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- [00:00]
A
Hello friends. Welcome to the Juice Box Podcast. Happy holidays to everyone juggling carbs, cookies and the chaos of this season.
- [00:16]
B
My name is Kelly. I live in Illinois. I've been a type 1 diabetic for 38 years. I recently had what is called a porcine islet transplant. I am about a month out now joined a clinical trial. I'm excited to talk about that today.
- [00:34]
A
The podcast contains so many different series and collections of information that it can be difficult to find them in your traditional podcast app sometimes. That's why they're also collected@juiceboxpodcast.com Go up to the top, there's a menu right there. Click on Series Defining Diabetes, Bold Beginnings, the Pro Tip Series Small Sips, Omnipod 5, Ask Scott and Jenny Mental Wellness, Fat and Protein Defining Thyroid After Dark, Diabetes Variables, Grand Rounds, Cold win, pregnancy, type 2 diabetes, GLP meds, the math Behind Diabetes, Diabetes Myths, and so much more. You have to go check it out. It's all there waiting for you and it's absolutely free. Juiceboxpodcast.com While you're listening, please remember that nothing you hear on the Juice Box 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. Today's podcast is sponsored by Skingrip. Your devices, they can fall off, but with skin grip they stay secure for the full life of the device. Juice Box podcast listeners will save 20% on their first order at my link skingrip.com juicebox if you want a durable skin safe adhesive that lasts, you want Skingrip. Today's episode is also sponsored by Omnipod. Check out the Omnipod 5 now with my link omnipod.com juicebox you may be eligible for a free starter kit. A free Omnipod 5 starter kit at my link. Go check it out. Omnipod.com Juicebox terms and conditions apply. Full terms and conditions can be found@ omnipod.com juicebox the podcast is also sponsored today by usmed usmed.com juicebox or call 888-721-1514. You can get your diabetes testing supplies the same way we do from usmed.
- [02:37]
B
My name is Kelly. I live in Illinois. I've been a type 1 diabetic for 38 years. I recently had what is called a porcine eyelet transplant. I am about a month out now joined a clinical trial. I'm excited to talk about that today.
- [02:54]
A
Awesome. Kelly from Illinois, you're kellinoi now we're 30. Did you say 38 years?
- [03:02]
B
38 years.
- [03:04]
A
How old are you now?
- [03:05]
B
45.
- [03:07]
A
Wow.
- [03:07]
B
Diagnosed just before. Just before I started third grade.
- [03:11]
A
Okay. All right. You remember much about it?
- [03:16]
B
So we were living in South Florida at the time. I remember being in second grade and just having all the classic symptoms. Right. Frequent urination, just excessive thirst was probably the one I remember the most. My parents started to notice that I was losing weight, and at one point, I even was starting to lose some hair. So they took me to the doctor, and they, of course, did the blood. Did a blood test, and it was off the charts. I don't think that the machine could have, you know, the glucose monitor could read it back then. So the next move was to the hospital. So I missed the beginning of third grade, I think, by two weeks. But, yeah, I remember that day very vividly. This is obviously very traumatizing, being a kid.
- [03:56]
A
Yeah.
- [03:57]
B
And then having to learn how to take shots and all of that. My parents, thank God for them, I mean, were amazing and really did a lot of this in the beginning. I don't even know that I actually took my own insulin syringe for probably a year or so after diagnosis. My parents were just very heavily involved, so. But, yeah, I'm glad that those days were over and the lack of technologies and we had nothing back then compared to now. I don't know how we made it through the 80s and the 90s, to be honest. It's very difficult. Very difficult time to be a diabetic, I think.
- [04:28]
A
Yeah. What do you think the biggest change is? Not just like, don't tell me it's a CGM or it's this. What is it for you personally, what has changed for the better for people with type 1 diabetes?
- [04:40]
B
Well, you know, when I think about how we manage diabetes in the 80s and 90s, it just seems like a. It's. I mean, in retrospect, it seems like it was a disaster back then. I mean, your. Your parents were handed a sliding scale to figure out, you know, how much insulin you're going to need for carbs and all of this. And I think we took two shots a day. Back then, there was no testing of blood sugar through, like, maybe as aggressively as we should have throughout the day. I think we just did it before and after meals, and that was it. So it's the not. Not knowing. Right. What your blood sugar is like. We can just look down, look down at our CGM and see that, you know, right away. I just sometimes think it's amazing that we live through all of that because we just didn't have access to what we have access to now.
- [05:24]
A
Yeah.
- [05:25]
B
It almost seems like on some level, what really wasn't really the safest back then, you know, but what you had.
- [05:31]
A
It'S what you had though, right? I mean, it's not like all we had.
- [05:34]
B
Yeah.
- [05:35]
A
And so health wise, when you think of yourself at 20, did you think of yourself as unhealthy?
- [05:43]
B
I don't think I ever thought of myself as unhealthy. But I, even in my 20s, think that my level of care probably wasn't what it is now, because being a college student, I don't think I was as focused. I mean, I remember going to bed thinking, oh, I really should test my blood sugar, and I wouldn't. And so we didn't have CGMs when I was in college either. So, you know, there, there were definitely some moments that gave me some wake up calls back then. I can remember one time waking up and somehow I found myself in the basement of our home. But it was like I woke up as if I had just come out of a severe low glucose. It was like, why am I sitting here? What am I doing? And so it was moments like that that really forced me to take better care of myself. I'd say probably around the age of 25, I just got really serious about, okay, I need to go on an insulin pump, but I need to, I need to make sure that I'm really taking care of myself. I don't want to wake up on the basement floor, you know, not really knowing where I am, what I'm doing. And somehow I miraculously came out of that on my own.
- [06:48]
A
What do you think happened at 25?
- [06:51]
B
I can only imagine it was another severe low. Like, I never had to go to the hospital for a low. There was one time where my father did drive me to the hospital, but I woke up kind of out of that state in the car. And I remember thinking, what are we doing? Where are we going? I'm in my pajamas. I had a little glass of juice in my lap. And my father says, you're not acting right. I have to take you to the hospital. I said, no, I'm fine. Turn around. I made him turn around. But I think it was one of those moments, and maybe it was that moment that just made me realize, like, you've got to stop this. Like, you've got to figure out how to take better care of yourself or, you know, you're not going to live with this, you know, And I don't think I was ever. I don't think I ever, like, fully neglected my diabetes. I just think there were moments where I got very lazy with it, and that's what led, you know, to those sort of episodes. So right around, I'd say the age of 25, I got serious and never had any. Any issues like that again.
- [07:43]
A
Yeah. Do you have context for. They say it takes into your mid-20s for your brain to fully form, for you to be, like, you know, kind of a complete person. So you had some impacts that kind of snapped you. Right. And then you got yourself together and never went back. It didn't go backwards on you.
- [08:02]
B
Yeah, exactly.
- [08:03]
A
Awesome. Were you married at that point or dating? Seriously, anything like that?
- [08:06]
B
I mean, I was so. I mean, I graduated college around 22, and I got a job right away. So, no, I didn't actually get married till I was about 33. I have two children, and I had very successful pregnancies despite type one. So I'm very grateful for that.
- [08:24]
A
Nice.
