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Diabetes Connections with Stacey Simms Type 1 Diabetes

The T1D news show you've been waiting for! Long-time broadcaster, blogger and diabetes mom Stacey Simms interviews prominent advocates, authors and speakers. Stacey asks hard questions of healthcare companies and tech developers and brings on "everyday' people living with type 1. Great for parents of T1D kids, adults with type 1 and anyone who loves a person with diabetes.
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Diabetes Connections with Stacey Simms Type 1 Diabetes
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Now displaying: July, 2020
Jul 30, 2020

It's our annual game show episode! This year, because of all the Zoom calls, we decided to play the HollyWood Squares! Of course, since this is a show for the Friends for Life Conference (FFL, pronounced Fiffle) we're calling it The FFL-Wood Squares!

Huge thanks to our panelists:

Kerri Sparling, Edward Hawthorne, Dr. Henry Rodriguez, Chris "The Grumpy Pumper," Moira McCarthy, Renza Scibilia, Oren Liebermann & Cherise Shockley. Learn more about them in the FFL Conference Program

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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

Click here for iPhone      Click here for Android

Transcription In The Works

Jul 28, 2020

Before hydroxychloroquine was part of the national Covid conversation, it was being looked at in studies to see if it might help in the prevention of type 1 diabetes. Recently JDRF held a Facebook Live event with Dr. Jane Buckner, where she talked about TrialNet’s Hydroxychloroquine (HCQ) Prevention Study. JDRF was kind enough to share the audio with us for this week's show.

Watch the JDRF Facebook event with Dr. Jane Buckner 

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

Join the Diabetes Connections Facebook Group!

Sign up for our newsletter here

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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 healthcare provider.

This week, we're talking about hydroxychloroquine. Yeah, that's right before it was part of the National COVID conversation is being looked at in studies to see if it might help in the prevention of type 1 diabetes.

Welcome to another week of the show. I am so glad to have you along I am your host Stacey Simms. We aim to educate and inspire about type 1 diabetes by sharing stories of connection my son was diagnosed with type one more than 30 years ago, he was a toddler at the time and now he is 15. My husband lives with type two. I don't have diabetes. I have a background in broadcasting local radio and television, we decided to get the podcast, which is now more than five years old. So if this is your first episode, thrilled to have you here, please go check out the website Diabetes connections.com. We have a very robust search we have more than 300 episodes now. So there are ways to get to it by date by keyword by subject matter. If you'd like to go back and start it episode one. You can use any podcast app as well. Wherever you listen to audio at this point, you can get this podcast.

This week's show is unusual in that it's not an interview, as I usually do. Recently, JDRF held a Facebook Live event with Dr. Jane Buckner, where she talked about TrialNet’s hydroxychloroquine prevention study JDRF was kind enough to share the audio with me. I found this so interesting like most people, I heard About the drug this year because of the whole conversation about COVID and could it treat it and that sort of thing. Many of you probably knew about it long before that in relation to lupus and arthritis and malaria, but I didn't know it was being studied at TrialNet.

So you'll hear from Dr. Buckner in just a moment but first diabetes Connections is brought to you by One Drop. It is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that it is the sleekest looking and most modern meter My family has ever used and it is not just about their modern meter setup. You can also send your readings to the mobile app automatically and review your data anytime. Instantly share blood glucose reports with your healthcare team. It also works with your Dexcom Fitbit or your Apple Watch. Not to mention their awesome test strips subscription plans, pick as many test strips as you need, and they'll deliver them to your door. One Drop diabetes care delivered, learn more go to Diabetes connections.com Click on the One Drop logo.

Dr. Jane Buckner is the president of Benaroya Research Institute at Virginia Mason in Seattle. She's also a rheumatologist who takes care of patients with rheumatoid arthritis and systemic lupus. She studies type 1 diabetes as well and is the co chair of the hydroxychloroquine study at TrialNet. Now, we've talked about TrialNet, and we've talked to TrialNet, or at least the people who work there. Many of you know that group as the people who will test your child's siblings or you or other family members for markers of type 1 diabetes, but they are tasked with the mission of finding out how to prevent type one. And so testing is just part of that. I mean, that's really where they get the ball rolling, but they have some incredible studies and I will link up more information and more episodes that we've done. We've done several with trial that I'm a big fan and I'm a big fan of anybody who takes part in their research going through those studies. Just having a family member tested. I think that's a big deal. And we should applaud everyone who does that.

Quick note, again, this is more of a speech, right? I edited out some of the stuff here to Facebook Live the pauses, stopping as she reads the questions to herself. There are some beeps, there's some audible noises I couldn't take out but it's really fine. All right, here is Dr. Buckner, just after she has introduced herself and her role at TrialNet.

 

Dr. Jane Buckner  4:25

And so we'll talk about a little bit about TrialNet first and then talk very specifically about this prevention of type 1 diabetes using hydroxychloroquine. Why did we pick this drug? How are we doing the study? And then also we'll talk about how to participate and take questions. Type 1 diabetes TrialNet is the largest international type 1 Diabetes Research Consortium comprised of over 100 locations and its mission is to prevent type 1 diabetes and stop disease progression by preserving insulin production before and after diagnosis. And so there's In a series of studies, there's a pathway to prevention. That's what we call a natural history study where we screen people who are at very high risk for developing type one diabetes, and we monitor them over time. We also do intervention trials in new onset diabetes. And we are now doing trials to prevent development of diabetes.

The other part of the work we determine that where I've been really involved over the years is what we call mechanistic studies. When we do a clinical trial, we can go back to the lab and we can look at the blood samples from patients and try to understand why a certain intervention worked are help slow the progression of diabetes or loss of insulin production, or why it didn't work. And so that's where I've been involved over the years thinking about type one diabetes and what got me interested in this clinical trial.

So why is TrialNet testing hydroxychloroquine to prevent type 1 diabetes? The first thing we need to talk about is thinking about type 1 diabetes. As a disease that progresses over time, we know people are born with a genetic risk, particularly relatives of individuals with Type One Diabetes children, or siblings of individuals with type one diabetes have a much higher risk of getting diabetes. And that's because of their genes. We know at some point along the way, in some people who have that genetic breast, their immune system gets activated, and they begin to develop immune responses that target the beta cells in the pancreas.

What we've learned over the years, with the studies done by many scientists, but including those in town, that is that there's several stages to developing diabetes. There's stage one, which is where people have to autoantibodies but their blood sugar is still normal, and their pancreas is still functioning well, they don't know that diabetes, but in fact, they are on the road to developing diabetes and it's just a matter have time, at stage two individuals have these auto antibodies, that they now are starting to have abnormal blood sugars. And finally, at stage three is when we think of the classic clinical diagnosis of diabetes where individuals require insulin.

Well, so the goal is actually, in this study, to prevent people from going from stage one, to stage two or stage three. The idea is if we treat people early at this very early stage of diabetes, where they have the immune response already targeting their islet cells that make insulin, if we could stop it from actually continuing, then we could actually keep people from getting clinical disease. So that's our goal with this study. So why did we pick hydroxychloroquine and in part of the story here is that I'm a rheumatologist and rheumatologists use hydroxychloroquine to treat many autoimmune diseases, particularly rheumatoid arthritis and systemic lupus, it's an oral therapy. It's a pill that you take once or twice a day. And it's used in these diseases and has been used Actually, it's a drug that's been available for over 60 years, initially developed to treat malaria. But in studies used by rheumatologist, it's been demonstrated to be very useful in rheumatoid arthritis and lupus. It's FDA approved to use in children and in pregnant women. And I have to tell you, it's not common a drug is considered that safe to do both of those.

we know a lot about this drug. We know a lot about how it works, but more importantly, we know about side effects with this drug. So why should we think about it? Well, there's clear efficacy in lupus and rheumatoid arthritis that we know and I'm just going to say that one of the things we also know about lupus and rheumatoid arthritis is that there are diseases where people make auto antibodies that target different parts of them. body. We know those autoantibodies happen before individuals come in to see their doctor with these diseases and they predict development of the disease. There's been small studies that have been done that suggests that taking hydroxychloroquine before someone who gets a disease, let's say they have their very high risk for the disease, they have a relative who has rheumatoid arthritis or lupus or they have some initial signs of those diseases. And these early studies suggested that they may well prevent development of the full blown disease. And actually this idea of using hydroxychloroquine early before people develop clinical disease has also now part of large clinical trials in both individuals at high risk for rheumatoid arthritis. And a study for people at high risk for lupus and the rheumatoid arthritis study is called stop ra where individuals who have auto antibodies or have relatives and are at various high risk for the disease or start on hydroxychloroquine early and they're following them to see if they develop rheumatoid arthritis or if hydroxychloroquine actually prevents the disease.

at trial that we were talking about what would be a good intervention to use to try to stop that progression from stage one to stage two and stage three, what would be safe enough for us to give children and people who were otherwise healthy, and also had made sense from an immunology point of view, and that's why we chose hydroxychloroquine. What we're doing in this trial is thinking about how type 1 diabetes starts, and that stage one where there's two or more autoantibodies, but normal blood sugar, and our goal is to stop at that point so that we can maintain a normal blood glucose and stop beta self destruction. The goal is to delay conversion to stage two and that would be having auto antibodies and abnormal glucose tolerance and to maintain that current level of beta cell function. And so the way we design this study was to actually look for individuals who are participating in the trial on that pathway to prevention, who we know have two or more auto antibodies, but still have normal glucose tolerance. So they're stage one.

And because this drug has been used in in young children, we're able to start as early as age three. But we also are including adults as well. This is a study where it is placebo control, two out of every three participant will get the study drug, and the others, one third, we'll get received the placebo. This is really important in clinical trials, because we have to know not only if the drug works, but we also need to make sure that it doesn't cause harm. And this placebo control group helps us know both of those answers.

This is a randomized trial. So a computer randomly selects who gets the study drug, and it's double blinded. That means no one knows Who is in which group until the end of the study and that includes the clinical coordinators, physicians who are participating in working with study participants. So some of the details and safety has become an issue that's much more on people's mind because of the use of hydroxychloroquine in the setting of COVID-19. And I can speak particularly to that as well. But let's first start by remembering that hydroxychloroquine has been used for over 60 years and is FDA approved for pregnant women and children. When we started considering the use of this drug. We worked within TrialNet with a group of infectious disease experts for study design, and we also monitor all the side effects throughout the study. Importantly, we know from treating particularly patients with lupus and rheumatoid arthritis, that adverse outcomes or safety issues are linked to the dose of the drug being used, the length of time that it's used other medications that a patient may be on.

So when we do this study, we screen people who are participants for potential complications at the time that we randomize them. But we continue to follow for those at the time of the study. And I can go into more detail about this. Since we've been recruiting for this study. For over a year. Now, we now have a very good sense as well, not only from historical results with our patients from the rheumatology clinics, but also from the individuals participating in this trial. And just a few things about this trial. So, participants, this is a capsule that's taken by mouth as instructed. And our goal is to have people in this study taking this drug until they progress to stage two, that's the abnormal glucose tolerance, or stage three, which is diabetes onset. So it's it's a study where the participants are in it for several years. They have an initial study, visit, followed by three months, six months, and then every six months we see the participant in the study visits last three to four hours. And of course, all of our treatments and exams are provided at no cost.

