Scott Benner 6/7/22 Scott Benner 6/7/22

#696 Double Transplant

Michele had a kidney and pancreas transplant.

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Scott Benner 0:00
Hello friends, and welcome to episode 696 of the Juicebox Podcast.

On today's show we'll be speaking with Michelle who's had diabetes for well over 40 years, but most recently has had a kidney and pancreas transplant. She's here today to tell us all about it. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you're looking for the diabetes Pro Tip series that begins at episode 210 In your podcast app, you can also find it at juicebox podcast.com diabetes pro tip.com, or a complete list of the Pro Tip series and other series on the private Facebook group Juicebox Podcast type one diabetes up at the top in the featured section. If you're enjoying the show, please subscribe in a podcast app and tell a friend

this episode of The Juicebox Podcast is sponsored by Ian pen from Medtronic diabetes, vn pen is a reusable smart insulin pen that uses Bluetooth technology to send dose information to a mobile app. And I'll be telling you more about it later in the program. You can also go to in Penn today.com. To find out more. If you have type one diabetes, and are a US resident or are the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juicebox. Join the registry, complete the survey. And just like that you've helped people with type one diabetes and supported the Juicebox Podcast, they're going to ask you incredibly simple questions about type one, you'll know the answers, they're not going to be difficult. The entire thing will take less than 10 minutes. It is completely HIPAA compliant and absolutely anonymous. T one D exchange.org. Forward slash juicebox.

Michele 2:32
I am Michelle. I have been a type one diabetic for 45 years. And in May of this year, I had a kidney pancreas transplant. So that's why I'm on to talk

Scott Benner 2:47
I Michelle 45 years. All right. This is oddly going to be easy. Because it's 2021. So I just take 20 away, right? And now I'm down to 25 years, then I take the one away down to no way then I'll take 20 More away I get down to 1980. And what am I left with five? Did you were you diagnosed in 1975 76? Close? I was feeling pretty good about that. All right. That's, you know, I was born in 1971. Wow, how old are you?

Michele 3:22
I am 59 years old.

Scott Benner 3:26
You weren't born that much before me. 1962. So I'm just gonna say that a little bit.

Michele 3:33
I'm proud to be this old. I'm lucky to lift as long as I have.

Scott Benner 3:38
I'll tell you right now that I know you're saying that because you have diabetes. Right? Right. And when you're diagnosed, I don't have diabetes, I feel the exact same way. I got up this morning and I was like, I had my pants right. And my back is stiff as it always is. And I think to myself, Do I like Go for it? And just like pick my leg up like a person and stick them through? Or do I lean on something just to make sure I don't stumble?

Michele 4:07
That's pretty sad, but understandable.

Scott Benner 4:13
People want to understand they get older, right, Michelle? Exactly. Okay, gives them something to look forward to. I look forward to having to consider putting your pants on.

Michele 4:26
Struggle some days.

Scott Benner 4:28
I am determined to to fix this somehow. I don't know what I'm gonna do. I'm thinking about different exercises to strengthen. I'm trying different stretches but I just My back is hurt since I was like 20 years old. So I would like that to stop one day. I would just like to get up one day and not think about that. But I'm complaining to a person who had a couple of their organs pulled out and replaced with organs. So why don't I stop that and ask you a little bit about what it was like to have diabetes for 45 years.

Michele 5:00
Well, I was diagnosed at 14. So that was interesting. Because if you're, you know, getting right into those teenage years, and now something's wrong with me, which was very shocking, because I had been held healthy, pretty healthy up to that point. So, you know, I diagnosed spent a week in the hospital went home, I only saw a primary care physician. And I would see him once a year. So he would do a fasting blood sugar. And send me on my way for with my one shot a day of beef, pork insulin. So it went on like that. Boy for probably 10 years or so. Up, a friend of mine was diagnosed. A couple years later, she was she was a semi close friend, but not real close. And she came back from being diagnosed and was like, you know, you have a lot to do. And I'm like, not really take a shot today. That's pretty much it. All I have to do. So I went on for many years really, kind of living a normal life. With this one shot a day that I had to

Scott Benner 6:25
do, yeah. But what was testing like, then, like, how were you measuring success? Or where were you not?

Michele 6:35
I basically was not. So they showed us how to do the urine test. But to me, it made no sense at all to do that, because I couldn't do anything about it. So if it came back, hi, what do I do? There's there was really nothing I could do. They didn't really talk about increasing insulin or decrease in insulin. You know, they had me on the one shot today. So it was very interesting.

Scott Benner 7:02
So you could see you take this injection, and then their advice was to do the urine test strip, and then, but then no matter how the test came back, there was no next step.

Michele 7:15
Exactly. Exactly. So I had to eat at certain times during the day because you'd have those peaks and valleys for the insulin. But I'm a pretty relaxed person. So I wasn't on a strict schedule. It was more if I felt like I was need to do something. I would eat something my mother would make me breakfast every morning. So I would have breakfast right away. But beyond that, I pretty much lived a normal life.

Scott Benner 7:43
Okay. All right, and how long with high blood

Michele 7:46
sugars? Yeah, of course.

Scott Benner 7:48
You were were those urine tests usually high?

Michele 7:53
When I did them, but I quit doing them pretty quickly after diagnosis. I didn't really pay attention.

Scott Benner 8:04
I hear you. So I get that. How many years do you think that you did that just didn't just did that contest and did your doctor ever up your insulin like based on like weight gain or age or anything?

Michele 8:18
I just saw him once a year. And I don't remember him adjusting it. It was always like you're doing fine. Keep doing what you're doing. And like I said he was a primary physician. I didn't even know about endocrinologist at the time. So he diagnosed everything from diabetes to cancer to everything in between. Okay, and

Scott Benner 8:46
let's say Say that again, for me, you saw him

Michele 8:50
from 1976 to probably through college. Okay. So ad one, ad two,

Scott Benner 8:59
so he's not an endocrinologist. He's just a row. Okay.

Michele 9:03
And just a primary care. What general practitioner,

Scott Benner 9:07
what other issues did you have during that time?

Michele 9:10
Um, really? None?

Scott Benner 9:11
None. Okay. All right. So he just didn't do anything. You just kept injecting staying high and Japanese thing. winded. I'm like, I'm guessing that the technology changed somewhere and you changed with it or No,

Michele 9:23
I changed influence. I went to the you know, the synthetic insulin versus a beef pork. When that was available. I saw my first endocrinologist in the 80s because I went to was going to grad school. And I lived with my brother and sister in law and my sister in law was a nurse. So she recommended seeing an endocrinologist, which I went to his reaction was pretty much if you don't fix this, you're gonna die. Okay, and I, because he had me start doing finger tests, like at that point, the finger testing was available. So I would do it. And he had me doing it three times a day. And it was always in the two hundreds. But again, he didn't tell me what to do. And it was a little bit longer till they had that sliding scale, where if your sugar's this, take a shot, if it's this take a shot. So he didn't really give me a whole lot of information. So go ahead. Did you?

Scott Benner 10:33
Do you remember having any feelings about the information that you had gotten prior from the other doctor at that moment?

Michele 10:41
It was kind of shocking. It was like, Oh, I'm supposed to be doing something differently. I didn't know I had, I really didn't know. And but I thought I was doing what I was supposed to be doing. I, you know, do my show today and go on with life. I was went all through college that way. Did my shot a day if I like, spent the night at my friend's house or something, I just go back in the morning and take my shot. So it was just kind of a, you know, crazy time, or you especially now with all the technology that's available

Scott Benner 11:14
and what you can see now. Yeah, were you in your mid 20s. At that point, when you switch the insolence.

Michele 11:20
I was mid 20s. And then shortly after that, I was diagnosed with retinopathy. Wow. So that really scared me.

Scott Benner 11:29
Yeah. When you first get the hay, you're gonna die. If you don't do something talk. Do you even believe it?

Michele 11:37
I was kind of like, yeah, yeah, yeah, whatever. Like, I've been living this way. All this time. No one's ever told me anything differently. But I did what he told me to do, like, I'm a rule follower. So he told me to do this testing. So I did change the insulin I did. So that was my life. But, you know, once the right not that the came out. And I was dating somebody. And at that point, it was like, oh, I need to do something about this, because I don't want to go blind. So, you know, had laser surgery in both eyes. And that was probably 87. And, but I haven't had any eye issue sets. So they have been stable since then. I've got a lot of laser burns in the eyes, but the eyes have been very stable.

Scott Benner 12:34
Okay. Okay. Wow. That's crazy. Okay, so you're, you're so you're still doing it now. So now you're testing and you see your blood sugar's higher. But it takes more time to even get to the point where doctors are talking about making adjustments once you see your blood sugar.

Michele 12:53
Well, right. I mean, we they had the sliding scale, so then I would use that. Okay,

Scott Benner 12:59
about that point, what point in your life? Do you think the sliding scale popped up?

Michele 13:03
That was probably 8586 8586.

Scott Benner 13:05
Okay. That's okay. But it all makes a lot of sense. I'm just thinking back to when my friend was diagnosed in like 88. And I'm just putting the pieces together kind of backwards from what you're saying to this at all, that all lines up for me really well. But so when the retinopathy laser surgery in the 80s? Yes. What was that like?

Michele 13:32
It was a bright light flashing in your eyes. I probably had three times on my right eye, two times on my left eye, they would give a shot to numb the eye, kind of underneath that in their eye. And you would see bright flashes of light. I didn't like it. But I didn't want to go blind. So, you know, I kept going back for those.

Scott Benner 13:57
Yeah. And that and that. Plus, I'm imagining your control started getting better as well.

Michele 14:04
Right. You know, just because now I'm seeing of endocrinologist, I'm seeing a regular doctor. Then I met my husband in 87. We got married in 88. So he was there through the timeframe of the laser surgery. And, you know, shortly after that, I started talking about having a baby. Now my endocrinologist was like, I don't have time for you. So he ended up sending me I'm in Cincinnati, he ended up sending me to University of Cincinnati hospital that had a clinic for diabetics. And they were it was a study kind of measuring the effects of high blood sugar and low blood sugar on children that were born. So I entered that study and the doctors there saw me all you know quite often, even before I got pregnant to get the blood sugar's more in line, but they were proud played a Wednesday was probably still in the eights and nines at that point.

Scott Benner 15:05
I am fascinated that you there was a time where you could say to a doctor, hey, I'm gonna have a baby. And I'm like, yeah, get out. I don't want to be involved in this. But also that he sent you to a study, do you think he sent you to the study? Because they're like, well, this lady is going to provide good data if she gets pregnant, or do you think this study was meant to help you?

Michele 15:27
I really think that he, I think he didn't have time to deal with me and my blood sugar's so he sent me the study so they could deal with me instead.

Scott Benner 15:41
Alright, Michelle, are you telling me that that that standard care wasn't very adjusted, and you were trying to figure out something greater?

Michele 15:51
I believe once I knew better, I believe I stayed on top of technology and things like that. When I was pregnant with my first son, the nurse there had started wearing an insulin pump. And she suggested I get on it. But at that point, I didn't know how those worked. So I had my first child in 91. So I didn't know how the pumps worked. And my belly was so big, like, how is that going to fit on my belly? Because it was Medtronic back then. So I didn't start that till probably 9394, maybe 90, maybe 95 on the Medtronic pump.

Scott Benner 16:36
Okay. Wow. That's a that's really a tale. And now and you're still just, I mean, did you did you end up having a baby?

Michele 16:45
I had two sons. They were both healthy, healthy. They were big babies, but, but I was a big baby. So I'm, I'm sure part of it with the diabetes, but part of it was just having the genetics to have big babies. My first son was 10 pounds, or nine pounds, six ounces. And the second one was 1013. But I was 11 and a half when I was born, and my mother was not diabetic.

Scott Benner 17:15
Any other diabetes or endocrine issues in your family?

Michele 17:20
Yes. So my brother, I'm the youngest of eight. My brother, who is eight years older than me, was diagnosed at 14 as well. But he kept it really private. And he saw the same doctor as I did. So he had to boil his insulin needles and, you know, reuse the needle every day. So it wasn't a big shock. When I was diagnosed. We were all tested, when he was diagnosed. And none of us had it at that point. But I kind of had a feeling in the back of my mind that I was going to get it someday. I don't know why. But so when I was diagnosed, I was unhappy, but it wasn't a big shock. But again, I didn't see him living a very different lifestyle other than, you know, taking his shot every morning. Well, yeah,

Scott Benner 18:11
there was a lot of like, just masked ignorance right about what was Exactly, yeah. How.

Michele 18:17
And the funny thing is, we're a very smart family. We're not dumb. So it just the information wasn't available. You didn't have Google, you didn't have your doctor wasn't telling you. You didn't know it just

Scott Benner 18:30
didn't exist yet. It just you were doing the best that that was available to you. Exactly. How is his health generally?

Michele 18:39
His is not as good. He lost a leg. And he has trouble getting around now. He's still alive. So he's eight years older than me. 67. But not very healthy.

Scott Benner 18:59
Okay. Did he ever make the switch like you did.

Michele 19:04
He finally he got on an insulin pump. Gosh, I don't even know 1015 years ago, but it was much later than I did. And then he did try. He stayed with Medtronic. And he did try their CGM. But really didn't use it very often. And I talked him into the Dexcom. And I'm not quite sure how often he is. He doesn't like to talk about itself. Yeah, so we don't spend too much time talking.

Scott Benner 19:39
I understand. Okay, well, I appreciate you sharing that with me though. That's it's valuable information for the for the big pick. So

Michele 19:45
that's one. Pretty much everyone. All my siblings have thyroid problems one way or another either low or high thyroid. I have a nephew with type one diabetes. And there's talk about an uncle that had diabetes, but there was it was never very clear about whether he was type one type two or what, how that was related?

Scott Benner 20:13
Sure. What about genealogy? Where are your people from?

Michele 20:17
We are from Slovakia and Poland to half of each interesting. Thank you. My grandparents actually came from those countries.

Scott Benner 20:27
My wife's mother grandmother, my wife's mother's mother is Polish, and she had celiac. And they call it the sprue.

Michele 20:40
That's a new one.

Scott Benner 20:42
I guess at some point, it was referred to let me check celiac sprue I think it's been kind of like rebranded as celiac disease. Yeah, but at some point, it was called celiac sprue pets. That was kind of the, the general term for it. And my, my, my wife's grandmother, who was a generally unpleasant person, just she, she'd be like, I have this sprue I can't eat that. And it kind of went like that. That's great. It really, it really hurt her at the end of her life, because she finally I think she finally gave over to the dieting but way late. And, and it just then she was so old that the dieting for celiac, I don't think she was doing it. Well, she just lost so much weight towards the end of her life. Right. But anyhow, okay, so that's a lot. But I understand I appreciate you filling me all in on it. Now let's get to the fun stuff. Michelle winters really get upside down. Because I'm assuming it happened at some point if you ended up with a transplant right.

