#1968 Hide and Go Seek
Hide and Go Seek
Kristen is a pediatric nurse who gives Tzield for a living. Her own son was caught at stage two, got the infusion, and she talks about what it bought them — and what it costs.
Jump to a moment
- She works where kids arrive in DKA. Kristen is a pediatric emergency and charge nurse who has caught many children in DKA — and is now part of the only pediatric center in her state that infuses Tzield. When her own son showed signs, she describes his pediatrician telling her she was being insane.
- His early picture didn't look like typical type 1. Drenched sheets, dizziness, and then dangerous lows — at one point as low as 16 overnight, and drops of 200 points in twenty minutes. His doctor's working theory was dysglycemia with reactive hypoglycemia. He was confirmed at stage two, and started a Tzield infusion in August 2024.
- How they explained it to him. Kristen describes Tzield to her son as a fancy game of hide and go seek — hiding his beta cells from his immune system for a while, knowing that eventually they'd be found. He's since progressed, but she credits the delay with giving him a slower, less panicked way to come to understand type 1. Now approaching his own decisions, she says she'd want him to have it again but respects that it's his body.
- The price is a big part of the conversation. Scott looks up the list price live — roughly $15,000 per vial, with most patients needing a two-week course — and the two of them work through what that means if insurance covers it versus if you'd paid cash and six months later heard the CGM alarm. Kristen notes her center has given it to only a handful of kids in two years, partly because there is no broad population screening.
- The back half is about her own health. She describes stopping Mounjaro, then struggling to restart, and eventually learning she had a fibroid roughly the size of five pounds pressing on everything around it — which Scott notes lines up with his wife's recent experience. Tzield and cost figures here are one family's experience and one live lookup, not medical or financial advice.
- Diabetes Pro Tip series — Episodes 1000-1025 — settings, insulin timing, and food impact.
- Bold Beginnings series — Scott and Jenny Smith for newly diagnosed families.
- Juice Cruise 2027 — July 21–26, 2027, from Orlando — deposits open now.
Every word of the conversation
Cold open & sponsors0:02
Friends, we're all back together for another episode of the juice box podcast. Hey. 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. Hey.
If you're looking to come out with us on juice cruise twenty twenty seven, now's the time to head over to juiceboxpodcast.com/juicecruise, learn more, and probably get your deposit in. I'll tell you a little bit about it. I'm sorry I'm gonna be reading from the website a little bit, but still. The juice box podcast presents juice cruise number three. It's the third cruise with myself and a ton of listeners all getting together for a beautiful vacation.
We're also doing workshops. We have surprise guests talk about mindfulness, mental health. July 21 to the twenty sixth, leaving Orlando, Florida, heading out to Port De Plata, and a number of other stops including The Bahamas. Juiceboxpodcast.com/juicecruise. This episode of the podcast is sponsored by MiniMed and the Contour NextGen blood glucose meter.
MiniMed, of course, the innovators behind the MiniMed flex system, a small sleek and discreet insulin automated delivery system controlled from an app. Nothing comes close to freedom you can feel. To learn more, visit minimed.com/juicebox. There is one blood glucose meter in this house, the Contour next Gen blood glucose meter. That meter is on my daughter's person right now and at all times.
It is incredibly accurate and waiting for you at kontoornext.com/juicebox.
Hi. My name is Kristen. I'm a mother to a type one diabetic who actually got TZL'd. Today is actually two years exactly from the time that he started his TZL treatment, and he's still not in insulin, which is pretty cool. I'm a pediatric ER nurse as well as an infusion nurse.
A nurse who catches kids in DKA1:59
So throughout my times, I have caught a lot of kids in DKA in the ER. And then I now I'm in the infusion nurse that gives TZeal to other kids. So it's just been kind of an interesting journey. It's not something I think I ever would have thought about in nursing school, because diabetes made no sense to me. But now I have a type one diabetic.
So it
makes no sense to me.
I'm trying to decide if you're on a journey or a Ferris wheel. It's you might just you might be trapped in a little bubble that you're unaware of. Let let's start a little slow, pick things apart. So you have one child, obviously. Do you have more?
I have three children. So they, what we call like, most people call stair step children. So they're, thirty two months from start to finish. So, currently, they're 13, 11, and 10, because one just had a birthday. But the middle one is the one that is a type one diabetic.
Why do they call them stair steps? Because in the time it takes you to take a step, you're pregnant again? What is the
Well, yeah. I so for for most of the year, they're, like, like, they're, like, 12, 11, and 10. Right? So it's just, like, there's no skipping a stair.
So there's, like, one age after the
other after the other.
Okay. How old are you?
I'm 39.
39. Okay. You have these kids. Which one of the children, the middle, the oldest, the youngest has the type one?
The middle, the 11 year old.
Okay. How many how do I wanna ask this? I'm gonna start with autoimmune in your family. You, hypothyroidism, somebody got celiac, anything like that?
No. We actually have zero autoimmune in, either side of the family. When he got diagnosed, like, the only autoimmune, like, blood related autoimmune that could get traced back is, like would be his great grand like, uncle. Like, so it's his great grandpa's brother. Mhmm.
A great-great-uncle, maybe3:52
We think probably had type one because he died as a teenager, but, like, I mean, he's, like, you know, grand great grandpa's, like, 90. So
Yeah. We're talking about a while ago.
Yeah.
Yeah. Okay. Well, what about, your child's health first concerned you, and was your profession in any way valuable?
Oh, I do not think I would have caught his diabetes had I not been a nurse and had I not been, like, a pediatric ER nurse, in particular. So he, probably for a year before he was actually diagnosed so he was diagnosed officially 04/08/2024. But probably for a year prior, he would wake up, and he's not my complainer child. The other two children, I love them dearly, but I probably would have just been like, whatever you're complaining to miss school. But he was not the complainer, and he would be like, I'm dizzy.
And he would wake up, like, covered in sweat. His sheets were be soaked from being drenched in sweat and being dizzy. And I was like, what does that mean to you? Because he's eight at the time.
Yeah.
And was like, the room is spinning. And I was like, this is weird. So I actually thought he had low blood sugar, and so I bought an Accu Chek, like, to check him at home and was just randomly checking his blood sugar anytime he complained about being dizzy. But it was enough, like, in the morning that I was like, this is weird. He was never really fully nighttime trained because he has, like which he would, he would hate if I actually said his whole name.
Because, like, even before diabetes, like, I like, my husband and I were both late nighttime trainers. So I was like, you kids are screwed from us. We're sorry. It's bad genetics. But he would, like, go from being, like, almost completely dry in his, like, pull up overnight at eight to, like, stopping them again.
And I was like, this feels like diabetes. And I went to his pediatrician, and he was like, Kristen, you're insane. Just because you're a nurse does not mean this is happening. And I was like, it feels wrong. So they sent him to a cardiologist because he's dizzy.
“Kristen, you're insane”6:06
Right? And, like, he would get dizzy while working out. And so the cardiologist is like, nothing's wrong with his heart. And then he was like, you should see a neurologist. And so we saw the neurologist.
He was like, this is not neurology. I'm like, I think it's that he has diabetes. And the neurologist
Said, but wait. I have one more friend who has a boat. Can you just go can you just go talk to one more
Well, the he didn't send me to an endo either. Now granted, the neurologist is, like, February '24, and he was like, I think you're probably right. Just keep better track of it. And this is a neurologist that I worked with a lot, like, in the ER. So he knew who I was.
I knew who he was. And he was like, if your suspicion is this, just write it down better so that way you can track it more. And it was probably maybe a month later. It was, like, my kids' spring break. We sent them to my parents' house who live, like, four hours away, and my mom was is also a nurse.
So she was like, Kristen, I think you're right. And so he was complained one morning. He loves bacon and eggs. He'll eat bacon and eggs anytime of the day, and he didn't wanna eat it because his stomach hurt. So she checked his sugar, and his fasting glucose was, like, one seventy something.
