#1712 Porcine Cell Recipient
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Kelly shares her groundbreaking experience as the second person in the US to undergo a porcine islet cell transplant. She discusses battling T1D burnout, the unique procedure involving the omentum, and her hope for a functional cure.
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Scott Benner (0:00) Hello, friends. (0:01) Welcome to the Juice Box podcast. (0:03) Happy holidays to everyone juggling carbs, cookies, and the chaos of this season.
Kelly (0:16) My name is Kelly. (0:18) I live in Illinois. (0:19) I've been a type one diabetic for thirty eight years. (0:23) I recently had what is called a porcine islet transplant. (0:27) I am about a month out now, joined a clinical trial.
Kelly (0:30) I'm excited to talk about that, today.
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Kelly (2:37) My name is Kelly. (2:38) I live in Illinois. (2:40) I've been a type one diabetic for thirty eight years. (2:44) I recently had what is called a porcine islet transplant. (2:48) I am about a month out now, joined a clinical trial.
Kelly (2:51) I'm excited to talk about that, today.
Scott Benner (2:53) Awesome. (2:54) Kelly from Illinois. (2:56) You're Kellinois. (2:58) Now we're 30 did you say thirty eight years?
Kelly (3:02) Thirty eight years. (3:03) How old?
Scott Benner (3:03) How old are you now?
Kelly (3:05) 45.
Scott Benner (3:06) Wow.
Kelly (3:07) I was diagnosed just before, just before I started third grade.
Scott Benner (3:11) Okay. (3:12) Alright. (3:13) Do you remember much about it?
Kelly (3:15) So we were living in South Florida at the time. (3:18) I remember being in second grade and just having all the classic symptoms. (3:21) Right? (3:22) Frequent urination. (3:23) Just excessive thirst was probably the one I remember the most.
Kelly (3:27) My parents started to notice that I was losing weight. (3:30) And at one point, I was starting to lose some hair. (3:33) So they took me to the doctor, and, they, of course, did the blood did the blood test, and it was off the charts. (3:40) I don't think that the machine could've you know, the glucose monitor could read it back then. (3:44) So the next move was to the hospital.
Kelly (3:46) So I missed the beginning of third grade, I think, by two weeks. (3:50) But, yeah, I remember that day very vividly. (3:53) It's obviously very traumatizing being a kid Yeah. (3:57) And then having to learn how to take shots and all of that. (4:00) My parents, thank god for them, I mean, were amazing and and really did a lot of this in the beginning.
Kelly (4:06) I don't even know that I actually took my own insulin syringe for probably a year or so after diagnosis. (4:11) My parents were just very heavily involved. (4:13) So but, yeah, I'm I'm glad that those days were over and the lack of technologies, which we had nothing back then. (4:20) Mhmm. (4:20) Compared to now, I don't know how we made it through the eighties and the nineties, to be honest.
Kelly (4:25) It's very diff you know, very difficult time to be a diabetic, I think.
Scott Benner (4:28) Yeah. (4:29) What do you think the biggest change is? (4:31) Like, not just like, don't tell me it's a CGM or it's this. (4:34) Like, what is it for you personally? (4:35) Like, what has changed for the better for people with type one diabetes?
Kelly (4:39) Well, know, when I think about how we manage diabetes in the eighties and nineties, it just seems like a it's I mean, in retrospect, it seems like it was a disaster back then. (4:49) I mean, your your parents were handed a sliding scale to figure out, you know, how much insulin you're gonna need for carbs and all of this. (4:57) And, I think we took two shots a day back then. (5:00) There was no testing of blood sugar through, like, maybe as aggressively as we should have throughout the day. (5:05) I think we just did it before and after meals, and that was it.
Kelly (5:08) So it's the not not knowing, right, what your blood sugar is. (5:11) Like, we can just look down look down at our CGM and and see that, you know, right away. (5:16) I I I just could 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. (5:24) Yeah. (5:25) It almost seems like on some level, it wasn't, really the safest back then.
Kelly (5:29) You know?
Scott Benner (5:30) But what you it's what you had, though. (5:31) Right? (5:31) I mean, it's not
Kelly (5:32) like It's all we had. (5:33) Yeah.
Scott Benner (5:34) And so health wise, when you think of yourself at 20, did you think of yourself as unhealthy?
Kelly (5:43) I don't think I ever thought of myself as unhealthy, but I even in my twenties think that my level of care probably wasn't what it is now because being a college student, you know, I I don't think I was as focused. (5:56) I mean, I remember going to bed thinking, oh, I really should test my blood sugar, and I wouldn't. (6:00) You know? (6:00) And so we didn't have CGMs when I was in college either. (6:05) So, you know, there there were definitely some moments that gave me some wake up calls back then.
Kelly (6:12) 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. (6:23) I was like, why am I sitting here? (6:25) What am I doing? (6:26) And so it was moments like that that really forced me to take better care of myself. (6:31) I'd say probably around the age of 25, I just got really serious about, okay.
Kelly (6:35) I need to go on an insulin pump, but I need to I need I need to make sure that I'm really taking care of myself. (6:39) I don't wanna wake up on the Basement Floor, you know, Mhmm. (6:42) Not really knowing where I am, what I'm doing, and somehow I miraculously came out of that on my own.
Scott Benner (6:48) What do you think happened at 25?
Kelly (6:50) I can only imagine it was another severe low. (6:53) Like, I never had to go to the hospital for a low. (6:55) 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. (7:02) And I remember thinking, what are we doing? (7:05) Where are we going?
Kelly (7:06) I'm in my pajamas. (7:07) I had a a little glass of juice in my lap, and my father says, you're not acting right. (7:11) I have to take you to the hospital. (7:12) I said, no. (7:13) I'm fine.
Kelly (7:14) Turn around. (7:14) I made him turn around. (7:16) But I think it was one of those moments, and maybe it was that moment, that just made me realize, like, you've gotta stop this. (7:22) Like, you've gotta figure out how to take better care of yourself or you're, you know, you're not gonna live with this. (7:27) You know?
Kelly (7:28) And I don't think I was ever I don't think I I would ever, like, fully neglected my diabetes. (7:32) 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. (7:37) So right around, I'd say, age of 25, I got serious and never had any any issues like that again.
Scott Benner (7:43) Yeah. (7:44) Do you have context for they say it takes into your mid twenties for your brain to fully form for you to be, like, you know, kind of a a a complete person. (7:53) So you had some impacts that kinda snapped you right, and then you got yourself together and never went back. (7:59) It didn't go backwards on you.
Kelly (8:01) Yeah. (8:02) Exactly.
Scott Benner (8:02) Awesome. (8:03) Were you married at that point or dating seriously? (8:05) Anything like that?
Kelly (8:06) I mean, I was so I mean, I graduated college around '22, and I got a job right away. (8:13) So, no, I didn't actually get married till I was about 33.
Scott Benner (8:16) Mhmm. (8:17) And
Kelly (8:17) I have two children and I had very successful pregnancies despite type one, I'm very grateful for that.
Scott Benner (8:23) Nice.
Kelly (8:24) You know, I think just having diabetes for thirty eight 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 I feel. (8:37) I think it's just, you know, you can never, like, take a step away from diabetes. (8:41) And I think that's what led me down the path of trying to explore what clinical trials are out there. (8:46) And it really took me moving to Illinois. (8:48) I mean, I lived in the Northern Virginia area for about thirty three years.
Kelly (8:53) Never really researched this. (8:56) I had heard about different things happening, but didn't get really serious about researching until I moved. (9:01) 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. (9:17) And I thought, this is incredible. (9:18) How come I never knew this?
Kelly (9:20) So I contacted all of them and was trying to see if I would be a candidate for a clinical trial. (9:27) So at first, the first one, one of I would say one of the hospitals I didn't qualify because, you know, all the criteria is different for all the studies, obviously. (9:38) So some, have to have a certain blood type, which I didn't have. (9:41) Others, you know, there are BMI requirements, and things like that. (9:46) I was able to get in touch with the University of Illinois in Chicago.
Kelly (9:50) The first path I tried to go down was the islet cells where they harvest the cells from a cadaver pancreas. (9:57) That didn't work out because we actually had to go through insurance for that. (10:01) That that particular one wasn't even considered a clinical trial. (10:04) Like, they've been doing this
Scott Benner (10:05) Mhmm.
Kelly (10:06) For years. (10:07) And so if your insurance covers the procedure, you can, you know, have this done. (10:11) Fortunately, my, my insurance company told me they don't cover islet cells, and I almost laughed.
Scott Benner (10:16) I was like, oh, of course, you won't cover
Kelly (10:17) a cure. (10:18) I'm like, why would we do that? (10:20) Because my understanding is you leave hospital, and you're essentially not diabetic anymore. (10:25) I mean, it it works that fast. (10:26) Right?