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Michele 25:16
Okay, so I mean other complications along the way. I have had probably almost all my fingers operated for trigger finger. I had frozen shoulders and both shoulders over time. But see again, you know once once I got pregnant once I was past that I would stay up on technology. You know, I got the insulin pump as soon as I could I got the CGM as soon as I could switch to Omni pod is I think I got the CGM in 2011. Yeah. Got the Omni pod in 2013.

Scott Benner 25:51
So you selling you know, I tried to stay on top? Yeah, ya know, you did exactly what you hear me talking about, right? Like, I'm always saying, you know, pay attention to technology, you don't want to be using the last generation of stuff, you know, keep up with what people are doing, you know, don't switch just the switch. But when it makes sense, you got to keep up because, you know, as we move forward, better technology is going to equal better results and better results are going to equal better health. Right? Yeah. You saw that and you got to it, your your brother either didn't see it, or didn't care to see it one or the other.

Michele 26:29
And he was eight years earlier. So you know, a lot of damage had been done by the time the technology came around.

Scott Benner 26:36
Okay, so you still felt hopeful? You think when when this stuff was available to you, like I can still do something about this for myself.

Michele 26:44
I never thought I never thought I had a shortened life or anything like that. I really just thought, Okay, it's just another piece of me and something I have to deal with. As I move forward. Yeah. So so the eyes checked me. And then over time, it's been a slow progression with the kidneys. So you know, you get a test at the endocrinologist, oh, you're you're creating levels that are higher than they should be. And that went on for years. And then, at one point, I finally said to my doctor, I'm like, should I be seeing a kidney specialist? And he's like, Yeah, you could do that if you want, you know, as the numbers were creeping higher and higher and the creatinine levels.

Scott Benner 27:30
Michelle, test me. Oh, nephrologist,

Michele 27:33
nephrologist. Yes,

Scott Benner 27:35
thank you, Grey's Anatomy, go ahead, keep going.

Michele 27:39
So I saw him and I'm not quite sure how many years I saw him, but I'm still feeling good through all this time. And I didn't really, I really never felt bad. You know, I still exercise I still do all the things that I'm supposed to be doing. I eat right. So then, at the end, January of this year, the GFR, which is what they look at to determine if you need to go on dialysis or have a transplant, it went to 20 or 18, beneath 20. So once it's 20, then you're eligible to get a transplant. So I'm still feeling pretty good. But I knew dialysis is can really be damaging to people. Yeah, so I went to four different hospitals and started just applying for transplants. So I contacted you when I was still in stage four kidney disease. And everything went pretty quickly. So I had to have a majority of tests. You know, you had to make sure your teeth are good. You have to make sure your heart is good. You have to make sure you get a stress test. A colonoscopy like every test in the world. MRIs, CAT scans, they've done every test on me in between January and May. May the end of May, I was finally listed at a hospital for a kidney pancreas transplant. Actually, two of the hospitals would list me one didn't want to because they thought I was too old. But the one I finally went with was really happy with the condition that I was in. They see they said they feel a lot of people younger than me that are in lot worse condition than I was. Okay, so I was listed. And three days later I got a call to get a pancreas kidney transplant.

Scott Benner 29:53
Huh? No, it was so quick. Show. Let me tell you something. So have you heard me talking about my friend Mike? whose past? Yes. Okay. So when he realized he needed kidneys when he started doing dialysis, I would say to him, like, you know, are you on the list, you know, get on the list. And he would always say I can, it's hard. There's money, it's insurance. It's this. And he always felt like, like too big for him to conquer the process. And then you just described how important it was like you went

Michele 30:28
after this, right? Yeah, I didn't wait. But you

Scott Benner 30:32
just were like, I am going to go find out how to make this happen for myself. Exactly. Good for you. Wow. Okay. So

Michele 30:41
right, because the first couple of hospitals I called, they said, No, we don't do any kidney pancreas under over 50. If you're over 50, we don't do it. So then I started doing more research calling around asking, and one of the hospitals I actually went with, told me that they do, do pay increases over the age of 50. But they wouldn't listen to me for that. They would only listen to me for kidney.

Scott Benner 31:08
So Wow. So this is exactly what he used to talk about. Like they always sounded like some people say they'll do both. Some people say they won't, blah, blah, blah, like and so you just had to keep looking to find somebody to do both. Exactly. Michelle, do you not have diabetes anymore?

Michele 31:26
You know, I asked that question yesterday. I'm like, am I type one diabetics? So the answer is, yes, I am still diabetic, controlled with a pancreas transplant. But I have not taken insulin since the transplant.

Scott Benner 31:44
Yeah, that almost made me cry. Michelle, actually, hold on, it might still give it. Hold on, I gotta do that wavy thing that you see ladies doing? Why does that work? By the way, we need to hear up if you just put some cool air on your face. It slows it down. I don't know. I don't either. But trust me, I do it a lot while I'm making this buck. Wow, that's incredible. Good for you. Do the downside of all this is.

Michele 32:12
All right, so there's lots of pills. So over time, I'll reduce the number of pills, because I'm only five months out at this point. So I have to take pills for digestion. I'm told those will go away. Eventually, I take anti rejection pills. So I have three different anti rejection pills, they need to take twice a day. I was recently told I have a low white blood count, which could be related to some of the medicines that I'm on. So you have to be very careful. I am constantly washing my hands. I'm constantly using hand sanitizer, wearing a mask, in crowds, and so on and so forth. So it's not just a breeze. There's still other things you need to do. But I'm feeling better every day. I've got a scar from my chest bones down all the way down. That's healed well. And I think because I was in good health forehand, at least I'm considered myself in good health. I think everything's feeling well. And doing well. Wow, congratulations.

Scott Benner 33:26
All right. So I want to walk through it. You get you get it all set up, and you find a place that's going to do both. Is it fair to say that without the kidney transplant, like what would your life have been like?

Michele 33:43
I had already been tested for doing peritoneal dialysis. So they were already talking about putting the tubes in, which would have been doing dialysis at home every night for eight to 10 hours every night and then another session during the day. So that's taking fluid into your belly, letting it sit there and draining it out every night and every day.

Scott Benner 34:13
And that's not necessary. Even if you did that every night and every day for your whole life. It doesn't mean that things wouldn't continue to go backwards, right? Correct. Yeah. So it's not like you're not stopping it in that even though that sounds like a unpleasant way to have to live. It's not like it would never get worse than there you would continue on. On exactly,

Michele 34:33
which is why I wanted the pancreas because I'm hoping to slow down some of the damage caused by the diabetes.

Scott Benner 34:39
Right. And surgeons must have felt comfortable about it because they gave you the organ Right? Exactly. Yeah. Okay. All right. So when let's start with the day you find out you're gonna get the surgery. What happened? Alright, you when Michelle we've got you know, you're on the list, right? So right Once you're on the list, is it's a matter of matching from donors, I guess,

Michele 35:04
yes, it's a matter of matching the blood type, as well as any antibodies that you currently have in your system. And I don't quite understand all of that. There's a lot of and I've asked, ask people, and they said, it's just it's very, very complicated how they match people with a donor, and you want to be as close as possible to the match, so that you're not rejected. I was lucky to have a B blood type, which means I'm a universal receiver. I can't give to any other blood type than my own, but I can receive from all blood types. So that helped.

Scott Benner 35:45
Okay. And then what was the, the amount of time between? Yes, you can be on the list and hey, we have your stuff.

Michele 35:52
So that was a Wednesday? Yes, you're, you're formally listed. On Friday morning, I got a phone call at 8am. And I didn't answer it because I didn't know the phone number. But then my husband's phone rang. And he answered it, and they're like, Okay, we have a possible donor. You need to hold on and look for this phone number and answer the phone. And if it is going to be your donor, you'll have to come to the hospital to tomorrow morning. So Saturday morning, so you have one day to get your things in order. And in February, I had a new puppy born, so most of that day. So the puppy was born in February, I brought it home in April, thinking I'd have all this time to train her. And so most of the day on Friday, I was trying to figure out what I was going to do with her because my husband works. He can't take care of her. I was working from home, which was helpful because I you know, I could do training in between the times and take her for walks at lunch. So my kids ended up like taking her the day I went into the hospital and drove her up to my sister's house four hours a day so that she could hold on to her while I was recovering.

Scott Benner 37:19
Let's be honest, though. Did your sister do a good job training the dog?

Michele 37:23
She She did a great job. Are you worried she ever lessons? Yeah, no, she did. She's she's an animal lover. She's had animals all her life. And I knew she would do a great job with her.

Scott Benner 37:35
So it must have made your boys feel good to do something. Like kind of like wholesome for you as you were heading into surgery too. I would imagine Exactly. Yeah. How about them? Do they have any autoimmune stuff? The kids?

Michele 37:47
They do not I had them in testing. I don't think it was called trial net then. But because I was in that program. I followed up at the Children's Hospital with testing from for them early on. They hadn't had any antibodies, or whatever the things are called for markers.

Scott Benner 38:06
Michelle, do you think it would be absolutely ghoulish if me if I said trialnet.org forward slash juice box right here.

Michele 38:13
Go ahead, go right. Are you telling? I keep telling my son to have his son tested? And so yeah, I'm all for trial on it. But that was probably the beginnings trial net wasn't really an existence, I think when they started because it was 9193.

Scott Benner 38:31
Okay. Oh, yeah, probably not. You were just getting that testing through a different way. You probably knew a lot of things because of the stuff you did earlier in your life. Right with research.

Michele 38:41
Right? Right. I kind of stayed on top of that. So yeah, they did that we I took them to Children's Hospital for years after that, you know, having them get different kinds of blood tests along the way. And then my younger son recently went back and had more testing done. And he still did not have the markers.

Scott Benner 39:02
So I'm good for him. I'd be nervous too. If you are my mom you understand? Yeah, no kidding. Let's look one more time. Okay, I'm sorry. So now we've got the dog squared away and we're sitting around Are you sitting in your house thinking this isn't gonna happen or it like is it hard to feel hope? Is it I

Michele 39:24
thought, no way is this going to happen? Because I've read you know, my kidney groups on Facebook, I'm on kidney pancreas groups on Facebook and you know the time it takes to get tested and the number of times people have to go and wait at the hospital and then it doesn't match for some reason. So I went on Saturday we went got there at 7am sat and waited and waited and waited they had to go get the organs. They had once they brought the organs back they had to so as I understand it, when they To acquire the organs, they have to wait for the heart to be taken out first, and then the liver. And then so the other organs get taken first, and then the pancreas and kidney come out. So each doctor team, oh, okay does their own organs, so they fluid back. And then another doctor had to take a final look at the organs to make sure that they were still viable when they were back in our location. And I don't know who my donor was, I don't know where it came from. I don't have any of that information unless the donor family wants to tell me Can we?

Scott Benner 40:37
Can we ask you about guilt? Like two things? So did you feel like you were jumping the line? Because it was happening so quickly? And is it a weird thing to be happy about somebody passing away?

Michele 40:52
It is. It is it's, it's odd. But the way I kind of look at it is they were probably already on life support when I got the call. So if it wasn't going to be me, it was going to be somebody else. So that kind of helps me with the guilt of taking it from someone named Michelle, I'm happy it's me. Yeah,

Scott Benner 41:17
I don't think you should feel guilty. I'm just imagining that it has to be a natural reaction.

Michele 41:23
Right? I think if I knew more about my donor, I probably have even more feelings about it. But at this point, I'm just happy. I'm blessed to be able to been on that list at the time I was and been available. I asked them when I was called, is there a backup? And they said, a backup person. Like if I don't give it they will get it. And I was the only person I guess in the country that was a match for this organ.

Scott Benner 41:51
Good for you. I mean, yeah, it's amazing. I would, I would have been like this is nuts. Just because you were probably just resolved right? Like this may happen. It may not happen. It's going to take years.

Michele 42:04
Right? I thought I thought six months, I really thought okay, it'll be a while. Because if it's kidney only the weight per kidney only is like five years plus. Or you can do a live kidney donor, which you can get quicker. And I did have people that said that they would get tested. No one actually had gotten through the testing yet because they don't test them until you're formally listed.

Scott Benner 42:30
I want to know what to ask you so badly. If you believe the people who offered or not, or do you think they do you do? Yeah, okay. I do. I do you know what I mean? Right? Like, I'm not being a I'm not being a jerk. I'm just like, I wonder how many people just out of like, you know, like, are like, Oh, Michelle, I'll get I'll do it. Yeah, I'll do it. Like, you know, do you mean yeah, that's what I was wondering. Oh, this is this is all kinds of

Michele 42:57
friends contacted me because I put something on Facebook just I wasn't asking. I just kind of did my situation update. And two of my friends from grade school that I haven't really stayed in too much contact with over the years. Both offered to get tested. How did

Scott Benner 43:18
that make you feel? Like I imagined it's a it's a wonderful feeling. But do you question it like, Have you ever considered like, I don't know if I'd give my kidney to somebody.

Michele 43:28
I was so grateful. So grateful. It just amazed me how generous people can be.

Scott Benner 43:36
No, it's really fascinating to me. i That's those people. I'd like to talk to one of those people. Somebody somebody that just said yeah, you can have one of my kidneys. That's you don't I mean, like that's a special statement. Right? Exactly. Okay, so you're it's five years of the five years for just the kidney what was what was the expected length for both again?

Michele 43:59
They didn't really tell me but they told me probably within a year, I would find a match. Wow. Because because it's two kidneys or two organs versus one. And pancreas is aren't in as high demand as kidneys are. Oh, I

Scott Benner 44:14
see by asking for the pancreas as well. It moves. So most people are just looking for kidneys. Right? Oh, so by by matching to you we don't waste the pancreas. Exactly. I'm getting it now. Michelle, I'm really coming online here with this. Okay. So, okay, so you're in the hospital. They're like, wow, this is gonna happen. Do you freak out? Are you nervous? Do you have any second thoughts?

Michele 44:42
We waited all day long and I didn't think it was I I tend to think of the worst outcome so that I'm not disappointed. I'm more happy so we didn't really know you know, we're waiting waiting. There's really no word or problem. really their Gosh, at their at 7am, it was probably 12 to 14 hours before they finally came in and said, Hey, listen, we need to do an enema because you're about to go into surgery. I'm like, okay, so all day long, they did not have me eating, but they just wanted to make sure your system is totally clear. And then it happened so quick, like they put me on a stretcher, wheeled me back, my husband saying goodbye to me, as we're wailing back. And I was knocked out.

Scott Benner 45:38
Is there any, any concern about just not making it through the surgery beyond the general concern about being put under?

Michele 45:48
I think my husband was worried about that. I really didn't think that that was a chance. So I just naively, but I just thought, hey, I'm getting this done, and I'll be fine.

Scott Benner 46:01
Did you have that moment on the gurney? When you looked at him? You thought he thinks I'm gonna die?

