes sense because you know, this is all about real food. You feel real good about eating. And what's nice is with the record As you can see, it's not just people who eat super low carb or who eat keto. There are people who have celiac who can't eat grain. There are people who just love the way the food tastes right? There are people who talk about the airfryer, which is a great way to make so much of their food. It is delicious. We are big fans of their they can put this in the airfryer we're big fans of their new ice cream. And we really love the cauliflower crust pizzas as well, which do really well. In the airfryer find out more, just go to Diabetes connections.com and click on the Real Good Foods logo. Now back to my talk with Benny asking him your questions.

 

Mary says what advice would he tell a younger version of himself about being a teenager with diabetes? So I guess she means what would you say to yourself back

 

Benny  16:52

then? Keep doing what you're doing. You'll be fine.

 

Stacey Simms  16:56

I think that's an excellent advice.

 

Benny  16:57

Yeah, I was a pretty good child. Questions like, Oh, I wish I had depression. No, I was the best.

 

Stacey Simms  17:04

I think the only advice that you should give your younger self is, if you take your pump off to play football in the neighborhood. You might want to put it someplace smart like a mailbox, just because I lost it a couple of times worse,

 

Benny  17:17

just because I lost it a couple times. It doesn't mean you have to bring it up again. We always found it. Yeah, I'm pretty good. You're pretty good. Yeah. Your mother had to go your mother. Who is that? Oh,

 

Laura says does he have any good one liners when people ask about his tech? I'm a cyborg. You have so bad. And people believe me and it's really funny.

 

Stacey Simms  17:39

Okay, so here's an example. We'll go to someplace brand new and you make friends everywhere you go, which is

 

Benny  17:43

amazing. I'm kind of jealous of that. So we'll go to the beach where a smile. Yeah, we're just I just wear a smile, where it doesn't have to be real. Where I

 

Stacey Simms  17:52

smile. We'll go to the beach. And you will, you'll make friends but you have your shirt off your decks calm with the beginning. Put thing on, you know, either on your arm or your stomach. Do people ask about that? And they want to

 

Benny  18:04

tell him I'm a cyborg.

 

Stacey Simms  18:06

I'm so serious. And then do you kind of go into any more detail? Not if they don't ask. They just leave it at that. Most of them most of the time. They just leave it at that. That's funny. Okay, so this the next couple of questions came from a different Facebook groups. So while I know a lot of people in the podcast group, these came from a different on a group of moms with elementary school aged children, you know, saying this just as much for the listeners as I am for you. smart alec. has been he ever been bullied over having diabetes. So

 

Benny  18:36

let's talk about that. Then. No. Okay, unless I don't remember.

 

Stacey Simms  18:40

No, no. Let's talk about why you think you haven't been bullied about diabetes or picked on? I think part of that is because you were always a bigger kid. Right? So nobody was mad. No. As you listen, I've been trying to edit out that I'm saying And he keeps saying it so now we just have to leave it but but you were you were a bigger kid and you were a nice and fun kid. So nobody ever picked on you for much of anything. Right? I mean, I think the only time that we were in a quote bullying situation was when you were in like fifth grade and a little kid was so trying to pick on you. And you he was like it was like poking the bear with a stick. Luckily, you didn't you didn't take the bait. But I think one of the reasons why nobody picked on you is because nobody picked on you anyway. But also, you were so upfront about it. Yeah, that there was what are they gonna pick on you about

 

Benny  19:38

how your pancreas doesn't work? What if What a nerd

 

Unknown Speaker  19:42

but you were always there first to tell people about it and to explain and I was also like, the most popular kid in my elementary school. So

 

Benny  19:52

there's that too modest to ah, am I wrong?

 

No, I remember explaining At least there was a time where we were in the gym, and I was running around giving everybody high fives. And they were all chanting my name.

 

Stacey Simms  20:08

Well, that was I don't want to burst your bubble. There's fifth grade. Well, yeah, but it was also like a jdrf event.

 

Unknown Speaker  20:13

Oh, that was that school?

 

Stacey Simms  20:15

Oh, really? Yes. It was gonna be like one of the beam team. No, that that was

 

Benny  20:19

that was beam team at school.

 

Unknown Speaker  20:20

frayed right. I'm saying it was a purpose. Yeah, but I'm okay.

 

Stacey Simms  20:25

But that's a perfect example of how a diabetes thing made you feel great. Yes. And it's hard because I think some kids don't embrace it naturally, which I understand everybody's personality is different. I don't understand it. Well, you will when you grow up. But like, you know, your sister has a completely different personality. She's very introverted. She would not have enjoyed that. And I think she wouldn't have had the same experience you did. So as I'm talking as you're listening, I'm not talking to Betty right now as you're listening. I think it's harder for kids who are Shire, and I don't have that kind of advice so much because Benny's not that way.

 

Unknown Speaker  20:57

Some of the best. Well, you think you're the

 

Stacey Simms  20:58

best and as I said, And modest rude, but I think it's okay if your kid isn't out there saying I'm a cyborg and yeah, diabetes and get well not you never said da da da da let's rephrase, yay, beam team and jdrf and all that kind of good stuff when you were younger. I think it's okay if that doesn't happen. But I think that can also the more you keep it into yourself, the harder it can be when other people ask about it, and I think that can kind of lend itself to some difficult situations. Let's put it that way.

 

Benny  21:27

The lesson from all this tell everyone you have diabetes so you can't get bullied.

 

Stacey Simms  21:31

Well, I think it helps to be upfront about it. But you know, it's it's not my lessons. Your lessons better also be a big dude. always have a smile on your face. And I hate that you're thinking I'm talking about when you were like six or seven years I was still chunky.

 

Benny  21:47

I was cute though.

 

Stacey Simms  21:49

Hey, let's talk for a second because you're bringing it up. Let's talk about your

 

Benny  21:54

weight loss lost 50 pounds since the summer 50

 

Stacey Simms  21:56

pounds which is bananas.

 

Benny  22:00

Turn on, keep going.

 

Stacey Simms  22:01

Okay, that's fine. But can you talk about how you've done it a little bit only because as your mother, I was really worried when you start it, our dog is going crazy. I was really worried when you started because between diabetes and just body image and eating disorders and all this stuff, I was really concerned, but you seem to have done it in a really great way.

 

Benny  22:19

I'm gonna be so honest, I've absolutely no idea like how to describe what I did. I ate when I was hungry, but just enough, and then I drink a lot of water and Gatorade.

 

Stacey Simms  22:27

I can also chime in on just a little bit of what I observed. Because I was, you know, you know, I was making sure you were eating, you know, I was worried.

 

Benny  22:33

Yeah,

 

Stacey Simms  22:34

um, you seem to really just cut out empty calorie stacking. We never had a lot of junk food in the house, but you know, no crackers or you know, or things like that. And you stopped eating dessert. Not, not all the time, right. You do have dessert sometimes. But you really stopped eating when you're on the computer. Yeah. Because I think our house helped to now we didn't move until the beginning of March so you were already losing weight. The reason I bring up the new house is because In the old house, the playroom where you had your computer and stuff is right next to the kitchen. Yeah. So obviously it's really easy to snack. Yeah, but you get a lot of willpower and you stop that. But then we moved here. You have been away. The playroom is upstairs and the farthest corner of the house which is, which is great, because we have to hear you screaming. So do I know. But when you play Xbox, you're so loud and I don't really hear you until the hall has this quiet, dude, just don't scream. No, you

 

Benny  23:26

don't understand. Screaming it's part of the enjoyment.

 

Stacey Simms  23:28

But the point is, you've you've been able to have a lot of willpower. And also it's helped that you are farther away, but you eat dinner. You know, you eat breakfast, you eat food. It's really been amazing to see I would never have said you had 50 pounds to lose. So, you know, to me, you look you look really thin. Are you okay? I mean,

 

Benny  23:48

he's kilo. 15 pounds to lose.

 

Stacey Simms  23:49

Yeah, well, we're gonna talk about that off the year. With wrestling. We'll see

 

Benny  23:53

17 actually. All right.

 

Stacey Simms  23:54

The idea here is to be safe and be smart and get where you want to go without the interoceptive Okay, all right, you know, I'm right. We're gonna talk about that off the air. But, you know, the other things that comes with weight loss is you know, you're using a lot less insulin to, which has been really interesting to say, but you're doing great. Okay, and you need some new clothes.

 

Benny  24:13

Just an entire new wardrobe. I mean, we can't go shopping because of the quarantine stuff. So it's been wild.

 

Stacey Simms  24:20

I'm not taking you shopping. Okay, this is an interesting question. Elaine says, When did he start total self care, and then separately waking to CGM alarm. I don't wake up to CGM alarms.

 

Benny  24:32

Okay, I woke up to my blood sugar.

 

Stacey Simms  24:33

Oh, I was gonna say I know that. I was gonna say it wasn't true because I know you treat overnight and stuff so you feel that you wake up to your body. Yeah, I

 

Benny  24:39

never once woke up to an alarm. I'm a deep sleeper. When

 

Stacey Simms  24:45

I don't know because I'm not in your face all the time. But it seems to me that I've seen you go low and I know you treat and then you go back up. So you're waiting on wake up to alarm you're waking up because your body is alright. I've never woken up to an alarm. I will as the mom We'll let you say that I'm going to slightly disagree all

 

Benny  25:04

tell me about what happens if you wake up and you're filled up. And I'm sweaty. And I'm like this does not feel right. And then I stumble out of bed and if there's low stuff in my room, I take it and if not, I go downstairs and get juice and sit down there until my blood sugar goes back up.