Kelly (10:27) It's it's incredible. (10:29) So, downside, obviously, to doing the cadaver route is you do have to take immunosuppressant drugs, the rest of your life. (10:36) So there is, you know, there are some pros and cons to be weighed there, of course. (10:40) So after that kinda fell apart, I waited, and I was back in touch with the University of Illinois again and learned that they were gonna have another they were gonna actually have a clinical trial opening up in I in August of of this year. (10:56) And I was able to get in touch with the research team, and they said that they thought I might be a good candidate.
Kelly (11:01) So we went out, and I had all kinds of tests done. (11:05) And they said, that I qualified. (11:10) And so I had my transplant surgery on October 14, and what made this different was that this particular study, they took islet cells from pigs. (11:24) So it's porcine islets. (11:26) This has been, effective in primate studies, but we haven't really studied this enough in humans.
Kelly (11:33) I'm actually the second person in The United States to do a porcine eyelid, which is pretty remarkable.
Scott Benner (11:39) It
Kelly (11:41) has been done in other countries. (11:43) I think New Zealand was one of the first. (11:45) It's been done in Argentina, Germany, the list goes on, but it's it's still being studied. (11:50) So this is a, you know, this is an efficacy and safety study. (11:53) So I got a certain amount of porcine islets, and the surgeon believed that in a couple of weeks here, I should start to see some changes in insulin requirements.
Kelly (12:02) So that's very exciting. (12:03) Whether this is going to lead to full insulin independence is still unknown. (12:10) It certainly is a possibility, but we just don't know.
Scott Benner (12:13) So okay. (12:14) Let me ask a couple of questions.
Kelly (12:15) Sure.
Scott Benner (12:17) Me start at the beginning here so I can piece my way through it. (12:19) How long ago did you have the procedure?
Kelly (12:21) On October 14.
Scott Benner (12:22) Okay. (12:23) So that's a month ago.
Kelly (12:24) Yes.
Scott Benner (12:24) Okay. (12:25) And they give you it's pig cells cells from a pig. (12:32) Okay. (12:32) Yes. (12:32) You need anti rejection meds for that?
Kelly (12:34) You do not. (12:35) That's what makes this
Scott Benner (12:36) Why is that?
Kelly (12:37) So different. (12:38) So the cells are encapsulated
Scott Benner (12:40) Oh, okay.
Kelly (12:41) Which you've probably heard
Scott Benner (12:42) of that. (12:43) Right?
Kelly (12:43) Yeah. (12:44) That that's why.
Scott Benner (12:45) So it's in in one of those pouches?
Kelly (12:47) It's actually not in a pouch. (12:49) So this also fascinated me. (12:50) That's what I thought we were gonna do. (12:52) I actually thought they'd be in a pouch. (12:53) They put them in your, Omentum, which I had to Google.
Kelly (12:57) I didn't even know this was a body part that we had. (12:59) Okay? (12:59) So this is a little, like, fatty tissue in the upper abdomen area, and it kinda drapes over your intestines like a curtain or an apron.
Scott Benner (13:08) K.
Kelly (13:10) This area is being utilized for islet cell well, I don't know about cadaver, but certainly for porcine. (13:18) It's a protected area and, rich in blood supply, and, it's it's known to be an area that that I guess, these cells can thrive. (13:28) So that's why they're starting to to do them in the momentum.
Scott Benner (13:30) Okay. (13:32) So they put them in there, and it's been a month. (13:35) Have you have you noticed any difference at all? (13:41) You've probably heard me talk about US Med and how simple it is to reorder with US Med using their email system. (13:48) 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.
Scott Benner (13:52) They don't just randomly call you. (13:53) But I'm set up to be called if I don't respond to the email because I don't trust myself, a 100%. (14:00) So one time, I didn't respond to the email And the phone rings at the house. (14:04) It's like, ring, you know how it works. (14:06) And I picked it up.
Scott Benner (14:07) Was like, hello? (14:07) And it was just the recording. (14:08) It was like, US Med. (14:10) Doesn't actually sound like that, but you know what I'm saying. (14:12) It said, hey, you're, I don't remember exactly what it says.
Scott Benner (14:14) But it's basically like, hey, your order's ready. (14:16) You want us to send it? (14:17) Push this button if you want us to send it. (14:19) Or if you'd like to wait, I think it it lets you put it off, like, a couple of weeks or push this button for that. (14:24) That's pretty much it.
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Kelly (16:05) Not yet. (16:06) But they told me that I shouldn't really see any changes for about six weeks.
Scott Benner (16:11) Six weeks.
Kelly (16:11) And so I to be honest, I haven't seen anything yet. (16:15) So I'm just it's sort of like diabetes as usual. (16:17) Right? (16:18) I haven't seen any change just yet.
Scott Benner (16:20) My gosh. (16:21) But you're the second person. (16:23) So I was gonna say if you talked to anybody else that's had it done, but there was one other person.
Kelly (16:27) One other person, in The US study. (16:30) Yes. (16:30) And if you look at the studies that have happened overseas, they're mixed in terms of success rates. (16:36) Right? (16:36) So, you know and each study was slightly different, so the the goals of each study are are different.
Kelly (16:42) But this clearly is an an area that is still being, well, you know, studied. (16:47) 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
Scott Benner (16:57) Mhmm.
Kelly (16:57) Meals. (16:58) Right? (16:58) Better like, less spikes after eating, things like that. (17:01) So
Scott Benner (17:03) Have there been any changes? (17:04) If I yell suey, will you come running? (17:06) Anything like that? (17:08) Sorry. (17:08) That's a that's a bad pig joke.
Scott Benner (17:11) How long was the procedure? (17:13) How long was it to recover from it?
Kelly (17:15) This was a very easy surgery. (17:17) So it was done, laparoscopically. (17:19) They made four tiny incisions, probably a centimeter, around my abdomen. (17:24) They sort of said, imagine, like, a funnel. (17:26) Right?
Kelly (17:26) They're funneling the cells into your omentum, and, and that was it. (17:31) And I was in the hospital for two days. (17:33) Recovery was very easy. (17:35) I didn't need any pain medicine. (17:36) I may have taken an ibuprofen on, you know, the first day after it was released, but nothing beyond that.
Scott Benner (17:41) Really like that. (17:42) Just easy. (17:42) What's the doctor's name?
Kelly (17:44) So the doctor, the transplant surgeon that did my surgery is doctor D'Coco. (17:50) He was amazing. (17:52) And, really, the entire research team there is amazing. (17:55) I still go in once a week for follow-up care, so they do a lot of blood work. (17:59) They're also doing, like, C peptide tests, right, to see if there's any activity and things like that.
Kelly (18:04) So I'll be going to every other week appointments pretty soon. (18:08) But, yeah, I'll be I'll be followed essentially the rest of my life as part of this study.
Scott Benner (18:12) So gonna say what's your responsibility to the study after that?
Kelly (18:17) So the visits will slow down a little bit. (18:20) You know, maybe it'll be once a month for a while, and then eventually, think it may be even twice a year or something like that. (18:26) But, yes, I will be closely monitored for the rest of my life.
Scott Benner (18:30) Okay. (18:31) Can you tell me have you given thought to if you wake up six weeks in, eight weeks in, twelve weeks in, there's no change. (18:39) Do you think you'll be disappointed, or do you think you'll have just been happy to help?
Kelly (18:43) 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 gonna work fully. (18:53) My hope is that maybe this will lead to, you know, more opportunities for other type ones. (19:00) I mean, certainly in the cell therapy space, there's so much being done. (19:03) It's incredible. (19:04) 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.
Kelly (19:15) So there's a lot happening. (19:17) I met I also met I don't know if you've heard of doctor Oberholzer. (19:22) He's a Swiss transplant surgeon who's been heavily involved in the University of Illinois in Chicago. (19:28) He's the one that started the diabetes I'm sorry, the Chicago Diabetes Project, which you may have heard of.
Scott Benner (19:33) I have. (19:33) Yeah.
Kelly (19:34) Yeah. (19:34) He did his first eyelid transplant in 1996, and I've read a lot about him. (19:39) I've just been so amazed by his work, which has been solely focused on
Scott Benner (19:44) a
Kelly (19:44) cure, like finding a cure, developing cures. (19:47) So this is his his whole life's work. (19:49) 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. (19:58) I was like, wow. (19:59) You're here.
Kelly (20:00) It's like, I had no idea he was gonna be there. (20:02) So it was wonderful to meet him and talk to him about these procedures and just all that is being done in the islet space. (20:09) It's it's really amazing. (20:11) So I I do believe that there'll be a cure for us in the near future. (20:14) I know a lot of people think that's just not that'll never happen.