Michele 46:07
afterwards? Not at the time, but after a couple three comments, and I'm like, Ah, he didn't think I was gonna make it.

Scott Benner 46:16
I gotta be honest with you. I had my appendix out in an emergency situation. And I was like, on the phone to people. Like, I gotta say, oh, no, it doesn't seem crazy to me, they're gonna put you to sleep and cut your body open. I mean, I know people do it all the time. But it's some some people don't react well to anesthesia. So you know, I was doing my diligence column, my call my peeps, you know, let everybody know. But this sounds like it happened super fast for you. How long was the surgery?

Michele 46:51
The original surgery was seven or eight hours. And then the doctor came back and something was too tight. So then I was in surgery for another two to three hours. So in he had to bring the whole team back in, because they had gone home went to bed. So he had to bring the whole team back in and had more surgery. Meanwhile, my husband is there in the waiting room, wondering what in the world is going on going on? And only getting, you know, bits of information back? Oh, we have to take her back in. didn't really explain why they had to take me back in.

Scott Benner 47:30
Let me understand the process seven or eight hours for the surgery come out. You're in recovery. And pretty quickly. They realize you have to go back.

Michele 47:37
Yeah. And I was not awake. I don't remember being awake during that time. So I didn't know anything about it.

Scott Benner 47:44
Okay, something was too tight. And then they can you you know, it's funny as you're talking about this. I'm like, how do they do that? How do they perform surgery for seven hours?

Michele 47:57
I know they had two different surgeons, one for the kidney one for the pancreas.

Scott Benner 48:03
I'm just telling you, I can't stand that long.

Michele 48:05
Yeah, exactly. If you like, some special people. Yeah, they can be called at anytime, day or night, and they have to come in and do the surgery. So they're very special people are go collect, you know, click the organs for more, they need to be collected.

Scott Benner 48:22
My mom has to have surgery next week. And my brother had already made plans to come in to be here a number of days prior to the surgery and after the surgery. And then they up and called us yesterday and said we need to move the surgery to the following week. And I said please don't do that. You know, like I my brothers. My brother's not a wealthy person. I don't imagine he bought refundable airline tickets. And you know, like, right, you know, stuff like that. And so she calls me back an hour later. And she goes, we're just going to do it the next day. And I said, Oh, that's wonderful. Thank you, the doctors just gonna tack it on to the end of his schedule. And I was like, Wow, what an amazing thing. You know, I'll just do one more surgery on Thursday so Bev son can fly in and see her before her surgery. And I was like, wow, yeah, some doctors are amazing. And some you don't get anything out of

Michele 49:12
and I think you know, they have a whole team of people. So I think you know, you've got the original the people coming in that are prepping you and the anesthesiologist and the you've got a whole team of people that do the the closing up afterwards. So I think everyone has their specialty that they stay in for some I'm sure they have breaks during those that 1011 hours

Scott Benner 49:34
still amazing. So you come out how long does it take you to come to and then what do they expect from you? They want you like nowadays they get you moving pretty quickly after surgery. But what was your process like?

Michele 49:46
I I was in the hospital for two weeks.

Scott Benner 49:51
About your I

Michele 49:53
had, like I had some problems. So I think most people are six to eight days. That's what they tell them. But I had some problems like at one point, I couldn't keep any food down. I got Botox in my stomach. Which was, you know, I joke that I got Botox, but it didn't make me look any better. I imagine what that was supposed to do is make your stomach more active to move the food through because I was having trouble keeping anything down. Then electrolytes were kind of out of balance. So I had to have fluid and magnesium and potassium and phosphorus and all those kinds of things added.

Scott Benner 50:34
Were you in danger? Or is this just things they had to do? It?

Michele 50:40
This was ask your question again.

Scott Benner 50:42
Were you in danger? Or were these just steps that needed to be taken? Because

Michele 50:46
no, I think this is it was pretty common. Okay. For the surgeries. Just did people have different kinds of imbalances after that type of surgery?

Scott Benner 50:58
Okay, two weeks, and, and when did the medications begin, right away, antirejection, all that stuff, right away, right away,

Michele 51:08
right away. And then for the first three months, they're really, really careful with you because you have so many anti rejection pills at the beginning. And they say really, within the first year, it's really important to stay healthy through that first year.

Scott Benner 51:24
Did you ever hear Nicole's episodes about her surgery?

Michele 51:28
I did. Yeah, I did. I've listened to you quite a bit. And I'm actually still listening. And I don't know why. It's kind of crazy. But I contacted you back in 2016. When I had my agency had gotten to 6.3. So I messaged you on Facebook. And you said congratulations. Then after that. I was volunteering with JDRF and trying to get people set up for booth at our JDRF tonns event. And I contacted you and you said you couldn't come out to get a booth. But you could maybe do flyers or something and you never sent them. And

Scott Benner 52:21
so I'm very busy. I'm a one man show here. I'm so sorry.

Michele 52:23
I know. Well, then then you came I think the next year or the following year and spoke at Cincinnati. JDRF. tell

Scott Benner 52:31
people how good I was.

Michele 52:33
You were excellent. Did you talk during the luncheon?

Scott Benner 52:38
I did I asked for that actually. Because while everybody's busy wanting their own little space. I'm like, I always think everyone there has to eat and they eat at the same time. So I get to talk to everybody if I eat if I speak during lunch. There you go. Yeah, it's a I remember that there's a big room. It was a really well run event as well. Exactly. Yeah. No, i i It's uh, as far as those things go, I think of that one is almost a gold standard. The person who runs that chapter is type A and the best way and that that event goes off very, very well. I you know, I met Chris Rutan there for the first time. I met him in person.

Michele 53:23
Yeah, I saw him speak when he was there.

Scott Benner 53:25
Did you Okay, yeah. Okay.

Michele 53:27
And then. So, so yeah, I was actually on a panel that day of adults with type one. So the night before they had that reception, and I met you briefly while you were there as well.

Scott Benner 53:44
Oh, at the home was someone's home. Yeah. What is? What is art asking me Hold on a second. I'm sorry. You're fine. She's like, can I call? Can I call who? Me? I'm sorry, this is out of nowhere. I'm trying to figure out what this is. She's had trouble with her loop app earlier. And I helped her through it. Okay, she's gonna call me let's find. Let's find out why together Michelle. I'm just gonna keep Okay. Well, I'm gonna take off one of my earphones. Hey, alright, what's up

Oh, are you home still

so, honey, the problem is there's a little bit of a there's a glitch in the loop app and I need to reset it. So we have to have your the Bluetooth has to be off for like 20 minutes before we do it. That's why I had you do it when you came home when you told me it was working okay, so it's not gonna work till we make this little adjustment in the timezone. It's a glitch in the app. So when are you coming home again? were you headed to a restaurant? Oh, okay, well shut your Bluetooth off. Bring the food home when you get here. Come right to me and we'll do the fix. Okay, and watch your blood sugar on your deck. Stop yourself. Alright, bye. Sorry, Michelle technology let us down there. There's a small glitch apparently in the version of the loop app that Arden is using. And if you try to change the insulin sensitivity, and the timezone in the app is wrong. It crashes the app. So anyway, I don't know if that sounds like gobbledygook to you or not. We should I lose you. Michelle. Michelle, the show my Hello Michelle. Hello. Hello. Hello. Michelle. What the heck? Alright, I'm gonna stop recording. Michelle. Michelle, Michelle. Michelle. Michelle. Hello. Hello, Michelle. Michelle. All right. I'm gonna send her a chat. And you hear me? Hello. This is the end. Aquarius? Why would that song pop into my head? On Aquarius. Michelle Deanna, I can hear her typing. And she's not answering me. See if I have a phone number for do. This is boring. There's no way I'm leaving this in. And yet every time I say I'm not going to leave something in. I totally leave it in

Alright, I've texted her. I said, Hey, it's Scott. I can hear you typing but you can't hear me. And then I said it out loud. In case you maybe would hear people do not want to make a podcast. It's a lot of work. And sometimes it's irritating. And annoying and weird. Why is she unable to hear me? Michelle? Michelle. Michelle. Michelle. Michelle. Michelle. Hello, Michelle. She is not here

all right. I'm gonna call her will she answer this while she thinks she's making a podcast? No, right.

Michele 58:47
I can't hear you at all.

Scott Benner 58:49
Oh, okay. Michelle. Huh? She can't hear me at all. Why would she not be able to hear me?

Michele 59:06
I don't hear you. Hey, Michelle. I

Scott Benner 59:08
know we're on the phone now. But I hear you fine. And you're not hearing me. So let me I hear you through the phone. Yeah, let me figure out why that is. I don't know why that would be on

Michele 59:19
mute somewhere.

Scott Benner 59:22
I'm looking that looks right. Nothing here changed.

Michele 59:29
The lower left hand mute my audios that

Scott Benner 59:33
No, I didn't mute anything. I actually was like, keeping you on. I was recording with you. I wanted you to hear the phone call. Like just because I thought I didn't know if it would be interesting for the podcast. Not like I'm not muted. I'm gonna mute myself now. And then unmute myself again.

Michele 59:50
I heard the first part of the phone call but then it went away.

Scott Benner 59:54
Wait, can you hear me now? Through your computer? No. That's insane. There's nothing different here. All right, well, that's no,

Unknown Speaker 1:00:06
I hear you now.

Scott Benner 1:00:07
Oh, okay, I'm hanging up the phone. Now you can hear me. Yes, that doesn't make any sense. But who cares? I'm sorry. So you, you didn't hear all that Arden's having problems. Her loop app has a glitch in it, and it crashed the app. So she's gonna have to come back here in a couple of minutes. You're gonna hear me fix the app again. But she'll be in person when that happens. So I don't think anything should change on the audio. Okay. Okay, I am sorry, that was so long. I forget where we were. But I hope you

Michele 1:00:40
I don't remember either. We talked about post surgery.

Scott Benner 1:00:44
You were going through your medications and and everything you were taking after post surgery, told me that you had some trouble digesting. And then

Michele 1:00:54
yeah, that was in the hospital.

Scott Benner 1:00:57
Sorry, we were in in Ohio. You were telling me about being there. And I was getting ready to ask you. Because you were talking about having seen the been listened to the podcast for such a long time. So why why are you still listening to the show?

Michele 1:01:12
Don't know? The stories are interesting,

Scott Benner 1:01:16
I guess. Yeah. Do you feel bad for not having diabetes anymore?

Michele 1:01:20
No, I don't feel bad. I do know that my body can attack my pancreas again, because I'm still have those more markers that I had before. Those don't go away. Yeah.

Scott Benner 1:01:34
Right. And so it is possible that you could just get type one again with your new pancreas. Right, exactly. Is that based on other transplants?

Michele 1:01:46
I haven't found them. People, like the hospitals will track transplants, like after one year after five years. And they don't do a great job of tracking things after that. Okay. Which is kind of interesting.

Scott Benner 1:02:03
Gotcha. Well, let's just say that would suck. And I hope that doesn't happen.

Michele 1:02:09
Me too. Me too. But I think the technology will be so much further by then. That it won't be such a pain.

Scott Benner 1:02:17
Yeah, well, I mean, you you really are pretty caught up where you are until all of this until you put your pump in a drawer, I guess. Right? So like retiring? Did you like fold it up and put it under your underwear or something like that? Or?

Michele 1:02:27
I wore the Dexcom for about two months afterwards? Because I was afraid it was gonna get the sugars were gonna go high. And then it ran out one time. And I'm like, I'm not putting that back on. Why should I wear it? Okay, so I quit worrying. It

Scott Benner 1:02:44
was pretty cool. It really is. How scary is it to have all this going on during COVID.

Michele 1:02:52
It's worse during COVID. Just I feel more isolated. I can't really it my problems are kind of like COVID, where you can't see COVID. And you can't see all the germs in the system. So you don't really know where it's safe to go and what's not safe to do. So if I'm in public, if I'm in a group of people, I'll wear the mask. If I'm just around a few people I won't. It's much more easy to find a mask than it was probably prior to COVID. Yeah.

Scott Benner 1:03:28
You go all the way using it again. And 95 mask? I do. Yeah, I would. Yeah, I put one over my eyes. If I was you, just in case.

Michele 1:03:37
I know. I work I work glasses most of the time. So I'm a little protected.

Scott Benner 1:03:42
I would wrap my whole head in one, just bubble wrap people would be like what's wrong with her and I'd be like, I just had a transplant. Get away from everyone get away from me. But the feeling of isolation is real. It's terrible. You know, so I feel free there. And you said the first

Michele 1:04:01
I just had a baby granddaughter. I have a three year old grandson and a newly born baby granddaughter, and I've gone over there and saw them. I wore my neck the whole time because I'm worried for her too.

Scott Benner 1:04:15
Yeah. But congratulations. That's lovely. Thank you. Good for you. How's your husband handle all this? Has he been helpful? Did he do like is he like, standard guy thing? Does he stand in the corner and wait for you to need something? Or has he kind of jumped into action?

Michele 1:04:31
He he tries to be helpful. I mean when I was in the hospital. So the hospital was two hours away from Cincinnati. And I had to go two times a week after I was released from the hospital. So I actually had my top four brothers and sisters are all retired and they spent a week to 10 days with me and driving me back and forth because I couldn't drive for a while and But he would when I was in the hospital, he would come home from work, drive the two hours, sit with me for two to three hours, drive home. And then you know, wake up the next day do the whole thing again. So he runs his own business. So he doesn't have the luxury of just calling in sick, you know, he's off to do the work.

Scott Benner 1:05:20
Somebody got paid for those pills.

Michele 1:05:22
Exactly. Do you and I'm still working. So I carried the family insurance, which is good.

Scott Benner 1:05:30
At this point. Yeah, good for you that you're able to work through the they gave you would you take like FMLA little medical leave, and then come back start

Michele 1:05:39
short term disability for the first three months. And then I came back and they're allowing me to work for from home for six months, because the hospital requested that I do that. Excellent. How do you like working from home? I love working from home. So I've been working from home for a year and a half now. And it's awesome.

Scott Benner 1:05:58
I have to admit, I enjoyed myself. I don't know like the best probably is just very, you know, I don't know how interesting this is to people. But I love that I can get up in the morning, do a bunch of my work, record an episode, go, you know, grocery shopping, if I have to then come back and start working again. Like it's so it's so nice not to have to do stuff like that. At the end of the day when you're exhausted. It's so much easier to work until you're tired and then stop at the end. I do find that I work too long. Because I because my job's at home. Yes, but But I do like the knot. I do like that part of it like getting to break up the day. I do wish I had to move around more though. And that that. Well, that's right.

Michele 1:06:43
I did get my puppy back. And she has way more energy than I ever expected. So I get out at lunchtime and take her for walks. I'm up to like, I don't know, a mile and a half a day taking her for walks. So that's good.

Scott Benner 1:06:57
How long did your sister have the puppy?