She had already given him, like, you know, a good nana does, like, a bowl of sherbet. Right? Because, you know, your belly hurts. Here's some sherbet. That's how, you know, I grew up as a kid.
Your stomach hurts. Just eat some ice cream.
My gram my grandmother would give me ginger ale.
Right? Like Yeah. But she checked his sugar then after that, and it was well over 400. And now she's like, I'm gonna take him to this children's hospital. And I was like, no.
You're not. I was the charge nurse at the time in our ER, so I literally get the phone call from my mom. And I was like, if he's not Kussmaul breathing, please do not make me jump through the hoops of transferring his cares from two states away, like, over here. I was like, it's such a hassle. Like, just drive him back and bring him to me at work.
How far away? What kind of a ride?
It's, four and a half hours. I think my dad made it in, like, three. How old how
old are your parents?
Oh, no. Now there's see, my dad just turned 72. So my mom's 67.
So they were they were just about 70, late sixties. Yeah. Driving Yeah. Like, about out of health two states away.
Right. So, like like, I live in Indiana. They live in the Met say, like, the Met Illinois side of Saint Louis. So Okay. It's just like Flat and far.
Flat and far? Yeah.
Yeah. It's top on one interstate and just book it.
Yeah. Yeah. You guys should get a hill. It might be it might be awesome. It's fun.
Yeah. So, okay. So, obviously, he made it okay. And because you're telling that story in a lighthearted way. And and so he gets to you.
You put him in through your health care system. Is that hard?
I mean, it was hard. Like, I had to call like, because, I mean, literally, I was I was I was the charge nurse that day of our and I work in a, like, a level one pediatric trauma center. And so I was like, I am now, like, not capable of being level headed to, like, make all the decisions that a charge nurse does. So I like, the charge nurse of a trauma center is the one that, like, this ambulance is coming in. They can go to this room or they can go to this room or we have because kids are I wish kids and guns didn't exist, but that's a whole other thing.
Charge nurse at a trauma center9:38
But they both do?
But they both do, and guns and people aren't safe with guns. Like, I people can own their guns if they want. I just want people to be safe. Like, the amount of shootings I've seen of children is really bad
Yeah.
Which is it's just part of what I've dealt with for work. So I was like, I cannot make these decisions. So I had to call my my manager and was like, I need you to replace me because my son's coming in and he may be in DKA. And he was like, got it. I will come in and replace you.
And I was like, thanks.
Yeah. No kidding. Also, test my knowledge on this from interviewing other people. Every day, some small kid comes in whacked out on weed that they find and eat. Right?
Like gummies? The Kontoor Next Gen blood glucose meter is sponsoring this episode of the juice box podcast. And it is entirely possible that it is less expensive in cash than you are paying right now for your meter through your insurance company. That's right. If you go to my link, contournext.com/juicebox, you're gonna find links to Walmart, Amazon, Walgreens, CVS, Rite Aid, Kroger, Meijer.
You could be paying more right now through your insurance for your test strips and meter than you would pay through my link for the Contour Next Gen and Contour Next Test strips in cash. What am I saying? My link may be cheaper out of your pocket than you are paying right now even with your insurance. And I don't know which meter you have on you right now. I can't say that.
But what I can say for sure is that the Kontoor Next Gen meter is accurate. It is reliable, and it is the meter that we've been using for years. Kontoornext.com/juicebox. And if you already have a contour meter and you're buying test strips, doing so through my link will help support the podcast. Let's be honest.
Most of us would love to spend less time thinking about diabetes. That's exactly what MiniMed had in mind with the new MiniMed Flex system. It's small and sleek. You can control it from an app, and it uses the trusted smart guard technology that automatically adjusts insulin every five minutes. Less juggling, less micromanaging, more freedom.
That's the MiniMed Flex system available now at minimed.com/juicebox. There are links in the show notes and links at juiceboxpodcast.com to Contour, MiniMed, and all the sponsors. When you click on my links, you're supporting the podcast and helping to keep it free and plentiful.
Oh my goodness. The amount of yeah.
Yeah. High little kids that show up from gummies. Right? Because they find their parents' stash somewhere or something?
Or it's like grandmas or aunts or whatever. And, like, I say this in the the most loving way possible that, like, I don't care what you do. Just kids think it looks like candy, so they're gonna eat it. So just be a little like, either have a conversation. Hey.
This is adult candy. Don't touch it or, like, hide it better.
And people lock up your weed. I mean, it's not hard. I I every time I interview somebody with your job, they're like, every day. Happens every day. And it's not it's not a laughing matter in some cases.
It's incredibly serious. They if they get too much. Yeah.
And some of those, like and buy from reparable people. Like, you know, even if they're sketchy reparable people, like like, you don't know what your drugs are laced with. The amount of, like, kids that have come in that have accidentally, like, gotten fentanyl, like, mixed in whatever, like, party drug they were going to do and nearly died is
It's astonishing, isn't it, how often it happens. Yeah. Yeah.
Yeah.
Yeah. Okay. I'm sorry about that. Just weird left turn. It just it always pops into my head.
Like, I I don't know. Like, just it can't be hard to put your gummies somewhere where a kid can't get them. It can't be. I mean And just
talk to them. Be like, don't touch mommy's candy.
Yeah. Mommy's got a lot of stress. Okay? So don't touch this. Dad's a lot.
You understand? I need one of these at the nighttime so I can sleep.
Yeah. Like, every day.
Yeah. Every day. Yeah. Okay. So he gets there not in DK in DK?
How did it go?
No. So he's not in DK, and this is in March '24. And so the doctor that actually, took care of him is obviously worked with her, but she was also a type one diabetic. She was diagnosed as an adult in med school
Oh.
Which is a fun story in of itself. So she was the one that took care of him. So I think because I had like, I was a nurse. I worked with these doctors. They knew that it, like and, like, when he got there, like, it had been four hours.
So sugar was still, like, 200 something, so it was coming down. Non DKA, they gave him a bolus. It came back down to normal. But I because I think of, like, having worked with these people, they called endocrinology, and they were like, what tests should we run to make this easier for you and them? And so they ran all the antibody testing.
Antibody testing in the ER14:33
Oh, very nice.
At the time, that wasn't something that they did for, like, an unexplained hyperglycemia. It is something that they, a lot of our doctors now do because of my son. And they can't explain, like, if you're not having a stress response or you've been on steroids, like, they are now trying to run, those antibody testing in the ER because, honestly, insurance companies fight less when it comes to, like, ER things versus, like, doctor things. So Yeah. They just approve it, and so it's easier for families.
So what started out as, like, a little benny for you at work turned into a thing where they said, why aren't we not just doing this for everybody?
Right. So, like, our doctors now are like, well, obviously, we caught his early. And so they've done it a few times to catch a few other kids that they have suspicion or, like, in stage two like, stage one or stage two.
Yeah. That's awesome.
Yeah. They've done it a few times to catch kids.
Oh, very cool. I I that that's up I I find that, uplifting and hopeful to hear. So, when so because I'm assuming because you caught it so early, he does he need insulin in that moment?
No. So he didn't need insulin.
Okay.
And so then we just went home, and they're like, set us up with a follow-up for an endocrinology, which is, like, actually only six weeks away, which I love our health care system, but, like, pediatric health care when you need to see specialists, sometimes you wait six to nine months to see them. So six weeks, I was like, yay. Six weeks.
Insane.
Which is just there's just not enough pediatric specialist, honestly. So
It's a shortage problem. A shortage of doctors?
Yeah. Okay. And if you think about it, like, for here in Indiana, pretty we have actually two children's hospital, but in general, pretty much everybody comes to the hospital that I work for, to, like, see their specialist. And so if you have kids from multiple states coming in, then it just takes a long time because there's so many patients and there's only so much time in the day and there's only so many doctors.