 

When the dog comes, visits me, Oh, that's nice. When the dog comes as it comes visits,

 

Stacey Simms  25:25

that's nice when the dog comes to visit. I said I said, to answer the question here, too, we still use Dexcom. Share. We got the Dexcom when you were nine. We started share two years later when it came out. But we spent the first seven years of diabetes with no CGM.

 

Benny  25:41

That was scary. wasn't scary how we did it.

 

Stacey Simms  25:44

Well, you really you think that was scary?

 

Unknown Speaker  25:46

No, you don't remember it? Yeah.

 

Stacey Simms  25:48

How did we do it? We did it and it was a lot of blood sugar checks. We'll do a show on that sometime. Or at least a discussion of like the olden days, but I'll tell you what, I never really remember being scared. Well, that's not true. There was one time when you were low and you would not come up. That's when I was scared. But I knew you were low. Oh, well, it happened at home and then you threw up and you were fine. You just need to throw up and then retreated. And you were great. I don't know what that was all about. Well, you're gonna say,

 

Benny  26:15

so I had a counselor at a CCT diabetes camp. Yeah, name, Chris. And the entire week his blood sugar was just like 60 I remember that. He was not like a big dude. Like he was a tiny scrawny little dude. And he ate so much food. And his blood sugar just didn't go up.

 

Stacey Simms  26:35

Now. I remember he telling me about that. It's crazy. Maybe he needed to throw up

 

Benny  26:40

there, but it was the entire week. It's crazy. Like I had never seen a person eat so much food. And his blood sugar just didn't go up.

 

Stacey Simms  26:48

But it didn't go down. Right? It just

 

Benny  26:50

it was just 60 it was like 60 to 65 the entire week.

 

Stacey Simms  26:55

Well, the thing I was getting to with CGM is that I used to check You overnight when you were very little. And then as you got a little older, we would only check you overnight if we'd had a weird day, like we just knew something was going on, or you know you were very active. But I also went to work at 330 in the morning, so I would check you at 3am. When I got up, it was kind of easy. That was I wouldn't in my head. That wasn't an overnight check, because I was getting up to go to work. But obviously it was an overnight check. So when you got to CGM, and now that we have share, you might not wake up to the alarms, but I do so I mean, with Control IQ. And with our living situation with you upstairs here. I think I've treated one overnight low. And it was a compression though, right? You were laying on your CGM and I came upstairs and just enrolled you over and went from there. But to answer Elaine's question for real is he hasn't started total self care. No, no. Well, I don't think it's appropriate. You're 15 years old, and you're wonderful, you're independent. I could send you away for a week with anybody and you'd be fine. But in terms of real true self care, we're saving that minute do that it can you do that? A Ken Coleman right. But we're saving self care really here at home until your senior year of high school to give you a year at least maybe. Well, that isn't always talking about that's nice that he thinks that was that really threw dead under the bus. Yeah, well, that's what I do. I were thinking senior year, you're only a freshman. You're finishing your freshman year here. So we're we're still working on it. But I think senior year is good. And yeah, you do total self care when you go to camp Coleman, which is your regular month long camp.

 

Benny  28:30

The stories I could tell about the nurses. Well, some interesting ones. There's

 

Stacey Simms  28:35

a medical staff there but not a diabetes staff. So

 

Benny  28:38

there's a couple that are very good, though. Yes, that's a story for another But no, she only has to stay for two weeks.

 

Stacey Simms  28:43

We love Karen. Okay, so the best

 

Benny  28:45

she's the only Karen I like

 

Stacey Simms  28:46

no that's me. Like how can my best friend grant was a Karen weird name. All right. What were the most helpful accommodations for us school asks Heidi, I'm going to be very interested in what you say here. Repeat. What were the most helpful accommodate for you at school,

 

Benny  29:01

What was her name Miss? Oh, Miss Hyman Simon?

 

Stacey Simms  29:05

Yeah. Okay, so Miss Iman was absolutely. I guess the school called her a floater. She was a teaching assistant, who in kindergarten would come in and help you know, she was like the our elementary school always had a teacher and a teacher's assistant for kindergarten, but in first grade they did not have that. Your first grade teacher though, who was a take charge and take care of business lady. Oh, Harrigan, Miss Harrigan? Yeah, she was like, we are not fooling around with this. We need more help. So she got permission to have this time and float in and out and do and help you with your blood sugar checks. And then by the end of first grade, there was another kid by the beginning of second grade, there were four kids in elementary school and Miss Hyman was like the diabetes lady. And she would just help. That's so nice that you remember that?

 

Benny  29:51

I remember. Like I was with her all the way to like third grade.

 

Stacey Simms  29:55

Yeah, well, she left the school it was in

 

Benny  29:57

first grade to third grade.

 

Stacey Simms  29:58

Yeah. And then you Didn't you really didn't need any of the diabetic nurse? Oh, Julie, who has diabetes? Yeah, she was on the islet cell thing, right? Yes. She had an islet cell transplant. She's been on the show before. So as you listen, yeah, she told all about her islet cell transplant. And yeah, she's a really interesting story. So we'll, I'll link that up in the show notes. You can go back and listen to that past episode. Like Kumbaya,

 

Unknown Speaker  30:21

like if I Oh, yeah.

 

Benny  30:24

Um, do you have merge? conflict? The merge?

 

Stacey Simms  30:26

I don't have any marks. Yeah, one of these days I have my book. The thing that's nice about my book,

 

Benny  30:31

Lincoln bio,

 

Stacey Simms  30:33

Instagram, it's audio.

 

Um, but I would say for accommodations, we had a very, very light 504 plan. And our 504 plan revolved almost all about testing. Because in our school district, unlike many school districts, we actually had a written out diabetes management plan, and every child with diabetes whether you're on a pump or shots or whatever you would Have a de m MP diabetes medical management plan. And you had to fill that out. So that was kind of like your 504.

 

Benny  31:06

I have a question. Yes, of course, if like, let's say my 504 says I have to have my phone with me, right? Yes. And a teacher takes my phone.

 

Stacey Simms  31:13

Yes. What do you do? That's a great question. If you felt that your health is at immediate risk, I would excuse yourself and go to the administration office and call me. If you felt your test was at risk. I would take the test. And then upon completion, I would like does that teacher get in trouble? Like what happens? Oh, it depends on the school district. If it was a mistake, it depends on the parent. Okay, so let's say that happened to you. And you were like, I took the test anyway. Okay, and you got a 95 on the test. Okay. I would go into school. And I would say or call the school and I would say, Hey, I understand there's a misunderstanding. Let's talk about it. Let's talk through it. And I would escalate if she was like, if she was great and said, Oh, my God, I'm so sorry. I didn't realize that's one thing. She says. That's outrageous. You couldn't possibly then I escalate, right? We go to the next person, we go to the next person and this person, let's say you take the test, you get to 65. I would lobby for that score to be thrown out. And you could retake the test. We've never had to do that. Because everybody's good. Yeah, everybody's been very cooperative and accommodating. But I'm all for fighting for you. But I wouldn't start out with a fight. Yeah, I would start out with a Hey, what happened? and go from there. But I don't think it's fair to make you totally advocate for yourself.

 

Benny  32:29

I would hope you would. I mean, oh, yeah. No, if I knew something was wrong, I would leave the class I'd be like, ministration something's wrong.

 

Unknown Speaker  32:37

Right. me right.

 

Stacey Simms  32:38

Like if your blood sugar was high, and they wouldn't let you see the nerve. Here's a really good example. And let's not name the teacher. You used to have migraines. Oh my God, when you were growing up.

 

Unknown Speaker  32:50

Your teacher didn't believe you.

 

Benny  32:52

Even after I threw up right in front of her.

 

Stacey Simms  32:53

Well, I think that was that was the action I was gonna say. What do you think you did that made her listen a little throw up right in front of her threw up in the classroom. I'm right in front of her all over the books. Now, if you were not in the what was that fourth grade? Okay, so let's say you were a freshman in high school, you probably would have left a classroom and vomited in the bathroom and then gone to the nurse. But because you were in fourth grade, and you were probably really nervous to leave, or, you know, there's all these things going on. It's really unfortunate that had to happen. But, you know, it's good to talk about, but back to accommodations, because we have the diabetes medical management plan, which spells out how diabetes was treated, and also said things like, you know, you have to leave the classroom to the bathroom, you're not limited to water, how much water you can drink, all that kind of stuff that was laid out our school district, which is a huge one in the Charlotte area is wonderful about that. So our 504 was all about how he's going to take tests. And we started it in. I had a 504 plan, but we never really used it because of the testing situations. Don't ever use it. Well. Yes, you do. It didn't come into play until third grade finals, right into grade. So in third grade, we started kind of testing at different ways. Big to take tests, the beginning of grade tests. So we decided for For Benny, he wouldn't do anything differently except he's allowed to have his phone with him. He doesn't need his phone right now, really, because your pump has everything on it. But you still take it in, I assume you lay it on the desk at the front of the classroom, sometimes you'll keep it your pocket. Well, so

 

Benny  34:13

normal testing, like not finals and stuff. It's just in my pocket. But teachers are like, just don't cheat, but during and agree, like finals and stuff when like they like go and collect your phone. I just like, it depends on who's there. Sometimes it's just don't cheat, or sometimes I'll keep it at the front of the class. And if it buzzes, I'll tell you.