Michele 1:07:01
About three months? Wow.

Scott Benner 1:07:02
Did she have trouble giving it back to you?

Michele 1:07:05
I think she was ready for me to get her get her back.

Scott Benner 1:07:09
So not attached. She's like, Please somebody come kick this

Michele 1:07:12
off. She was shocked at the puck he still remembered me. But she did. We met about halfway and picked her up. And she still remembered me and came home and is very attached.

Scott Benner 1:07:25
That's excellent. Good for you. Is there anything? We haven't gone over that I've missed? Because I don't understand the whole process?

Michele 1:07:33
I think we hit a lot of things. I don't I don't have anything that I can think of off the bat.

Scott Benner 1:07:41
Yeah, what is your moving forward look like? Oh, you thought it's something go ahead.

Michele 1:07:46
I was just gonna say the reason I wanted to why I didn't really want to be on the podcast. But the reason I contacted you was because you can't find anybody going through the kidney issues. Like there are a lot of people online but no podcast, no type one diabetes, talking about complications and things like that. And I wish I you know, I listened to Nikki, listen to her calls, but having people with real life experience is so difficult to find. So I broke down and said, Okay, I'll be on the podcast and contacted you and you're like, Okay, set it up.

Scott Benner 1:08:30
Let's go. I'm very grateful for this. And I agree with you there aren't I mean, listen, if you have a four year old that just got diabetes, I don't know how fun this is to listen to. But, you know, I think there's some solace that comes from the fact that you were diagnosed, you know, in the 70s, your care is nothing like care is now. But in fact, there are still people who don't, who don't pay attention and or don't have the tools or don't have the knowledge or whatever you want to say, to create, that you still can create this problem for yourself in modern times. You know, and so it's, it's good for people to know what could happen, you know, people who are like, Oh, my blood sugar is just 200 all the time. Well, that's what yours was. Right? You know, and,

Michele 1:09:16
and I was just naive. I'm sure there was more things I could be doing. You know, the more I talked to people or volunteer with JDRF there are people that have been diagnosed as long and knew more than I did at that time, right? Yeah, yeah, I just didn't have the the contact

Scott Benner 1:09:33
information just did not have access to the information. That's why I like to have people on to talk about all kinds of different things. Because I know there are some people are going to be like, don't you know, why are you telling me about complications, but it's so that you understand the big picture, and so that you can then apply it back to your life and think maybe I am missing out on something the way Michelle was missing out on something. Great. Did you enjoy Mike's episode about complications? Which one was that? Very recently it was an after dark about complications. Oh, yeah, yeah. I listen to that one. Yeah, that's the kind of stuff that has to be said once in a while, like you said, because nobody talks about like, I mean, I'm, I'm nearly 600 episodes into this, as I'm recording this right now, no one's ever no one has ever once contacted me and said, I want to tell you what it's like to be on dialysis. You don't think there are people listening to this show who have been on dialysis who are on it now. And no one's ever reached out and said they want to talk about it. And I understand that, but I'm saying there are plenty of people out there that might benefit from hearing from those people as well. Exactly. Yeah. I'm glad you did this. Thank you.

Michele 1:10:42
You're welcome.

Scott Benner 1:10:43
Let me just ask you a couple more questions, and I'll let you get back to your life. So moving your your new lease on life, moving forward, is your it's about staying healthy, staying away from being ill taking your pills, but what other milestones are you looking forward to or having to reach?

Michele 1:11:03
I want to start traveling again. So we're possibly doing something in February, we'll see. I still have to make reservation. So we'll do that. I'm spending more time with my grandkids that's on the top of my list.

Scott Benner 1:11:20
You want to travel somewhere warm?

Michele 1:11:21
I want to retire soon. But it's kind of out of the picture right now. It's I carry the insurance. And I'm too young for Medicare set. Well, I actually I'm on Medicare for three years, but my insurance is primary and Medicare secondary for 30 months. So how did you get on this early because of the end stage renal disease. So as soon as the transplant hit, I'm eligible for Medicare for three years. Gotcha. Okay, that only takes me to age 62. So it's still another three years in between till you can go on or I can get insurance.

Scott Benner 1:11:55
Right, right. I understand. Wow, that's a little scary to me. Yeah. But you'll you'll, it sounds like it. Listen, I gotta be honest with you, Michelle, you kick an ass. So I don't imagine you can't get any of this done. You took the bull by the horns about 16 times in this story. And ended up getting everything you needed. So I'm really impressed with you. Seriously, thank you. Yeah, thank you. Good for you. All right, I'm gonna, I'm gonna say thank you and let you go. I really appreciate this.

Michele 1:12:27
Okay, thank you. I appreciate all that you do. Oh,

Scott Benner 1:12:30
it's my pleasure. It really is. Hold on one second. I'm gonna say goodbye to you like privately. Okay.

A huge thanks to Ian pen from Medtronic diabetes for sponsoring this episode of The Juicebox Podcast, head over to Ian pen today.com. To find out more, you can also find those links in the show notes of your podcast player, the one you're listening in right now probably at juicebox podcast.com. Don't forget if you're a US resident, please go take the T one D exchange. Survey. Take it from me t one D exchange.org. Forward slash juicebox. Thank you very much for thinking about doing that. Alright, so we thank them pen. We thank you. Who do I thank you. I will thank you in a second. We asked you about the T one D exchange. What else should I say to you before I let you go? I don't have anything. Oh, my goodness, my mother, where are my manners? I want to thank Michelle for coming on the show and sharing her story. How crazy is that? That she got that transplant so quickly. Absolutely stunning story. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. Oh, I'm sorry. You know what I Michelle sent me a note later she said when we were talking about other autoimmune stuff in her family. She neglected to talk about her sister who had Ms. She said it progressed very quickly. And she passed from it at age 48. Her sister was six years older than Michelle. She asked me add that and I wanted to wanted to do that for Okay, so again, thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. If you're enjoying the show, please subscribe or follow in a podcast app like Apple podcast, Spotify, Amazon music, wherever you listen in an app. If you're enjoying the show, tell a friend about it. Or an acquaintance or anybody you think might enjoy it. Tell your doctor about it. Tell somebody Thank you. This show grows when you share it with people and that's why I asked you to do that. Alright, that really is that now I'm gonna go I hope you have a good day.

#695 Allergic to Insulin Part III

Morgan has type 1 diabetes and is allergic to insulin.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 695 of the Juicebox Podcast.

Today we're going to be speaking with 17 year old Morgan and her family. Morgan has type one diabetes, and she is allergic to insulin. Please remember, while you're listening today that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your healthcare plan, or becoming bold with insulin. This is a standalone episode, but if you really want the full context, you should also listen to episode 504. Allergic to insulin with Sasha and episode 578. Allergic to insulin part two, with Dr. McCann, Who is today's guest, Morgan's doctor. Hey, if you're at type one who is a US resident or a US resident who is the caregiver of someone with type one, please go to T one D exchange.org. Forward slash juicebox. Join the survey take during the survey. Join the registry, take the survey. support people with type one while you support the Juicebox Podcast T one D exchange.org. Forward slash juicebox. This episode of The Juicebox Podcast is sponsored by the Contour Next One blood glucose meter. Learn more and get started today at contour next one.com forward slash juice box, you can use the meter that my daughter uses. It's small and convenient, and very, very accurate. Contour next one.com. Forward slash Juicebox. Podcast is also sponsored by touched by type one. They're an organization helping people living with type one diabetes. They're touched by type one.org. They would love for you to check them out and find them on Facebook and Instagram. All right, I'm gonna hit record. And then I just need to test everybody. So just Morgan just say hello.

Morgan 2:18
Hello.

Scott Benner 2:19
Perfect. Go ahead doing Kyoto. Hello. Excellent. And then of course, Jennifer. Hello. We are all being recorded. Just lovely. All right. Okay. Let me wrap my head around how we're going to do this. Usually I just tell somebody to introduce themselves. But why don't I do that a little bit. Oh, hold on a second. Before we get going. Whoever's computer's making the sounds is that a PC or a Mac? PC PC? Do you know how to stop it? Because I only know how to stop it on the Mac.

Dwayne 2:56
I was just adjusting the volume, so I won't be doing that again.

Scott Benner 2:59
Okay, all right. Oh, I thought it was like you got an email or something like that. All right. You know what? Let's just do it the way I usually do it. So let me tell you this. You don't need to use your last name. As a matter of fact, unless you really want people to know who you are. Don't. That's up to you guys, though. I don't care. Honestly. Why don't we just sort of go around the horn like Jennifer, go ahead, introduce yourself.

Jennifer 3:26
My name is Jennifer. We are living in Texas. We've lived here for three and a half years before that. We lived in Utah. We have a daughter that's type one diabetic and she's allergic to insulin.

Scott Benner 3:42
Okay. And that's you right, Morgan? Yeah. How old are you?

Morgan 3:48
I'll be 18 on September. Oh,

Scott Benner 3:50
my daughter's gonna be 18 in July. Are you going away to college?

Morgan 3:54
No, I still have senior year. Oh, no

Scott Benner 3:57
kidding. Oh, well, then you're gonna have a good time. And Dad's here, right? Yeah. Go ahead. Introduce yourself.

Dwayne 4:05
Hi, I'm Dwayne. originally born in Texas. I had moved to Utah for several years. Before I met Jen and the kids and we ended up getting married. And when my kids are here, we have, you know, six kids all together. And then we move back here for work and close with my family. Oh, that's

Scott Benner 4:26
amazing. So, Jen, you have how many kids of your own? I have four for Morgan the only type one? Yes. Is there any other auto immune among your children or your side of the family? Celiac? hypothyroidism, anything like that? Nope. Just the type one. Okay. And Morgan, how old were you when you were diagnosed?

Morgan 4:51
I was seven. Oh, okay. Well, this

Scott Benner 4:54
is gonna be interesting, isn't it? I'm gonna give a little backstory now. So I did an episode with Sasha who was right, allergic to insulin. And not long after I put the episode up. I got this email from a doctor who has since been on the show, so you can share her name Morgan, what's her name?

Morgan 5:15
I'm Bonnie McCann,

Scott Benner 5:20
you call her body?

Morgan 5:22
Occasionally. Nice.

Scott Benner 5:25
She's very nice. I had the opportunity to talk to her a number of times. She was on Episode 578, which is called allergic to insulin part two. And Sasha was on 504 allergic to insulin. So I did not know until I heard about Sasha, that this happened to people just absolutely crazy. She came on, she explained what was happening to her. And I just I don't know, I was stunned by it. So Morgan, I want to start with you a little bit. Can you tell me when this began? And how it impacted you? Do you know how old you are when it started?

Morgan 6:00
Yeah, um, probably a year or so after I got diagnosed, it started starting to get painful and getting really large lumps and swelling where shots were done. It was just getting bad for it and got progressively worse.

Scott Benner 6:21
So you would say that almost 10 years ago this began. Yeah. And it was only with your fast acting insulin.

Morgan 6:29
Um, no. It was also my long acting.

Scott Benner 6:32
Really. Okay. So whether it was basil or or your meal and your Bolus insulin, you were getting painful sites. Bumps, was there itching or burning or anything like that?

Morgan 6:45
Definitely burning. Yeah. Okay,

Scott Benner 6:47
so Wow. And there was never a break. You never once gave yourself like an injection. You were like, Oh, it didn't happen. This time. It was consistent. Okay. What's the level? You must be like the toughest girl in Texas, right? Like you? Do you like fall over and bump yourself and be like, it's nothing. I just keep going. How do you go? Yeah, right. I mean, how do you? I guess it happened to you when you were little. Right. So So Jennifer, can you can you tell me a little bit about the first time this started to happen, it must have been a panic. Um,

Jennifer 7:24
well, the thing is, is that was kind of progressive. So at the very beginning, you know, of diagnosis, it was injections, but she was so little, she was getting small amounts of insulin. And a year after we got her on the pump, and started doing the pump, but as she, you know, got older, needed more insulin, it started to have reactions of pump sites being read red, inflamed, painful, itchy. And so, of course, we went to the mode of it must be, you know, the adhesive. So then we are trying barrier wipes and different methods, you know, MSB adhesives, then, you know, she wasn't having issues with other things like the Dexcom, she was having issues with the adhesives and stuff like that. So then we thought, well, it must be the catheter, you know, a plastic, so we went to metal, or vice versa. And either way it it still was having reactions. And we thought, Well, maybe it's the how Gauahar wipes because, you know, it's kind of, you know, abrasive. So, we were cleaning sites with, you know, water and soap before putting a site on just to see with that, and that wasn't working. And I remember talking to a nurse on the phone and asking her, you know, could it be the insulin? And she's like, That can't be. And I said, Okay, well, all of these reactions that she's having, is this normal. And she's like, No, how long? Oh, okay, what else?

Scott Benner 9:42
Thanks for your input. Jen. How long do you think from when it began the just the reading and the soreness to when you said to a nurse, hey, could this be the insulin How long did it take you to get from point A to point B on that?

Jennifer 9:55
It was probably a year and a half. Try different things, and it it, you know, not changing. It wasn't changing. And so I remember them deciding to do a different insulin, just to see if it, you know, would be. So different reactions

Scott Benner 10:20
and we're not throwing anyone under the bus here because Morgan's not just allergic to one insulin and not the others or something like that. So, so what what insulin did you start with? What was the first experience?

Jennifer 10:30
The first, the first insulin that she had was Novolog.

Scott Benner 10:34
Okay, then what you go to?

Jennifer 10:35
Yeah, you know, regular. And then we tried? Sorry. It's like, are these insulin?

Scott Benner 10:50
Sorry? Do you try Humalog? Okay, yes. And then when that didn't work? Did you keep switching? Or did you say to somebody I'm telling you to think and so on.

Jennifer 10:59
So we switched again. And we went to we saw an insulin called the P drug pager hadn't heard it before.

Scott Benner 11:07
It's the one my daughter used this, by the way for years. Yeah, my daughter's been using the future forever. And then then when that didn't work for you, just so being really serious once you get into this situation, and I sort of want to hear about this, from everybody's perspective, you're basically being told the oxygen your breathing is burning your lungs, but you can't stop breathing? I mean, is that incredibly difficult to make peace with?

Jennifer 11:36
It? It was it was difficult. Because, you know, I was, I was willing to try anything, anything, you know. So, pump sites were horrible after three days. So then they switched it every two days. Every one day of you know, having to change her sights and hopes that, you know, she wouldn't have a reaction. Yeah. And after 24 hours, you know, the doctor that she was seeing at the time, he's like, I've never seen a pump site like that before.

Scott Benner 12:10
Okay. And that was like, Well, great. Yeah. It's almost like taking your car to the mechanic. And you know, they don't know how to fix it. And they just start saying, like, well, we're just gonna swap this part and see what happens. And, and so do you get hopeless? Oh, yes. Yeah. Yes. Morgan, can I ask you like, did you ever skip insulin or anything like that to avoid the pain?