Okay. Well, it's still six weeks is a long time. Did that worry you that it was gonna be that far away?
It was not my favorite thing, but also, like, I'm I'm a nurse. Right? So, like, I know a lot of the symptoms. I know how to care for things. And so it in in my head, I'm like, he's not dying currently, so we're okay.
Right? So, like, when he was, like, way younger, Scott, he also had epilepsy. And so I had to give him, like, CPR. Like, I had to rescue breathe for him in our yard
Jesus.
When he was, like, two and call 911. So, like, I whenever I think about things, I'm like, I'm not doing that. Right? So, like, anything else in comparison is he's okay.
You have a little bit of parenting perspective around health already because that why the hell did you have a third kid when that happened? That would've stopped me right there. I would've been like, hey. She was good.
She was already born.
Oh oh, you so you're giving CPR to one kid while the baby's laying next to you in the grass?
Well, so, like, my oh, it's a mess. All three of my kid we're a whole fun genetic thing. All three of my kids had epilepsy when they were younger. My youngest is my daughter. She still has it.
Okay. My but two thirds of kids will outgrow it. So my two older, my boys, outgrew their epilepsy. So yeah. But he's he was two at the time.
So I had, like, a 3.5 year old and, like, a, what, one year old at the time. So, like, I had put them all in the, like, car seats because there's three of them. So I, like, buckled them all in the car, and then I went inside to, like, grab, you know, like, lunch boxes because we were gonna go do, like, a parents' day out thing where I dropped two kids off for, like, an hour, and I have, like, some sanity as a mom when I was had three kids that close together.
But instead?
But instead, I come back out, and my three and a, like, 3.5 year old is he's just screaming that his brother can't hear him. The worst experience ever because, like, there's a particular look of, like, color skin when people aren't circulating blood well. It's very pale and, like, translucent.
Mhmm.
And at the time, I wasn't a nurse, but, like, I knew that, like, I knew that color skin, and I was like, oh, this is not good. So I came back out and he's, like, seizing, and he's just, like, Casper the ghost. And I was like I had to pull him out of the car and call 911.
Your husband home?
No. When you Of course not. He was at work. The next
time you saw him, did you go, we should have just got, like, a parrot or something? Like, what were we thinking? I don't
I mean, we didn't have any other kids after that. Like Oh, no. Yeah. For sure. Was diagnosed, we were already pregnant with my third, and I was like, we shouldn't have more kids.
Like, we're just we're done.
I don't know if you realize that that the universe is trying to tell us something. Our kids shake. They stop breathing. This one has diabetes. I feel like maybe we should go back in time and not meet each other.
Just, like, I sorta I said to my sometimes I just apologize to my wife. I'm like, I'm sorry I found you attractive all those years ago. I apologize, for what happened afterwards. Well,
I mean, I I'm a firm believer that, like, you're given the kids that you're given because you can handle it. Like, I think of, like, other people that I know, and I'm like, they could not have handled my life, and the kids would like, my kids would not have probably survived as well with them.
I don't know how to tell you this, Kristen, but some of those people get those kids anyway. So
I know they do.
100% I see. They end up in the ER whacked out on gummies. So
Right.
Those people couldn't handle putting the gummies away, let alone the other stuff. Okay. Oh, my gosh. I'm so sorry for you. That's a lot to go through, especially as a young mom and having just given birth too and everything.
She's, like
I mean, mean, it is what it is. Like, nobody and nobody died. Right?
That was
the close of, like, someone trying to die, but no one died.
Not today, Satan. Yeah. So okay. Sorry. At what point does somebody introduce the idea of TZeal to you?
So we actually then we had March, and then we got admitted in April. So this is, like, March 22 was, like, our first, like, visit to the ER. And then April 8, he we actually got a new puppy, and this puppy is not trained, but the heaven sent of this dog. We had gotten a new puppy, and we had let the dog sleep with him at night, like, just to snuggle because he wanted to read the the new dog. And he brings the dog back out, and she's like, she's biting me.
Cake icing in his gums21:28
And, like, because he had fallen asleep, so she bit him awake. And I'm not even kidding you, Scott. Like, he handed me the dog. He starts walking back, and he turns around. He goes, mom, I don't and, like, very slurred, slowed speech, not okay.
And so I checked his sugar, and he was 16. Like, that, like, that's not a compatible blood sugar for
Being alive?
Your break.
Yeah. Yeah. Yeah.
And I was like and so I yelled at my husband. We're, like, rubbing cake icing into his gums because he's he is out of it. Mhmm.
The kids are trying to die again. Right. I mean,
this kid has this kid's got, like, you know, nine lives. Okay? Yeah. He's used a few of them up. We live like, we have a hospital that's much closer to us than the hospital I work at.
It's, like, five minutes. And so my husband's like, should we call 911? I was like, I am faster than going through dispatch. But that was like, I don't recommend that for anybody else. It was one of those moments that I was like, I should have just called 911.
Like, even as an ER nurse, but I'm a little proud. And I was like, I am not calling 911 for my kid.
To drive them five minutes from our house. I can get there.
I mean, they would have taken him to my work, but, like, we show like, I show up into the, like, ambulance bay of this other hospital, and they're like, you can't park here. And I was like, his blood sugar's 16. And so they take him, and then I park the car, and I walk inside.
Listen. Wait. But he's not on insulin at that point.
No. He's still not.
He's still not on insulin. But boom, he's 60. This I listen. 16, obviously, very low. But the the number of people who tell me about having, like, in the run up to their diagnosis, very low blood sugars.
So a lot of people bring it up actually. And and you weren't having luck getting it up at home with what you were trying?
Well, I mean, I just doused him with cake icing and took him.
Oh, you didn't wait.
That's not a like, knowing what I know as a nurse, like, if you have, like, your your liver should have, like, given, like, changed stuff into glucagon and given you some glucose, you know, and, like, brought your sugar up. So the fact that he got to 16, I was like, that is grotesquely not appropriate with life, really. And so I was like, I need I need more blood work. Like and we got the little the hospital was like, well, you could you're a nurse. You could probably go home and take care of him.
And I was like, can you just admit us to the children's hospital? And they're like, why? And I was like, because I can't do this It's it's anymore.
I'm I'm done. I like, you don't you don't want me to drive these kids into a lake, do you? Why don't you just, like, let us come sit for an hour? I I I have insurance. Leave me in.
Let me in. Yeah. Also, yeah, like, what are we doing here? That's a big thing to have happened. Yeah.
Yeah. Okay. So do you get answers?
So they worked him up for what's essentially Addison's disease or did a controlled, like, glucose test and which is a miserable, terrible test, and it was fine. And so or, actually, they didn't do it correctly the first time, but it's where he has to fast. And then if his they check his blood sugar every hour. And if it's below 50, then they check it every fifteen minutes. And until you get below, like, a certain number, and then they do, like, 20 vials of blood to, like, test your body's response.
Because they're like, why did this kid get to 16? Yeah. But they didn't quite do it right, and so we just got sent home because it was the day of the solar eclipse in 2024, and I really didn't wanna be in the hospital for it. So we went home.
Did you think, oh my god. Every moron in the world is gonna show up at this hospital today. I gotta get out of here.
Right. Well, like and where we lived, we were, like, relatively close to totality, and I was like, I just wanna go home at this point. We've been here for three days. My kid hasn't eaten for, like, thirty eight hours. Like, this is miserable.
Did you ever get an answer about the low blood sugar?
Dysglycemia, and a 16 overnight25:36
No. Well, the answer eventually was that this is what they've theorized has happened is that it's dysglycemia, right, which typically means that you're high, but it also could mean that you're low. And so we ended up going back two weeks later because he dropped deck down into the thirties at night, and the lovely new puppy bit him awake again. So she's she's a little mini dachshund, and I'm like, if I could train you, I bet you you'd be a great diabetes dog because she licks or bites him when he's high or low without any training, and I love that dog so much for it.
