#1680 After Dark: Islet Cells and Second Chances

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Robin’s unbelievable story—misdiagnosis, abuse, survival, and finally freedom from type 1 diabetes through a life-changing islet cell transplant. A raw, redemptive journey of strength, healing, and hope against all odds.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Here we are back together again, friends for another episode of The Juicebox Podcast.

Robin 0:15
I'm Robin. I was diabetic, type one diabetic for 18 years.

Scott Benner 0:20
If this is your first time listening to the Juicebox podcast and you'd like to hear more, download Apple podcasts or Spotify, really, any audio app at all, look for the Juicebox podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management, go to Juicebox podcast.com up in the menu and look for bold beginnings, the diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. The episode you're about to listen to was sponsored by touched by type one. Go check them out right now on Facebook, Instagram, and of course, at touched by type one.org check out that Programs tab when you get to the website to see all the great things that they're doing for people living with type one diabetes, touched by type one.org, nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. I'm having an on body vibe alert. This episode of The Juicebox podcast is sponsored by ever since 365 the only one year wear CGM. That's one insertion and one CGM a year, one CGM one year, not every 10 or 14 days ever since cgm.com/juicebox the episode you're about to listen to is sponsored by tandem Moby, the impressively small insulin pump. Tandem Moby features tandems 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 tandem diabetes.com/juicebox.

Robin 2:14
I'm Robin. I was diabetic, type one diabetic for 18 years.

Scott Benner 2:20
Robin, I can't wait to hear your story. So I looked at your notes this morning before we started, and I've tried to decide if I wanted to say this up front or not. It's the first time in a while that I've looked at something and thought, I wonder if this is a lie. Like, really. Like, so I'm like, I can't wait to, like, pull through it. Like, why don't you tell me about what you remember about being diagnosed? How old are you now? How old were you when you were diagnosed?

Robin 2:47
I am 40 now. I was diagnosed at 22 okay, and it is a wild story, and I was really shocked at actually, how common this happens to type one diabetics. But I was newly pregnant is first pregnancy, you know, never. Didn't have any idea what was going to happen, called an OB, because that's what my mom told me to do, was, oh, call the OB, get in with them. I get in and I'm probably maybe nine weeks pregnant, and go into a regular OB, do all your normal testing. There was sugar in my urine at that first OB appointment that they never told me about, but there was just sugar in the urine. You do the urine sample, you do the blood test and stuff that they do for your normal OB workout. Well, a couple weeks later, they call me at home and they said, Yeah, we need you to do a retest on a few things. And I said, Oh, okay, what's going on? They're like, well, I don't really want to tell you on the phone. And I'm like, now I feel like you should tell me, like, if you're calling me or telling me to retest, I'm gonna want to know what is happening. Yeah, so they tell me my HIV test came back slightly positive. And I don't think I've ever had to scrape my job harder off a floor. You were 2222

Scott Benner 3:58
pregnant. Yeah. Married, not married.

Robin 4:02
I wasn't married. Okay, been with my partner for quite some time at that time, but yeah, 22 and I was just like, um, what? And so I asked them, What do you mean? It's slightly positive? They said, well, they explained to me that it came back as positive on the initial screening. I forget what that a rapid screen, I think. And they said, Well, we have to send anything that's positive off for a confirmatory test. And I'm like, Well, what is that? And they said, it's a Western Blot. And I said, Okay, great. And they tell me that these bands came back positive. And I remember, I don't remember all the bands, but I just remember P 24 was one of them, and P 24 is the most. It's the first one that goes positive, I believe, on an HIV screen. So she tells me, I have to retest in two weeks. I said, Okay, great, and I come back. And in that meantime, let me tell you I was freaking out so freaking out about this,

Scott Benner 4:53
yeah, let me ask you real quick, Rob, you were like you, but you said you'd been with your partner for a long time. But did you think maybe I could have HIV? V or were you just like, was it just to freak out? Because, I mean, of the context of what was happening?

Robin 5:06
Well, there's a little bit of backstory with that. My biological dad was HIV positive, and he died when I was 19.

Scott Benner 5:15
Oh, so you had a ton of context for this. I see, all

Robin 5:18
right, well, I wasn't around him. That's the thing is, I didn't grow up with my biological dad. He was in and out of prison. He did drugs. It just wasn't a good situation. And my mom had left him like I was probably in third grade when she left him, so no contact.

Scott Benner 5:32
Was there anything going on in your life that made it seem reasonable to you that you could have HIV? Are you a drug user? You have a lot of sex any of the ways, not at all,

Robin 5:43
no, but at the same time, you know, I dated around and stuff, like when I was in high school. So I was like, I don't know. Maybe something crazy happened, okay, you know, I don't know. So I had everyone I ever even kissed get tested, literally, and everyone came back negative. And I was like, I don't understand. So in the meantime, we went and did another test, and it came back exactly the same way, only this time they called me and told me that there was two more bands on it that weren't even HIV related, but they didn't know what they were okay. And I was like, Okay, so I'm still panicking about this, because I'm like, I don't know. Then they said, Well, we think you're going through sero conversion, which is that you just contracted HIV, and it hasn't fully, I guess, developed, I don't really know. I did a lot of research. Then I was doing a lot of googling. Google was pretty new. Then actually, a lot of googling on this, trying to find out a lot of stuff. Ended up they called the CDC because I lived in a rural community. I guess I should have started with that up front. We didn't have a lot of obese and it was, I mean, my next two kids were delivered by a general practitioner that, yeah, very, very rural community, you had to drive 30 minutes to even get to an

Scott Benner 6:56
OB that, I thought you say to a road that would have been funny, no.

Robin 6:59
But you know what? If you want to go to something that wasn't Walmart, you had to drive 30 minutes, yeah, for everything. And it wasn't even, like a, you know, now you can go to the big Walmarts that have, like, the groceries and stuff. We didn't have one of those.

Scott Benner 7:12
No, you had, like, extension cords and light bulbs Walmart.

Robin 7:15
Yeah, exactly like that. It was super, super farm community, super role. We had some gas stations and McDonald's and Wendy's and the Walmart

Scott Benner 7:26
and faulty HIV testing. It sounds like too. Yeah. So how long does it take for you to figure out that you don't have HIV?

Robin 7:34
It took three months. That started, I think I went to the doctor in probably, like October. I just remember it was cold. It was start. It was fall. It was starting to get fall. It was Christmas Eve. They called me and told me I didn't have HIV and I didn't have hepatitis C, because the CDC told them they needed to do the specialized tests they do for nurses when a nurse gets pricked on accident. Okay, gosh, I can't remember what that was called now, but it was like a special test that looked for your viral load, I see, and it came back. It was all negative. They're like, you definitely don't have that. But it didn't matter, because I was so scarred by this, I never got another HIV test until my fifth kid was born, and they wouldn't give me my child until I took it.

Scott Benner 8:18
Is that a thing they tried to do every time you were pregnant. HIV test

Robin 8:22
is standard for all pregnancies. It's a law now that you have to take an HIV test during your pregnancy, workup. But because my other children, two of them were delivered by that general practitioner, so it wasn't like a big deal, my general practitioner is like, Nah, I know that it's an issue. We're not going to do it. I'm like, Cool. And then the fourth kid was delivered by an OB, because I had moved into, like, a larger town, and they didn't do general practitioners just didn't deliver. So the fourth kid was delivered by an OB, and they really just didn't they didn't think it was a big deal. But by the time I had a fifth kid, when I got to the hospital. It was a larger community, and they were like, You are definitely not nursing that baby without an HIV screen. Wow. So they took my baby and said that they were going to test my baby or they were going to test me, and I opted for the baby to get tested, and she obviously tested negative. And my OB even came in there and tried to talk me off a ledge, because at the time, my oldest kid was like, 13, and she's like, Look, if you've had untreated HIV for 13 years, you would be dead.

Scott Benner 9:29
So you kind of flipped out, because, not because you thought you had HIV, but But you didn't want this whole thing to start over again if the test should come back oddly.

Robin 9:37
Yeah, it gave me so much anxiety, and even at that time, they wouldn't diagnose me type one. So this was just like they didn't know what was going on. And that three months where they finally called me and told me that I didn't have HIV or hepatitis, that's when they broke the news to me on the phone and said, we have something else we have talked to you about. You've had sugars, like plus six plus five. In your urine every time you've been in here. And I'm like, what? Like, why would no one

Scott Benner 10:05
brought that up? Yeah, it's great. Okay, so you get through that three months of HIV confusion, and then now you think you have diabetes.