Here we have one of our study participants, Laila who's for taking her study medication, and you can check out her video online. Just a little bit about how to participate. The first step is to enter pathway to prevention, which is the TrialNet study where anyone aged two and a half to 45, who has a sibling, a child or a parent with Type One Diabetes is encouraged to participate and be screen. But we also broaden that to include not just your parents or siblings or children, but also Uncles, aunts, nieces and nephews. And we have quite a large group of participants in this and this gives us the ability to screen to see if you would be a person who has those two auto antibodies and would be qualify for this study. And to do that you can visit the trial on that site that we do home At home test kit. So this can much of this initial work can be done at home. And then we can have you in touch with people to understand if you would be a good participant for this.

So I'm going to take questions now and I will go into more depth about hydroxychloroquine safety and try to answer other questions. The first question is, do you have any intervention trials currently recruiting? And so this is actually a really interesting question because TrialNet always wants to have intervention trials ongoing. So we have a series of trials in nuance at type 1 diabetes, and then we had just opened another trial in individuals who had to auto antibodies and abnormal glucose tolerance. Some of those trials are on hold, and that is because of the covid 19 pandemic there has been concerned about using medications that may suppress the immune response. So currently We are following the patients who have already received treatments. But we are not bringing on new subjects at this time. I would say our goal is to do that once we have a better understanding about how to move forward. But really interestingly, hydroxychloroquine is not considered immunosuppressive we started that trial in the summer of 2019. And we have continued that trial throughout the pandemic because it was felt that it did not put our our subjects at increased risk. And of course, at one point, there was thought that it may be helpful. We have asked our participants to continue taking their medications as prescribed throughout this period with the COVID-19.

Yeah, so one of the questions is Could this be of any benefit to long standing diabetes patients who have no c peptide? And part of this issue is this beta cells that are stunned, so may be able to recover? That's one of those really interesting areas, and I think that the jury is out on that. Part of the reason that we decided to study hydroxychloroquine in these individuals who are in stage one is we think the role that hydroxychloroquine may play may stop the immune system, what we know is the immune system gets activated, and then it's a little bit like a steamroller, increasing and increasing in its aggressiveness against the body and against particularly the beta cell. And our hope was to stop it early before it picks up too much speed. And that's what we think hydroxychloroquine doesn't mean that it might not be helpful in this setting where we may have beta cells that are our stun and and it may become useful in individuals where once we've cooled down the auto immune response, maybe with another medication, that this may be a drug that we could use long term to maintain that kind of tolerance or quiescent stage. So I think we'll we'll have a better idea when this first trials done.

Yeah, so the next questions is have have we seen any patient with negative side effects that you've heard so much about, and I know a lot of people are nervous because of what they've heard on the news, and so I kind of wanted to relate our experience. The first thing I could say is that we have our experience with our subjects in this trial, but as a rheumatologist, I have been prescribing this drug for, I hate to say it, but almost 30 years. So I've been been taking care of patients with lupus and rheumatoid arthritis who have been taking hydroxychloroquine throughout my career, because this is a drug that's been used for a long time. And I'd also like to say those patients take the drug, many of them for 10 or 20 years. So my experiences that and our experience with our subjects in this trial is that some people do have some side effects. Most of them tend to be more like some mild gi upside, initially, maybe a side effect. We also have to watch out for the eyes in this setting. We know that long term use of this drug can impact the eyes, so participants get regular eye exams as part of the study. So if there's any problem, we capture that quickly, and we have ophthalmologists who help us with that. There's also been concerns about cardiac arrhythmias with this drug. And that's been, you know, highlighted in the setting of COVID-19. I think it's important in that setting to understand that dose matters. And in some of those clinical trials, where we saw cardiac arrhythmias in COVID-19 patients, the doses were higher than we are using. The second point is that those individuals are under are extremely ill and in fact, are having some potential cardiac problems as part of their disease. So I think that's really quite different than what we see in a pattern in our patients in this trial and what I see with my patients with rheumatic diseases, that being said, the other issue is when you give this drug with other drugs that can aggravate or bring out a potential a rasmea We have been very careful throughout this study to have a large list of medications, we track those. And if it if one of our study subjects takes a medication we think could complicate it, we may hold the drug for a while. Right? And then one of the questions is about the dose, and we do select a dose for patients based on their weight in size. And the dose that our patients, if they're a full sized adult would take would be the same as the dose that I would be giving a lupus or an RA patients, for example. The next question is, is there any promise here that if beta cells are replaced in someone who has diabetes that hydroxychloroquine could prevent those new beta cells from being killed off? It's another really great question that we think about a lot at trial that, you know, again, I think with islet cell transplant, or pancreas transplant, you're probably going to need a stronger medication to control the immune response against that transplant. So at this point, I would say it could help After that initial immune response was controlled, but probably not initially, I would suggest that we would need a stronger immune suppressant drug because it's a transplant.

I have a question about Can I tell you about why I think hydroxychloroquine will delay and prevent onset of type one. So that is one of those very interesting questions. So we've been using, as I said, hydroxychloroquine in the setting of lupus and rheumatoid arthritis for I think, 40 years in Rheumatology and myself for 30 years, and we've learned a lot about the immune system over the last 40 years. So when it was first used, really no one knew why it worked. They just knew it worked. And of course, that's the most important thing for patients. What's happened as we've gotten smarter about immunology is people have devseloped a much better understanding particular about why hydroxychloroquine work and lupus We think the auto antibodies are triggering an inflammatory response. And hydroxychloroquine actually acts within the cells to stop that triggering of the response. It's something called toll like receptor activation. So we think it, it stops some of that kind of unusual or abnormal activation of the immune system. But it also has an impact on how the immune system kind of shows that something's foreign and you should attack it. And hydroxychloroquine can actually impact the ability of presenting what we call self antigens to the immune system. And I think that's a really important part of this communication. There's a communication between B cells and T cells that I think it's really vital that it's impacting, and that's why I think it's going to be important in people who only have two auto antibodies but haven't moved further yet. One of the things we might think about doing after this trial is to even go earlier for those people who only have one auto antibody, who may not get Type One Diabetes if we could get in there even sooner, and we think that might be a good place to intervene. The question is, how long after diagnosis can be enrolled in a new onset study and each study that we do we have a particular plan to enroll for new onset. And so I think that is important to be in touch with TrialNet and find out what study would suit you if you have been very recently diagnosed. There are typically some studies that quite a few studies that enroll but we also are interested in some studies where people who've had diabetes for a while may help us understand the disease better. One of the other questions is have we thought about trying this in stage two or stage three, and we have not we have talked about where we think this drug would be most effective, and we thought stage one or even the single autoantibody high risk individuals would be where it would be be most effective. So we wanted to do that trial first. And if it's effective there, we would obviously then think about moving in into later stages. Those are all the questions I've seen. I really appreciate that you've taken the time to spend with us today. To hear a little bit about this study. I'd like to encourage anyone who has more questions or is interested in participating in any of the studies and trial mat, whether that's pathway to prevention, or one of our clinical trials to please contact TrialNet. Thank you very much, and I hope you have a great rest of your day.

 

Announcer  24:40

You're listening to Diabetes Connections with Stacey Simms.

 

Stacey Simms  24:46

More information and if you'd like to watch that as well, I will link it all up at Diabetes connections.com. But as usual, with our episodes beginning in 2020, we are providing transcripts for all of these episodes. So if you know somebody who would rather read Then listen, go ahead and check it out. And if that's maybe you, you can go back. And listen, I'm trying to add in more transcripts for previous episodes, but it is from January of 2020. On if you're looking for that, and I have a question for you, and I have a deal for you. So stick around for 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, gosh, we've been with them for a long time. So trust me when I say using the share and follow apps make a big difference. Benny, and I set parameters now but when I'm going to call him how long to wait, that kind of stuff. It helps us talk and worry about diabetes less. You know, if he's asleep over away on a trip, it gives me so much peace of mind. It also helps if I need to troubleshoot with him because 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 also help us from keeping the highs from getting too high and help us jump on Lowe's before there were a big issue. Internet connectivity is required to access separately Dexcom follow app to learn more, go to Diabetes connections.com and click on the Dexcom logo.

 

So I said I had a question and a deal. So here's the question. What do you think of episodes like this, where it's not an interview, but I'm bringing you information that has been, you know, already put in the world via a Facebook Live or somebody giving a speech or a conference presentation, whether it's virtual or in person? Do you want to hear more of that I've done this sporadically over the years. Personally, I love it because I can't catch all the stuff that's going on right now. I did not see this Facebook Live as it was live. But I wanted to make sure to catch the information. So if this is something that works for you, let me know because I'd love to reach out to more diabetes organizations that are doing things like this and see if we can give a kind of a second life to some of the stuff that they've done. We don't want it to be one and done right if it goes out there once did it work for you? Is it okay that you didn't see her She did have slides. I listened without the slides. And I didn't think it really made a big difference to me. But if it did to you, if you felt confused, let me know. I'll see if I can grab the PDFs from JDRF. I'm not quite sure how to share those in the show notes. But hey, we can try. So that's the question.

And the deal is the world's worst diabetes mom is on sale. And this is kind of a two fold thing. So it's on sale at the website at Diabetes connections.com. If you use the promo code FFL2020. That was for friends for life, the virtual conference that happened earlier this month, that promo code will save you $4 off of the cover price. Again, it's FFL2020. And Amazon has also dropped the price of the paperback as of this taping. Amazon doesn't alert you when it does this. It just it just does it and I have a feeling it's because of the special we ran in the sales were making on the website, but they dropped it as well. And if you're a Prime member, of course you get free shipping. So I sign books that come through the website. I can't see seiner personalized books that go through Amazon, but it's on sale in both places. No promo code needed on Amazon do not know how much longer it'll be for sale like that on Amazon. But the ffl 2020 promo code is only good till the end of July. So go get it. Speaking of friends for life, the next episode should be just a couple of days from now I'm working on a bonus episode of the faithful Woods squares. This was the game show that I did it friends for life, and we're putting out video form but I'm also going to put it in podcast form just to cover all the bases. So hopefully that'll be out in just a couple of days. And you can enjoy that it really was fun. I'm so glad it turned out well, what are we going to do next? I got more requests to do Hollywood Squares again or FIFA with squares. I usually do a take off of NPR is a Wait, wait, don't tell me as we don't poke me. But I'm kind of thinking about doing some kind of Family Feud?

Stacey Simms  28:53

All right. Let me know what you think. Thanks, as always to my editor John Bukenas of audio editing solutions. Thank you so much. much for listening. I'm Stacey Simms. I'll see you back here for our next episode until then, be kind to yourself.

 

Benny  29:11

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

Jul 24, 2020

Diabetes camp is looking very different this summer as almost every program has shifted to a virtual experience. We talk to the people behind Clara Barton Camp, one of the oldest and well-established D-Camps in the country. Sam Stevens was diagnosed at age 5 and went to Clara Barton that very summer. She says she basically grew up there, becoming a counselor and now a volunteer helping coordinate their very first virtual experience.

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

In Tell Me Something Good, an Emmy and an incredible story of perseverance and survival around COVID 19.

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

Follow WMTW News Anchor Cristina Frank 

Read about COVID 19 survivor Kimberly Ishoy

Find out more about NRG Bites! Use promo code "SIMMS" to save 20%

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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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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.