Morgan 12:35
Um, I would try to a lot. Yeah.

Scott Benner 12:38
Is this I mean, did you did you go to therapy for this Morgan?

Morgan 12:43
Um, not to have recently have we tried it?

Scott Benner 12:49
Yeah, I mean, it just, I'm, I don't know like, I know you're on the spot here. But can you put it into words what it's like to use something when you know it's going to hurt.

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Can you put it into words what it's like to use something when you know it's going to hurt?

Morgan 15:42
Very difficult, and a lot of trying to convince yourself that it's worth it.

Scott Benner 15:50
What are you convincing? I don't mean to be morbid, but are you convincing yourself that being alive is worth it.

Morgan 15:56
Um, at times, the pain would get very extreme to where I didn't want anything to be touching me. Not even like air going on me. So it was a lot to just be there. But then also, hey, you got to do more because your blood sugar's high or a need to do more, because you want to eat, right?

Scott Benner 16:21
And I'm imagining, tell me if I'm wrong. But when they started saying like, move your pump every 24 hours, all it did was make more sore spots on you, right?

Morgan 16:29
Yeah. Okay. The sore spots also lasted for like days. So you'd move it? And then it would be trying to find another spot in between parts that already hurt, because they hadn't held yet.

Scott Benner 16:43
Did you have the extra burden? Were you trying to hide them from other people? So they couldn't see them as well?

Morgan 16:48
Um, occasionally, yeah, I would, because I didn't want my friends and other people to see how red and ugly it would look. So I tried to focus the shots in the sights, where people would have it covered by their clothing.

Scott Benner 17:14
Yeah. Did you ever try change? I mean, did you ever go to the extreme of changing your diet significantly?

Morgan 17:20
Um, I try to eat a lot the US or avoid snacks? What?

Scott Benner 17:25
Were you able to avoid this turning into an eating disorder?

Morgan 17:30
Um, yeah, for the most part.

Scott Benner 17:33
Good. Okay, that's very cool. It's just, it's already difficult, as you know, you know, I mean, this. It's funny, funny, in an awkward and odd way. But this description of like, every injection is a hill to climb. And you know, something to get over. It's it really is how diabetes is anyway, even without the you don't I mean, even without the pain and the the allergic reaction. So you're adding, I mean, you're just multiplying it, right? It's just, yeah, that's insane. And you were so young for a while. I imagine it got more difficult as you got older and became kind of more self aware. Yeah. 100%. Okay. So when you were younger, you were just doing what you were told. And it hurts. Yeah. Did you ever? Like Jennifer, did she ever tell you? No, she ever just say I'm not doing this?

Jennifer 18:30
Actually, Morgan has been an amazing, you know, diabetic, you know, if you could be one like she, she never complained. Do you know? I mean? Yes, she would tell me, Mom, it hurts. It hurts. I don't want anything to touch it. But yet, she never told me. I don't want to do this anymore. Like, you know, I don't want to have you give me an injection. She was just, you know, okay, this is what we have to do. And I, I've always been one to try and be positive that, you know, I am all for, we're gonna find an answer. We're gonna, you know, we're gonna do this. And then it was also, you know, she, she would ask, you know, why me? And it would be, we're going to have an answer. And we're going to be able to help somebody else. This is, you know, we're going to do this. And so I hope that I was one that never gave up hope for her. You know, if she didn't have it, that I could give it to her.

Scott Benner 19:44
Okay, that's amazing. Can I ask you to be a little more honest? Did you believe it when you were saying it?

Jennifer 19:51
Um, at times, it was difficult. I can't tell you how many times I was crying for her. Um, which, if anybody knows me, I cry over everything I can cry when I'm happy, mad, sad, you know, but it's just one of those things of seeing your child go through something which, you know, you see that with diabetics, you know, I wish I could take this away from my child, but then to see them in constant pain and have no answer. It's, it's very, it's very hard to be positive. But, you know, I've always been determined that I'm going to help her I'm going to find something we're going to do this. So,

Scott Benner 20:43
Morgan, were you aware that this is how your mom felt? Yeah. Did that make you feel bad? Like guilt?

Morgan 20:50
Um, yeah, occasionally. always felt sad or upset with myself, even though I knew I wasn't the one causing her to be hurt.

Scott Benner 21:05
Are you allergic to anything else? Morgan? No, not that we know of even like, you don't get bad hay fever, anything like that at all? I don't think so. No kidding. Wow. Morgan, that's just some I was gonna curse. I'm sorry. We all don't know each other that well, but just some really bad luck. How terrible. Can I ask Dwayne, you have an interesting perspective, because you're not Morgan's natural father, but what's it like to sit back and watch this happen?

Dwayne 21:39
Well, I did work as a pharmacy technician for a long time. So the concept of somebody becoming allergic to something wasn't really new to me. Because everyone's body reacts differently. You know, this person is allergic to penicillin. These people are not, you know, so, you know, I just went into automatic mode and like, Okay, let's try different syringes, different manufacturers, you know, just went through the whole process of what I was trained on when I was a tech, and it's been rough. You know, I, last summer, I went to wake her up, and she's lying on her floor. And you know, that's the first time and she was unresponsive to and so that was really nerve racking. And it's like, I want to help her to make her feel better. And, you know, I keep coming up with ideas. Well, to me, let's try some lidocaine on that spot. We'll see if that helps with with this. You know, try some ibuprofen. Right, so Benadryl, you know, just went through all those steps and just trying to find a way to help ease her discomfort with all this was just, you know, disheartening, because? Nothing. Until recently, have we been able to find that solution?

Scott Benner 23:02
Yeah. Morgan, what were you on? Why are we on the floor? Were you in DK? Um, yeah. Were you not taking your insulin?

Morgan 23:10
Um, no, we had been my blood sugar just got to the point of it not absorbing any of the insulin and getting so high.

Scott Benner 23:19
Oh, from the inflammation at the site, you weren't getting good. Oh, I see. Oh, that's scary.

Dwayne 23:25
That's why she had to move the pump site every day, is because you get that tissue swelling, and just heard your absorption at that spot. So you have to move it to another spot, but then that that slow moving insulin finally hits her system. And so she would go into Ultra lows sometimes after being high, because she gets like a Bolus along with her. The other shot at new site.

Scott Benner 23:50
It's just like a cruel joke. We're gonna I wanted to ask, Oh, God, I had a question for you. I think it might have just fell out of my head. Because that was upsetting. And I'm still recovering from Jen, you almost made me cry about five minutes ago. So I had your voice broke once I'm like, I'm gonna cry. So Oh, my question for you, Morgan is is kind of simple. Maybe you will know the answer. And maybe you won't. But did you? While everybody's working so hard to try to figure this out for you? At what point? I'm guessing you gave up at what point did you just go along passively because they were trying like When did you stop believing anything was ever going to help?

Morgan 24:32
I'm probably after our first time with testing out to see the different area actions to all the different insulins that we had. We had gone to this one allergists and I remember just going to get it tested. And just giving up because the reactions didn't show from how a little mountain diluted They were. And I just remember, quitting I was done

Scott Benner 25:03
just didn't matter. Like, no matter what insulin it was, or how much or how diluted you were having the same reaction at every spot. Yeah. Wow, I'm so sorry. How long ago was that?

Morgan 25:15
Um, two years ago or

Scott Benner 25:19
eight years after this started? Yeah. Well, Morgan, you've got a hell of a college essay. And you, I'll tell you, you're gonna, you're gonna get accepted anywhere you are anywhere you want to go. That's really, it's crazy. So. Okay, so you're seeing a doctor in Dallas, and she hears Sasha on my podcast, and then contacts me and asks me if I can set her up with Sasha. And that all happens. You get a phone call, like an excited phone call from a doctor

Morgan 25:56
or no, like, we go into my appointment, and she's ecstatic. And I have no reason or clue why.

Scott Benner 26:06
Okay, yeah. And she's just like, you're probably like, Listen, lady, this is I hate this place. So why are you? She just told you what, what did she tell you?

Morgan 26:17
Um, that she had listened to your podcast, and gotten in contact with you to get in contact with Sasha. And learned about all this information about what she was going through what they've done and all that stuff.

Scott Benner 26:34
Okay, and were you like,

Morgan 26:38
I was very shocked. Didn't know what to say? Or how to react mainly. Right? I was just surprised to hear that there was someone else having reactions like I was.

Scott Benner 26:50
Yeah. And then did you? Did that make you feel hopeful? Or were you still like, this probably isn't going to work for me.

Morgan 26:57
I was a bit hopeful. Yeah.

Scott Benner 27:00
So So Sasha was doing? Gosh, she was doing that whole, like, getting that insulin from she had like, like a device she had to get from overseas. And it was like a big insurance problem, like this whole thing. Is that what you thought you were going to be doing at that point?

Morgan 27:17
Um, I didn't know what we're going to do. But I knew that there was other opportunities now.

Scott Benner 27:24
Yeah. Okay. I gotcha. So in the end, you're using so I guess, your your Basal insulin, or use your your you still you're still using a Basal insulin? Yes. And, and are you having an allergic reaction to

Morgan 27:40
it? Um, to this one. Now, right now, I'm using what's called receiver. And it's seeming to work pretty well. And I don't seem to react to it.

Scott Benner 27:50
Excellent. And for your meals, what are you doing? I use a Frezza for instance, you are using an inhaled insulin. Okay. Do you like it?

Morgan 28:01
Um, yeah, I mean, it's not painful. Super easy to do. So

Scott Benner 28:06
as soon as I asked if you liked it, Morgan, I was like, that's the worst question I've ever asked on this podcast ever. Obviously, you like it, but I meant, like, was, I guess what I mean, was, was it a big shift from injecting for meals? Like what was the learning curve? Like,

Morgan 28:22
I'm more so learning of when I need to take it, because it reacts a whole lot quicker. But it also gets out of your system a whole lot quicker. Okay. Are you just adjusting to that is?

Scott Benner 28:39
Yeah, well, what about the process of like, how do you I've never had anybody really explained it to me before. I don't think like he just kind of isn't like an inhaler. Like you see people use

Morgan 28:50
Yeah, it's practically just a little inhaler. It comes in set capsules of units. So there's 12 unit, eight unit and four unit. And based on how much you're eating, you'll put in one of the units and then you'll just inhale like you would for asthma,

Scott Benner 29:09
right? Are you experiencing much more stability? I mean, I would imagine you are like a you have more stable blood sugars now? Um, yeah.

Morgan 29:18
For my blood sugars which like always around in like three hundreds and up but from since starting this my blood sugar's normally are a lot lower than that. So

Scott Benner 29:32
can you tell me if you you don't have to share if you don't want to, but like, what was your a one see a year ago and what what is it now?

Morgan 29:40
A year ago, it was like 13. And our latest appointment was like 9.1 or something like that. Wow.

Scott Benner 29:50
You're kind of just learning how to have diabetes, aren't you? Yeah. It just It occurred to me like this whole thing has been it It stopped the process that everybody else goes through of, of, you know, getting over the sadness and learning how to use insulin and you know, that kind of stuff like Pre-Bolus in your meals and all the things that you need to learn to have find stability, and Laurie one sees, and you'd never had you were always in a in a firefight, basically, you never got, you never got to the part where you got to sit down and like think about it.

Morgan 30:24
Not really, yeah, that's amazing.

Scott Benner 30:26
Do you feel better that your agency is lower? 100%? Yeah. Jen, do you see a difference in her personality?

Jennifer 30:35
Yes. You know, first of all, with her agencies, she hated hated going to appointments, because every time we'd go, they'd be like, Okay, we got to work on the same one, see, we got to, you know, do better. And it you know, because of that, they would add more insulin, more insulin. And her ratio used to be where she would get one unit for every three carbs. And, of course, excuse me, her insulin, or her agency just wasn't coming down. She she had, I think, the highest that she had, you know, after diagnosis, her agency was 14. And, you know, it just couldn't have hated that all our work that we were doing was not shown on paper. And all they could see was a onesie 14. You're not doing it here. We

Scott Benner 31:44
no one ever said no one ever said, Hey, there's inflammation here. There's reasons why the insulins not working.

Jennifer 31:50
No, no, no, it wasn't until it wasn't until we, you know, found. Dr. Bonnie McCann Crosby is before that. Nobody, you know, I took dozens of pictures, we'd show them, you know, her injection sites pump site, then it'd be like, Oh, that's bad, okay, but they didn't ever say anything like, oh, this could affect your body, you know, you know, absorbing the insulin. And she'd go, like, at least once a year, she'd be in DKA and had to go to the hospital. And it'd be like, You got to work on your emergency, you got to do more insulin. And it wasn't until we were in the hospital for DKA. And Dr. McCann was the attending physician, and she came in. And of course, I'm like, these are the pictures. This is what's going on. This is you know, and she was one that was okay. Okay. And she had left and Morgan's. Like, I like her. And I was like, Okay, we'll go to her. So we switched over to Dr. McCann. And she was the one that actually looked at these sites. She took pictures she, you know, was genuinely interested in helping us find an answer. And so when we having her a Wednesday be at 9.1 we're ecstatic and I do see a difference in her person every

Dwayne 33:33
time we would go to a doctor or she was in the hospital, you know, they have rotations for rotating shifts and everything we just have any doctor that we were in the room when they came in, say, Oh, by the way, can you look at this, you know, maybe you have a wound care specialist allergist come by take a look at this and try to tell us what's going on here.

Scott Benner 33:50
Yeah, just hoping if you sent it to enough people, someone would recognize it. Right?

Dwayne 33:54
Yeah, someone would come in and go right away. Oh, yeah. It's because of this. It's a little

Scott Benner 33:59
demoralizing that it never happened, isn't it? You know, it's just it's crazy. That Well, I mean, it's rare and all but somebody should have been able to make the leap. You know what I mean?

Dwayne 34:13
And the last time that she was in is when we started for SEMA she tried Lantus lever mirror basil guard and then finally the in the hospital they put her on recibo we're like okay, this one works.

Scott Benner 34:27
So that one so why would imagine just getting on on a Basal insulin that wasn't causing you a problem probably started to bring her a onesie down and and create some stability. You were a CGM Morgan. Yeah, I do. Actually, is that like, before? This was that CGM just basically like depression on a screen for you.

Morgan 34:49
Um, yeah, I wouldn't like looking at it at all. constant reminder that my blood sugar was never worked supposed to be

Scott Benner 34:58
told me if Even though I mean, it's obvious to everybody, and I'm assuming to you as well. And you've said already that this is not your fault, right, but it doesn't stop it from feeling like that, does it?

Morgan 35:11
No, not at all. Okay.