Robin 10:14
They didn't even tell me I have diabetes. They said that it was probably gestational or something. They were like, well, we don't really know what it is, but we can't really they told me. They could not tell me that I had diabetes because I was pregnant again. Rule setting

Scott Benner 10:30
for clarity, they found two issues with you. One, they were wrong about and the other one, they didn't bother bringing up exactly Awesome. How does that first pregnancy go?

Robin 10:39
I went back and did more labs after they wanted to investigate the sugar problem, now that they knew I didn't have HIV, but that was the only OB that I saw, too. That was the other thing. So that practice had six OBS, and with the whole HIV thing going on, they were like, Oh no, you only see this one doctor, and then you got sugar in your urine. You definitely only see this doctor. So I only had to see one doctor my whole pregnancy, which was rare kind of in that practice I see. So they had me come back in and they did all this, these labs, and they said, Oh, we're gonna go ahead and give you Glyburide. Glybride is, you know, type two medication for diabetes, because my sugar was super high. I don't even know what my a 1c were, because I don't know if they were testing that, to be honest, but they gave me the glybride, and I would just pass out. Sometimes I was passing out because it would just get high out of nowhere and just pass out. It was a crazy situation.

Scott Benner 11:30
Your blood sugar would get so high that you lost consciousness.

Robin 11:33
Yeah, sometimes, and then it would drop down really low, because you take the glybride and it's excreting or whatever it could, you know, out of your pancreas, and I would end up passing out from that too. So I had like, a finger monitor that you would prick your finger. I know at some points I would get up to, like, four or 500 and then I could drop down in the 20s after taking the Glyburide. But it wouldn't stay down like the glybride was. Just like eating Skittles. It might take you down. Maybe an hour later, you might go down, and I wasn't even eating poorly. So after about two weeks of taking Glyburide, they were like, We need to admit you, because there's something seriously wrong with your sugar. So I got myself a little one week stay and the ICU at our local

Scott Benner 12:16
hospital, okay, did they figure it out there? They

Robin 12:20
wouldn't label me as a type one, but that doctor came in and said, I'm gonna tell you right now, you most likely have type one diabetes. You are literally 120 pounds soaking wet, and we can't stabilize your sugars. They told me they were gonna put me on insulin, but I didn't know anything about type one at the time, so I was like, Nah, I can eat some salads. We'll be good. And they were like, No, you're gonna stay so they left me there in the hospital for like a week.

Scott Benner 12:45
How pregnant are you at that point?

Robin 12:46
Probably five, four or five months pregnant. Okay, when they finally figured it out,

Scott Benner 12:52
okay, yeah, eventually you just get put on insulin.

Robin 12:55
Yeah, they just put me straight on insulin. I was on Lantus and cumo Log during the pregnancy. And then it doesn't even stop there. The craziness after I had the baby, she she was fine. Everything was fine. Checked out totally fine. Didn't have any sugar issues. She did come out really big, like she was, I think she was 815 No, she was 812 that one was 812 so she was a big baby with a lot of Michelin Man

Scott Benner 13:22
roles. I like that. You have so many kids. You said that one, how many children do you have?

Robin 13:26
Well, I have five that are biologically mine, but me and my partner combined have seven girls. Oh, my seven girls. Yeah, we don't have any boys. Wow, we don't need any boys. I

Scott Benner 13:37
just like that. You were like that one, you know, there's that one, this one, the other one, yeah,

Robin 13:41
there's a lot of them, but you know what? With seven, you got a broke bestie every day of the week. So if you need to go to Starbucks every day, nobody's gonna tell you, No,

Scott Benner 13:52
my gosh, your house must be crazy. You know, baby comes out, it's bigger, probably because of the blood sugar, you imagine, right? Is that a thing they said to you, okay, and you're on your way living life. 22 still by the time you had 323. By the time you had her. And like, what's with the rest of your story? Like, how long do you stay with that guy? How many kids do you have with him? Let's talk about the tandem Moby 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 tandem diabetes.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 going to help you learn about tandems, tiny pump that's big on control tandem diabetes.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. This episode of The Juicebox podcast is sponsored by the Eversense. 365 get 365 days of comfortable wear without having to change a sensor. When you think of a continuous glucose monitor, you think of a CGM that lasts 10 or 14 days. But the ever since 365 it lives up to its name, lasting 365 days. That's one year without having to change your CGM. With the ever since 365 you can count on comfort and consistency 365 days a year, because the ever since silicone based adhesive is designed for your skin to be gentle and to allow you to take the transmitter on and off, to enjoy your shower, a trip to the pool or an activity where you don't want your CGM on your body, if you're looking for comfort, accuracy and a one year wear you are looking for ever since 365 go to ever since cgm.com/juicebox,

Robin 16:26
to learn more. So actually, right after that, I went back to work, and I was working at a Wendy's. I was like a manager at a Wendy's, and I went back to work at six weeks, and I would stand in this drive through, taking orders, and literally fall asleep. I was eating maybe 500 calories a day, because obviously, you don't want the baby weight, right? So you're like, trying to figure that out. I was freezing to death, like I will go home. It was in the summertime. She was born in May, so I went back to work in June, July. Freeze into death, literally wrapped in blankets all the time. Couldn't figure out what was going on. End up going to the hospital. And they were like, Oh, we don't see anything wrong. I probably went to my doctor, the urgent care, the hospital, probably 30 times, like no joke. And I told I had a physician's assistant was my doctor at the time, and she also treated my mom. And I told her about the diabetes thing, and she said, you probably have type two. She's like, you know you're a little overweight. I'm like, I just had a baby six weeks ago. And she's like, Yeah, and you're overweight, and your mom has type two, and you probably have type two, and it's no big deal. I said, Okay, great. And nobody was checking anything. My left arm went numb. The left side of my face went numb. I started having, like, all these crazy symptoms. I kept going back, like, panicking. I'm like, Hey, I'm going numb, and I don't even know what this is. And they were just like, yeah, you're fine. You're fine. You just had a baby. Just need to sleep, type of thing. I'm literally standing in a drive through falling asleep after sleeping 20 hours a day. They went as far as sent me to a neurologist that stuck needles in my arms and electrocuted my arms like to check the nerve endings, and they're like, yeah, the nerve endings are great. Before I finally went to a different doctor. Like, I got a whole new general practitioner that ran labs and said Your thyroid is really bad. Like, my thyroid level was 100 and something. And, like, even now, I maintain it at one, like, that's where my TSH typically is. So they end up prescribing the thyroid pills. And the same doctor, I told him about the HIV thing and what went on, he was fresh out of med school, and he was like, Yeah, your a 1c. Is pretty high. I think it was eight or something. He saw, I'm sick. You on Metformin? Because he also was like, maybe it is type two, I don't know. So he sticks me on Metformin. I was probably on Metformin, maybe, like, a month before he realized this was not working. And he would get really frustrated. He said, I don't understand, because I can give you the tiniest drop of insulin, this seems to work. And he's like, we're just going to switch you back to insulin. I'm like, okay, great. And in the meantime, because he was so out of med school, like, fresh out of med school, and he was just a curious person. He ran labs without my knowledge, like I didn't know what we were running. And then he called me, and he said, Hey, you are G 8065, positive. You have type one diabetes, but they told you that in the hospital. No, they told me that I was diabetic, but they kept telling me. I mean, they were like, it could be type one, but they wouldn't label me anything. They labeled me gestational

Scott Benner 19:21
okay, but they did give you insulin there. Yeah,

Robin 19:24
they gave me insulin. So it's like they treated without getting, like, a proper diagnosis. I see, okay, got it, yeah. So he ended up running the labs and finding out that I was G 8065, positive. And then he treated my diabetes up until I was probably 30. Okay, I know I was like 30 or 31 before I saw an endocrinologist.

Scott Benner 19:43
How were your outcomes during that time? Do you know what your a 1c was, or what your goals were?

Robin 19:49
Yeah, it would run in like the six and a half to seven. And I did MDI up until probably 29 I was, yeah, I did MDI because I just couldn't fathom being like i. Attaching these things to me. I was young. I didn't think it was attractive to have the pump stuff to you. CGM weren't a thing back then. So I just didn't want, I didn't want the pump. I thought the pump was really scary.