 

Stacey Simms  34:31

Yeah, I think for us, we're gonna find out this year about accommodations for the AC T and the SA T, and things like that. And that'll be an interesting thing to go through as well. If your child is diagnosed younger, this is really easy. Because you you figure it out as they get older. Right. And by the time they're in middle school, I think High School is when testing really starts counting. But I mean, it counts in middle school too. But by the time they're old enough to take these tests that really matter. Yeah, you're understanding what they need because some kids need a lot more money. than you do, your blood sugar doesn't skyrocket because of test stress. We have friends who they walk into their final exam and their blood sugar goes to 300. Really? Yeah. But I think right in terms of most important accommodation, I would say it's actually on the parents side. And that is being able to work with the school as a team, being able to go into those meetings and say, I want to be I want to work as a team. I want to see how this goes like let's work together, which sounds very Kumbaya and woowoo. But it really helps it helps me rather than going in and saying, I'm gonna fight for my kids rights. Like there are a lot of situations, unfortunately, where you do have to fight. But you know, going in without guns blazing is very dark principles.

 

Benny  35:37

Cool.

 

Stacey Simms  35:38

Well, your elementary school principal was he loved you.

 

Benny  35:41

I was his favorite. I don't know he was he didn't name favorites, but I was

 

Stacey Simms  35:44

he was fascinated with diabetes. He was really interesting. I mean, he wasn't he wasn't fascinated, in a weird way. But he just he admired the kids with type one. He really did. I was his favorite. Well.

 

Benny  35:55

He didn't say

 

Stacey Simms  35:56

he really admired what you guys were doing. It was interesting. School. Yes, your school counselor was great. He was a good guy. He and he did our 504 plans, we would meet with him to go to the fiber floors and he was he was very nice.

 

Benny  36:09

He was the guy that like if you got to go into his office, you were one of the cool kids.

 

Stacey Simms  36:15

We were very lucky to have a great Elementary School. Okay, and has been principal

 

Benny  36:19

had a lifted red Jeep. Like how much cooler does it get than that? I guess cool was an elementary school. Principal is the eye of the beholder.

 

Stacey Simms  36:29

has been he had burnout. If So when did he have it? How long did it last? And how did he deal with it?

 

Benny  36:33

Yes, yes.

 

Stacey Simms  36:34

Yes. Ever? Yes. So explain.

 

Benny  36:37

I don't want to do diabetes. Too much work.

 

Unknown Speaker  36:39

You get that often.

 

Benny  36:41

Yes. But how do you deal with it? video games?

 

Unknown Speaker  36:44

Do you just change the subject? Yeah.

 

Benny  36:46

I find that most of the time I just go Oh, well. It is what it is.

 

Stacey Simms  36:50

Well, I find it interesting cuz I wouldn't have said you've reached a lot of burnout.

 

Benny  36:53

Like I have my own opinions about that. I have been able to shoulder shrug a lot of things

 

Stacey Simms  36:59

like kind of compartmentalize. I don't know what that means, like, put it in the back of your brain and move on with your life. Yeah. So what helps you should play video games? Is that also like, just you're with your friends? Yeah. Do you ever talk to people from Camp or no? Well, you mentioned Justin and Jeffrey early on, is it? Like knowing that they're there? You'd have to call them?

 

Benny  37:18

I mean, I guess but like, I've never been the kid that's like, and life is terrible. I gotta just like, yeah, it is what it is.

 

Stacey Simms  37:27

All right, I have two examples that I want to bring up and see how you react. And we don't have to share these two examples. The first is when you were about 10. And you want them to take a pump break. Do you remember that at all? Yeah. What was going on? Like, can you share anything about that?

 

Benny  37:41

I remember talking to Michael. And like, the pens just seemed a lot easier. But then I was like, wait, there's too much math.

 

Stacey Simms  37:49

Well, your pump requested about three days, but that's when you started because

 

Benny  37:51

I was like, wait, there's too much math.

 

Stacey Simms  37:52

Yeah. And that's when you started giving yourself your own injections. Because you had only used us we don't use syringes. Remember before that, I don't

 

Benny  37:59

ya Yeah, I remember when I was like four.

 

Stacey Simms  38:04

And so to switch to an insulin pen seems really scary to you, but you did it, which was awesome. And it's helped us a lot since then there's too much math. Yeah. And there's also too many shots because you'd eat breakfast, then you'd get in the car and want an apple. You'd be like, what I do another shot. But then the other time, I wouldn't call it burnout. But we had I actually wrote about this in the in the book, you had a really bad night, you had a night where everything hurt, your inset hurt your Dexcom hurt. I think you had to do the same night. You're doing both and it was tough. You were really upset about it. And those things happen. I think it's important to acknowledge even for a happy kid like us, that was a terrible night.

 

Benny  38:40

But tomorrow morning, I was fine. The next morning, tomorrow. Ya know why?

 

Stacey Simms  38:47

But really can do mine. You don't have to share about it. But can you talk a little bit about?

 

Benny  38:51

I remember one time, like my incident didn't work like three times and then my Dexcom didn't work like twice. I gave up and I was like, I'll do it. The morning

 

Stacey Simms  39:02

that was the week that you actually met Rodney, the pan guy who we already mentioned him he was the first question dangling. I love Rodney and, and Colt Scott, the American Ninja Warrior dude. So we met them a couple nights later because we were out to dinner and you didn't talk about the night that you were so upset. But I think don't

 

Benny  39:20

remember what we talked about. I remember is Ronnie eating a lot. And I was. It was really fun.

 

Didn't barbecue there too.

 

Yeah. It was a fun night.

 

Stacey Simms  39:29

Yeah, but I think that just helps to kind of breathe the same air as other people with diabetes. Even though you've had a crummy night, it helps to be with your people because your mommy is helpful, but only to a certain extent. All right, I don't know that you can answer this question, but this is one of the last ones. Okay. How did you realize like, when did you realize you had diabetes? And how did you feel about it? You know, I can't answer that. I just I've just always had it. This mom says I keep wondering for those who are diagnosed early like my daughter with the healthiest way of thinking about it is and how I can help with that.

 

Benny  39:58

It's life. What are you going to do?

 

Stacey Simms  40:00

Well, I think a non 15 year old person answering that question a parent might say, I think that there are ways of explaining it that change, because there's different age appropriate ways of talking about it. When Ben he was teeny tiny right after he was diagnosed, my parents got him a Curious George doll, who we'd love Curious George, and he's just not better. Right. And we thought that he would do like imaginative play, right demo demonstrative play right here. I'm gonna give he did not do that with the curious church, but he did. Oh, yeah. And so Elmo got shots. Elmo had juice boxes, Mo got insets

 

Benny  40:34

mo love juice boxes,

 

Stacey Simms  40:35

right Elmo love juice boxes. And that's something that helps kids process that they have diabetes when they're very young. And as he got older, we would read stories, we would tell other people, we did a presentation for your class every year that changed as you got older. And then we started talking about age appropriate stuff. So when you're talking about like independence, what has to be done? When you're talking about driving what has to be done right Later, we'll talk about about when you're living by yourself, right? Well think about it as a parent, how much?

 

Benny  41:04

It's fine. You guys have no responsibilities,

 

Stacey Simms  41:08

I'm going to touch on driving just a little, because somebody did ask about that. You're doing really well with driving. But you

 

Benny  41:14

want to talk about what you have to do before you drive. I checked my Dexcom.

 

Stacey Simms  41:18

And right, that's it, you check your blood sugar. If you're below 80, you can't drive. That's our simple rule. And we have to make sure there's stuff in the car. And I'll be honest with you, I'm going to make sure that you have low stuff in your car for the first year or two because it's just like anything else. You have to learn. You have to get used to it, they'll be independent. So with driving that's, that's I'm terrified, but not really because of diabetes, but you're pretty good driver,

 

Benny  41:39

the best

 

Stacey Simms  41:40

and modest to I am honest,

 

Benny  41:43

like I'm really modest. All right, and then

 

Stacey Simms  41:44

do you do any diabetes goals in the next couple of years like are there certain now

 

Unknown Speaker  42:00

You're listening to diabetes connections with Stacey Sims.

 

Stacey Simms  42:05

See, Why weren't you about how we are to each other, I can't believe I said, I hate you there at the end. Oh, although I gotta say, Oh my goodness, I am going to play a little bit more at the end of the show the very end so you can understand what I was putting up with for a lot of that interview and some of the stuff that we had to take out, but I hope some of that helped you. I'm also going to link up a few of our previous interviews with Benny, I've talked to him a couple of times on the show. And it's interesting. Not only is his voice changed a lot as you can imagine, but just to hear how things have changed. I'll do that at the episode homepage. There is always a transcription. I have no idea what this transcriptions gonna look like the first time I run it through the computer. That's gonna be fun, but we'll put that there as well. And update. Interestingly, after this interview, he really did agree to stop taking the true Seba. So for the first time in almost two years, we started the trustee but in August of 2018, he is not taking long acting With his pump it because his insulin needs have gone down so much, obviously with the weight loss, but also with puberty. He loves what I talked about that, and I'll keep you posted on how that's going. I'll tell you what, so far what he's not eating. It is amazingly steady just like it has him with Control IQ. It's maybe on average, 10 to 15 points lower. So if he was running at like 110, he's now running at 85, that sort of thing, because just that little bit more control of the algorithm is really helping, at least in the short run. But for the last two days, I swear that kid has forgotten to bolus for every single meal, everything he eats. I don't know what's going on. But I'm trying not to make a big deal about it. We're just gonna move on. We're just gonna remind we're not gonna nag. I'm sure he would say something different. All right. Well, anyway, I'll keep you posted on that, but he really is doing great. And I like that he comes on and talks about diabetes, even if it may not be what I want to hear or I want you to hear something. Tell me something good in just a moment, but first Diabetes Connections is brought to you by Dexcom when Benny was very little, and in the bathtub or at the pool, I always noticed his fingertips. I mean, you know exactly what I mean, right? When you've got diabetes and you're checking and checking and checking and poking and poking, when your fingertips get wet, somebody in the community called it Franken fingers. They were just full of little pinprick holes that you could really, really see. And you know, he is 15 I don't see his hands too much. Although I did peek when he was looking at the microphone and hanging out in the studio here, studio. Well, it is a studio, it's my office. I noticed and his endo looks at them every single time we go in that they are just normal. They are not those Franken fingers anymore. I mean, we've been using Dexcom for almost six and a half years now. And with every new iteration, we've done fewer and fewer finger sticks. The G six eliminates finger sticks for calibration and diabetes treatment decisions. Just thinking about doing 10 finger sticks a day, which is what we did in the past. I mean that was pretty every day makes me so glad that the Dexcom has helped us come so far. It's An incredible tool. If your glucose alerts and readings from the G six do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions, learn more, go to Diabetes connections.com and click on the Dexcom logo.