Scott Benner 35:16
You actually, so how long have you been using the is it by the way? I'm sorry? Is it a Frezza? Or is that how they say it? Freeze? Okay, how long have you been using our

Morgan 35:26
Frezza? Um, it will be a year in September

Scott Benner 35:29
year in September. So now you can look at your CGM and start making more thoughtful decisions about using insulin. Yeah, yeah. And a nine. Let me ask you a quick. Do you mind if we talk about management for a second? Do you guys should? Yeah, Jen, you don't actually listen to this podcast, right? No, I do. Okay. All right. So let me ask you a couple of questions about your basil. How much do you take a day?

Morgan 35:55
Um, I take 32 units in the morning and then 56 At night

Scott Benner 36:01
of Joseba. Wow. So you are still pretty? Is that a resistance to the insulin? Have they ever checked you for insulin resistance?

Morgan 36:13
I'm not sure. No,

Scott Benner 36:16
they haven't, they haven't. So 30 to 56. Really. So eight onto I'm I'm mapping over here, which is not my strong suit. Sorry.

Dwayne 36:28
So we just went through around of having her text me whenever she did a Frezza how many units and I would put in the text messages and the time and date. And I built a spreadsheet on that and sent it to document cans office, they looked at her Dexcom stuff from their size, so they can see where she was at, at that time and date and make some adjustments based off of that. Yeah.

Scott Benner 36:55
Hey, overnight. Morgan, do you? Do you sit stable somewhere? Does your blood sugar sit stable? Overnight?

Morgan 37:05
Sometimes

Unknown Speaker 37:07
Do you this morning,

Morgan 37:10
this morning.

Scott Benner 37:12
So the way I talked about using insulin here and basil still Basil is that basil is kind of the most important part, it's the foundation and the building block of your of your management, right. And that away from meals, like you know, so away from meal insulin, which would be a present in your example, and away from active food in your stomach. So once your food is empty, your stomach is empty. If your Basal is doing its job, well, you are stable at the number you mean to be at, which means if you want to be at 100, you should be stable at 100. If you want to be at 90, there's an amount of basil that should hold you stable at 9120, etc. And so it's just very interesting to me. I mean, that's I don't think of insulin as a lot of insulin or a little bit of insulin I think of insulin is you use the amount you need. But performer perspective. I'll just do it. My daughter I think weighs like 135 pounds right now. And she's eight, eight teen, and she gets about a unit of basil through a pump an hour. So she's using about 24 units of basil a day. And it's an hour away from, you know, away from meals and active insulin. Her blood sugar sits pretty stable between 90 and 110. But yours isn't doing that. Is that right? No. So I would listen. I'm not a doctor. I'm actually maybe the farthest thing from one. But I would I would wonder if there isn't. If something's not happening, where you're, you're, you're seeing some resistance to the Joseba Yeah, and I don't know, I don't know what they would do about it, obviously. Because I wouldn't know if it's inflammation from you know, from the other stuff that we've been talking about. Or if you actually have I don't know, like, I mean, I know you're definitely type one. I'm not saying that but I wonder if you have insulin resistance on top of it or what's your diet like for the course of the day?

Morgan 39:13
I don't normally eat breakfast right now, um, lunch? Normally it kind of varies not very much than either and then dinner it's kind of a lot more

Scott Benner 39:30
Yeah, but nothing like you're not eating like like I don't know you're not having potatoes with rice and a cheeseburger like like you know like you're not taking in like like a like a ton of carbs a day. No no okay, but super interesting. Wow, okay. He caught me by surprise when you said when you gave me this receiver number it caught me by surprise. It's not that not bad. You understand what I mean? Like it just Yeah, it was more it was just more than I expect you to say. I think maybe Are you embody in conversations about this?

Morgan 40:07
Yeah. We're constantly going back and forth, or emails changing and tweaking intake for it and stuff.

Scott Benner 40:15
So let me ask you a question. If your blood sugar was sitting at like, let's just say 200. Right? And you haven't eaten in a couple of hours, you're just looking at a higher blood sugar. If you take the A Frieza a Frezza. Oh my God, why can I say it? If, if you do that, and say you drive that 200? Down to 100? Right? You correct that number? Yeah. Does it float back up again? Or does it stay down there?

Morgan 40:40
Um, normally floats back up.

Scott Benner 40:42
Yeah, that's basil. That so that's, that's, that's a weakness in the basil. Yeah, that's interesting. I don't know. I'm sorry. I don't obviously know how you're gonna get that accomplished and worked on but that I think that's your goal. I think if you figure that piece out, I think that nine a one C turns into a six a one say? Yeah, you know, oh, are you excited that that might happen?

Morgan 41:06
Um, yeah. We're always excited when it gets down.

Scott Benner 41:11
This is such a, this is a such a, an amazingly uncommonly happy story at the end. I mean, it took forever for you to get to it. But I mean, you really were in a position where you didn't think this was going to work out. And it just did. Do you ever have sadness that it took, like that, that a freeze have existed before this? And you didn't know?

Morgan 41:34
Occasionally? Yeah, it's hard. Not this gets you down thinking how many years you've dealt with this? And it could have been fixed. You're known?

Scott Benner 41:43
No, I hear you.

Dwayne 41:45
is expensive. It's, you know, FDA approved for 18 years of age and higher. So the manufacturer card because the doctor really prescribing this off label doesn't offer doesn't the savings card doesn't work at the pharmacy for her. So, you know, it's one month supply for her. It's a couple of grand Wow, during the ductable season, so as that's not not going to be for everyone.

Scott Benner 42:11
Right? Yeah. Hey, Morgan, hurry up and get to be 18. Yeah, did you ever try contacting the company directly?

Dwayne 42:22
And tell I know Dr. McCann contacted them talk to I think their medical director and stuff and because she was under 18. She wanted to talk with him about any risks associated with it but haven't talked with. We haven't reached out to them and talk to him about getting any assistance yet.

Scott Benner 42:41
Well, Morgan, I would think you would be a perfect candidate to be a sponsor of of that insulin. For sure. Your your your story is a is. I mean, your story is that that insulin was your only saving grace. Yeah, you know, like that one simple thing. You know, that company almost stopped making it a few years ago. Isn't that crazy? Like they had not imagined? Yeah, wow. Oh, I just thought of that. Give me chills. Okay. All right. So, okay, more than other questions. What do you enjoy doing? What do you think about going to college for that kind of stuff.

Morgan 43:17
Um, I like working with kids. That's what I do. Mainly a lot. I work at a daycare, actually, and work with preschoolers at school for one of my classes. I'm really good at math. And I'm dance to that and probably will go into mathematics for college.

Scott Benner 43:36
Do you think you'll do education? Or do you think you'll go? Possibly? You don't want to be a math teacher? Is that what you're thinking?

Morgan 43:45
It depends on the grade.

Scott Benner 43:49
What how, what age of child do you imagine would be the best to teach math though?

Morgan 43:56
Um, probably third grade. Yeah, cuz that's when they're learning multiplication. And it's still like it's honest.

Scott Benner 44:04
Yeah, it's a good age for kids. So they're kind of I don't know like you don't realize it till you see it but they're like they're they have enough like common sense that not be complete lunatics and they haven't been hit with all those hormones yet, so they're kind of nice. Yeah, right. Jen. Remember when the kids were nice? Well, this is amazing. Is there anything I'm not asking you that I should be like if I miss something about this story?

Morgan 44:31
Oh, not put a No I did. Okay.

Scott Benner 44:35
Jen, how about you? Can I Can I ask a year after this happened now? Is there been a an increase in your in your mental health like has this been a relief? That's hard to put into words? Yeah. Yeah,

Morgan 44:51
definitely. Definitely have a whole lot more motivation to do things. Before you. It was hard. Hard to do things because they felt like there wasn't a point because at some point, you know that your body is just gonna give out. But now with having more energy and my body actually accepting the insulin, I feel like I'm able to do a whole lot more.

Scott Benner 45:16
Yeah, Jim was there ever in your head that this high a one C was going to, like, hurt her and other ways, at some point. Excuse me.

Jennifer 45:28
So, you know, it just frustrating that you kept seeing it going up. And but, you know, she'd go into DKA. And, and every time that she was in DKA, you know, she was responsive, she wasn't feeling good. She went in, you know, but last year was, was the scariest. And, you know, seeing your child lay on the floor unresponsive and having the paramedics come in to get her and having to do a CT scan to make sure that her brain is okay. And going into the hospital room. And she is completely out of it does not know where she's at, and is trying to take off her, you know, her IV 's and stuff because she's wanting to get out of bed. And it just is, you know, a moment that I will never forget. And hopefully we'll never have to go through again,

Scott Benner 46:41
doesn't sound like you're going to have to, and it's good.

Dwayne 46:45
And in the last year, you know, when she started at Frezza. She went into clinic, we have the allergies there in Dr. McCain's office as well. They get a chest X ray just so they have a baseline in case of presence starts having any impact in their lungs. We go to Texas Children's Hospital, which is great as five minutes up the road. She's seen a cardiologist and kidney doctor just get a baseline on some of her systems to make sure that you know, diabetes doesn't start to impact those.

Scott Benner 47:22
Yeah, it's really interesting actually turn the way you answered my question. Because I and I'm not trust me, I'm not being critical. I was trying to lead you into thinking about long term complications about diabetes, but you're so mired down in this fight, I think that you can, you don't have the bandwidth to look deeper than what's happening right in this moment. And and that became really evident when you were answering the question, I thought, wow, like, there's this poor family, their situation is so immediate and constant, you guys, you don't have the luxury of thinking a month away. And, and now you do all of a sudden, is that, that that that must be a pretty nice change, I would imagine

Jennifer 48:06
that it is a nice change. And also like, so I'm in the middle of getting my master's program, or getting my master's in social work. And, you know, just this last semester, I had some amazing things, you know, even happened just recently because I was looking for research, and came across an article about a boy who was allergic to insulin. And I reached out to the author and asked him to, you know, forward the email on to the mom in hopes that she would contact me. And she did. And they they have a Facebook group is called insulin allergy and hypersensitivity awareness. And in there, there is a group of seven moms, all with kids who have allergic reactions to insulin. And it was just another thing of Oh, my goodness, okay. She's not alone. She's not alone.

Scott Benner 49:25
Right? Whether it's, I'm sorry, whether it's seven people or 7000 people, it's such a big deal to know you're not by yourself.

Jennifer 49:33
Right? Yeah. And that's what I kept telling them. I'm like, Oh my gosh, we're not alone. We're not alone. You know, you wouldn't wish it on anybody. But I am so thankful that we have now come into a community that completely understand. And so you know, that is one of my main goals with getting my master's degree is I just want to be able to help Morgan you know, the best way I can. But then to be able to help others who, you know, come into this life of feeling alone.

Dwayne 50:16
Yeah, I The reactions are the same across the board. I mean, Sasha, who was on your other podcast, she said that I believe that the insulin was eating away at the tissue of her skin Morgan gets bruised and redness and pain. Another one Jen was telling me about from this new Facebook group that she found was as like a BS thing where it gets raised and read and painful. So these reactions are carbon copy, right? You need to these fake these patients, these kids yeah,

Scott Benner 50:48
it's insane. Like Jen have those other people tried a Frezza.

Jennifer 50:54
So other ones they have not. I know that one of the patients. She was, you know, whenever she tried a Piedra, she would stop breathing. And so they have not tried a Frezza. You know, so and I think that they're all younger patients. They are now all younger than more than the oldest one turns 18 in March. So Morgan is now the oldest of this group. And so, you know, with FDA, you know, not having a friend approved for under 18. I don't think any of them have tried. I

Scott Benner 51:37
say well, okay. Hey, Morgan, are you do you know, Sasha? zyk? You guys hook up online and meet?

Morgan 51:43
Um, no, not personally.

Scott Benner 51:47
So, listen, as we wrap up here, I just want to tell you more than I know, my name is not great, Scott. It's kind of like it's not a great name. I've lived with it my whole life. But I do feel like if you have a baby ever one day, like I should get some fairly strong consideration for baby names. Do not think big. But I wanted to, I wanted to seriously tell you just kind of like to put some perspective in this for you. You're almost 18. And eight years ago, when you were 10. I started this podcast. But back in 2007, I started writing a blog a year after my daughter was diagnosed. I wrote that blog for years, I eventually started a podcast. And my idea was much like what your mom is talking about with with what she's working on, as I just really wanted to help people. And at some point, it became very obvious that I really understood how to use insulin, and that my daughter's outcomes were very repeatable, and that I could explain it to other people, and then they could have those outcomes. And then the podcast sort of just grew from there. Like, I'm just sitting in an extra room in my house right now. And, and I made a thing. I don't know, in 2007, that turned into a different thing in 2015, that in 2021, led you to find somebody who helped you with your thing, like it's, it's kind of magical and almost hard to believe, you know what I mean? Like, it's, it's crazy. What year were you diagnosed?

Morgan 53:20
Um, 2012 2012

Scott Benner 53:23
Wow. So six years after my daughter was diagnosed, you got diabetes. And I started a blog because I was trying to raise money for the JDRF. And I could I was having no trouble raise. I was having no luck raising money. So I started writing to people, and in like, this kind of email thing. And then I realized that was bothering them. And I found Morgan, this is gonna sound particularly odd to you because you're young. But I found a program that let me put my words on the internet and make a make a blog, which was not a thing back in 2007. Really? And all these years later, you don't have sores on your body anymore. is very cool. I don't know. I'm very excited. I'm I'm proud of you. And if I'm being honest, Morgan, I'm a tiny bit proud of myself right now. And I'm looking for just even if you buy a dog, and you name it, Scott, I think that would be appropriate.

Morgan 54:17
Okay, totally. I got you. Thank you audit. My pets. Yeah, you

Scott Benner 54:21
know what I'm saying? Like nothing big and you take a picture of it, you send it to me go look at Scott. Even if it's ugly, it's fine with me. I don't care. Really. You guys are terrific. I really can't thank you enough for taking the time to do this. Especially coming up on a holiday weekend. But your story is amazing. I do want to just make sure one more time. Like I didn't miss anything, right? No, you feel good about this. Yeah, I feel really great about I'm super excited for you, Morgan. I can't. I mean, as you're talking, as all of you are talking, I am sitting here thinking like this poor girl's life must have been drudgery. Like just wake up have every morning and just drag your ass through another bad day. And now I just, I just feel like you, the last year of your life has probably felt like, like heavenly, you know, you have a lot of perspective for a person your age, it's gonna serve you well as you as you become an adult. Do you ever feel like that around the other kids? Do you ever look at them and think I know more about the world than they do?

Morgan 55:25
Um, occasionally, especially my peers, you can just tell if some of them

Scott Benner 55:30
haven't been through anything, right? Yeah. Do you have that feeling? Like there's nothing you can't do?