Scott Benner 20:12
Okay, so till you're 29 you you were, MDI, yeah. MDI, all the way up. How many kids did you have by the time you're 29 three, okay, and they're with the first baby's father, yes, yeah, yeah.

Robin 20:26
We were, we got married, and we were together for like, 10 years. We were married quite some time. Yeah,

Scott Benner 20:32
can you tell me the story of the disillusion of that marriage, please?

Robin 20:36
Yeah, he, actually, he was diagnosed bipolar, not initially, but when it started breaking down, and that's really just like, it's a sad, sad story, to be honest, he would when I was pregnant with the third one, he would just not go to work. He would stay at home and sleep all day, and I would come home and the kids are like, in diapers, and my oldest was scaling the cabinets to feed the younger one while I was pregnant with the third and I was like, what is happening? And I tried to get him help, you know, I took him to a doctor. They diagnosed him bipolar. He was very promiscuous with this. He would disappear in the middle of the night and be cheating on me to the point that, like, back then, you couldn't really see things. It took a little work to go see things, but I ended up pulling up on the Verizon count and being able to pull up the phone numbers that he was texting. It was like three in the morning one time, and he wasn't home. And I called the last number he texted, and some girl answered and told me that he was going to a baby shower with her tomorrow. I said, I don't think so, because he's married a

Scott Benner 21:38
baby shower. Well, that's that's not fun cheating, that's for sure.

Robin 21:43
Yeah, it wasn't great. We went through a period there where it was kind of like on and off situation. I tried, I really tried hard, and I just couldn't handle it. The final straw with that was that I had started a HR position because I work in human resources, and I just graduated, too with my degree, and was starting a brand new position, and we went to corporate for training, and corporate was in another state, and I got back, and I remember that we were having the birthday party for our youngest at the time her she was two, and he had set up the party and done all the stuff and everything. And after everyone had left the party, I sat down and I opened up my laptop. And computers weren't a big thing then, like, not everyone just had a laptop in their house at that point, but I opened up my laptop that I had from college, and I see his emails just setting up there. And I'm like, That's so weird, because there's no emails in there, and it's up on my my laptop, not his. And I'm just like, who does that? Like, that's all I thought in my head was, who does that? So instantly I go to the deleted because, like, who does that look in the deleted file? And there's a bunch of Craigslist ads, man for woman willing to host in my house. I have my three kids full on nude pictures of him, like, posted on Craigslist with his face and everything. And I quietly sat there and forwarded every single one of those emails to my personal email. And got up and I said, I will be back shortly. And we had moved to the town, my hometown, that I was from at the time, and I just drove over to the attorney's house, because I knew everyone in town, and I said, Here's what I have. And he said, Great, we'll file for divorce tomorrow. I said, sounds great. Oh my gosh, yeah. Okay.

Scott Benner 23:33
There are some times that people tell stories and it's easy to get caught up in the how crazy they are part of it, but I tend to feel them a little differently, like, I can't believe that this is something you had to go through. You know what I mean? Like, Yeah. And do you think it mostly stems from just living in a place where the healthcare is shaky and the options to pick boys is shaky.

Robin 24:01
No, I don't think that. I think he was a good person. This is, this is the bipolar I have a problem with separating this out, like people will tell me things were really bad the last year with him. It wasn't just the fact that he was, like, cheating on me and disappearing in the night. He was also, at that point I'd gotten an insulin pump, okay? And I don't typically share this with a lot of people, but it's like, at this point, I don't really care, because it is what it is. He would turn off my insulin pump and let my blood sugar go high and then record himself sleeping with me so that I wouldn't wake up. And, I mean, it was, this was an awful, awful situation. Oh my gosh. And by the time we got, like, the foul for the divorce and this had happened, it's like, it, honestly, it was so hard to wrap your head around everything that was happening in that moment. And I have a hard time holding a grudge against him and saying he was a bad person because he was, he was a great father. And husband, up until the bipolar, the bipolar was like a light switch, you know,

Scott Benner 25:04
wow. But you're saying he would assault you by raising your blood sugar and making you kind of more like, kind of comatose.

Robin 25:11
Yes, turn it off, and then let me get into a deep sleep, and my blood sugar is high, and it's hard to come out of a sleep when you're three

Scott Benner 25:19
400 I didn't think you're gonna say anything worse, and then you just, like, you just opened your mouth again, and then something worse came out. And I was like, geez, oh, I'm sorry, but you are somewhat able to separate his disease from what was happening too. Like you're able to say, Yeah, this was not who he was before this happened to him.

Robin 25:36
And I think that's what a lot of people have trouble with when they tried to say, Oh, he's a bad person. He's not a bad person. This is not something he chose like. And that's hard for it was so hard for me to even follow the divorce. It was such an emotional thing for me, right? Because this is somebody that I spent 10 years with that I loved, I loved so much, and he was a good person to us. And then it's like, it's almost like, when you think about someone that got cancer and you divorce them because you don't want to be with them because they're sick, right? Like, that's not something that you want in life.

Scott Benner 26:10
You have experience with that as well, don't you? Yeah, and that's

Robin 26:13
something that out. I was going to bring that up too, but that that's part of this divorce was part of that because, you know, the divorce was a year and a half long, and that was all traumatic that entire time, too, because during that time he was doing things that were like, turning off my internet because I was working on my master's degree. He would shut my phone off. He would go to the court and tell the court that we're going to work things out, and they would cancel the hearing and stuff like. It was really crazy. Without even talking to me, they would cancel the hearing because, you know, it's small town, so they don't know any different, right?

Scott Benner 26:51
I have to tell you, when you said he'd go to the court and cancel the hearing, I pictured Boss Hogg and Enos straight in the courthouse on the Dukes of Hazzard, but I don't know how close I am to being right about that. No, I

Robin 27:03
mean, they have, like, a police force and stuff, but it was just like, such a wild moment. The police have been out to my house a couple of times, like, because he had shown up with the kids on his scheduled drop off and been like, Oh, I'm moving back in. And I'm like, No, you're not. He's held me at gunpoint. Like, I mean, this was a wild year and a half. So during that time, this is how I met my next husband. Okay? Because I was like, who is going to want somebody with three kids and a freaking insulin pump, right? And this is all I could think about, like, I have these moments where it's like, I got this crazy ex is trying to kill me that's hiring PIs to follow me send pictures to my six year old asking, Is that your mom's boyfriend? And I'm like, and I just need to get out of here, like I'm in a small town that they don't really care. So I met somebody that was two hours away, and I was like, Yeah, this guy's got a stable job. This seems legit, like he goes to work. He's been there for 10 years. Thought nothing of it. He didn't drink. And I was like, Yeah, okay. I mean, I was going through a trying time. This is the one and only time I've ever been admitted in the hospital for my diabetes is during that divorce, because I would go to this other guy's house that was two hours away, and I would drink to oblivion and then end up so sick that I was throwing up, and had no connection in my head that this was, like, diabetes related, because I didn't receive any training on it. It was like, here's some insulin, and this is how this works. And you know, you have a GP handling it. So I didn't know what was going on with that. And I ended up getting with him and thinking this was safer to move and be with this person. Then being there, where my ex husband knew where I was, it was trying to murder me.

Scott Benner 28:47
So you and drinky claws get together and you take the kids over to his place.

Robin 28:50
Yeah, exactly like he had. Well, he didn't meet my kids for probably, like, six months. But then I just jumped right into that. I moved in with him a year and a half later, and it was, it was super crazy. The whole situation was crazy looking back, you know, wasn't the wisest decision in my life,

Scott Benner 29:07
but it was better. It was like jumping out of the window of a building that was on fire, exactly, yeah,

Robin 29:14
and that's really how I frame that in my head now, but it was not the wisest decision, so I ended up moving in with him and finding out that I was pregnant with our fourth that same week. And I'm like, Okay, well, I guess I'm stay in with this. And right off the bat, things were bad with him, like they were so bad because he drinks. So he would drink two cases of beer a week. And I'm like, That is a lot of beer. And I'm not even talking like just the little birds. It's like the big bush bricks. It's like 25 so this guy was like, he was constantly drinking all the time, and he was just very, very manipulative, very belligerent. Would put you down, like, he would tell me things like, I don't know why that a company pays you, because all you do is pay. For work. He didn't realize what human resources does. He hit me at one point, we were out on the back patio, and this was shortly after our child was born. She was probably, like, three months old, and I was drinking wine on the back patio and talking about how I think it's ridiculous that high schools will push kids into skilled trades. Like right now, there's a massive push for skilled trades. They'll tell you, you can make $30 an hour in skilled trades, yeah, because there's such a shortage in it, because they've sent all the millennials to college, and they really need to space this out, you know, like this is my logic in my head. Is you really need to look at a child and say, what are they a good fit for? And send them to what they're a good fit for? Not that our economy is short on people that need higher level education, or they're short on a skilled trade, because that's not going to work for everyone. And I'm explaining this to him. And of course, he's in a skilled trade, so he gets mad about it, jumps up, hits me in the face, and shakes his chair and says, you want a divorce. This is your reason for a divorce. Get out of here, and I'm like, so immediately I know, I know this is a problem. Like, being with him is a problem.