 

And tell me something good this week, a quick book update, not my book, but some other terrific books in the diabetes community. And these are books that have been out for a while that are highly recommended. And we all pass them around to each other, but they're getting updates. And I think it's really important because Gosh, think about how much has changed just in the last couple of years. So the first one I want to tell you about is understanding diabetes. This is better known as The Pink Panther book. I still have no idea why the Pink Panther is involved in this. And it's the actual Pink Panther. I mean, they had to have gotten a trademark but if you've seen this book, you know what I'm thinking. This was the first thing I thought when they handed it to me in the hospital. Why is the Pink Panther affiliated here, but that's a mystery for another time, I suppose. Anyway, they're on the 13th edition which you Come get us a discount because the 14th edition is coming out this summer. This is put on by the children's diabetes foundation. I will link this up in the show notes so that you can order a new book, let your endo know as well, if they're interested and it does come in Spanish. It is also available in an ebook form in a Kindle, so you can get them in lots of different ways. The Pink Panther books, the mystery continues though as to why that character How do they get the trademark anyway? All right, the next book is think like a pancreas, which is a must have, in my opinion, A Practical Guide to managing diabetes with insulin. Gary doesn't need my seal of approval here he is already the number one new release in nutrition and medical health sciences on Amazon. But I think this is really important because I recommend this book all the time. And this is the newest update for it. It's a paperback and an E textbook. And as the description says the all in one comprehensive resource for the millions of people living with diabetes who use insulin. The updates here include, as you would expect new medications, new technologies, injection devices, dietary recommendations. We've had Gary on the show many times he describes himself as a human guinea pig, because he lives with type one and he tries all of these devices, but he also talks about the science behind them in ways that I think is really clear. If you've listened to my interviews with Gary, you know, I generally feel kind of like a goofball. When I talk to him, he's very calming as well. If you haven't gotten this book before, highly recommended. If you have and you're looking for the update, probably the textbook is your best bet and I will link that up in the show notes as well. And finally, and tell me something good, lots of graduations to celebrate. Of course they're not the usual graduations people got very creative with how to celebrate their kids this year, but I know a lot of you were hoping for bigger ceremonies and more tradition. I want to take a moment to highlight just one of the many valedictorians that were spotlighted in some of these Facebook groups that I saw Jeremy bright was valedictorian and thank you so much to his parents for letting me share his story. Jeremy was diagnosed with type one at age 14 and he has a scholarship to Florida Polytechnic University to study computer science this fall. And once Jeremy's parents posted about him in this Facebook group, several other people chimed in with my tea Wendy is a valedictorian as well and you know, they kind of went and listed a few other kids didn't get permission to share their names and or their stories and and that's okay, but I think it's great that so many kids are at least getting the credit that they're due for working so hard through high school I don't know about you guys but it seems sometimes that for these kids I know the workload on my daughter High School was almost worse than college maybe it's just the pressure of you know, they have to do so well and I tried to eat that off for my daughter, but man it is hard when all the high schools are telling them you know, take this class get this college credit all these tests AC t sad. Oh, all right, just a little bit of editorial on my part and we shall see Right with all the wackiness that's happening this year with some colleges not you know, counting the standardized tests, we'll see what happens going forward. But anyway, congratulations to these great kids. If you have a Tell me something good story, please let me know you can reach out Stacy at Diabetes connections.com post in the Facebook group, you know, send a carrier pigeon, whatever it takes. I would love to feature your child or you in our Tell me something good segment.

 

Before I let you go, it's worth noting that we are right at the five year anniversary of the podcast I had Episode 300. A couple weeks ago, I made a bigger deal about that. The five year milestone is something I'm sure I'll mark on social media and talk about a little bit but I'm bringing it up here because well first of all, I can't believe it's been five years. I can't believe that I'm still doing this. I didn't have a timeline in mind when I started the podcast but I don't think I thought five years later I'd still be doing it and loving it as much as I do and it would still be growing but I bring it up because If you're listening to this point in the show, then you are a true listener. And I appreciate that. And I would urge you to please join the Facebook group Diabetes Connections, the group, I'm going to be doing some polling in the next couple of weeks. I'm not sure what we're going to do with the podcast in 2021. And I know it's a little bit early to start thinking about it. But I plan for the next year. I mean, in terms of sponsors, let's be frank, I usually have all that sewn up by August or September. And I don't want to be in a situation where I decide to make some changes. And then I'm scrambling at the end of the year. So I'm going to be asking questions like you know, frequency length, what do you want to hear? I think after five years, it's time to take a tough look at this like a hard look at it and decide what do we really want to do? Where are we going with this right? And if it stays the same, fantastic. I love doing it. But if there's something that you would prefer to hear, you know, maybe it's all technology news, maybe we go once every two weeks, but we only do news updates, that sort of thing. Maybe you really like the personal stories and we stay with that we do a mix. Maybe we make up Longer show a shorter show, you know, there's lots of options. But I want to hear from you. So please watch for surveys over the next couple of weeks. But you got to be in that group. I'm not going to make these public. I don't want people who don't listen weighing in. I mean, come on. And I really can't thank you enough, five years later, to have as much fun as I'm having and to keep doing this and hearing from people who enjoy it. That's the best. Thank you as always, to my editor john Buchanan's from audio editing solutions for making sense of this week's interview and everything else that he does. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Unknown Speaker  51:41

Diabetes Connections is a production of Stacey Sims media. All rights reserved. All rounds avenged

 

Stacey Simms  52:04

You can you can take that to your room when we are done.

 

Unknown Speaker  52:09

Disgusting.

 

Unknown Speaker  52:11

No, take it with you Why? And I

 

Stacey Simms  52:13

have a place to put it or leave it over there because I'm going to throw it away. If I well why would I keep it I take that two places with me like here. Let me interview with a man with a microphone that's been inside my son's mouth. I think you would love it especially in this day and age.

 

Transcribed by https://otter.ai

Dr. Nat Strand is an anesthesiologist who lives with type 1 and a mom of two young children. She just contributed to a paper all about pain management guidelines in this difficult time, when many people can’t see their doctors to face to face. You also may know her as the winner The Amazing Race in 2010. Of course we also talk about having T1D and that crazy travel show!

Check out Stacey's new book: The World's Worst Diabetes Mom!

In Tell Me Something Good: virtual events, fire fighters and a lego master

Join the Diabetes Connections Facebook Group!

This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Sign up for our newsletter here

Have a diabetes product or something to promote to the community? Check out Stacey's new Book to Clinic program. She's looking for sponsors - this program fits just about any budget.

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Episode Transcription: 

Stacey Simms  0:00

Diabetes Connections is brought to you by One Drop created for people with diabetes by people who have diabetes by Real Good Foods real food you feel good about eating and by Dexcom take control of your diabetes and live life to the fullest with Dexcom.

 

Announcer  0:20

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:25

This week, Dr. Natalie Strand is an anesthesiologist who was diagnosed with type one as a teen. And she says people who live with chronic pain and people who live with diabetes have a lot in common.

 

Dr. Nat Strand  0:39

and we may think the person who lives with it is thinking about all day long with every activity you know before they go to bed when they wake up in the morning, but the people around them even loved ones, you know and household. kind of forget because you look healthy.

 

Stacey Simms  0:53

Dr. Strand just contributed to a paper all about pain management guidelines in this difficult time when many people Can't see their doctors face to face. You may also know her as the winner of The Amazing Race in 2010. Of course, we talked about having type one and that crazy travel Show. I'm a huge fan By the way.

In Tell me something good: virtual events, firefighters and a Lego master. This podcast is not intended as medical advice. If you have those kinds of questions, please contact your health care provider.

Welcome to another week of the show. I'm so glad to have you along. I know Stacey Simms. We aim to educate and inspire about type 1 diabetes by sharing stories of connection. And I am so excited to finally talk to Nat Strand. I can't believe that we haven't crossed paths before. I'm a huge fan of the amazing races. I mentioned I started watching it in 2001 when I was pregnant with my daughter, and I actually remember the commercials when it was like coming soon. And then of course September 11 happened and how are they going to be able to do this they thought the show might not have a second Season. So, gosh, that was such a long time ago. But it is amazing to see that even with COVID-19, which stopped the show again, they're going to be continuing that in the future.