Kelly (20:17) But these cell based therapies, there's so much happening right now in this space that I I think it will be available to most of us in the future.
Scott Benner (20:24) No. (20:24) That'd be crazy. (20:25) Yeah. (20:27) What what did you have to do to qualify? (20:29) Is there anything that would have disqualified you?
Kelly (20:32) Yes. (20:33) So each study has, you know, slightly different criteria. (20:36) This one, you had to meet certain things. (20:38) And I I I don't recall the entire list, but I know a big one was, like, hypoglycemia. (20:45) 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.
Kelly (20:59) I could be, you know, out doing some activity, and maybe I don't recognize this. (21:04) I don't feel it right right away. (21:06) I'm waiting like, have to wait for the CGM to alert me.
Scott Benner (21:09) Mhmm.
Kelly (21:09) So that's certainly not a a great thing. (21:11) There's some other factors, like, you have to make you have to be a certain weight, you know, and BMI is a factor in these studies, and a couple of other things. (21:21) But but each each one, like I said, has has slightly different criteria.
Scott Benner (21:25) Yeah. (21:26) Okay. (21:26) Alright. (21:27) What made you wanna come on the podcast, actually? (21:29) Like, that that's interesting because you you scheduled this, and you don't know what the outcome's gonna be yet.
Scott Benner (21:35) So Yeah. (21:35) What's what's your hope in in talking to people?
Kelly (21:37) Well, what I was hoping to to share is that there is a lot there's a lot of work being done right now trying to develop a cure for diabetes. (21:46) It's been and it's been going on for many, many years, and I I just think that there are a lot of type ones like me out there who thought, I'm gonna have this forever. (21:54) You know? (21:55) Yes. (21:55) There's studies being done, but that's never going to apply to me.
Kelly (21:59) It's not something I'm ever gonna be able to participate in. (22:01) And I would encourage type ones to really especially if you live in close to a big city like Chicago or and I'm and, I mean, these are being done all over the country. (22:10) University of Miami does islets. (22:12) I believe the University of Virginia does islets. (22:14) So this is happening all over the country, I think even UCLA.
Kelly (22:18) Just do your research. (22:20) And if it sounds like something you'd be interested in participating in and maybe you'd have the opportunity for a little bit of a break from diabetes, you know, you'd be surprised. (22:30) I didn't think that I was gonna qualify for any of these. (22:33) I do feel fortunate that I was able to get into one. (22:36) And even if it, know, let's say, only works 50% of the expectation.
Kelly (22:41) Right? (22:41) Like, maybe I don't have full insulin independence, but even to get kind of that break from, okay. (22:46) I can eat a meal, I don't
Scott Benner (22:47) have to worry about where am I gonna be two hours from now or three hours from now.
Kelly (22:51) Right? (22:52) Like, just having, just a little bit of a break from type one would be absolutely amazing for me.
Scott Benner (22:57) Let's talk about that a little bit. (22:59) After nearly four decades of type one diabetes, like right? (23:02) 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 some pig cells in here and see if that doesn't help me? (23:13) You know what I mean? (23:13) Like
Kelly (23:13) Like, what encouraged me to go this route?
Scott Benner (23:16) Yeah. (23:17) What's the long term implications that make you think of because there are people out there who've done transplants. (23:22) Right? (23:23) Like, often they're in in poor health and maybe makes more sense. (23:26) But even when you tell somebody, like, you have to go on immunosuppressant, like, that's a big thing.
Kelly (23:31) It
Scott Benner (23:31) is. (23:31) And to have somebody hear all the possible side effects and problems with being on an immunosuppressant and then them still say, like, yeah. (23:38) Let's do it. (23:39) 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. (23:46) I'm wondering Yeah.
Scott Benner (23:47) About that for you.
Kelly (23:49) I think for me, it's just there is a certain level of exhaustion with living with this. (23:53) Right? (23:54) I wanna be able to just go on the, you know, Peloton and not have to worry about, am I gonna drop low, or am I gonna have to eat before, you know, I get on the bike? (24:03) And it's just all of those decisions that you're making all day long can be so exhausting. (24:08) And I understand why people, you know, say they have diabetes burnout.
Kelly (24:12) I think that's a very real thing for a lot of us, especially when we've had it for, you know, in my case, nearly four decades.
Scott Benner (24:17) For sure.
Kelly (24:18) You know, I'm in great health. (24:19) I've had no complications from diabetes. (24:21) Thank goodness. (24:22) But but it's just it's just one of those things where it's it's It's enough already. (24:26) Full time job.
Scott Benner (24:27) Yeah. (24:27) Like, that's enough of this. (24:29) I'm good.
Kelly (24:29) Yes. (24:30) It's like, sign me up for one of these, you know, options. (24:33) Let's see if this works. (24:35) I I'll be honest. (24:36) I think I probably would have gone down the route too 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.
Scott Benner (24:48) You know? (24:49) You're you're just desirous of anything happening that's different. (24:52) Seriously. (24:53) Yeah. (24:53) You're just like like, okay.
Scott Benner (24:54) I'm ready for something different now. (24:55) Let let's be done. (24:56) Yeah. (24:56) Yeah. (24:56) So would you try something again?
Scott Benner (24:58) Like, say this doesn't work. (25:00) Would and they called you six months from now and they're like, hey. (25:02) We got a, I don't know, dog sells this time. (25:05) Let's go again. (25:06) Would you be like, like, right on.
Scott Benner (25:07) Let's go.
Kelly (25:08) Yeah. (25:09) I think if I absolutely would consider it again. (25:13) I mean, in this case, I felt like the worst case scenario with this procedure is that it just doesn't work. (25:17) Right? (25:17) There were no I didn't have to you know, you always wanna weigh the the risks and the benefits of these things, of course.
Kelly (25:25) But, yeah, I think if it's the right procedure, as I felt this one was, I probably would consider it again.
Scott Benner (25:31) Yeah. (25:31) Plus that curly tail is not that bad. (25:34) I
Kelly (25:36) my kids would have loved probably if I dressed up as a a pig this year
Scott Benner (25:40) for Halloween. (25:41) Are they are they how old are your kids?
Kelly (25:43) 11 and four.
Scott Benner (25:45) Oh, 11 and four? (25:46) Yeah. (25:47) Look at you. (25:47) You had one when you got married and one after a wedding where you got drunk. (25:52) What happened there?
Scott Benner (25:52) Was it No.
Kelly (25:53) No? (25:53) You know, after my first, I I just thought I was good with one child. (25:58) I really didn't think I was gonna have any more kids. (26:01) And then, you know, after they maybe she was around five years old. (26:05) I think you forget how hard it is in the beginning.
Scott Benner (26:08) I haven't forgotten.
Kelly (26:09) You're like,
Scott Benner (26:09) you know, I
Kelly (26:09) can do this again.
Scott Benner (26:11) I haven't forgotten. (26:12) I have a I have a kid with diabetes. (26:14) I I I'm I'm aware every day. (26:17) She somebody said to me recently, like, you know, what is it you're waiting for? (26:21) And I was like, for her to get to 25.
Scott Benner (26:22) I because it's funny that you said 25 because I I mean, all the stuff you've just talked about. (26:27) Right? (26:27) That happens to everybody. (26:29) Happens to my daughter. (26:30) It's gonna happen to if you're listening, it's gonna happen to your kid.
Scott Benner (26:33) 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. (26:42) And Yeah. (26:43) You know, and, it's just there's parts of diabetes that Arden just skates through. (26:48) And there's Yes. (26:49) And there's parts of it and I and I don't even know if I should say diabetes, like autoimmune.
Scott Benner (26:53) Like and there's parts of it that, like, are hard for. (26:56) And Absolutely. (26:57) And and, you know, and it just it's I don't know what to do. (27:00) Like, you know, you so you try to be supportive, but people aren't always ready for that. (27:04) You you know, you can't force people to you can't force people to do anything.
Scott Benner (27:09) Mhmm. (27:09) You know, you it's easier when they're kids because you say, like, here, do the thing and I'm taller than you, so do it. (27:15) And they're like, right on. (27:17) And then they just do it. (27:18) Right?
Scott Benner (27:18) But people start to grow and, you know, they their own struggles and and their own mindset and suddenly, you're you're just an you're an opinion. (27:27) You're not a Mhmm. (27:29) You're not the end all be all anymore. (27:31) So anyway, yeah, I say keep them little because they're easier that way.
Kelly (27:34) And I think maybe that was one benefit to getting type one as a child. (27:38) 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. (27:46) Right? (27:46) I've had this for so, so long. (27:49) 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.