Scott Benner 31:06
So wait, did you want a divorce? Like, was that a thing you had been talking about, or did he just, like, get so upset that you were talking about the trades that he smacked you so that you could have a reason to leave him? Is that I'm so upset like Robin,

Robin 31:21
I don't, I don't know. I think he was deeply offended, and he thought that I was trying to say that his job was

Scott Benner 31:29
worthless. No, you were trying to say that people who make good plumbers should be plumbers, and people who make good accountants should be accountants. We shouldn't just make everybody plumbers or everybody accountants, because we need them in the moment. That's what you're saying, yeah. Okay,

Robin 31:41
all right, yeah. But he didn't understand that, so he just got upset, and then was violent. Yeah, geez. Okay. It was a really crazy situation, but I didn't leave because I just had a baby, and I'm like, who's gonna want somebody? It's got two baby daddies and a pump. Now, right

Scott Benner 31:58
before it was, look, I got three kids and a pump. Now I got four kids a pump, but two baby daddies like this list is starting to look unattractive. I got to stay with the guy who just thought to smack me because I said that welders should be welders, and now I'm really screwed. Like, wow, now you're stuck, stuck. You

Robin 32:16
feel like I'm like, I'm super stuck in this. He gets caught cheating every single year and tells me to deal with it. He doesn't give enough deal with it. And I'm like, Are you kidding me right now? And then, it wasn't until we during covid times, we ended up moving up closer to his family, mainly because unexpected pregnancy I had. We had already had the fifth child by then that had an unexpected pregnancy, and unfortunately lost that baby. But in that meantime, we were like, No, this is too many kids. And I was like, you know, we don't have a lot of help. And he said, well, we'll just move out to Blackford, which is like another town or whatever, and which is closer to his family, is like 45 minutes closer to his family. And that's what we do. And we weren't there maybe four or five months before he's caught cheating again.

Scott Benner 33:04
Where did these guys I have to every time I ask the same question? Was he super handsome? No giant penis, bunch of money, none of the things, right? Like, where do these guys find these girls? Like, that's the thing I can't like, I can never wrap my head around my wife won't cut me a break on anything ever this guy can trip around the world having sex with anybody he bumps into a Craigslist the other guy, a Craigslist dad. Can you imagine on by the way, for you, you guys in Canada, that's Kijiji I don't know what to say. Women need to have higher standards. And guys like, who are they preying on? Every time someone's told one of these stories, my brain goes, I don't understand how they found somebody to cheat with. Like, that's the thing I can't well that

Robin 33:51
he knows, like, he had like, a group of women that were almost like, like, what do you call those band people that just follow the band around, groupies? Yeah, he had like, these groupies that would come to his parties. Like he was, like, the cool dude that would host all the parties that nobody wanted to be with, but they wanted to come to the parties and drink at his house type of thing. This is all around alcohol, right? Yes, all around alcohol. And he's, like, he's just got this band of groupies that keep cycling back over and over and over. So, like, it's all the same women, but I didn't know, because he was from I met this guy two hours from me, and I'm thinking, this is safer, but no, he's out here just, you know, sleeping with all these women and stuff.

Scott Benner 34:30
But at some point you were one of those women. You just happened to marry him, yeah,

Robin 34:35
but I didn't know. I didn't know what was going on. My gosh, okay, actually, when I was dating him before we found out that I was pregnant, he had this one girl living in his house that I didn't even know that she lived in his house, and then she left because she caught him talking to me. And this is kind of like a full circle situation that I can get to afterwards, but I'm going to tell you real quick about it. When I ended up divorcing him and leaving him, that girl is back with him. Now has a baby with him. Oh my

Scott Benner 35:01
god, everyone do better and stop drinking. Please. Just everyone stop drinking. And then just find something you are interested in and put some effort into it. Spend some time on something like get a hobby, go for a walk. I just stop, stop. I can't.

Robin 35:20
I actually don't even drink at all. This is the only time in my life that I drank. Was that one year stint

Scott Benner 35:26
when you were, like, completely freaked out by the bipolar experience. And

Robin 35:31
yeah, that's the only time I ever drank. And then I would drink, like, maybe a glass of wine here and there, but I've never been like, a

Scott Benner 35:37
I mean, you can have a glass, you can have a glass of wine, you can't be using cases of beer as seating, like, didn't? I mean, like, it can't be stacked up in the living room, because there's nowhere else to I can't you guys, you got to do better. Well,

Robin 35:50
I never drink beer. That's not my thing. I would drink wine. That's what I'm saying, is, I've never been a drinker. So obviously, after having a kid with him, I was like, This is crazy,

Scott Benner 35:59
yeah, okay, I'm sorry. All right, so, all right, I don't know. Where are we? Oh, you're you left you left him. He knocked somebody else up. You left him. Where are you now in your life, and how are your How does your diabetes? Are you even paying attention to it through all this? How do you manage? So I was

Robin 36:16
paying attention to it through all of that, like I've always been very on top of my diabetes. I've always been very anal with it, and just like watching this and stuff, but with him, we moved to this other county to be closer catch him cheating again. His sister helps me catch him cheating number one, and then a couple. His sister lives down the road from us at the time. And then it was like, maybe, I think it was 2022 I went to the endocrinologist, because I saw him every three months, and they just did their normal blood work. The endocrinologist calls me and he's like, Hey, I know we did blood work three months ago, but this blood work shows that your GFR is under 40. And I was like, What do you mean? So then I'm like, going and looking through all the history my blood work has never shown that. I've always been over 100 like, every single time. And what does that mean? Well, your kidneys aren't functioning, right? Or something like, it's not like an end all be all, but a GFR is, like, a initial indicator of kidney function. Okay? So they were like, Yeah, this is really concerning. And I was like, okay, that's not great. And of course, I didn't go back and tell my husband at the time, because, I mean, he was busy doing whatever he's doing, finding other women, I guess, I don't know, so I didn't even tell him anything about it. And I waited another two, three weeks, I think, went back in, did the labs again? It just kept getting lower. And they were like, Oh my gosh, we're gonna have to send you to, like, a kidney specialist. And I'm like, What in the world? And I came home and I tell him about this, and I'm in tears, and I'm like, you know, my kidneys are gonna fell. Yeah? And he said, Yeah, I don't want to be with someone sick. You need to leave. Oh, okay. And I was like, I'm okay, great. And I'm not even gonna lie, I literally left the house and went down the road and called my first ex husband in tears and told him that my kidneys were falling. And he said, I'll, I'll go get piped you can have one of my kidneys. And I'm like, No, I don't want your organs.

Scott Benner 38:13
I just don't have anybody to tell anything to. I need help. Yeah, you're all by yourself.

Robin 38:20
Yeah? Yeah, it was so upsetting, like, the whole thing was just upsetting to me, and I had to just leave, you know, so I started the process of leaving him, and I got an apartment. I got a house, and it sucked. It was literally, like a two bedroom house with five kids, and I was renting it, and my life hell, he was making my life hell the whole time. And lo and behold, one of his groupies circles back and moves into his house before we're even divorced.

Scott Benner 38:53
Well, she better not get sick. Wow, I'm sorry. Word for word, I don't want to be with somebody sick. Get out. Yeah,

Robin 39:00
word for word, for word. I don't want to be with somebody sick. You need to leave Jesus. I'm gonna need to

Scott Benner 39:05
do seven interviews with people with great stories to get this out of my head. And it's your life. It's not a story. It's like, it's your that's what keeps striking me, is that it's, this is not a story someone's telling this happened to you?