But that's neither here nor there. I mean, we're talking to Dr. Strand about pain management her life with type one. And of course, we'll talk about the amazing race as well, but she wanted with her partner and fellow doctor in 2010. So taking a look back, I want to bring you up to date before we get to the interview about something new that I just announced really a couple of days ago on social media, and that is my book to clinic program. Of course, the book is the world's worst diabetes mom. And one of the things that I have found really fascinating is that although I am obviously a lay person who wrote an advice book for parents of kids with Type One Diabetes, I've been really fascinated by two things. One is that adults with type one are buying and reading the book and then giving it to their parents to talk about, you know, their childhood if they were diagnosed as a kid or wants to learn Learn more about the parent perspective, which I thought was fascinating. But I'm also hearing from diabetes educators and endocrinologists who have told me and I know I sound surprised here and this is genuine. I'm not trying to make this silly. They have told me that they have learned things from the book. And you know, when you think about it, it really isn't a surprise, because it's the layperson perspective. These are things you do not learn in medical school, right? These are things you learn when you mess up diabetes, when you're at the beach, you're in the car. It's the middle of the night, you're macgyvering stuff together. This is stuff you've learned when you live with type one.

And to that end, a few clinics reached out and said, Can we have copies of the book to give away and so I started a new program, it is called book to clinic. Bottom line, I'm looking for sponsors to pay for these books, so we can get them to people who need them. It's very reasonable. It's a very easy system. I will put more in the show notes and there's a video that's on social media you can see the whole thing and how it works. big thank you to my first two sponsors because the books have already gone to clinic. Thanks to T one d 3d year, and Big thanks to frio so you know I really appreciate the faith that they have shown and if you have a product or a blog or another podcast and you're looking for some very reasonable advertising that is targeted to an audience that is looking for you, please let me know and you can reach out to Stacey at Diabetes connections.com. I’m really excited about it. It's one of those things that you just don't expect to happen. But you know what, we'll see where it goes.

Diabetes Connections is brought to you by Real Good Foods, and they have already new ice cream flavors. We love their ice cream and they're kind of hard to get right now. they've they've silted up a couple of flavors. But man they are so yummy. I cannot wait to try the mocha Java chip ice cream. I'm a huge fan of coffee and chocolate and their original flavors that we tried way back when beginning of March. I think we did that Facebook Live where Benny and I tried the ice creams. They were so delicious. We really liked them in chocolate chip, everybody in my household Loved the peanut butter chocolate chip ice cream or big peanut butter people. The new flavor sound amazing. I mentioned the mocha Java chip, the cake better ice cream. My kids love that. And something called super premium almond charcoal ice cream. That sounds amazing. So let me know what you think if you've sampled the new flavors, we haven't been able to try them yet, but I'm really excited and of course Real Good Foods has real good food. They have a whole line of high protein, low carb grain free gluten free. Good for a keto diet if that's your thing. Everything from cauliflower crust pizza to stuffed chicken and breakfast sandwiches, find out more Just go to Diabetes connections.com and click on the Real Good Foods logo.

If you've already heard of my guest this week, chances are you're a big fan of The Amazing Race TV show. Dr. Nat Strand won the whole thing in 2010, part of the first all female team to cross the finish line first, along with her friend and race partner, Dr. Cat Chang. Dr. Strand is also the first winner with diabetes and she might really think We'll be the only contestant to compete with type one. I started watching The Amazing Race. As I mentioned when I was pregnant with my daughter and I have been meaning to talk to that for a long time. I'm so thrilled we finally worked it out. She's an anesthesiologist and a pain medicine specialist working at the Mayo Clinic in Scottsdale, Arizona. Recently, she contributed to a paper on caring for patients with pain. During the COVID-19 pandemic. She was diagnosed with type one at age 12. So we have a lot to talk about. Here is my interview with Dr. Nat Strand.

Dr. Strand, thank you so much for joining me. I am excited to learn from you and to hear your story. I followed you for years on social media. So thanks for coming on.

 

Dr. Nat Strand  6:42

Oh, well, thank you so much for having me. It's an absolute pleasure,

 

Stacey Simms  6:45

so much to talk about. We will get to the stories and living with diabetes and your diagnosis story. I want to start out and just jump right in with what caught my eye recently, which is a study to what you contributed about caring for Patients with pain during this pandemic. I don't know that you can really share too much about the study. But I'm curious like, you know, your anesthesiologist, let me start with asking you what are you seeing right now? What's going on in your world,

 

Dr. Nat Strand  7:14

where I'm located in Phoenix, Arizona, we are thankfully not experiencing the surge that we thought we were going to have. So four to six weeks ago, there was a lot of work as far as preparing on a community level. All the hospitals governor mandates to increase capacity of hospital beds, things of that nature. So we were certainly preparing for a surge. But I think a lot of people in our community have made personal sacrifices with the social distancing and the stay at home. And I think that that has helped us flatten the curve, as I say, not quite bend the curve because we're still increasing cases here but flattened the curves. Right now. What I do is practice pain medicine, we largely transition to telemedicine to avoid face to face visits and allow patients to access health care. While they stayed safe at home, so predominantly in the last few weeks, I have been treating my patients with telemedicine.

 

Stacey Simms  8:08

And how does that work? Because I would imagine that pain management is already a very delicate balance. You know, we hear about, Oh, you don't want to take too much of this medication or you can get addicted. And then when people are concerned about not seeing their doctor face to face, you've got to be worried about well, are they even managing their pain? Or are they suffering? Can you share a little bit about how it's been going?

 

Unknown Speaker  8:27

You know, I think for the most part, it's been excellent. With two way real time, audio and visual, I think you can get a good sense of how patients are doing. And as far as managing medications, you know, certainly the opioid crisis was there before we call the pandemic that the word crisis is still there during the COVID pandemic. So, you know, it's not the answer isn't just to prescribe a bunch of opioids. Now, some people benefit from it, but a lot of people can do manage with other texts. Consider that the anti inflammatories, neuropathic pain medications, lifestyle alterations, weight loss therapy and even with you know, the social distancing and stay at home, there's a lot of physical therapy that you can do from home too. So I think this challenge in medicine is really forcing our hand taking advantage of telemedicine and taking advantage of remote care and certainly providing access without being face to face now we are now open for elective procedures in Arizona so we are able to keep patients face to face but for a period of time there we really were forced to jump on the telemedicine bandwagon, maybe a little sooner than most of us were prepared to do that. I've been very pleased with the ability to offer access to patients, especially patients who are at higher risk, whether that be due to health concerns or age or even for patients that have to travel long distances to see a physician. So I think easing the burden on those patients and their situations to allow a little bit lower barrier to entry. healthcare access has

 

Stacey Simms  10:01

pardon my ignorance on this question, but when I think of seeing a doctor for pain management, and fortunately, I haven't had to have a lot of that in my life. So again, I'm ignorant on this. I don't think of an anesthesiologist. Right as the person that I would see I think of you all in the operating room.

 

Dr. Nat Strand  10:18

You're not alone. You know, when you do a residency in anesthesiology, you basically spend three years after your internship focusing on ICU level care, operative care, regional anesthesia, select nerve boss, epidural catheters, those kinds of things. So you become an expert at acute pain management, both with medication bandwidth intervention, so there's a fellowship option afterwards. And one of those planners either you can go into ob anesthesia, you can go into cardiac anesthesia, you can go into intensive care, you can also go into interventional pain medicine, so you kind of utilize that and there's a small skill set you developed during the anesthesia residency to further hone that Then focus on mega spinal injections, radiofrequency ablation of the spine or large joints, implantation of spinal cord stimulators or implantable pain pumps. So, you know, it doesn't seem like a natural progression at first glance, definitely. But when we kind of think about what we do in the bar and how that can translate to an office setting for chronic pain patients who kind of come to the bridge to the specialty,

 

Stacey Simms  11:27

yeah, yeah, of course, that makes sense. So tell me about this study. Because this is all about caring for patients with pain during the pandemic, not necessarily patients with COVID-19. This is something that is more of a guide for physicians,

 

Dr. Nat Strand  11:42

who's our recommendation, we worked with the American Society of we China presenting medicine to put out recommendations and then we also the paper you're referencing with that International Paper with the European society, of regional anesthesia also, and we just kind of want a different side provides some guidance during this pandemic early on, know how to handle urgent procedures, semi urgent procedures, you know, what was the risk of using steroids? You know, what can we do to manage our patients that were on chronic opioid therapy. So they really was sort of a set of guidelines after discussion of a panel of international pain medicine experts.

 

Stacey Simms  12:22

It does seem that chronic pain as I read through a little bit of the study, you know, just the introduction, things like that. It seems like chronic pain is so debilitating, especially for older people. I know we're a diabetes podcast, we're going to talk about diabetes in just a moment.

 

Unknown Speaker  12:37

But is there

 

Stacey Simms  12:38

you know, any advice that you would give someone who is suffering who feels like I don't think there's something for me? I've had this pain for so long. I'm afraid of being addicted. You know, we hear all those stories. Any reassurance?

 

Dr. Nat Strand  12:48

Absolutely. And one thing I want to say, You reminded me we talked about the food diary podcast. I think we're a lot of similarities between living with chronic pain and dealing with diabetes. I mean, they're totally different disease states. But if you talk about an invisible disease, that the person who lives with it is thinking about all day long with every activity, you know, before they go to bed when they wake up in the morning, but the people around them even loved ones, you know, a thing household, kind of forget because you look healthy or you look okay, you know, so yeah, that experience of living with diabetes is very similar to the experience of living with chronic pain.

 

Stacey Simms  13:27

That's really interesting, especially and even to my question of people are almost afraid to speak out because they're afraid they won't be taken seriously, or they'll be blamed. I didn't even think about that.