 

Announcer  0:17

This is Diabetes Connections with Stacey Simms.

 

Stacey Simms  0:23

This week diabetes camp all right this year is really different. I'm not here to spin it like it's not. But many camps across the country are getting creative, including the people at Clara Barton, who are hosting a virtual experience

 

Sam Stevens  0:34

that there are kids who look like me sound like me act like me have my shared experiences. Even if we don't get to meet in person. I still know that they exist. I still connect with them. I still make friends.

 

Stacey Simms  0:50

That's Sam Stevens of volunteer and counselor at Clara Barton. She was diagnosed at age five and basically grew up going in Tell me something good TV me and an incredible story of perseverance and survival around COVID-19. 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 will be so glad to have you won. I'm your host, Stacey Simms. And if you are a longtime listener, you know that I'm a huge fan of camp, diabetes camp for sure. But regular summer camp, you know, any kind of programs that give kids more independence and give parents some time to themselves, which none of us are really having any experience with this, because we're all at home together. But I do love camp and I was so excited to have an opportunity to talk about what diabetes camps are doing in these really difficult times.

Both of my children started going to sleepaway camp when they were seven, eight years old Benny started at age seven for a week long diabetes camp, and they were both set at age eight to go To what I call regular camp, a non-diabetes month long program, and I've talked about that in the past a little bit more and in depth about how we did that. But I actually want to talk about my daughter for a second who doesn't live with type one, because the year she was supposed to go for the first time to regular camp, and the youngest you can be for this camp is eight years old and going into third grade, I want to say, but you have to be eight. And it's an option at that age to do a two-week program, which she was all signed up for. But this was in 2009. And if you recall, we had another big flu scare that year, that was H1N1, that was the swine flu.

I'm amazed that more people aren't talking about this now. Or maybe we did and we've just moved on because been talking about COVID for so long, but they closed down a lot of programs for H1N1back in 2009. And in our area, certainly here in North Carolina. It was a big fear. Now it passed very quickly. It was nothing like what we're experiencing now. But her camp was canceled, and it was devastating. I mean, she hadn't even been to camp. So she didn't even know what she was missing. But you know, we had signed her up. We had talked about it, you know, what was that experience and both of my kids are super independent. So she knew she was going to really enjoy camp. So as they called it, Swine 09 happened, she still has the T shirt from this camp, they sent everybody who missed camp that year, a T shirt with 09 on the back, my goodness. But it's wild for me to think that she missed her very first year of camp because of it. And Benny is missing his very last year as a camper at this camp. At this age. He's 15. He's going to be a sophomore in high school. That's your last year as a camper, then you can continue on with a special program next summer. And then after that, a counselor and training etc. But she says he's going to do which I think is great. I know there's been a lot of disappointment and events canceled. And this is just one of many, many, many things, but especially with diabetes, right camp is such a big influence on so many people. And I'm thrilled that so many camps are going to try to do it virtually, of course, it's not the same when you're talking about connection. I think it's wonderful. So we'll talk about that in a minute.

I have to tell you about something that has been sitting on my desk. Actually, it's a wrapper that's been sitting on my desk to remind me to tell you about this because we hated it a long time ago. But I've been meaning to tell you and this is gonna sound like a commercial and I guess it sort of is, but they're not paying me. But I wanted to tell you about NRG foods, it's the letters N R G. And I'll put a link in the shownotes Chris Ruden, who has been on the show before, tremendous athlete, world record holder. He has a prosthetic arm, you know, I'm talking about and if you don't, I will also link up our past shows with Chris Ruden. He was on the Titan games last year. really remarkable guy. He sent me a bunch of samples of the NRG bytes. Really, they were for Benny, I think he sent us six of different flavors, and Benny only got two because my husband and I got to them first.

They're really good. They're a smaller portion size than usual. And of course, that's how they're designed. They didn't want them to be too caloric. They're a size that's designed for, you know, a post workout replenishment. I guess we'll do a post podcast recording replenishment because I didn't work out when I eat them. But I thought they were really good. We've tried a lot of high protein bars in the last couple of years, as Benny has really been experimenting with different things that he likes. He is trying to be much more conscious, not just of carbs. He doesn't eat low carb, but of calories because he has lost some weight and he's doing really well. So the energy bytes, he said, were really good. And his review was, he does think they're too small. This is a 15 year old, but he likes that it has the protein. And he also says he understands he thinks why it's small, because you don't get that protein aftertaste. He says a lot of high protein bars that we've tried just are full of protein and you get this weird, he didn't describe it as chalky, but I would like a weird protein taste. So these are really good.

They come in three flavors, peanut butter, cran-almond and chia chocolate and I'm not a big fan of chia. So I was very skeptical, but I didn't taste it. I just tasted the chocolate and I was impressed with that. I do have a promo code for you. I'll link up the website for energy dash foods dot com and if you use the promo code Simms, that’s S I M M S, you will save 20% I told Chris I was going to be talking about it on the show, he offered the promo code. So I just wanted to get it out there and tell you what we thought. It's always really nice when you can support a business that a fellow person in the diabetes community is involved with. So thanks, Chris for sending those all the best with it. And again, all the info in the show notes.

Speaking of products owned by a person with diabetes, you know about this right Diabetes Connections is brought to you by One Drop, and it is so nice to find a diabetes product that not only does what you need, but also fits in perfectly with your life. One Drop is that the sleekest looking and most modern meter My family has ever used. And it's not just about the modern meter setup, you can send your readings to the mobile app automatically review your data anytime. Instantly share blood glucose reports with your healthcare team. It works with your Dexcom Fitbit or Apple Watch and they're awesome test strips subscription plan is amazing because many test strips as you need and they'll deliver them to your door did I mentioned the CEO lives with type one, One Drop diabetes care delivered, learn more, go to diabetes. connections calm and click on the One Drop logo.

 

My guest this week has been going to camp for as long as she can remember, Sam Stevens was diagnosed with type one at age five. She went to diabetes camp that summer and never looked back. This year, she's helping run something completely different, a virtual program for kids at Clara Barton camp and camp Jocelyn, both programs of the Barton center for diabetes education and independent nonprofit.

There are a lot of other camps with virtual programs this year, and a few that have gone ahead with their programs in person. Now, I asked about that in the Facebook group, which you should join if you're not already in it's Diabetes Connections the group. So you can find lots of information on camps there and just see what other people are doing around the country. Our diabetes camp program was cancelled this year. But Benny had decided not to go this year, which made me kind of sad he'd been going. He was seven years old. He was set for the regular camp I talked about earlier. And that was scotched as I mentioned that I am excited that the camps are going ahead to at least try to help connect campers with their community. So here's my talk with Sam Stevens.

Sam, welcome to the show. I know this is a very different kind of summer. So I appreciate you taking the time to kind of explain things. Thanks for being here. My pleasure. Thanks for having me. Before we jump into what what Barton and so many other diabetes camps are going to look like this summer. Let me just ask you a couple of quick questions about you and your experience because you have been going to diabetes camp, probably for as long as you can remember. Do you actually remember your first summer?

 

Sam Stevens  8:32

I do. I remember my first day. I remember where my bed was. I remember my trunk that I covered in stickers when I was six years old. And I remember it being the best experience of my life.

 

Stacey Simms  8:48

You were diagnosed right before you went to camp where you were just five years old when you were diagnosed, and then that was maybe the first summer that you were able to go.

 

Sam Stevens  8:54

That's exactly right.

 

Stacey Simms  8:56

Do you remember anything about your diagnosis at that tiny, tiny age? I mean, that's really young. To think back to but I'm curious.

 

Sam Stevens  9:03

Yeah, I actually, I remember being in the hospital, I remember that there was a fish tank in the hospital and the children that really liked going to. I remember being confused. And then I remember, you know, life obviously being different. But I think, I think in a way, I'm lucky that I got it earlier before I could really remember the stark difference between before having diabetes and after having diabetes. So for me, it's always just been normal life for me.

 

Stacey Simms  9:40

It does seem to me that going to diabetes camp can make it seem even more normal. I don't have diabetes, but just in my son's experience. It's so nice to be around other people going through the same thing, especially when you're a little kid. Did you know anybody at home who lived with type one, or was it just the summers for you?

 

Sam Stevens  9:57

It was just the summers. I didn't know Anyone and so exactly like you said, going to camp where everybody just gets it. Everybody just understands what you're going through when you say that you feel low or high you need to eat or can't eat is was so comforting to me and really taught me a lot I learned most of what I know about my diabetes management from camping even from my my friends and community in the years since camp

 

Stacey Simms  10:31

you I have to tell you I'm struggling a little bit with doing this interview this year because I'm such a big fan of camp and every year we talk about diabetes camp but I always in the back of my mind hope that a parent that has not yet sent their child will listen and feel really comforted and excited about camp and and really make the dive in and and as I'm talking to him thinking, but there is no camp this year. But there is kind of Camp let's let's talk let's try to look on the bright side of this because I know Gosh, so many camps. And people like yourself are working so hard to make sure there is a camp experience. Let's just start and dive right in. What is Barton doing this summer? Tell me about your virtual camp.

 

Sam Stevens  11:11

Great. So, Barton is running a virtual camp. What happened was a bunch of volunteers or alumni who you know all have been keeping intact, especially since the pandemic started, and a lot of people have sort of reconnected with friends. We all heard that camp was very, very sad, we canceled this year. And because it had such a profound impact on each of our lives, we got together and thought, hey, what can I do to help campers be able to experience that can't magic and not lose out on all of the value that they would without campus?

 

Stacey Simms  11:54

So this is pretty much a volunteer effort that that came about from from the alumni.

 

Sam Stevens  11:59

This is 100% volunteer effort sorted by alumni. And this also includes people who would have been counselors or admin staff to so multiple camp generations if you will.

 

Stacey Simms  12:15

I love it. That's fantastic. So you know, there's not going to be the campfires and the, you know, the bunks and all the stuff that happens in person. I assume it's more than a couple of zoom calls. Can you tell us a little bit about what you're planning?

 

Sam Stevens  12:29

Definitely. So we actually are going to have campfires and we are going to have cabins and of course they won't be in person. But what we've done is we've created a program where every day for a couple of hours a day, between two hours a day we have various different activities. those activities ranged from your typical, you know, arts and crafts or dance classes and stuff like that. To cabin time where we give you know every all campers have been assigned to cabins, and each of those cabins have dedicated counselor. So the counselors during their cabin times will facilitate definite games and icebreakers and pen pals and things of that nature. And then the third pillar is the all camp activity. So the campfires and the dance nights. And all of our amazing volunteers are recreating each of these programs virtually.

 

Stacey Simms  13:28

That's so great to hear. What's what is your hope for a new camper, right? Somebody who's seven years old and was just diagnosed or somebody who's 14 years old and doesn't know anybody, what would be your hope for a virtual program for somebody like that? Who doesn't know anybody.