- [08:25]
B
You know, I think just having diabetes for 38 years, you know, it's. Even though I almost don't know life any other way, because I've had this since I was, you know, seven years old, it's still a burden, I feel. I think it's just, you know, you can never, like, take a step away from diabetes. And I think that's what led me down the path of trying to explore what clinical trials are out there. And it really took me moving to Illinois. I mean, I lived in the Northern Virginia area for about 33 years. Never really researched this. I had heard about different things happening, but didn't get really serious about researching until I moved. So when I moved to Illinois last year, I was amazed to discover that there are several research hospitals in the Chicago area, as well as one in Madison, Wisconsin. And all of them had been doing islet transplants for years. I mean, decade plus. And I thought, this is incredible. How come I never knew this? So I contacted all of them and was trying to see if I would be a candidate for clinical trial. So at first, the first one, I would say one of the hospitals, I didn't qualify because the criteria is different for all the studies, obviously. So some you have to have a certain blood type, which I didn't have. Others, you know, there are BMI requirements and things like that. I was able to get in touch with the University of Illinois in Chicago. The first path I tried to go down was the islet cells, where they harvest the cells from a cadaver pancreas that didn't work out because we actually had to go through insurance for that. That particular one wasn't even considered a clinical trial. Like, they've been doing this for years. And so if your insurance covers the procedure, you can, you know, have this done. Fortunately, my, my insurance company told me they don't cover islet cells. And I almost laughed. I was like, oh, of course you won't cover a cure. Like, why would we do that? Because my understanding is you leave the hospital and you're essentially not diabetic anymore. I mean, it works that fast, right? It's. It's incredible. So downside, obviously, to doing the cadaver route is you do have to take immunosuppressant drugs the rest of your life. So there is, you know, there are some pros and cons to be weighed there, of course. So after that kind of fell apart, I waited and I was back in touch with the University of Illinois again and learned that they were going to have another. They were going to actually have a clinical trial opening up in August of this year. And I was able to get in touch with the research team and they said that they thought I might be a good candidate. So we went out and I had all kinds of tests done and they said that I qualified. And so I had my transplant surgery on October 14th. And what made this different was that this particular study, they took islet cells from pigs, so it's porcine islets. This has been effective in primate studies, but we haven't really studied this enough in humans. I'm actually the second person in the United States to do a porcine eyelid, which is pretty remarkable. It has been done in other countries. I think New Zealand was one of the first. It's been done in Argentina, Germany, the list goes on, but it's still being studied. So this is an efficacy and safety study. I got a certain amount of porcine eyelids and the surgeon believed that in a couple of weeks here, I should start to see some changes in insulin requirements. So that's very exciting. Whether this is going to lead to full insulin independence is still unknown. It certainly is a possibility, but we just don't know.
- [12:13]
A
So. Okay, let me ask a couple of questions.
- [12:16]
B
Sure.
- [12:17]
A
Let me start at the beginning here so I can piece my way through it. How long ago did you have the procedure?
- [12:21]
B
On October 14th.
- [12:23]
A
Okay, so that's a month ago?
- [12:24]
B
Yes.
- [12:25]
A
Okay. And they give you. It's pig cells from a pig. Okay.
- [12:32]
B
Yes.
- [12:33]
A
Do you need anti rejection meds for that?
- [12:35]
B
You do not. That's what makes this. Why is that so different? So the cells are encapsulated.
- [12:41]
A
Oh, okay.
- [12:42]
B
Which. You've probably heard of that, right? Yeah, that. That's why.
- [12:45]
A
So it's in. In one of those pouches.
- [12:48]
B
It's actually not in a pouch. So this also fascinated me. That's what I thought we were going to do. I actually thought they'd be in a pouch. They put them in your omentum, which I had to Google. I didn't even know this was a body part that we had. Okay. This is a little like fatty tissue in the upper abdomen area, and it kind of drapes over your intestines like a curtain or an apron.
- [13:08]
A
Okay.
- [13:10]
B
This area is being utilized for eyelet cell. Well, I don't know about cadaver, but certainly for porcine. It's a protected area and rich in blood supply. And it's. It's known to be an area that I guess where these cells can thrive. So that's why they're starting to. To do them in. The momentum.
- [13:31]
A
Huh. Okay. So they put them in there, and it's been a month. Have you. Have you noticed any difference at all? You've probably heard me talk about usmed and how simple it is to reorder with usmed using their email system. But did you know that if you don't see the email and you're set up for this, you have to set it up? They don't just randomly call you. But I'm set up to be called if I don't respond to the email because I don't trust myself 100%. So one time I didn't respond to the email, and the phone rings at the house. It's like, ring. You know how it works. And I picked it up, I was like, hello? And it was just the recording. It was like, us Med doesn't actually sound like that, but you know what I'm saying? It said, hey, you're. I don't remember exactly what it says, but it's basically like, hey, your order's ready. You want us to send it? Push this button if you want us to send it. Or if you'd like to wait. I think it lets you put it off like a couple of weeks or push this button for that. That's pretty much it. I push the button to send it, and a few days later, box right at my door. That's it. Usmed.com juicebox or call 888-721-1514. Get your free benefits checked. Now you. And get started with usmed, Dexcom, Omnipod Tandem Freestyle. They've got all your favorites, even that new eyelet pump. Check them out now@usmed.com juicebox or by calling 888-721-1514. There are links in the show notes of your podcast player and links@juicebox podcast.com to us Med and all of the sponsors. This episode is brought to you by Omnipod. Would you ever buy a car without test driving it first? That's a big risk to take on a pretty large investment. You wouldn't do that, right? So why would you do it? When it comes to choosing an insulin pump, most pumps come with a four year lock in period through the DME channel and you don't even get to try it first. But not Omnipod 5. Omnipod 5 is available exclusively through the pharmacy, which means it doesn't come with a typical four year DME lock in period. Plus you can get started with a free 30 day trial to be sure it's the right choice for you or your family. My daughter has been wearing an Omnipod every day for 17 years. Are you ready to give Omnipod5 a try? Request your free starter kit today at my link omnipod.com Juicebox terms and conditions apply. Eligibility may vary. Full terms and conditions can be found@ omnipod.com juicebox find my link in the show notes of this podcast player or@juiceboxpodcast.com.
- [16:05]
B
Not yet, but they told me that I shouldn't really see any changes for about six weeks.
- [16:11]
A
Six weeks.
- [16:12]
B
And so I, to be honest, I haven't seen anything yet. So I'm just. It's sort of like diabetes as usual. Right. I haven't seen any change just yet.
- [16:21]
A
My gosh. Well, you're the second person, so I was going to say, have you talked to anybody else that's had it done? But there was one other person.
- [16:27]
B
One other person in the U.S. study. Yes. And if you look at the studies that have happened overseas, they're mixed in terms of success rates. Right. So, you know, and each study was slightly different, so the goals of each study are different. But this clearly is an area that is still being, well, you know, studied. We. I don't know that anyone has gone to full insulin independence, but they certainly have had success, you know, in the area of like better control after meals. Right. Better. Like less spikes after eating, things like that.
- [17:02]
A
So have there been any changes? If I yell sui, will you come running? Anything like that? Sorry, that's a. That's a bad pig joke. How long was the procedure? How long was it to recover from it?
- [17:15]
B
This was a very easy surgery. So it was done laparoscopically. They made four tiny incisions, probably a centimeter around my abdomen. They sort of said, imagine like a funnel, right? They're funneling the cells into your momentum. And. And that was it. And I was in the hospital for two days. Recovery was very easy. I didn't need any pain medicine. I may have taken an ibuprofen on, you know, the first day after it was released, but nothing beyond that.
- [17:41]
A
I like that. Just easy. What's the doctor's name?
- [17:45]
B
So the doctor, the transplant surgeon that did my surgery is Dr. De Coco. He was amazing and really the entire research team there is amazing. I still go in once a week for follow up care. So they do a lot of blood work. They're also doing like C peptide tests, right. To see if there's any activity and things like that. So I'll be going to every other week appointments pretty soon. But yeah, I'll be, I'll be followed essentially the rest of my life as part of this study.