It's interesting, isn't it? Well, something who cares why? I'll take it.
Right? I was like, but if she hadn't been awake that night, like, he had already gone to bed with a blood sugar of 16. I don't know if he would have woken up, to be honest, which I don't like to think about that too much because your body has all these reserves and systems to help you and especially not being on insulin. Like, his body should do those things, but his body also shouldn't have gotten to 16. So what they his doctor thinks is that he has what's called reactive hypoglycemia.
So he was going high, and then he crashes. And you could see that he got a CGM at the end of April twenty twenty four. That's when we got, like, a more urgent follow-up. So we, like, actually met with all the endocrinologists. His doctor came to see him in the hospital, and she's like, we are gonna do more antibody testing because if you wanna do TZeal, like, insurance company likes two antibody testing.
So that's when we learned a lot more about TZeal, and we got his CGM. And then my child got a cell phone even though I didn't want him to have a cell phone. But
You you got freak you got it freaked you out pretty good that that low blood sugar.
I mean,
I It would have made him.
That he could be that low overnight and knowing what I know, I was like, this is not gonna end well for me. So
Yeah. What did did did you think to get him a CGM at that point?
Yeah. So he got released from the second hospital stay with the CGM.
Mhmm. And was that what did it teach you? Was he getting low a lot after that?
So he would go like, especially after eating, he would actually go high. He'd go up to, like, two fifty to two eighty almost every meal, and then he would plummet. But he, like, rapidly dropped. So his CGM, like, it would be he could drop 200 points in twenty minutes with, like it's like he we joke and we're like, he has a lazy pancreas.
It's like two eighty back to 80 in no time at all.
Yeah. And so it was like, I don't wanna work. I don't wanna work. I don't wanna work. Oh, I should get up and work.
You know? And then it, like Flips humbled him with, yeah, insulin, and he just tanked. And so then he would go really low, and then he would come back up. But it was terrifying. So he had, like, really, like, harsh, like, a roller coaster seat, you know, drops on his CGM after eating.
Sorry. I was taking a pill. Could he, sorry, could he feel that?
No. Which is even worse. Like, he is very unaware unless he's, like now he's more aware, like but it's he's under 40 before he's aware, or he's dropped probably a 100 points in ten minutes. Like, he's learned over the last two years. But at the time, he had literally no idea.
And we would have no idea because he would act just fine until he was, like, under 30, and then he would not act fine.
Jeez. And is this the point when somebody says TZL to you?
Yeah. This is when his doctor, like, that second time was like, hey. Like, I think, like, he's he's stage two type one diabetic. Like, he's obviously having dysglycemia. At the time, we had gotten his initial antibody testing from back in March because it takes, you know, what, three weeks or whatever for them to come back, and he was positive for GAD and zinc transporter
Mhmm.
At the time. And so she's like, she explained to me, she's like, he is a type one diabetic. And I was like, what do you mean stages? Right? And, like, I'm a nurse.
And I was like, I don't know what you're talking about, lady. Like, what what stages are you talking about? And so which sometimes in health care, people talk to, like, other health care people. Like, we know what we should all know, but we really don't.
They talk to us. They talk to us that way too.
I'm like, talk to me like I'm five. You know? Like, sometimes when I'm in chat GPT, I'm like, can you explain something to me like I'm a five year old? Because I need it broken down very simply.
Well Health care people frequently tell me health care people. That's not the right wording. But people in health care frequently tell me that when their kids or they or they are diagnosed, that they feel like they got the bums rush because the person talking to them was like, well, you get it, and then just let them go.
Yeah. Pretty much.
Yeah. Even though the I've been told that the people saying, well, you get it, oftentimes, they get the vibe they didn't get it either. They were just like, well, I don't understand, but maybe you will. So good luck. You know?
It's I I understand the how that could possibly happen. So when they say TZLD, you have no context for it. Do you look it up? Do you have questions?
Not a clue. And so I actually looked it up, and it was ironic because there was another kid, like, the hospital I was at, like, on their, like, social media post was like, hey. This kid had gotten TZealed, it's been, like, six like, as part of a research trial, and it's been six months or a year, however long it was since he had gotten it, and they had made a whole post about it. So I was like, that's ironic that, like so I got to read it. I, like, Facebook stalked the mom and was like, hey.
Seeing another kid's post about Tzield31:39
And, like, asked her questions, and she was lovely person. I answered all of the questions because I was like, what did this do? What does this look like? Like, so very lovely person to be like, hey. My like, I saw your son's post on our, like, hospital page, and my son's potentially getting TZL, and she's just, like, literally called me up and answered all my questions, which is great.
Yeah. So how long ago was this now that you did the TZLed?
He got it literally his first day of his TZLed infusion was 08/05/2024. So it's been exactly two years.
Did you book this day on purpose?
No. I did not.
Isn't that
crazy? You actually changed this to to this day. It was gonna be a different day.
Did I? Oh, that's right. Because oh, be I moved this up because I put you on a travel day, and I didn't realize you don't know that, but that's why I had to move you. I'm I'm I'm going to ADCS tomorrow. And so That's fun.
Oh, so I moved this this day. It's what they call, kismet. Is there a word that goes around this? I don't know exactly. And does he take insulin today?
No. Get out of here. Isn't that cool?
I will say I and he hate he doesn't like me. I think he's getting to the point where he needs to, but also the last two weeks have been very stressful. Stressful. And so, like, when he's been eating, it's been going high. He started school today, but it's at a they they've always gone to private school, and he is going to public middle school.
So not only is he moving schools, but it's starting middle school. And so I think his, like, stress response is higher.
Yeah.
And he's been eating, like, bags of Goldfish. And I was like, can you please stop eating, you know, half a carton of Goldfish because your sugar's two sixty, child.
So he wears a CGM all the time?
He does.
Okay. And he knows he has type one diabetes, and he expects that it will come, you know, and need insulin at some point. Is that how you've explained it to him?
Yeah. I was I've told him. I was like, look. Like, you will 100% need insulin at some point. We explained TZL to him like it's kinda like a big fancy game of hide and go seek where we hid his immune like, his beta cells from his immune system for a while, but eventually, you're found.
Hide and go seek, explained to a kid33:51
Okay. Does now having done this for two years now, aside of whatever health benefits you're gonna get from not having diabetes for two years, psychologically, would it have been better for him to just get diabetes two years ago or no?
I don't know. I it's it's kind of like a hard hard thing. Right? Like, because he's now 11, you know, going on almost 12. So, like, his maturity level is much higher.
Right? And his ability to, like, take care of himself is higher. I don't he doesn't like to be the kid that, like, stands out or draws attention to himself. And so I think he's enjoyed not having to, like, be on a pump or be on insulin. He is needle phobic.
Like, of my three children, he's the only one that cares about getting stuck. And so I'm like, why is my needle phobic child the one with diabetes? So I don't for him, it's not the insulin. It's the having to poke himself. So I think it's been nice for him over two years.
It's like he wears the CGM, but, occasionally, we we finger correct to, like, verify because sometimes we use a Dexcom and sometimes it's wildly inaccurate. He's also a competitive swimmer. So, like, especially after he's been in the cold water, it's not particularly accurate.
Okay.
And so he's learned to be like, this is just one part of diabetes. And so I think he's now comfortable with that. And so now it'll be I think it's given him time to, like, get comfortable with one part and then get comfortable with another part. But, like It's nice
so that's a nice way to think about it that it's been just a slower, amount like, a longer time for him to accept what's going on to understand it and not put him in, like, a medically, like, panicky situation while he's trying to figure it out.
Right.
It'll be interesting to see if your experience once he starts needing insulin still just ends up mimicking a newly diagnosed person or if their value actually carries over or not. It's interesting.
Yeah.