 

Dr. Nat Strand  13:38

Yeah, I mean, and, you know, you don't want to be a complainer or you want to put on a happy face. You feel like it's not interesting to other people, because it's the same thing it was yesterday and so, you know, I think living with diabetes myself, I bring a lot of that to counseling people who live with chronic pain because I get it, you know, and a lot of times they feel really, you can tell they can feel like, Oh my God, that's the first time anybody's really related to me on that way, you know more than just diagnosing the underlying cause of their pain, but actually, what it means to them to live with a condition like that. So I think that actually me having my experience of living with diabetes helps me relate to patients who live with chronic pain.

 

Stacey Simms  14:16

So let's talk about type one. Let's talk about your experiences. You were diagnosed as a young teenager, really, pre teenage 12 to remember your diagnosis story.

 

Right back in just a moment and telling your story there, but first, diabetes Connections is brought to you by One Drop, and I spoke to the people at One Drop, and I was really impressed how much they get diabetes. It really does make sense their CEO, Jeff was diagnosed with type one as an adult. In fact, I just talked to him last week about something else. It's always so good to talk to him because he gets it. He knows what this is like. Right? One Drop is for people with diabetes by people with diabetes. The people at One Drop work relentlessly. To remove all barriers between you and the care you need get 24 seven coaching support in your app and unlimited supplies delivered. No prescriptions or insurance required. Their beautiful sleek meter fits in perfectly with the rest of your life. They'll also send you test strips with a strip plan that actually makes sense for how much you actually check. One Drop diabetes care delivered, learn more, go to Diabetes connections.com and click on the One Drop logo. Now back to Nat and I had asked her if she remembered her diagnosis story.

 

Dr. Nat Strand  15:34

Do I remember that summer being really annoying and my family's road trips I remember going up to Northern Arizona and having to stop use the restroom all the time and it's a short like two hour drive. So I do remember my parents saying we'll stop drinking so much. You know of course now we know that the opposite. And then I went to like a three day sleepaway camp and at camp I was getting some notoriety for how many cans of soda I was drinking, I was going to the vending machine. And I was drinking so much that point I'd like built a pyramid of all the cans. I think, obviously I was going into either some decay or you know, just hypoglycemic diarrhea. So, I came home, my dad is a radiologist, he started to suspect that I might have diabetes. And I think he brought home some like urine ketone strips or something and tested them. And I remember it was like black. So he actually took me into the hospital. And I remember him telling me I was going to the hospital. And I had this bag of gummy bears in my room. And I vividly remember looking at those gummy bears. And you know, in a typical kid, that was what I was sad about was like, Oh, I'm not going to believe me. There's I had no idea what the rest of the diagnosis meant. But at that time, you know, you were admitted. I think I stayed in the hospital for 10 or 12 days and learned how to give myself injections and carb counts and there you have it. That was kind of my guide. It was truly not traumatic in a way. I mean, I didn't have some big bad events that veiled the diagnosis. It was kind of suspicion. Then that was the summer before I went into middle school. So I got to carry a purse everywhere. So the diabetes supplies I thought that was pretty cool.

 

Stacey Simms  17:17

Did you know you wanted to go into a medical field when you were that age?

 

Dr. Nat Strand  17:20

No, I don't think so. I had dreams of being like an oceanographer or a National Geographic photographer, kind of more creative, worldly, growing, no roots type of careers. But it wasn't until later. I think I had an interest in medicine through diabetes and my you know, you get a lot of exposure to physicians and hospitals at a young age. But it wasn't until I was in college that I really solidified my desire to go into medicine.

 

Stacey Simms  17:46

And what made you choose anesthesiology? Do you remember having a process

 

Dr. Nat Strand  17:49

for that? Well, it's certainly you know, matters a lot about what rotations you get. And if you have a great attending on a certain rotation that makes you know just kind of lights it up for you and that kind It happened to me for anesthesiology, bad reputation as a third year medical student and I just had a series of phenomenal attending physician to let me you know, place IVs Let me place lines, I intubated patients, I was in on some bigger cases. And I remember at the time, which of course you you changed your mind on this as you get older, but at the time, I wanted to be, you know, really where the emergencies happened. I wanted to be, you know, a first responder I wanted to be someone went down and had an emergency, I wanted to be there to be part of it, you know, traumatic, and now that I'm older, I kind of like No, I'd like something with Office Hours. You know, nobody needs you in the morning. But at the time, I wanted to be right in the heart of the action and there's nowhere better for that than being you know, in an operating room every single day and you get to help people. That's often the most terrifying thing they've ever done. And you have just moments for them to establish trust with you. Even if it was pediatric cases or you know, even on babies, you know, a parent literally can do their baby. And then you take it down the hallway. And so there's this intense trust that needs to develop over a very short period of time. And I always felt like that was something I really helped sacred as that amount of trust that someone had any for their loved one or for themselves.

 

Stacey Simms  19:22

We have had to have, you know, anesthesiologists, we've had surgery, both of my children over the years, and I always in the consultations, or when they come in, I always say to the anesthesiologist, you are the most important person in this room. And I try to say it when the search is not around, but I don't care. Because to me, that's the one and I, you know, it is such a huge responsibility. And I have such respect almost all and when you said, you know, you take your child down the hallway, if you've been there like I have, you know, your heart is in your throat for the entire time, and it must be such intense, not only the training, but just the experiences that you go through. Do you all Good, this is kind of a personal question, do you will have a community? Do you help each other out? Do you think there's Okay, mental health among anesthesiologists, because that's gonna be so difficult. So that's a huge weight to bear.

 

Dr. Nat Strand  20:11

It's a huge weight to bear. And I think, you know, I don't want to pretend like I'm on the frontlines right now, because again, I do outpatient pain medicine for the majority of my practice, but especially some of the anesthesiologists that have been called to intensive care units, and that are on COVID airway teams. And some of my best friends from training are in hospitals that are saturated with cases and other states. And so I think that mental health is a huge issue, the amount of stress, the amount of burnout, the amount of anxiety, the amount of fear even about you know, PBE and that kind of thing, especially in the beginning, when some of the supply chains weren't, you know, as mature again, I'm not talking about my personal experience, but people at other hospitals. So, you know, I think in general, it's an issue and I think acutely, it's even a bigger issue. I do see resources. I think people do In the pandemic are very aware, I even read a story about a physician suicide in New York for an emergency medicine physician, you know, so people are aware, and I think there are resources available now, especially that are free for physicians. But in general, I think mental health is unfortunately still kind of has a stigma where in medicine, I think self care is often last care. You know, people go to work when they're sick. For the most part, people go to work when they're tired. People work long hours overnight, you know, into the next morning, so I think mental health kind of goes along with physical health and, you know, you just kind of do what needs to be done and the needs of the patient come first. And so for a lot of physicians and all specialties, I think self care, including mental health really is a challenge.

 

Stacey Simms  21:42

I have to ask well, I have an anesthesiologist who also has type one and I mentioned you know, my kids, one has type one and one does not have both had surgeries where they required hospitalization and anesthesia. Are there any best practices or any bits of advice that you can share with the diabetes community to help us make the hospital stays, you know, we're not talking about COVID-19, obviously, but you know more routine stuff. Is there anything that we can do or better prepare, so that when we go to the hospital, if it's an adult or child with type one, that we can kind of help the healthcare teams take better care of us.

 

Dr. Nat Strand  22:16

So I think one of the things is to try to speak with your anesthesiologist ahead of time if possible. So if you're having a plan surgery, and you know who the group is going to be, you may find people within that group that have a little bit more experience and interest in managing type one, that would be number one is to really see if you can identify someone, even if there's not someone who has specialized experience just so you can come up with a plan. I would definitely suggest having a plan with your endocrinologist written out that can be given to the anesthesiologists. You know, I'm thinking of when I've had surgery or when I you know, had my C sections with my kiddos. I think that having the endocrinologist involved so they can, you know, give their support and of course, the You're going to do what they're comfortable with and what they know how to do. And sometimes that's changing, you know, insulin pump to IV insulin. And you also have to balance that with if someone's not familiar with it, and they don't have trust in it, they have to administer the care that they have trusted. So there might be some education involved. Of course, it depends on you what the case is the length of the case, the intensity of the case, those kinds of things. So I think if you're able to, if it's a short case, if the anesthesiologist is comfortable with the plan, I would love to always keep my insulin pump on and my guests come on, but I do know that sometimes, that's just not possible and you have to switch to, you know, other types of influence. So it's kind of uncomfortable for everybody. But I think if you can communicate ahead of time and create a plan that's most comfortable for everybody involved. That's important. And of course, you know, whatever is going to keep anybody safe. You know, avoiding any hypoglycemia, avoiding any severe hyperglycemia. And of course, just getting you to the other side when you can take over management yourself again.

 

Stacey Simms  23:59

Yeah, what We did the last time but he had surgery because the first the first time he had surgery, he was teeny tiny, I think had been diagnosed for, I think he was seven or eight months in. So he was about he was still two. And he had no, he had no decks. And he did have an insulin pump when this was like 13 years ago. So everybody was all excited to see the pump. It was very interesting. But he did great. And then this last time, he needed surgery, he had knee surgery late last year, and they were amazing. But we decided that it would be easier for the anesthesiologist to just look at his Dexcom numbers on his pump, not his phone, because the pump you unlock 123 right, the tandem pump is super simple. We figured the phone could lose signal, the phone could be harder to unlock, you know, just he's got like an, you know, a six digit code, and why would I remote monitor from the waiting room? What the heck was I gonna do? You know, they would know, they would know I had faith. They were great, and it really worked out well. So it was a really positive experience. And interestingly in the 1213 years that had come by that hospital Steph was really well educated about pumps and CGM, which was a really pleasant surprise for us. So that was good.