 

Sam Stevens  13:44

So my hope for a camper who is brand new to camp is that they get that same feeling that I am not alone, that there are kids who look like me sound like me, act like me have my shared experiences Even if we don't, you know, get to meet in person, I still know that they exist, I still connect with them, I still make friends, and have that shared deep commonality of having that this profound thing in common. And I think it's a great way for people to improve their so especially if it's a younger kid or someone who just hasn't gone to camp before they can learn about it, they can experience it virtually. And then oh my gosh, this is how great it is to imagine how fun is this person and also get to experience it. And we're going to have sessions with health care providers, who will be there to answer questions and we do what's called scoop sessions, which it's an acronym for something and honestly, it's been around as a camper, and I have no idea what it stands for, but it's always

 

Stacey Simms  14:58

great.

 

Sam Stevens  14:59

I think Maybe someone older and wiser than what it stands for. But that's rare. Health Educator will talk to campers either kind of in a question and answer thing. campers can kind of submit questions anonymously that they might not be comfortable talking about with, you know, a parent or a doctor that they need some more, you know, pure conversations about it can be a nutritionist to help teach carb counting, you know, things of that nature that I think especially for new campers, it just normalizes it, right? If if you just kind of are in your own isolated life, the only real touchpoint you have with your diabetes management is most likely at your doctor's office every couple of months, right? Sometimes people are lucky enough to know other people with type one or go to school with other people. But a lot of times kids are just isolated. So this is a real exposure to the fact that kids are not alone.

 

Stacey Simms  16:00

And I wonder too, sometimes there's a misperception that diabetes camp is all scoop sessions, right? It's just all diabetes education, you're gonna con gather round kids will sit in a circle and talk about how to change an inset. Yeah, where the opposite is really, really true. I would imagine that even in those sessions, it's more, you know, it's learning in a fun environment. But every diabetes camp is a little bit different. You know, so I assume that the learning experience at Barton is kind of just melded into the camp experience. Has that been your understanding and experience over your time there?

 

Sam Stevens  16:34

That's exactly right. We, it's it's integrated really organically on a daily basis in the sense that the cabin will do check their blood sugars together and give their insulin together which is constantly an education, educational opportunity for campers, especially those who are less familiar with pre qualifying or carb counting or Doing slight changes, etc. And again, that's just integrated throughout the day. So there's just a constant learning element, as well as the more times that are set aside for doing an education session. And while of course campers are, you know, often like, I don't want to go to school for this class, whatever the the team, you know, works really hard to make it fun. So we always play you know, games like diabetes trivia, or you know, card counting bingo and stuff like that, to really try to make it can't be. Yeah.

 

Stacey Simms  17:37

So let's talk about your camp experience because you were a very young camper. And you've obviously stayed you, you know, you were very young camper. Then I imagine you're a counselor, you're a volunteer, volunteer lead of this whole thing now. Um, why did you stick around for so long?

 

Sam Stevens  17:53

The people, it's honestly the people who I've met. They're their family. To me. We always camps family theory. These are people who have mad and grown up with that I literally trust with my life. We will just always be there for each other. And that's all because of camp. I would have never met these people, I would have never learned what everybody has been able to teach me if it weren't for camp.

 

Stacey Simms  18:22

And I know this year is unique. But is there anything that you'd like parents to know, whether their child is having a virtual session with diabetes camp? I mean, you know, generally, this is the part of the interview where we try to tell parents, it's gonna be okay, drop them off for the week, go on vacation. You know, obviously, none of that is happening. But I'm wondering if you do have a message for parents in this really unique year?

 

Sam Stevens  18:45

Yeah, I mean, yeah, my message is that first of all, we are just as sad.

 

Your campers, especially the counselors who were supposed to be staff this summer. I would have been absolutely devastated. I was planning on being a counselor, which was honestly even more fun than being a camper. And I learned that it was canceled. So everybody, you know, everybody's heart is hurting just the same thing, entirely a labor of love. People who I think, you know, similarly to me share the same experience from camp and really care so deeply and truly about it that we want to take the time to give that back and make sure that kids can experience it this summer. This is our first time doing this. I think it's kind of everybody's first time doing this. So it won't be perfect. We will, you know, kind of struggle through things at the beginning. I'm sure. We're all gonna be learning as we go. So, you know, I I asked that to be patient. As you know, this is a process that we're all learning together. But I think that at the end of the day, there will only be a positive experience for kids.

 

Stacey Simms  20:00

One of the things that my son really learned or at least came home, feeling like he was more confident about at diabetes camp was just meal times. You know, he was young when he started to go. Our sleepaway camp here starts at age seven, I think at the youngest. And he came home much more interested in what are the carbs on my plate, and I'm going to add them up myself and that sort of thing. And I'm sure that virtually things like that are challenged, but are you are you going to be addressing kind of what they're eating? I picture the kids like showing stuff on the screen about

 

Sam Stevens  20:32

  1. So we won't be we won't have that level of involvement virtually, just as a nature of kids being at home and parents having different schedules with their own jobs, and you know, the volunteers having different schedules, so coordinating meal times would be really difficult. But I think that's a great idea to bring up with the counselors and maybe in a cabin, an activity could be okay. Send a send a picture of what you ate on the carb count to share it with everybody. And that could be a really good way to integrate that.

 

Stacey Simms  21:08

stump the counselors like what do you think this carb count is good? like peanut butter

 

Unknown Speaker  21:15

Good luck. Exactly.

 

Stacey Simms  21:19

That's really funny. Those are the experiences that only people with diabetes understand. Right? Those are the things you can kind of only do it diabetes camp. Um, can you tell us a little bit about some of the activities that you have planned? I mean, I'm just because I think it's hard for sometimes people to kind of understand what you see virtually, like, what can What can we do? So can you tell me a little bit about a couple of activities?

 

Sam Stevens  21:42

Yeah, definitely. So, so to start, each camper is being sent a camp supply pack, which has a couple of different activities that will set them up to be able to participate. So one example is In the arts and crafts, we're going to be building pipe cleaner ninjas. As well as doing the hand model with the, you know, just paper and colored pencils and straws and beads and pipe cleaners that are all being sent to campers right now. We're doing a game one of my favorite games, that's called Dutch auction.

 

Unknown Speaker  22:27

And the

 

Sam Stevens  22:30

this whole thing I would actually say kind of originated from Dutch auction, too. Best camp friends put together a group of alumni over Facebook, and said, Hey, does anybody want to play virtual Dutch auction next week? And there was about 20 of us who said, Yeah, let's play. And if you don't know what Dutch auction is, there's a couple ways that you can play it, but the way that we played it is that each round one person would be the judge, and the judge would come up with some sort of object. So it could be a pirate ship, or

 

something that floats are as kind of esoteric creative, things like that. And everybody gets three minutes to run around their house and create that object. And then everything comes back to the computer and presents what they made. And the judge awards, the you know, the best interpretation of that object, and then that person becomes the the judge. Nice, we had such a blast playing it. And that group of alumni you know, continue to stay connected over Facebook and it was that group that When we all heard thought camp was canceled this year, we got together and said, hey, what can I do? So we definitely wanted to make sure to include Dutch auction and virtual camp because who knows what, you know what genius will will come out of it.

 

Stacey Simms  24:18

But that's great, because it kind of all started from that idea. Right. You had you had an actual game, and then you wanted to get together and play it online. And then it came from there. I think that's fantastic.

 

Sam Stevens  24:29

Yeah. And I want to give a shout out to Melissa Moulton and Julia Roboto. Who are the the mothers of this, of this game and this group.

 

Stacey Simms  24:42

That is great. You know, hopefully, I think we're all keeping our fingers crossed that next year, things will go back to some kind of normal and we'll have you know, regular camps and kids programming and we can just focus on regular old diabetes stuff. I we don't know each other very well, Sam. But I assume that you are a confident and competent adult. You know, who is managing your own type 1 diabetes without your parents calling you every day to say did you bolus I mean, they might check on you, but they're probably not on you as much as they were when you were 567 years old, as much as

 

Sam Stevens  25:17

their wishes that he could call me every day.

 

We have we have cut that cord correct.

 

Stacey Simms  25:25

Listen, as a mom of a kid with type one, I sympathize. I get it. But not to put too fine a point on it or lead you. But it just does seem to me that diabetes camp does help so much in terms of that confidence and independence. Can you just speak a little bit to that before I let you go?

 

Sam Stevens  25:42

It absolutely does. As I've, as I've touched on. I think there's the two most important parts that have diabetes camp that really help kids with type one develop their their competence is number one. Just the the education part but also the policy of the education part. So just being you know, integrating and making diabetes management such a normal part of day to day and seeing your peers do it with you, they'll get a lot of confidence. And especially working with, with nurses and doctors and nutritionists, and having, being able for kids of all ages to have learning conversations about, Hey, I think I think I need 15 grams of carbs are going low in the afternoon, you know, let's let's work as a team to, you know, change my diesels, those kind of conversations are really great skill building experiences for kids that definitely build a lot of confidence with their diabetes management. And the second part is really the emotional support really giving people The confidence that just because you have diabetes, you are not broken, and you are not alone. There are hundreds of kids like you who all have fun. And all can be, you know, can giggle just as much as a kid without type one diabetes or go to, you know, go to dances and play sports, do arts and crafts, and do you know, all these other things that kids without diabetes do that throughout You know, every other every other month throughout the year, it's really easy to forget. And it's really easy to feel so different and so other eyes. So having that community of peers builds so much confidence on that emotional level.

 

Stacey Simms  27:44

That's great. And then on the our parting note here, there are a lot of great diabetes camps out there. I will say that my son's is the best. I love the people. It's the best in the entire country. Tell me why Barton is the best

 

Sam Stevens  27:57

to you. The people People that again I am, I'm a five year old camper who is now a 30 year old volunteer on campus and with me every single year of my life, it has that much of an impact. My, my, my friends have have grown up with me. Throughout all of those years, I'm sure that each diabetes can provide a lot of those really strong friendships, but I just can't imagine any place more special any people more special than Barton.

 

Stacey Simms  28:38

Well, that's fantastic. I'm so glad you came on. Good luck with the virtual camp. I'm thrilled that you did it. I know. It's gonna mean a lot to the families. So thank you so much, Sam, for coming on.

 

Sam Stevens  28:48

Thank you so much for having me and I will keep you posted with how everything goes.

 

Unknown Speaker  28:58

You're listening to Diabetes Connections. With Stacey Simms.

 

Stacey Simms  29:03

More information about the Barton program, there are different tracks or at least different sessions I should say. So you may still be able to sign up, I will put the information out there. And again, for other camps, please head over to the Facebook group. And you can check out the listing that is community sourced. So if you have some information you can add to that. I really hope these camps go well. I'd love to hear more if your child has participated in one if you're a staffer at one, and let us know you know how they go, is it something you'd continue even after in person stuff can happen again, I think there's going to be some cool programming coming out of this.

Tell me something good in just a moment. But first diabetes Connections is brought to you by Dexcom. And when you have a toddler diagnosed with type one, you hear rumblings for a long time about the teen years, but when it hit us at full force a little early. I'm so glad we had Dexcom Benny's insulin needs started going way up around age 11. As I said, He is 15 years old, he is 5’11 at least and that means he's grown like eight inches since he was 11. I mean with all the hormone swings, I can't imagine managing diabetes during this crazy time without the Dexcom continuous glucose monitoring system. We can react more quickly to highs and lows, see trends and adjust insulin doses with advice from our endocrinologist. I know using the Dexcom g six has helped improve Benny's agency and overall health. 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, just go to Diabetes Connections comm and click on the Dexcom logo.