Robin 39:18
Yeah, this is my life. And it's crazy. The whole thing is just crazy, and that's crazy. He drug me through the mud. He told everyone in the county that I cheated on him, and that's why I was leaving. I've never even told people this. Never told them, but he told everybody while she cheated, she was a hoe. And I'm like, Is he kidding right now, like, is okay, whatever, even his sister, his sister testified to a guardian ad litem that she didn't know that I had diabetes, like she knew that I had diabetes, but it wasn't really serious.

Scott Benner 39:56
Can you move? Is there a place to leave to like, I don't understand. All right. Well, you know what? We're 40 over 45 minutes into this. The rest of your story might need to be a different episode, but I'm not sure exactly, but, like, I want to keep going. But in the end, can I guess what happens? Do you need a kidney transplant?

Robin 40:18
I do not actually, my actually, after I moved out, it was the strangest thing, my kidneys just rebounded like that, back up over 100%

Scott Benner 40:26
maybe they just didn't like being near him.

Robin 40:31
Was this a sign? Was my kidneys telling me to leave

Scott Benner 40:33
so your kidney function testing eventually cleared up?

Robin 40:38
Yeah, it just they don't know why. They don't know what happened. It was about, like, three months worth of issues with the kidneys, and then it was like, poof, yeah, I just cleared right

Scott Benner 40:48
up. Okay, so how do we get to the part where you don't have diabetes anymore? Like, what's the path to that?

Robin 40:53
Yeah, actually, I met somebody. I've known him a while, but he was like, Hey, come get coffee. And I was like, No,

Scott Benner 41:01
you're like, Listen, I'm a lesbian, for sure. Just get away from Yeah, yeah, get you guys need to get out of here

Robin 41:06
converting. Maybe I'm gonna become a nun, right? Yeah, whatever. I don't know at this point, but I'm hard pass on that. So he spent seven months asking me to get coffee, and to the point that he was like, I don't I just was like, Look, I'm gonna, I'm gonna show up at six in the morning because I have to be at work, and I got five kids, and I don't really have time for you. And if you want to get coffee at 6am I guess that's when he's like, dill, geez.

Scott Benner 41:31
He must really like kids go ahead, exactly

Robin 41:33
like, I don't know. And he knew I had two ex husbands. He knew what was going on with that. We go on. We meet up for coffee, and we things just went better than expected. You know, we ended up getting together, and I was probably at the rental maybe a total of maybe six months, because I had met him like long before that, but I told him I was married. And I was like, Yeah, I'm not interested in doing anything. So this is how we knew each other. He knew me married, and he'd asked me to just get coffee as friends multiple times throughout that and I was like, no. So we ended up together, and then I bought a house the day that my divorce was finalized, and then we ended up moving in together. And it wasn't a situation that was like I felt like I was trapped or I was trying to get away from anything. It's like, this is my best friend. You know, we stay up late at night talking. He likes question 30. I like to ask really strange questions at, like, 1230 at night. Like, if an alligator came into our house, and he's like, we don't live, where alligators are?

Scott Benner 42:31
You say, Listen, man, this isn't the game. You got to give that part up. The alligator comes in. What do we do now? Oh, I'm

Robin 42:35
just like, how you got to take care of that, because you can't really kill it. And sound like I just asked him, like, I was asking like, these random questions, or I almost killed us one time with a spider, because the spider crawled up my leg in the car and started freaking out. I jumped on top, and he's driving. I'm like, pull the car over right now. And he's like, what is happening? There's nowhere to pull over. You

Scott Benner 42:53
found a guy you liked. You didn't feel like you were it does suck because you're in the bad rental, and people could make the point that you're trying to escape again, but you sounds like you felt really comfortable this time. This is the first time you were feeling like I'm making a decision because I like this person. They like, yeah, okay,

Robin 43:11
are you still with that guy? Now? Yeah, we're actually gonna get married.

Scott Benner 43:15
Oh, good for you. Okay, so, so you so you guys get together, and then what? What happens with your baby? Like, that's

Robin 43:22
where I was going with this we move in to this house together. Like, I literally bought this house and moved in in November, and I'd went to the end though, and I'm like, come to end though, everything that's happened and stuff, because, like, by this time, I've been seeing him for almost a decade, so he's like, You know what is going on? And I'm like, Yeah, this is super crazy, and

Scott Benner 43:41
you're asking the wrong person. You don't want to hear this, but go ahead right now. He's

Robin 43:45
like, always super interested in the whole process. And he's like, he tells me, I know a guy. And I'm like, What are you talking about? You know a guy? He's like, Oh, I know this guy. He can help out with the whole diabetes thing. And I'm like, Yeah, that's why I come to you, right? Like,

Scott Benner 43:59
do you feel like someone who was selling you something in an alley at that point? I know it got like that. Yeah.

Robin 44:07
The funny thing is, is he did not know him. He just heard about the research that this guy was doing, and at the time, University of Chicago was the only one doing islet cell research. But he wasn't necessarily referring me there for the islet cell. He said you would make a great candidate for a pancreas. He's like, You are always on top of your numbers. You're always looking you're always making adjustments. You're a perfect candidate for this. If you're this sick of the diabetes and you feel like this is holding you back, because this is what I felt like. I was trapped with people in my past because, well, not my first husband. We were we just met. We're young, but definitely felt more trapped later in life with the diabetes like this is what I had to settle for. I had to settle for an alcoholic that was abusing us and using my kids at that too, and stuff. And then I had to be with him because of his diabetes, because who wants that, right? So he's like, No, if you're very serious about this, I know somebody. And I was like, Okay, great. So he tells me. Here's this information. I emailed that doctor in January, and it was January of 2023 emailed this doctor. I said, Look, I've been type one for this many years. I've got five kids. I had my uterus taken out this point as a whole different story that had, like, some anemia issues where they end up taking out my uterus and stuff. I'm like, I've already had hysterectomy. Here's where I'm at in life, and I don't want diabetes anymore. Can I have a pancreas? That's literally what was

Scott Benner 45:26
like. And this person was doing research. What's this doctor's name, Dr

Robin 45:30
mukowski. He's out of University of Chicago. Yeah, I just looked him up and emailed him directly. Okay? Emailed me back immediately and said, Are you available this afternoon for a phone call? What I was like, Oh, sure. Am where we're going with this.

Scott Benner 45:45
And what was his research?

Robin 45:47
He's a transplant doctor. Like, that's what he does, is transplant at University of Chicago. But he also does Islet Cell Transplant Research. Like, that's something big. He also does T, P, a, i, t, which is like, total pancreas removal, and then they do like islet cell, like they take your your pancreas out, harvest your own islet cells, and then put it back in you for people that have chronic pancreatitis. So he's a transplant doctor, that's what he does. What's his first general couture p, i, t, I, O, R. He emails me immediately back and calls me that afternoon, and he just goes through my history, and he doesn't ask me why I want rid of diabetes. I'm guessing he's probably heard at all at this point, but I'm like, I don't want diabetes, so if we could just, you know, get a pancreas, that'd be great. And then he says, okay, my research coordinator will be in touch with you. And it was probably a two month process where she met with me, and then she did like, a two hour presentation where she showed me the different options, and not once did they pressure me. I want to make that clear. They don't pressure you into anything. They're like, you can get a pancreas Sure. We could put you on the list and give you the pancreas, and then they're like, but we also have this research going on, and you could also opt into this research. And here's what the research is. And they gave me, like, three different options for research. One of them I didn't qualify for, because you had to be a certain blood type for that. And honestly, that's the one that's like, really in the news right now with the tag a rupart taggarup heart is a medication that is less invasive and anti rejection medication so it doesn't hurt your kidneys. But you had to be a certain blood type. And I didn't qualify for that because of my blood type, but they told me I would qualify for certain Nova if I passed the testing. So I was like, yeah, absolutely. Sign me up. No questions asked. I just wanted to be signed up because I didn't want to have diabetes, because I felt like diabetes has been a path in my life that's been so destructive.

Scott Benner 47:39
Can I ask you, is that because you have this feeling that having diabetes makes you less attractive, I don't even mean physically, but just less attractive as a mate, as a friend, do you have that feeling inside of you, or is it just that people have actually treated you that way? So you know, that's how you're being treated like is there any point where you think it's not the diabetes, it's the people I'm meeting, or do you think, well, the people I'm meeting seem to feel like this, and I'm not going to meet different people, so it's the diabetes. Does that make sense?