Morgan 55:37
I'm sometimes

Scott Benner 55:40
may I say something, we don't know each other. But you should feel like that. You've been through a lot more than most people go through in their entire life. And, and you're on the other side of it now. So you have this, you have this perspective, like you know about before, and you know about now and now's better. So, you know, you don't need my advice, but anything's possible. You can just dream it and do it. And it'll happen. You know what I mean? Yeah, that's so cool. All right. Well, thank you guys so much, Jen. I really appreciate you doing this. You sounded so nervous in the beginning. Are you okay? Now, Jim?

Jennifer 56:16
You know, I was nervous. And, you know, it's the whole thing of Oh, my goodness, we're actually getting our story out there. You know, we haven't been able to have, you know, major platform to do that. It's always just been in the moment, whoever doctor is in front of us. Look at this, please help us. You know, so it. Yeah, nervous, but I'm so grateful that we were able to come

Scott Benner 56:46
on. No, I appreciate it very much. I mean, in my mind, Sasha story, reach Morgan Morgan story could reach somebody else. And at the very least, if it can't find another person who's going through what Morgan was going through, I think it should serve very well to let let the other people listening, reset their level of gratitude. You know what I mean? Because this is, because Morgan, you got way more than your fair share of both. So, you know, everybody else, I think, will listen to your story and feel pretty lucky today. And I'm just super happy for your kid. Like, I am so excited that this worked out for you. Congratulations. Seriously, go learn some math and maths. Good. Morgan. That's a good thing. Yeah.

Morgan 57:30
I'm excited for you taking calculus. So, Dwayne, you

Scott Benner 57:34
sound like a good dude. Man. That's a that's a lot of kids over there.

Dwayne 57:39
Yeah. Scott, if you're if you're curious, we did look up a Frezza on YouTube. And the company does have video on there and how it's used and everything else and what the equivalents are between the inhaled and versus the liquid insulin. So, you know, check that out.

Scott Benner 57:56
Yeah, let other people find it and take a look. That's amazing. All right. All right, everybody, thank you so much.

Well, I'd like to thank Morgan and her mom and her dad for coming on the show today and sharing her story. I'd also like to thank our Frezza for existing and help him Morgan out. You guys want to help her, contact me, and I'll put you in touch with her. And if you guys want to buy some ads, I've got a podcast all about diabetes, you should give me a call. Speaking of ads, thanks so much to touched by type one for sponsoring this episode of The Juicebox Podcast touch by type one.org. And of course the Contour Next One blood glucose meter. Go check it out right now at contour next one.com forward slash juicebox links to the sponsors. And all the sponsors are in the show notes of your podcast player, and at juicebox podcast.com. If you're looking for community around your diabetes, look no farther than the Juicebox Podcast type one diabetes Facebook group. It has people with all kinds of the diabetes in there. Don't worry, not just type one, but lotta type two gestational 25,000 members. All in they're talking about something that you'd be interested in getting involved in, checking on or maybe just lurking around. I mean, just be like, see what people are saying about how they adjust their Basal insulin or Bolus for pizza, that kind of stuff. Juicebox Podcast, type one diabetes on Facebook. It's a terrific group. It's a private group. So you have to answer a couple of questions to get in. But after you do that, I think you're gonna like it there. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#694 Dexcom CEO chats from ADA 2022

Kevin Sayer chats about all things Dexcom with Scott.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 694 of the Juicebox Podcast

well this won't happen very often on the podcast but this episode is as close as you may get to being live. Kevin Sayer who is the Dexcom CEO is on today. He is currently in New Orleans at the ADA meeting. Today is June 4, and this episode was just recorded. Please remember, while you're listening that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan or becoming bold with insulin. If you're a US resident who has type one diabetes, or is the caregiver of someone with type one, please head over to t one D exchange.org. Forward slash juicebox. Join the registry. Take the survey, the whole thing takes fewer than 10 minutes. When you fill out that survey finish the survey. Your answers will have helped people living with type one diabetes, and at the same time you're supporting the Juicebox Podcast. If you want to try the diabetes pro tip episodes from the podcasts they begin at episode 210 In your podcast player, where you can find them at diabetes pro tip.com.

This show is sponsored today by the glucagon that my daughter carries G voc hypo Penn Find out more at G voc glucagon.com. Forward slash Juicebox. Podcast is also sponsored today by us med you can get your diabetes supplies easier and in a more convenient way than you're probably doing it right now by going to us med.com forward slash juice box or calling 888-721-1514 Hit that link or call that number and get yourself a free benefits check right now. See if you can't get started with us, Matt. I just like to jump right in. I know that you have things going on and things you'd like to share. I'd like to hear them. And then I have two questions at the end if you don't mind.

Kevin Sayer, Dexcom CEO 2:23
You know what? Fire away? You can ask me anything you want.

Scott Benner 2:26
Really? Do you want to do it? Now? My questions want

Kevin Sayer, Dexcom CEO 2:28
to answer everything you asked. But you can ask me anything you want.

Scott Benner 2:31
So my questions are? I mean, did you try to buy on the pod last week?

Kevin Sayer, Dexcom CEO 2:38
We issued a very public statement on Tuesday, after all the speculation that went on the week before that we're not acquiring or merging with anyone. We're here. We have our next comp plan sensing around the world. And and that's our plan. So okay, that's our answer.

Scott Benner 2:57
That's fine. I just I mean, I woke up one morning, everybody send me messages. What do you think of this? What do you do? I'm like, I don't know. What are you asking me for?

Kevin Sayer, Dexcom CEO 3:05
I got a few emails myself,

Scott Benner 3:07
I would imagine. I guess my other question is with libre three coming out? How do you see the two products? Do you see them as competitors now? Or do you? Because in the past, we've talked about that, that you don't see you didn't see the libre and the Dexcom as competitors. But are they getting closer?

Kevin Sayer, Dexcom CEO 3:26
Well, I think we are competitors. And I think that has really changed over time, particularly as both products have become more reimbursed and more mainstream. We're very comfortable with g7 is the premium product in the CGM category. As time goes on, we'll have an ICG designation upon approval will be integrated with the our partner systems as rapidly as we possibly can. We know our system performs spectacularly and we'll give our patients our customers they continue to experience they've had in the past. You know, the question everybody asked us way back in the day is could you make it smaller? Could you make it smaller? Could you make it smaller, we've reduced 60% of the size. From the G six this thing is a little bigger than a nickel and smaller than a quarter. And it is very, very easy to wear. And the performance of the system will speak for itself. It is incredibly well engineered. The manufacturing processes are very well baked out. You know for us operationally, one of the things about G seven that is different than anything we've done before, as we thought about how to build it before we designed it. This is a fully automated process. We couldn't build it manually if we had to, but this really is a fully automated process going from station to station. To the point where literally if, if there were a problem with the sensor, we can trace it all the way back to to all the manufacturing operations one by one with computer chip not with not with Uh, you know, warranty cards or something like that. So we have built a an incredible product with G seven and will compete with anybody. Again, we will have any ID designation, when we start our product, we'll have a 30 minute warmup not an hour warm up with 12 hours when you can't rely on the data. Okay, with a blood drop. So as far as system performance and features, we're very comfortable where

Scott Benner 5:23
we are, this is going to be a leap, is that a word you would use? A lot is seven, a leap from six?

Kevin Sayer, Dexcom CEO 5:29
Yeah, I think seven is a bigger leap from six than six was from five. Okay. All right. And if your users went from five to six, and I'm telling you seven is a bigger leap than six, you can understand why we're being rather cautious and, and planning as much as we can, because I think this is going to make a huge difference. Okay, lives of our users

Scott Benner 5:50
will, um, I don't want to ask you a bunch of g7 questions that you're telling me, I just wanted to just struck me will, will be covered by Medicaid, Medicare.

Kevin Sayer, Dexcom CEO 6:00
So the way there's a process for all these things got, and once we get approval, we'll go to every one of these agencies, we can and get approval as quickly as we possibly can. And the Medicare CMS process is typically 90 days, it may be longer just because of the government, but 90 days from approval, and then we have to go through all the Medicaid state by state as well. And their approval process varies depending upon where they distribute the product, is it through pharmacies or through DME? Suffice to say we have a great big map as to where we're gonna go and how quickly we're gonna go to get reimbursement for this as fast as we can for for our customers. Okay, so yeah, we're gonna go full on, let's get this thing approved everywhere, as quick as we can, once we get it approved at the FDA. So while

Scott Benner 6:50
we're talking about that, let me ask you, is there a roadmap to and how much are you involved in the idea that one day type twos might be prescribed CGM, as a matter of course, instead of something they have to fight about? Or pay out of pocket? Or Are we anywhere near that?

Kevin Sayer, Dexcom CEO 7:09
No, I love your question. And involved. It's an understatement. I think it is an obsession at this point in time. Every time we put our G six product on it, somebody on a group with type two diabetes in a study, we get incredible results. You saw the mobile trial with respect to Basal insulin, we had the same results with our Basal patients, as we get with the intensive insulin users in the diamond study, it was significant anyone see drops, because people change their lifestyle with proper information. We see the same with all the drugs. And as you look at the diabetes pie in the pie of diabetes costs in the future, there can be nothing more important than giving the health care providers and most of these type to patients see PCPs they're not endocrinologist yet. We're giving their health care providers simple, easy, easily accessible information to help dial in the proper drug for these patients to take and proper therapy for them to be on and enable to enable the lifestyle recommendations that come with that. So I think there's a day when it comes. I'd also tell you since I you know, we're just chatting about I also think that's a different problem than automated insulin delivery. And I think while the technology for measuring glucose the same, I think the patient experience will be much different. The app should be different, the software should be different, the pricing should be different, right? It's again, it's not solving serious a problem. Because that patient doesn't have the high and low, you know, danger zones that somebody like you and your family deal with.

Scott Benner 8:48
Or you're talking when you say you see a improvement for people, you're talking about type twos that don't use insulin seeing him Oh, absolutely. Okay. The reason the reason it got into my head was because very recently, my I have a Facebook group for the podcast, it has grown to over 25,000 people and it's starting to attract. Thank you. It's a wonderful tool for people and I love I love how well it helps them. But it's starting to attract insulin using type twos. And I'm beginning to have them on the podcast because they are having similar outcomes to the type ones who listened to the podcast. Oh, they do. Yeah, it's fascinating, actually. Yeah,

Kevin Sayer, Dexcom CEO 9:25
they do and and their outcomes are greatly enhanced if they could have got CGM earlier in the process as well. Yeah,

Scott Benner 9:34
no, I'm thinking of a couple of people specifically, just how it changed their life. Learning how to use insulin and how having Dexcom makes that so much.

Kevin Sayer, Dexcom CEO 9:44
I was in a I have. I have family up in Utah. And about a year and a half ago to Yeah, but year and half ago, we celebrated my dad's 86th birthday. And I had a cousin there I hadn't seen for a while. was 50 years, but she lived there. Obviously, we're not that close. But she came up to me at the party and she goes, she punched me in the arm. She goes, Hey, I need to talk to you. And here's what about she goes, You know, I have type two diabetes, I'm on insulin, and I got in a study with your sensor. I said, Well, how'd that go? And she said, Well, the study went me wearing one a month because they thought I can learn enough. With one a month, I could figure out how to change things. She goes, need to tell these people, that's a stupid idea. I need this all the time. I need it back. I need it all the time. Because she goes I I could make so many changes and do so much better. With this sensor on with this information, she goes, I have to have this full time. Right. And so that's, you know, and type two intensive insulin years are covered by Medicare, and covered by most of the commercial insurance plans. Now we've we've won a lot of those, those battles. And we have terrific coverage. Now for type two intensive, it's insulin users. You know, it's now our mission to continue down the chain and go to Basal insulin and get that approved and reimbursed for people and ultimately, some type of product offering an experience for those with type two diabetes who aren't on insulin because they can learn a tremendous amount and have a much healthier, longer life. Yeah,

Scott Benner 11:12
that's amazing. I, I somehow Imagine your whiteboard with your roadmap on it goes right off the board onto the wall

Kevin Sayer, Dexcom CEO 11:18
after a race and on a regular basis. That's because it's no i It's an obsession in our company. It really is.

Scott Benner 11:26
I appreciate it very much. All right. So you're down at Ada right now. And what are you there to tell people?

Kevin Sayer, Dexcom CEO 11:33
I am here to listen as much as I am to tell, I enjoy coming here to listen to what everybody perceives and what everybody has to say you learn much about your company and quite frankly, a CEO, I learn a lot about my people. I can do them because I don't I haven't we haven't been to a show in over two years. So I'm going to see people that I haven't met that worked that worked for us for two years. And that will be very fun. And a mess.

Scott Benner 12:02
Kevin, you're frozen

Kevin Sayer, Dexcom CEO 12:04
RG SIX sensor has never performed better. Our you know, our customer service. Our customer satisfaction data, both internal and external has never been higher. Our customer satisfaction data rivals, the biggest blue chip companies in the world. And and so we know we've done a lot of things, right. And we'll continue to do that. And I can occasionally get feedback on the end of things we can do better as well. So that that's why I'm here to hear and I'll meet with several physicians, many people I meet with our partners. I have a smattering of meetings across the board with a very, a great variety of people that affect our company. In the meantime, I spent some time with the folks that work for us too. So that's what I'll do here.

Scott Benner 12:52
That's excellent. I always people always asked me if I go and I'm like, I don't know what I would do there. But you made it sound like something I should do. You know

Kevin Sayer, Dexcom CEO 12:59
what? It's worth coming at least once. The other thing that's really fun is, for example, to walk the hall where the scientific posters are for somebody like us has been in this for so long. The Dexcom publications here are nothing short of remarkable. With respect to our product does. There's a study in Belgium, for example, that's been carried on for several years of patients who had a competitive CGM who switched over to Dexcom. And how much better they did after switching and how that improvement has been sustained. Supporting the true value of real time CGM vs. vs. other technologies. That poster is really fun for us. We've seen there's a lot of pediatric posters because people caring too much about pediatric some of the camps. For example, look, we put everybody in a camp on a sensor. And here's what we learned. All these posters are extremely good reading. And there's been a lot of thought going into them. And then the Scientific Sessions, the presentations, even the ones by the companies, there's a lot to learn from it, because we, obviously are going to put our best foot forward thing like this. And so you'll learn from those two, you'd enjoy going one Sunday, it'll be in your backyard. Again, you can go there.

Scott Benner 14:12
Yeah, I guess a little closer to me. I'll try it out. I just did you just the way he talks about I thought, oh, it's the first time I thought that sounds like something I'd want to do. I just didn't think I had a place at it prior. But it makes sense to me. Well, so are you there when you present? Do you talk about g7? I mean, is that the goal?