- [18:13]
A
I was going to say, what's your responsibility to the study after the.
- [18:17]
B
Yeah, so the visits will slow down a little bit. You know, maybe it'll be once a month for a while and then eventually I think it may be even twice a year, something like that. But yes, I will be closely monitored for the rest of my life.
- [18:30]
A
Okay, can you tell me, have you given thought to. If you wake up six weeks in, eight weeks in, 12 weeks in, there's no change. Do you think you'll be disappointed or do you think you'll have just been happy to help?
- [18:43]
B
You know, of course there'll be like a little disappointment. But I, I went into this knowing that there's a big question mark around whether this is going to work fully. My hope is that maybe this will lead to, you know, more opportunities for other type ones. I mean, certainly in the cell therapy space there's so much being done, it's incredible. I really didn't know until I spent, I mean I spent probably about three or four months just diving into all the hospitals in my area that were doing islet cell transplants and I just couldn't believe how much I didn't know. So there's a lot happening. I met, I also met, I don't know if you've heard of Dr. Oberholzer, he's a Swiss transplant surgeon who's been heavily involved in the university of Illinois in Chicago. He's the one that started the diabetes. I'm sorry, the Chicago Diabetes Project, which you may have heard of.
- [19:33]
A
I have, yeah.
- [19:35]
B
Yeah. He did his first eyelid transplant in 1996, and I've read a lot about him. I've just been so amazed by his work, which has been solely focused on a cure, like finding a cure, developing cures. So this is his whole life's work? Well, he happened to be in Chicago while I was there and came. Just walked into my hospital room the day of surgery and I couldn't believe it. I was like, wow, you're here. I had no idea he was going to be there. So it was wonderful to meet him and talk to him about these procedures and just all of that is being done in the eyelid space. It's really amazing. So I do believe that there will be a cure for us in the near future. I know a lot of people think that's just not. It'll never happen, but these cell based therapies, there's so much happening right now in this space that I think it will be available to most of us in the future.
- [20:24]
A
No, that'd be crazy. Yeah. What, what did you have to do to qualify? Is there anything that would have disqualified you?
- [20:32]
B
Yeah, some. So each study has a, you know, slightly different criteria. This one, you had to meet certain things, and I, I don't recall the entire list, but I know a big one was like hypoglycemia. Like, if you don't feel when you're low, that certainly is a. Is a factor that, that helped me qualify because I, I do think I have lost sensitivity over the years, which is not uncommon when you've had diabetes for a long time. I could be, you know, out doing an activity and maybe I don't recognize this. I don't feel it right right away. I'm waiting, like, I have to wait for the CGM to alert me. So that's certainly not a great thing. There's some other factors, like you have to make. You have to be a certain weight. You know, BMI is a factor in these studies and a couple of other things, but each one, like I said, has slightly different criteria.
- [21:26]
A
Yeah. Okay. All right. What made you want to come on the podcast? Actually, that's interesting because you scheduled this and you don't know what the outcome is going to be yet. So what's your hope in talking to people?
- [21:38]
B
Well, what I was hoping to share is that there's a lot of work being done right now trying to develop a cure for diabetes. It's been, and it's been going on for many, many years. And I just think that there are a lot of type ones like me out there who thought, I'm going to have this forever. You know, yes, there's studies being done, but that's never going to apply to me. It's not something I'm ever going to be able to participate in. And I would encourage type ones to really, especially if you live close to a big city like Chicago or. And I mean, these are being done all over the country. University of Miami does islets. I believe the University of Virginia does islets. So this is happening all over the country. I think even ucla. Just do your research and if it sounds like something you'd be interested in participating in and maybe you'd have, you know, the opportunity for a little bit of a break from diabetes, you know, you'd be surprised. I didn't think that I was going to qualify for any of these. I do feel fortunate that I was able to get into one. And even if it, you know, let's say only works 50% of the expectation, right. Like, maybe I don't have full insulin independence, but even to get kind of that break from, okay, I can eat a meal and I don't have to worry about where am I going to be two hours from now or three hours from now. Right. Like, just having just a little bit of a break from type one would be absolutely amazing for me.
- [22:58]
A
Let's talk about that a little bit. After nearly four decades of type 1 diabetes, like, right. Like what is it about your experience that made you think, I'm just gonna go ask somebody to cut my belly open and stuff some pig cells in here and see if that doesn't help me, you know what I mean?
- [23:14]
B
Like, like what encouraged me to go this route?
- [23:17]
A
Yeah. What's the long term implications that make you think of that? Because there are people out there who've done transplants, right. Like, often they're in poorer health and maybe makes more sense. But even when you tell somebody, like, you have to go on an immuno suppressant, like, that's a big thing.
- [23:31]
B
It is.
- [23:32]
A
And to have somebody hear all the possible side effects and problems with being on an immunosuppressant and then them still say, like, yeah, let's do it, like something's had to have happened and happened over and over again that makes them say, like, well, let's just throw caution to the wind and try this thing Now I'm wondering About that for you.
- [23:49]
B
I think for me, it's just there is a certain level of exhaustion with living with this. Right. I want to be able to just go on the peloton and not have to worry about am I going to drop low or am I going to have to eat before, you know, I get on the bike. And it's just all of those decisions that you're making all day long can be so exhausting. And I understand why people, you know, say they have diabetes, burnout. I think that's a very real thing for a lot of us, especially when we've had it for, you know, my case, nearly four decades, for sure. You know, I'm in great health. I've had no complications from diabetes, thank goodness. But, but it's, it's just one of those things where it's, it's enough already. It's a full time job.
- [24:28]
A
You're like, that's enough of this. I'm good.
- [24:30]
B
Yes. It's like, sign me up for one of these, you know, options. Let's see if this works. I, I'll be honest, I think I probably would have gone down the route to, of doing the cadaver eyelets had I qualified or, you know, had my insurance been willing to pay for the procedure. Just because I would love to know what life is like without this.
- [24:49]
A
Yeah. Just, you're just desirous of anything happening that's different.
- [24:53]
B
Seriously?
- [24:53]
A
Yeah. You're just like, like, okay, I'm ready for something different now. Let's, let's be. Absolutely. So would you try something again? Like say this doesn't work, Would you? And they called you six months from now and they're like, hey, we got a, I don't know, dog sells this time. Let's go again. Would you be like, right on, let's go?
- [25:09]
B
Yeah, I think if I absolutely would consider it again. I mean, in this case, I felt like the worst case scenario with this procedure is that it just doesn't work. Right. There were no. I didn't have to worry. You know, you always want to weigh the, the risks and the benefits of these things, of course. But yeah, I think if it's the right procedure, as I felt this one was, I probably would consider it again.
- [25:32]
A
Yeah. Plus a curly tail is not that bad.
- [25:37]
B
My kids would have loved probably if I dressed up as a pig this year for Halloween.
- [25:42]
A
How old are your kids?
- [25:44]
B
11 and four.
- [25:45]
A
Oh, 11 and four. Yeah. Look at you. You had one when you got married and one after a wedding where you got drunk. What happened there Was. No, no.
- [25:54]
B
You know, after my first, I, I just thought I was good with one child. I really didn't think I was going to have any more kids. And then, you know, after they, maybe she was around five years old. I think you forget how hard it is in the beginning.
- [26:08]
A
I haven't forgotten.
- [26:10]
B
Do this again.