Scott Benner (28:00) Well, sure. (28:01) Because you're sure you don't have an experience to know it another way, but you can imagine it another way.
Kelly (28:06) Absolutely.
Scott Benner (28:06) You look at other people who don't have it and you go, that seems better.
Kelly (28:09) That would be nice.
Scott Benner (28:10) Yeah. (28:10) Yeah. (28:10) Right. (28:11) Yeah. (28:12) And your husband did your husband have any autoimmune issues or anything going on with him?
Kelly (28:15) None. (28:16) And there's really none in my family either.
Scott Benner (28:18) Really?
Kelly (28:18) There I don't have any cousins or siblings. (28:22) No one has type one, so that's just a mystery. (28:25) Celiac. (28:25) No celiac.
Scott Benner (28:27) Eczema. (28:29) No. (28:29) The the Michael Jackson thing, vitiligo. (28:32) No. (28:32) Raynaud's, cold hands.
Scott Benner (28:33) Anybody have RA? (28:35) No. (28:36) I'll be damned. (28:36) I know. (28:37) You just got super wonder.
Scott Benner (28:39) So what
Kelly (28:39) was the trigger? (28:40) Was it a virus? (28:41) You know, some environmental factor? (28:43) You it will never know. (28:45) Right?
Scott Benner (28:45) Did you have a virus before you were diagnosed?
Kelly (28:47) I certainly don't remember if I did.
Scott Benner (28:50) Yeah. (28:50) It would be like a nothing before you had diabetes, nobody paid attention to health. (28:54) You're either sick or you were getting better or you're Yes. (28:56) Or you weren't sick. (28:57) Nobody was, like, tracking anybody's health in this in the eighties.
Scott Benner (29:00) Yeah. (29:01) Yeah.
Kelly (29:01) I don't I certainly don't remember Yeah. (29:03) What could you know, a virus or what else could have possibly triggered it.
Scott Benner (29:07) Yeah. (29:07) No. (29:07) I hear you. (29:08) Okay. (29:09) So oh, Do you ever think about testing your kids for autoantibodies?
Kelly (29:15) I do. (29:16) I've done the trial net. (29:18) In fact, I did it when they were both two, and I just ordered the kits again. (29:23) They there was a period of time, I guess, where you could not get the kits. (29:27) I think there was maybe had something to do with fund the lack of funding in this study, but now they're available again.
Scott Benner (29:32) Yeah.
Kelly (29:32) So I was able to order them, and I'll do another. (29:34) Thankfully, they were negative when they were two, so I'm certainly hopeful they'll all you know, be negative again. (29:40) But yes. (29:41) I I think I'll probably always do trial med as long as I'm, you know, able to I don't I don't know how how often they recommend we do it. (29:49) That'll have to I'll have to look up again, but they they certainly will were willing to send the kits again.
Kelly (29:54) So I thought, okay. (29:55) Great. (29:55) Let's do it.
Scott Benner (29:56) Very nice. (29:56) So I'm glad you get a little peace of mind from that. (29:58) That's nice. (29:58) Yeah. (29:59) How do you manage right now?
Scott Benner (30:00) Are you a pump, CGM, MDI? (30:03) What do do?
Kelly (30:03) Omnipod five, and I'm using the Dexcom g six. (30:09) The hospital actually gave me a g seven, so the hospital and their research partner who was in Japan is so it's like a blinded CGM. (30:19) I can't see
Scott Benner (30:19) Right. (30:20) Right.
Kelly (30:20) The numbers or anything like that, but I am carrying their device around and It's recording. (30:25) Seven.
Scott Benner (30:25) Yeah. (30:26) And it's recording data for them. (30:27) They'll download it
Kelly (30:28) later. (30:28) Right.
Scott Benner (30:29) Yeah. (30:29) Yeah. (30:29) I remember those. (30:30) That's how you used to have to get a CGM, by the way. (30:32) Oh.
Scott Benner (30:33) 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.
Kelly (30:38) Oh my gosh. (30:39) Wow. (30:39) I remember that.
Scott Benner (30:40) Yeah. (30:40) That was that was fun. (30:41) We did that one, you know, where you're just, like, hoping somebody gets low so that you'll get an excuse to get deceased.
Kelly (30:48) Qualify?
Scott Benner (30:49) I mean, really. (30:50) And that's a horrible feeling. (30:51) 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.
Kelly (30:56) Yeah.
Scott Benner (30:56) Obviously, we didn't make her low on purpose, but, like, it was like
Kelly (30:59) No. (31:00) These tools are so essential. (31:01) They they should never be a it's a shame, and I I won't go all political on you, but it's like every diabetic should be able to access the best technology that there is out there for this. (31:13) And I don't know how I lived so many years without a CGM.
Scott Benner (31:15) Well, obviously
Kelly (31:16) I it's really a miracle.
Scott Benner (31:17) How long have you had CGM and an algorithm? (31:19) Like, I mean
Kelly (31:20) With the algorithm, not that long. (31:22) Because before the Omnipod five came out, I was using whatever the first edition Omnipod was. (31:29) I didn't have the dash.
Scott Benner (31:31) Oh, you had the you had the old the original pod? (31:33) You went from the original pod to the five?
Kelly (31:35) Yes. (31:35) Really?
Scott Benner (31:36) Yeah. (31:36) What was that called?
Kelly (31:38) I forget what it was called. (31:39) Someone asked me this the other day. (31:41) I can't remember. (31:41) But I had that for probably a decade.
Scott Benner (31:44) Yeah. (31:46) Yeah. (31:46) How was your outcomes during that decade?
Kelly (31:49) You know what's funny? (31:51) My a one c was better on the old school one than it is on the Omnipod five, interestingly enough.
Scott Benner (31:57) Were you more focused on it?
Kelly (31:59) I wish I could tell you. (32:00) I think if there is a downside to the Omnipod five, in my opinion, is I do not like there are times where I think it does not correctly estimate or or predict that you're going low, and it will cut me off for, I think, far too long. (32:13) And then that sends you back up to, like, the January or January sometimes. (32:17) That particular feature is not my favorite.
Scott Benner (32:20) Okay.
Kelly (32:21) I didn't have that problem before. (32:23) You know, I would bolus and wait the two, three hours, and if I needed to correct again, I would. (32:28) But, yeah, I I think my my a one c has certainly been higher on the fives, which I bet I don't love.
Scott Benner (32:33) Okay. (32:34) Well, I think they're working on another version of it right now. (32:38) So I think it's in the testing phase.
Kelly (32:40) God. (32:40) That would be great.
Scott Benner (32:41) Yeah. (32:41) Like a like a two point o kind of a feeling. (32:44) Yeah. (32:44) But I was wondering, like, because it's telling you it's taking care of things now, are you not looking in on it as much and helping it? (32:53) Do you know what I mean?
Scott Benner (32:54) Like, do you ever just think, well, I probably need more insulin here. (32:56) I'll I'll bolus again, or do you just wait for it?
Kelly (32:59) I admit I am guilty of overriding some of the decisions that the vibe is making. (33:06) Mhmm. (33:07) And I love my endocrinologist. (33:08) He's amazing. (33:09) It sounds like you just have to trust it.
Kelly (33:11) You have to give it give it more time and but I I do. (33:14) I have moments where I'm like, okay. (33:16) I'm tired of this. (33:17) I'm tired of waiting. (33:18) I'm just gonna Yeah.
Kelly (33:19) Take a half unit or a unit and see where we land.
Scott Benner (33:21) I think you should, first of all. (33:22) But, like Yeah. (33:23) You know, at the same time, I was wondering if you weren't doing that. (33:26) But you are. (33:26) You're Yeah.
Scott Benner (33:27) I understand. (33:27) Involved. (33:28) Yeah. (33:28) Yeah.
Kelly (33:28) Manipulated at times. (33:30) Yeah.
Scott Benner (33:30) Is it easier? (33:32) Like, is it enough to take away whatever made you decide to do the cell transplant? (33:39) Like, you know, if if it gets better and better, you know, if these are
Kelly (33:42) Oh, yeah. (33:42) If it gets better, and I think there's a possibility. (33:45) So let's say in a month, I start seeing some changed insulin requirements, you know, meaning and and this is what's also being closely tracked by the hospital. (33:52) We go over how much you know, what is your daily insulin? (33:56) We'll look at it week to week because that's how we're gonna be able to tell if things are changing.
Kelly (34:00) Am I taking less insulin? (34:01) Right? (34:02) Are we seeing anything on a C peptide test? (34:04) Like, these sorts of things. (34:06) 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.
Kelly (34:14) So maybe the Omnipod five will will work out even better for me in that situation.
