#1819 Windy City Independence - Part 2
In part two, Lindsey returns to discuss how people-pleasing impacts her diabetes management , her fierce independence , dating , and why Scott insists she treats her hypothyroidism.




















Key Takeaways
- The Burden of People-Pleasing: Many people with Type 1 diabetes mask their true numbers or downplay their struggles to avoid upsetting loved ones, which can compound feelings of burnout.
- Accepting Help is Not Weakness: Fierce independence can create unnecessary barriers. Fighting to put a CGM on with a broken arm rather than asking for help is a symptom of a mindset that needs to be reframed.
- Advocate for Your Thyroid Health: Hypothyroidism and Hashimoto's frequently co-occur with T1D. If you have symptoms like brain fog and fatigue, and a TSH over 2.1 (like Lindsey's 4.1), you should firmly ask your doctor about thyroid hormone replacement.
- Live Life on Your Terms: Major life decisions—from attending college to deciding whether or not to have children—should be driven by your own goals and desires, not societal expectations or a desire to please others.
- Podcasting With Purpose: When starting a creative project like a podcast, the best approach is to do it for the love of conversation and documentation, rather than expecting immediate fame or financial success.
Resources Mentioned
- Touched By Type 1: touchedbytype1.org
- Eversense 365: eversensecgm.com/juicebox
- Tandem Diabetes Care (Tandem Mobi): tandemdiabetes.com/juicebox
- US Med: usmed.com/juicebox or call (888) 721-1514
- Juice Cruise 2026: juiceboxpodcast.com/juicecruise
- Juice Box Podcast Episode 413: Thyroid Symptoms Explained
- Juice Box Podcast Private Facebook Group
- Wrong Way Recording: wrongwayrecording.com
Introduction and Sponsors
Scott BennerWelcome back, friends, to another episode of the Juice Box podcast.
LindseyHi. My name's Lindsey, and I've been a type one diabetic for about twelve years now. I'm 25.
Scott BennerThis is part two of a two part episode. Go look at the title. If you don't recognize it, you haven't heard part one yet. It's probably the episode right before this in your podcast player. This episode of the juice box podcast is brought to you by my favorite diabetes organization, touched by type one. Please take a moment to learn more about them at touched by type one dot org on Facebook and Instagram. Touchedbytype1.org. Check out their many programs, their annual conference, awareness campaign, their d box program, dancing for diabetes. They have a dance program for local kids, a golf night, and so much more. Touchedbytype1.org. You're looking to help or you wanna see people helping people with type one, you want touched by type1.org. 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. I'm having an on body vibe alert. This episode of the Juice Box podcast is sponsored by Eversense three sixty five, the only one year wear CGM. That's one insertion and one CGM a year. One CGM, one year. Not every ten or fourteen days. Ever since cgm.com/juicebox. Today's episode is also sponsored by Tandem Mobi, the impressively small insulin pump. Tandem Mobi features Tandem's newest algorithm, Control IQ Plus technology. It's designed for greater discretion, more freedom, and improved time and range. Learn more and get started today at tandemdiabetes.com/juicebox. Lindsay's like, listen. It's on my list. Okay?
LindseyIt's on my list. But
The Burden of People-Pleasing
Scott BennerBut it's an interesting insight from you that you knew that your diabetes was making other people uncomfortable.
LindseyAnd not even, like, in a bad way, but, like, for instance, like, another example would be my parents asking me, how's your sugar? How's your sugar? Like, constantly, I would just say good even if it wasn't because I just didn't wanna talk about it. Or I didn't wanna get I didn't want them to be upset if it was too high or if I was run letting it run too high or letting it go too low or if I had too many lows or too many highs. Like, I just
Scott BennerYou didn't wanna let anybody down?
LindseyYeah. I kinda felt like bad numbers were a reflection of me.
Scott BennerAnd that's not language that you've been taught since then. That is how you felt when you were younger?
LindseyYes.
Scott BennerOkay.
LindseyYes.
Scott BennerYou know what I mean by that. Right? Like, sometimes, like, social media can tell you.
LindseyMhmm.
Scott BennerThe one that sticks to me is people with type one diabetes do a 130 extra things. You know, how many memes did we put that on before everybody just agreed that that was true?
LindseyYeah.
Scott BennerBy the way, I'm not saying they don't make a lot of extra decisions. I'm like, where did the number come from?
LindseyRight.
Scott BennerYou know? So, like, yeah, you think more about stuff and it sucks. And it's pretty constant. I watched yesterday was the first day of school for Arden, and I was downstairs doing my things in the kitchen. And she came down on her way to school, and I could see her stopping and looking around the room. And I didn't say, can I help you or something I can help you with? I just watched her, I realized, like, she was, like she was looking at different things around the room. She's like, do I have juice boxes with me? Do I have low snacks with me? Am I gonna need my an insulin pump change, am I gonna be back soon? Like, I could see her doing all that math before she left the house. And then she grabbed food. I watched her grab a banana. She clearly didn't want. She just grabbed it because I think she was like, I should have this with me. So I'm not saying you don't do a 130 more decisions a day. I'm just saying it's interesting that some one time somebody said they counted them up, and then suddenly everybody agreed on the same thing. Right. And I've seen that happen with other stuff too. So I asked, is that actually your experience, or is it something you that somebody's told you you're experiencing?
LindseyRight.
Scott BennerYeah. Yeah. Well, this is interesting. So the people around you are worried for you. The more attention you draw to it, the more worried you are, the more they speak to you, the more you realize you don't wanna talk about this, the more you're getting attention for things you don't want attention for. Yes. This is gonna be a strange thing. But taking how you feel out of it for a second, those people are still now in a orbit with you. Right? Like, so how can they more thoughtfully take their concern for you and make it actionable without it impacting you that way, or is there just no way for them to accomplish that?
LindseyYou know, I've had this discussion so many times with my parents and, like, my doctor because we had we've talked about it before, this problem that I hate the nagging or constantly, oh, how's your sugar? What's this? What whatever. So when I got my Dexcom and they were able to read my blood sugars, it was phenomenal because they didn't have to ask me anymore. They just looked at my graphs. And I loved that, but also kind of hated it because then they had the access to view it all the time. And if, say, my sugars were high, they were constantly nagging me like, you need to bring your sugar down, or would you eat, or why is it high, or oh, hey. Your sugar's going low. Like, I already don't know.
Scott BennerYeah. This is interesting. So that you fix one problem, but it just reveals a different issue for you.
LindseyYeah. I think, like, my issue is I don't like being told what to do, and I think it all comes down to, like, being in control of my life and, like, proving that I can do this on my own and I can take care of myself. And although, like, my parents and friends, they love me and they just care for me, and that's what they're doing. It's all out of love and care. Yeah. But to me, it would just, for some reason, annoy me. I don't know why, but it would trigger me anytime someone would ask me about my blood sugar or how are you doing with your diabetes. I don't know why. Yeah. And even still to this day, I still kinda like
Scott BennerThat was my next question. You still feel like that now?
LindseyKind of. Like, there'll be a couple times, and I don't know if it's because I think, oh, are they asking me because they think I'm not doing okay? Like, I don't know. I don't know where it comes from, but I still do.
Scott BennerListen. You and my daughter can start a band because no matter what happens, I think that's her initial feeling of, like, why are you insinuating that I can't do this on my own? Yes. She'll say something to me sometimes where, like, I can handle this. And I'm, I stop and I think to myself, like, no one insinuated that you can't handle this. And more importantly, I don't think you can handle it. Like so that feeling right there is just very universal for people. Yes. Like, you know, because I'm certainly I'm well aware of my daughter's ability to take care of herself. And I think she's an incredibly intelligent, thoughtful person who doesn't need my help at all. And so if in the course of a day you know, I'll tell you a great example. It's like we were I think we were all up I was upstairs. She was upstairs, but I think I was cleaning my room and she was cleaning her room. And I could hear I heard a beeping. I was like, oh, she's gonna get low. And I just knew that because we had eaten a few hours before, and then she went into a lot of activity and, like, was doing laundry and running around, and that classically kinda makes her low. And I needed something from downstairs. So I hear the beeping. I walk over to her and I say, hey. I gotta run downstairs for a second. Do you want me to grab you anything while I'm down there? She doesn't even, look at me. She's like, dad, I can take care of myself. And I was like, okay. So I stopped her and I said, I know you can. I was not saying you couldn't. I heard the beeping, and I'm on my way downstairs and I thought you might need something from downstairs. Let me ask. I said, this isn't me taking care of you. This is just a a well timed kindness. You know? And I said, so please please know I I believe you can take care of yourself. I I don't doubt that at all. That's not why I asked. And then I did not get the thing for her, which, by the way, she needed. And then five minutes later, she was downstairs looking for The me being right about that's not the point. Right? Like, the point is is that I don't want her to feel that way. But trust me, I was not coming at her from, like, hey. Let me get you a snack because you screwed this up and you're low now and what you know, like, it wasn't like that, but I bet you that's how it felt.
LindseyI I think it all comes down I don't know if it's the same for your daughter, but for me, I struggle with asking for help even if I need help. So me being the independent person I am, it's like I don't ever wanna ask for help even if I need it. So whenever someone is, like, trying to help, it's almost like I'm like, oh, you don't think I can do it? Or
The Struggle to Ask for Help
Scott BennerHere's my question. Do you know that's ridiculous?
LindseyYes. I do.
Scott BennerOkay. And how old are you?
LindseyI'm 25.
Scott BennerHow long do you expect to live?
LindseyHopefully, you know.
Scott BennerSixty more years, seventy more years. Right? Why can't we stop? Look at me putting this on you. You're 25. I'm like, here, answer the world's problems for me. But why can't you just understand that and stop? Just stop. Why can't I stop the things I can't stop? Why can't you stop, like
LindseyIt's a mental game. It's a mental thing, and I don't know why. I have always been this way. It's not even just diabetes. It could be as little as, like, I will struggle so hard opening something or doing something before I actually ask for help or before someone comes and helps me. Or, like, for instance, I recently broke my arm. Okay?
Scott BennerOkay.
LindseyAnd having a broken arm, I struggled to put my Dexcoms on.
Scott BennerFair.
LindseySo in this instance, I had to ask help from my mom to put my Dexcom on, and I hated it because, one, she hasn't put a Dexcom on my body in I don't know how many years. So one, I'm gonna have to teach her, and I know she's gonna get stressed out about it. Two, I'm asking for help, and then deep down inside, I'm like, well, is there a way I can try to figure out how to do it, like, by myself? And I try to it's like, I'm making it harder for myself when I could literally just tell my mom how to do it, and she could help me and just do it in the future. But
Scott BennerMy grandmother would say, why are you making a mountain out of a molehill?
LindseyExactly.
Scott BennerYes. Yes.
LindseyYeah. I don't know. Yeah. So for instance, just the other day, she came over because my arm is still broken. However, my arm is almost fully healed. I have about, like, a week or two left of my cast. And I've had my cast off after the shower because I I'm to the stage where I could take my cast off
Scott BennerOkay.
LindseyIn the shower. So I had it off for a little bit, knew I was gonna put my Dexcom on, and she was over. And she was like, okay. I'm gonna help you do your Dexcom. For some reason, because she was busy doing something, I was like, you know what? I'm just gonna figure out how to do it. So I do it did it on my other arm, and I figured out how to do it without my cast.
Scott BennerWhat else are you a pain in the ass about, Lindsay?
LindseyYou know what? Maybe you need to get my parents on here. They could tell you.
Scott BennerBut that's it's just interesting example of, like, you did not need to make a barrier for yourself there.
LindseyRight. Yeah.
Scott BennerAnd not only did you do it, it sounds like you were aware that you were doing it while you were doing it.
LindseyI was. And I was like, you know what? But, like, I like to prove to myself too that I can do things. So, like, me, like, putting my Dexcom on, I was like, oh. And I walked out and she's like, what? How'd you put that on your arm? And I was like, I did it myself. And she was like, I I woulda helped you.
Scott BennerLike, you're eight. But don't you know you're a capable person?
LindseyYes.
Scott BennerWhy do you have to keep proving it to yourself?
LindseyI don't know. That that's what I'm trying to figure out too. It's you know, like, see, this is the therapy I need to get into, like, figuring out all my deeper wounds and, like, why I think the way
Scott BennerI do. Don't you find people interesting?
LindseyThey are so interesting.
Scott BennerIf I didn't find everyone so interesting, I don't even think I can make the podcast anymore. Right. I know that some people will find this to be a minutiae, but I am fascinated by this aspect of you. Right? Like, you figured a thing out already. Move on. Yeah. But you're not going to.
LindseyI know. I will I it's not that I'm not trying because there are
Scott BennerWell, I didn't say you weren't trying. I'm saying you're not going to.
LindseyNot necessarily. I'm I'm gonna try. I'm gonna try to be better.
Scott BennerBut I don't think you even need to be better. I think you know what this falls under for me? The category of often, the best thing to do is nothing. Like, you're over managing something that doesn't need attention. Yeah. Your mom's there. You're taking a shower. She's here to help. Awesome. Right? Yeah. Okay. But then what happens? I can do it myself. I don't need help. I don't need anybody. I'm okay. All those feelings. Yeah. The world thinks I can't, but I can.
LindseyYep.
Scott BennerI'm smart. I'm not stupid like everybody says. Is that a line from a movie? I forget what that is. A very old movie if it is. Like, right like, so there's you know, do you ever listen to me talk to Erica?
LindseyI don't know. I'll be honest.
Scott BennerIt's mental health stuff. Right?
LindseyOh, yeah.
Scott BennerShe's a therapist, and, like, she'll explain something and she gets done and often I wanna say, so there's no getting out of this? We're all just just stuck in this the way our brains work and everything.
LindseyMaybe I need to talk to her.
Scott BennerI if I was you, would just stop. I would write on a sticky note, stop, and then hold it in my hand.
LindseyGot it. Just stick it to my forehead and look in the mirror every day.
Scott BennerEvery time you go to do something and you're like, I shouldn't be doing this, you go, oh, yeah. I should stop.
LindseyYeah.
Scott BennerIf it was that easy. You know? Right. So, anyway, thirty five minutes later. So you experienced burnout?
LindseyYes. I experienced burnout, and I still do. And I think it's a like, it's because of this, because I don't ask for help, I try to just do everything myself, which, I mean, like I said, not that I'm not capable and not that I can't do it by myself, but there's certain things in certain moments in diabetes that, you know, it's okay to get help or, you know, it's okay to be burned out from the everyday things that you do.
Scott BennerYeah. Of course. But are you explaining that to me or talking yourself into believing it?
LindseyShoot. I mean, kind of
Scott BennerWhile you're keeping that in your head. Because you have maybe a half a dozen times said that people need help sometimes. But you preface it each time by telling me that it's not that I can't do it myself. Who told you you can't do things?
LindseyI don't know. That's I don't know.
Scott BennerWhat happened that makes you so confused and able to accept the fact that you're a capable person?
LindseyYeah. I I really don't know. I'll be honest. I have no idea where I got, like, this mindset.
Scott BennerIn this conversation, do you know that you've prefaced that so many times?
LindseyYeah. Now now after you've said that to me.
Scott BennerEvery time you stop yourself and you go, it's not that I can't. It's not that I don't know how, but it's okay to accept help. I'm like, who are you talking into this exactly? I don't know.
LindseyI don't know. Now that you say that, now I realize it, but I didn't even know I doing that.
Scott BennerYou're fine. You're lovely. I've seen you. I've seen a picture of you. You're a lovely person. Accept all that and move forward. Yeah. Yeah. I could save you ten years of pain.
LindseyYou're right.
Life Goals and Career Paths
Scott BennerYeah. Because you don't wanna know what's gonna happen? What? Eventually, you're gonna meet a boy you can somewhat tolerate. Okay? And then you're gonna let him have a baby with you. Okay?
LindseyI don't know about that.
Scott BennerTrust me, Lindsay. It's coming.
LindseyI don't know about that.
Scott BennerAnd then you get this kid, and then you're gonna realize that you're wasting all this time on this, and you need to focus on that kid. And then you're just gonna let it all go. And then you're just gonna move forward. I'm telling you, move forward now and enjoy this time, and don't have to make a baby with a boy you can only tolerate to get to it. Just do it now. Live like Valerie, Valerie Harper in that television program, 70. Just be by yourself and wonderful with you and your girlfriends. Yeah. It's gonna be awesome. What are your goals? 25 is an interesting age. Are you out of school? Did you go to school? Are you working? What are you trying to accomplish? Let's talk about the Tandem Mobi insulin pump from today's sponsor, Tandem Diabetes Care. Their newest algorithm, Control IQ Plus technology and the new Tandem Mobi pump offer you unique opportunities to have better control. It's the only system with auto bolus that helps with missed meals and preventing hyperglycemia, the only system with a dedicated sleep setting, and the only system with off or on body wear options. Tandem Mobi gives you more discretion, freedom, and options for how to manage your diabetes. This is their best algorithm ever, and they'd like you to check it out at tandemdiabetes.com/juicebox. When you get to my link, you're going to see integrations with Dexcom sensors and a ton of other information that's gonna help you learn about Tandem's tiny pump that's big on control. Tandemdiabetes.com/juicebox. The Tandem Mobi system is available for people ages two and up who want an automated delivery system to help them sleep better, wake up in range, and address high blood sugars with auto bolus. When you think of a CGM and all the good that it brings in your life, is the first thing you think about, I love that I have to change it all the time? I love the warm up period every time I have to change it. I love that when I bump into a door frame, sometimes it gets ripped off. I love that the adhesive kinda gets mushy sometimes when I sweat and falls off. No. These are not the things that you love about a CGM. Today's episode of the Juice Box podcast is sponsored by the Eversense three sixty five, the only CGM that you only have to put on once a year and the only CGM that won't give you any of those problems. The Eversense three sixty five is the only one year CGM designed to minimize device frustration. It has exceptional accuracy for one year with almost no false alarms from compression lows while you're sleeping. You can manage your diabetes instead of your CGM with the Eversense three sixty five. Learn more and get started today at eversincecgm.com/juicebox. One year, one CGM.
LindseyI'm out of school. I did go to college after my associate's degree to, like, a university. I was at community college, went to university for a little bit. Then when COVID happened, I decided to drop out during that. I became a bartender server. Now I currently bartend at a sushi and martini lounge that I absolutely love.
Scott BennerAwesome.
LindseyAnd, basically, my goals in life, I just want to live life to the fullest, travel everywhere. Like, that is one of my biggest goals is I want to travel everywhere.
Scott BennerOkay.
LindseyI want to go see everything, do everything. I'm always just interested in trying new things. Goals, you know, this is one of my goals is starting my own podcast because I think it would be so much fun.
Scott BennerOh, you think so? I'll explain that to you in a minute. Go ahead.
LindseyBut, yeah, like, podcast, just, you know, being happy in life. I'd love to move up in my bartending career and maybe become a mixologist of some sort. I'm looking to make a move to Chicago very soon. So, hopefully, I can learn more once I move to the big city.
Scott BennerSo Look at you. You're gonna get off the farm?
LindseyYeah. Basically. I mean, I'm not where I live is just very small town, and I've been here way too long. I'm I just need to experience a change.
Scott BennerIs it more Northern Michigan?
LindseyYeah. I'm, like, in the middle. So, like, Mount Pleasant.
Scott BennerI've heard people from there com complain about it.
LindseyYeah.
Scott BennerYeah. I've also heard people complain about the Southern part of Delaware, the center part of Pennsylvania, the Western part. People complain about wherever they're from. And and, you know, and everybody thinks that, like, you know, a city center is gonna be a big change for you. Maybe it will be. That's lovely. When you went to college, did you go because you wanted to go or because somebody told you you should?