- [26:12]
A
I haven't forgotten. I have a, I have a kid with diabetes. I, I, I'm, I'm aware every day. She, Somebody said to me recently, like, you know, what is it you're waiting for? And I was like, for her to get to 25, because it's funny that you said 25, because I, I mean, all the stuff you've just talked about. Right. That happens to everybody. Happens to my daughter. It's going to happen to, if you're listening, it's going to happen to your kid. Like, there are people who I think outwardly appear to be handling it better, but I don't know that it doesn't impact everybody the same way, even if they don't show it.
- [26:43]
B
Yeah.
- [26:43]
A
You know, and it's just, there's parts of diabetes that Arden just skates through, and there's, and there's parts of it and I don't even know if I should say diabetes, like, autoimmune, like, and there's parts of it that, like, are hard for and.
- [26:57]
B
Absolutely.
- [26:57]
A
Yeah. And, you know, and it just, it's, I don't know what to do. Like, you know, so you try to be supportive, but people aren't always ready for that. You know, you can't force people to, you can't force people to do anything. You know, it's easier when they're kids because you say, like, here, do the thing, and I'm taller than you, so do it. And they're like, right on, and then they just do it. Right. But people start to grow and, you know, you know, their own struggles and, and their own mindset, and suddenly you're, you're just, you're an opinion. You're not a, you're not the end all be all anymore. So anyway, yeah, I say keep them little because they're easier, though.
- [27:35]
B
And I think maybe that was one benefit to getting type one as a child. And granted, I don't wish this upon anyone, especially children, but, you know, it's, it's, it's as if I don't really know life any other way. Right. I've had this for so, so long. But I, because of that, I, I, like I said, I am, I'm just open to you know, if there are. If there is the possibility to get rid of it, I. I'm certainly open to it.
- [28:00]
A
Well, sure. Because, sure, you don't have an experience to know it another way, but you can imagine it another way.
- [28:06]
B
Absolutely.
- [28:07]
A
You look at other people who don't have it, and you go, that seems better.
- [28:10]
B
That would be nice. Yeah.
- [28:11]
A
Yeah.
- [28:11]
B
Right.
- [28:12]
A
Your husband. Did your husband have any autoimmune issues or anything going on with him?
- [28:16]
B
None. And there's really none in my family either, really. There. I don't have any cousins or siblings. No one has type one, so that's just a mystery.
- [28:25]
A
Celiac?
- [28:26]
B
No. Celiac?
- [28:27]
A
Eczema?
- [28:29]
B
No.
- [28:30]
A
The Michael Jackson thing? Vitilago?
- [28:32]
B
No.
- [28:32]
A
Raynaud? Cold hands. Anybody have ra?
- [28:36]
B
No.
- [28:36]
A
I'll be damned. You just got super unlucky.
- [28:39]
B
Wonder. So what was the trigger? Was it a virus? You know, some environmental factor? You will never know. Right.
- [28:46]
A
Did you have a virus before you were diagnosed?
- [28:48]
B
I certainly don't remember if I did.
- [28:50]
A
Yeah. It would be like a nothing. Before you had diabetes, nobody paid attention to health. You were either sick or you were getting better or you weren't sick. Nobody was like, tracking anybody's health in the 80s.
- [29:02]
B
I certainly don't remember. What could, you know, a virus or what else could have possibly triggered it.
- [29:07]
A
Yeah, no, I hear you. Okay. So. Gosh. Do you ever think about testing your kids for auto. Anybody's.
- [29:16]
B
I do. I've done the trial net. In fact, I did it when they were both two, and I just ordered the kits again. They. There was a period of time, I guess, where you could not get the kits. I think there was. Maybe had something to do with lack of funding in this study, but now they're available again.
- [29:32]
A
Yeah.
- [29:33]
B
So I was able to order them, and I'll do another. Thankfully, they were negative when they were two, so I'm certainly hopeful they'll all, you know, be negative again. But, yes, I think I'll probably always do trial net, as long as I'm, you know, able to. I don't. I don't know how. How often they recommend we do it. That'll have to. I'll have to look up again, but they certainly were willing to send the kits again, so I thought, okay, great. Let's do it.
- [29:56]
A
Very nice. So I'm glad you get a little peace of mind from that. That's nice.
- [29:59]
B
Yeah.
- [29:59]
A
How do you manage? Right now, you pump CGM, MDI. What do you do?
- [30:04]
B
I have the Omnipod 5, and I'm using the Dexcom G6. The hospital actually gave me a G7. So the hospital and their research partner who was in Japan is. So it's like a blinded cgm. I can't see the numbers or anything like that, but I am carrying their device around and it's recording the seven.
- [30:26]
A
Yeah. And it's recording data for them. They'll download it later.
- [30:28]
B
That's right.
- [30:29]
A
Yeah. I remember those. That's how you used to have to get a cgm, by the way, Back in the day, you had to wear a blinded cgm. Then they went back and looked at your numbers and then told you if you were allowed to have one or not.
- [30:38]
B
Oh, my gosh.
- [30:39]
A
Wow.
- [30:40]
B
I remember that.
- [30:41]
A
Yeah, that was. That was fun. We did that one, you know, where you're just, like, hoping somebody gets low so that you'll get an excuse to get the se. I mean, really. And that's a horrible feeling. Like, you slap it on, you're like, I hope she. I hope these lows we keep telling her about happen while this thing's recording.
- [30:56]
B
Yeah.
- [30:56]
A
Obviously, we didn't make her low on purpose, but, like, it was like, no.
- [31:00]
B
These tools are so essential. It should never be a. It's a shame, and I. I won't go political on you, but it's like every diabetic should be able to access the best technology that there is out there for this. And I don't know how I live so many years without a cgm. It's really a miracle.
- [31:17]
A
How long have you had CGM and an algorithm? Like, I mean, with the algorithm.
- [31:22]
B
Not that long. Because before the Omnipod 5 came out, I was using whatever the first edition Omnipod was. I didn't have the dash.
- [31:31]
A
You had the original. You had the old. The original pod. You went from the original pod to the five?
- [31:35]
B
Yes.
- [31:35]
A
Really?
- [31:36]
B
Yeah.
- [31:36]
A
What was that called?
- [31:38]
B
I forget what it was called. Someone asked me this the other day, but I had that for probably a decade.
- [31:45]
A
Yeah.
- [31:46]
B
Yeah.
- [31:47]
A
How was your outcomes during that decade?
- [31:50]
B
You know what's funny? My A1C was better on the old school one than it is on the Omnipod 5, interestingly enough.
- [31:57]
A
Were you more focused on it?
- [31:59]
B
I wish I could tell you. I think if there is a downside to the Omnipod 5, in my opinion, is I do not. Like, there are times where I think it does not correctly estimate or predict that you're going low and it will cut me off, or I think far too long, and then that sends you back up to the 160s or 180s sometimes. That particular feature is not my favorite. I didn't have that problem before. I would bolus and wait the two, three hours, and if I needed to correct again, I would. But, yeah, I think my aimlessy is certainly been higher on the five, which I bet I don't love.
- [32:34]
A
Okay, well, I think they're working on another version of it right now, so I think it's in the testing phase.
- [32:40]
B
God, that would be great.
- [32:42]
A
Yeah. Like a. Like a 2.0 kind of a feeling.
- [32:44]
B
Yeah.
- [32:45]
A
But I was wondering, like, it. Because it's telling you it's taking care of things now, are you not looking in on it as much and helping it? Do you know what I mean? Like, do you ever just think, like, well, I probably need more insulin here. I'll. I'll albolis again, or do you just wait for it?