Robin 48:11
Yeah, well, with my first husband, no, I didn't have diabetes when I met him, right? So that was a non issue, and he went through a lot with me, like us finding that out, doing all the trainings and figuring things out like that. That was hard. We went through so much together. He would wake me up in the middle of the night and complete sweats because my blood sugar was 20 and begging me to eat, and I'm crying and I just want water. Like, I don't think that was the case with him at all. Okay. Now past that, you know, I got pregnant young and had kids young. So like, I was 23 I was two weeks into being 23 when I had my oldest. I guess I just didn't find it attractive. I just at that time, it was probably 20 years ago. You really hid your diabetes. Like, even at work, even though I worked in human resources, I'd seen it happen. Where people were, they were like, Oh, we don't want to hire somebody that has medical issues type of thing, you know, right? So it's always just been something that I've just been quiet about, and I've tried to hide it, and then even getting out of college and going into, I say, like, the big girl jobs and stuff, you didn't want to be digging an insulin pump out of your bra, like in the middle of a meeting, you're in corporate meetings and stuff, and it was embarrassing to me. Yes, it was embarrassing. It was something that I just hid. And I dealt with my first husband. He knew all about it, obviously. And we would look at things together. And he was super smart, like he can literally do equations in his head. That was crazy amount of equations. He would look at my numbers and say, Oh, we got to modify this and stuff. Now my second ex husband, he didn't hardly have anything, but he would show up to pump training when I got the new tandem pump, you know. So he would show up to that, but he would just act oblivious to the diabetes, like this wasn't his problem. It didn't involve him. So, yeah, I felt like it was something that makes you less attractive.

Scott Benner 49:57
Yeah, okay, I just want to understand. Where you're coming from. So by the way, I'm just gonna tell people, because Robin's story is so crazy, I looked up Dr Witkowski. He's a real person.

Robin 50:10
Yeah, he is. And you know what? I bet he would go on your podcast

Scott Benner 50:13
too. No joke, that'd be awesome. But, but, okay, so you meet him, and he says you might be eligible for some studies. So what did you end up doing and and what did he end up doing for you?

Robin 50:24
So we, we went up there and did testing. The testing is really rigorous. They literally scan everything on you. I'm talking like they ultrasounded every organ I own. You do all kinds of heart testing. You literally get tested for anything and everything under the sun, and then they have to wait to see if you qualify, because there's a couple blood tests, like if you pass the health part of it, there's a couple blood tests they need for you to qualify. For one, you have to be able to match, like an organ donor. So women, in particular, when you have multiple children, you can become sensitized to other blood types and other organ tissue, things like that. I don't really know the technical terms, but they had that test had to come in. And then for my particular study, I think you had to be epstein barr, positive, maybe, or negative. I don't remember which one it was. I qualified. Whichever it was. I qualified. My sensitivity came back as zero. I wasn't sensitized towards anybody. So like, Yep, you're a great candidate. And that took a little bit. So that happened in March of 23 and then once all everything came back, they said, Okay, we're ready to go. They scheduled me in May of 23 to have pouches put in my stomach. So the study that I was in was ternova, where they were testing out pouches in your stomach. They put the pouches in. They're like mesh pouches that kind of resemble like hernia repair pouches. Okay? And then they would put islet cells in those pouches to see if those pouches could produce insulin or C peptide. They're trying to find a new home for islet cells to see if it works, if it would do better than what they already do, the inner portal ones that they do in other countries. We don't do it here, but in other countries. So that's what they were testing to see if it was more effective. Now, I didn't sign up in an initial thing. That's something that I think people need to understand is that when they're in phase one trials, they're testing to see if those are dangerous to people. Phase two trials are looking for efficiency. I signed up in phase two. I wasn't trying to sign up to something that was super risky. So they put the pouches in, they let the patches vascularize, which is just grow blood vessels all around them, so that the islet cells would have a blood supply. I was in the hospital for maybe, like five days. No, I was in hospital for two days, and stayed in the hotel for three days past the pouch surgery, and then we let those marinate a little, is what they call it, or whatever. And then came back when they had donors. You know what? I forgot. I had to do thymo induction too. Thymo induction was like a week long, and that's where they kill your immune system. So you stay in the hospital and they're killing your immune system. So that was interesting. It's really rough. It kind of like having a really bad flu that you stay there a week. They monitor you while they do it. I ended up with serum sickness after that, and had to go back to the hospital for a week. So,

Scott Benner 53:15
and this is all just to get ready for these to put in the cells. Yeah.

Robin 53:19
So not everyone gets serum sickness. That's just, they say it's typical with people that's been around, like horses and rabbits, and if you've been, I think blonde hair, people like light skin, blonde hair, tend to get it more often. But yeah, so that was just an extra. I was just being extra.

Scott Benner 53:36
Okay. Okay, so you get this procedure and you wake up and you don't have diabetes anymore.

Robin 53:44
No, that was a whole process with that. So we did those, the islet cells in the abdomen, and those actually stabilized my blood sugar. They went in and did those, and I want to say it was probably within a couple weeks, I didn't have highs or massive lows anymore. I would get up into the 200 Sure. But before they put the initial islet cells in, I would drink coffee in the morning with like, three tablespoons of creamer, and I would hit 400 every day. Every single day. It didn't matter, black coffee and three tablespoon spoons of sugar free creamer, and it would just skyrocket. It would come back down. But it was skyrocket. So after they did the initial islet cells in the first set of pouches, it would be like, maybe 250 max. And then I would never go low. I didn't ever get below 70. So that was never an issue. I think the lowest was maybe like 55 one time out of nowhere. But outside of that, I didn't have lows. So then they were like, Okay, this is really good. You go back at three months and you do C peptides, you do middle tolerance testing, where you drink, like an insured drink. They draw your blood every 15 minutes. They check your C peptide and stuff, and all that was coming back. Pretty good. We transplant a second time, but in between the first and the second transplant in the pouches I had gotten the most. Yeah, and because of the anti rejections, I didn't know I had pneumonia, so I ended up going septic. And I was just like this, happy as could be. Had no idea that I had sepsis that had went in because I had a fever, and they were like, Yeah, you're septic. So we had to lower transplant meds in between the two transplants, and then they transplanted, maybe, like, a month after I had sepsis, into my lower abdomen, and I ended up rejecting because of that, because the transplant meds were lower and we didn't have time to build them back up, so my immune system rejected those. So what we did was we went in and we took all those out, and then it was October the ninth, 2024 we went in and did the portal liver vein portal transplant. They took islet cells and stuck them in my liver vein portal, and I woke up not diabetic. That was wild. When was this? That was October of, 2024 October 9.

Scott Benner 55:57
2024 Wow. So you're on anti rejection meds. On anti

Robin 56:01
rejection meds. Okay,

Scott Benner 56:03
and is that like a lot of pills that you take every day? Or how does that work?

Robin 56:06
No, actually, I do an IV every four weeks of Bella, and I go to Chicago for that. Right now, once I'm out of research, which will be one year post transplant, they'll be able to get it locally. But right now, I go to Chicago every four weeks and do my bellicep IV, and then I take tacrolimus, low dose. Like a lot of people that have transplant, they take my for deck, they're taking tacrolimus. They take steroids, like you have a bunch of pills, but because I'm on bellicep, I only take tacrolimus and a low dose.

Scott Benner 56:43
But that's it. Okay. And so how long has it been since?

Robin 56:47
It's almost a year. So the ninth will be a

Scott Benner 56:50
year you haven't taken any insulin.

Robin 56:52
No insulin. Nope. My a 1c, is 5.1 right now?

Scott Benner 56:56
Wow, that's good. It's insane. Can you describe some ways that it's changed your life.

Robin 57:01
Everyone always asks you, what are you going to eat? And I'm going to tell you, if you've been diabetic for any amount of time, you don't care about that food. Nobody cares about the food. I have not changed my diet whatsoever. What I cared about was going to bed and not hearing a beep, sleeping through the night, not worrying that my kids were going to find me dead in the morning, because dead bed syndrome is a thing, and type ones, you know, those are the things I cared about. My kids have even been on my Tiktok before and talking about how, like, what the difference is me not being diabetic? And they're like, they'll straight tell you you're not. Like, get me food right now. I have to have food right now. All my kids have ever known is the diabetes, the need to carry apple juice and snacks and stuff. We go hiking. I've been to Colorado, to the mountains. I went watched my sister get married without an insulin pump. I didn't have an insulin pump. We went to Utah on me and my fiance went to Utah in January, and I did have my insulin pump with me because I was too nervous. I was hard to part ways with my insulin pump.