LindseyKind of both. I thought I knew what I wanted to do, and then I I realized I did not know what I wanted to do once I was taking classes. I was going for psychology, and then I wanted to become a psychiatrist. So I thought, Later on, realized, no. I don't wanna do this. However, before I went, I did think I wanted to go, but I was going because it's just the thing to do. It's the thing that everyone's doing after high school. It's the right thing. It's the thing that's gonna make people proud of you.
Scott BennerMhmm. Oh, so you thought people expected you to do it and you wanted them to be happy again?
LindseyYeah.
Scott BennerAre you a people pleaser in general?
LindseyI am. It's something I'm working on.
Scott BennerHow do you work on that?
LindseyJust really thinking before I agree to things or say yes to things. I try to really like, the hardest thing that I deal with as a people pleaser is making time for myself instead of spreading my time thin with Mhmm. All the people I love. That's what I suck at.
Scott BennerNo. Is it possible having diabetes turned you into a people pleaser, or do you think that's always how you are?
LindseyI think I've always been this way.
Scott BennerOkay. Wanna hear something interesting? Yeah. If a 100 students started college today, 62 would finish on time. That's within six years. Sixty two percent. Three percent will finish late in the six to eight year realm. Thirty five percent never finish college. That's a pretty big number. Thirty five percent. Yeah. I wonder if a hundred percent of those thirty five percent would later say to themselves, I never really want like, if they'd start describing it the way you are. Like, oh, I went because I thought I should or, yeah, I was trying to make somebody happier, like, that kind of a thing. Yeah. Because you don't have any world domination goals. It doesn't sound like you want a whole big pile of money. You're not looking for
LindseyNo. Yeah.
Scott BennerYou'd like to see the world, enjoy your life. Yeah. And you love being a bartender.
LindseyI do.
Scott BennerYeah. And the good news
LindseyEnjoy it.
Scott BennerYou know the good news about that? What? The bartender never gets killed.
LindseyHey.
Scott BennerHave you ever seen Desperado?
LindseyI have. Yes.
Scott BennerDamn. Right? And what is Cheech Maringrave? He goes, the bartender never gets killed. And then they they eventually kill him. So, I I guess it's not a hard and fast rule. But why do you love it so much?
LindseyI love it because I get to come into work and talk to people and hear other people's stories. I get to know people. It's a social job. I could never do a job where I'm sitting at a desk or just looking at a screen all day. I need to be up and active and talking to people. And not only that, like, that's just, like, the service part, but, like, making drinks and just getting to be creative, that's always fun. I love anytime a job allows you to be creative. So that's what I really enjoy. The two things that I enjoy most about bartending.
Dating, Relationships, and Independence
Scott BennerWonderful. I'm glad you found something you like so much. Why did you so, effortlessly say, I'm not letting a boy near my baby maker? What is it? You don't like the kids?
LindseyI just I don't have any goals of having kids, if I'm being completely honest.
Scott BennerBecause they suck. Why? Because.
LindseyThey just I don't know. I I guess this is another thing, like, you know, I can barely take care of myself. I don't know how I would take care of another human being.
Scott BennerWhat if you get married and that boy really wants a baby and your people pleaser, like, snaps in and you're like, oh, I mean, he I mean, he does like, he lives here too and he does really want a baby. Like, what happens if that happens? Will you be able to be like, no?
LindseyI have thought about it. Well, only because, like, it is a thing. Like, it's a deal breaker these days. Like, people wanna start families.
Scott BennerYeah.
LindseyI'm 25. You know? There's men my age who are like, alright. I'm ready to settle down and start a family. And then there's others that maybe they don't want a family or they're still figuring it out. But I have always thought, like, oh, I don't want kids. But then I start to think, okay. What if the right person came, and what if I wanted a mini me and a mini him? Like, that'd be so cute, and I would love that. But then when I think of all of the things that come with parenthood, I start to be like, ugh. I don't know. I still I don't think I want it that bad.
Scott BennerIt's wonderful and horrible at the same time, Lindsay.
LindseyYeah.
Scott BennerYeah. Yeah. Who knows? Just be careful because sometimes those hormones, they start hitting you the wrong way. And before you know it, you're doing stuff you didn't even expect to
Lindseydo. Right.
Scott BennerHave you heard those stories about the women who marry guys while they're on birth control, but then go off birth control to learn they didn't like the guy?
LindseyYeah. A little bit.
Scott BennerYeah. Look into it.
LindseyOkay.
Scott BennerYour hormones get a little wonky and tell you what you want. The pill tells your body you're pregnant, and then you start looking for, like, big burly can kill a moose guy.
LindseyYeah.
Scott BennerRight? And then when you're off the thing and you're not pregnant, you realize I don't really like big burly can kill a moose guy jumping in this coal plunge guy. Yeah. I it's not what I was really looking for. Apparently, that happens.
LindseyYeah. You know, I have heard of it, but I should look into it more.
Scott BennerI would. Be careful.
LindseyIt's so funny. Yeah. Yeah. I actually just recently decided to be off birth control. So, like, that that this is I should look it up.
Scott BennerPay attention to what's happening to you. Yeah. I'm only living in this house because my wife got confused and thought she wanted a baby. Thank god. I'd be out of the street. You know what I mean? She would have looked at me like and been like, why am I dating this idiot? And like yeah. But now she got fooled. So Yeah. That's her mistake. Now, and now I have a house.
LindseyYes.
Scott BennerFool me once. Shame on me. Fool me. Can't get fooled again. Too late, though, now. Okay. Alright. So be careful with all that. I like your plan. Are you gonna be by yourself? Are you dating someone?
LindseyI currently am not dating. Mhmm. But I've been single for going on five years now. So I've been single for quite some time.
Scott BennerOn purpose?
LindseyYeah. Actually, yes.
Scott BennerI don't understand your whole generation. Explain it to me.
LindseyFor me, currently, it's not that I'm opposed to getting into a relationship. I will definitely get into the relationship with the right person.
Scott BennerMhmm.
LindseyBut I'm not going to settle for less than I want, and I'm not gonna force a connection if it's not there.
Scott BennerSure.
LindseyI've definitely talked and dated around in these past five years, but just, you know, relationships, things happen and
Scott BennerWhat about the fun parts?
LindseyWhat about The fun parts?
Scott BennerWhat about 01:30AM in a grocery store holding a pint of Ben and Jerry's? You've just had sex three times. You're in a pair of sweatpants, and you're just, like, couldn't go to sleep. So you and him are in the grocery store looking for ice cream.
LindseyNo. You know, that's great. And you have those connections with people, and then sometimes they just end up saying, oh, yeah. That was casual, and I don't want you like that.
Scott BennerIs the cell phone ruining personal relationships? Is the feeling, Lindsay, that I don't have to persevere through real relationship ideas with this person because I can just go find another person, go back to the fun part at the beginning? Do you think that exists because it's simple?
LindseyFor some people, yes. For some people, no.
Scott BennerYeah.
LindseyBecause I do know a lot of people who kind of go through that phase of, like, they're with a person, realize, well, I know I can be with somebody else and just do this all over again and just keep repeating it and, like, it's a cycle, and they go through relationships like
Scott BennerIt's like digital divorce, I think.
LindseyYeah.
Scott BennerYeah. By the way, not that some people shouldn't get divorced. I'm not saying that. But I do sometimes think some people are like, oh, I wanna do the fun part again.
LindseyRight. Yeah. No. I I definitely think that is true, and I think that's valid. However
Scott BennerYou would like a nice relationship, but you just
LindseyI would love a relationship, especially after being single. Like, don't get me wrong. I'm like I said, I'm in independent. So, like, I love my independence.
Scott BennerThere's a new girl in town. Go ahead. Lindsay, tell them. I
Lindseylove my independence, but there's times where I'm like, dang. It would really be nice if I could just have someone here with me hanging out all the time or, you know, I wish I had my person to talk to every single day. Like, I hate the dating apps. I hate the constant meeting someone online or talking to someone online for a little bit and then then just disappearing and then you forget who they even are or how you even have their number in your phone.
Scott BennerWho is this?
LindseyYeah. That's happened a lot.
Scott BennerBoy, I let touch my arm three months ago. It's in the phone book right there. Now I just I can't imagine the whole thing seems terrible.
LindseyIt does. I don't know. I really do feel like this generation, it's hard because everyone is like, well, is there better out there? Can I have better? Like, settling comes to a certain, like, fine line. Are you settling for, like, less than what you deserve and you know that there's more out there, or are you not settling because you just think your perfect person is going to come that matches all of
Scott BennerAnd then that never happens, and then one day it's just you and the cats and cancer. I hear what you're saying.
LindseyYeah. And it's tough because you want to believe, oh, like, my person's out there, And, yeah, they don't need to be perfect. They don't have to have everything on the list.
Scott BennerCan I tell you something? I believe my wife is my soulmate. I also believe there's probably a thousand other ladies out there I could feel that way about.
LindseyTrue. Yeah.
Scott BennerThis is no disrespect to my wife. I'm sure she would say the same thing about me. I'm saying, like, there are other people I've met through my life that I could see my life having gone well with that person too, but something comes up or, you know, it doesn't work out quite right. Just I don't think there's just one person. And I do think that in a world where I could pick my phone up right now and order the silliest thing and it show up at my house, like, without resistance, it'll just be there. I do think that people are willing to believe that there's better coming, and you don't wanna settle because better is coming. Yeah. And I do really think that could make time go by quickly. Yeah. Because I don't think I'm not perfect, and I don't think my wife would tell you that I am. And I'm sure she was with boys or new men before me that, like, she could probably look back now and go, I probably should have given that one a shot instead, and I could tell you the same thing. But, like, that doesn't make my life invalid Mhmm. Or what we did a waste of time. It's so it's wonderful. It's beautiful. You know what I mean? Like, I just think if you guys are waiting for the exact right thing, I think you're out of your mind. I don't think that exists.
LindseyRight. No. I totally agree with that, and I don't. And I don't think there's anybody who's perfect or who's gonna match up to my perfect list of Yeah. Traits that I want in someone. However
Scott BennerYou don't wanna be involved with a bunch of boys who are just gonna jump on you three times and then be like, alright. I'm gonna go do it with somebody else now.
LindseyExactly. And I feel like that's a lot of what's going on
Scott BennerMhmm.
LindseyNow and at my age. However, another thing, I'll be honest, that's another reason why I am so excited to move to a different city. I feel like I know everybody in my small town. Oh. Either I know somebody that's dated them already or slept with them or I've already talked to them and it's already not worked out or whatever. Like, the town is so small that, like, I'm just ready to see and meet new people.
Scott BennerYeah. So You wanna find a bigger pond efficient.
LindseyYeah. Yeah. For sure.
Scott BennerAnd is the job kind of anticlimactic for people? Because a lot of people in a bar situation are looking to hook up. They're not looking to
LindseyYeah. That's where it does get tough. Being a bartender, you meet so many people. But the type of bartending I do, I usually stick to the more, like, classy restaurants, not like the dive bars, but more like fine dining. So most people are going on dates at my bar. They're not really looking.
Scott BennerThey're not leaning across the bar going, hey.
LindseyYeah. Me
Scott Benneryour name. I gotcha. Yep. A lot of problems. Not a lot of answers. You live by yourself?
LindseyI actually live with my sister.
Scott BennerOh. Oh, that's nice. How many other brothers and or sisters do you have?
LindseySo I have two sisters, one twenty three, one that just turned 16, and then I have a younger brother who's about to be 19.
Uncovering Hypothyroidism
Scott BennerWow. Anybody else have autoimmune issues? Type one diabetes, celiac, thyroid?
LindseyNo. Not at all. Nothing?
Scott BennerNothing.
LindseyI will say my father has some thyroid issues, but nothing like
Scott BennerWhat's that mean? Is he moody?
LindseyNo. No. It sounds bad, but I just know he takes a pill for his hypothyroidism.
Scott BennerOkay. So he has Hashimoto's?
LindseyI don't know. I I mean, I assume.
Scott BennerHow often do you guys speak? Do you know each other by first name?
LindseyWe talk a lot. Like, we see each other a lot, but it's bad that, like, I guess I've never really asked him about that. I will say, they told me I have Hashimoto's, but yet I don't take any medication
Scott Bennerfor it. No. No. No. No. No. No. No. First of all, it's not bad that you and your dad don't talk about what a great opportunity for you to get to know each other better. And secondly, you have Hashimoto's, but why don't they have the medication? Do you not have any symptoms? It's Do you wanna go over the symptoms? Do you are you tired even though you've slept?
LindseyI mean, yeah. I think I do have symptoms, but it's weird because I had markers for it on, like, lab results, like, years ago. And then all of a sudden, I didn't.
Scott BennerYour hair falling out?
LindseyI it's occasional. It's not all the time.
Scott BennerDry skin?
LindseyYes.
Scott BennerMhmm. Do you have trouble losing weight?
LindseyYes.
Scott BennerMhmm. Do you need me to keep talking, or do you wanna go get your thyroid checked out?
LindseyI guess, that's what I should do next up.
Scott BennerWhat was your TSH the last time it was checked?
LindseyYou know, if I looked, I could probably look and tell you right now.
Scott BennerDo I need to do this with everybody on the planet? Listen to me. I I'm gonna say it out loud. If your TSH is over 2.1, 2.2, and you have symptoms, those symptoms are listed anywhere, ask the Internet, you probably require a thyroid replacement hormone. It's a tiny little pill you would take in the morning when you wake up, but it's not difficult. It will change your life and make things better.
LindseyYeah.
Scott BennerYes. Are you moody? Do you ever have brain fog?
LindseyBrain fog? Definitely.
Scott BennerOkay. Okay. I I gotta stop doing this with you people. I I I I I can't be in charge of everybody. Okay, Lindsay? You gotta get out there and help yourselves once in a while. Alright. Go to your person, whatever the doctor is. I don't know what you use, endocrinology, and tell them you have these symptoms. List your symptoms. Don't let me tell you what your symptoms are. Okay? You list your symptoms and then ask to have some blood work done. And if your TSH is over, like, 2.1, 2.2, tell them, but still in range. Say, I appreciate that my labs are in range, but I'm having a lot of hypothyroid symptoms. My father has hypothyroidism. You've told me I have Hashimoto's. I already have an autoimmune issue called type one diabetes. Let's try that Synthroid. Run that up the flagpole one time, see who salutes. Get in there.
LindseyI'm so glad we're talking about this because I just pulled it up on my chart. And?
Scott BennerAnd it says the last time, it was 4.1 What is going on? What kind of a witch doctor do you see? I see the Did no one know what the hell is going on? I can't be everywhere, Lindsay. I can't. I can't. I'm trying, but I can't. Okay? Immediately, call your doctor, refer to the lab, tell them the things, tell them you want the Synthroid, tell them to base the first dose on your weight, whatever they do there in their little doctor's office with their calculator, and most of your symptoms are gonna go away.
LindseyOkay.
Scott BennerWeeks to months.
LindseyAlright.
Scott BennerI love this for you.
LindseyYeah. I love this for me too because wow.
Scott BennerYeah. Because who needs all that? Yeah. Like, I thyroid symptoms explained. May I? Extreme fatigue, weight gain, cold sensitivity, constipation. Do you have any of those?
LindseyYes.
Scott BennerExcellent. Dry skin or hair, puffy face, hair loss, hoarseness. Oh, do you have a hoarse voice?
LindseyI don't know.
Scott BennerLindsay, you do. Okay. Muscle weakness. Do you feel weak particularly in your upper arms or thighs?
LindseyNot not necessarily.
Scott BennerYou don't have to have them all. Brain fog, depression, low mood, apathy, lack of interest in activities.
LindseyYeah. Some of those. Yeah.
Scott BennerMhmm. Menstrual change is heavier than normal, irregular periods. Yes. Slow heart rate, joint and muscle pain. Okay. That's okay. Again, you don't have to have them all. That's it. I'm telling you, my god, please.
LindseyThank you so much.
Scott BennerAlright. Episode four thirteen of the podcast if you wanna be talked into it by a physician and not by a guy who has a podcast. Okay? Okay. Alright. Last thing. I I I'm gonna try to be, supportive here. Okay? Mhmm. What did you mean you wanna have a podcast?
Starting a Podcast
LindseyI love talking. I just love talking to people. And I do have a lot of just life stories. Mhmm. And I know a lot of people in my life who have a lot of funny, cool, awesome stories that I just would love to share and just post it somewhere. Not even, like, for other people, but just, like, even for my own friend group. Like, just to us to get it out, talk, or just have it recorded somewhere. Like, I've always thought that'd be so awesome.
Scott BennerI like this idea for you. You see, you're not telling me you wanna quit your job and have a podcast.
LindseyOh, no. Okay. Definitely not quit my job, but I definitely think I should take more out of my day or time block to actually start a podcast because I've been saying it for years. Oh, I think it'd be so fun. I would love to do it. And now that I'm actually talking with you, I'm like, oh my gosh. I could I could actually see myself doing this.
Scott BennerObviously, you're doing great. You're fantastic. And so yeah. So what do you need? You need a microphone? You need a computer? You need a hard drive? That's pretty much it.
LindseyAnd Alright. Good to know.
Scott BennerYou could definitely do it. May I give you my angle for you?
LindseyYes, please.
Scott BennerPeople you met at the bar. Right?
LindseyYes. Yeah.
Scott BennerYou sit down and you talk about people you met at the bar. You have a conversation with those people. Yes. That's a great way to, you know, find a niche.
LindseyAnd Yeah. That would be so fun, actually.
Scott BennerOf Of course. Don't get caught up in you and your friends are so interesting. You're not that interesting. Right. Okay? Keep that in mind. I'll give you a couple little pieces of advice. Nice clean audio is very important. Okay? Nobody's listening to your garbly like somebody's like sounds like they're across the room yelling into a pot. It doesn't need to be video. Okay? If you find it easier to do it that way, no problem, but then you're gonna feel pressured to light it well and it'll look good. And the truth is is ain't nobody looking that much, so don't worry about it. Audio is fine. Okay?
LindseyGot it.
Scott BennerAlright. You're not as interesting as you think you are. I am not as interesting as I think I am, and other people are definitely not as interesting as they think they are. So when you get bored while you're talking, pivot. Okay? Don't let somebody go on and on and on. If you're getting bored, then the audience is getting bored. Makes sense?
LindseyGot it.
Scott BennerYeah. Alright. Ask open ended questions. Let people talk. Have opinions. Don't be embarrassed by your opinions, and just share how you feel. And hopefully, people will enjoy it. And if they do, it'll grow. And if they don't, you'll stop doing it. And if it's just for a small group of people, then right on. Like, that would be cool too. It might be interesting for you, like, to pick a small group of people, interview all of them, and then come back again and expand your conversation with them and see if you could learn. There's so many different things you could do. I love this idea for you.
LindseyThank you. I appreciate your advice.
Scott BennerOh, please. Yeah. Here's the part you don't wanna hear. It's impossible to start a successful podcast. You're not gonna make any money. And, if you keep those things in mind, think you'd have a great time with it. Yeah. It's random that it becomes popular. You can't make it popular is what I'm saying.
LindseyRight.
Scott BennerAlright? And if it does, then it's just a happy accident.
LindseyYeah. And honestly, that's kind of like my whole goal with it is honestly I don't think I would really hope it blows up. Like, cool if it did, that'd be awesome. But if it doesn't, I think it just would be good to just talk and just know that I'm sharing my stories with whoever wants to watch or listen.
Scott BennerThen I think you have the perfect attitude for this.
LindseyThank you.
Scott BennerSeriously, I was afraid you were gonna tell me like, Scott, let me tell you something. I am gonna start this thing up, probably be making $510,000,000 a year in no time. And, you know, I'll probably be pushing out bigger names in the podcast industry. This, call me daddy girl. She'll be gone.
LindseyAlright.
Scott BennerI'll run her right over. No. You there are people in your generation who think they're going to be influencers.
LindseyRight.
Scott BennerThey actually think that's a job. Yep. Yep. That's so silly.
LindseyUnfortunately, it's not.
Scott BennerYou're all gonna end up on OnlyFans. Just stop it.