 

Dr. Nat Strand  25:06

Yeah, that's awesome.

 

Stacey Simms  25:08

All right. So I think I'm not alone in that the way many of us were introduced to you was on national television was on The Amazing Race, which is, it is the best reality show. It's my favorite of all time. I started watching it. I looked this up the other day that I couldn't believe it. I started watching it in 2001, because I was pregnant with my daughter and I couldn't sleep. And I used to watch it all the time. And I adored it.

 

Unknown Speaker  25:31

And you guys

 

Unknown Speaker  25:32

want it?

 

Stacey Simms  25:34

I know a lot has been said a lot has been written over the years about this. What was that? Like? I mean, what do you most remember about it?

 

Dr. Nat Strand  25:41

Yeah, that was 10 years ago now it's really crazy. But you know, there's there's the experience of doing amazing race of traveling around the world was nothing. I mean, you have a backpack but you know, you're going to the Arctic Circle, you know, you're going to go to sub Saharan Africa, you know, you're going to go we we didn't know exactly where we're going. Go back, watch the show myself enough time to know I'd be really cold, really hot, really dirty. But you have a backpack, you have no money, you have no maps, you have no cell phone, you have nothing. And so just being stripped down to sort of your just immediate resources to figure things out like that, because that was as interesting as it was to see the world. I mean, I had never been so stripped down of things I had access to, you know, being a study or I would have references for everything I kind of just get thrown into the world and open a clue and say, make your way to Stonehenge, you know what I mean? It's not like you get direction. So it was while that I did it with one of my very best friends, who's another anesthesiologist, Dr. Catching and we we had a blast. We went around the entire globe and I think it took us 21 days total. And then I came home and slept for like six. And after that, you know, the show starts airing in the fall and it airs. I think it aired from September to December or did at the time. So what sticking it was a whole nother like phase two.

 

Unknown Speaker  27:03

Oh yeah, with all the

 

Dr. Nat Strand  27:04

editing and the production that they do to their production, what the other teams were doing, you know, you see a lot of backstory or parallel stories that you didn't see at the time, right? Because you were just with your team, so very interesting to watch it after having lived it. And then I think phase three of it is getting to be like a C list celebrity for a year or two, which was also very weird. So there's like three phases of The Amazing Race that totally kind of changed my life. But overall, I was so positive, I have nothing but fond memories of doing it and the people that I met and, and I also remember thinking the world is a lot safer and friendlier than I would have thought, you know, if you just drop off to Bangladesh for 48 hours, with no plans, you know, people just kind of help and you and you're frenetic and you're tired and you're racing and you run up to strangers and you asked them questions really quick and, you know, now I would never go to Bangladesh for the weekend. You know what I mean? Like work to go somewhere for a weekend. But it was worth it, you know, you You definitely got to see things and get a taste of it. So afterwards I tried to tell myself, you know, even if you don't have a huge chunk of time to go somewhere still go, if you can, and, you know, to see the world and everybody was friendly, I don't think I had one time where I felt like somebody that's, you know, rude or aggressive or unwelcoming. And I think that was a very wonderful experience too. Because sometimes I think we can kind of become afraid of going places or being with other cultures and being there in person in so many different cultures. And having everybody be so warm was was phenomenal.

 

Stacey Simms  28:34

Did you learn anything at that time about managing diabetes? Because you you I mean, I know you're stripped down, but you had your diabetes supplies, but I saw the show you're testing while you're driving. I mean, you know, to some extent, you don't have all the stuff you know, you don't you're not sleeping, right, you're not eating right. And I'm just curious, I think sometimes with my son, he'll go and forget something and muddle through when he learns from that. And even though we have all this wonderful technology, he kind of has learned that he can make it work. You can always MacGyver something. I'm curious if you had that experience.

 

Dr. Nat Strand  29:03

That's the word I was just thinking. I mean, any type one becomes, you know, kind of a MacGyver where you're learning how to, if you need to draw and slip out of an old reservoir for a new wine or you're learning how to reuse parts of an infusion set because one part ripped off if you don't have enough to replace the whole thing, or you're learning how to keep insulin cold or you're learning how to package things. They don't take as much room by taking them out of their packaging and putting them in a Ziploc, you know, all together, I think, you know, I remember even the test strips, you know, opening the test strip bottles and filling one bottle with two bottles worth of strips just to save space. So, you know, you kind of by force have to get very creative with faith and efficiency and also problem solving. So yeah, I learned a lot about traveling with diabetes. And you know, one of the things I did was I typed out a letter that said I have type 1 diabetes. In case of emergency please help me get sugar or please You know, I'm getting 200,000 to a hospital and I printed that out in several languages. So, you know, if I found myself in Russia, for example, and didn't know how to say what I needed, you know, I would have that kind of to give. So I think, you know, just learning how to prepare, you know, anticipate what problems you might have, or where you're going, and then, you know, trying to bring the selections with you as possible. That was definitely a skill set that was honed,

 

Stacey Simms  30:24

that's a great point. We were in Israel A while back. And, you know, we were on a guided tour, and everyone spoke English. But at one point, a guy wanted to take my son's medical bag to examine it, and he didn't speak English and then he figured out what was going on your tour guide kind of spoke to him and he was like, Oh, you know, kind of funny exasperated, like, come on, make this simple for me. And he wrote out this is a medical bag in Hebrew, and attached it to our bag. He was like, here Now you won't have any other problems like what's wrong with you people? Why couldn't you just do that to me? He was very funny back to us, like, you know, nicely exasperated with us, but I think in the future, that's Something that is just very helpful. You know, this is a medical bagger. I have type one diabetes in different languages. That's great advice. So I mentioned you have two children. Now you have I was gonna say toddlers, but you have preschoolers, right, five and four years old. You mentioned c sections. I'm not going to get all personal about type one pregnancies and that sort of thing. But when you were diagnosed at 12, I doubt you were thinking about children at the time. But you know, as you were getting older with the diabetes diagnosis, did you think about children? Was this something that you thought might be difficult or not possible with type one, or was it always in the plan?

 

Dr. Nat Strand  31:32

You know, I actually, again, sitting with my adventurous plan for life. I wasn't one of those girls that really thought I would have kids. I never really thought about being a mom and stuff like that. I kind of was more thinking about how I was gonna travel the world. And so, I mean, we had all seen Steel Magnolias. And so I think, you know, I had this awareness but at the time, you know, I think it was more of an awareness that that movie was wrong. I think I thought it would be fine. If I had wanted Kids. And then once I got a little older, I met my husband, we got married and I started, my switch flipped and I was like, I need children. And then I was like, Okay, I started getting into the details of, you know, diabetes and what the control needed to be and what the risks really were. And, you know, that I think was overwhelming. I think, you know, type one pregnancies, it's definitely a full time job. It's not regular diabetes management is like, very, very intensive diabetes management. So I knew that people would type one could have kids, I just didn't know if I could do what it would take to be that strict for that long. You know, so I think I, I pleasantly surprised myself that I could, you know, I think when the stakes are there, you do your best. But you know, I think there are different personalities, obviously, that have type one and my brother also has type one, he was diagnosed in his 30s and he's very mathematical. He's got an engineering mind and I think Not that anybody is well suited for diabetes, but if someone was to be well suited personality wise, he is, you know, he is regimented. He charts everything. He stacks his thing. You know, he's like that, and I'm the opposite. I became like him when I was pregnant.

 

Stacey Simms  33:14

So speaking of your kids, though, you you know, you've said you've been doing mostly at home consoles for your work. I assume that for the last couple of weeks, at least you've been home with your kids, maybe more than usual. How's that going?

 

Dr. Nat Strand  33:28

Well, you know, I think that everybody will look back on this time with different different experiences. Some people are bored and they've organized every room in their house and they make all these new recipes and I will look back on this time and remember what I had a three to five year old, who didn't have anywhere to go and any preschool or any day until my house apart all day long every day. My couch cushions haven't stayed in place for more than 20 minutes of full time. I mean, it's just crazy, but it's gonna be exhausting. I mean, they're like feral animal. But it's been cool to see them develop their relationship. You know, they're they're playing together from sunup to sundown. They're imagining things. They're making no jungle. So it's been nice to see them spend some time together, but certainly be at home with two young kids and nowhere to go. That's not for the faint of heart.

 

Stacey Simms  34:26

I salute you. Before I let you go. I know as you've said, you you're not in the ICU right now you're, you know, you're not seeing patients with COVID-19. But as a person with type one, I assume you're trying to stay on top of the medical literature and, you know, seeing what this may mean for people with type one who who get it who catch it who are at risk. Can you talk a little bit just either you know, your thoughts for yourself advice for the community? I'm just curious what's going through your mind on

 

Unknown Speaker  34:52

this these days?

 

Dr. Nat Strand  34:54

Well, you know, when they when it first kind of came out, I was reading a lot about what had happened in China. And also in Italy. And when I thought it was I kind of assumed it was type two diabetes, you know, because we were seeing a lot of age related and comorbidities. But you know, we've now seen with position statements from like the a DA and the jdrf, you know that they're not really differentiating type one and type two. So, you know, I know for me that my risk of catching this is not hired because of the diabetes, but my risk of a more negative outcome definitely is higher because I live with diabetes. So, you know, the way I look at that is I'm doing all you know, the recommended social distancing, masking thing at home, those kinds of things. And at the same time, I'm using this as an opportunity to really focus on all other aspects of wellness. You know, I'm kind of re engaging to bring my diabetes control into a tighter range because I know that's helpful. Now, as far as like rest, nutrition, exercise, all of those things are sort of, you know, you can think of it as like prehab instead of rehab, you know, what you can do before you deal with something to make you as resilient as possible. Physically. So I would just say, we know our risk of getting it's not higher, but our risk of complications if we get it is higher. And that's something that I think we should not let us talk on a topic from a place of fear, but rather from a place of preparation, and using that knowledge to just, you know, get our diabetes under the best control possible. Whether that means, you know, changing to a pump, or getting a CGM, or just re engaging with your endocrinologist or CDE. And then I think making sure you consider all other aspects of wellness to this to make you more resilient, which is, you know, nutrition, rest, stress management and exercise. So, I think we can use this knowledge to just put ourselves in the best position possible. A great defensive is really the best offense in this case.