 

Alright, tell me something good this week. Christina Frank is a news anchor up in Maine. She does the morning news. Boy I did this for a long time. I don't know how early they get up for television. When I did radio I was out of my house by 330. I had to be there at four to go on at five. So I'm guessing if their show starts at five, they've got to be there earlier because they don't have to just go over everything they're writing and reading but they got all the hair and makeup Well, I gladly gave up. I did do mornings in Syracuse so long time ago. But Okay, back to Christina. So she is in our telling me something good segment because Christina Frank won an Emmy! Her team won an Emmy for best morning newscast in New England. So congratulations to you, Christina. That is just tremendous. Of course, Christina lives with type one. She has a little girl we talked about her baby on the show. She's been on the show. She's just wonderful. So I'm thrilled to just offer my congratulations to what I know is a really, really wonderful accomplishment.

Another Tell me something good comes from health line. Now health line is a fabulous news source. I think diabetes, mine is under the Healthline umbrella, but they're an online magazine, whatever you call it, a news source very carefully vetted health information. And this story just was amazing. So this is a woman from Salt Lake City, Utah, who has type one diabetes, multiple sclerosis asthma and is obese and she just survived. COVID-19 like in the house. hospital ICU saying goodbye to her family and made it through. And more McCarthy, who's a good friend of mine, as you know, did an amazing write up for health line. But this is about Kimberly Ishoy. And Kimberly, as I said, has all of those underlying medical conditions. So how do they think she made it through what happened here? Kimberly says, it was a combination of advocating for herself, but also being willing to do whatever the doctors asked her to do. And she and the doctors agree that her very active lifestyle made the difference. She's a distance cycler and she does triathlons. And yeah, she has all of those conditions that I mentioned, including being obese.

So how does she do all of that? Well, I think it's all of this misconception that if you're heavy, you can't also be healthy or you can't exercise but Kimberly has been doing the JDRF ride to cure diabetes since 2013. And once she knew she could do that, she says she moved on to five K's and triathlons. It says in the article she usually finishes last. But she finishes. And this is a wonderful quote from Kimberly. I personally think we are all created differently like flowers. She says, I will never be a violet or baby's breath. I am a sunflower a substantial woman. But I also know fat women can ride their bikes 100 miles. So that's something. It's a great article, I will link it up. I thought it was incredibly inspiring. It goes through in detail what happens when you're in the ICU with COVID it's a really terrific write up that way. And I'm thrilled of course that Kimberly is doing well and on the road to recovery.

Do you have a Tell me something good story, it can be as simple as a diverse serie something fun with your kids. And this time that we're going through, I think we need all the good news we can get. So let me know and just email me Stacey at Diabetes Connections calm or you can post in the Facebook group but tell me something good.

Usually at this time of year, I am getting ready to go to friends for Life, the big conference that happens every year, mid July down in Orlando, sometimes right after the Fourth of July, this year, it is a virtual conference. And we are prepping for that getting ready. Lots of fun things that are going to be online for you to participate in to watch and enjoy from the comfort of your home. I mean, the good news here is that nobody has to travel to Orlando where it's 500 degrees in July. But of course, we're really missing seeing everybody and I think it's going to be pretty bittersweet to do this conference where you know, two to 3000 people get together every summer, but they've done an incredible job of moving it online. I'm really proud and happy to be a supporter. So you will be hearing more on that.

Please follow along on social media. I am on Facebook and Twitter and Instagram and on Instagram. It's just Stacey Simms. other platforms have to but I on Instagram, I was late to the party and I don't think there's any reason to have to, and I'm not on tik tok, and I'm not on snapfish So, you know, famous last words maybe by the end of this, stay at home will be on every platform you can find Imagine. Thank you to my editor john Buchanan's from audio editing solutions. thank you as always for listening. I'm Stacey Simms. I'll see you back here next week until then, be kind to yourself.

 

Benny  35:15

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

 

 

Jul 24, 2020

Meet two people with diabetes making a difference in very different ways. We're talking to dietitian and strength coach Ben Tzeell & teen author Morgan Panzirer.  First, if you've sort of fallen off the nutrition and exercise wagon in the last few months, you’re not alone. But getting back in the game doesn’t mean going to extremes. Ben has advice about starting small and making changes that stick. Morgan was diagnosed with T1D at age 6. She's now 19 and just wrote a book about her life – so far – with diabetes. It's called Actually I Can.

Ben's Blood Sugar Boss program

Megan's Book (Amazon)

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.

 

This week, I talked to two people with type one making a difference in very different ways. First, if you've sort of fallen off the nutrition exercise wagon in the last few months, you're not alone. But getting back in the game doesn't mean going to extremes.

 

Ben Tzeel  0:37

Life is too short to not enjoy food like that. And the last thing you want is you're constantly eating air quotes healthy, and now you're feeling deprived when you see all your friends eating these other things.

 

Stacey Simms  0:47

That's dietician and strength coach Ben Tzeel. He's got more advice about starting small and making changes that stick in Tell me something good. I'm talking to Morgan Panzirer diagnosed at age six. She's now 19 and just wrote a book about her life so far with diabetes.

 

Morgan Panzirer  1:05

And I vividly remember being in the car driving to New York City The following day, and saying to my parents, everything will be fine as long as I don't need a shot.

 

Stacey Simms  1:15

The book is called, actually I can, and after talking to Morgan, I can tell you better believe she can.

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. Welcome if you're brand new, we aim to educate and inspire about type 1 diabetes by sharing stories of connection. My son was diagnosed right before he turned two. He is now 15 and a half. My husband lives with type two diabetes. I don't have diabetes. I have a background in broadcasting. And that is how you get the podcast.

I have been so busy the last week mostly because for whatever reason, sometimes podcast interviews seem to come in clumps. So I had a lot of interviews to do and a lot of production I take care of a lot of it before I send it over to my editor who I've mentioned before, but also I've been busy with my Friends for Life presentation, Friends for Life is the biggest family conference all about diabetes in the US, possibly the world. And instead of having an in person conference this year, like everybody else, they're having a virtual conference. And so I decided, and boy, I thought this was a good idea that I would do my usual game show I usually do a game show presentation as one of my talks for them. But I would do Hollywood Squares because boy zoom just lends itself to Hollywood Squares, doesn't it? That's what I at least what I think of and I gotta tell you, I'm thrilled with how it came out. But I also got to tell you, I'm not sure I'll ever do it again.

We had to get eight people I was the ninth you need like a tic tac toe board right for for the Hollywood Squares. The FFL-Wood squares excuse me, that's Friends for Life, FFL. So FFL-Wood squares and I decided to go big and I got people from all over the world, different time zones. Day here night here. Early morning here, it was amazing. So huge credit to my cast of characters. Thank you to the contestants. I cannot wait to share it with you. The conference itself is mid month. If you've signed up for that you'll see it then. And then we'll drop it as a video in a podcast episode. Shortly after that. That's one of the really fun things that I get to do, right. I mean, you have an idea you get to try it. You see if it's a disaster, you see if it's fun, but you know, it's it's never boring, that's for sure.

Okay, interviews coming up in just a moment with Ben Tzeel and Morgan Panzirer, but first Diabetes Connections is brought to you by One Drop. 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, compact, and 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 in 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.

Unusual show this week and that I have two guests two separate interviews. And if you're here only for one or the other, that is fine. I can tell you that Morgan's interview starts about 22 minutes from now, so you won't hurt my feelings if you skip ahead. But I really think you'll like my first guest, Ben Tzeel. we first talked to him last year. He's a dietician, he's a strength coach. And Ben says eating and living with diabetes should not be boring or feel like punishment. We had a fun conversation about what that really means good intentions about eating well, and exercising and quarantine and more. Here's my talk with Ben Tzeel.

Hey, Ben, it's good to talk to you again. Thanks for coming on.

 

Ben Tzeel  4:53

I'm just so thankful to be here. And it's so awesome. It's just amazing. Thank you.

 

Stacey Simms  4:58

You're really well. We'll see about But

 

Ben Tzeel  5:02

it's human. It's human interaction right now we don't have much of that these days do it.

 

Stacey Simms  5:06

Well, let's start talking about that. I mean, how have you been living since the stay at home orders? What's your life been like?

 

Ben Tzeel  5:13

I just don't go anywhere. I've been living in Florida, not nothing against Florida, but I feel like the cases go down and then the cases go up. And that's just what you hear about everywhere. And I just figure it's just not something I'd rather really want to deal with if that makes any sense. Do you live alone? I actually live with my girlfriend and fortunately for me, she's willing to do a lot of the grocery shopping and a lot of the day to day stuff at the pharmacy but honestly, we just don't go anywhere because she works in the ICU as a pharmacist and she sees all this stuff firsthand. Wow.

 

Stacey Simms  5:44

That's gonna be interesting job to have right now.

 

Unknown Speaker  5:47

Oh, yes.

 

Stacey Simms  5:49

Assuming that you've been doing this since mid March, yo, how's your health? How are you keeping up because you're pretty intense person when it comes to fitness?

 

Ben Tzeel  5:58

Yeah, I definitely like to thanks. So it's something where I've had to get creative. I've had to step outside of my comfort zone and really look at what I have and say, Okay, what can I do with what I currently have? And slowly, you can assemble a little mini gym at home and things like that. But I've really, really taken time and effort to focus on what can I do instead of, well, this is out of my control, I guess my fitness is gonna go away. I guess all of my other habits that I've worked so hard to develop are gonna just fall by the wayside?

 

Stacey Simms  6:26

Well, I think for some of us, those things, the second part, those things have happened, right? Because it is hard to maintain a routine It is hard to, you know, especially when, and I'm gonna get personal here for people like me, you know, you're a strength and conditioning coach, you know, this is what you do. I'm a suburban mom who walks her dog and goes to the gym a couple of days a week. And it's been really easy for me to fall out of those good habits over the last couple of months. You know, do you have any advice? If people are listening and thinking, Well, I haven't kept up so it's too late now.

 

Ben Tzeel  6:56

Well, it's first one of those things is to your point where you mentioned It's too late. Now, it's never too late to actually start and say, I'm gonna look back and say, This is what I did before, this is what I was doing. And maybe I won't be at that same point right now, because I have let myself fall off because I have fallen out of this routine. But what is something I can do today that small to just build a little bit of momentum. And as you build that you take another baby step, another baby step, and suddenly, you're taking strides to get back to where you were. So if you start from that mindset, and that point, just make that tiny little shift, you end up in a situation where suddenly three, four weeks from now, you're thinking, wow, I'm already almost back to where I was. Because your muscle does have a memory, it is going to remember where you were. And as long as you put in those same habits you previously had, you should be totally fine.

 

Stacey Simms  7:45

It's funny when you talk about, you know, getting back into routine because I think at the beginning of this, I don't know if this happened to you, me and my daughter, and I think a lot of people and my daughter came home from college, and we said All right, we're going to do yoga on YouTube. We're going to walk the dog like five miles every day, and we're gonna get really, you know, in great shape, we have a stationary bike, and we're going to do all these bikes and all these rides and, and we really haven't done much of it at all after those first couple of weeks, and I've seen some really funny parody videos on that and a lot of people who have felt this way, but I want to flip that around and say you have taken as you said, You've gotten creative in your house, can you tell us a little bit of some of the things you've done to make your your home gym, I'm assuming that you didn't run out and buy a whole bunch of, you know, gym radio equipment?