- [32:59]
B
I admit I am guilty of overriding some of the decisions that the five is making. And I love my endocrinologist. He's amazing and sounds like you just have to trust it. You have to give it. Give it more time and. But I. I do. I have moments where I'm like, okay, I'm tired of this. I'm tired of waiting. I'm just gonna take a half unit or a unit and see where we land.
- [33:21]
A
I think you should, first of all. But, like, you know, at the same time, I was wondering if you weren't doing that, but. But you are. You're.
- [33:27]
B
Yeah, I don't.
- [33:28]
A
Yeah.
- [33:29]
B
Manipulated at times. Yeah.
- [33:31]
A
Is it easier? Like, is it enough to take away whatever made you decide to do the cell transplant? Like, you know, if. If it gets better and better, you know, if these.
- [33:42]
B
Oh, yeah, if it gets better. And I think there's a possibility. So let's say in a month I start seeing some change to insulin requirements, you know, meaning. And this is what's also being closely tracked by the hospital. We go over how much, you know, what is your daily insulin. We'll look at it week to week, because that's how we're going to be able to tell if things are changing. Am I taking less insulin? Right. Are we seeing anything on a C peptide test, like these sorts of things? So if we start. If the islets start doing their job and we're making insulin, I won't be taking as much synthetic insulin. So maybe the Omnipod 5 will work out even better for me in that situation.
- [34:19]
A
Right.
- [34:20]
B
But, yeah, time will tell. You know, when the surgeon from Switzerland came to see me in the hospital, the one who I mentioned runs The Chicago Diabetes Project. He mentioned to me that he. That I should expect to see some change in six weeks. So if that's the case, we're talking.
- [34:36]
A
About two weeks from now, two more weeks.
- [34:38]
B
So I'm excited to see if that's the case. He certainly seemed confident that I was going to see some level of change. So that gives me hope. He's also amazing, and I would recommend that every type 1 look him up and get to know him and look at the Chicago Diabetes Project. His name is Dr. Jose Oberholzer. He's just an amazing human being. His entire life is dedicated towards developing cures. He runs in the Chicago Marathon. Every single year, they raise money and that money goes directly to cure focused research. And what I found amazing about him is he ran the Chicago Marathon this year on a Sunday and comes to see me in the hospital two days later. Just walked in my room and I was like, wow, this is. I had no idea that he was there, that he would even stop by to see me. So I was really, I was really taken aback by that.
- [35:29]
A
I don't know, you're probably pretty famous in this. You're the second person that did it with him.
- [35:34]
B
That was a really special surprise, you know, to see him.
- [35:37]
A
I felt, you know, he probably opened that door. I was like, oh, she's still alive. Good. That's awesome.
- [35:46]
B
Yeah. No, I definitely feel a deep sense of gratitude to him and really the entire transplant team in Chicago for their work, because it's now they've done some amazing work towards, you know, a cure for all of us.
- [35:57]
A
Did they give you any idea? Do they say, like, listen, if this doesn't work, this is why it doesn't work? Like, is there. How much of this do they understand? Or do you think they're just like, I wonder what's going to happen now?
- [36:08]
B
Well, you know, there. So they, There is data obviously, from the studies that were done in other countries. The first one, I think was New Zealand. So this is, this was first done, I believe, in 2014. You know, they work with their, their research partners in New Zealand and in Japan and probably other places. So I know that this has been well studied. It just had. Hadn't been approved. You know, they had to go through FDA approvals and what have you to be able to do this in the United States. So this is the first time it's being done here. But, you know, it has been done elsewhere. So it's. And it's still being studied. So we really don't know.
- [36:44]
A
Do you Know, if it's ramping up, are they going to start doing more people or more cells?
- [36:49]
B
Well, this clinical trial is still open, so as far as I understand, people could apply. I'm not sure how many patients they're going to recruit for this, and my understanding is that there's two phases. So I'm in phase one, and we got a certain amount of islets. Phase two, they're supposed to. Those patients are going to get a little bit more islets. So, you know, this is all part of testing the safety and efficacy of these cells. So I think the second round of patients will get, you know, a bigger batch of eyelids.
- [37:17]
A
Does the. The pig get the liver or do they.
- [37:20]
B
Oh, so this is the part that I admit makes me sad.
- [37:23]
A
Oh, he's. He's pork chops now. Is that right?
- [37:26]
B
You know, because I don't know, and don't quote me on this, but I had heard that somewhere between 12 and 15 baby pigs are taken for one. So, you know, I know, and I do. I. I have soft oper animals, so of course it makes me feel bad. The other part of me is like, I really want to get rid of diabetes, so I'm in a tough place on that issue right now.
- [37:45]
A
Kelly's like, all right, I'll do it. She's like, I don't want to kill him, but I'm okay with it. I just.
- [37:51]
B
Yeah, it's just when I. I know it took me a while to accept that this is what. This is the road we're taking. Okay.
- [37:57]
A
Do you have any idea how they came up with pigs? Like, why. Why pigs?
- [38:01]
B
Well, I know that. That we have used pigs for other things. You know, they do heart valve replacements. Yeah.
- [38:08]
A
No, I just didn't know if they, like, told you. You know, the greatest thing about your story so far is that it feels like you just got to a point where you were like, pig stuff, whatever. I'm not going to ask a ton of questions here. Like, let's go. Like, really?
- [38:21]
B
There may be some truth.
- [38:22]
A
Oh, no, no, I heard it. Yeah, you heard it in your voice a couple times. I heard in your voice at one point because you said something about, like, I had to look it up. It was about the momentum. You're like, the momentum.
- [38:32]
B
I didn't even know we had that.
- [38:33]
A
You sat in a room and someone was like, we're going to put some slices in you and stick some pig cells in your momentum. And you were like, rock and roll. Let's do it. I feel like if they would have Said, we're going to cut off your big toes and stick them in your ears and it might lower your insulin needs. You would have been like, okay, I.
- [38:52]
B
Would consider, definitely, I would consider a lot at this point.
- [38:55]
A
But that's, that's the part I still can't. I don't feel like I've dug into. I don't feel like I've gotten to it yet. Like, why, why do you feel that? Listen, Greg, aside of the obvious idea that I don't want you to have type 1 diabetes and you don't want that, and I don't want my daughter to have like that, that aside. But there's something fun. You've been doing it for four decades.
- [39:15]
B
Like there's something burnout. You know, you're tired, you're tired of it. I'm tired of making many decisions all day long about what to eat, how much insulin to take. Okay, I want to exercise now, but if I lift weights, I'm going to go high. If I do cardio, I'm going to go low. Do I need to eat a snack before this? Does that have, do I have to accompany with protein to keep the blood sugar stable? It's like all those many decisions are just so exhausting all day long.
- [39:37]
A
Okay. It's just you've done it one too many times.
- [39:40]
B
Oh, yeah.
- [39:41]
A
Like, but it's the repetition of something, right?
- [39:43]
B
Like, of course it's the repetition. And I just go back to, you know, wouldn't it be great to just have this burden, you know, lifted? It's like, it is a burden. It's, it's another, you know, you have a full time job, you're a mom. And then, you know, I feel like diabetes is often your third, you know, full time job. It really is.
- [40:02]
A
And it's, I hear it, I hear you.
- [40:03]
B
And look, we have technology that is amazing. Thank God we're not where I was in the 80s and 90s with nothing right to manage this. We have great tools now, which is wonderful.
- [40:13]
A
Yeah.
- [40:13]
B
But they certainly, you know, don't replace.