LindseyOh, no.
Scott BennerNo. And and, Lindsay, we don't want that for you.
LindseyYeah. No. Definitely not.
Outro and Final Thoughts
Scott BennerAlright. Listen. You're awesome. I want you to remember something.
LindseyOkay.
Scott BennerYou're a capable person. You don't need to talk yourself into it over and over again. Okay? Okay. We do things for us, not for other people. Right? So you don't have to make anybody happy. Just live your life.
LindseyMhmm.
Scott BennerYou don't get a lab value of a four. Have somebody tell you of hypothyroidism. Have a bunch of hypothyroidism symptoms and then not do anything about it. That's not okay.
LindseyNot okay.
Scott BennerWhat else are you ignoring in your life?
LindseyProbably my laundry right now, if I'm being so real.
Scott BennerGet right on it. And here and let me talk to boys your age for a second. This Lindsey chick is cool. Do you hear her? You'll be lucky to get this girl to to have a a meal with you. Stop running around trying to have sex with everybody all the time. Maybe get to know somebody, you bunch of idiots. There. That's what I got for those boys.
LindseyI love that. Yeah. My future like, when I go on a date, I'm gonna play that before we go on dates now.
Scott BennerListen, dumbass. You'll be nice. You'll see them, but calm down. Okay? That's how you start, Lindsay. You can tell if they don't get to see them right away just because we drove somewhere. That's not how it works. Okay? Right. Yeah. You'll be nice and real, and I'm nice and real, we have a little connection, and then yeah. Okay. And then, by the way, the first time I bring something up you don't like, it'd be nice if you didn't ghost me. Okay? Like, because you already said six things I don't like about you and I'm still sitting here. Tell them that
Lindseytoo. Yes.
Scott BennerAlright. Lindsay, God bless you. I don't know what's gonna happen.
LindseyYeah. Who knows? You know what? I'm just along for the ride. It was crazy awesomely.
Scott BennerWhat a great attitude. I love you. You're awesome.
LindseyUh-uh. I love you too.
Scott BennerSeriously, I'd introduce you to my son. The two of you would definitely have a baby with diabetes, so I'd be trying to avoid that. Okay? Alright.
LindseyWell, you know what? If your son's cute, give him my number.
Scott BennerListen. You guys are about the same age, and the the ladies do seem to find him attractive.
LindseyOkay. Well Yeah. Yeah. You know what? You might have to email me right after this podcast.
Scott BennerHe's got a good job, Lindsay.
LindseyShoot. What does he do?
Scott BennerI don't wanna say.
LindseyYeah. No. Understandable.
Scott BennerHe's a data engineer. Like, he's a, like, a reliable person.
LindseyOkay. Dang. Now you're gonna start, a speed dating thing on your podcast for your son.
Scott BennerI have to tell you something, though. I don't know. Like, there are, I wanna be vague because this is his personal life, but the very specific kinds of people are attracted to my son.
LindseyOkay. Yeah. What are those specific people?
Scott BennerI don't feel like that's my place to share that.
LindseyOh, okay. Okay.
Scott BennerYeah. I'll tell you when we shut the microphone off.
LindseyYeah. That sounds good.
Scott BennerSay goodbye to the people. You'll find out right now.
LindseyGoodbye.
Scott BennerTouched by Type One sponsored this episode of the Juice Box podcast. Check them out at touchedbytype1.org on Instagram and Facebook. Give them a follow. Go check out what they're doing. They are helping people with type one diabetes in ways you just can't imagine. The podcast episode that you just enjoyed was sponsored by Eversense CGM. They make the Eversense three sixty five. That thing lasts a whole year. One insertion. Every year? Come on. You probably feel like I'm messing with you, but I'm not. Ever since cgm.com/juicebox. Head now to tandemdiabetes.com/juicebox and check out today's sponsor, Tandem Diabetes Care. I think you're gonna find exactly what you're looking for at that link, including a way to sign up and get started with the Tandem Mobi system. Hey. Thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of the juice box podcast. If you're looking for community around type one diabetes, check out the Juice Box Podcast private Facebook group. Juice Box Podcast, type one diabetes. But everybody is welcome. Type one, type two, 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 one diabetes on Facebook. How would you like to share a type one diabetes getaway like no other? Join me on Juice Cruise twenty twenty six. You may be asking, what is Juice Cruise? It's a week long cruise designed specifically for people and families living with type one diabetes. It's not just a vacation. It's a chance to relax, connect, and feel understood in a way that is hard to find elsewhere. We're gonna sail out of Miami, and the cruise includes stops in CocoCay, San Juan, Saint Kitts, and Nevis aboard the stunning Celebrity Beyond. This ship is chosen for its comfort, accessibility, and exceptional amenities. You're gonna enjoy a welcoming environment surrounded by others who get life with type one diabetes. I'm gonna host diabetes focused conversations and meetups on the days at sea. There's thoughtfully designed spaces, incredible dining, and modern amenities all throughout the celebrity beyond. Your kids can be supervised, there's teen programs so everyone gets time to recharge. Not just the the kids going on vacation, but maybe you get the kickback a little bit too. There's gonna be zero judgment, real connections, and a whole lot of sun and fun on juice cruise twenty twenty six. Please come with me. You're going to have a terrific time. You can learn more or set up your deposit at juiceboxpodcast.com/juicecruise. Get ahold of Suzanne at cruise planners. She will take care of everything. Links in the show notes. Links at juiceboxpodcast.com. Have a podcast? Want it to sound fantastic? Wrong way recording.com.
#1818 Windy City Independence - Part 1
Scott shares his Facebook group moderation philosophy before Lindsey discusses her type 1 diagnosis at 14, how body image masked her severe weight loss, and her early diabetes burnout.




















Key Takeaways
- Diagnosis Symptoms Can Be Deceiving: Lindsey's initial severe weight loss and thirst at age 14 were masked by a desire to be thinner, highlighting how easily classic Type 1 symptoms can be misunderstood by both the patient and their community.
- The Importance of Early Context: The first 24 to 36 hours post-diagnosis are critical. Lack of proper context or reassurance about what life with Type 1 looks like can cause immense, unnecessary anxiety for the patient and their family.
- Burnout Often Follows the Desire for Independence: Taking on too much diabetes management too quickly (especially as a teen trying to prove independence) can quickly lead to burnout and frustration with the disease.
- The Spotlight Effect: Many teens downplay their diabetes or avoid using visible devices (like pumps or CGMs) because they feel like "everyone is watching," even though, in reality, most people aren't paying close attention.
- Community Moderation Requires Kindness: Online diabetes communities thrive when members remember to engage with empathy. Disagreement is natural, but maintaining a safe, kind environment is essential to keeping the space helpful.
Resources Mentioned
- Juice Box Podcast - Small Sips Series
- US Med: usmed.com/juicebox or call (888) 721-1514
- Eversense 365: eversensecgm.com/juicebox
- Tandem Diabetes Care (Tandem Mobi): tandemdiabetes.com/juicebox
- Juice Cruise 2026: juiceboxpodcast.com/juicecruise
- Wrong Way Recording: wrongwayrecording.com
Introduction and Small Sips
Scott BennerFriends, we're all back together for the next episode of the Juice Box podcast. Welcome.
LindseyHi. My name's Lindsey, and I've been a type one diabetic for about twelve years now. I'm 25.
Scott BennerIf 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 100 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 rather 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. 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.
Sponsor Messages
Scott BennerThis episode of the JuiceBox podcast is sponsored by US Med, usmed.com/juicebox, or call (888) 721-1514. Get your supplies the same way we do from US Med. Today's episode is also sponsored by the Eversense three sixty five, the one year wear CGM. That's one insertion a year. That's it. And here's a little bonus for you. How about there's no limit on how many friends and family you can share your data with with the Eversense Now app? No limits. Eversense. The podcast is also sponsored today by the Tandem MOBI system, which is powered by Tandem's newest algorithm, Control IQ Plus technology. Tandem MOBI has a predictive algorithm that helps prevent highs and lows and is now available for ages two and up. Learn more and get started today at tandemdiabetes.com/juicebox.
Moderating the Facebook Group
LindseyHi. My name's Lindsey, and I've been a type one diabetic for about twelve years now.
Scott BennerLindsey, how old are you?
LindseyI'm 25.
Scott Benner25. Lindsey, would you like to play a game with me? It's new. I call it help Scott moderate Facebook.
LindseySure. Okay.
Scott BennerAlright. Ready? Drum roll. I'm not sure if I just noticed since my youngest was diagnosed, type one in August, but it feels like more kids are being diagnosed. Now let me just say this. It's always the same. I've been around this forever and ever. Whoever looks up one day, they're like, oh, it feels like this is happening a lot later. I'm hearing about it a lot. Like, sure, you're hearing about it a lot. Your kid was just diagnosed. You're online. The algorithm is feeding you nothing but type one content. Of course, you're hearing about it a lot. Also, you know that thing, Lindsay, when you're out in the world and you see a car that you've never seen before and then suddenly you see them everywhere?
LindseyYep. Exactly.
Scott BennerSame idea. Okay. So this conversation goes very well. First of all, I'm a big fan of letting people talk. I like people right, wrong, or indifferent to be able to speak. Doesn't matter to me. Right? Mhmm. Now here's where this is going to go off the rails very quickly. We all know it's gonna go off the rails very quickly because why? You know why, Lindsay? Let's test you. Why? Well, some people are gonna see this as code for, hey. The COVID's given everybody type one diabetes. So some people are gonna see that as code for, I would like to say that COVID has started type one diabetes, and some people are gonna see this code for, I'd like to say that the COVID vaccine's not necessary. Anyway, it just brings out everyone's crazy.
LindseyRight.
Scott BennerI have no opinion about this one way or the other, Lindsay. I'm just moderating the group. Yes. One person says, oh, I think the same. Also diagnosed in August, I think it's environmental. Yes. Of course, it's environmental. You're being poisoned with type one diabetes by the lead in the paint or the Mhmm. The hooks that your pictures are hung by or what. I I don't know. Also, I don't know that it's not environmental. Not the point. This is just how the things go. Then someone says, well, somebody told me COVID did this, which really what somebody told them if they were spoken to by a reasonable health care professional is that viruses can sometimes be the precursor to a type one diabetes diagnosis. COVID was a virus. Did you get COVID? Yeah. And then they go, COVID did it. It's a bit of a leap. You understand? They missed a lot of the nuance in the middle, but okay. Now somebody who understands all this is inevitably gonna come in and explain it, But they're going to have had one too many go rounds on the Internet with this, and their crazy is gonna come out too. This is also happening. And this is a very reasonable people that I know in here, like very reasonable people. Virus this person says COVID is a virus. Viruses can trigger things. It's not a conspiracy theory. Blah blah blah. But to that person, I would say, no one said it was a conspiracy theory. You read into that in the thing. So now I have to take down a very reasonable comment by a reasonable person. Right? I don't wanna do that. Yeah. So I kinda go like, okay. Let's let people talk. Right? Now a little sidebar, Lindsay. This is boring to you because, children don't like jobs, and I still count you as a child. And I hope you do too because you're young. Yes. Yeah. Yeah. You feel like, yes. Don't worry. I'm a kid. I don't wanna be in charge of anything, please. So this morning, I've already had to make a little bit of a post because there's times of the year, times of the day, and times of the week when people lose their minds, Lindsay. Some of these times are right after Thanksgiving, the entire time leading up till Christmas, the days after Christmas. Those are crazy times. Crazy time is also Friday afternoon, which we also call drink o'clock. Drink o'clock also happens around 9PM eastern time. Most days during the week, there's times when people get a little crazy. Okay. So Scott has to step up once in a while and say, hey, everybody. Let's try to remember what your kindergarten teacher told you and be nice to everybody. Okay. Now this sounds like everyone's going crazy. That's not what's going on, Lindsay, and we'll get to you in a second. I'm sure what you have to talk about is very important. But it's just that once in a while, a handful of people let their crazy out, and then a few other people go, oh, I didn't know we were letting out our crazy. And then, like, they let it out too. It's just a little steam, just letting off a little pressure. You know what mean? Nothing wrong with it. Yep. We need to remind everybody to be cool. So I actually just did this this morning because I can smell crazy train a comet. You understand? Yes. I've been doing this a while. It's coming around the corner. I hear the whistle of choo choo. It's gonna crest the mountain. I'm gonna see it in a second. It's about time for crazy training. Everyone's hope for the new year is gone. January is over. They now realize their lives are exactly the same as they were going to be last year and will probably not change because they're not willing to do or can't do whatever it is they want to do to make a change. So I stepped in. Lindsay, may I redo what I wrote?
LindseyYes.
Scott BennerThank you. And, we will get to Lindsay. I said, kindness is my line. I see this community as something I take care of, not control. People show up here with different experiences, strong opinions, and real emotions. Disagreement and criticism are part of that. They're allowed, expected, and healthy. It means people care enough to engage. We want that. I step in quickly when conversations become unkind, personal attacks, harassment, or cruelty. They don't belong here, and, thankfully, those situations are few and far between. More often, I say something when people are unkind without realizing it, Poor communication or inability to see the other person's perspective is usually the culprit, an easy fix 99% of the time. I mean everything I'm saying here. I go on to say I may also step in when incorrect ideas drift towards being potentially harmful. This isn't about winning arguments or policing opinions. It's about protecting people from advice or narratives that could cause real world harm if taken at face value. Now listen. I don't get involved in that very often. Okay? Let's see. People have opinions. I'm fine with them having it. I actually say that here. I say that said, if you're gonna engage with other people, you need a reasonably thick skin. I am not here to protect anyone from their insecurities or deeply ingrained beliefs. I'm here to maintain a healthy stasis in the community. Now let's take a sidebar for a minute. Lindsay, I'm just gonna mark where I'm at so I can come back and finish reading. If you are right now listening and you think that everybody who took a COVID vaccine is crazy, you think I agree with you. And if you think that everybody who took a COVID vaccine was saving the world, you also think I agree with you. That's the sign of a nice down the middle moderation of a group. Okay? You don't really know what I think about those things. It's not important. What I think is you have an opinion, they have an opinion, there's the truth. It's hard to say what the truth is. Conversation gets us to it, but we do it nicely. In short, some people are going to say things you think are completely wrong, wildly off base, or somewhere in between. We're not here to stop people from being wrong. We're here to keep the space kind, useful, and intact. When you reply to those people, remember to be kind and communicate clearly in a way that you would appreciate if someone disagreed with you. Isn't this nice? To keep this space focused and useful, I don't allow political or religious conversations. Those topics tend to divide more than they help, and they often turn conversations into something less thoughtful and less useful. Drawing that line isn't about shutting down dissent. You're welcome to question, push back, disagree, and feel frustrated to work things out in real time. What matters to me is that as many people as possible feel safe enough to speak and respected enough to stay. If you disagree, explain why. If you're frustrated, say so. Just do it with kindness. And then I finish up strong here, Lindsay, with I'm not interested in spending my life explaining what amounts to the same advice most of us learned in kindergarten, so please be nice. I hope you agree. But if you don't, please know how little that means to me. Now, Lindsay, what I'm trying to say here is, what is wrong with everybody? Hold yourselves together for Christ's sake. That's me talking now, not the guy that moderates the board. Unbelievable. You're a young person. How old were you during COVID?
LindseyI was just about to turn twenty Twenty. When COVID happened. Yes.
Scott BennerDid it ruin your life?
LindseyI'll be honest. It didn't ruin my life like it ruined some people's. However, it definitely was a tough time. I'm sure it was a tough time for everyone.
Scott BennerYeah.
LindseyEveryone had a different experience. But, yeah, I was 20 years old. I had just graduated with my associate's degree in college, and I didn't get to technically graduate because of everything that was going on that year. Mhmm. So that was pretty much the only thing that really happened to me that wasn't so great with COVID.
Scott BennerOkay. Good. Do you find that people your age are arguing about COVID still? Do they speak about it? Does it ever come up? By the way, I had it three weeks ago.
LindseyOh, wow. Well, I'm glad or hope you're well now.
Scott BennerI'm fine. Everything is fine. Let me just say that. Got a little sick. I had the COVID. Everything's good. Good.
LindseyGood. Yes. I actually have never had COVID, or at least to my knowledge, I have not.
Scott BennerNo? Ever get a sniffly nose in the last year and a half?
LindseyI mean, you know, maybe I have. Like I said, like, I've had a sniffly nose here and there, but I haven't genuinely been sick
Scott BennerMhmm.
LindseyIn, like, a long time. So whatever maybe I have had it, maybe I let it go, and I was like, oh, maybe I should check. But then by the point, I was feeling better. I was fine. So I don't know. Anyways, no. I don't really hear it come up too often among people my age, but I know, like, my parents, they've always been talking about it. My grandparents, relatives, I see stuff online all the time. So yeah.
Scott BennerOkay. So I'm gonna say to this person, and I love this person dearly. They've been in the group for a long time. You read into the original posters intent. You can't preempt preempt is a word. Right? Yeah. These conversations by being equally unhinged in the other direction. There we go. That's me doing my job. My job sucks. Okay. It's also better than having a real job. For all of you who have a real job, I'm not complaining. I make a podcast. I run a Facebook group. Basically, my life is awesome. Now let me put my feet up and talk to Lindsay. Lindsay, let me just say what I think about COVID real quick in case it's been unclear to anybody. COVID is a virus. When it first came out, we didn't know what to do about it. It was very dangerous. Some people think that the ways that we handled it were good, and some people think in the ways that the government handled it were bad. I'm sure they're both correct. Anybody who's still talking about that, please see a therapist. Okay. Let's move on. So what did you say? You got the diabetes? How did it happen? Please just say I got COVID.
LindseyYeah. I
Scott Bennergot I'm teasing. I'm teasing. Teasing. Good.
LindseyBack in 2014.
Scott BennerIt would be great if it said, Scott, well, listen. My parents, they lived under electrical lines. We later found out it was a government plot to sterilize white men. And, anyway, it didn't work on my dad. It just gave me COVID, and that's why we live underground with a tinfoil hat on.
LindseyYes. No.
Scott BennerAnyway, sorry. Well, how old were you when you were diagnosed? How did it come up? What is your remembrance of all of it?
Sponsor Messages
Scott BennerToday's episode is sponsored by a long term CGM. It's going to help you to stay on top of your glucose readings, the Eversense three sixty five. I'm talking, of course, about the world's first and only CGM that lasts for one year. One year, one CGM. Are you tired of those other CGMs? The ones that give you all those problems that you didn't expect? Knocking them off, false alerts, not lasting as long as they're supposed to. If you're tired of those constant frustrations, use my link, ever since cgm.com/juicebox to learn more about the Eversense three sixty five. Some of you may be able to experience the Eversense three sixty five for as low as a $199 for a full year. At my link, you'll find those details and can learn about eligibility. Eversensecgm.com/juicebox. Check it out. I used to hate ordering my daughter's diabetes supplies. I never had a good experience, and it was frustrating. But it hasn't been that way for a while, actually, for about three years now because that's how long we've been using US Med. Usmed.com/juicebox or call (888) 721-1514. US Med is the number one distributor for Freestyle Libre systems nationwide. They are the number one specialty distributor for Omnipod Dash, the number one fastest growing tandem distributor nationwide, the number one rated distributor in Dexcom customer satisfaction surveys. They have served over one million people with diabetes since 1996, and they always provide ninety days worth of supplies and fast and free shipping. US Med carries everything from insulin pumps and diabetes testing supplies to the latest CGMs, like the Libre three and Dexcom g seven. They accept Medicare nationwide and over 800 private insurers. Find out why US Med has an a plus rating with the Better Business Bureau at usmed.com/juicebox, or just call them at (888) 721-1514. Get started right now, and you'll be getting your supplies the same way we do.