 

Stacey Simms  36:42

Well, thank you so much for talking to me for sharing your story. And for just giving us a little bit of an insight into the medical community these days. I really appreciate it.

 

Dr. Nat Strand  36:53

Oh, and thank you so much for having me. I mean, like you said, I followed you on social media for so many years, and it's just an honor to be included on your project. Cast and thanks for everything that you do for our community. We all appreciate it very, very much.

 

Unknown Speaker  37:10

You're listening to diabetes connections with Stacey Simms.

 

Stacey Simms  37:16

That was so nice of her to say that at the end, it's funny, isn't it? The diabetes community, you know, we all kind of know each other from social media, or, you know, we've maybe we've met at a conference, but there's a lot of mutual admiration out there. It's always nice when people say that, but you know, as you listen, it makes me think if for some reason you feel like you're not really a part of this community, you know, maybe you listen or you're lurking in the group, and you've never reached out you're wondering if you know, what's it like, it's great. definitely reach out, definitely jump in. I mean, if you if you're fine, and you just want to listen, that's awesome. But we're doing a lot of really fun stuff in the Facebook group with zoom calls and surveys, and I'd really love to see you there and I really want you to know as you listen that your voice is really important too. So I'll link up more about Dr. Strand and her study and other information that we talked about in the show notes there's also always a transcript there at Diabetes connections.com And up next is tell me something good which is all from the Facebook group this week love it. But first diabetes Connections is brought to you by Dexcom. Now we have been using the Dexcom g six I looked this up it is two years now. We did a goofball video two years ago a little bit over Actually, it was the night that Avengers Infinity War came out and that's the night that we slept on the G six for the first time and we did a facebook live in for Benny wanted to do it but he was also really reluctant because he wasn't sure if it would hurt. So I will link up that video but I will tell you when I looked it up where to start because it's like an agonizing 10 minutes before he does it. But you know, the Dexcom g six FDA permitted for no finger six for calibration and diabetes treatment decisions. You do that to our warm up, the number just pops up. And after so many years of the previous dex comes we had to calibrate a couple of times a day you know you wouldn't get any blood sugar readings till you did so. It's amazing. We have been using the Dexcom for almost seven years now and it just keeps getting better. The G six has longer sensor were now 10 days and the new sensor applicator is really easy to use. You'll see on the video he was shocked, you know no pain. Of course we still love the alerts and alarms that we can set how we want. If your glucose alerts and readings from the G six do not match symptoms or expectations. Use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes connections.com and click on the Dexcom logo.

 

Tell me something good this week a bunch of great I'll call them little stories from our Facebook group. Last week I talked with these big athletic accomplishments, right, the Appalachian Trail marathons, but this week was a little different and I think these are worth celebrating as well. James said AP exams were easy on accommodations this time simply allowing students with type one, double the time so they could test treat etc during what was already A weird testing cycle. That is good news. Samantha says we sent out birthday cards to any kid among our friends that had a birthday this month since they can't have a party. And that was really fun. Her husband and her son are training for the new virtual jdrf ride. And they all just signed up for the Disney run again in January. She also wrote we are all alive. I see you, Samantha, that sense of humor. And speaking of the ride, Elizabeth wrote in that the reimagine jdrf my ride is good news. And she'd like to see me talk about the new program with one of the managers we have that in the works. I'm going to be talking about that. So the jdrf rides in person for the fall, unfortunately, were canceled, which I think was the right thing to do. But you know, there were a lot of people who really enjoy that and we're banking on it, and we're already fundraising. So jdrf my ride is a way for people to participate, even though they can't travel to these locations. I will put more in the show notes on this, but I will also be doing hopefully, a whole podcast on it soon. You're off Emil Altman, who is part of the Facebook group wrote in I don't know if this is what you're looking for, but I will be hitting 39 years of pumping the second week in June, and I hit 23 years of CGM use in March, he will mark 59 years with type one in November. I had him on the show a while back. He was an early adopter of diabetes technology. In fact, he worked in the industry for a while. So really great stories from him. Perry who lives with type two and is in the group. I'm always happy to see him. He said that his dad survived heart surgery that he is needed since March and finally had the valve repair last week, which would have been early May. Perry works with the fire department in South Carolina and he says good news. My crew has not liked masks gloves or hand sanitizer. And I gotta say, this is my favorite of the week. My dear friend and Sutton who is also the Outreach Manager for our jdrf is so creative, trying to keep people connected online. And she created two events for children who you know aren't able to meet up right now because we do a lot of that in our area. So she created And this isn't just for girls. And it isn't just for boys, anybody could go to anything. She created a tea party, a virtual Tea Party, and she created a virtual Lego build. And I'm going to share the photo of one of the kids built a meter out of Legos. And it's unbelievable. It looks so good. So I'll be sharing that and I hope you check it out really good and creative stuff. Do you have a Tell me something good story it can be. I think this is a great example of what I would call you know, these smaller stories, but still big accomplishments. Good news in our community. I mean, if you running a marathon or you're celebrating 59 years with type one, we want to share that too. But I just love this segment because it gives us a glimpse into the good stuff that's happening. You can share it in the Facebook group or you can ping me Stacey at Diabetes connections.com and tell me something good.

 

Before I let you go tell you a story about something bananas that happened in my house recently and I think this might be the first chapter in my novel Next, The World’s Worst Diabetes Mombecause that book stops really right in the middle of middle school. And it's not as though we haven't continued to make mistakes. So I will tell you the punch line first in that everything is fine. Benny is fine. It's all good. But what happened was, he had had a day, just one of those Perfect Storm days where the decks calm had expired, I accidentally left his pump off. And of course, a few hours later, he was a very, very high now I since COVID-19, and we've been around each other so much. I've actually been less on him than I think I have been any time in recent memory. his bedroom in our new house is upstairs. Mine is downstairs, which is totally new for us. We have control IQ with the tanta pump, which has been a dream and he's doing really really well. But you know, things happen. So it's about six or seven o'clock at night. He realizes he's having the pump issue. Of course he didn't have the decks calm. So you know, we didn't know that there was an issue for a lot Longer than we would have otherwise, we did a blood sugar check and it just gives you that high, you know, there's no number associated with it. And, of course, we did all the protocol you're supposed to do. Huge shot, you know, gave him the correction by injection, change the pump inset slapped on the dex calm, drank a ton of water and checked for ketones. And I went downstairs because Ben he never has large ketones. I mean, in all of his years, he's had medium once I'm not would not get anything I can get. But you know, he's been high for a sustained amount of time through illness or just wackiness or you know, dumb stuff with diabetes, and he's never had large ketones, but we still do check because I just don't want to get lulled into complacency, right, people change things go I just I don't want it to slip. So he texted me and he said, Mom, the keto stick is black, which we've never seen before. So of course, I run upstairs and they look at it and it is it's super dark purple. So I'm like, Alright, well, you just had the injection because it's a urine stick. It's probably a couple hours behind. Drink a ton of water. We'll monitor From here, if in two hours, we still get a really dark, large ketone reading, we'll call the endo and he'll walk us through what to do next. Okay, so I'm freaking out, right? I'm thinking to myself, why don't I have a blood ketone meter? What's wrong with me? I'm the worst. Why don't I have so I'm online, I'm looking for blood ketone meters, you know, like, How fast can I get one and we just, you know, we, we've never had the need, so don't yell at me. Then two hours later, blood sugar is coming down nicely, he's feeling a little bit better, right? Things are gonna be fine. And I sit in his room and he goes to the bathroom and it comes out and he's like, wow, it's still really dark. And I look at the strip

 

Unknown Speaker  45:33

and I noticed it looks really weird. We use the regular old keto sticks that have little square at the end, and it just has one square.

 

Unknown Speaker  45:41

this stick

 

Unknown Speaker  45:42

has two squares, and one is dark purple, and one is light pink. I thought

 

Unknown Speaker  45:47

to myself, what

 

Stacey Simms  45:48

the heck is this? So I look at the bottle. And if you know you've already know what happened, I had purchased diagnostics. These are sticks that measure glucose and ketones and The dark purple was the glucose hidden of large ketones. He had small ketones, maybe medium, maybe. So for, you know, big sigh of relief, and that was it. But oh my gosh, I was flipping out before that. So now we know now we have to be more careful. But that's the next chapter. I've already got The World’s Worst Diabetes Momstuff ready to go? Never a dull moment. All right, a big thank you to my editor john Lucas from audio editing solutions as always, for helping make sense of a lot of my nonsense. Thank you to you so much for listening. Don't forget about the book to clinic program. If you want to jump in on that or you know, a clinic that would like to get on the list to receive books. I'd love to hear from you as well. I'm Stacey Simms. I'll see you back here next week. Until then, be kind to yourself.

 

Unknown Speaker  46:52

Diabetes Connections is a production of Stacey Simms media.

 

Unknown Speaker  46:56

All rights reserved. All wrongs avenged

 

Transcribed by https://otter.ai