Scott Benner 58:05
You traveled with it because you thought, what if something happens? And I suddenly need it?

Robin 58:09
Yeah, I still have my insulin pump and it's still loaded with insulin in it, but I do leave it at home now, but I still have loaded

Scott Benner 58:18
it's more about the stuff that happens around diabetes and the fear you have than the process of having to take care of your blood sugar. Like, is that? Am I understanding that correctly?

Robin 58:29
Yeah, it's just it's mentally exhausting sitting there thinking, like, if I eat that, do I want to pay the price? Do I want to risk giving myself so much insulin and trying to combat that? Do I want to spend my day doing that? Do I want to spend my day feeling like crap because I have to fight these highs and lows? You know? That kind of stuff has been it's life altering. Yeah, that's awesome, and it's embarrassing listening to your pump beep. You're in a meeting, you know, and your pumps going off, and now they're like, What is going on over there? Or people saying, silence your phones. I i went to an orientation at one point when I was married to my first husband, and I was in HR, and somebody told me, cool pager, I'm like, actually, it's an insulin pump. You work in HR.

Scott Benner 59:12
Cool pager, thanks. Yeah, it's great. Okay, so what are the I mean, it's obviously sounds magical, but what are the downsides?

Robin 59:20
I think the downsides for me was the trial itself. So like, all the surgeries that I had with the trial, I had four or five surgeries all together within like, a year, and that was a lot for me. But if you're just doing the inner portal, that was amazing, to be honest. Like, I don't have a ton of downsides with that. I had a band aid coming out. I didn't have it wasn't a major surgery. I had a band aid. I was awake through the process. I had a panic attack on the table. I will say that I don't really know why, but they checked everything out, but I had a panic attack. But when I woke up, I literally just had a band aid on my side. And I would say that sometimes the anti rejections are a struggle. So. If you're new to it, and you're just going in and you're just getting an islet cell transplant, I would anticipate that starting those anti rejections would be rough, but I'd already been on them for a year when I did the final transplant, so it wasn't as rough for me. But figuring out those anti rejections was a little bit hard, because they lower your immune system so bad they got to figure out the right amount to give you. So there was points where I didn't have any white blood cells and I just felt completely drained, and I was sleeping a lot and just didn't feel very well. Yeah, I wouldn't say that it was a huge hindrance. I mean, I just started the job I have now. Two weeks after transplant, they called me for an interview. I was like, Hey, I'm getting a transplant. Can I interview like in a couple days? And they were like, sure.

Scott Benner 1:00:47
Are you more susceptible to cough, cold, flu, stuff, or what are your worries around that about having a lower immune system?

Robin 1:00:56
Well, I got seven kids at home, and I would say that I am not any sicker than I was with diabetes. I've always had an issue with my lungs. This has been a long standing issue. Even before transplant or before anti rejections, I would get pneumonia fairly easily enough that I would go get, like the old people, pneumonia shot. You know, every five years I would get that. So in the past year, I haven't I've gotten sick once, and that was just actually a couple weeks ago. I had to go. I went and got my IV. Didn't know I was sick. It's been humid here. I thought it was just hard to breathe outside. And then I got up that morning and went to church after my IV. We have a nurse practitioner that just goes to church with us. And she was like, You're you don't look good. I'm like, Yeah, I know. Like, my oxygen has been a little bit low, but maybe I'm just tired from the IV, I don't know. Like, it was a long day. She said, No, you need to go to the hospital. I said, Okay, so I went to the hospital, and then they did all the work up, checked my heart, checked everything, looked at, didn't chest X ray. They said, Oh yeah, pneumonia. I'm like, okay, great. And they're like, this could be partially collapsed up here this long. But this is not a new issue for me. It's not anything that's above and beyond what I've had in the past.

Scott Benner 1:02:10
Okay, so there's no restrictions that the transplant surgeon gives you about being out in public or no.

Robin 1:02:17
They tell you, if you're in a crowd, that you can wear a mask, but I don't wear a mask, and I haven't had any issues with it. Okay? And I work with people all day, like I work in human resources. People come in and out all day. Now I will tell people, if they appear to be sick of any way, please do not come in like, I'm like, No, stay right there. I'll stop them. Do you

Scott Benner 1:02:36
think there's a time five years from now that you'll be like, I can't believe I have to get an IV every four weeks, no, no, never, because the win is worth it.

Robin 1:02:44
Yeah, absolutely. I mean, now later on, after being a year out, I can eat things that I would have never ate. I didn't eat mashed potatoes in 10 years, but I was like, these are pretty good.

Scott Benner 1:02:57
I remember potatoes, wow. And your kids have seen a big change, too.

Robin 1:03:01
Yeah, we actually, we still eat very healthy. We eat a lot of Mediterranean food, so we eat healthy. But I will say that Pizza Hut does Do you remember as a kid, used to get the book at things, and you would get, if you read so many books, you would get a little personal pan pizza, I don't know. Oh, we used to do that in our area, okay? So you could read all these books, and then at school, they would give you, like, a little ticket, and you could go to Pizza Hut and get your personal pan pizza. They recently Pizza Hut came back with personal pan pizzas that are like, $2 on Tuesdays. So I will say that the last three or four Tuesdays, we bought personal pan pizzas for everyone in the house for dinner, and I ate them, and my sugar peaks

Scott Benner 1:03:39
at like, 140 Yeah, just like everybody else's. Huh? How about that?

Robin 1:03:42
Yeah, just like everyone else. So there's some things I will do, like, I will eat now that I would have never ate in a million years. It wouldn't

Scott Benner 1:03:49
have been worth the risk for you. Do you ever check your other kids? Like, is there other autoimmune through your children? I do check

Robin 1:03:55
them, actually. So I'm a very big advocate for the trial net. Are you familiar with trial net? Yeah, of course, yeah. So I'm very big advocate for that. I test my kids. I just did one on a tick tock live, actually, earlier this week, tested one of the kids, obviously not showing like all that, but we walked through it and tested her blood sugar, not her blood sugar. We tested her blood and shipped it out this week. But minor on that five year cycle that they got all got tested five years ago, recycling, back, retesting now and then we send them for the antibodies. None of my kids have any major health issues. My oldest daughter, the one that I was undiagnosed diabetic with, she has gut issues, and we don't really know what that is. So we've been to the GI specialist, and we've been doing a lot of testing. It's not celiac, so we don't really know if it's a gluten intolerance or what is going on with that? So for a while, we all a low FODMAP in the house, and everyone was really mad about that.

Scott Benner 1:04:49
Yeah, I've done an interview with somebody who had to go through that. It did not sound fun at all. Wow. Okay, holy crap. Robin, yeah, you're okay now,

Robin 1:04:58
wild ride. Yeah, I'm. Good now we're getting married in October. Steve and I are good for you. Congratulations. He's a very, very good person. He has a lot of patience. He's bald, though, and it's probably because all the patients he had, he grew up with four siblings and no brothers, or like, four sisters and no brothers. I feel like he was built for this, living with seven girls. It hit.

Scott Benner 1:05:19
Had you ever figure out why? I mean, obviously, you're getting married now, but like, you've been through a couple of guys where you had a ton of trouble with, obviously, but like, at that moment, you're like, there's a guy, like, I have five kids, and I have all these, I have health issues and, you know, everything and, and I just went through this with this other person. Like, why is he interested in me? Did you ever like, has he ever, like, quantified it for you?

Robin 1:05:40
No, we've never really talked about, I wouldn't say that in particular, he was going through a divorce at the same time, and I think that a lot of that was just a friendship that had formed prior, like we were just very close. Like we talk about anything and everything. I tell him the craziest stuff, and he's like, okay, is I don't know. I have no idea. He always tells me, it's because I'm smart. He really likes how smart I am and resilient. I'm always very kid centric. He talks about that a lot. I'm always doing things for them. Did he have kids? Yeah, he has two girls.

Scott Benner 1:06:16
Okay, so now you have so do they live with you guys? They live

Robin 1:06:20
they're 5050, his ex wife lives like maybe two miles from us. Okay, so they

Scott Benner 1:06:26
will go there. There are seven kids in your house at some points during the week. Every other

Robin 1:06:31
week there's seven. So two of mine are on an every other week schedule, and then his two are on an every other week schedule, but we're on the same schedule. And then three of mine are at my house 100% time because of that first ex husband I had that was bipolar. He just stopped talking to his kids like it was very random out of the blue. There were some situations going out where he remarried and I think she's crazier than he is.