Diagnosis and Ignoring Symptoms
LindseySo I was 14 years old at the time, had just turned 14. I didn't know anything about diabetes. However, I lost an extreme amount of weight. I was constantly thirsty, constantly going to the bathroom, very tired, very weak. I remember vaguely before I got diagnosed, remember I was doing some sort of physical activity in my gym class, like running, and I could barely do it without, like, feeling like I was dying.
Scott BennerStruggling. Yeah. Yeah.
LindseyI was like, I I couldn't understand, but, you know, I was like, I don't know. Maybe there's just something going on with me. I know I've lost a lot of weight, but, like, I don't know why I feel so weak. Later on, I had some friends who were worried about me. They were worried I wasn't eating because of how skinny I got, and I was like, no. Just fine.
Scott BennerAt 14, you lost enough weight that by the way, boys and girls or girls?
LindseyMostly just my girlfriends. Okay. But there were a couple of my guy friends who also had made comments.
Scott BennerHave you known people by that age who had eating disorders by them? My daughter had known a couple of people who had been in treatment and stuff like that. Like, is that something girls are aware of at that age?
LindseyI mean, yes. They are.
Scott BennerOkay.
LindseyI did know a couple people.
Scott BennerYes. Your good friends came to you and went, hey. You okay?
LindseyYeah.
Scott BennerYeah. Okay. And you said And
LindseyI basically was like, yeah. I eat all the time. I'm fine. If anything, I feel like I've been eating more than usual.
Scott BennerI found the secret to life. Okay? So the rest of you, I know you're jealous, but I've been working it down with both hands, and I'm losing weight. I can't stop myself. Yeah. At that point, did you think, hey. That doesn't sound right?
LindseyI mean, like, it didn't, but, like, I was loving it. I mean At the same time, like, I love the idea that people are like, oh my gosh. You're losing weight. Because I'll be honest, when I was younger, I wouldn't say I was, like, extremely overweight or anything, but, like, before the teenage years, you you got a little extra, like, fluff on you, like baby fat or what whatever they say.
Scott BennerSo you felt like it was going the right way for you? You felt good
Lindseyabout it? Yeah. I felt like, oh, well, I'm just having a growth spurt. I'm losing weight. Like, this is normal. Like
Scott BennerPeople are like, what are you doing? You're like, well, I'm eating Doritos with Mike and Ikes on them, I dip them in chocolate milk. It's it's really, you should try it. Yeah. Yeah.
LindseyLiterally, I remember there was one time someone, don't know if it was a friend or a family member had told my parents. They were like, she looks like she's lost a lot of weight. Like, is she good? And then my parents were like, yeah. Like, I think she's going through a growth spurt, but she is really skinny. And I remember a week, there was this one time that my stepmom had offered me cupcakes. She's like, here, you can eat these. Like, you need to eat these. Like, you're skinny. You can have whatever you want. Like, whatever. And just how ironic it was later on figuring out that I had diabetes and only that was making it worse.
Scott BennerShe's doing the equivalent of, honey, you need a cheeseburger.
LindseyYeah. And right.
Scott BennerRight. So it occurred to her at some point, like, you can do this.
LindseyLike Yeah.
Scott BennerYou have room to grow here. Like yeah. But nobody ever goes, this is odd. You look sick. It's Enough to do something about it, I mean.
LindseyI was gonna say, it didn't really nobody noticed it. Like, it's almost like it happened so quick. And then all of a sudden, I remember my mom got a phone call from one of my teachers in school and said, hey. Just calling to check on you. Some of her friends have came to me thinking she has an eating disorder. She's gotten really skinny really fast. And that was when my mom was like, okay. Yeah. She has gotten really tiny, but she didn't really see anything wrong that I was doing. She didn't think I wasn't eating. She knew I was eating. My dad knew I was eating everything. But we did go to get a checkup after that because she was like, you know what? It is kinda weird. It's weird that she has lost this weight very quickly.
Scott BennerRight.
LindseySo then we go to the doctor's office, and we check my weight, all the things. And they tell me that I've lost over, like, 30 pounds.
Scott BennerWow. How tall are you?
LindseyI'm five seven, five eight ish. And I at this point, I was like, I think the lowest weight I got was, like, ninety eight, ninety nine pounds.
Scott BennerLindsay, you think you went from, like, one forty down to, like, in that range? One thirty, one forty? This episode is sponsored by Tandem Diabetes Care. And today, I'm gonna tell you about Tandem's newest pumping algorithm. The Tandem Mobi system with Control IQ plus technology features auto bolus, which can cover missed meal boluses and help prevent hyperglycemia. It has a dedicated sleep activity setting and is controlled from your personal iPhone. Tandem will help you to check your benefits today through my link, tandemdiabetes.com/juicebox. This is going to help you to get started with Tandem's smallest pump yet that's powered by its best algorithm ever. Control IQ Plus technology helps to keep blood sugars in range by predicting glucose levels thirty minutes ahead, and it adjusts insulin accordingly. You can wear the Tandem Mobi in a number of ways. Wear it on body with a patch like adhesive sleeve that is sold separately, clip it discreetly to your clothing, or slip it into your pocket. Head now to my link, tandemdiabetes.com/juicebox, to check out your benefits and get started today.
Body Image and Cultural Conditioning
LindseyI think it was, like, anywhere from twenty to thirty pounds. Wow. But yeah.
Scott BennerAt five seven, like, you're not a heavy person.
LindseyI wasn't heavy, but I don't I don't know. In my mind, when growing up because I don't know if I reached five seven quite yet or, like, maybe I was shorter before. I don't know. But I just remember I wasn't, like, the skinny girl. I was I was always, like, a bigger child, like, growing up. Like, I was always, like, the bottom of the pyramid whenever we would, like, do things as kids. Like, you know, like, those pyramids that you'd make with your friends. Like, I was always the bottom because I was the tallest or biggest. You know? So, like, I never considered myself small or skinny until this had happened to me.
Scott BennerYou also didn't consider yourself just fat or Yeah. Overweight. You just you you felt like you were just a bigger girl. Yes. I gotcha. No. I understand. Okay. Yep. Isn't it interesting how we think about that? Like, really, I have a daughter. Like, so if you're not skinny, then you're heavy, which is ridiculous because you sound like you were a very average weight.
LindseyYeah. Yeah.
Scott BennerAnd and build too, by the way. Like, can you help me dig in that as a girl for a second? Because I don't obviously have this context. Is it if you don't look like you belong on the cover of Cosmo, you weighed, like, an amount that doesn't get thought of well? I I I don't under like, the thinking. What's the thinking?
LindseyHonestly, yes. I feel like just media, no matter, like, what age you are growing up, like, you always see the tiny girls, tiny women. And even myself, even though, like, I am not considered, like, obese or overweight
Scott BennerRight.
LindseyAt that age, I still thought I was in my head back then, I considered myself before I got diagnosed with diabetes, I considered myself fat compared to some of my other friends that I may have been around that were tinier than me. And growing up, like, I know there was a couple girls that were very conscious about their weight and would say their weight out loud, and then me being the person I was and taller and bigger. I always did have a bigger weight than these girls growing up. So I did think of myself as bigger. I don't know if I ever considered myself fat, but, like, when you're growing up, there's just so many things going on. You hear so many things. You see so many things. There's all of these trends that go around, and you just compare yourself. At the end of day, that's what it is, is you're comparing
Scott BennerTell me something to use this as an example. Like, a curvy girl, hippie, chesty, but not fat. How do you think of that person? Now? Yeah. Am I painting a picture in your mind that you understand? Okay. So, like, curvy, like, more classically voluptuous, but no loose skin. Like, is that a fat person to you?
LindseyNo. Not at all.
Scott BennerWhat's the word you use there?
LindseyHonestly, when I think of a girl who's curvy, now with my mindset, back then, I might have thought of it differently
Scott BennerMhmm.
LindseyBack with, like, the trends and just growing up. But now, I think a curvy woman is beautiful. Mhmm. I would love to have that body shape. Everyone's body shapes are different, but, yeah, when I think of that shape, like a curvy body but no loose skin, like, that is ideal.
Scott BennerSo the weight's not the point? Because in my mind, that person weighs more than you probably did when you were 14 before you lost weight.
LindseyYes. Right. Yeah.
Scott BennerSo it's not the number then. It's the construction of the body and what it relays Kind of. Visually?
LindseyYeah. I guess, like, visually and I mean, I guess the number does matter when you compare it to others. Mhmm. Whereas, like, yeah, someone might not look a heavyweight, but maybe they are just because of their build, their body build. I learned that growing up, and I realized that now being 25, there are so many different bodies, and you could be any weight. And there's people who would never guess how much I weigh just because of my body build and how I look. You know? Like
Scott BennerI'm just I'm fascinated how the imagery impacts the words we use. Right? Because if you use, like, there's a model, Ashley Graham. Right? Like, she's big lady. Yeah. Right? Right. And hippie and, you know, chesty and by the BMI scale has extra weight and everything. But no one looks at her and thinks, oh, fat. Right. Because at her same weight and height, there are other people who would project a different vibe back to people. I don't know the right words to use and everything. But, like, what I'm saying is I wonder what it is visually that takes the number and throws it away, and I wonder what makes us react the way we react when we see different body styles, I guess, is my question. You know what I mean?
LindseyYeah. I honestly don't know. It starts at such an early age too that it's almost like you don't even remember why this means that to you or why fat or skinny is this or what the
Scott BennerRight.
LindseyThreshold is or, like, the, I guess, spectrum of what you think is considered fat or skinny.
Scott BennerExactly. Or even attractive or desirable or anything. Right? I believe that there's a key for every lock kind of feeling. Right? Like Yeah. I don't think that there's any body style, weight, size, look, tie, hair, color, whatever that somebody won't find attractive. Like, I I always think there's really, you know, a match for everybody.
LindseyYes.
Scott BennerAnd there are things that are thought of more classically, I guess, by the masses. But, you know, thinking about that, but then distilling it down into a 14 year old's mind who's not overweight, but who, when comparing themselves to whatever they're supposed to be is, is comparing themselves back to a model who probably weighs ninety five pounds. Mhmm. It's so interesting that that's where you compare yourself to. And you're Like, who knows what the pathway is to that? Like, what magazine cover you saw or what maybe what thing as simply as, like, what thing you heard your dad say
LindseyRight.
Scott BennerAt one point or another man in your life who was like, that girl's pretty or something like that. And then it, like, sticks in your head that
LindseyI think it does come down to that too. It's like something you may have experienced that you don't even remember or maybe you do. And I'll be honest, like, I did have, like, people in in my younger days, like, they would say, oh, like, you're bigger or, like, you're fat. Like, they have actually used the term fat. So I think in my head back then, I considered myself fat even though I really wasn't.
Scott BennerYeah. Because someone said it to you. Yes. And that's the word they chose because of all of their different experiences or ideas or whatever.
LindseyYep.
Scott BennerSuper interesting. It really is.
LindseyYeah.
Scott BennerI would never I'm using Ashley Graham as an example because I'm aware of who she is. Like, visually, I know what she looks like. I think that lady is really beautiful. Mhmm. It would not occur to me to describe her by her weight. It's interesting.
LindseyYes.
Scott BennerRight? Yeah. Yeah. Okay. So alright. Well, fun times.
The Hospital and Unclear Answers
Scott BennerSo that happens. You get diabetes. Yeah. But your mom takes the advice of, like, the phone call. That's awesome.
LindseyShe takes the advice of of the phone call, takes me in. We get a whole bunch of tests done. They take my blood work, and they check my sugar. And not knowing what an a one c even means or what it is, on their a one c machine, it said my a one c was 14.7.
Scott BennerWow.
LindseyNow I am like, what the heck does that mean? The doctor or the nurse, whoever was in there that read it, she, like, wide eyed looked at it, and I'm like, my mom was, like, kinda freaking out. She's like, what? What? And she goes, well, I don't know. And I'll be honest, this doctor's office, like, I don't think they are very knowledgeable in type one diabetes or diabetes at all because they didn't even they weren't confident in telling me whether I actually had diabetes or not. They said we are gonna send this information and test to another like, I don't even know. At the time, I think maybe an endocrinologist or maybe Helen DeVos where I live. I live in Michigan. And they were just saying, like, I think she might have diabetes. And when I heard that, I was like, what? Like, I was so confused because although I did think back then, like, before diabetes, I did think I was considered fat or overweight. Oh. I didn't understand how I was losing weight, and told me I had diabetes because anything I've ever heard of diabetes was knowledge of type two.
Scott BennerRight. And it meant in your mind, how could I be thin and have diabetes?
LindseyYeah. And then I'm over here, like, okay. Yeah. I haven't been eating the best, but I haven't been eating terrible.
Scott BennerMhmm.
LindseyAnd I'm 14. Like, I it was very confusing. So, basically, they start asking me questions like, alright. Have you been thirsty? Have you been going to the bathroom a lot? Have you been like, just going over all the symptoms, and I'm like, yeah. Yep.
Scott BennerI think there's cameras in our house, mom.
LindseyYeah. Yeah. So now I'm starting to freak out because now it sounds like, okay. It's not just a they don't know yet if I have diabetes. It's a pretty for sure thing that I do have diabetes. But the funniest thing about this is they sent me home, and they said that we would get a call maybe the next morning once results came back. And I was told, just don't eat any carbs or any sugar going home. So my mom was like, well, what does that even mean? I remember we went home, and we had these little turkey sausages. And I'm sure she made me, like, eggs, and I basically had, like, a breakfast for dinner type of thing.
Scott BennerYeah.
LindseyAnd I just remember going to school the next day, like, praying that it was untrue that I did not have diabetes and that, like, it was something else or they just messed up. Like, in my head, I just did not want this problem, and I just went to school acting as if, oh, no. It's gonna be fine. It's gonna be fine. But I remember at school, like, I just kept leaving my classroom to get drinks from the water fountain. Like and I just was like, there is something wrong with me, and I just didn't wanna believe it.
Scott BennerYeah.
LindseyAnd then I got a call maybe only, like, two hours into my school day, and they called me to the office. And my mom picked me up, and she goes, well, we are taking you to Helen DeVos, which is a place that is a children's hospital, and they have great endocrinologists there. And she said, we are taking you to Holland de Vos, and you have type one diabetes, and they have to treat you. So I remember after that just crying on my way to the hospital. I just remember crying the whole way there just, like, so devastated even though I had no idea what even type one was.
Scott BennerSure. Well, I mean, somebody's telling you something's wrong and and you're hearing words that diabetes, you're probably like, oh my god. Like, old people have that. Yeah. Yeah. Yeah. Right? Like, there's isn't that interesting that how much that lack of context impacted that first, like, twenty four hours for
Lindseyyou?
Scott BennerYes. What do you think in hindsight? Now you've had diabetes a long time. Right? So in hindsight, what could have somebody have said to you in that office or in that car that would have made this a better experience, you think?
LindseyI will say my mom was very positive even though, like, I could tell she was stressed out. She just kept telling me it's gonna be okay. We're gonna be fine. We're gonna figure this out. We're gonna do this together. Like, she was very positive and just tried to keep calming me down, but it was very hard for her because she also didn't know anything about type one diabetes. So she didn't really have any answers for me. And in the doctor's office the day before, I really don't know what anyone could say to me because I really just had no knowledge. I I mean, I guess I just wish someone would have said, your life isn't, like, gonna end after this. Like, it's gonna change, but it's not gonna be the end of the world for you.
Scott BennerRight.
LindseyBecause in the moment, I thought it was. I thought, oh my gosh. My life is changing, or it's gonna be a complete one eighty, which, like, don't get me wrong. It was, but now looking back at it after dealing with it all these years, I just think to myself, okay. But I'm here, and I'm okay.
Scott BennerYeah.
LindseyAnd I still live a great amazing life.
Scott BennerIt was different, but not different in the way you were imagining when you didn't have any context for it.
LindseyYeah.
Scott BennerRight. So somebody's gotta say to you then, hey. Listen. You have type one diabetes. You might have heard of diabetes. It's not that type two that you're talking about. This one's, you know, autoimmune related. You know, we'll figure out all that later, but for now, just know that we're gonna get everything straightened out. You're gonna have to take insulin. You know, there's a number of different ways to use it. We'll walk you through that in a while. Tons of people live great with type one diabetes. It's not a thing that's gonna change your life. You know? Do you have any questions? Do you think that would have been more helpful?
LindseyYeah. I think it would have. Yeah. And I definitely got those answers once I got to the hospital.
Scott BennerYeah.
LindseyThey were very much more knowledgeable in type one than my doctor's office that I went to here. Yeah. It just occurs to
Scott Bennerme that I've heard enough of these stories, right, where there's always an hour or a day or, you know, a week where people are, you know, disconnected from good information in the beginning. I mean, it's understandable. I mean, you listen to your story, nobody did anything wrong. You know what I mean? Like, it just unfolded the way it unfolded. Yeah. But still, it it's the part you think about. You know, you said, let me tell you about my diabetes. You could have started with at the hospital this happened or on the first day when we got home. But when you're telling that story, you're digging into those hours, I'm assuming because they were meaningful to you.
LindseyYes. They were. Yeah. Yeah. Definitely. It's just like one of those moments in my life that definitely are just like ingrained in my brain.
Scott BennerAnd I don't think doctors realize that that first thirty six hours of your story is so impactful and that nobody tried to contextualize any of it for you, and that's probably why it's impactful to you.
LindseyYes. Just like the unknown. Yeah. I think that's why.
Management, Burnout, and the "Spotlight" Effect
Scott BennerThat's my point. Anyway, alright. They get you in the hospital. They fix you all up. They send you home. What do they give you? They give you the insulin pump, needles, a pen, CGMs. What did you get?
LindseyI got pens. I just use pens and just use a regular glucose monitor and prick my finger to check every time.
Scott BennerHow long ago? Twelve years?
LindseyYeah. Yeah. About twelve years. Yeah. Going on twelve years.
Scott BennerAnd did you eventually end up with other tools, or did you use those for a while?
LindseyI used those for about well, I actually used them for a couple years. I did get a CGM, one of, like, the old, like, Dexcom g fours or whatever they had. I remember using those, but then I remember insurance companies, like, it was very hard to get ahold of those things. So it was, like, on and off. Sometimes I would wear Dexcom, sometimes I wouldn't. But then it came down to the pump, the insulin pump, if I wanted to be on that. They asked me a year after if I wanted to get on it, and I was totally against it. I did not want anything connected to my body. I don't know why I was so against it, but I was. And then couple years later, 2018 going into 2019 is when I got my first insulin pump.
Scott BennerOkay.
LindseyAnd then I got back on the Dexcoms.
Scott BennerThat's, like, six years into it.
LindseyYeah. Well, I will say it was, like, five. Like, 2014, '20 2018 going into 2019.
Scott BennerI like it when people do that. I'm like, it's like six years. You're like, no, Scott. Not six. You silly, silly man. It's five.
LindseySame thing. Yeah.
Scott BennerYeah. So about halfway. You describe in your note that you experienced burnout. When's the first time that happened to you?
LindseyI would say probably year two is when I actually had burnout because the first year, we were so on top of everything, but my parents were helping me so much.
Scott BennerMhmm.
LindseyAnd they were doing a lot of the work. And I was letting them, but I also wanted to be independent and show that I could do everything on my own. And I think I took on a little bit too much too fast because I wanted to.
Scott BennerRight.
LindseyAnd I didn't realize, oh, I'm literally gonna have this for life. I'm doing this by myself for life.
Scott BennerPace yourself, Lindsay.
LindseyYeah. I should've let my parents do a lot more for me than I let them. I wanna say after, like, the first year, was like, yeah. Just let me handle everything.
Scott BennerCan you tell me a little more about what made you feel like you wanted that separation?
LindseyI really struggled with everyone talking to me about diabetes all the times. Like, when I was first diagnosed, it was, like, just the number one thing, like, how's your sugar? What's your sugar? From my parents or my friends. And it just got kind of, like, annoying knowing, like, that they were kinda in control of everything, and I wanted to take that control back. I hated just, like, having to write everything down and them having to ask me everything and, like, write my little logbook what my sugar was and what I ate that day. I just remember, like, hating having to relay the information to them. I just wanted to do it myself.