Yeah. Jeez. I'm sorry. I I know the whole thing sucks, like, one way or the other. Like, it's nice to talk about, like, oh, he took the drug, it kept his diabetes away for a couple years, and that's awesome.
But still, the whole process is terrible. What about the
I mean
Go ahead.
I I mean, I just wish there we gave it to him in the hopes that, like, one, I know the benefits of, like, having better blood control, you know, for his sugar is, like, long term. Obviously, health insurance companies have recognized that benefit because TZeal was not cheap
No. At all. Yeah.
Yeah. So the fact that they, like, covered it is kind of insane still to me, but it's just like, it it sucks. Right? Like, it's just it's trying to buy time. So now tZeal's been approved for, like, you know, newly diagnosed stage three.
Whether he'd do it again37:00
We actually had that conversation with his doctor, and we're like, does that mean that he can get it again? At the time he got it, it was a onetime dose, and she's been looking into whether or not he can get it again because would it be considered him newly diagnosed as stage three, and could he get it at the eight weeks and the six months and preserve more of his beta cells? So that's an interesting but there's so few, I feel like, stage two kids that got TZL that there's not a lot of, like, data about what you whether it's beneficial to get it again or not.
Okay. That's not just an an an insurance thing?
I think it probably honestly, Scott, it's probably gonna be an insurance thing, but I that's like you know, it was what? Approved a month ago, right, for stage three
Mhmm.
Or two months ago. So, like, it's just a recent theme. So it's like, can he get it? You know? Like, because he's still not on insulin, which or is he like, well, how is he going to be classified when he needs to be on insulin?
He'll move to stage three. Right? But for insurance purposes, does that make him eligible for TZILD? And the answer is his doctor and I have no idea.
Yeah. Are they looking into it?
He she is. Yeah.
What what's your inclination? What would you like to do if money isn't the issue?
Oh, I mean, insurance covers it. I think on his I would like for him to have it again because I saw such a benefit, but he's also at the age where it's kind of his body and he knows the risk and benefits to it. He had we learned he was allergic to adhesives during it with his PICC line. So he had, like, really bad blistering rash around his PICC line, and he got pretty GI upset. So he was, like, sick for, like, a week.
So I don't know if he would want to do it again, and then I respect him enough to let him make his choices on that.
Hey. GI, impact from the adhesive allergy or from the TZ?
From the TZ.
Oh, poopy? Like, the
Well, yeah. So day four, days one through five, you this is my knowledge as an infusion nurse giving it. Days one through five, you they're increasing the the medicine, like, the actual, like, dosage of TZeal. Day five is when you're at your max dose of TZeal. But they, like, slowly introduce you, because it can cause allergic reactions, so they introduce it to your body more slowly and build it up.
So on day four, he got he was, like, so sick. He just essentially lived in the bathtub, and it was coming out both directions, and he was miserable for days.
Oh gosh. Hey. Did they do the Benadryl thing like they do with the iron infusions?
Yeah. So he got, Benadryl. He eventually got he gets a bolus. So a lot of the times kids will get Tylenol or ibuprofen, depends on which doctor writes it, and Benadryl. And then they'll get a bolus of fluids like normal saline before the TZOELD.
And that bolus of fluids goes over thirty minutes to an hour. And then t zealed goes over thirty minutes to an hour depending on who writes it and what the kid's weight is, and then you get observed for an hour afterwards.
How much how much total time are you there?
It's, like, four hours. Every
How many days in a row?
Fourteen.
Is there not a longer there's a fourteen day. Is there also a longer infusion time too, or am I making that up?
It's fourteen days, I for stage two, and then I think the ones for stage three are actually only gonna be twelve days.
Twelve days. Okay. Shorter, though. Yeah. So and so now to kinda put your, like, professional hat on for a second, like, forget he's your kid for half a second.
Is it is it worth it? Like, is it is that a lot to go through for a person, or is it a small thing to trade for, you know, what you've been hopefully benefit on the other side?
I mean, he's seen a lot of benefit from it. Right? And so there's a lot of things in health care like this, I feel like, gives hope. Like, it gives time. Right?
So, like, we know it's still going to happen, but it gives hope of, like, what am I buying for this time? Obviously, when blood sugar is higher, like, all those small vessels, like your fingers and your toes and your eyes and your kidneys, like, those capillary vessels get damaged more by high blood sugar running around. And so the longer you can have better control over your diabetes, the better. I did a lot of research into TZL prior to, like, giving it to my kid because I was like, what do you mean I'm gonna give him this biologic? And it's gonna, like, alter him in some way.
You know? Like Yeah. I was like, I'm like, that that feels a little weird.
We're not getting Spider Man. I'm not sure what I'm what I'm doing here.
Right? I'm like and it's, like, it's just interesting. So it's a it's it's a zippo map. So all of the maps, if I can I'm I'm pretty sure if I if I get this wrong, my coworkers are gonna give me a hard time, are, like, 90%, like, human and, like, part mouse. I'm almost positive that is correct.
And so it's, like, how it's made is very different, and that's why sometimes people have reactions to it.
Yeah. I always said temazeplav. It's temazo what?
Mab.
Temazepam? Yeah. Okay. And that was the drug name back when they were still were back when Provention Bio had it, and they were they were still bringing it to market. I actually spoke to a person the other day that I know who worked at Provention Bio.
And, it's been a lot of years since I had conversations with them about, oh, we're making this drug, and it's gonna do this. And now, like, look where it is. You know? But it's a it's a lot of years ago already that that from those conversations to this. Do you think did you think when you did this like, I know they I don't know what they tell you.
They tell you we're not sure if it's gonna work or how long it's gonna work if it does. Is that kinda how they put it?
She said, she's like, we've had kids where they've gotten in, and it's only worked for six months. But she's like, in general, it lasts about two years. Some people in the research trial, it's lasted ten years. She's like, we have no way of knowing who who benefits, you know, for what time frame.
What was there any part of you that was like, oh, we're gonna get the ten years?
Oh, I mean, it's, like, secretly hope. Right? Where I'm like every time I'm like I'm like, are we gonna make it? You know? And so, like, when we made it a year, I was like, we made it a year.
You know?
Mhmm. So where
Now I'm like, we've made it two years.
Right. And two years is awesome. But, like, where are you now that you're seeing, like, higher blood sugars? You're like, oh, it's like is it disappointing, or do you feel good about the decision?
I still feel good about the decision. Like, I just pulled up his Dexcom. So, like, he had, lunch at, like, 12:30, so, like, an hour ish ago. Yeah. And he's, like, one forty four.
No. That's awesome.
So, like, it's where I'm like, now if he eats he loves chips and salsa. And so he eats a bunch of chips and salsa. It's never I'm like, you're and he feels sick afterwards, and I'm like, you're eventually gonna have to take insulin. He's like, I don't want it. And I'm like, so, like, sometimes I'm I get, I think, cautious of, like, he's selective of what dietary things that he does because he doesn't want his blood sugar getting getting high.
Mhmm. And I'm like, I don't need you to have, like, an eating disorder because you're, like, avoiding food Yeah. To not raise your blood sugar. And, like, you you're a kid. You should be allowed to have pizza and cake and Somebody chips and salsa if you want it.
Yeah. Somebody pointed out to me recently By virtue of having type one diabetes, you have some sort of disordered eating. Like, it is a weird relationship with food no matter what. But I take your point. And and so you'd like him not to eat chips and salsa, but you don't wanna tell him not to.
But he's also if you say to him, well, we'll take insulin, he's gonna say what any kid would say. Well, like, no. Don't wanna do that. And then, you know, jeez. I see, it feels like a quagmire to me.
The whole thing feels like I don't know. Feels like a relationship where I'm I'm getting good news and bad news at the same time all the time. Am I wrong about that?
No. I mean, it's it's both. Right? Like, it's always it's the up and downs with any sort of, I think, chronic illness is, like, sometimes it's fine and sometimes it's not. Right?