 

Ben Tzeel  8:29

No, I was fortunate that I my parents don't live too far away. And I had a bunch of dumbbells and a bunch of things from my youth that I was able to pick up. But beyond that, I mean, I was pretty much in the same situation that everybody else was where I had a few resistance bands and a few dumbbells and a few little things and had to start realizing. All right, well, I want to keep my insulin sensitivity good. I want to stay on this track of that I've been working so hard to be on what can I do. And so maybe that requires you sitting down and saying Alright, I'm going to restructure my workouts, I'm going to tell myself maybe I was doing four days a week before an upper body and lower body, you can still do that. But you may have to adapt. Instead of using a cable, you may have to use a band instead of using like a barbell or instead of using a heavier weight, you might have to go more reps at a lighter weight, or incorporate pauses or incorporate other bodyweight movements that can be just as challenging. And honestly, the first few weeks of the quarantine, stay at home, whatever you want to call it. I actually felt like I was more sore than when I was in the gym because I had to push harder.

 

Stacey Simms  9:34

You've mentioned your blood sugar several times you've lived with type one you were diagnosed when you were a kid. I've heard two schools of thought here over the last couple of months. One is you know, my blood sugar's are all over the place. I'm stressed out I'm so worried and you know, things are crazy. And then the other side of the coin is my blood sugar's have never been steadier. You know, I'm not going anywhere. I'm not eating restaurant food, where do you fall in on that?

 

Ben Tzeel  9:56

I would probably fall. That's it. I mean, I'll Honestly, it's a good question because I see it a lot from the first perspective. So I feel like I then kind of translate that to me. But it's actually my numbers have been in better control since this all began. Because there haven't been as many extraneous factors. I'm not going places. There's lots of unknown variables introduced. But I just I feel for a lot of the people that are in the first situation because there is that lack of routine and that lack of structure. And while everybody says, Oh, I, I wish I could be home more, I wish I didn't go to my job. Taking that structure out of the picture can really make it difficult to stick to that exercise program really stick to the food and the nutrition that's been making you feel good with good blood sugars, and you ultimately fall off that path. And when you do your blood sugar's kind of take over everything else. And during a time where there are no sports, there's not lots of distractions, there's no big gatherings, there's no concerts, your blood sugar's can literally become the one thing that you hone in on and focus on way too hard.

 

Stacey Simms  10:55

That's funny because I thought you were gonna say there at the end that you can really you can focus on And really make a great difference. But you said you focus on and you know, it can it can not be a great thing. Can you expand on that last thought?

 

Ben Tzeel  11:08

Sure. And I mean, of course, I can tell you it, there's ways to get around it. But a lot of people what will happen is, I mean, think about it like because there aren't tons of social things to be doing. And there's not tons of activities and tons of distractions, you start to look at the few distractions you have in your life. And one of them would be, I wouldn't call diabetes, a distraction, but it's one of the big prominent parts of your life if you have it. And it just starts to become a bigger and bigger and bigger thing that you just the more you focus on it, the more it expands and the bigger role it can take in your life. So I've watched a lot of people people I've worked with people I've interacted with on social media, that they end up in a situation where their blood sugar's just take over their entire existence where they're looking at their decks calm every five minutes, wondering what's going to happen and sometimes that leads to great results, but other times, it just drives people crazy. He drives up their stress level and they get into this loop of frustration. Oh, my blood sugar's high. Oh, I'm a failure and they go down the spiral that is very counterproductive in terms of living like a really as free of a life as possible to do right now.

 

Stacey Simms  12:14

Yeah, I would also echo that for parents as you were listening. I think it's super easy. And I found myself doing this too, with Benny home a lot more. It's easy to focus on our kids blood sugar's more, right? They're not going anywhere. They're not go to the movies, they're not hanging out with friends. And it's easier to make that a bigger focus than it needs to be. So I'm kind of listening to this and taking it to heart. But you know, one of the things you're really known for in social media is these these crazy foods, right? We talked about this last time when you were on, you know, giant donut, big meals and stuff. And I'm curious if there's, you know, we often figure especially newly diagnosed, we often find out that we love restaurant food because it's full of hidden fats and sugars and you know, salt and butter and all those delicious things that We love and that's what makes restaurant food so good. But it's kind of hard to bolus for that stuff. Are you finding it easier? I mean anything on that in terms of home cooking, which I'm so sick of Ben, I am so tired of cooking. And my husband helps if he cooks too, so I'm just sick of it.

 

Ben Tzeel  13:13

Well, I can't blame you for being sick of home cooking because it gets to a point where I'm probably three months or so from having had something from the outside. And it's I'm just craving something

 

Stacey Simms  13:26

brought in a meal. You haven't brought anything in.

 

Ben Tzeel  13:28

I just maybe I'm paranoid, but I just I just would rather be like, you know what, at least I know, I'm dealing with the prep and I'm dealing with everything else. And when this starts to settle down, then I'll start to venture out and have all of the fun food again. Not that I haven't had fun. Trust me. You can make many fun things at your house. I know what you're making.

 

Stacey Simms  13:45

Yeah, no, I have friends who haven't brought any food in. I mean, we're not in that camp, obviously. But I know a few people who've done that

 

Ben Tzeel  13:51

Emilio wants me to really bad so we're working on it. We're in a negotiation right now. But to your point, I would say when you know All of the factors within what you're eating. So of course, you know that you've prepped it, you know, what you've put into it, you know, everything and everything. And there's no variables, there's no question marks. And we're not talking about the COVID part, but just about the actual composition of the food itself, then it's a lot easier to bolus for because you have all the answers. You have all the math right there when someone else creates something, even if it's something that, you know, Oh, I know, this is a bacon double cheeseburger, and I know I've had them before. And this is what happens. There's some sort of variability because that part of it is out of your control. And that lack of control can be difficult to account for granted. There's ways to take it in to consideration and be able to say, all right, this is what I'm going to do based on experience based on other knowledge, like put numbers and experience together and make a very educated decision and dose and do amazing with it. But just that little factor of there's other stuff in here there is that hidden fat you were describing. There's sometimes things are cooked in, in oils we don't know about there's sugar that might got thrown in there that you don't know. And then you end up eating some foods like that and you get frustrated you you have chicken alfredo and your blood sugar goes up to 320 for the next seven hours, no matter what you do no matter what you dose and you're just full of frustration the whole time.

 

Stacey Simms  15:14

So you work with a lot of people with type one and your background is nutrition. You have a master's degree, you're registered dietitian. I'm curious what the first change you urge people to make when they come to I know not everybody's the same. But you know, one of the questions maybe that you ask,

 

Ben Tzeel  15:30

I guess, coming from me, the first things I want to know is where people are starting out right now. Like, what are you eating? and kind of just getting you aware of what are you eating because as evidenced during this time, and this time, please put a magnifying glass on it more than anything else. But people kind of just go through the motions. They don't pay as much attention to, oh, I'm eating X, Y and Z. They just say oh, I'm gonna make whatever I can grab and I'm just gonna go for it and eat and then continue and a lot of people can't tell you what they ate for lunch yesterday. So my first goal is get them really aware, what are you eating? Start to kind of get a sense of it and then get them understanding. Are you making the meals complete? Are you getting your proteins, your fiber, your veggies? Are you getting them to the point where you're getting the nutrients that you need for both the body composition that you want, but also for the blood sugar control, because once you have the blood sugars and control, the body comes a lot faster, whether you want to lose weight or get strong. And once the blood sugars are controlled, you can do all the things in life that you really want to be doing.

 

Stacey Simms  16:30

I'm always worried about talking about diets, right? Because people want to lose weight, they go on a diet, people try all sorts of different things. We've talked about this in the past to me low carb, high carb, whatever it is, what do you find works overall, in general, for the people that you work with.

 

Ben Tzeel  16:45

For the people that I work with. I've had people on 400 grams of carbs, I've had people on 40 grams of carbs. The most important factors that I've noticed are getting enough protein into your life and I know a lot of people are concerned Oh protein is going to Your kidneys. But all the research, if you dig into it has shown that a higher protein diet is actually advantageous to the kidneys. I'm not saying you need to eat like five chickens a day, but at the same time, a substantial amount of protein. I would also say making sure you do get the fiber. That's why I tried to hit on those big three the protein, the fiber than the veggies, the fiber is going to be important whether you get that from veggies and fruit or whether you do get that from some grains. Some people do well on a decent amount of carbs. Again, it's that carb side of it is preference and everyone in diabetes is so fixated on it, when I can't stress enough where people that I've worked with are super successful on all levels of carbs, but having the protein, having the fiber, having enough of the veggies, those three things and then the other thing would be the 9010 rule. And that would be something where I would I don't know if it's actually a rule I may have made it up but it's 90% of the time you're eating on point you know what you're doing, you're making quality choices and that other 10% of the time you're enjoying the sunset You're enjoying the desserts, you're enjoying the finer things that life has to offer. Because life is too short to not enjoy food like that. And the last thing you want is you're constantly eating air quotes healthy. And now you're feeling deprived when you see all your friends eating these other things. And as long as you have a strategy on how to dose for it, so your blood sugar is going to be ultimately good. There's no reason to deprive yourself of having that and so many people are living limited in that scope of I can't have that because I have diabetes, that food scares me. This is awful. Like, I wish I could have that and you can have that. But allowing yourself that wiggle room of 10% that is usually enough to say hey, I'm gonna get the results I'm putting into a effort 90% of the time to get the blood sugar's get the body but then the other time I can enjoy everything.

 

Unknown Speaker  18:50

What's your big favorite 10% fool?

 

Ben Tzeel  18:53

That's Oh, that's a loaded question. I was gonna say there's a restaurant here called dance and dance. And Tampa has these loaded nachos that are so good. They're like a once every six month kind of thing, but they've got like the cheese and the pulled pork, and they've got the beans and they've got the ground beef and honestly, it's actually not a terrible meal in general but there's just so it's so calorie dense. That would be one cookie dough for sure would be one. The edible cookie dough not like cookie dough. That's raw eggs. And then Honestly, I have to say this but have you had cookie butter before? I have not had cookie pokey buttered so I love cookie. What is it cookie butter? It's I don't even know how to describe it. There's like this. I know the first time I had it was from Trader Joe's and then they have some everywhere apparently I didn't know it was a big thing. But it's literally like the butter form of cookie. It's like imagine peanut butter consistency but it tastes like a cookie and it's basically straight fat and straight sugar. But it's so good. Oh my God. That is my guilty pleasure. I will not lie. That's It's so good. That Great,

 

Stacey Simms  20:00

okay, he's got some advice. We've You know, we've gotten some insight into how you operate. I know you have a new program that you're working on, tell us what this is all about. How can people take part?