Scott BennerToo much diabetes, and you don't need people reminding you constantly.
LindseyYeah. It was it was my life. Like, the first, like, few years, it was all I was known for was diabetes, and I actually hated that.
Scott BennerThat's how it felt to you. Do you think that was how it felt to do you think it was true? Do you think did people shift in your life and stop seeing you and only see the diabetes?
LindseyNo. I I think it was just in my head, but I will say, like, I was one out of the two people in my entire high school that had type one. Oh. So nobody knew. So, like, when I was, like, that second person that have it at my high school, it was like, woah. Like, everyone just thinks of me as, okay. The girl with diabetes, the girl that, like, leaves right before lunch to do her, like, blood sugar checks and insulin before lunch, stuff like that. It was just like a thing, and I also think that's why I didn't want the insulin pump for so long too. I was like, I like to be discreet, just take my shots and stuff. I didn't want people seeing
Scott BennerYeah.
LindseyLike, gadgets or whatever.
Scott BennerI don't know if I've told this story. I haven't heard before, but when my son was, like, I don't know, 12 or 13, and we went to a baseball game on Saturday, pretty far from our house. We were all done, and we stopped at this diner that I knew about on the way back. And this is a sidebar, Lindsay. I knew about the diner because I once had lunch there with the film director, Kevin Smith, because it was the diner in the town where his little film office was. Red Bank, New Jersey for anybody who was interested. And I knew the diner, I thought that was cool. And so we stopped there to have, you know, it's an old New Jersey diner. And they sat us down at a table in the middle of the room. So imagine booths around three walls and then two tables in the center. Right? So there's enough room to walk around the freestanding tables, and there's booths that go down three sides of the wall. And they put us at the table in the middle. And I noticed after being there for a few minutes that my son was uncomfortable. And I asked him why, he said, I don't like sitting here. Everyone's looking at us. And I said, no one's looking at us. Like like, people are eating their lunch. They're talking to each other. I'm like, look around. No one's looking at us. I'm like, you feel like they are. I understand. You feel like you're on a stage and people are listening or and looking, but they're really not. Like, really pay attention for a minute. I was like, people can barely pay attention to their own lives. They're not looking at you. And it made them feel better. And so my question to you was, were people looking, or did you feel like they were looking?
LindseyI probably just felt like they were looking.
Scott BennerOkay. Alright. So you were not experiencing people, like, walking by and going, there's Lindsay, the girl with diabetes, and pointing and shunning you. That wasn't happening.
LindseyNo. Definitely not. But, like, it definitely was, like, a thing. Like, everybody knew I had type one diabetes.
Scott BennerTo keep this going a little longer, my son was in a baseball uniform. He was the only one not dressed like every other person walking down the street. Like, I'm sure people did look up and go, oh, look. That kid must have come from a baseball game. But they weren't then going, what an ass. Like, they were just like you know? But I take your point. So people are aware of this. You know they're aware of it because there's so few people with diabetes. You are ducking out here and there. But whether they're actually looking and talking or not, it really doesn't matter to you. Right? Like, it still feels the same one way or the other. Yes. Right. Okay. Alright. And you think that kept you off a pump for a while as well?
LindseyIt did. I do remember one experience too when I had a Dexcom on during class, and I remember my Dexcom was beeping that, like, my sugar was either high or low. I can't remember. But I just remember a teacher I don't know if it was a substitute or a teacher, but they had said, phone's off. Somebody turned their phone off or I'm taking it away. And then I remember the whole class had my back, and they go, that's her diabetes. And they, like, they, like, yelled at the teacher for me.
Scott BennerLady, you're gonna feel bad in a second. Wait till we do this. Finally, we've got the upper hand as a group of small children.
LindseyRight. So, like, don't get me wrong. I love that they all, like, knew about it, had my back, knew that that noise was not my phone, but, like, my Dexcom notification. But I hated the attention from it, and I oh, that just turned me off. I'd after that point, I remember I silenced my Dexcom alerts because I hated the attention the sound brought to me.
Scott BennerYeah. That's not happening again to me.
LindseyYeah.
Scott BennerThat hurts you too. Right? Because you can't hear the damn thing beeping.
LindseyYep. And then I let high sugars go or maybe let my sugar get too low. Mhmm.
Scott BennerAll to keep people from either sticking up for you or being aware of you.
LindseyYeah. I almost like I do remember I almost kinda just wanted to forget or think that I didn't have diabetes. I remember, like, in the beginning, I tried really hard to make it seem like, oh, I don't really need to do that much. Like, I can still live a normal life because I remember my friends, parents, relatives, everybody that I was around was just worried about it. Worried about being around me, and I had I hate scaring people. So I think I tried to play it off, Like, oh, it's really, like, not that big of a deal, which it is, but,
Scott BennerOh, that's interesting. You downplayed the impact diabetes had on your life so that other people could feel comfortable?
LindseyKind of. Yeah. I will say kind of, in a sense, just because I didn't want people to be scared of, like, what could happen to be around them.
Scott BennerThen that focuses them on you more?
LindseyNot necessarily. But
Scott BennerYou ever go to therapy? This is we're getting pretty deep here. This is going
LindseyI know we are. I'll be honest. I don't go to therapy, and I should.
Scott BennerLike He's like, listen. It's on my list. Okay?
LindseyIt's on my list. But
Scott BennerBut it's an interesting insight from you that you knew that your diabetes was making other people uncomfortable.
Closing and Outro
Scott BennerThis episode was too good to cut anything out of, but too long to make just one episode. So this is part one. Make sure you go find part two right now. It's gonna be the next episode in your feed. The podcast you just enjoyed was sponsored by Tandem Diabetes Care. Learn more about Tandem's newest automated insulin delivery system, Tandem Mobi with Control IQ plus technology at tandemdiabetes.com/juicebox. There are links in the show notes and links at juiceboxpodcast.com. Are you tired of getting a rash from your CGM adhesive? Give the Eversense three sixty five a try. Eversense cgm.com/juicebox. Beautiful silicone that they use. It changes every day. It keeps it fresh. Not only that, you only have to change the sensor once a year. So, I mean, that's better. US Med sponsored this episode of the Juice Box podcast. Check them out at usmed.com/juicebox or by calling (888) 721-1514. Get your free benefits check and get started today with US Med. Hey, kids. Listen up. You've made it to the end of the podcast. You must have enjoyed it. You know what else you might enjoy? The private Facebook group for the Juice Box podcast. I know you're thinking, oh, Facebook, Scott, please. But no. Beautiful group, wonderful people, a fantastic community. Juice Box podcast type one diabetes on Of course, if you have type two, are you touched by diabetes in any way, you're absolutely welcome. It's a private group, so you'll have to answer a couple of questions before you come in. We'll make sure you're not a bot or an evil doer, then you're on your way. You'll be part of the family. I can't thank you enough for listening. Please make sure you're subscribed or following in your audio app. I'll be back tomorrow with another episode of the Juice Box podcast. How would you like to share a type one diabetes getaway like no other? Join me on Juice Cruise 2026. You may be asking, what is Juice Cruise? It's a week long cruise designed specifically for people and families living with type one diabetes. It's not just a vacation. It's a chance to relax, connect, and feel understood in a way that is hard to find elsewhere. We're gonna sail out of Miami, and the cruise includes stops in CocoCay, San Juan, Saint Kitts, and Nevis aboard the stunning Celebrity Beyond. This ship is chosen for its comfort, accessibility, and exceptional amenities. You're gonna enjoy a welcoming environment surrounded by others who get life with type one diabetes. I'm gonna host diabetes focused conversations and meetups on the days at sea. There's thoughtfully designed spaces, incredible dining, and modern amenities all throughout the celebrity beyond. Your kids can be supervised, there's teen programs so everyone gets time to recharge, Not just the the kids going on vacation, but maybe you get the kickback a little bit too. There's gonna be zero judgment, real connections, and a whole lot of sun and fun on juice cruise twenty '26. Please come with me. You're going to have a terrific time. You can learn more or set up your deposit at juiceboxpodcast.com/juicecruise. Get ahold of Suzanne at cruise planners. She will take care of everything. Links in the show notes. Links at juiceboxpodcast.com. Have a podcast? Want it to sound fantastic? Wrong way recording.com.
#1817 Transplanting Islet Cells with Piotr Witkowski, MD, PhD
Scott talks with transplant surgeon Dr. Piotr Witkowski about islet transplantation, early results with tegoprubart, regulatory roadblocks, realistic timelines, and where this research could lead. Learn more (Best on a laptop or desktop).
Companies that Support Juicebox
Key Takeaways
- Regulatory Hurdles: Pancreatic islet transplantation is currently restricted in the US because the FDA regulates islets as a drug, requiring rigorous phase trials, unlike other countries where it is treated as an organ transplant.
- A New Breakthrough: A novel anti-rejection medication, tegoprubart (delivered via IV), is showing remarkable success in protecting transplanted islets without the severe toxic side effects of traditional immunosuppressants like tacrolimus.
- Advocacy is Crucial: Efforts led by Breakthrough T1D (formerly JDRF) and patients aim to urge the Department of Health and Human Services (HHS) to adjust regulations, unlocking insurance reimbursement and making the procedure a standard of care.
- Managing Expectations: While current trials show promise for desperate patients—especially those suffering from severe hypoglycemia unawareness—this procedure is not yet a widespread "cure" and is not currently available for children.
- The Ladder to a Cure: The eventual goal of islet transplantation research is to refine the procedure to a point where no long-term immunosuppression is necessary, paving the way for future unlimited stem cell-derived islet therapies.
Resources Mentioned
- Dr. Piotr Witkowski's Clinical Trial Info: pwitkowski.org
- Contour Next Gen Blood Glucose Meter: contournext.com/juicebox
- Medtronic Diabetes (MiniMed 780G): medtronicdiabetes.com/juicebox
- Breakthrough T1D (formerly JDRF): breakthrought1d.org
- The Human Trial (Documentary): Mentioned as a highly recommended watch to understand the clinical trial process.
- Defining Diabetes Series: juiceboxpodcast.com (Click on Series)
- Wrong Way Recording (Podcast Editing): wrongwayrecording.com
Introduction & Meet Dr. Piotr Witkowski
Scott BennerHello, friends, and welcome back to another episode of the Juice Box podcast.
Piotr Witkowski, MD, PhDDoctor Piotr Witkowski, I'm a I'm a transplant surgeon and professor of surgery at University of Chicago.
As attending surgeon, as a director of pancreatic islets transplantation surgeon.
I've been doing kidney and pancreas transplant and running clinical trials in islets transplantation optimizing the procedure.
Scott BennerAt the end of this episode, the doctor will share a website where you can learn more about his trial and if you are eligible.
He asked me to let you know that the website is best viewed on a computer or a laptop.
Doesn't really work too well on a cell phone.
So when you head over there, use your computer, your laptop, stay off that cell phone.
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 episode of the juice box podcast is sponsored by the Kontoor next gen blood glucose meter.
This is the meter that my daughter has on her person right now.
It is incredibly accurate and waiting for you at kontoornext.com/juicebox.
Today's episode is also sponsored by Medtronic Diabetes, who is making life with diabetes easier with the MiniMed seven eighty g system and their new sensor options, which include the Instinct sensor made by Abbott.
Would you like to unleash the full potential of the MiniMed seven eighty g system?
You can do that at my link, medtronicdiabetes.com/juicebox.
Piotr Witkowski, MD, PhDI'm doctor, Piotr Witkowski.
I'm a I'm a transplant surgeon and professor of surgery at University of Chicago.
I was, educated and trained in Poland as a general surgeon, and I came to United States to do some research.
Initially, I I was involved in in research related to transplantation, different way to develop, the way to transplant organs without immunosuppression.
We call it tolerance.
I did my research at Columbia University in New York.
At the same time, I was involved in, in islets transplantation.
My mentor got a grant, and and we've been developing islets transplantation procedure or operate operation over there.
And then, after that, I accomplished training in in in a in a surgical training in transplantation, Columbia Presbyterian.
And after that, it was seventeen years ago when I came to Chicago as attending surgeon, as a director of pancreatic islets transplantation, surgeon.
I've been doing kidney and pancreas transplant and running clinical trials in islets transplantation optimizing the procedure.
So it's been seventeen years at the University of Chicago.
Scott BennerHow many iterations do you imagine that that procedure has gone through in that time?
Piotr Witkowski, MD, PhDHow many alternations?
Scott BennerHow many times has it been improved or updated or changed from where you started?
The Regulatory Hurdle of Islet Transplantation
Piotr Witkowski, MD, PhDSo this been a problem because pancreatic islets, which we isolate from deceased donor organs from pancreas, has been regulated in The United States as as a drug.
So, it was twenty six years ago when they they optimized eyelid isolation technique and eyelid transplantation procedure in Edmonton, Canada, achieving great results.
We wanted to adopt it right away, but then FDA said, no.
You have to test it as any other new drug in control environment and perform phase one, phase two, phase three clinical trials.
And when you do clinical trials, you have to do everything the same way because you testing the islets as a drug, which should be manufactured every time the same way.
And it took us over fifteen, eighteen years to accomplish those trials.
And over this time, we couldn't really modify anything only because it's been regulated as a drug.
Scott BennerThat time there was you trying to satisfy the FDA's ask?
Piotr Witkowski, MD, PhDRight.
Scott BennerOkay.
Piotr Witkowski, MD, PhDRight.
Over this time, the islet isolation technique hasn't changed.
Actually, it hasn't changed for twenty six years because we couldn't do it.
We have to do it in the one standardized way
Scott BennerMhmm.
Piotr Witkowski, MD, PhDTo satisfy FDA.
We've been changing and optimizing clinical part, the, you know, changing immunosuppression, replacing one immunosuppression with the other to to to achieve better results, but we couldn't really optimize.
And then because it was still all these years, it was clinical research, very expensive clinical research, the number of the patients which we were enrolling was was low, and therefore, we couldn't even modify the clinical part much.
Learn I mean, change a lot because of of limitation in in in in funding and and then in in patient number.
So the regulations which we apply in The United States and only in The United States has been not really helping the progress in the field.
In other countries, Canada, Europe, Australia, ILETS has been regulated as any other organ for transplantation, And and and it it means that every procedure is driven by the physicians, and and it can be developed changed all the time, optimized all the time for the optimal outcomes.
Scott BennerAre there other people around the world doing the same work and and able to move and iterate more quickly?
Piotr Witkowski, MD, PhDRight.
So for example, in Edmonton and Canada, they've done, over 700 eyeless transplant over the last twenty years.
In Europe, they did over thousand transplants, and they have this approved in England, in UK, in France, in in, in Switzerland.
It's a standard of care procedure based on the results from our clinical trials.
And we in The United States still cannot still have it approved because, again, it's a it's regulated as a drug, and it requires special conditions, validations, funding, liability, and it's it's way beyond the capability of of academic institutions.
Scott BennerTo reach that.
I I mean, I hear how frustrated you are.
I mean, did you go back to the FDA and explain to them why and what Yes.
Piotr Witkowski, MD, PhDSo for the last five years, we've been talk we've been publishing.
We've been presenting scientific data and advocating for adjustment in the regulations since for last five, six years.
First, it was COVID, which was the obstacle.
FDA was was focused on COVID.
After COVID, the regulators were not keen on any changes Mhmm.
Despite the fact that there is no no transplants as a standard of care.
No islets are available outside the clinical trials, and there was no progress.
So we've been publishing articles.
We've been we voice our concerns, and there was no really traction until recently when breakthrough t one d, the major foundation supporting type one diabetes got involved and now and our patients and social media, and now there is a hope that this this regulatory adjustment may happen.
Based on current law and regulations, the secretary of HHS has authority to adjust the regulations himself based on the feedback from FDA and HRSA, but but it can be done quickly and efficiently.
We are ready to work with regulators on proper adjustments, which will allow islets transplantation to be, on the one hand, available to patient as a standard of care, but still safe and an effective procedure.
So all the safeguards are are in place to reassure that it's done in the safe way.
Scott BennerIf health and human services made that change for you, how would that change what you're doing right now?
Piotr Witkowski, MD, PhDSo the major change would be this, that if islets are regulated as organ based on covered results, we can go to insurance and and show them the results.
And I know that they will, they like them because I already showed them to several medical directors of the insurance, and they said we will pay as long as regulations allows for this that your product is it's approved for clinical use.
So once the islets are regulated as organ, our product would be approved, and then it can be reimbursed.
Once it's reimbursed, we can do many more patients.
I mean, we can offer this procedure to many more patients, and then we can do many more studies and enroll patients faster and learn faster and progress the field.
And we can test the new ways, optimize the islet isolation, optimize the clinical protocols much faster, much more efficient, and and create progress.
Scott BennerSo right now, you're kind of stuck doing a clinical trial.
But if they changed it, you could just start doing the procedures, it would work for people?
Piotr Witkowski, MD, PhDOn one hand, we can start doing the procedure based on the our current experience
Scott BennerMhmm.
Piotr Witkowski, MD, PhDUsing approved medication.
At the same time, we can start continue doing clinical trials, and we will be testing new medication, less toxic, more effective medication is still clinical trials, but only a small fraction of those procedures will be paid by the research and everything else, the core of the procedure, which is standard of care, will be paid by the insurance.
Yeah.
So for example, with the same funding which we're getting from breakthrough t one d to transplant 10 patients, we can transplant 100 patients with the same funding.
So this will be a major change.
Scott BennerBe a little cynical for a second and tell me why you think set up like this and why it hasn't changed.
Piotr Witkowski, MD, PhDPeople who we talked to, were not focused on this.
They were always like, there are there are so many different problems.
We have to focus on something else.
I mean, what can I tell you?
Yeah.
There was no traction so far, but now there is traction.
And I think also that what's trigger changes now that we testing new medication, less toxic, patients are doing much, much better than before.
Mhmm.
So before was the general feeling is that Eyle's transplantation, well, they can help some patients, but there is so much side effects of of immunosuppression that the end of the day, it's not so beneficial.
So people were skeptic about the Ehlers transplant.
Now seeing how seeing patients with improved with reverse diabetes without side effects patients, people are excited about it.
So I think we brought it to the different level of efficacy and safety, and this triggers that that people are interested into this and see this as a chance for on the path to the cure.
Yeah.
And the ultimate goal is to to remove the need for immunosuppression.
But to get there, we have to go step by step.
We have to use better medication and then and then less medication, lower doses and and stopping the medication.
But it requires, you know, clinical testing before we are completely can can do it without immunosuppression.
Tegoprubart: A Breakthrough in Immunosuppression
Scott BennerSo is what you're saying is that the the tego prubart is that how do you say it?
Tego prubart?
Piotr Witkowski, MD, PhDTego I don't know why they come in with those names.
Tego prubart.
Yes.
Scott BennerTego prubart.
The understanding is that could be used in your procedure changes the feeling to people.
Piotr Witkowski, MD, PhDYes.
Scott BennerTaking it from, like, well, sure, we can do it, but you're gonna just trade one problem for a different problem.
Exactly.
Right?
Exactly.
And now it doesn't feel like that anymore.
Piotr Witkowski, MD, PhDRight.
Right.
Exactly.
So with with the tacrolimus, which is great medication, allowing us to keep the organ transplantation working for many, many years, but the trade off was that there was toxicity to the kidney, to the brain, to the nerves, to causing hypertension, causing diabetes.
So there there was a a trade off.
But we didn't have better medication over the last thirty years.
And now with tegoprobar again, these are the very preliminary results.
We have only 12 patients and and short observation, but all the patients do not have those side effects.
They don't have any side effects so far.
And they have, Ehlers transplant successful, and they they reverse diabetes.
So that's why you hear from patients that they feel cured because they don't feel burden of this therapy so far.
Scott BennerYeah.