And so, like, when it's fine, you're like, oh, we're good, and then it's not. And you're like, oh, this sucks. Yeah. You know?
Okay. I I appreciate that. What I don't know. How many people have you given it to that obviously, you didn't give it to your kid, but, like, how frequently are you giving it to people?
So well, now we're gonna give it to people more because it got approved for stage three. So, right, like, most kids aren't caught in stage two. My son never probably would have been caught had I didn't have the, like, nursing knowledge and just that gut instinct of, like, this doesn't feel right. So the problem is, like, we there there's not good, like, general population screening. Right?
Like, my my son, his name's Kaden. He doesn't he has no like, we have no family history. There's no reason for him to have been screened. Right? And so it just he's just that one outlier of, like, he doesn't have like, there is no history.
There's no reason to suspect that any of us would have had an autoimmune disease, let alone type one. And so to catch it is, I think, rare. I've given it to see, he was kid five. I think we gave it to kid nine last month. I'm currently out on disability from work.
So, I had surgery myself. So they gave it to a kid while I've been out.
Okay.
But, you know, so, like, you're talking in a span of two years, they've only given it to, like, four more kids. Now I do know that there are more kids that are getting approved for it that are in stage three. And so there there's, like, two or three kids in that boat that are going to get it pretty quickly.
So if if your son got this and it only lasted for six months, would you say it was worth it? Trying to figure out what the time cutoff is before you go, ugh, we shouldn't have done that.
Like, I think it will depend on, I think, on families. Right? So, like, for me, it's it wasn't a big burden to go to essentially my workplace. Right? Yeah.
Whereas we're the only pediatric center in the state that can give it. So some kids have gotten approved for home infusions, but I like, insurance companies don't really like that. So if you had to drive three hours, like, every, you know, each day and stay in a hotel, like, would that have been worth it? Maybe not because that's a huge inconvenience on the family. Right?
Like, some parent has to take that burden for two whole weeks.
Yeah.
For us, we could drive fifteen minutes to the infusion center, get his med, and come home.
Go to mommy go to mommy's work and do it.
Right. Yeah. I was able to not be at work, you know, during those times because they're like, nope. That's reasonable. Like, I took FMLA.
Yeah. No. For sure. I mean, that's a it's a it's a long it's a long day and so many days in a row. Obviously, he needs you to be with him.
Okay. No. I'm just trying to I don't know. Like, it's one of those things. Like, it makes sense if it works.
What it would cost to pay cash49:19
If it doesn't work, so I could see myself looking up and going, like, imagine if you paid cash for it. What was the cash price?
So much money, Scott. My insurance company paid the adjusted rate. Right? Mhmm. Insurance adjusted rate for all of it, including the PICC line, was, $478,000.
That was the that was the cheap price that they gave the insurance company.
Yeah. That was that was what my insurance actually paid the hospital.
I wonder what the bill was. Like, what it would have been if the if they if you said I'm gonna buy this cash, you think it
would I don't I don't even wanna know. It's so much money. I remember you said complaining about, like, way long ago, Tamiflu was, like, $70 to have it compounded when my kids were little and they couldn't take pills.
Yeah.
And I was like, that's a lot of money for medicine. And now that I've been a medical parent I mean, for epilepsy for a long time, it's been over a decade, like, of being a medical parent for different disease and two ish years for this. Like, I'm like, this isn't like, $70 is nothing.
So, I'd like to go back to the world where I was complaining about $70, please.
Right?
Yeah. Yeah. I I'm gonna see if I can find out what is the cash price for tZeal. See if we can find out. I mean, if it's if it's a 500,000 on the the knockdown price, I mean, is it is it a million?
I mean, I don't know. But you also, like this I love insurance companies. I hate insurance companies. When you use insurance, like, I think you know, like, my insurance will, like, has this adjusted rate at my hospital, but might have this adjusted rate somewhere else. Right?
So, like
Yeah. But still, like, it's a negotiated price. That's the only infusion center that does it in your state. If you had to go there for cash, that's where you'd go. And and they're not gonna give you the adjusted price.
So and if you can't pay, they're not doing it. That's for sure.
I know.
Yeah. Yeah.
It's so much money. It's more than my house.
Yeah. I I'm just saying, like, imagine you did that, and then six months later, you woke up and you heard, like, beep beep. And you see Jim, you'd be like, hey. What the hell?
I'm sorry. They're like, I paid a house for this. No.
I traded a house for six months. I don't know. It's just to me like, look. I hope it I hope it they learn more and it stretches time out, and I my expectation is, hopefully, that'll happen. But, you know, it's just a it just seems like it's a lot it's a heavy lift.
I guess the
heavy lift.
Yeah.
Yeah. And I mean and we got we've gotten two years out of it. Right? So, like, that it's been two years of no insulin. He wears a CGM still.
We all we've kept one on since TZeal partially because I like research. And so he his doctor and the fellow that saw him wrote a whole research paper on him. That's like a published journal article now. But, like, it's I think what doctors have always theorized has happened, and so he kinda is, like, that proof of it. And it's also proof of, like, how does TZLD actually, like, affect this per one particular kid's blood sugar.
Mhmm.
He didn't have to wear CGM, but he would have to be, like, you know, before and after meals, like, two or three times a week. And he was like, I don't wanna get stuck that much, so he would rather one CGM stick every ten days.
Yeah. Well, listen. It it's they must have a sale here because, the Internet says that Sanofi's official website list price effective July 2026 is a mere $15,218.05 per vial. So 14 vials would cost $21,352.70.
$15,000 a vial53:13
Is it just one vial that's needed for their weight?
No. I oh, oh, that's a good point. It's a two milligram vial. You mean they could end up needing more?
Mhmm. I think I think I don't know. It's been so many years. I think we give about twenty five milligrams, but don't hold me to that.
Oh, wait. Wait. Wait. Wait.
I could be wrong. How many I think every infusion one of his infusions was, like, 30 to $40,000.
I was gonna say, didn't ask the right question. Like, how many vials do you need is the the extension to that question.
Yeah. And, obviously, like, if you're, like, one, right, like, you're a little itty bitty baby, you don't weigh the same as, I think he was, like, seventy pounds at the time. Actually yeah.
Did they did they just lower the age for it too?
Yeah. So stage it's lowered, I know, for stage two down, I think, to one. I don't I think stage three is still higher, but it's just how I think they researched it, you know, in that research study. So what they got it approved for.
Okay. And saying for an adult, like, weight, it could be so what what if this is right, it says most patients need 14 vials, one single dose vial for each day. However, dosing is based on body surface area, BSA of BSA of one point four nine four m to the m I don't know or less. I don't know what the hell that means. Or generally 14 vials total, but two vials may be required on days five through 14 making 24 vials total.
Oh, good luck. I I mean, I don't know. Yeah. I it's a it's a it's a I don't argue any side of this. Like, I think it's a thing if you could afford it or if you can if your insurance covers it and you wanna do it, I you should do it.
You know what I mean? And and and I hope it lasts you forever. But I I don't know. Like, I've always my question around t ziel's always been when this little bio company made it, prevention, I thought, oh, that's cool. It's this company, and that's all they're working on.
Then they sold it, and they sold it off to Sanofi. And Sanofi paid a lot of money for it so much so that when you look at, like, how hard it's gonna be to find patients for it and how much it costs and how what a a pain it is to actually even do it, I thought, are they buying the molecule or are they buying this idea? Like, I can't figure out. Do you know what I mean? Like, do they think this drug does something else, or did was somebody just punch drunk one day and was, like, 3,000,000,000?
No problem. We'll take it. Like because I think that's what they paid. How much did
Yeah. No. I I wanna know how much they paid. Oh, shit. Yeah.