 

Ben Tzeel  20:11

Absolutely. So I have a program called blood sugar boss, because everybody wants to be a blood sugar boss, you want to be in control of your blood sugars and in control of your life, getting the body that you want, and literally living life without any kind of limits. And so the premise is, you're going through and restaurants become no big deal. You can walk into a restaurant by the end of this and point out what you want on the menu and say I want that and know how you're gonna dose for what your game plan is going to be. No questions asked, like the on the exercise side of things with respect to blood sugars going low constantly, that part's eliminated. You know, you go and exercise no matter what you're doing. We're eliminating the lows. we're eliminating the highest you can truly do what you want to do without having any concerns and actually focus on The exercise instead of Oh my god, what is my blood sugar going to do? Then of course talking about the food side of things to make sure that you know what choices need to go into that 90% what choices need to go to that 10% and when you do go in that 10% How to dose so you're not concerned? Oh, man, I'm going to be 300 for the next six hours. I know exactly what to do for that. I mean, we're going into travel when travels the thing again, you know, we're making sure that you go on a trip, you're like, Okay, instead of vacation being stressful, this is no big deal. We're hitting everything on all different kinds of angles. And by the end of it, you can walk away from it saying, I am in control, no situation will faze me and this is literally everything I need to know about diabetes, and I forgot one of the other big things were kick starting your metabolism up. So you're going to be able to be prepared to get stronger and lose weight. At the same time. I'm curious you you share a lot as I mentioned on inside on social media, and the other day, I saw you share a post where you were over 300 for a while, you know, you had I think it was at a Ben canula or something like that. Are you concerned that when you share something like that, right? Do you get feedback from people saying, how could you that's so dangerous? Or, you know, how could you let that happen? I'm curious what kind of feedback you get when you are that transparent, because, you know, we all know that's gonna happen, right? And I think if there's a lot of people out there that go on social media, and they act a certain type of way, and they say, Well, my blood sugar's are great all the time. And my numbers are always the decks combined, it's flat, and everything's awesome. And that's cool. You can share that. But that's just sharing the highlight reel of life. People are almost afraid to show the authentic side of the side of them that shows I'm human that I get that annulus to these things do happen. And so I feel like by showing that, it's like, Look, I'm not perfect, I've never been perfect, and there are people out there who I'm sure have had that situation happened to them. And if anything, I think it makes you more relatable. And it's okay to put yourself out and say, Hey, this does happen to everybody. Oh, my goodness, you can eat the same thing at the same time every single day and get a slightly different result. So, in that situation, it's part of life. Everybody goes through it.

 

Stacey Simms  23:15

Before I really let you go, I had to laugh when you said blood sugar boss. Because when Benny was was little, I mean, he was diagnosed before he was two. So we had to use all these, like really kid friendly ways of talking to him about diabetes. And I remember when he was about four or five years old, we started talking to him about like, being the boss of diabetes, you know, and little kids like to boss stuff around. Little kids have no control over anything, right? Everybody tells them what to do and where to sit and when to wake up, or when to go to bed and what to eat. So they have no choices, and sort of get to be the boss of something was really cool for him. And then the flip side of that was I had to say to him, Look, if you were if you're not the boss of diabetes, it's going to become the boss of you. And it really worked for a long time to help us teach him and but it's so funny. I forgot all about that. Until you mentioned The name of your program. So thanks for bringing that memory back up. It wasn't something that I had remembered. But it's so important because if you don't take control over it, you mean, you have no choice, it will take control of you.

 

Ben Tzeel  24:11

Absolutely. And that's, that's the whole goal here is like you said, you have to be the one that's saying, I am going to actively take control over this because otherwise your life is run by diabetes, whether you allow it because you allow it to you don't take back the power from it, and you don't say, this is my life, this is what I want to do. And if you don't actively make that decision, it's gonna make it for you. And you don't want someone else or something else. In this case, diabetes making that decision for you want to live life on your terms. So you need to make sure that you are a blood sugar boss.

 

Stacey Simms  24:43

I love it. Well, thank you so much for joining me. Thanks for sharing the program all the best with it.

 

Ben Tzeel  24:47

Oh, thank you so much. I'm just glad to be able to help more people in our community and I'm just thankful for the opportunity to chat with you as always, that's always an awesome time on here.

 

Unknown Speaker  25:01

You're listening to diabetes connections

 

Unknown Speaker  25:03

with Stacey Simms

 

Stacey Simms  25:06

more information about Ben's program blood sugar boss in the show notes and I'll link up his Instagram account as well now I'm gonna have to go back and look now because I do get a kick out of the bonkers food that he posts like these big portions and you know wild desserts and things once in a while, but I'm thinking now he said that they had been eating at home and creating their own stuff since the stay at home order. And now I really want to take a look and see what they've been making because we've been cooking a ton I think just like everybody, right? But I haven't been baking or making desserts. My daughter I have an 18 year old daughter and she likes to bake and she's been making cookies and brownies and stuff like that, but I'm not getting creative when it comes to desserts. I like to eat desserts, but I'm not making at this point. I am barely making dinner. I am so sick of Okay. All right. Well, you know good problems to have, I suppose.

The author of the book actually I can is our Tell me something good this week, but first Diabetes Connections is brought to you by Dexcom. And we've been using the Dexcom G6 since it came out two years ago now, and it's amazing. The G6 is now FDA permitted for no finger sticks for calibration and diabetes treatment decisions. You do that to our warmup and the number just pops up. I know it sounds funny if you're newer to Dexcom but we've been using it for seven years now. And when you're used to calibrating you know, and not getting that number automatically, it really does. It just seems so different. The G6 has longer sensor we're now 10 days and the new sensor applicator is so easy to use, but he does it all himself. Of course we love the alerts and alarms and we can set them however we want. If your glucose alerts and readings from the G6 do not match symptoms or expectations, use a blood glucose meter to make diabetes treatment decisions. To learn more, go to Diabetes, Connections comm and click on the Dexcom logo.

 

Morgan Panzirer is our Tell me something good this week she was diagnosed With type one when she was six years old, that's obviously not the good part. She is now 19, a college student who would like to become a pediatric endocrinologist. Now her sister also lives with type one. Morgan started writing the book that we're going to talk about here in middle school. It's called actually I can, Morgan was great to talk to you. She was very patient with my questions and my ignorance about equestrian sports. Here's my interview with Morgan Panzirer. Morgan, thank you so much for spending a few minutes with me. I'm really excited to hear the stories behind the book. Thanks for coming on.

 

Unknown Speaker  27:32

Yeah, of course. I'm so happy to be here.

 

Unknown Speaker  27:34

What gave you the idea to write this book?

 

Unknown Speaker  27:37

I started writing it in seventh grade for two main reasons. The first was I was fed up with all the misconceptions that people with type 1 diabetes hear every day, for example, Oh, you got diabetes, because you ate too much sugar things along those lines. So I decided that maybe if I could tell my story, I would be able to kind of change the way the general public views this disease. The second reason I wrote it was because I really wanted to empower others living with Type One Diabetes and show them. That doesn't have to be something that holds you back. Rather, you can use it as an opportunity to do whatever you want to do. So

 

Unknown Speaker  28:14

you started writing in middle school, but you were diagnosed at age six, much younger than that. Do you remember your day? Your diagnosis story?

 

Morgan Panzirer  28:21

Yes, I'll never forget. It is so clear in my mind. I had been drinking and peeing a lot. So my mom knew the signs of Type One Diabetes because she was a nutritionist. Yeah, so my mom knew the sign. So she decided to ask my pediatrician to test me just to humor her. She was sure it was nothing but she said, just test it anyway. So she did and a couple days later, my pediatrician called us I'll never forget exactly where we were in the car. And she said to my mom, I'm so sorry to tell you this, but Morgan does have type one diabetes, and my mom just immediately started crying. We were all shocked. We went to the Naomi berry Diabetes Center at Columbia the following day. And from there, it was just, let's get through this.

 

Stacey Simms  29:07

So your mother was a little bit familiar with it, but in being a nutritionist, but I can't imagine you knew at all who you're in for, and especially at age six,

 

Morgan Panzirer  29:15

no, I had no idea. And I vividly remember being in the car driving to New York City The following day, and saying to my parents, everything will be fine. As long as I don't need a shot. Little did I know, every day of my life, I was gonna have multiple needles among the finger sticks and other things. So my parents didn't really know how to explain it to me, and it was definitely a rude awakening for the next few days to come. When you started writing, did you share it with anybody else? Was it just for you at the time? Yes, it was just for me at the time. No one. I didn't really tell anyone about it. No one really knew that I was doing it at all. I was very private about it. But as the years went on, I eventually decided to tell my parents and they were like, you are What? So it was kind of fun. It was. It was a long process. But yeah, the beginning it was definitely just a very personal thing for me. And then your younger sister was diagnosed as well. What was that? Like? How old was she? How old were you at the time. So she was 13 when she was diagnosed, she's now 16. So I was 16 when she was diagnosed, and that just broke my heart because I had had diabetes at that point for 10 years. So I totally knew what it was like, and it made me think I would not wish it on anyone, especially someone in my own family. So to see her kind of struggle with it, and because she was diagnosed a lot older, I think it was hard for her to kind of get through it because she knew and remembered and understood what life was like prior. And now the fact that you have to make put so much thought into eating an apple, I think really kind of threw her for a loop, but I was really happy that I was there and could kind of show her the ropes and show her that this doesn't have to be the end It won't stop her. She doesn't want it too.

 

Stacey Simms  31:02

It sounds like you have a really good relationship with your sister. But you know, it's gotta be hard to you know your sister. So I don't want to make it like it was a perfect relationship, but due to diabetes in some way for you closer, I mean, I kind of hate that because it's a cliche, but you to share it and experience that nobody else in your family could really understand in the way you were going through it.

 

Morgan Panzirer  31:21

Yeah, it did. I would definitely say that it brought us closer. I mean, we always had a great relationship growing up. I mean, she was the only other girl in the house besides my mom. So we did everything together anyway. And we did have a really good relationship. But this definitely was something that I could share with her and I couldn't really relate to something like that with anyone else. So I think we, I mean, we don't talk about it a ton, but it is something that if I'm having a terrible day, I'm like, Oh, this stays the worst. And she's like, Yeah, I know what you mean. So I think in that way, it definitely makes it easier for sure.

 

Unknown Speaker  31:57

Okay, so you grew up in a household where After your diagnosis, your parents jumped in with both feet for advocacy. And they jumped in in a way that is unique because your dad is a trustee of the Helmsley trust, which is a as you listen, if you're not familiar, just an unbelievable funder of so much Diabetes Research and so many diabetes advocacy causes and effect. We had your dad on the show last year, but he is a very passionate person, as you know, Morgan, where he was really talking about the need for better education when people get great diabetes devices. And you know, trying to help in that respect. What was it like to know that what happened to you affected what your parents did with their lives? I mean, there's put so much time and energy into this cause,

 

Morgan Panzirer  32:39

oh my gosh, yeah, it was unbelievable. I mean, my dad became a trustee shortly after my diagnosis. So again, at six years old, I had no idea what that meant. But as I grew up and saw the impact he's having on this community and everyone with this disease, I'm so grateful that he went this way because I really do believe that he's making enormous differences in this community. I've already seen tons of new technologies that have come out, in part, thanks to his funding. So I'm so grateful. And my mom actually has she's a big runner. So she's run numerous half marathons and marathons with jdrf to raise money. So the fact that they're just all in for me and my sister is, there's no words to describe it. It's unbelievable. You've been able to do a lot of things yourself. You were a children's Congress with jdrf. That was in 2009. So how old were you when you did children's Congress? I was eight when I when was that something that was meaningful to you? Yeah, it was a really monumental event, I think because it really marked the beginning of my advocacy. And especially being that little I didn't really understand that I could make a difference prior to this. But when I got there and saw oh my gosh, all these kids are going through the same thing I'm going through and look at this difference we're making on a national level, I think it really showed me that I did have the ability to make a change if I wanted to, and if I set my mind to it. So it was definitely a big step for me and understanding that I had the ability to make a big change for everyone with this disease. And it definitely marks the beginning of my advocacy, as I mentioned prior.