Scott Benner (34:19) Right.
Kelly (34:19) But, yeah, time will will tell. (34:21) You know, I'll 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. (34:35) So if that's the case, we're talking about two weeks from now.
Scott Benner (34:37) Two more weeks.
Kelly (34:38) So I'm excited to see if that's the case. (34:41) He certainly seemed confident that I was gonna see some level of change.
Scott Benner (34:44) So Yeah.
Kelly (34:45) That gives me hope. (34:46) He's also amazing, and I would recommend that every type one look him up and get to know him and look at the Chicago Diabetes Project. (34:53) His name is doctor Jose, Ober Bolzer. (34:56) He's just an amazing human being. (34:58) His entire life is is dedicated, towards developing cures.
Kelly (35:03) He runs in the Chicago, marathon every single year. (35:07) They raise money, and that money goes directly to Cure Focus Research. (35:11) 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. (35:19) He just walked in my room, I was like, wow. (35:22) This is I had no idea that he was there, that he would even stop by to see me.
Kelly (35:26) So I was really, I was really taken aback by that.
Scott Benner (35:29) Oh, I don't know. (35:29) You're probably pretty famous in this. (35:31) You're the second person that did it with him.
Kelly (35:33) That was a really special, surprise, you know, to see him. (35:37) Felt, you know He probably opened
Scott Benner (35:39) that he probably opened that door and was like, oh, she's still alive. (35:41) Good. (35:41) That's awesome. (35:43) Oh, god.
Kelly (35:45) Yeah. (35:46) No. (35:46) I definitely feel a deep sense of gratitude to him and 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.
Scott Benner (35:57) Did they give you any idea did they say, like, listen. (35:59) If this doesn't work, this is why it doesn't work. (36:02) Like, is there how much of this do they understand? (36:04) Or do you think they're just like, I wonder what's gonna happen now?
Kelly (36:07) Well, you know, they're so they there is data, from the studies that were done in other countries. (36:14) The first one, I think, was New Zealand. (36:16) So this is this was first done, I believe, in 2014.
Scott Benner (36:19) Mhmm.
Kelly (36:20) You know, they work with their their research partners in New Zealand and in Japan and probably other places. (36:25) So I know that this has been well studied. (36:27) It just hadn't hadn't been approved. (36:30) You know, they had to go through FDA approvals and what have you to be able to do this in The United States. (36:35) So this is the first time it's being done here.
Kelly (36:38) But, you know, it has been done elsewhere. (36:41) So it's and it's still being studied, so we really don't know.
Scott Benner (36:44) Do you know if it's ramping up? (36:45) Are they gonna start doing more people or more cells?
Kelly (36:49) Clinical trial is still open. (36:50) So as far as I understand, people could apply. (36:54) I'm not sure how many patients they're gonna recruit for this, and my understanding is that there's two phases. (36:59) So I'm in phase one, and we got a certain amount of islets. (37:02) Phase two, they're supposed to those patients are gonna get a little bit more islets.
Kelly (37:06) So, you know, this is all part of testing the safety and efficacy of these cells. (37:12) So I think this the second round of patients will get a, you know, a bigger batch of islets.
Scott Benner (37:17) Does the, the pig get the liver? (37:19) Do they
Kelly (37:20) So this is the part that I admit makes me sad.
Scott Benner (37:23) Oh, he's he's chop he has pork chops now? (37:25) Is that right?
Kelly (37:25) You know, because I I don't know, and don't quote me on this, but I had heard that somewhere between twelve and fifteen baby pigs are taken for one
Scott Benner (37:34) transplant. (37:34) So,
Kelly (37:35) you know,
Scott Benner (37:35) I know.
Kelly (37:36) And I do I I have a soft shopper animal, so, of course, it makes me feel bad. (37:40) And part of me is, like, I really wanna get rid of diabetes. (37:42) So I'm gonna touch on that issue right now. (37:45) Kelly's
Scott Benner (37:46) like, I could alright. (37:47) I'll do it. (37:48) She's like, I don't wanna kill him, but I'm okay with it. (37:50) I just Yeah.
Kelly (37:51) I know. (37:52) It took me a while to accept that this is what I this is the road we're we're taking. (37:56) Okay?
Scott Benner (37:56) Do you have any idea how they came up with pigs? (37:59) Like, why why pigs?
Kelly (38:00) Well, I know that that we have used pigs for other things. (38:05) You know, they do, heart valve replacements.
Scott Benner (38:07) Yeah. (38:07) No. (38:07) I just didn't know if
Kelly (38:08) they Yeah.
Scott Benner (38:09) Like, told you I you know what? (38:10) The 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? (38:15) Whatever. (38:16) I'm not gonna ask a ton of questions here. (38:18) Like, let's go.
Scott Benner (38:19) Like, really?
Kelly (38:20) There may be some truths.
Scott Benner (38:22) Oh, no. (38:22) No. (38:22) I heard it. (38:23) Yeah. (38:23) You heard it in your voice a couple times.
Scott Benner (38:24) I heard in your voice at one point because you said something about, like, I had to look it up. (38:29) It it was about the omentum. (38:30) You're like
Kelly (38:30) The omentum. (38:31) I didn't even know we had that.
Scott Benner (38:33) You sat in a room and someone was like, we're gonna put some slices in you and stick some pig cells in your omentum. (38:37) And you were like, rock and roll. (38:38) Let's do it. (38:40) Sign me up. (38:41) I feel like if they would have said, we're gonna cut off your big toes and stick them in your ears, and it might lower your insulin needs, you would have been like, I'm okay.
Scott Benner (38:50) Yeah. (38:51) Tell you. (38:51) They're I
Kelly (38:51) would cons they're definitely I would consider a lot at this point.
Scott Benner (38:54) But that's the that's the part I still can't I don't feel like I've dug into. (38:58) I don't feel like I've gotten to it yet. (38:59) Like, why why? (39:01) Like, why do you feel that
Kelly (39:03) Why you wanna lose tabs?
Scott Benner (39:04) Great. (39:04) Aside of the obvious idea that I don't want you to have type one diabetes, and you don't want that, and I don't want my daughter to have like that. (39:10) That aside, but there's something fun you've been doing it for four decades. (39:15) Like, there's
Kelly (39:15) something burnout. (39:16) You know? (39:17) You're tired you're tired of it. (39:18) I'm tired of making many decisions all day long about what to eat, how much insulin does it take. (39:24) Okay.
Kelly (39:24) I wanna exercise now. (39:25) But if I lift weights, I'm gonna go high. (39:27) If I do cardio, I'm gonna go low. (39:29) Do I need to eat a snack before this? (39:30) Does that have do I have to accompany that with protein to keep the blood sugar stable?
Kelly (39:34) It's like all those many decisions are just so exhausting all day long.
Scott Benner (39:37) Okay. (39:37) It's just you've done it one too many times.
Kelly (39:40) Oh, yeah.
Scott Benner (39:40) Like but it's the repetition of something. (39:43) Right? (39:43) Like, it just
Kelly (39:43) Of course. (39:44) It's the repetition. (39:45) And I just go back to, you know, wouldn't it be great to just have this burden, you know, lifted? (39:50) It's like it is a burden. (39:52) It's it's another, you know, you have a full time job.
Kelly (39:55) You're a mom. (39:56) And then, you know, I feel like diabetes is often your third, you know, full time job.
Scott Benner (40:00) Right. (40:00) Right. (40:00) Right.
Kelly (40:01) Really is. (40:01) And it's
Scott Benner (40:02) I hear it. (40:03) I hear you.
Kelly (40:03) And look. (40:04) We have technology that is amazing. (40:06) Thank god. (40:06) We're not where I was in the eighties and nineties with nothing, right, to manage us. (40:10) We have great tools now, which is wonderful.
Scott Benner (40:12) Yeah.
Kelly (40:13) But they certainly, you know, don't replace
Scott Benner (40:17) Yeah. (40:17) A normal life. (40:18) Just a regular life where you don't have to, like, think about this stuff. (40:21) So
Kelly (40:21) Yes.
Scott Benner (40:22) Dig into your personality for a second because I just got done recording with a lady who's I I asked her a similar question from a different perspective because she's just one of those people who's like, no. (40:31) It's all fine. (40:32) I'm good. (40:33) Like, you know what I mean? (40:33) Like, she's had it, like, fifteen years longer than you, and she's just and I I I as I spoke to her, was like, is that your personality?
Scott Benner (40:41) Have you always been upbeat like this, or do things not bother you? (40:44) Like, that guy so my question back to you is is, like, does this make sense with your personality, or is it just such a thing that's overpowering who you are even? (40:52) And you're just like, I have to get rid of this somehow.