I I don't know. Like, it's I live in a world like so my infusion center, it does about forty percent of the kids that I see are oncology kids. And so we give, like, chemo and cancer drugs. Okay. But, like, this new field of, like, immune drugs and biologic drugs that, like, can help with a variety of other diseases.
Like, I feel like it's booming, and my guess is drug companies just want part of that. Because, like, if you have that knowledge and how that works, can you use that same process that made TZealed in a different drug? Like you know what I mean?
Like Oh, that's exactly how my brain, like, thinks about this. Like, they must think they're buying something else. Like, Sanofi bought all of Provention Bio, not just TZeal. So they just bought the whole company. They paid $25 per share in cash in April 2023.
The announced equity value was approximately $2,900,000,000. Sanofi's later financial reporting describes the complete transaction as approximately 2,800,000,000. There was some sort of a must have been a coupon day. Largely a difference in rounding and transactional accounting, TZeal was central asset acquired in the deal. So they bought the they bought the company because of the TZeal, which back then they called, Timis Bob.
Yeah. And, again, my point is is that it's a thing that a lot of insurance companies don't cover. Even when they cover it, they make $400,000 on it, and you're a center who's only done 10 of them. So at your this is an argument to me that at your center, they've made $4,000,000. Let's say there's 50 of those centers, which I don't imagine there is, but 4,000,000 times 50 is, hold on a second.
I'm gonna guess not 2,800,000,000, but let's take a look.
I know. Or, like, we're also a pediatric center. Right? So, like, if you're an adult that's, like can get it or and adults will get it as, a home infusion. So I don't I mean, I don't know.
But you're also buying the rights to the drug.
That's what I'm saying. It feels to me like they're buying the molecule is what I'm saying. Yeah. I know nothing about nothing. No one's ever said this to me.
I know I just said five minutes ago, I know somebody that developed the drug, but I've never spoken to that person about this in my life. And, but 50 like, if 50 centers sold ten dose the like, to 10 patients, that's $200,000,000, which is nowhere near $2,800,000,000 is my is my point. And and it's hard to find the people to do it for. Like, that's been the central, like, problem behind this since the since they bought the drug. Like like, you know, remember, like I probably shouldn't say this out loud, but, like, you remember, like, screen it like you mean it?
Mhmm. Yeah. I mean, don't you don't have to dig too deep into that to see who's trying to get people to screen for their diabetes a little bit. And so, like, the point was that they're like my guess is they were like, we have this drug. This is amazing.
How do we find people to give it to? Oh, that's hard. And and now the and they're still at it years later trying to figure out screening and, like, you know, this whole thing. My point is that that's a lot of work to do to try to make back that much money on something that costs that much where you can't find people and insurance probably isn't gonna cover it. So so that's a that that would be like me saying, hey, Kristen.
I got this sofa. You wanna pay me for it? Give me $3,000,000,000, but you can't sit on it. You know what I mean? And you'd be like, well, why would I pay you that much money for a sofa I can't sit on?
And I'd be like, I don't know, but you're going to, and then you do it. So the so what's the reason in there? I that's the thing I wanna know. I'm gonna keep making this podcast till I figure that out. I have other things too.
Sanofi's latest public count says more than a thousand patients have received TZL. That's amazing. Separately, more than 900 patients received in clinic development studies. Okay. Well, nobody paid for that.
So let's just take it on faith that a thousand of these things made them $440,000, which to me does not sound how, like, this is working because I think your hospital probably got half that nut. Right? So let's say two right? I'm not wrong about this. So about 200
You're not wrong.
Yeah. Yeah.
Like, the med cost this, the hospital cost this, the doctors cost that, the surgeon to put the PICC line.
Yeah. So we'll use the number on the 14 vials. I just said 230,000 real quick. So, I mean, that's it's 200 and it's 230,000,000, which is a 250,000,000. I don't know how how how good you are with your, or the other answer would be, again, not $2,800,000,000.
Now Yeah. If they can get three so if my math is right, they need 3,000 more people to make up the first Billy, and then they need 4,000 more people to make up the second Billy. So that's 7,000 more people. And then probably another three, they need to they need to get 10,000 more people to take this drug to break even on the purchase price. And that's not adding in however much money they've spent trying to market it, which I'm gonna tell you, I bet you has been a lot.
So, again, they could have bought a baseball card and flipped it. You know what I mean?
I mean, they could have. And so you're probably like, it's not just the drug. Right? So they probably bought the scientific property of
that. I'm saying what is in that? What's the magic in there? Yeah. That's what I wanna know about.
Us little people will never know.
Well, they are definitely nobody's gonna like that I ask this question out loud. I can tell you that much for sure. But I'm dying to know. I I wanna know what they think they bought. That's what I wanna hear about.
Come tell me about that. I'd love to I also wanna hear I'm gonna start dig deep by this. It has nothing to do with anything. But this new, Lilly drug, the GLP, the I'll learn the name of it one day, but retrutatide or whatever that is. They I think they're saying it's gonna build muscle.
A GLP, and a five-pound fibroid1:02:27
First of all, yes, please. And secondly, I wanna know about that. Like, let's start talking about that a little bit. You tell me I'm gonna lose weight, be hungry, build muscle, cha ching. Let's let's go.
You know what I mean? You take that GLP, Kristen?
I've I've taken it before, and then I just got really bad. Like, I almost had, like, a short bowel obstruction, so then I I was like, it's not worth losing weight if I'm gonna be this sick.
Which one were we on the Ozempic?
I was on, Zepbound Zepbound. For a while, and I was like, I just am so sick on it. It was just not worth
You know when you were a kid, you said if you loved it so much, you'd marry it? I'd marry Zepbound. I just wanna say that. Yeah.
Yeah. I hear you talk about it all the time, and I was like, man, he's so lucky. I was like, I was I was
What happened to you?
Why I was puking like, I literally I was so constipated. I could not
That's not good.
Like, go. And so, like, I literally ended up almost with, like, a bowel obstruction to the point I was, like, profusely puking all the time.
What dose?
Literally, on, like, the five milligram. Like, I could never get past it.
You did you try
losing weight on five milligrams either.
Did you try the, like, magnesium trick?
I did. I tried magnesium. I tried, like, pulling it out in a vial and microdosing. It just
Scott, I could and then eventually, it came out the top. Is that what you're telling me?
Mhmm. Yeah. Pretty much. Did you So I was like, this is not okay.
Did you change your diet? Did you, like, get away from fatty foods?
I mean, eventually, I just ate, like, nothing but, like, fruits and vegetables is the only thing that sounded good, but it just I, like, barely ate, didn't lose weight, and was puking and miserable all the time.
I can't tell you. This is the saddest the saddest thing I've ever heard. I'm so sorry for you or anyone else who is not enjoying it the way I am. This is sadder than, than foreign brewers. I I a purse a person who can't take sap.
I mean, it's so good. The thing is is I had taken Mounjaro for a long, long time, like, when it was, like, way back when it was Mounjaro before Zepbound was a thing, and I lost so much weight.
Wait. But it's the same drug.
Right. But when I, like, stopped taking Mounjaro and tried to get, like, on Zepbound, I just my body was like, no.
No. But that I'm telling you it's literally the same molecule.
I know it is. But my body part of it well, Scott, like so I told you I was on disability. I ended up having, like, surgery because I I had a giant uterine fibroid and I had to have a hysterectomy. And so, like, I had gained all my weight back. So part of it's like now that that's over, I'm like, I wonder part of my constipation problem was that I literally had no room in my abdomen.
Get right back to it. Get right are you kidding me? I would I would dive on top of a needle like it was a grenade, and I was saving buddies in World War two. I'd be like, oh, right on top. So I just thought I'm
gonna try again. But
Well, I hope it works for you. I how you said you're 40
I'm 39.
39. Excuse me. I just said this on the podcast the other day when I was recording, so I guess I could just say it again. My wife just had the same surgery for the same reason. She had, like, a softball size uterine fibroid.