 

Unknown Speaker  34:19

So tell me about advocacy for an eight year old. I know because I just people listening are kind of thinking like, well, what else? You know, there's children's Congress vote what really can an eight year old do?

 

Morgan Panzirer  34:27

It was crazy because we're at Children's Congress. We're talking to our senators. I didn't even know what a senator was. I was like, Who are you? Like, you seem really important, but I don't know what you do. Um, but it was really just a place for me to learn and understand and it opened a bunch of doors for not necessarily when I was eight years old still, but when I was older, it really just allowed me to understand, okay, I can do this and I can make a change and talk to these super important scary people. If I want to so I wouldn't say necessarily started my advocacy at eight years old, but it definitely opened that door and set that path or the years coming up.

 

Stacey Simms  35:10

So in the book, actually, I can you mentioned, you know, sugar and misconceptions.

 

Morgan Panzirer  35:15

Are there actually, as I say, actually, are there questions that that really have followed you that you would answer? Actually, I can. Oh, there's so many. It's funny, you should say that. Because one of the chapters towards the end of the book actually has a bunch of things that I've heard people say prior about this. And my answer to each of them is actually I can so that's really funny. You should bring that up. So yeah, it's all surrounding kind of the sugar aspect. And that always drove me crazy. Like, oh, you Sorry, you can't have this ice pop. It's not sugar free. And to that, I would say, Actually, I can. So it's really funny that you should bring that up.

 

Stacey Simms  35:53

Well, I mean, it's something that I think many people with diabetes experience over and over again to the point where you have to decide Are you going to be annoyed and be sarcastic? Or say nothing? Or am I going to be annoyed and continue to educate? Right and that second one, even just as a parent of a child with type one, I try to choose the second one as often as I can, but it really does wear on you. So when I saw the name of your book, I was like, totally can relate.

 

Morgan Panzirer  36:19

Yeah.

 

Unknown Speaker  36:20

And you ride correct. That's your sport is, is I'm gonna say it incorrectly as horseback riding.

 

Morgan Panzirer  36:26

Yes, that is my sport. How do I say that? What's the real sport? equestrian sports? Thank you,

 

Unknown Speaker  36:33

bro.

 

Unknown Speaker  36:35

I've not talked to somebody with type one who is you know, involved in equestrian sports. Can you tell us a little bit about how you go about doing that? I mean, because obviously, there's got to be equipment, requirements of the sport and concerns about a pump and a CGM. So

 

Morgan Panzirer  36:50

what do you do? Absolutely. So I started writing actually right after my diagnosis, and at the beginning, it was fairly easy to manage my blood sugar's Because I was young and just doing beginner things, but as I got older and obviously I started wearing a CGM a little later I got a little more difficult because I was riding for longer I was doing more difficult things. So it became a game of trial and error to kind of find the balance of Okay, I need to cut back my Bazell this this much time prior to getting on and then afterwards, I should sip on a Gatorade. So it was a big game of trial and error that definitely got frustrating at times. But then the whole other battle was at horse shows because when you horse show, you're not allowed to have a phone or any sort of electronic device on you. So I'll never forget there was this one show I was competing in and I go in and I do my course. So I do the jumpers for anyone that knows. So I go in, I jump my course and I come out and the judge walkie talkie over to the end gate where you enter the ring and said she has to be disqualified because she has a phone on her and I was like I don't Promise you like, I'll show it to you. It's not a phone. So they ended up being understanding but after that I had to really be conscientious about prior to stepping in the ring, having the person that was managing the in gate radio over to the judge and say she's that does not have a phone. She's wearing an insulin pump. So that was something I found really interesting. Um, but yeah, it was it's definitely an interesting sport to have type one and do for sure. Well,

 

Stacey Simms  38:28

you know, and obviously, you had to educate them and now hopefully the next time somebody comes through that way, they would know that a pump isn't a phone, but I'm curious too, you know, obviously writing horse is not driving a car, but it is one of the few sports where you're, you're not alone, right you have to stretch but work with me here. In a way you're you know, you're controlling the horse you're in charge, you have to be in your you have to have good enough diabetes control, that you know, if you're going low, you can Have you could have an accident you could get seriously injured for sure. Yeah. I mean, that's got to be something that I know your parents would be worried about. But as an athlete, it's it's a little bit more consequential in a way than like my son. He's played every kind of sport but if he goes low and basketball, he's probably you know, he's just gonna get himself off the court. He's he's not taking a horse

 

Morgan Panzirer  39:21

Yeah, it's, it's interesting because there have definitely been times where I'm so invested in riding and what I'm doing that I don't even realize how low I am. So I really have to be careful and always be watching I wear my Apple Watch which is a huge help because I just clicked the Dexcom app and my blood sugar pops right up. So that's made it a lot easier but as you said, there's definitely an added component of stress because if something happens to me, I'm either a gonna fall off and get seriously hurt or be by horses going to be running around loose in the ring. So

 

aren't really ideal circumstances. For sure,

 

Stacey Simms  40:00

my apologies to you and anyone listening who is familiar with equestrian sports hearing me painfully make my way through trying to describe. But I appreciate it. Obviously, your parents have read the book, and they must be so proud of you. But was there anything in there that you thought? I don't know if I want my parents to read this? Are you? I mean, I know it's nothing terrible. But you know, in terms of, I think sometimes the people I've talked to with type one, are worried that they're going to make their parents worry more, even as adults, they just don't want their parents to worry. And I was curious if that went through your head at all, as you were releasing this book?

 

Morgan Panzirer  40:35

Yeah, I mean, there's one chapter in particular that comes to mind where I'm just very raw about my emotions. And at home, I'm not someone who's like that. I'm very quiet. And if something's bothering me, I'll go to my room and deal with it there. So I think putting that all out on paper and having that kind of out to the world and then have my parents read it. I don't want to say I was hesitant, but it was it was interesting because I didn't really know how they were going to react to me being like, Oh, I broke down into tears because they don't usually see me do that very often. So I was, I was a little scared as to what they would think like, Oh, no, is she like crazy at our room? Like what is she doing all the time, but I think they just they were very understanding like, if this is how you want to deal with it, this is how you deal with it. You do whatever you need to do.

 

Stacey Simms  41:25

When I was looking it up on Amazon earlier, I laughed because you know, Amazon has that if you bought this, you might buy that or, you know, bought and there was my book, there was the world's worst diabetes mom and a bunch of other great diabetes books too. But I laughed because I guess with the teenager in the parenting, maybe they put it together. You know, the world's worst diabetes mom is not about really being a terrible parent. It's about the insecurities that we as parents have when we make mistakes with our kids. I'm curious for you. It sounds like your parents gave you an awful lot of independence and had a lot of confidence in you and I Assume your sister as well. Any message for parents of kids with type one who think we're just messing up and we're the worst?

 

Morgan Panzirer  42:07

You're not the worst, I can start by saying that. I think I would say try to give your child as much independence as possible without making it unsafe. My parents, as you said, gave me a ton of independence. And I think it worked really well for me, but it's also really different. So what works for me may not work for my sister. So you kind of have to be willing to cater to your child's needs and what you think will suit them best. But independence for me was key.

 

Stacey Simms  42:36

And then I'll flip it around and say, okay, you're you're a college student. Now you're you're not you know, you're not quite done with being a teenager, but the high school experience is behind you. Any advice for teenagers? type one?

 

Morgan Panzirer  42:47

Yeah, I would say teenage years are tough just because your peers are naturally a lot more judgmental than they are when they're adults. Do what you do. Don't hide anything. If they want to be jerks about it. Let them be jerks about it. That's their problem. And just don't let them get the best of you because I was bullied by freshman year of high school for wearing a CGM on my leg and was shorts on and things like that. So I would just say, don't let the haters hate who cares, they can do what they want.

 

Unknown Speaker  43:18

And for you now, what are you studying? Did I read you want to be an endocrinologist?

 

Morgan Panzirer  43:22

Yes, I am studying biology in Spanish on a pre med track. And I'm hoping to go to medical school for pediatric endocrinology. Did you have an endocrinologist growing up that inspired you? When did you realize you want to do something like this? It's funny, it was kind of the opposite. Hopefully, he's not listening right now. He wasn't bad by any means. But I just thought it would be really cool if I had an endocrinologist who also has type one who can relate to what I'm going through and make me feel like I'm not alone. So if I want that from my endocrinologist, I want to be able to give that to others. So I'm hoping that eventually, if I make it through med school, I'll be able to give that experience to younger children who are also fighting type one. That's great. And then someday you could do the next book, which is actually you can Exactly.

 

Stacey Simms  44:18

Work it. Thank you so much for talking with me. often don't hear about those teen years and growing up with type one until people are adults, so I can't thank you enough for sharing your story. I really wish you the very best with this.

 

Morgan Panzirer  44:28

Of course, thank you so much for having me.

 

Stacey Simms  44:33

I will link up more information about Morgan's book, just go to Diabetes connections.com click on the episode homepage. As usual, there's also a episode transcription. I started doing that in January of 2020 of this year, we're slowly going back the catalog I'll probably put the transcripts in for past shows as well. But you know, there's a lot of shows we're up to episode This is 310 if you're keeping track so I'm doing the best I can with transcriptions but 2020 and going forward getting great feedback on that. And thank you, I really appreciate hearing from you. If there's something that you really like or don't like with the show, and the transcriptions have been a big hit, people listen to the show people read the show, and some people listen while they read the show. However, I can serve you That is what I'm here for. And I'm kind of laughing. But really, that's one of the reasons why I wanted to add the transcriptions. I think there's some excellent information. It's not about me, it's about the information and if you can read it, I know some people just prefer that. So very cool. Thanks again.

And, you know, when you go to Amazon, and you see, it just makes me laugh, right? The you see Morgan's book with my book. I don't know why it makes me laugh. I mean, I'm a serious author now. But I do get a kick out of serious author (laughs). I do get a kick out of seeing people I know or have met, along with my book. It's just really a lot of fun. I don't know. Maybe it's silly, but I really get a kick out of it.

All right, great month of shows coming up. I'm very excited about July because we're going to be talking about selecting an insulin pump, not which pump is best, but how do you select one that's like the number one Question all these Facebook groups? What pumps should I get? What pumps Should I get my kid? We're also gonna be talking about pancreas transplant. I've wanted to talk to somebody who had a pancreas transplant for years and years because you hear you know how difficult it is or how does it even happen. And so we've done that and I'm really thrilled to share that interview with you in the coming weeks. And of course, the fiscal would squares. That chaotic show will be out soon as well. So lots of good stuff coming up. More on the way. Thank you to my editor, chunky tennis solutions. And thank you so much for listening. I'm Stacey Simms. I'll see you back here next week. Until then, kind to yourself.

 

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

 

 

Jul 24, 2020

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!

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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. 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

 

Jul 21, 2020

“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

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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.

Jul 14, 2020

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.

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