Kelly (40:55) Oh, that's a tough one. (40:57) I just think I there's a part of me that has this desire to continue to pursue options. (41:03) So if there are options out there and then 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. (41:13) But to me, I felt like it still would be better than just the daily day to day, you know, management of diabetes. (41:20) I was really willing to go down that road.
Scott Benner (41:22) Part of this then for you is just a desire to continue looking. (41:27) Yeah. (41:28) Okay.
Kelly (41:28) Yeah. (41:28) And granted, I don't know what Good. (41:30) I'll be able to do in the future. (41:31) Right? (41:31) This I may not be able to I I don't know what will happen, let's say, a year or two years from now.
Kelly (41:36) 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? (41:42) I'm not really sure what the answer is there yet.
Scott Benner (41:45) Mhmm.
Kelly (41:46) But I certainly think I would be open to continuing to pursue cell based therapies. (41:51) You know, we they call these functional cures. (41:53) Right? (41:53) Because it's never gonna restart your pancreas. (41:56) That's never that's never gonna happen.
Kelly (41:57) 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.
Scott Benner (42:08) Yeah. (42:08) I don't well, I'll tell you, like, I wonder when you said it's never gonna happen like that. (42:12) I wonder how it is gonna happen because things that seem disconnected now but maybe aren't completely. (42:19) Like, I I I witnessed a person going to GLP recently. (42:22) He doesn't have diabetes.
Scott Benner (42:23) Right? (42:23) But, like, just look at metabolically what happened to this person. (42:27) So much inflammation left their body and so many different impacts of inflammation. (42:31) Then you see type ones who take it who, you know, have a decrease in their insulin needs. (42:35) You know, like Yes.
Scott Benner (42:36) And then I think back to twenty years ago when I had some researcher on and kinda wondering out loud, are those beta cells in my pancreas, are they are they really gone? (42:47) Are they ruined? (42:48) Or is there just so much I remember these words. (42:50) There's there's just so much inflammation in there that they can't move. (42:53) They can't do what they're supposed to do.
Scott Benner (42:55) And and that's one of the things that somebody's been studying for a while. (42:58) Like, is it just all, like is it your immune system attacking? (43:03) Like, I don't know. (43:03) Like, I just wonder, like, is there a cocktail of things, or are you right? (43:07) Is it you have an autoimmune response.
Scott Benner (43:09) It is just too harsh. (43:11) Even if we could magically flip those beta cells back on, your immune system would come back in and be like, oh, no.
Kelly (43:16) Would come
Scott Benner (43:16) back and
Kelly (43:17) attack it.
Scott Benner (43:18) Yeah. (43:18) And grab them again. (43:19) Like, is this more about autoimmunity than it is about the pancreas? (43:23) Like, you know, I don't like I
Kelly (43:25) think it's all of that. (43:26) Sure.
Scott Benner (43:26) Yeah. (43:26) It's so much of it. (43:27) Right? (43:27) And and in the meantime, good people, like the ones you're dealing with, they're like, I'm gonna take this piece of it here and focus on this piece right here. (43:35) Mhmm.
Scott Benner (43:35) You know? (43:35) 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. (43:44) But after we find out where it is. (43:45) Right? (43:45) And we do this and that fixed it, then who the hell cares?
Kelly (43:50) Right.
Scott Benner (43:50) Really. (43:51) You know? (43:51) Like, you you still have other problems. (43:53) You still have an overactive immune system. (43:55) Like you said that if you take all this off your plate, then you just be back to having, like, regular people problems.
Kelly (44:01) Right.
Scott Benner (44:01) Seriously. (44:02) Without all the math and the worry and the low blood sugars and every other thing that comes with it.
Kelly (44:08) Yes. (44:08) No. (44:09) Absolutely. (44:10) And these cells, I mean, they're they're sort of, you know, in in a baby phase right now. (44:15) They're it's only been, what, four weeks.
Scott Benner (44:18) Yeah.
Kelly (44:18) So in the first few weeks, they're trying to survive, and they have to connect to your blood supply. (44:24) And so they're they're busy at work, so I've been told. (44:28) Mhmm.
Scott Benner (44:28) It's awesome.
Kelly (44:29) And if engraftment, you know, succeeds, they'll be able to produce a small, you know, some insulin. (44:34) So I don't know.
Scott Benner (44:35) Question for you.
Kelly (44:36) Yeah.
Scott Benner (44:37) If it starts to work. (44:38) Right? (44:38) Like, I always wake up in a couple days, you know, fourteen days from now, and you're like, hey. (44:43) I've got low overnight for no real reason. (44:45) I'm gonna turn my basal down.
Scott Benner (44:46) Like or, you know, like, that kind of thing happens, you start noticing you use less insulin. (44:50) Is there any reason you can't go back and go, hey, doc. (44:52) Why don't you shove some more of them in there? (44:54) Right?
Kelly (44:56) Well, unfortunately, I don't think it will work that way for me. (45:00) So their research partner I think the study was funded by a Japanese pharmaceutical company. (45:05) So they're obviously heavily involved in this. (45:08) And
Scott Benner (45:08) Oh, they need to track your progress.
Kelly (45:09) And I think even my blood, my the blood tests that I take every week get sent over to Japan for additional testing. (45:16) So it's kinda fascinating, but, yeah, they they certainly are in control of some of the decisions here. (45:22) So I don't know that they'll let me just go for round two right away.
Scott Benner (45:25) I interviewed a lady one time who did one of those, I think, the Vertex pouch or one of those pouches. (45:29) Yes. (45:30) So very nice. (45:31) And it was a blind study, so she didn't know if she you know, they didn't tell her if they act they actually opened her up, put a pouch in, didn't tell her if it had the cells in or not. (45:37) Oh
Kelly (45:38) my gosh. (45:38) Yeah.
Scott Benner (45:38) Right? (45:39) So she's out in front trying to help everybody out, which is awesome. (45:42) But she starts seeing a real decrease in her needs, her insulin needs. (45:45) But then they took the pouch back out. (45:47) And I told her, was like, I would have left the country.
Scott Benner (45:49) I would have been like, hey. (45:50) I know I said I wanted to be part of this, but you screw off. (45:53) I'm I'm I'm out of here. (45:54) You're not taking my pouch back. (45:56) Yeah.
Scott Benner (45:56) Ain't that crazy? (45:57) Because they had to take it back out again because that was the part in the study they were up to.
Kelly (46:01) Oh, see. (46:01) I don't know that I could do that.
Scott Benner (46:03) Yeah. (46:03) No. (46:03) I would I I told her I I would've I would've went to Mexico. (46:06) I would've been like, goodbye.
Kelly (46:07) There's no way.
Scott Benner (46:07) Yeah. (46:08) Sorry. (46:08) I'm leaving. (46:09) You're not taking my pouch. (46:10) Right.
Scott Benner (46:11) Yeah. (46:11) Right. (46:11) But I just think, like, in that same vein, you were nice enough to jump into this at this point. (46:18) And it would I'd feel personally sad for you if, like, two years from now, they realized they should've just given you, like, 18 more ounces of, you know, of 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. (46:31) So thank you from everybody listening.
Scott Benner (46:33) I we really appreciate that you did this. (46:35) It's awesome.
Kelly (46:36) Yeah. (46:36) No. (46:36) Absolutely. (46:37) I hope that it's you know, and 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.
Scott Benner (46:50) Wouldn't it be awesome? (46:51) I mean, an outpatient procedure that you basically took an Advil to, like, get through the discomfort of it.
Kelly (46:58) Very easy surgery, really. (46:59) Yeah. (47:00) Were help. (47:00) Surgeries in my life, this was easy.
Scott Benner (47:02) If that were to help something or even be the beginning of something, it would just Yes. (47:05) It would just be incredible.
Kelly (47:07) Absolutely.
Scott Benner (47:08) When you think about the future with diabetes, if, let's say, you have a a decreased need and it does take away some of your decision making that has to happen during the day. (47:18) Can you imagine other ways to help yourself? (47:21) 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?
Kelly (47:28) No. (47:29) And I think that's a great question. (47:31) I I it's just always there. (47:34) You know, in some days, maybe it's you feel it more than others, but I think I struggle the most with you wanna go out. (47:42) There's certain meals that I know are not gonna be great for blood sugar management.
Kelly (47:47) 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 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. (48:03) You know? (48:03) I think just being able to remove all of that would be amazing.
Scott Benner (48:07) Talk about the guilt for a second. (48:08) What do you mean the guilt?
Kelly (48:09) I guess I'll give you just an example. (48:11) Like, if you're gonna go out to dinner with your family. (48:13) Right? (48:13) And so and we all know carb counting is it's it's not an exact science. (48:17) So there are certain meals I think I generally would avoid eating because I know they're going to be difficult, You know?