What is the Tego doing that's allowing it to target this situation without suppressing the rest of your immune system so much?
Piotr Witkowski, MD, PhDRight.
Right.
So it is still suppressing the rest of the immune system, but the way it's suppressing is is more selective.
It's it's more accurate.
It's not, let's say, it's not as global as as the other medication.
The other medication, they're targeting many differ entire immune system and and many different checkpoints.
And then this medication, it's it's just one one main still main mechanism of rejection, but only one.
So the other is still working and and protecting patients and not causing the side effects.
So it's it's much more selective.
Okay.
And therefore, toxicity is so far, it's negligible.
Scott BennerMhmm.
But now this medication's being delivered every twenty one days through an IV.
Is that right?
Unlike other systems that will wait until your blood sugar is a 180 before delivering corrections, The MiniMed seven eighty g system is the only system with meal detection technology that automatically detects rising sugar levels and delivers more insulin as needed to help keep your sugar levels in range even if you're not a perfect carb counter.
Today's episode of the Juice Box podcast is sponsored by Medtronic Diabetes and their MiniMed seven eighty g system, which gives you real choices because the MiniMed seven eighty g system works with the Instinct sensor made by Avid, as well as the Simplera Sync and Guardian four sensors, giving you options.
The Instinct sensor is the longest wear sensor yet, lasting fifteen days and designed exclusively for the MiniMed seven eighty g.
And don't forget, Medtronic diabetes makes technology accessible for you with comprehensive insurance support, programs to help you with your out of pocket costs, or switching from other pump and CGM systems.
Learn more and get started today with my link, medtronicdiabetes.com/juicebox.
Contournext.com/juicebox.
That's the link you'll use to find out more about the Kontoor Next Gen blood glucose meter.
When you get there, there's a little bit at the top.
You can click right on blood glucose monitoring.
I'll do it with you.
Go to meters.
Click on any of the meters.
I'll click on the Next Gen, and you're gonna get more information.
It's easy to use and highly accurate.
Smart light provides a simple understanding of your blood glucose levels.
And, of course, with second chance sampling technology, you can save money with fewer wasted test strips.
As if all that wasn't enough, the Kontoor Next Gen also has a compatible app for an easy way to share and see your blood glucose results.
Contournext.com/juicebox.
And if you scroll down at that link, you're gonna see things like a buy now button.
You could register your meter after you purchase it.
Or what is this?
Download a coupon.
Oh, receive a free Kontoor Next Gen blood glucose meter?
Do tell.
Kontoornext.com/juicebox.
Head over there now.
Get the same accurate and reliable meter that we use.
Piotr Witkowski, MD, PhDSo far.
Right.
So far.
And, again, we had to start with something.
Right?
Mhmm.
So the the delivery is inter intervene intravenous infusion.
It's reliable.
This is something is done, you know, here in in in our infusion center, so we know is the liver properly.
But moving on, you know, the company is already working on subcutaneous infusion I mean, injection by the patients.
Mhmm.
And then the frequency on injection can change.
The dose was was just the with was just a start was was actually, the dose was just proposed.
We're using the proposed dose.
We can based on experience, we can learn that the dose might be too high.
Right?
And we may go with lower dose.
So the dose might be adjusted or needs to be higher.
We'll see.
But that's why I'm saying it's just the beginning.
But, eventually, the there is a a good chance that this medication will be given by the patients themselves at home.
Scott BennerMaybe no differently than how people give them GLP shots.
Piotr Witkowski, MD, PhDYeah.
Exactly.
Like, once a week or once a month.
Exactly.
Yes.
Scott BennerWhat do you think the time frame is for that?
Has has that company given you any idea?
Piotr Witkowski, MD, PhDNow the company
Scott BennerIs that Eladon?
Is that the name of it?
Piotr Witkowski, MD, PhDYeah.
The the company is Eladon, and they're working on this.
They know about it.
They're working on this.
They're getting ready.
It's hard for me to say when, but but it's not far.
It's not far.
Scott BennerIs it I know that it's not your company, but can I ask you, is there a way to you know, with people who have so many different autoimmune issues, RA, for example, do you think there'll be injections that maybe we'll be able to more surgically target other autoimmune issues?
Piotr Witkowski, MD, PhDYes.
Yes.
As you said, actually, the this medication was the first tested with other immuno ALS, other autoimmune disease.
And any immunosuppression used for autoimmunity we test in transplantation or anything developed for transplantation is tested there because the mechanism is is very similar.
So definitely very similar.
Maybe this way, the drug with the same mechanism developed by Sanofi, and they're testing this for autoimmunity, and now they're thinking to come back to transplant.
So it's not only Eladon.
It's gonna be Sanofi with very similar medication.
And they already has sub q formulation.
Scott BennerOkay.
Oh, do they?
Sanofi does.
Yeah.
Yeah.
So this could really change, like, the face of transplantation to
Piotr Witkowski, MD, PhDI feel that this is this is a major change after thirty years because this is what I exactly feel comparing when I see patients on tacrololus on daily basis after kidney, pancreas transplant.
I see those pay after the heart transplant, amount of work on us and the patients to adjust the dose.
And the patient needs frequent blood test to change and control the level of the medication, and then we're changing the dose up, down.
Mhmm.
Patient's getting confused.
And despite change those changes, patient experience side effects.
It's a lot of a lot of work, a lot of frustration.
And now in the study with tegoprubar, there is no adjustment in dose.
There is nothing.
Yeah.
We just shake hands.
We hug.
How is everything?
Everything is fine.
From this perspective, it can change.
Less toxicity, less side effects, less less work on the patient and physician side to adjust the the dose of medication to to to treat or prevent the the side effects.
So this will change not only islet, it will change the transplantation.
Of course, assuming that nothing bad will happen.
Right?
There there will be no sudden unexpected adverse event.
And I can tell you historically, this medication was developed twenty five years ago in animals, and the results in animals were amazing.
But when it was used for kidney transplant in first three patients, all of them develop blood clots, which immediately the study was closed, and this was something nobody predicted.
So it took twenty five years for this the same medication to be modified not to cause cause the blood clots, SSI defects, and now we can we can we can use it.
So this is just example that despite, you know, extensive testing in animals, something may happen in humans which we couldn't we couldn't predict.
So far, it's good.
Scott BennerRight.
Piotr Witkowski, MD, PhDSo we have patient the the the first patient, the longest follow-up, almost two years.
Wow.
And there is patients beyond two years in the kidney trials, and so far, so good.
For our patients, we will be extending the the tegoprobar therapy for the third year for the and watch them longer to get more experience and learn more.
Scott BennerBut it's a miracle that the company kept going for all that time after the blood clots.
Piotr Witkowski, MD, PhDRight.
Right.
I mean, they were persistent.
Scott BennerYeah.
Somebody really believed in what they saw.
Yeah.
Piotr Witkowski, MD, PhDYes.
And the reason is because we saw amazing things which we never seen before in animals.
So that's why we were so excited.
And and and the company and we and others believe that if we overcome the side effects, we can still benefit from this mechanism and and for low toxicity.
The Future of Islet Supply and Encapsulation
Scott BennerYou get over these humps.
Let's just say it's an approved thing and you can start doing as many of them if you want.
I mean, how many islet cells are actually available?
Like, how many people could you actually accommodate if it got to that point?
Piotr Witkowski, MD, PhDYou mean from deceased donors.
Right?
Before the stem cells.
Because we still, need as yeah.
This is the question where you're going.
Right?
The the limited, number of deceased donors, limited number of islets.
The goal to have the updated regulation and keep doing disease donor islets transplant is to help the most desperate patients improve their life, reverse diabetes, and learn and learn a lot and progress the field in order to to minimize immuno or eliminate immunosuppression.
Now in the meantime, of course, we want to help patients.
Now how many patients?
We are able to do do I mean, we are limited by the funding and the money.
There is a 1,000 pancreas transplant done every every year in The United States, and they're using the best organs from one perspective.
The organs the pancreas which we use for islets are different than organs used for whole organ transplantation, so it's not competitive.
So let's say I mean, you know, nothing will happen overnight.
Right?
But, like, today, we are the only active center.
City of Hope is another one doing one or two transplant, and we do 30 transplants.
So today, it's like 40 transplant a year in the entire country.
Yeah.
But we can do, let's say, a thousand.
Right?
So thousand is much more than than than 40.
Right.
It will progress the field, oh, extremely
Scott BennerMhmm.
Piotr Witkowski, MD, PhDIf we can do a thousand.
It's not as a solution for every type one diabetic.
Scott BennerRight.
Piotr Witkowski, MD, PhDBut we can sort it out the way to minimize immunosuppression when the cells when when the stem cells islets are available.
We can just combine this new stem cells islets, which are in unlimited supply with minimal immunosuppression or or no immunosuppression, which we will work out using disease on our islands.
Scott BennerSo if to paint a picture for people, if you kind of go back to where the doctor was talking about starting twenty five years ago and think of this as a ladder to an eventual cure, which is when people talk about it, you know, in everyday life, that's what they're talking about.
They're like, give me a pill that shuts this off and right and it ends.
Right.
This thing that you're doing right now is huge.
It's a big deal.
It's amazing at how well it's working.
But even if you perfect it, it's just another step on the ladder.
Is that right?
Piotr Witkowski, MD, PhDIt's another step on the ladder.
But what I want to highlight in this medication in animals Mhmm.
We were able to maintain the kidney and islets function only with one medication.
In the tegoprobar trials, we're using thymoglobulin.
We're using my my my 40 additional medication.
So that is more than tegoprobar to protect the islets.
We saw in animals that just tegoprobar can protect it, so there is space to minimize immunosuppression.
Now once we stop tegoprobar in animals, the organs will keep going for several months.
So tegoprobot provides some kind of modulation which may allow for tolerance for no immunosuppression, let's say, after a year or two.
Understood.
But in order to to do that, we need develop a new monitoring system of the islets gram function.
So once we start reducing the dose, we need to know if islets are being compromised or not before they're gone.
Mhmm.
We don't want to expose patients to lose islets overnight only because we lower the dose.
So in order to do it, we we need more.
We need tools to money better monitor islets function, which we don't have today.
But this is the ultimate goal just to do it the way that no immunosuppression in the long term is necessary.
Scott BennerIf there's an eventual end to this, do you think it's found through medication, or do you think it's found through encapsulation?
What do you think is the best way to put
Piotr Witkowski, MD, PhDSo, yeah, how I'm gonna put it.
Today, for cadaveric islets, they need a lot of blood supply instantly in order to survive.
Any encapsulation, any additional layer separating the islets from blood supply, and this is what capsules do Mhmm.
It's just killing the it's it's just compromising their survival.
So I do not believe that encapsulation is the solution.
Okay.
Because they need blood supply.
Now for the stem cells derived islets, they might be more resistant.
They may need less blood supply.
Maybe there are new materials.
Maybe it will happen.
But I know from the theoretical perspective, you are doing something opposite than you should.
Islets needs a lot of blood supply, and you should improve blood supply rather than limit the blood supply.
Therefore, I don't believe in an encapsulation immunosuppression.
Now genetic modification, people are trying to modify them so they're invisible to immune system and avoid this.
I think it's gonna be difficult because we know only small part of of biology, of human physiology, immunology.
We know something, but we don't know everything.
And e and we can overcome some obstacles which we know about, but there might be another pathway which we don't know today, which will be causing the rejection and destruction.
Scott BennerRight.
Piotr Witkowski, MD, PhDFor example, today, all this immunogenetic modification to make them invisible to immune system is basically targeting the the rejection, but not really helping from to protect from autoimmunity, which kill the islets at the very beginning.
So we're not sure how to gen what would genetically modify to protect them from autoimmunity.
Scott BennerRight.
Piotr Witkowski, MD, PhDSo it's not close.
It's far in my mind.
Yeah.
It doesn't mean we shouldn't try.
Scott BennerNo.
No.
Piotr Witkowski, MD, PhDOf course.
That's why I'm focused on on on tegoprobar because this is something we can have today and tomorrow to help the the most desperate patient.
Scott BennerFeels like a more quicker, more direct path to you.
Piotr Witkowski, MD, PhDYeah.
Yeah.
Yeah.
I mean, it's something something we can do now Tangible.
Before before the other stuff is developed and stuff.
Defining a Cure and Setting Expectations
Scott BennerAnd good for everybody else doing that other work.
But like you said, that's if you find a way to protect the cell but don't shut down the immune response, you could just end up with type one diabetes again with the new cells.
Yeah.
Yeah.
Yeah.
My gosh.
Let's shift gears for half a second.
I wanna ask you more of a kind of a big picture question.
Your work is getting shared online a lot right now.
And I think it's exciting, and I love that people are sharing what's going on.
But from my perspective, I'm a person who's been making this podcast for twelve years, and it's focused on helping people take good care of themselves.
I get worried sometimes that people see this and think, oh, it's all done.
They fixed it.
I don't have to take very good care of myself.
It's almost over.
I wanna know if you have that concern or and if you can speak to directly to those people and tell them what's the the realistic timeline between what's happening right now on your bench and that random person who is not having dire health issues right now showing up in an office, getting this procedure, not having to take insulin anymore.
Piotr Witkowski, MD, PhDNo.
No.
Absolutely.
Absolutely.
Patients should take care of themselves and keep themselves as healthy as possible that when one day the real cure is available, they will not have problems.
Right?
They will be still seeing, have a vision, don't have amputations, don't require amputation or heart attacks.
So no.
No.
Definitely, patients should should do the best they can to stay as healthy as possible when the cure comes one day.
What we do, I want to highlight, it will help the most desperate patients in a limited number until we get there.
And it's still I'm not saying five years.
It might be much longer.
Yeah.
So, no, this is just what you're seeing and hearing is just impression from patients who feel great.
Right?
Mhmm.
But we can apply it to everyone today.
Yeah.
We cannot.
We don't have the the means and and technology, and it's not safe for everybody.
Right?
Scott BennerWell, I thought I was gonna say, it's a small group of people from a highly curated group of people too.
Right?
Piotr Witkowski, MD, PhDYes.
Yes.
Yes.
So the outcomes are better and the patients are happy, but it doesn't mean we can offer this to everyone.
Definitely not.
And I'm not sure when, and and people should stay as healthy as possible.
Right.
Definitely.
Scott BennerThere is even even a world where if their health has waned and this becomes easy and plentiful, you could get your health outside of a range where you wouldn't be eligible for it if that was Yeah.
Piotr Witkowski, MD, PhDYeah.
Yeah.
And and and and you will not even if you get it, you will not benefit, know.
Scott BennerRight.
Piotr Witkowski, MD, PhDThe way you could, you know, without secondary complications.
Scott BennerMhmm.
What do you consider a cure?
Like, what would you be comfortable not saying functional cure or this is better than it was before?
No.
Piotr Witkowski, MD, PhDI mean, I would think the same way as as as most people think that, you know, take a one magic pill or one magic injection infusion, whatever it it is.
And be sure that I will never had diabetes anymore, and it will never come back, and I don't need have to worry about some side effects.
Right?
So so in my mind, this is cure.
Right?
So I'm I'm a surgeon.
Right?
So if I remove the gallbladder, I know there will be no gallbladder disease For hundred percent, there might be other problems in the disease, but no disease.
So yeah.
No.
In my mind, the ultimate cure is something which can reverse diabetes in the consistent way forever without any side effects.
Scott BennerRight.
And that's what a cure is to you.
Piotr Witkowski, MD, PhDYeah.
Scott BennerYeah.
I agree.
Piotr Witkowski, MD, PhDBut then I'm sorry.
But I don't want to diminish what patients are saying.
Right?
They feel cured because they were diabetic with all the downside of this, and now they don't have diabetes.
And today, they feel cured, but they fully understand that tomorrow it may come back.
Right?
So but they're just describing the moment of happiness.
Scott BennerDo you think the work you're doing will lead to a broader understanding of the immune system in general and maybe help us to quell it to keep autoimmune issues down in people in general?
Piotr Witkowski, MD, PhDDefinitely.
Definitely, we would we can we can learn how to how to manage.
But to me, it's still hard to comprehend that in twenty first century, despite all those things, we don't know why autoimmunity happens.
Yeah.
And it's not only type one, any type of autoimmunity.
We don't know why people has Crohn disease, why there is theory.
There is, you know, this and that, but nobody can pin can pinpoint one one reason.
Right?
So I think this would be a major breakthrough if somebody will figure out why autoimmunity happens in the first place.
Because if we know the reason, we can prevent it rather than, you know, finding a cure how to reverse it.
Scott BennerYeah.
That would be lovely.
I talk to a lot of people every I mean, every day I record with somebody and and, you know, ask them about other autoimmune issues in their life or in their family line, and you can see it plagues families sometimes, you know, for all
Piotr Witkowski, MD, PhDdifferent Yeah.
Scott BennerYeah.
There there
Piotr Witkowski, MD, PhDis genetic factor for sure, but it's not only.
Scott BennerNot only.
No.
Of course.
Piotr Witkowski, MD, PhDThe best example in my mind is the ulcer.
Right?
The ulcer, this in the stomach for many, you know, thousands of years or hundreds of years, it's been the disease, untreatable.
And people were saying, oh, you have ulcer stomach because you're stressed.
Right?
Who is not stressed?
And people are trying to explain and treat it until the bacteria was suddenly discovered, which is causing this.
And we treat the bacteria, there is no ulcer disease.
I just hope that there's one thing which can be discovered and removed, and we don't have autoimmunity.
This is my hope.
Scott BennerRight.
Piotr Witkowski, MD, PhDI know people look into bacteria, viruses, and genetics, and diet, and and that, and and it doesn't look like it's a one single thing.
Maybe there is, and we cannot see it or find it yet.
Scott BennerMhmm.
I mean, it's it's interesting when you're trying to figure these things out.
I find it helpful to remember that we can use general anesthesia to put a person unconscious and that science doesn't understand exactly how it works.
That that that makes me some that puts a lot of things in perspective for me while we're trying to figure this stuff out.
You know?
Piotr Witkowski, MD, PhDYeah.
Yeah.
No.
No.
And and again, I I I'm in, you know, research and and medicine and stuff.
And the more I'm learning, the more I know that we don't know stuff.
Yeah.
The more we we we don't know.
Scott BennerCan I ask you a couple of bigger questions?
So you're how old are you?
Piotr Witkowski, MD, PhDI'm, how old I am?
57.
Scott Benner57.
How do you set your lab up so that your work continues on after you?
Is there a process in place for that, and how much of new AI models are you employing in the lab?
Those are kind of my two, like, questions about how you get to the end.
Piotr Witkowski, MD, PhDSo you see, I can do too many things.
Right?
I have to focus on something.
So my focus is clinical trials, execution of the clinical trials, optimizing clinical trials, and patient care, the patients who participate in clinical trials.
Mhmm.
So I do not work in, in my lab in basic I don't have a basic science research.
I don't develop, you know, something completely out of nothing.
The thing which will stay, I mean, after me is my experience Mhmm.
Based on patient treatment and adjustment in pay.
We're learning every days.
We are yeah.
New things about it.
And my role is to, you know, share with others, publish, and so that others can can benefit and take it to the next level.
Scott BennerYou're sort of a an artistic mechanic.
You take the parts that are available right now in the world, and you go into the machine and do your best to put it back together.
Piotr Witkowski, MD, PhDYeah.
Exactly.
Scott BennerYeah.
Yeah.
That's interesting.
Do you think that there's a way to pass your knowledge on to other people?
Do you have, like, people working with you who are learning from you?
Piotr Witkowski, MD, PhDOh, yeah.
Yeah.
Definitely.
This is especially in surgery, this is how he's been, you know, traditionally that we learn from our mentors, especially in surgery because, you know, there's a lot of details which is not in the books, you have to see and experience, and you learn a certain way.
And it's funny.
When when I was learning from my mentor during my fellowship how to do the kidney transplant, he was obsessed with the details.
Mhmm.
And I was always like, come on.