Kevin Sayer, Dexcom CEO 14:30
We're going to have a little bit of G seven but right now since g six is the commercially available product, most all the presentations are G six focused, you know we've we've published our g7 study data already. The g7 performance is much better than G six was in a very rigorous clear clinical trial setting. We have some talks about you know about some of the features and things but we're still all in with the technology that we have on the market. So a lot of the presentation Sims will refer to our automated insulin delivery partners as well. You know, Omni pod five is rolling out right now we're very excited about that launch. 10 continues to grow tremendously with with their product and the type zero algorithm that our team developed and licensed to them many years ago. So, you know, those will be a lot of our presentations, where a lot of that is this year, it's

Scott Benner 15:24
interesting. Arden's wearing of the Omnipod five right now, it's just put a lot a few days ago for the first time, so we're getting to know it. And it's been really interesting. So far, it's, it's what I what I took most from it, and I'm kind of excited about g7 to you sounds like g7 is going to be less user intensive, there's going to be less for you to do if that's even possible. But putting on on the pod five, coming off a loop. It just was, you know, it felt like you were just clicking screens, and and then you were there. So it was a that that to me, it was like the biggest you know, what

Kevin Sayer, Dexcom CEO 15:58
we've learned Scout over the years as complex, as long as complex is in the background. And it's great science that gives you a better experience. And that's a good thing complex for the users isn't good, right? And we've worked very hard to make g7 much more simple for somebody who start up and use you know, the half hour warm up. I I've had many people tell me those two hours without CGM data are the worst two hours of their of their weeks. Because you just sit there and you don't know that half hour is a big deal. And in fact it when you put one on it, usually it usually doesn't even take a half hour, it'll show up and say you got 25 or 26 minutes more that simplification and, you know, again, we've we've learned a lot. One other simplification, for example, we we've, if you've gone online with GTX, you've seen a whole bunch of overtype solutions people have invented or you call us and get RT we just put it over tape just gonna be some tape in the box

Scott Benner 17:00
I imagined to with the size and weight difference that's got to help to with just would just stay pinned. Yeah, right. So it how much smaller I know that that's not I mean, listen, I'm not complaining the G six is amazing and g7 is obviously smaller and form factor is there room to make these things smaller still.

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Kevin Sayer, Dexcom CEO 19:12
It's a very good question. And it's something we experiment with a lot when we went down to the g7 size it's 60% Smaller than G six. It's like I said it's smaller than a quarter. It's bigger than a nickel. We consider going smaller than that. But as you get into electronics and radio antennas and and how those things perform, there's a certain amount of size that optimize performance and that's why we settle on the size that we have. Okay, we have designs looking forward to it. Do we want smaller do we want thinner do we want more flexible? So in our advanced engineering group, we look at all sorts of answers for customers in the future. And on top of all that it has to be can can you build it too? Right? You know another interesting thing about G seven is just it It just all the manufacturing processes. It's the plastic the way it's put around the transmitter stuff, very complex for us to do leading to a great outcome. For.

Scott Benner 20:16
Kevin, you froze up there for a second. I'm

Kevin Sayer, Dexcom CEO 20:17
sorry, you say I'm sorry, great

Scott Benner 20:18
outcome. I

Kevin Sayer, Dexcom CEO 20:19
just got a message from my hotel that my internet was unstable. But we've not had a good internet, stay here at our at our hotel. But we'll get that figured out.

Scott Benner 20:31
I'll tell you what, the one thing you can do that I know from doing this so much is that take people who are around you while you're talking and get them off the Wi Fi? Because they pull from the signal. So anyway. Okay. Well, you, you don't have to I just know it works. But I'm sorry, you were saying leading to?

Kevin Sayer, Dexcom CEO 20:51
No, we were talking about size, and how small can you make these things, there also gets to be a size where their dexterity issues putting it on and off, you could almost go too small, I think. So we look at size, we look at features, we look at height versus diameter, because in all reality, the one of the other advantages of g7 is how much thinner it is. As far as not getting caught on things. I think, again, the experience will be and the work factor will be wonderful. But the simplicity of putting it on is literally I've got a box here in front of me. I mean, this is the box, size in my head and it you unscrew a cap at the bottom, put it on your body push, and then you're done. And then you pair it, it's you know, one of our one of our biggest opportunities, and some of you got much better at over the years of G six is explaining the transmitter and the transmitter. As you said, it's not that complicated. Not it's not that hard to use. But I also can't tell you how many people with their first sensor have peeled the transmitter off and thrown it away. Because they don't understand it. They have to use it again. We've eliminated that concern,

Scott Benner 22:02
right? No, I know that happens. I do know that people have the icy don't come online and they're in a panic, we throw out our G six transmitter, we don't know what to do bah bah bah. Now, just I mean, it's disposable, right? Yeah, fully disposable. You got it to 10 days right now.

Kevin Sayer, Dexcom CEO 22:20
We actually have 10 days with the 12 hour grace period. Okay.

Scott Benner 22:23
And do you think? Do you think that expands through software? Or do you think through the life of g7, it stays at 10.

Kevin Sayer, Dexcom CEO 22:30
I think over the life of g7, we're working on getting to 15. The issues with there are three ways we can make the sensor last longer we explore all three, one is the patch. And I'm sure you've had multiple patch postings on your, on your website and patch questions, we test all sorts of materials for patches. And if you make a patch, not sticky enough, that obviously falls off. But you also don't don't get allergic reaction. If you make it too sick, sticky, it may not fall off, but it may stay on too long. And so we've we evaluate patches for all those things, we believe we have a very good patch. In our current g7, we've got two or three more we're looking at to make patches last longer. The second piece of that is just sensor life in general, you know, when you put a sensor and you do create a wound, and eventually there's a wind response, and sometimes antibodies go around that. And that's why sometimes sensors failure, so fail. So what can we do to manage that. The third thing that we focus on is the algorithm and the data and the processing of the signal. So we have programs going in all three areas to make it last longer overriding all that, though, is again, the customer experience. Would you rather have something that last 15 days that 25% of them don't make it to the end, but it lasts 15 days? Or would you rather have something the last 10 days where 90 plus percent of them make it all the way through, we've learned that the the least satisfactory experience for one of our users is to have their last sensor of the month fail. And they haven't been able to come to the drugstore and get more because it failed early. So we really take that useful life seriously. To make that customer experience as best as we can. That's why we stayed at 10. Right now, that makes a lot of sense. But we look at ways to make it last longer.

Scott Benner 24:22
I'm going to ask you a question, if you don't mind about you come up with a product and then you have to test it on people and then I assume you you know, you have to get involved with the FDA. Show them what you've learned. What's the what's the life of that process? How long does that take from the day you start? No. Yeah,

Kevin Sayer, Dexcom CEO 24:41
we started g7 in 2017. Wow. Okay. And so that development process took a long time. Everything we do we do differently with G seven. We as a company and I don't think this is appreciated enough by the outside world. So I guess I'll stand on my soapbox for a minute. When we went to G six We had to write off all the equipment to produce G five, because we changed our manufacturing process entirely. We launched G six and G, we lost G six in 2018. And we were already developing another product that we knew would cause us to have to build all new manufacturing equipment and do it different. And we've made that investment, or we're making it, we, you know, all G six is manufactured on automated lines, we have some manual lines, if we need to up capacity, that equipment won't be applicable for g7. So we'll be phasing it out. And we'll be phasing it out. Because we have geographies where we still use G six, we have an organized, thoughtful manner for that. But we're making $100 billion over the next three years to get automated factories up and running for G seven G six processes, and getting ready to take these sensors everywhere. Our users will experience great satisfaction with this because we we've invested in taking that much time. So the FDA process and getting ready, I A doesn't take the whole five years. But the whole the time frame I'm telling you about for g7. So that's what it takes. And the other thing that has really changed from when I started in this business years ago, is that commitment to scale and spending for manufacturing. Before all these things were put together manually in our plant in San Diego, to get in this this business in to really serve customers is going to require a lot of money. And and I think we've been very thoughtful in doing that. But our commitment to the industry and to our customers is shown by our our investments.

Scott Benner 26:42
Yeah, no, I agree. Is does that mean that right now you're working on something that we'll see three, four or five years from now? Always, I guess that's the plan, right?

Kevin Sayer, Dexcom CEO 26:54
It's just and I think, as I look at our research efforts, I can break them down into really three buckets. One of them is software experiences, not only for our current users, but for also for our partners, and our partners, potentially, in the type two space or other entities, I think you're gonna see a number of software experiences from Dexcom over the years. And we just launched a version of G six in some international markets called Dexcom. One that is literally a G six, but a much less rigorous experience with respect to connectivity, being able to connect other devices, there's no share. And we are creating a two tiered product structure in these markets, where that is how it's reimbursed. So you'll see us create software experiences. So that's the first area the second is, you know, is sensors and modifying and enhancing the current product through better performance, new electronics, qualifying new suppliers, things of that nature. And then we have a third area where we go well, what is the future? Again, the wearable the what does it need to look like? How much smaller does it have to get how much smaller could you make it and still have the electronics performance that we need, but also future sensing capabilities, making it last longer things like that over in another group. So we spend our research dollars on all those things.

Scott Benner 28:17
It's funny, you said earlier about not making something so small that you can't handle it. And it popped into my head that I do an ad for a meter. That's a tiny meter that I like. And part of what I say while I'm talking about it is it's small, but not too small. And it never had never occurred to me the other way about about the sensor, but it does make sense, right? Your pupils dexterity comes into play at some point being able to handle the device, put it on, take it off. I don't know why that just popped back into my head. But that was a it was really something that I don't know, it just struck me at the time. So I mean, I always have to ask because if I don't, I'll get yelled at. But g7 will arrive just say the date out loud. I'm just kidding.

Kevin Sayer, Dexcom CEO 28:58
One of our policies is to never give a date. We'll update every bit and our progress. It has been submitted to the FDA, we're coming forth with the FDA right now. It's been a rigorous and a good process. We don't see anything that will prevent a launch of this product. And we're going to be as ready as we can I don't have a date for you now. We'll talk more about it publicly on our earnings call. But for today, G six is still the best option for everybody available.

Scott Benner 29:25
Do you produce products ahead of the the FDA saying go to make backlog or? Yeah, we do. Yeah.

Kevin Sayer, Dexcom CEO 29:33
But we're very careful about not producing too much in case we have to, for example, change some wording in the User Guide or something along those lines. So it's a it's it's definitely a balancing act. Yeah. For us. g7 is now approved for Europe. So we're building product for our launches in geographies in Europe over the second half of the year. Excuse me, and the fact is we build a number of this stuff as practice runs and And oftentimes throw away just to make sure everything is working build and test because we need to be ready to go. That's really

Scott Benner 30:07
amazing. Well, I appreciate all your efforts. Something happened recently where your your product was really, really important in my family's life so I appreciate it very much. Well,

Kevin Sayer, Dexcom CEO 30:19
Scott, we appreciate your commitment to Thanks for having me on the show again

Scott Benner 30:22
course enjoy the idea. Take care of by

a huge thank you to one of today's sponsors, GE voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com forward slash juicebox you spell that GVOKEGLUC AG o n.com. Forward slash Juicebox. Podcast also going to thank us med for sponsoring this episode, and remind you to go to us med.com Ford slash juice box or call 888-721-1514. To get your free benefits check. Start getting your diabetes supplies in a way that doesn't make you want to run your head through a brick wall. There that's the tagline. If you're enjoying the Juicebox Podcast, please subscribe and follow in a podcast app. There are plenty of them. They are free. Apple podcast comes to mind Spotify, Amazon music, there's a whole bunch of them. If you don't know how to get to one, there's a whole bunch of them on my website juicebox podcast.com. I'd also like to suggest that you check out the private Facebook group for the podcast that was mentioned earlier. 25,000 members strong people just like you listening, learning, sharing commiserating hugging, it's everything you need it to be Juicebox Podcast, type one diabetes on Facebook, it's a private group, you'll have to answer a couple of questions to get in. But then you know you're around friends after that. I did mention the diabetes protests earlier. You can find them at juicebox podcast.com, or diabetes pro tip.com. And there's a ton of different series within the podcast not just the Pro Tip series. The easiest way to see them is probably to go to the Facebook page, the private one and go up to the feature tab. And in there there are these beautiful curated lists that show you all kinds of series with inside the podcast. I will go look at them for you right now. If you like Juicebox Podcast type one diabetes, featured tab at the top. So there's a list there about the Pro Tip series. There's a list there for the variable series different variables that impact your life with diabetes Quickstart episodes. What are some of the episodes people enjoy listening to? When they first get going with the podcast like episode 411 2937 There's a list of them there. I feel like I should have said hike after those numbers. Sorry, how we eat series. Some people eat vegan carnivore plant based gluten free low carb Bernstein FODMAP keto flexitarian intermittent fasting, we have episodes about all of that. There's the list of the most popular requested shows like talking about it. He's have allergies, Dexcom calibration practices. What do you have in your go bag? Advice for type one parents from type one adults? How could you help a newly diagnosed friend switching to an insulin pump? How do you split your long acting Basal insulin bolusing, insulin for fat, and all different kinds of stuff. These lists are right there in the feature tab. There's also a big series called ask Scott and Jenny. Jenny is a three decade long type one diabetic who's also a CTE. And she comes on the show all the time. So there's ask Scott and Jenny episodes where listeners send in questions and Jenny and I, we talk about them a whole list of how to Bolus for fat and protein. Oh, great couple of series about being pregnant with type one diabetes, defining thyroid so there's also a defining diabetes series. These are the terms that you'll use with diabetes, but there's also defining thyroid talking about things like hypo hyperthyroidism, Hashimotos pituitary glands, TSH, t 43, autoimmune goiter thyroiditis Graves disease, things you don't think about. But you might need to know about, about your thyroid care.

There's also a ton of episodes about algorithm pumping, looping on the pod five, control IQ and there are more and more of those coming every day. I really think you should subscribe. Go into your podcast app right now and hit subscribe or follow. That way you'll get all the new episodes right there for you. You get to pick through them and see what interests you. And don't forget the after dark series, drinking weed smoking, trauma and addiction. People having sex with type one diabetes, depression and self harm divorce and co parenting bipolar diet bulimia, heroin addiction. psychedelics. Oh my gosh, there's stuff here about I being the child of divorce, complications with diabetes, other eating disorders, other life struggles having diabetes for 50 years. There's one person on here talking about having ADHD, cocaine abuse. And very recently, a mother came on to talk about her son who she lost to addiction. These are all to do with type one diabetes and all available in the Juicebox Podcast, and the newest series. I love this new series. It's called type two stories. People with type two diabetes, come on to talk about their diabetes. Absolutely enlightening. Don't Don't miss it. I said that like there was no more but there's a mental wellness, a ton of mental wellness stuff with licensed marriage and family therapist, Erica Forsythe. She's also had type one diabetes for 30 years. We talked about all kinds of stuff about type one. Alright, I think that's all the series. I'm clicking through. It is that's it anyway, so you might see there is a ton of content inside of the Juicebox Podcast. It's all there for you. It's all free. Take it as you want. Use it as you will. I hope you enjoy it. I'll be back very soon with another episode of The Juicebox Podcast Subscribe and follow telephoned about the show