Kelly (48:24) No matter how well I do with the carb counting or pre bolusing, it just sometimes doesn't work. (48:29) Right? (48:29) Yeah. (48:30) You know, that's just another thing I think that frustrates me with them with diabetes is you just that's what happened to it. (48:35) Like, no.
Kelly (48:35) I'm not gonna do that or, you know, not gonna have ice cream with the kids. (48:39) We, you know, we take the kids out for ice cream. (48:40) I never get it. (48:41) Never. (48:42) Because I don't wanna deal with it.
Scott Benner (48:43) Yeah. (48:43) But the guilt is that you're not enjoying the ice cream with the kids in that scenario.
Kelly (48:49) Maybe the guilt is if you if you do partake. (48:52) Yeah. (48:52) 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. (48:59) I think sometimes I do. (49:00) It's like, oh, why did I eat that?
Kelly (49:01) I knew I shouldn't have had that. (49:03) You know? (49:04) Like, some birthday cake, like, at someone's house. (49:06) That's a good example. (49:06) I had birthday cake recently, and I'm like, oh, just a tiny piece.
Kelly (49:09) It'll be fine. (49:10) No. (49:10) It wasn't fine.
Scott Benner (49:12) So the the guilt can come in a lot of different ways. (49:14) Like, so you could you could feel guilty for not partaking with your family. (49:17) You could feel guilty after your blood sugar goes up later. (49:21) 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.
Kelly (49:31) Yeah. (49:31) No. (49:31) That's all that's that's true.
Scott Benner (49:33) Right? (49:33) Yeah. (49:34) Yes. (49:34) And I'm missing some examples too, would imagine.
Kelly (49:37) No. (49:38) I think we definitely deal with all of that as type ones. (49:41) I I think that's very accurate.
Scott Benner (49:43) Every day doesn't stop.
Kelly (49:44) Yeah. (49:45) It it never stops. (49:46) It's always there.
Scott Benner (49:47) Jeez. (49:48) I I'm sorry. (49:49) I just as my daughter gets older, I think more and more about these parts of it. (49:53) You know?
Kelly (49:54) Well, you know, I I it's and it's hard. (49:57) Look. (49:57) 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. (50:07) Right? (50:08) We don't we don't wanna have problems.
Kelly (50:09) And so I'm thankful, knock on wood, that after three years, I don't have any health issues and I was able to have two successful pregnancies. (50:17) 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 gonna get through this? (50:25) And, like, what's gonna happen when they get older? (50:27) And it's like, oh, I'm like, you can do it. (50:29) It's it's not gonna be easy.
Kelly (50:31) Like, they can do every everything that a, you know, a nondiabetic, can do, whether it's, you know, certain sports. (50:38) We we can do all of it. (50:40) It's just that it it takes a it just takes a little more focus. (50:43) We've gotta, 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? (50:51) No.
Scott Benner (50:51) You can do it. (50:52) 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. (51:00) Yeah. (51:01) You know? (51:01) So you have this I don't know if there's this duality happening.
Scott Benner (51:04) Right? (51:05) 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 and you can't put the effort in, and then your 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. (51:18) Like, Yeah. (51:18) I it creates an action, a a stillness where you're not doing anything all of a sudden on any front.
Kelly (51:24) I mean and all of that is true. (51:25) 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, as a type one.
Scott Benner (51:35) Yeah. (51:36) And you don't wanna have them, like, in your neighbor's house while everybody's singing happy birthday. (51:40) Yeah. (51:40) Right. (51:41) Right.
Kelly (51:42) Or Right.
Scott Benner (51:43) Or, you know, Thanksgiving when your grandmother, you know, your your cousin's like, oh, she's not having pie. (51:50) And you're like, no. (51:50) Yeah. (51:51) Yeah. (51:51) I I what's something wrong with my pie?
Scott Benner (51:53) What's wrong with my pie, Kelly? (51:55) Yeah. (51:55) Yeah. (51:56) There's nothing wrong with it. (51:57) My I can't take the
Kelly (51:59) food away from you because they're like, you can't eat that.
Scott Benner (52:01) You can't the did the old ladies do that? (52:03) Did they
Kelly (52:03) Oh, yeah.
Scott Benner (52:04) Yeah. (52:04) Yeah. (52:05) Give me that. (52:06) You don't want that.
Kelly (52:07) Yeah.
Scott Benner (52:08) Well, they're probably right too. (52:10) Damn it. (52:10) But you're like
Kelly (52:11) We're like, we know we shouldn't have this, but, you know
Scott Benner (52:14) Oh my gosh.
Kelly (52:15) What do you know about pre bolusing? (52:16) I'm joking.
Scott Benner (52:17) Would it help you if oh god. (52:20) What would help you? (52:22) Could you throw some of it on your husband?
Kelly (52:25) I am all way. (52:25) Like, what I
Scott Benner (52:26) don't know. (52:26) You'd be like, dude, listen. (52:28) You're in charge of dinner bowl or something. (52:29) Like, get it, like because what what occurs to me it's gonna sound silly for a second, especially to adults, but just hang with me for a second. (52:35) When my kid was younger and didn't have any thoughts of her own, I could put her a b one c wherever the hell I wanted it.
Scott Benner (52:42) And I could do it effortlessly because I had a different motivation. (52:46) I'm not burned out. (52:47) I'm not carrying the burden she's carrying. (52:49) So I I have a little I have a little more mental space for it. (52:53) And when you put somebody else in because we're we're talking all the time about these algorithms.
Scott Benner (52:56) Right? (52:56) Like, what's the goal? (52:57) 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.
Kelly (53:03) Right.
Scott Benner (53:03) We're all sitting around hoping that happens. (53:06) What if your husband could do that for you? (53:08) Like, 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) But like
Kelly (53:17) I was just gonna say that probably would be
Scott Benner (53:19) my You're like you're like, you don't know this guy, but, like, it's it's a bad idea. (53:23) Oh. (53:23) But, like, if I came to your house and I was like, hey. (53:26) I'm gonna live there for a week. (53:27) I'll do all your bolusing.
Scott Benner (53:29) Like, don't you think at the end of the week, you'd be like, this was awesome.
Kelly (53:33) Well, you don't think see, I just think about there's a control piece to it too. (53:36) Right? (53:37) Like, 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.
Scott Benner (53:47) Well, yeah. (53:48) But treat me like a robot for a second. (53:50) Let let's say it was a robot that showed up at your house, and it was making all the decisions for you. (53:54) Or that you you'd be would you be okay with that?
Kelly (53:57) Yeah. (53:58) If it could control all the highs and the lows and I didn't to think about anything, then yes.
Scott Benner (54:02) Then do you think that would make the burnout go away?
Kelly (54:04) Oh, sure. (54:05) It would. (54:05) Absolutely. (54:06) Okay. (54:06) You know, and as long as I don't need to worry about, you know, any bad hypoglycemia episodes and we're putting a robot in charge of all this, so that would be amazing.
Kelly (54:15) And maybe they could also use an insulin that works faster too. (54:18) We can throw that in.
Scott Benner (54:19) Why don't we teach it to vacuum? (54:20) Why don't we teach it to vacuum while we're at it? (54:23) That's all I'm That would
Kelly (54:24) be great.
Scott Benner (54:25) Well, goddamn right. (54:27) I hope that I'm doing a good job of picking through your psyche about this. (54:31) Like, I I wanna understand, like, I I get that you can feel guilty at times. (54:34) I get that you feel burnout. (54:36) I get that it sucks.
Scott Benner (54:36) Like, I understand all that, but I don't know that contextually people listening would be able to, like, figure out the why. (54:43) I I would imagine because the I think the way people's minds work is no matter what you say, someone's gonna say, yeah. (54:48) But, yeah. (54:49) But this Mhmm. (54:49) Yeah.
Scott Benner (54:50) But that Well, I
Kelly (54:50) had experienced some of that. (54:52) People were like, why would you wanna do a study? (54:54) Why would you wanna participate in something where you don't even know if this is gonna work? (54:58) Like, well, that's the whole point. (54:59) It's a clinical trial.
Scott Benner (55:01) Yeah. (55:01) We get if no if no one does it, we're never gonna find out.
Kelly (55:04) We're never gonna get anywhere if no one signs up for this, and I saw a benefit to me in this for sure. (55:10) I mean, based on what we've learned, the data from the other studies, and this certainly this is happening eleven years after the first porcine transplant. (55:21) So a lot has, you know, changed since that time, I would imagine. (55:24) I just thought I wanna be part of something that has the potential to change, you know, the future for for type one diabetics.