We can do a different or easier way.
Every time I deviated from his technique, his, you know, elements of the surgery, every time I got into trouble.
And I was developing discovering, oh, that's why he was doing this way.
Right?
Yeah.
He already went through this and optimized this procedure, and to me, it was that without any sense why he's doing this until I learned hard way that this was just based on the experience of he say, oh, personal experience, and I guess his mentor.
Scott BennerRight?
Yeah.
Yeah.
Piotr Witkowski, MD, PhDSo so so I'm going back, and I'm teaching my fellows in obsessed way.
I'm telling you, do this way.
You can choose your way, but I'm telling you this is better.
And you can do what you want with that.
Scott BennerIt's a classic parenting problem.
How do I get them to just believe me and move on?
Piotr Witkowski, MD, PhDThey need to get burned at least once.
Right?
Scott BennerThat just seems to be the human way.
Yeah.
Yeah.
To the artificial intelligence, do you have a feeling that it can move the understanding we have of how medications work or what we're seeing in labs?
Like, do you think it'll speed it up?
Is the bottleneck human beings somehow?
Piotr Witkowski, MD, PhDI think so.
I think so.
I think it will it provides additional tool beyond our comprehension.
This AI has has enormous power better than our brain so they can discover some connections which we don't see or cannot see.
So so definitely, it has potential to to extend the our vision,
Scott Benneryou know,
Piotr Witkowski, MD, PhDvision where we are and where it can be.
Scott BennerYeah.
I'm excited for that really to for us to be able to dump the collective knowledge of this kind of thing into one place and have something considerate that is maybe more likely to consider something we haven't figured out before or be able to think it through to a different end or something like that.
Piotr Witkowski, MD, PhDAnd there will be always people who will look outside the box and discover something by chance or by mistake.
Right.
And and and this is great.
Right?
This is this is the nature.
Sure.
Or discover something by chance.
But having this this special power of analysis beyond our regular, you know, power, this is this is amazing, and I think it will be helpful.
Scott BennerYeah.
Also, not having to eat, sleep, go home, talk to your spouse, take care
Piotr Witkowski, MD, PhDof your
Scott Bennerkids, like all the other things.
Right?
Piotr Witkowski, MD, PhDYeah.
Yeah.
The Cost and Realities of Clinical Trials
Scott BennerCan I ask you?
You said how ex that it's expensive to do the procedure, and you only have so much money to do so many.
Is there a way to generally tell me what the bill is on doing one of these for somebody?
Piotr Witkowski, MD, PhDYeah.
If you count everything.
Right?
Everything.
Like, if there is a program which want to start doing transplants and support the facility, the personnel with one source of money.
Right?
It's a lot of money.
So and, of course, the more you do, the cost per procedure is lower, right, because of the a lot of common costs.
800,000.
Scott BennerOkay.
Piotr Witkowski, MD, PhDThis is the for one trial one patient.
Scott BennerAnd that would cover everything Everything.
Soup and nuts.
Piotr Witkowski, MD, PhDAnd everything.
Right?
Yeah.
So if there is a center who wants to start running the program and do 10 transplants, they need 8 millions.
Scott BennerJeez.
That's something.
That's a lot to go going.
Piotr Witkowski, MD, PhDEvery because if you think about it, everything cost, and it's not only people, it has to be clinical grade reagents.
And they cost 10 times more than regular reagents.
Right?
Mhmm.
And then and then there has to be oversight, quality control, and there is so many elements.
Cell processing, and then in patient care, and then hospital, and then the medication are extremely expensive.
Right.
So this is all adding up.
But, again but I'm not saying that this is how much insurance should pay for one transplant.
This is not what I'm saying.
Because then, again, if you do more, the cost is lower and stuff.
Right?
I'm just saying for somebody who is starting and and and or doing on the small scale This is how you need this money.
Yeah.
To do to do a few patients.
Right.
To do a few patients.
Scott BennerIf you wanna open up your own McDonald's, this is what's gonna start to get it going.
Yeah.
Yeah.
Yeah.
And and to do and to do 10 patients.
Piotr Witkowski, MD, PhDRight.
So So your your your first hamburgers will cost a $100.
Scott BennerRight?
Right.
Yeah.
And eventually, you'll get it down to to scale.
Piotr Witkowski, MD, PhDYeah.
Yeah.
Eventually, you can you can take everything down and yeah.
Scott BennerYou have how many people on the trial right now?
Is yeah.
Are you on your thirteenth right now or you up to 12?
Piotr Witkowski, MD, PhDNo.
So so we got funding only for 12 patients.
Scott BennerOkay.
Piotr Witkowski, MD, PhDWe could do more, but the funding is was 12, and we transplant 12.
Scott BennerOkay.
Piotr Witkowski, MD, PhDWe are waiting for ethics committee, our IRB approval to start the second trial sponsored by breakthrough t one d for 10 patients, type one diabetes with kidney dysfunction with tegoprova.
Right.
So today, because of tacrolimus toxicity nephrotoxicity, we cannot do patients with kidney partial kidney dysfunction because then we will kill their kidney completely.
Mhmm.
So we cannot help patients with kidney dysfunction today at all.
So those poor patients, they have poor diabetes, and they have already kidney dysfunction, and they cannot get pancreas or islets transplant at all.
So this will be first time because of no toxicity of tegoprobar that we will be offering this group of patients islet transplantation.
We hope that the reversal of diabetes will stop the progress of the kidney disease.
And who knows?
Maybe it will reverse.
Maybe the kidney function will improve as it's been suggested by by some scientists.
Scott BennerInteresting.
Piotr Witkowski, MD, PhDSo this is coming for 10 patients.
Yeah.
Scott BennerYeah.
The first round is about proving it out in relatively healthy, you know Right.
Specific candidates.
Now you're gonna
Piotr Witkowski, MD, PhDrelatively healthy kidney and other elements.
Right.
But still with the hypoglycemia unawareness and severe hypoglycemia.
Scott BennerMhmm.
Then you move on to a a different group of people who have another issue.
If it works with them, then that's even more
Piotr Witkowski, MD, PhDexciting.
Proof that we can reverse diabetes in consistent way, more consistent than before.
Because before with tacrolimus, depending on the center, eighty percent of patients were 60 of patients were completely off insulin.
So the benefit was to prevention from hypoglycemia.
But once we prove that we can reverse everyone Mhmm.
For at least one year, then we I think we can offer the the procedure to patient without hypoglycemia unawareness.
For example, with a one c over seven, when we know that the the they have a higher risk of secondary complication and reversing diabetes will be beneficial for them even if there are some potential side effects from immunosuppression.
Eligibility and Managing Expectations
Scott BennerWhat's the youngest person you've helped so far?
Piotr Witkowski, MD, PhDSo yeah.
So we have two we have, you know, one patient in the study who is 19, and I have another 19 year old.
So the problem with teenagers is that they usually, you know, they not compliant with oral medication.
Right?
So you do transplant.
They're doing fine.
You ask them to take pills, and then they decide not to do it.
And they have rejection.
They're losing.
So, traditionally, we wait until 26 and older when they're mature, and we can rely on them taking the medication.
Now this this specific patient has a tremendous family support.
And also what convinced me that this tegopropart is IV.
So I'm rely I'm relying that the family will bring bring the patient to us, and and the patient will be safe getting the medication in the right way.
Scott BennerAnd if they're not there, you'll know they're not there.
You can get them there.
Piotr Witkowski, MD, PhDRight?
Then we know if something is wrong, we are alarming patient with the parents and and stuff.
So the fact that this is IV, and it's a it's a main medication, and there's, you know, devoted parents.
And the patient is also dedicated.
Don't get me wrong.
Yeah.
Scott BennerHe has the support structure.
Right?
He's not college student somewhere living in a dorm somewhere alone without Mhmm.
Supervision, and and then he may he may just just lose it.
Piotr Witkowski, MD, PhDRight?
So so so not yet.
Scott BennerAs much as that is about their health, it's also about you and your trial and getting back the information that you need.
Piotr Witkowski, MD, PhDYeah.
Yeah.
No.
Of course.
We want good outcomes.
But what really pushed me was that this particular patient had no life.
He because of severe hypos and poor glucose control, he had no social life.
He didn't go to college.
He's just sitting at home with no life.
Yeah.
So the life was so severely compromised that that I decide to to help him and and, you know, his parents and him.
And
Scott BennerIs the tego pro bart, is it eligible to be used in children, like, or
Piotr Witkowski, MD, PhDis I mean, no.
No.
No.
It's still under development.
Okay.
So in gen as a general rule, the medication are tested in adults first.
Scott BennerOkay.
Piotr Witkowski, MD, PhDAnd once they approve in adults, then depending on the profile and risk benefit, they can be, you know, considered for children testing in children.
Yeah.
But it's a it's a separate path, separate testing after approval for the adult.
Scott BennerAnd that's a time in the future.
But for you personally, have you seen enough to feel comfortable using it in kids, or have you not seen enough yet?
Piotr Witkowski, MD, PhDNo.
Not yet.
No.
I have to highlight that as much as we have great preliminary results, it's still under rejection medication.
Yeah.
So we don't have toxicity on daily basis, which we see with other medication.
But there is still potential for skin cancer in the long term.
The long term overall immunosuppression side effects, which is the skin cancer or the the blood disease like leukemia.
So, no, there is still potential risk in the future.
And until we don't have real experience and data, definitely, we shouldn't go to children.
Scott BennerYeah.
I ask you some of these questions just so the people listening can understand.
Piotr Witkowski, MD, PhDThe people are.
No.
No.
We're having, you know, emails every day from desperate parents and asking when and how because they're desperate.
We understand this.
But but the message is it's not for children yet.
Eyelid transplantation, yeah, is not for children because we're using toxic immunosuppression.
Scott BennerRight.
Piotr Witkowski, MD, PhDAnd then, it's not justified yet.
The Human Element of Clinical Trials
Scott BennerTaking the science out of it for a second, can you tell me a little bit personally how it feels to see somebody have this burden lifted from them?
Piotr Witkowski, MD, PhDOh, this is amazing.
This is what's driving all of us entire our team, you know, when we best reward is when we can tell patients you can stop the the pump.
And I don't know if you saw the post from yesterday because we stopped the part the the the insulin on on patients few days ago.
And every time is the same is the same excitement when they telling us, you know, some patients, they they were one year old.
They don't they don't know life without insulin.
Scott BennerSure.
Piotr Witkowski, MD, PhDAnd and suddenly, they can live without.
And one of the first patient when we told her, she was, like, 57, all life diabetic, and we told her she was so so emotional about this, and we were then we will let her go.
And she was running on the stairs, she fell, and she broke her arm.
So we felt so bad about it, and we blame ourselves that
Scott BennerShe was so excited she fell?
Piotr Witkowski, MD, PhDThat she was yeah.
She was so excited that she fell and she broke her arm and she needed surgery.
Scott BennerOh.
Piotr Witkowski, MD, PhDSo we decide to keep the patient in the bed, in the room for some time or tell them over the phone.
Scott BennerOne of those, is everybody sitting down?
Yeah.
Yeah.
Yeah.
Piotr Witkowski, MD, PhDSitting down and and then sitting down for a while and not just let them go right away.
Yeah.
No.
No.
I mean, on the one hand, telling patients over the phone, it's a safe way to do it.
Mhmm.
But then we're missing the, you know, the celebration and the the excitement.
And and it's all it's rewarding for our entire team because I don't know if you know, when we bringing the the pancreas, the seasonal pancreas to us, it usually arrives midnight, 1AM, 3AM, 4AM.
And my team is working usually at night, isolating whole night, eight hours, ten hours, sometimes two pancreas in a row.
So so there's a lot of dedication in the team.
Yeah.
And they do on they do it on weekends as well.
When the good organ comes, we are twenty four seven, and these are the same people.
I have only one team.
So there is a lot of dedication here, but but, again, it's all stimulated by by seeing our patients happy.
And that's why that's why we share our our joy with others.
And then what was triggered at the beginning was that I understood that the general perception of Eyelis transplant is that they don't work.
They just hurt patients, and we shouldn't do it.
That's why we start posting that this is not true, and it can be helpful, and it it can be a path for better therapy or cure in the future.
Scott BennerI can't imagine how busy you are.
You and I have been scheduled to do this since November, and it's it's April 1.
And November, December, January, February, March yeah.
Piotr Witkowski, MD, PhDNo.
Don't be
Scott Bennerdon't be sorry.
Piotr Witkowski, MD, PhDSomething.
Right?
Scott BennerYeah.
Know.
But I'm just saying there's a varied nature and a and a hurried nature to what you're doing, and it's a lot of effort.
I genuinely appreciate it.
I'm sure everybody listening does too.
Advocacy: How You Can Help
Scott BennerCan I ask you, is there something who people are politically minded?
Is there something that they could do or you need them to do to help with these cells and their availability, or is that being taken care of by the lobbying that breakthrough is doing?
Piotr Witkowski, MD, PhDThe breakthrough is doing.
Right?
But, but it's not done deal yet.
Right?
So so so definitely, we've we've been voicing our concerns to FDA first now to HHS directly.
In the meantime, since we didn't get attention, we couldn't get attention, we reach out to senators, and senator Mike Lee responded.
But now the the shortest path is through HHS.
And there is some attention, but it's just the beginning.
So Right.
I think, you know, if people can express support for what we're asking for for regulatory adjustments so it can be done safe and effective and available to to patients, this will definitely help.
Scott BennerI see.
That's excellent.
Piotr Witkowski, MD, PhDBecause HHS are are watching watching social media, watching what's going on.
Today, we don't live in vacuum.
I mean, for me, I knew social media is powerful, but I never thought that this will be the the the breakthrough through social media.
Scott BennerYou didn't think you'd be a guy being on podcast.
Piotr Witkowski, MD, PhDWe wrote papers for five years.
Yeah.
And we were writing about this for five years, and it's like any other news.
I mean, nobody's seen it.
Scott BennerNobody
Piotr Witkowski, MD, PhDpaid attention.
But now there is attention, and it's a good moment to to have it fixed.
Scott BennerThat's excellent.
Well, I wanna say that I have been for well over a decade when people would ask me why are you supportive of JDRF and now breakthrough t one d?
I would always say, am very excited about having an entity with lobbyists Yeah.
In government to know how to get to people.
Like, I think that's incredibly important.
I'm glad to see I was right because Yes.
This is fantastic news.
Piotr Witkowski, MD, PhDNo.
Definitely.
Definitely.
There is a gap, and they're filling the gap, and they it's critical.
It's critical to have stuff done in the right way.
And and Breakthrough t one d, it's it's a great advocate for this, and and we hope that this this issue will be also resolved.
Scott BennerCan I ask you a question that I'm sure some people listening are asking?
Why didn't you just leave America and do it somewhere else?
Piotr Witkowski, MD, PhDSo first of all, the America I mean, we in America have amazing infrastructure.
Mhmm.
So my advantage over European countries is that I, doing this, I have all deceased donors in the country available with, you know, over, what, two nearly 300,000,000 people.
I have so many organs available.
And living in Chicago, we have infra that you have flights.
We can bring the we have to bring the pancreas within twelve hours.
And living in Chicago, I can bring the almost from everywhere
Scott BennerOkay.
Piotr Witkowski, MD, PhDWithin twelve hours here.
So I have huge number of donors, which they don't have in the small small countries.
So I can do much more.
And, you know, infrastructure is is here.
Yeah.
I'm from Poland, so I help my university to develop the program, IELTS program in Poland, but they have own limitations, so it didn't really take off.
Scott BennerOkay.
Piotr Witkowski, MD, PhDBut they had the chance to do it.
So each country has only limitation.
More some of them are more or less successful.
But I believe I mean, this is the best place to do it.
Scott BennerOkay.
Piotr Witkowski, MD, PhDOnce we have the right frame, we can do it.
And we were leaders in the field when we were doing the trials sponsored by by NIH and and JDRF.
We were leaders.
We were doing there were, like, eight centers in The States doing this 300 transplants.
We've been optimized I mean, we've been doing stuff, and we were teaching others.
It's just that once the trials were finished, there was no system for support.
Scott BennerOkay.
Piotr Witkowski, MD, PhDThere were no reimbursement and no more funding for research, and all the centers just closed.
People who had experience in this disappear, and and then we lost a lot.
We lost not only time, but experience.
So now we have to rebuild it.
Scott BennerWe'll build that again.
Piotr Witkowski, MD, PhDWe will be leaders again.
We just need this as chance.
Scott BennerI believe that.
You just said something that has a question in my head.
I don't know how much it fits here, but you said the pancreas is often come in late at night.
Is that because they're donors and people have accidents later in the evening?
Piotr Witkowski, MD, PhDRight.
Because the the organ donation happens in the regular hospitals
Scott BennerOkay.
Piotr Witkowski, MD, PhDUsually after hours.
Right?
So first, they are got the the elective cases goes, and then the procurement happens in the afternoon or or at night.
Scott BennerI see.
Piotr Witkowski, MD, PhDAnd then it arrives to us at night.
Scott BennerOkay.
So if health and human services makes this adjustment to how this thing is designated, you can move forward as quickly as there's nothing standing in your way anymore.
So this
Piotr Witkowski, MD, PhDI mean, we would need to talk to the insurance and, you know, show them the data and convince them to pay.
Mhmm.
The argument from, from medical chief medical officer of one of the insurance, when he saw the data, he's like, this is no brainer for me.
Patients are not in the ICU.
Stay in the hospital for three days.
Go home.
They back at work after one week without diabetes.
Yeah.
This is a no brainer.
Scott BennerCan you speak to the to the people out there who would say, well, they don't want us cured because they're selling us insulin and pumps and all this other stuff.
Can you explain to them why that's not the case or is the case in your opinion?
The tinfoil hat, can you can you tell them how to take it off?
Piotr Witkowski, MD, PhDOh, no.
No.
How I'm gonna say it.
I mean I mean, we all know there is a pharmaceutical business.
Right?
There is pharmaceutical business.
How it interacts with political decisions?
Yeah.
I want to believe that everybody wants the best for the patients.
Okay.
Scott BennerThere's part of me that that I should be wondering a little bit if this stalling for the last twenty five years isn't somebody else's lobbyist being better than our lobbyist.
Is that about right?
Maybe.
You're not that you maybe you don't wanna say.
I'm not sure.
Scott BennerYeah.
Piotr Witkowski, MD, PhDI mean
Scott BennerWe got somebody on our side.
That's what I should think.
Piotr Witkowski, MD, PhDFor some reason, we are here twenty five later.
Twenty five years later.
Scott BennerI see.
Yeah.
Okay.
Well, so then the people listening to this, I mean, the call to action here is to contact health and human services and tell them tell actually, say it again.
Tell me exactly what you would need from them to make this valuable for you.
Piotr Witkowski, MD, PhDSo I think my understanding is that that HHS should hear from everybody that this is the right thing to do, not only us physicians and experts in the field, from patients, from endocrinologists, from everyone Mhmm.
And that that this is what is expected, and we all believe that is the right thing to do.
And and their job is to analyze it and frame it in the proper way that we all will benefit from this.
Scott BennerYeah.
The benefit there is to the insurance companies because if they can get somebody off of all those devices and those and then then they don't have to pay anymore.
Yeah.
You just have to create a Yes.
A benefit somewhere else.
Piotr Witkowski, MD, PhDAnd then my my message is is that we're not gonna remove need for devices.
The insulin pumps, closed loops, getting getting better, and they're helping majority of the patients.
And we will treat still treat the minority Mhmm.
Of the patients.
So we're not replacing islets transplantation.
We're not replacing the CGMs and pumps yet.
No.
Not not at all.
We'd offer this today for all those poor deaf desperate patients who suffer despite using, and they don't have, you know, life normal life despite using the pumps.
Scott BennerHelp the people who are suffering the most.
And hopefully, we we learn something along the way that allows us to help more people easier.
Piotr Witkowski, MD, PhDYeah.