- [40:17]
A
A normal life, just a regular life where you don't have to, like, think about this stuff. So, yes, dig into your personality for a second because I just got done recording with a lady who's, I asked her a similar question from a different perspective because she's just one of those people who's like, no, it's all fine, I'm good. You know what I mean? She's had it like 15 years longer than you. And she's just, as I spoke to her I was like, is that your personality? Have you always been upbeat like this? Do things not bother you? So my question back to you is, does this make sense with your personality or is it just such a thing that's overpowering who you are even? And you're just like, I have to get rid of this somehow.
- [40:55]
B
Oh, that's a tough one. I just think there's a part of me that has this desire to continue to pursue options. So if there are options out there, and right now it's clinical trial, because I would have certainly taken the cadaver path. But doing that, I would have been on low dose immunosuppressants. But to me, I felt like it still would be better than just the daily day to day management of diabetes. I was really willing to go down that road.
- [41:23]
A
Part of this then for you is just a desire to continue looking. Yeah, okay.
- [41:28]
B
Yeah. And granted, I don't know what I'll be able to do in the future, right. This, I may not be able to. I don't know what will happen, let's say a year or two years from now, like if this doesn't work, you know, do I, do we do it again or am I allowed to then pursue the other path? I'm not really sure what the answer is there yet, but I certainly think I would be open to continuing to pursue cell based therapies. You know they call these functional cures, right? Because it's, we're never going to restart your pancreas. That's never going to happen. But we have other, they have other procedures that they can do that essentially will cure you of diabetes and that they are these cell based therapies.
- [42:08]
A
Yeah, I don't, I'll tell you, like, I wonder when you said it's never going to happen like that, I wonder how it is going to happen. Because things that seem disconnected now but maybe aren't completely. Like I, I witnessed a person go on a GOP recently, doesn't have diabetes. Right. But like you just look at metabolically what happened to this person. So much inflammation left their body and so many different impacts of inflammation. And then you see type ones who take it, who you know, have a decrease in their insulin needs and you're like, yes. And then I think back to 20 years ago when I had some researcher on and kind of wondering out loud, are those beta cells in my pancreas? Are they, are they really gone? Are they ruined? Or is there just so much inflammation? I remember these words, there's just so much inflammation in that they can't move, they can't do what they're supposed to do. And. And that's one of the things that somebody's been studying for a while. Like, is it just all, like, is it your immune system attacking? Like, I don't know. Like, I just wonder, like, is there a cocktail of things? Or are you. Right. Is it. You have an autoimmune response. It is just too harsh. Even if we could magically flip those beta cells back on, your immune system would come back in and be like, oh, no.
- [43:16]
B
Would come back and attack it.
- [43:18]
A
Yeah. And grab them again. Like, is this more about autoimmunity than it is about the pancreas? Like, you know, I think it's all of that.
- [43:26]
B
Sure.
- [43:27]
A
It's so much of it. Right. And. And in the meantime, good people, like, the ones you're dealing with are like, I'm gonna take this piece of it here and focus on this piece right here, you know, and I'm gonna work on cell therapy. Because like you said, functionally. I mean, honestly, if somebody could put four slits in your omentum, by the way, we'd have to figure out where it is. But after we find out where it is, right? And we do this and. And that fixed it, then who the hell cares, really? You know, like, you. You still have other problems. You still have an overactive immune system. Like, you said that if you take all this off your plate, then you just be back to having, like, regular people problems.
- [44:01]
B
Right?
- [44:02]
A
Seriously. Without all the math and the worry and the low blood sugars and every other thing that comes with it.
- [44:08]
B
Yes. No, absolutely. And these cells, I mean, they're. They're sort of, you know, in. In a baby phase right now there. It's only been, what, four weeks?
- [44:18]
A
Yeah.
- [44:19]
B
So in the first few weeks, they're trying to survive, and they have to connect to your blood supply, and so they're. They're busy at work, so I've been told.
- [44:28]
A
It's awesome.
- [44:29]
B
And if engraftment, you know, succeeds, they'll be able to produce a small, you know, some insulin. So, I don't know.
- [44:36]
A
Question for you.
- [44:37]
B
Yeah.
- [44:37]
A
If it starts to work right, like, oh, you should wake up in a couple days, 14 days from now, and you're like, hey, I got low overnight for no real reason. I'm going to turn my basil down, like. Or, you know, like that kind of thing happens, and you start noticing you use less insulin. Is there any reason you can't go back and go, hey, Doc, why don't you shove Some more of them in there, right?
- [44:57]
B
Well, unfortunately, I don't think it will work that way for me. So their research partner, I think this study was funded by a Japanese pharmaceutical company. So they're obviously heavily involved in this.
- [45:08]
A
And they need to track your progress.
- [45:10]
B
And I think even my blood. The blood tests that I take every week get sent over to Japan for additional testing. So it's kind of fascinating. But, yeah, they certainly are in control of some of the decisions here, so I don't know that they'll let me just go for round two right away.
- [45:25]
A
I interviewed a lady one time who did one of those. I think, the Veritex pouch or one of those pouches. And. And it was a blind study, so she didn't know if she, you know, they didn't tell her if they actually. They actually opened her up, put a pouch in and didn't tell her if it had the cel or not.
- [45:38]
B
Oh, my gosh.
- [45:39]
A
Right. So she's out in front trying to help everybody out, which is awesome. But she starts seeing a real decrease in her needs, her insulin needs. But then they took the pouch back out, and I told her. I was like, I would have left the country. I would have been like, hey, I know I said I wanted to be part of this, but you screw off. I'm. I'm. I'm out of here. You're not taking my pouch back.
- [45:56]
B
Yeah.
- [45:57]
A
And that crazy, because they had to take it back out again because that was the part in the study they were up to.
- [46:01]
B
Oh, see, I don't know that I could do that.
- [46:03]
A
Yeah, no, I would. I told her I would have. I would have went to Mexico. I would have been like, goodbye.
- [46:07]
B
There's no way.
- [46:08]
A
Sorry, I'm leaving. You're not taking my pouch.
- [46:11]
B
Right.
- [46:12]
A
But I just think, like, in that same vein, you were nice enough to jump into this at this point, and it would. I'd feel personally sad for you if, like, two years from now they realized they should have just given you, like, 18 more ounces of, you know, of piggy stuff and that they still could give it to you, but you're part of, like, some studies, so they can't change it for you. So thank you from everybody listening. I. We really appreciate that you did this. It's awesome.
- [46:36]
B
Yeah. No, absolutely. I hope that it's, you know, I. I imagine I'll be in the research books, and I hope that this will help, you know, type ones in the future so we can start to identify whether this is. This is a path that Will, you know, help all of us?
- [46:50]
A
Wouldn't it be awesome? I mean, an outpatient patient procedure that you basically took an Advil to, like, get through the discomfort of it.
- [46:58]
B
Very easy surgery, really.
- [47:00]
A
Yeah.
- [47:00]
B
Different surgeries in my life, this was easy.
- [47:02]
A
If that were to help something or even be the beginning of something, it would just. It would just be incredible.
- [47:08]
B
Absolutely.
- [47:09]
A
When you think about the future with diabetes, if, let's say you have a decreased need and it does take away some of your decision making, that has to happen during the day, can you imagine other ways to help yourself? Like, have you, like, have you thought of, like, other things you could do to release the burden a little bit to help the burnout?
- [47:29]
B
No, and I think that's a great question. I. It's just always there, you know, and some days, maybe it's. You feel it more than others, but I think I struggle the most with. You want to go out? There's certain meals that I know are not going to be great for blood sugar management. So it's just like, be so nice to just be able to go to a restaurant with your family and just order the meal that you want and not have any guilt or any worry or. Or even, you know, be able to go take an exercise class and not sit here and have to do all these. Implement all these strategies to prevent yourself from going high or low. You know, I think just being able to remove all of that would be amazing.