Scott Benner (55:32) Yeah. (55:32) No. (55:32) I said it before. (55:33) I'll say it again. (55:34) I I appreciate it.
Scott Benner (55:34) I think it's lovely that you did
Kelly (55:36) you.
Scott Benner (55:36) You should have responded to that person and said, what if there was a trial that would stop you from being a shithead? (55:40) Wouldn't you do it?
Kelly (55:43) They were like, why wouldn't you sign up for the other one? (55:46) The like, the why wouldn't you do the the cadaver islets? (55:50) It's a guarantee. (55:50) I said, well, yes. (55:51) I understand that, but, also, you know, there's immunosuppressants involved.
Kelly (55:55) Like, obviously, there are things you have to weigh in each of these studies.
Scott Benner (55:59) Immunosuppressants are no joke. (56:01) I've I've spoken to a number of people who've had to have transplants. (56:04) They wasn't, like, it wasn't the thing they decided. (56:06) They were only like, hey. (56:07) Let's try it.
Scott Benner (56:08) Like, it happened to them. (56:09) They had to do it, and that ain't easy. (56:12) And it it that's its own new problem. (56:14) Trust me. (56:14) You're burned out on that just as much as the other thing.
Scott Benner (56:17) Now you're gonna be burned out on something else and you're gonna have insulin. (56:19) And then by the way, I've also I've also interviewed people who've had three pancreases. (56:24) Wow. (56:25) They work and then they stop they give them another one and then it works and then it stops and they give them another like like that, you know, the I think people get confused sometimes. (56:35) They think medicine is television.
Scott Benner (56:37) Like, it's not it's not this isn't a sci fi show where everything works. (56:40) You you know what I mean? (56:41) Like, these are it's 2025. (56:43) We're trying it. (56:44) And it's you know, some of it works and some of it doesn't.
Kelly (56:47) Good news, I mean, for those that do pursue the cadaver islets, compared to a pancreas transplant, I mean, you're in the full dose anti rejection drugs the rest of your life, which come with risks. (56:58) Yeah. (56:58) For sure. (56:59) The this when you do an islet cell transplant, the dosage is is is far less than a major organ transplant. (57:06) So that's good, but it's not you know, it doesn't come with no risk.
Kelly (57:09) Right? (57:09) You're still trading, you know, one thing for another. (57:12) And so, yeah, I think anybody who's considering that has to has to weigh the the pros and the cons. (57:17) But I certainly would have considered it. (57:19) 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.
Kelly (57:26) So I was heading down that path. (57:29) And, you know, once insurance kinda fell through, I said, okay. (57:32) 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. (57:41) You know, I can help.
Scott Benner (57:43) Your husband was on board with this. (57:45) Did he have any reservations when you brought it up?
Kelly (57:47) Yeah. (57:48) No. (57:48) I think he you know, he's always been very supportive. (57:51) You know? (57:51) 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
Scott Benner (57:58) Yeah.
Kelly (57:59) More than I ever knew. (58:01) I really knew nothing about these trials. (58:03) And so, I had spoken to four different research hospitals in the area. (58:08) Just landed on, UIC or University of Illinois in Chicago, but he supported it. (58:13) He he looked at you know, I had emailed him some information about the study and just said if this is something you really wanna do, definitely support it.
Kelly (58:21) And, I mean, I flat out asked the doctor. (58:23) I just need to know what the real risks are here. (58:25) I have two young children. (58:26) So if, like, dying is a risk. (58:28) Like, I need to know that.
Kelly (58:29) You know?
Scott Benner (58:30) Right.
Kelly (58:30) 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 porcine transplant. (58:41) 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. (58:50) And I think that even that would be really just a break for me.
Scott Benner (58:55) Yeah. (58:56) Well, good for I I I hope so too. (58:57) Like, I I hope it I just I don't know. (58:59) I I I hope the best for all of this, and I'm very pleased for people to be out in the world trying to put push this stuff forward. (59:07) And, they'll have
Kelly (59:07) Oh, absolutely.
Scott Benner (59:08) Hopefully, they'll have good success and be able to share it with everybody.
Kelly (59:11) Yes. (59:12) That is certainly the hope. (59:13) And I do believe that's where we're headed. (59:15) Right? (59:15) There's a horrible amount work being done in this space and has been for a very long time.
Kelly (59:19) Sure. (59:20) You know, people think, oh gosh. (59:21) This is so new. (59:21) Why are you doing this? (59:22) It's like, it's not really new.
Kelly (59:24) I mean, the the the one of the surgeons did his first transplant in 1996. (59:28) It's this is not new.
Scott Benner (59:29) No. (59:29) I've I interviewed somebody, I mean, easily fifteen years ago about, like, those Vertex, like, pouches and stuff like that. (59:37) And so, you know, people have been at after this for a while, they just gotta figure out the technology behind it and and Yes. (59:43) Oh, well, alright. (59:44) I got my fingers crossed.
Kelly (59:46) Well, thank you.
Scott Benner (59:46) You're welcome. (59:47) I appreciate you doing this for me too. (59:48) This is, a World Diabetes Day we're recording this.
Kelly (59:51) Oh, that's right. (59:52) Well, that's pretty spectacular.
Scott Benner (59:54) It is.
Kelly (59:54) Well, thank you for having me on. (59:55) I really appreciate it.
Scott Benner (59:56) No. (59:56) You were awesome. (59:57) You really were. (59:58) Hold on one second for me. (59:58) I appreciate this.
Scott Benner (59:59) Give me one second. (1:00:06) Today's episode was sponsored by Skin Grip. (1:00:09) 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. (1:00:17) They don't want that to happen to you. (1:00:19) Juice Box podcast listeners save 20% off of their first order when you use the link skingrip.com/juicebox.
Scott Benner (1:00:26) Links are also available in the show notes of your podcast player and at juiceboxpodcast.com. (1:00:32) This episode of the Juice Box podcast was sponsored by US Med. (1:00:37) US Med dot com slash juice box or call (888) 721-1514. (1:00:44) Get started today with US Med. (1:00:47) A huge thanks to my longest sponsor, Omnipod.
Scott Benner (1:00:50) Check out the Omnipod five now with my link, omnipod.com/juicebox. (1:00:56) You may be eligible for a free starter kit, a free Omnipod five starter kit at my link. (1:01:03) Go check it out. (1:01:04) Omnipod.com/juicebox. (1:01:07) Terms and conditions apply.
Scott Benner (1:01:08) Full terms and conditions can be found at omnipod.com/juicebox. (1:01:13) Thank you so much for listening. (1:01:15) I'll be back very soon with another episode of the juice box podcast. (1:01:18) You're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple Podcasts, please do that now. (1:01:26) Seriously, just to hit follow or subscribe will really help the show.
Scott Benner (1:01:30) 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. (1:01:37) And if you leave a five star review, oh, I'll probably send you a Christmas card. (1:01:41) Would you like a Christmas card? (1:01:47) If you're looking for community around type one diabetes, check out the Juice Box podcast private Facebook group. (1:01:54) Juice Box podcast, type one diabetes.
Scott Benner (1:01:57) But everybody is welcome. (1:01:58) Type one, type two, gestational, loved ones, it doesn't matter to me. (1:02:03) If you're impacted by diabetes and you're looking for support, comfort, or community, check out Juice Box podcast, type one diabetes on Facebook. (1:02:13) If you'd like to hear about diabetes management in easy to take in bits, check out the small sips. (1:02:19) That's the series on the Juice Box podcast that listeners are talking about like it's a cheat code.
Scott Benner (1:02:24) These are perfect little bursts of clarity, one person said. (1:02:27) I finally understood things I've heard a 100 times. (1:02:31) Short, simple, and somehow exactly what I needed. (1:02:33) 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. (1:02:42) Nothing overwhelming, no fire hose of information, just steady helpful nudges that actually stick.
Scott Benner (1:02:47) People listen in their car, on walks, or rather actually bolus ing anytime that they need a quick shot of perspective. (1:02:54) And the reviews, they all say the same thing. (1:02:57) Small sips makes diabetes make sense. (1:03:00) Search for the Juice Box podcast, small sips, wherever you get audio. (1:03:05) If you have a podcast and you need a fantastic editor, you want Rob from Wrong Way Recording.
Scott Benner (1:03:11) Listen. (1:03:12) Truth be told, I'm, like, 20% smarter when Rob edits me. (1:03:16) He takes out all the, like, gaps of time and when I go, and stuff like that. (1:03:21) And it just I don't know, man. (1:03:22) Like, I listen back and I'm like, why do I sound smarter?
Scott Benner (1:03:25) And then I remember because I did one smart thing. (1:03:28) I hired Rob at wrongwayrecording.com.
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