Yeah.
Definitely.
Scott BennerOkay.
Because the procedure you have right now, even if everybody was out of the way, you're not able to stand up and say, okay.
There's two million of you out there with type one diabetes.
Everybody get in line.
We're all done.
You know what mean?
Piotr Witkowski, MD, PhDRight.
Right.
Absolutely not.
Right?
This is what we hope for, but no.
No.
No.
Scott BennerWe're not there.
Piotr Witkowski, MD, PhDI'm telling you, if we do a transplant, a thousand transplants a year
Scott BennerThat would be amazing.
Piotr Witkowski, MD, PhDI would be happy.
Right?
Of course, it may change.
Right?
Yeah.
Of course, it may change if suddenly we start doing a thousand and we optimize.
We develop new technique of isolation.
We figure out many different things.
It may it may scale up.
Right?
But we don't have it today.
I can't promise anyone that we will do, you know, unlimited amount.
Definitely not.
Scott BennerSomething almost unforeseen at this moment needs to change before you can scale like that.
Mhmm.
Okay.
Piotr Witkowski, MD, PhDOh, yeah.
Scott BennerYeah.
Yeah.
Piotr Witkowski, MD, PhDYeah.
So changing the regulation is the first step.
First step.
And and then it will be right environment and framework for people to do stuff.
Right?
And then we'll see.
Because if the stem cells therapy comes soon, right, we're not gonna have time to scale up disease donors.
The let's say, Vertex cells will will replace them.
They will be better, available, more consistent, and and available right away.
Scott BennerWell, that's very it's valuable.
And it it's important to me to to be very just transparent and honest with people because like I said, I Oh,
Piotr Witkowski, MD, PhDyeah.
Yeah.
Yeah.
No.
The I
Scott Bennerthink it's fantastic that people are sharing their stories.
I really enjoy seeing it.
But for everyone like me who sees it and says, that's amazing.
I think that's a great step, but we're not that that doesn't mean that three weeks from now, it's over.
Piotr Witkowski, MD, PhDNo.
No.
No.
For
Scott Bennerevery person Absolutely.
There's a lot more people out there who see that and just think, oh, gosh.
Piotr Witkowski, MD, PhDAs and if you look even this, you know, we're using tegoprobot in ten, twelve patients, but this is gonna take years again before tegoprobot is approved for everyone.
Scott BennerRight.
So And that's on the other thing.
Piotr Witkowski, MD, PhDHappens overnight.
It's just the beginning, and and and it's a good beginning.
Sure.
Scott BennerSure enough.
Piotr Witkowski, MD, PhDAnd the progress with with people I mean, with disappointment comes that they heard that in five years, we're gonna do this on that, or we're gonna get somewhere.
The progress, it's never linear.
Right?
It's not one line going up.
It's just like a step.
Yeah.
You're trying, trying, trying, and then you take a a step up.
Right?
And but you don't know when is your next step.
Scott BennerRight.
Piotr Witkowski, MD, PhDThere is a hope that we that the steps will be, you know, on a regular basis to get to the heaven Yeah.
In five years, but this is not how it works.
Scott BennerIt's not how it works.
Well
Piotr Witkowski, MD, PhDAnd I can't believe it because, you know, I've been I've been I've been here in this country and involved in Ireland for last twenty six years, and it's like yesterday.
Right?
So you you you're saying in five years, but how many five years I already haven't seen the progress.
Scott BennerSure.
Well, they've been telling people they've been telling people five years for fifty years.
Yeah.
Yeah.
I always imagine it's because the person working on at that time actually really is hopeful and thinks they see a an end to it.
I also think they probably want their research funded, so you say positive things while you're doing that.
Piotr Witkowski, MD, PhDOh, yeah.
No.
This is another thing that that people and companies, they they need the funding, and they sometimes exaggerate.
Right?
Scott BennerRight.
Piotr Witkowski, MD, PhDAnd people reading this, they really think and the one one thing just came to my mind, which is also related, is that when in in 2000 in the year 2000, when Edmonton group, they described seven patients of insulin for one year after eyeless transplant.
All of them of insulin.
Right?
Mhmm.
Is the moment when expectations were like, oh, come on.
This is what you say.
Oh, we have it.
Scott BennerYep.
Piotr Witkowski, MD, PhDOh, now now we're gonna roll.
Right?
In five years, everybody.
But then the immunosuppression was not sufficient, and they were gradually losing the insulin independence.
And and that's this is when the disappointment came.
Few years later, they were not more anymore.
Only only 7% were on the of insulin.
Right?
So people were saying, oh, no.
No.
You see?
I listen no.
I listen to
Scott Bennerwork and stuff.
Yeah.
Piotr Witkowski, MD, PhDBut this was all about the expectation.
The expectation were huge when it happened, and then it didn't meet the expectation, and then there was a huge disappointment.
Scott BennerAnd sometimes time just has to pass and different minds have to get set on problems and
Piotr Witkowski, MD, PhDRight.
But setting the expectations is important.
Right?
So when we talk to the patients, I'm I'm promising that we will work hard to get them there.
I can't guarantee that we will get them with every patient because every patient is different and and and and and some unexpected thing happen.
But I'm promising that we will work hard to and do everything we can to keep them safe and and get them off insulin.
But, but sometimes it's too much for some patients.
Right?
The the amount of adjustment and and oversight and going to the labs and this and that and experiencing complications, sometimes it's too much.
And they're saying, no.
No.
No.
This is too much for me.
Yeah.
So we are warning that this is a commitment on both sides, and it would require and you see, even the first patient from Tecoprubar, I don't know if if you've seen my presentation.
So the first patient was off insulin, and then she decided this is too much for her, come to Chicago every three weeks.
Mhmm.
And then she decide to switch to tacrolimus knowing that it's more toxic.
But regardless, traveling to Chicago was too much for her, which she didn't know before.
Yeah.
And you would think, come on.
I mean, you are off insulin.
You really want to risk being diabetic anymore?
But for her, it was too much.
It was too
Scott BennerAnd why could you not do the infusion where she was?
Piotr Witkowski, MD, PhDBecause this is experimental medication.
It has to be given here for the safety.
Scott BennerOkay.
Piotr Witkowski, MD, PhDIn the future, once it's approved, as we discussed, it can be infused at home.
It can be given sub q.
Definitely in the future, but not yet.
Scott BennerNot yet.
So almost like when I go get a an iron infusion, I go to an infusion center.
There are people there getting all different kinds of medications at that time.
Piotr Witkowski, MD, PhDYeah.
And then I don't know about the iron, but we have another medication, belatacept, which we're using in a which is approved medication, and then patients are getting them either in infusion center, as you said, or at home.
And then just come come to patient home, put IV, one hour infusion done.
Scott BennerI see.
Piotr Witkowski, MD, PhDSo we have similar medication, belatacept, which we which we use as well outside this trial for for our different trial, and it's it's working as well.
But the tacrolimus is given just in the lower dose.
So this medication cannot replace tacrolimus.
Can I mean, allows to lower the dose and minimize the side effects?
So, like, halfway what the the goprobar is allowing for.
Scott BennerAre you looking for trial participants right now, or do you have your next group?
Piotr Witkowski, MD, PhDNo.
No.
So so we look we're still looking for patients with kidney dysfunction.
Scott BennerHow can they get ahold of you?
Piotr Witkowski, MD, PhDSo on our website, there is a there is a link to the Eladon, the GoPruvat study, and they can follow the prompts to enroll into the study.
There is a questionnaire.
Mhmm.
They can fill up the questionnaire, and there is instruction where to send the questionnaire.
My nurses are reviewing every questionnaire, and they segregating the patients, those with normal kidney function and kidney dysfunction.
And we will be inviting patient with kidney dysfunction one after another until all the spots are filled, but we still have open spots.
Scott BennerAnd don't lie.
They can tell.
They're gonna check.
So Right.
No.
Piotr Witkowski, MD, PhDI mean I mean, again, it's it doesn't help because if they if they lie, they come here and the result is here.
So we cannot qualify patients with the results outside the range.
Scott BennerWhat's that web address?
Is it is it actually pwackowski.org?
Piotr Witkowski, MD, PhDYeah.
Yeah.
Yeah.
This is the website.
Scott BennerOkay.
I'll put it I'll put a link in here for you, see if we can get you those people.
Mhmm.
Yeah.
That that would be awesome.
Is there anything that I should have asked you about that I didn't?
Anything that you'd like to say that I just didn't get to?
Piotr Witkowski, MD, PhDIt was really comprehensive.
It was really good, and I appreciate everything you're doing promoting, you know, everything for for patients with type one diabetes.
Scott BennerThank you.
Piotr Witkowski, MD, PhDAnd and giving us a chance to to tell patients about about us.
I think, again, I'm not our patients, they posting what they feelings.
Mhmm.
It's not moderated by me.
I'm not involved what they're saying.
I'm not clarifying.
I'm not because I I don't think it's yeah.
So there might be, you know, some misunderstandings and stuff.
And at the end of the day, you know, we, you know, we are providing comprehensive information.
But the the bottom line is it is still anti rejection medication.
It's just less toxic than everything else we used before.
Mhmm.
And the patient tolerated tolerating this much better than everybody before, and the outcomes are better than every everything before.
But it's all preliminary all preliminary, and it's not final.
So we're still evaluating this.
Scott BennerBut a lot of reasons to be excited.
Piotr Witkowski, MD, PhDOh, yeah.
Oh, definitely.
No.
No.
We are so we are so excited.
Right.
And especially, I want to highlight that we as a scientist, we're testing new things.
And then often, it doesn't work.
Right?
So there is a lot of stress and and and disappointment on patient's side and our side.
Mhmm.
But this time, we are just lucky that the staff which we the approach which we testing is working better than anything else.
So this is this is extremely rewarding, stimulating.
And I don't know if you if you've seen the documentary, the the human trial.
Scott BennerI know of it.
I have not seen it.
No.
Piotr Witkowski, MD, PhDYeah.
I I I highly recommend it to to everyone to watch it.
It's a documentary about the patients who who participate in the ViaCyte stem cells islets transplantation trial when the stem cells islets were implanted in the plastic pouch and abdominal wall.
Mhmm.
But but the documentary is made by the director who is also type one diabetic, following the camera not only medical team, but patients at home.
And it allows us to better understand all these emotions and and everything related to to be a participant in the study.
Sure.
And it didn't work.
It didn't work.
So the the documentary shows, you know, the the pain, right, and disappointment.
Although they all highlighting the patients and physicians.
Yes.
Physicians told us it may not work.
We knew it may not work, but they still, you know, sacrifice years of laughs, of dry of emotions, and and and then and they it shows disappointment.
It shows disappointment that it may not be successful.
Scott BennerPeople's kindness supports this a lot.
I had a a woman on one time.
She I think was it Veritex, the one pouch or Viacyte?
Maybe.
I'm not sure I remember.
She was in a trial.
They couldn't even tell her she was for sure getting actual stem cells.
They just they needed to do it was a blind it was double blinded.
Piotr Witkowski, MD, PhDIt was blinded.
So She
Scott Bennerstill did it to help, which I thought was amazing.
Piotr Witkowski, MD, PhDIn this trial, they were not telling them if there is NSC peptide, if the islets are working.
They were not telling them.
Yeah.
So they were guessing.
Right?
And seeing those emotions, like, I feel like islets are working.
Oh, I feel better.
I feel but the uncertainty is still is still not allowing them to celebrate.
Scott BennerRight?
Sure.
Piotr Witkowski, MD, PhDAnd at the end, they learned that there's nothing.
Nothing works.
This was this was the hard part.
Right?
So I'm glad that we can tell patients, where they are, what's going on, and what they're getting, and and we can share it with others and and and go together along the way.
So
Scott BennerYeah.
So this is You threw something against the wall and it stuck.
Yeah.
That's awesome, Mike.
Piotr Witkowski, MD, PhDI can give you I can give you another example.
Scott BennerPlease.
So we've been testing, the Eilish transplantation into the the Cervova pouch, which is a a new experimental, and we were not sure if it's if it's gonna work.
Mhmm.
And patients require surgery, implantation, explantation, several surgeries.
So we were aware that this requires a lot of sacrifice.
So I was able to convince the the funding agency and the sponsors to add additional transplant into the liver if regardless, if the islets and the pouch doesn't work so they can get the benefit of participation in the study, but being off insulin with the islets and the liver.
And and then, and this is what happened.
The the results in the pouch were, you know, suboptimal, and they all received the islets and the liver, and most of them are off insulin enjoy enjoying the living without the without this.
Right.
Piotr Witkowski, MD, PhDAfter the sacrifice.
So this is what we learned from this documentary.
Right?
That we should provide patients more benefit rather than just telling them, I'm sorry.
It didn't work.
Scott BennerYeah.
No.
The living with diabetes is already a lot of mental and physical stress.
You don't need extra, you know, especially when in this situation.
Well, I I wanted to thank you too.
It was nice of you to say that the conversation was comprehensive, but I wanna mention that listeners of the podcast sent in a lot of questions for you, and I synthesized those questions down into the the road map that we followed today when we were talking.
And you were lovely to come on.
You weren't you did not have these questions ahead of time.
You're just sitting there listening and answering, and I thought you did such a wonderful job of outlining what all this is and and what it isn't.
I definitely feel very good about about the direction and and moreover that you're in charge of it because your passion and time, it looks like it's really starting to pay off.
And I I can't thank you enough.
You don't know this about me.
I don't have diabetes.
My daughter will be 22 this summer, and she was diagnosed when she was two, and she has type one.
Piotr Witkowski, MD, PhDOh, I'm really sorry.
Scott BennerThank you.
I appreciate it.
She's doing well, but I but I really do appreciate it.
Piotr Witkowski, MD, PhDBut no.
But, yeah, we all know how much, you know, how much work and how how challenging how much harder is life, basically.
Scott BennerIt really does reshape your life in a way that you would like for it not to have.
That that's for certain.
Piotr Witkowski, MD, PhDBut one more thing if I can share with you.
Please.
So all the patients when we telling them, now you're diabetes free, you're insulin free, go and enjoy your life.
Right?
Mhmm.
So they're happy.
Right?
But the next day they come, they're not happy.
I'm like, what's going on?
Oh, I have problem with my car.
I'm like, so so this happiness, which I thought gonna stay forever.
Right?
No.
These are regular people who has regular pro problems, and they have just new problems.
Right?
And and they're manageable problems.
Of course, they have perspective.
Of course, they do remember how life was miserable before.
Actually, many of them are forgetting.
And I and it's funny when I'm when I'm observing some of the patients when they when they're giving interviews, when they're being asked how was the life, they it's became, like, so distant.
They're not getting into details anymore.
Scott BennerDoctors like, listen.
Maybe I'm working too hard here.
I don't know.
Piotr Witkowski, MD, PhDI mean, one message is that that, you know, we you know, everybody has own problems.
Eventually, if it's not diabetes, there are other problems.
And then people what I also learned that people with diabetes Mhmm.
They more resilient after after that.
I mean, after being off insulin, they're also you know, the the regular life challenges are not not as stressful for many of them.
I But for for some of them, they they are.
Scott BennerComes right back.
I have to tell you doctor, I feel like I have the perspective of a 200 year old man.
Like, you know, seriously, like, my daughter being two years old and being diagnosed was was really through
Piotr Witkowski, MD, PhDa lot.
Scott BennerYeah.
It's something else.
And for her too, I she she sometimes seems to have the wisdom of somebody three times her age.
Piotr Witkowski, MD, PhDYeah.
And then I I can't even imagine how hard it is, you know, having a a child with diabetes.
It's challenging for others, but for children and
Scott BennerRight.
Piotr Witkowski, MD, PhDYou know, childhood, teenager, I mean, it must be.
Scott BennerWell So I'll say this.
This podcast exists because I taught myself how to manage insulin, and it turned out that it worked really well for her.
And then I realized that I had a way of communicating that information that allowed other people to just hear it and then kind of replicate it for themselves.
And this podcast over the last twelve years has close to 22,000,000 downloads.
Piotr Witkowski, MD, PhDWow.
Congratulations.
Scott BennerYeah.
Thank you.
And I'll tell you right now, the the feeling you get when you hear somebody say, you know, my a one c's in the fives or I haven't been in
Piotr Witkowski, MD, PhDlove you.
Scott BennerOh, it's it's just wonderful.
Right?
But at the same time, they do disappear.
They stop listening, you know, because they go they go back to their lives.
And and in the end, you know, what I wanted to share with you about it was I've come to think of that as, like, graduation, and I'm happy when when they're gone.
You know what I mean?
So Yeah.
Yeah.
Yeah.
Yeah.
If I was you, I'd be thrilled that they're worried about their car and they're upset about it.
Piotr Witkowski, MD, PhDOf course.
Of course.
Of Of course.
Yeah.
It was just surprise to me.
But I'm saying it was surprise which I I learned that yeah.
No.
This is and this is all of us.
I mean, when you're sick, your sickness is the most important.
Once you are healthy, you you can just Yeah.
Have other problems.
Right?
Outro & Resources
Scott BennerYeah.
Well, it's nice that they don't have to worry about it anymore.
Who you know, you you can't control what happens next.
Yeah.
I will say this.
This was fantastic.
If the people from Eladon are listening, and I'm sure you are, I would love to interview you too.
And if you ever wanna come back or you have new news, you are you're welcome back here anytime.
You please just let me know.
Piotr Witkowski, MD, PhDThank you very much.
I really appreciate it.
Scott BennerAbsolutely.
I
Piotr Witkowski, MD, PhDappreciate be opportunity to meet again with something exciting to share.
Scott BennerYeah.
Will you be at ADA?
Piotr Witkowski, MD, PhDYes.
I think I was invited to give it to update on on the study.
Yes.
Scott BennerI'm gonna find you and say hello.
I'll be there.
Piotr Witkowski, MD, PhDYeah.
Let's let's let's meet.
Scott BennerThat would be lovely.
Lovely.
Absolutely.
Okay.
Go ahead.
I'm sure you have a thousand things you haven't been doing while you were talking to me.
Piotr Witkowski, MD, PhDThank you.
Scott BennerThank you
Piotr Witkowski, MD, PhDvery much.
Scott BennerTake care.
Having an easy to use and accurate blood glucose meter is just one click away.
Contournext.com/juicebox.
That's right.
Today's episode is sponsored by the Contour NextGen blood glucose meter.
I'd like to remind you again about the MiniMed seven eighty g automated insulin delivery system, which of course anticipates, adjusts, and corrects every five minutes twenty four seven.
It works around the clock so you can focus on what matters.
The Juice Box community knows the importance of using technology to simplify managing diabetes.
To learn more about how you can spend less time and effort managing your diabetes, visit my link, medtronicdiabetes.com/juicebox.
Okay.
Well, here we are at the end of the episode.
You're still with me?
Thank you.
I really do appreciate that.
What else could you do for me?
Why don't you tell a friend about the show or leave a five star review?
Maybe you could make sure you're following or subscribe in your podcast app, go to YouTube and follow me or Instagram, TikTok.
Oh, gosh.
Here's one.
Make sure you're following the podcast in the private Facebook group as well as the public Facebook page.
You don't wanna miss please, do you not know about the private group?
You have to join the private group.
As of this recording, it has 74,000 members.
They're active talking about diabetes.
Whatever you need to know, there's a conversation happening in there right now.
And I'm there all the time.
Tag me.
I'll say hi.
When I created the defining diabetes series, I pictured a dictionary in my mind to help you understand key terms that shape type one diabetes management.
Along with Jenny Smith, who, of course, is an experienced diabetes educator, we break down concepts like basal, time and range, insulin on board, and much more.
This series must have 70 short episodes in it.
We have to take the jargon out of the jargon so that you can focus on what really matters, living confidently and staying healthy.
You can't do these things if you don't know what they mean.
Go get your diabetes defined.
Juiceboxpodcast.com.
Go up in the menu and click on series.
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 at wrongwayrecording.com.