- [48:07]
A
Talk about the guilt for a second. What do you mean, the guilt?
- [48:10]
B
I guess I'll give you an example. Like, if you're going to go out to dinner with your family, Right. And we all know carb counting is. It's not an exact science. So there are certain meals I think I generally would avoid eating because I know they're going to be difficult. You know, no matter how well I do with the carb counting or pre bolusing, it just sometimes doesn't work. Right. You know, that's just another thing I think that frustrates me with living with diabetes is just happen to like, no, I'm not gonna do that, or, you know, not gonna have ice cream with the kids. You know, we take the kids out for ice cream. I never get it. Never. Because I don't want to deal with it.
- [48:44]
A
Yeah, but the guilt is that you're not enjoying the ice cream with the kids.
- [48:48]
B
In that scenario, maybe the guilt is if you. And if you do partake. Yeah. If there's a time where you do partake in something that's, you know, gonna not be great for your blood sugar and then you're like feeling bad about it three or four hours later. I think sometimes I do. It's like, oh, why did I eat that? I knew I shouldn't have had that, you know, like some birthday cake, like at someone's house. That's a good example. I had birthday cake recently and I'm like, oh, just a tiny piece. It'll be fine. No, it wasn't fine.
- [49:12]
A
So the, the guilt can come in a lot of different ways. Like, so you could, you could feel guilty for not partaking with your family. You could feel guilty after your blood sugar goes up. Later, you could feel, you feel guilty because it's a thing we all have to talk about or deal with or even guilty. Then if you try to ignore it, then you feel guilty for ignoring it.
- [49:31]
B
Yeah, no, that's all, that's, that's all true, right?
- [49:34]
A
Yeah, yeah. And I'm missing some examples too, I would imagine.
- [49:38]
B
No, I think we definitely deal with all of that as type ones. I think that's very accurate.
- [49:43]
A
Every day doesn't stop.
- [49:45]
B
Yeah, it never stops. It's always there.
- [49:48]
A
Geez, I, I'm sorry. I just, as my daughter gets older, I think more and more about these parts of it, you know.
- [49:54]
B
Well, you know, I, I, it's, and it's hard. Look, we all have our moments, our struggles with diabetes, but I think for the most part, I think a lot of us care about managing it right? We don't, we don't want to have problems. And so I'm thankful, knock on wood, that after 38 years, I don't have any health issues and was able to have two successful pregnancies. And I, when I talk to parents that have young children that like, just got diagnosed, you know, they just can't imagine, like, how are we going to get through this and like, what's going to happen when they get older. And it's like, tell them, like, you can do it. It's not going to be easy, but they can do everything that, you know, a non diabetic can do, whether it's, you know, certain sports, we can do all of it. It's just that it, it takes a, it just takes a little more focus. We've got to, you know, closely manage our, our sugars. And I know that that's not fun for any of us, but it's not like we, we can't do, you know.
- [50:52]
A
It, it's just, it's, there's a human aspect of it that stops people from Responding the way that. That the. The situation needs all the time. Yeah. You know, so you have this. I don't know, there's this duality happening. Right. Like, you're like, I. I can put all this effort into it, but then. And I'm happy to put the effort in, but then the burnout hits, and you can't put. The blood sugar gets higher, it bounces around. Then you feel terrible physically. Then you have the guilt that you didn't do something about it. Like, it creates in action a stillness where you're not doing anything all of a sudden on any front.
- [51:24]
B
I mean, and all of that is true. And I think to say that you feel like that every single day. I don't think I do. But, you know, you. You absolutely have those moments that, you know is a type one.
- [51:36]
A
Yeah. And you don't want to have them, like, in your neighbor's house while everybody's singing Happy Birthday. Yeah.
- [51:41]
B
Right, right.
- [51:44]
A
Or, you know, Thanksgiving, when your grandmother, you know, your. Your cousin's like, oh, she's not having pie. And you're like, no. Yeah, yeah. What's something wrong with my pie? What's wrong with my pie, Kelly?
- [51:55]
B
Yeah. Yes.
- [51:56]
A
There's nothing wrong with it. My pancreas doesn't work.
- [51:59]
B
Take the food away from you because they're like, you can't eat that.
- [52:01]
A
You can. Did the old ladies do that?
- [52:04]
B
Oh, yeah, yeah, yeah.
- [52:06]
A
Give me that. You don't want that. Yeah, well, they're probably right, too. Damn it.
- [52:11]
B
We're like, we shouldn't have this. But, you know.
- [52:14]
A
Oh, my gosh.
- [52:15]
B
What do you know about pre bolusing? I'm joking.
- [52:17]
A
Would it help you if. God, what would help you? Could you throw some of it on your husband?
- [52:25]
B
In what way? Like what?
- [52:26]
A
I don't know. You'd be like, dude, listen, you're in charge of dinner bolusing. Like, get it? Like, because what. What occurs to me. It's going to sound silly for a second, especially to adults, but just hang with me for a second. When my kid was younger and didn't have any thoughts of her own, I could put her B1C wherever the hell I wanted it, and I could do it effortlessly because I had a different motivation. I'm not burned out. I'm not carrying the burden she's carrying, so I have a little more mental space for it. And when you put somebody else in. Because we're talking all the time about these algorithms, Right. Like, what's the goal? You're hoping one of them works so well. One day that your blood sugar just sits at 90 and doesn't move very much.
- [53:03]
B
Right.
- [53:03]
A
We're all sitting around hoping that happens. What if your husband could do that for you? What if he could alleviate a little bit of it at one meal or on, like, I don't know. Or on the weekend or. There's no way you'd ever give control over it over to him.
- [53:17]
B
But I was just gonna say that probably would be my.
- [53:20]
A
You don't know this guy. But, like, it's a bad idea. But, like, if I came to your house and I was like, hey, I'm gonna live there for a week. I'll do all your bolusing. Like, don't you think at the end of the week you'd be like, this was awesome?
- [53:33]
B
Well, you don't think. See, I just think about. There's a control piece to it, too, right? Like, you. I might feel strange that I can't take my whole bolus or see where my blood sugar is heading if I put all of that on someone else and I'm like, well, yeah, but treat.
- [53:49]
A
Me like a robot for a second. Let's say it was a robot that showed up at your house and it was making all the decisions for you or that you. You'd be. Would you be okay with that?
- [53:58]
B
Yeah. If it could control all the highs and the lows and I didn't have to think about anything, then yes.
- [54:03]
A
Do you think that would make the burnout go away?
- [54:04]
B
Oh, sure it would. Absolutely.
- [54:06]
A
Okay.
- [54:07]
B
As long as I don't need to worry about, you know, bad hypoglycemia episodes. And we're putting a robot in charge of all this. Oh, that would be amazing. And maybe they could also use an insulin that works faster, too. Can throw that in.
- [54:19]
A
Why don't we teach it to vacuum? Why don't we teach it to vacuum while we're at it? That's all I'm saying.
- [54:24]
B
That would be great.
- [54:25]
A
Well, goddamn right. I hope that I'm doing a good job of picking through your psyche about this. Like, I. I want to understand. Like, I. I get that you can feel guilty at times. I get that you feel burnout. I get that it sucks. Like, I understand all that, but I don't know that contextually, people listening would be able to, like, figure out the why. I. I would imagine. Because I think the way people's minds work is no matter what you say, someone's gonna say, yeah, but. Yeah, but this. Yeah, but that.
- [54:50]
B
Well, I had experienced some of that. People were like, why Would you want to do a study? Why would you want to participate in something where you don't even know if this is going to work? Like, well, that's the whole point. It's a clinical trial.