Scott Benner 1:06:56
You think his illness got in the way of him being a father at some point?

Robin 1:07:00
No, I think it's the new wife. Be honest. I got you. She was offering me healing crystals to heal my diabetes, like this is, yeah, that was, that's a whole crazy thing too. Did you try them? I did not try the healing crystals.

Scott Benner 1:07:13
No, it might have worked. Yeah, I feel like I'm done. I feel Do you feel tired sometimes, after reliving this through the conversation, like I'm exhausted by your

Robin 1:07:23
story. Yeah, I do. I feel tired, yeah, when I think back about it. But now we have things in place. There's just things in place. So the first ex husband, I don't have any contact with him, like at all, and he does reach out to his kids. Every once in a while, I would say he reaches out to his kids, like, maybe every two or three months, it's usually when him and her split up, or when they are together. It's very chat, GPT message type thing, like, you know, happy holidays, stuff, whatever

Scott Benner 1:07:51
it sounds like a an AI wrote the message that he sends. I got you. It's 100%

Robin 1:07:55
AI wrote, yeah. So we don't even deal with him at all. That's not even chaotic. We don't have any discussions with him whatsoever. And then on the other ones. So my second ex husband, we have been through court battle, through court battle, through court battle. We had a guardian ad litem. We're now on our family wizard. I had to get a parent coordinator. And I'm like, Look, I this. This is probably the most insane about that whole situation is that you told somebody they were sick and that they need to leave, and you're so mad, you're going to send them 50 messages a day, and had to have a court order put in place to stop this. That one's a whole nightmare all the time. Whole nightmare all the time. But, yeah, we do that every other week. He's only wanted to message me once. So there was a lot of exhaustion in the beginning with all of that, but now that we have these boundaries put in place, I feel like that there's less going on. I got a new job in the past year. The work life balance is amazing. Actually, they never bat an eye when I'm like, I have a kid thing. They're like, yeah, absolutely go ahead. We'll talk to you later if you need to reschedule something. They're like, absolutely this job right now is so fantastic that when I came here, I told them I was still doing payroll for my old job at the moment, while they were looking for they're like, do you want us to give you a couple hours so you can finish payroll this morning? And I was like, what?

Scott Benner 1:09:16
I'm not used to people being this nice to me, but thank you. That's correct. Yeah, it's really wonderful. I'm glad that your life turned around as much as it has. Like, it's nice to hear the end of a story that feels like celebratory and it's

Robin 1:09:29
very much like, this is the greatest thing that could have happened to my they want to throw me a party when I was officially taken off my pump, because they were like, your diabetes free, you know, and they wanted to throw a party. And so, like, this is probably the best thing that could have happened, because I have a partner that's extremely supportive. I can literally sit there, not crazy, and be like, I think I'm gonna die. And he's like, probably not, but let's go.

Scott Benner 1:09:52
Can I ask you when the transplant happens? Do those people talk about, like, is there any risk of failure? Like, could you wake up six months from now? Six. Years from now, and this doesn't work anymore,

Robin 1:10:01
they do, yeah, absolutely. So that is something that a lot of people do talk about, to be honest, because they say that you need, typically, two transplants in order to be completely insulin independent. I only had one, and they were like, wow. They were completely amazed that mine was even working on just one. And then there's some people that need to top up later on. They say they have a patient that's 10 years that was diabetes free, without having to do anything. And she just recently went in and got another islet cell transplant because hers was starting to not work. I mean, it's a life of an organ. Just like, if you get a heart transplant, you may go like, 20 years, you know, or you may go 10, it's a life of the organ,

Scott Benner 1:10:48
yeah? And I guess the cells even can get, I don't know what the word is like, do they

Robin 1:10:53
Yeah, they do say that they could get tired. They could burn out. They say that too.

Scott Benner 1:10:57
Okay, I just think it's important for people to hear like, it's amazing how it's worked for you. And I think it's, I think it's awesome. I love that the research is happening and that they're doing these things. But it's not magical. Like, I don't want people to feel like, you just, you go to the doctor and he's like, Okay, here's some cells, and you don't have diabetes anymore. There's a lot that goes into it. Yeah, right.

Robin 1:11:17
100% I don't ever want anyone to think this is like, an end all be all, this is some magical cure that you will never have to think about anything again, because there's still anxiety that lean. I still wear a Dexcom. I have not had any issues, but I still wear my Dexcom because I spent 18 years diabetic, and there's a lot of anxiety that surrounds that. And you know, what if it comes back? What if they fail? I still try to watch that. I watch my trends. I'm like, maybe, why am I higher this morning? What is happening? I don't ever think my first thought is never, I didn't get enough sleep or I ate something too high carb. My first thought is, always, are these cells burning out? Yeah, yeah, you know. So you'd have to live with that. Sure, it's not an end all deal. But what I will say about it is I would do it 1000 times over again, because it does lower your risk for death for sure, out of the diabetes.

Scott Benner 1:12:07
Yeah, you've said a number of times that it makes me feel like you are one of the people who's very concerned that, like, your blood sugar could just get really low and you'd shut off, and that would be the end of it. Yeah, that's a thing you've lived with for a long time,

Robin 1:12:19
yeah, and it's very scary, because I've had that happen. And like I said, my first ex husband was waking me up in my sleep realizing that you're you're low, you're low, and you have to do something that's very much a fear of mine and but it protects you. If you do go have the transplant, there's trade offs, of course, yeah, but I would do it 1000 times over again. There's a lot of trade offs with it. It's not this miracle cure by any means, but they're, they're getting there

Scott Benner 1:12:46
in your mind. If this fails, it fails and you just have diabetes again. It doesn't fail, and you don't have a horrible low blood sugar at four o'clock in the morning when nobody's

Robin 1:12:54
looking right. I just look at it like that. If it fails, then you have diabetes again. Because that is one of the primary things that I asked about this is what happened. I was more so concerned about when you get a pancreas transplant. I'm like, What happens if the pancreas fells? Because I thought they took out the organ, which they don't. I didn't know that initially, but they're like, well, then you're just diabetic again. And I was like, oh, okay, well, that makes more sense. But I just feel like the, I guess, long term, that it's protecting you from these other issues that you end up having as a diabetic, these risks that you run into, you know?

Scott Benner 1:13:28
Well, I really appreciate you sharing this with me. It's a unique story for certain and I love hearing that there's doctors like wickowski, yeah, Dr Wieckowski, yeah, at University of Chicago medicine. Is that, right?

Robin 1:13:41
Yep, University of Chicago medicine, wow, that's awesome. He's fantastic. He's fantastic with his patients and stuff, their level of care is amazing. I've never had level

Scott Benner 1:13:50
of care like that. At least you listen, it's exciting. Your GP knew a guy, and look where it led. He knew a guy.

Robin 1:13:56
I know a guy that didn't really know a guy. Yeah? I mean, I've

Scott Benner 1:13:59
heard of him. I saw it on internet. Let's give it a try. And then you're just, like, ability to sit down and just knock out an email real quick that says, hey, like, I'm up for this. And then you go through all that testing, and you're a good candidate. Like, a lot of good luck in there too, you

Robin 1:14:13
know? Yeah, absolutely, because they get applicants every day, right? I would imagine, yeah. So, I mean, it's just, I feel like it's more of a fate situation. I'm just like, wow, that it's impressive. It's impressive that this is the path that I went on. And sometimes I also look at this and I think maybe this is the blessing I get from dealing with those two ex husbands.

Scott Benner 1:14:33
You know, you said it differently, but what I was thinking was, I do feel like the universe owed you a win. That's for sure. You know for sure. Yeah, Robin, thank you so much for doing this. I can't thank you enough for coming on and telling this story and sharing this with everybody. It really is awesome. And I guess I'll, uh, I'll put Dr Wieckowski, his name in the in the show notes, so people can find it if they're interested in learning more about it. And maybe I will reach out to him and see if he's interested in coming. On and talking about his research and what he does,

Robin 1:15:02
I'd be happy to connect you guys. He was just on the news not too long ago.

Scott Benner 1:15:06
Would you that'd be great, yeah, do it, yeah. That'd be awesome. Okay, all right, send you guys an email. Awesome. Hold on one second for me. Okay, all right, thanks. Thank you.

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