- [55:02]
A
If no one does it, we're never going to find out.
- [55:04]
B
We're never going to get anywhere if no one signs up for this. And I saw a benefit to me in this, for sure. I mean, based on what we've learned, the data from the other studies, and this certainly, this is happening 11 years after the first porcine transplant. So a lot has, you know, changed since that time, I would imagine. I just thought, I want to be part of something that has the potential to change, you know, the future for type one diabetics.
- [55:32]
A
Yeah, no, I said it before. I'll say it again. I appreciate it. I think it's lovely that you did that.
- [55:36]
B
Thank you.
- [55:37]
A
You should have responded to that person and said, what if there was a trial that would stop you from a head? Wouldn't you do it?
- [55:44]
B
They're like, why wouldn't you sign up for the other one? The guarantee? Like, why wouldn't you do the cadaver eyelets? It's a guarantee. I said, well, yes, I understand that, but also, you know, there's immunosuppressants involved. Like, obviously there are things you have to weigh in each of these studies.
- [55:58]
A
Those immunosuppressants are no joke. I've. I've spoken to a number of people who have had to have transplants. That wasn't like, it wasn't the thing. They decided they were like, hey, let's try it. Like, it happened to them. They had to do it. And that ain't easy. And it's its own new problem. Trust me, you're burnout on that just as much as the other thing. Now you're going to be burned out on something else and you're gonna have insulin. And then, by the way, I've also. I've also interviewed people who've had three pancreases.
- [56:24]
B
Wow.
- [56:26]
A
And then they stop and they give them another one. And then it works. And then it stops and they give them another. Like. Like that. You know, I think people get confused sometimes. They think medicine is television. Like, it's not. It's not. This isn't a sci fi show where everything works. You know what I mean? Like, these are. It's 20, 25. We're trying it, and it's, you know, some of it works and some of it doesn't.
- [56:48]
B
The good news, I mean, for those that do pursue the cadaver islets. Compared to a pancreas transplant, I mean, you're on the full dose anti rejection drugs the rest of your life, which come with risks. Yeah, for sure that, this, when you do an eyelid cell transplant, the dosage is far less than a major organ transplant. So that's good, but it's not that, you know, it doesn't come with no risk. Right. You're still trading, you know, one thing for another. And so, yeah, I think anybody who's considering that has to, has to weigh the, the pros and the cons. But I certainly would have considered it. I, from the, the research that I did, I thought it was a. For whatever reason, I really felt strongly that it would be better than having diabetes. So I was heading down that path and you know, once insurance kind of fell through, I said, okay, well maybe the next path to take is to try to participate in a clinical trial because, you know, the. I won't have to worry about going through insurance and yeah, you know, I can help.
- [57:44]
A
Your husband was on board with this. Did he have any reservations when you brought it up?
- [57:48]
B
Yeah, no, I think he, you know, he's always been very supportive, you know, and when I told him about this, I think we were both just at first very surprised to learn that we had options in the Chicago area. Yeah, more than I ever knew. I really knew nothing about these trials. And so I had spoken to four different research hospitals in the area, just landed on UIC or University of Illinois in Chicago. But he supported it. He, he looked at, you know, I had emailed him some information about the study and just said, if this is something you really want to do, I definitely support it. And I mean, I flat out ask the doctor. I just need to know what the real risks are here. I have two young children, so if, like dying is a risk, like, I need to know that, you know.
- [58:30]
A
Right.
- [58:31]
B
I, but, you know, and of course, I think what I learned in speaking to the research team and looking at the other studies, I mean, no one has died from doing a poor scene transplant. The worst that could possibly happen here is it just doesn't. The cells don't produce enough insulin for us to get off of synthetic insulin, but they certainly could work to some extent. And I think that even that would be really just a break for me.
- [58:56]
A
Yeah. Oh, good for I, I hope so too. Like, I, I hope it. I just, I don't know. I, I hope the best for all of us and I'm very pleased for people to be out in the world trying to put, push this stuff forward and hopefully they'll have. Absolutely, hopefully they'll have good success and be able to share it with everybody.
- [59:12]
B
Yes, that is certainly the hope and I do believe that's where we're headed. There's an incredible amount of work being done in the space and has been for a very long time. You know, people think, oh, gosh, this is so new. Why are you doing this? It's like, it's not really new. I mean, the, one of the surgeons did his first transplant in 1996. It's. This is not new.
- [59:29]
A
No, I, I interviewed somebody, I mean, easily 15 years ago about like those vertex like pouches and stuff like that. And so, you know, people been at after this for a while. They just got to figure out the technology behind it and, and yes. Oh, well, all right. I got my fingers crossed.
- [59:46]
B
Well, thank you.
- [59:47]
A
You're welcome. I appreciate you doing this with me too. This is a World Diabetes Day. We're recording this.
- [59:52]
B
Oh, that's right. Well, that's pretty spectacular. Well, thank you for having me on. I really appreciate it.
- [59:57]
A
No, you were awesome. You really were. Hold on one second for me. I appreciate it. Give me one second. Today's episode was sponsored by Skin Grip and Skin Grip. They understand what life with diabetes is like and they know how infuriating it can be when a device falls off prematurely. And they don't want that to happen to you. Juice Box podcast listeners save 20 off of their first order when you use the link skingrip.com Juicebox links are also available in the show notes of your podcast player and@juiceboxpodcast.com this episode of the Juice Box Podcast was sponsored by usmed usmed.com juicebox or call 888-72115. Get started today with usmed. A huge thanks to my longest sponsor, Omnipod. Check out the Omnipod 5 now with my link omnipod.com juicebox you may be eligible for a free starter kit. A free Omnipod 5 starter kit at my link. Go check it out. Omnipod.com Juicebox terms and conditions apply. Full term terms and conditions can be found@ omnipod.com juicebox thank you so much for listening. I'll be back very soon with another episode of the Juice Box Podcast. If you're not already subscribed or following the podcast in your favorite audio app like Spotify or Apple podcasts, please do that now. Seriously, just to hit, follow or subscribe will really help the show. If you go a little further in Apple Podcasts and set it up so that it downloads all new episodes, I'll be your best friend. And if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card? If you're looking for community around type 1 diabetes, check out the Juice Box Podcast. Private Facebook group juice box podcast, type 1 diabetes but everybody is welcome. Type 1, type 2 gestational loved ones. It doesn't matter to me. If you're impacted by diabetes and you're looking for support, comfort or community, check out Juice box podcast type 1 diabetes on Facebook. If you'd like to hear about diabetes management in easy to take in bits, check out the Small Sips. That's the series on the Juice Box Podcast that listeners are talking about like it's a cheat code. These are perfect little bursts of clarity. One person said, I finally understood things I've heard a hundred times. Short, simple, and somehow exactly what I needed. People say small sips feels like someone pulling up a chair, sliding a cup across the table and giving you one clean idea at a time. Nothing overwhelming, no fire hose of information, just steady, helpful nudges that actually stick. People listen in their car, on walks, or while they're actually bolusing anytime that they need a quick shot of perspective. And the reviews, they all say the same thing. Small sips makes diabetes make sense. Search for the Juice Box Podcast Small Sips wherever you get audio. If you have a podcast and you need a fantastic editor, you want Rob from Wrong Way Recording. Listen, truth be told, I'm like 20% smarter. When Rob edits me, he takes out all the, like, gaps of time. And when I go and stuff like that. And it just, I don't know, man. Like, I listen back and I'm like, why do I sound smarter? And then I remember because I did one smart thing. I hired rob@worldwayrecording.com.