Mhmm.
And the recovery is terrible.
Yeah.
Yeah. How long you been off?
Get six I've been off, I go back to work next week, actually. So I've been off for five weeks, and this is probably the first week that I don't feel quite terrible.
Kelly goes back Friday. You she literally had hers, like, maybe a week before you, maybe not even a full week before you. Yeah. Yeah. I was surprised at how hard it was.
Like, when they gave her the six weeks at first I I said this on another episode, which you'll hear. Like, I don't I won't wanna belabor it. But, like, we were both like, six weeks. Stop it. Like, you know, like, my wife's never taken a full day off or anything, and I was like, six weeks.
I was like, she ain't taking off six weeks. The other day, she said to me, she was, I could use a couple more weeks. And I was like, she but she went to the doctor today. They cleared her for activity as long as it wasn't rigorous, which I took I was like, listen. I don't know how rigorous I could actually be.
Like, the but, like, you know what I mean? Like, so was like, I don't think we're in that much danger. You know what I mean? But did they go, like, laparoscopically for you?
Yeah. So mine, I mine was laparoscopically. Mine was, like, literally my, fibroid was the size of five, like, five pounds. So was, like, almost like a really full, like, Chipotle burrito. Like, it was it was massive, which I had gone to doctors for years and was like, there's something wrong.
And they're just like, you're fine. You're fine. Lose weight. And I'm like, but I did lose a bunch of weight, and I'm gaining it all back. And I it was a whole thing.
I actually accidentally fell down my stairs and hurt my hip and then had to get an MRI because my hip hurt. And the lovely ortho doc was like, ortho docs have a reputation. They're not all this way, but a lot of them are, like, athletes and they kinda have that jock vibe. And so he was like, blah blah blah. You need to go see an OB GYN.
Like, he's just, like, didn't know how to tell me. And I was like, you have to tell me what my MRI said. And so it was found accidentally, but it was huge. And my OB GYN was like, who squeezed me in, lovely lady, will recommend her to everybody because I was like I called an office and I was like, I they're like, it's gonna be nine months. And I was like, this is not a nine month thing.
Like and so they
Yeah.
Saw me very quickly. Yeah. She was like, no. Absolutely. Are you not waiting for surgery?
That is massive. That needs to come out.
How many grams how many grams was it?
It was it was five pounds.
Wait. That's like, wait, that's like is that like 2,000 grams?
Yeah. It was literally this massive. It took up my entire, like, pelvic region.
Oh, I'm gonna tell my wife to stop complaining so much. Hers is only eight hundred grams.
No.
Oh, no. That was Yeah. Wait. Will I tell
her Mine was huge.
When I tell her to stop complaining, that'll go well. Yeah. That's not gonna go all fast. Wow. Holy hell.
Wait. Is that the time when you couldn't take the Zepbound?
Yeah. So that's why, like Yeah. When I'm trying to hit the Zepbound, I'm like, I can't poop. Right? And I'm like so I'm like, I probably couldn't poop because I like, this thing's pressing on my colon, like, on the inside.
So, like, we just I think it's important. Space.
I think it's important first for me to not in case people can't tell from listening. But, by the way, if you can't tell from listening, shame on you. I am not a doctor, and you shouldn't take any of this advice. But, like, I'm gonna guess if you took Manjaro, you were fine. Tried Zepbound while there was a five pound burrito in your stomach, then I'm gonna guess that that was the reason you couldn't.
Okay.
So I mean, probably.
Yeah. And so, I mean, immediate like I said, throw yourself right back on Two and a half. Boom. You'll be fine. I wouldn't do two and a half for more than a month.
I'd go right to five. You're gonna you'll be fine. And if not I mean, I'm not telling you what to do. You can do whatever you want. I'm just I think you're gonna be okay, keeping in mind I barely graduated from high school.
So, but you're gonna try it again, you said.
Yeah. It's something I was gonna I'm gonna try again just because I
How much weight are you trying to lose?
Well, I mean, I I feel like everyone always wants to lose weight. So, I mean, with having my hysterectomy, I lost, like I've 10 pounds less now than
I was gonna say at least five pounds. Yeah.
Half of that was, you know, that. But I wanna lose I wanna get back to, like, one sixty. Like, I'm five six. Like, I've never been, like, a skinny person. I'm a very athletic person.
I have a bigger belt. And so, like, even when I was on Mounjaro and I got down to, like, one fifty five, I was skinny and sickly looking. Like Mhmm. So my body is not meant to be, like, itty bitty, like
Okay. Yeah. I mean, wherever you're comfortable is the right place. So oh, that's awesome. Well, good for you.
I it sounds like you got things going in the right direction, I would say. That's that's a nice thing. It's also interesting that your kid has type one. My wife's has type one. You both have a very similar thing.
It's interesting. Yeah. I don't know if it means anything, but it's interesting. Sorta like the Sanofi thing. Interesting.
Thanks. Okay. Alright. Well, we've done a good job here. Have we not talked about anything we should have?
Have I missed anything that you wanted to talk about?
No. I think we covered it all. It's just I didn't know if I, like when I emailed you, I was like, I don't know if I qualify. You're just like, you're nurse who gives it, and you're a kid who has had it. Like
What do mean qualify? Does anyone on here sound like they're qualified to do anything? This is just people just telling their stories. I'm certainly not qualified. I just wanna be clear about that.
I mean, you all
should listening to the podcast, and I'm like, I don't have anything to give these people. Like, my son's not on insulin.
No one's ever once come on this podcast and thought they were gonna be a valuable addition to it. It's pretty interesting how people think. They always are like, almost everyone gets done and goes, if you don't wanna use that, you don't have to. And I'm always like, what are you talking about? Like, that was great.
They're like, I don't know. Like, I was nervous, or I didn't know that. I'm like, you're out of your mind. This is fantastic. People get it.
I have a beautiful, like, guy told me online the other day. Really meant a lot to me. I'll mention it here. He said I kinda see the whole podcast as like a he's like, I see Scott as like a social scientist almost. Like, because we've been having so many conversations trying to, like, connect things together.
Like, I have no idea if your fibroid, my wife's fibroid, and our kids type one has anything to do with each other. But imagine if I just said it out loud and thousand women just went, oh my god. That's happened to me. Like like, imagine if, like, that's a thing that gets connected along the lines. If six months from now, two or three more women come on and go, hey.
I heard you say this thing. And, you know or by the way, because this happened to my wife, just interviewed a woman the other day who's just a she's just a mom of a kid with type one. But in her regular life, she's a some kind of, like, nurse. She it's a name for it. I forgot what the hell it was.
But she works in hormone replacement for women and GLP, and I said, you should book again and come back on just and talk about that. So she's gonna come back on. We're gonna talk a little bit about menopause and, you know, how to do stuff like that. I don't know. I just think it all ends up connecting together eventually.
So I'm really grateful you came on. Thank you. Seriously. Scott. Plus, you have a nice, what they call personality.
Like your you got a good vibe is what I'm saying.
Well, thanks.
Yeah. No. For sure. Like, your husband is a lucky guy. I'm sure he complains about you constantly behind your back.
And
He never does. He's very sweet. He's stressed so stressed yesterday and brought me coffee, and I was like, I love you.
He wait. Listen. When you had a what'd you say? A burrito? That's a that's
so Literally, it was, the size of a chipotle burrito. You know? Like, those things are huge.
The big wrap. Yeah. The ones where the guy go when he when he tells you the the white chicken and the bacon cost extra.
Mhmm.
Yeah. Yeah. Yeah. Bacon's extra. Okay.
I I mean, what am I gonna knock at bacon now? Like, you're already charging me $90 something I'm sure is worth $4. Like, why don't we just splurge and get the bacon as long as I'm taking out a mortgage here for the burrito? But that's a a very specific complaint about Chipotle. They're very expensive.
Anyway, I I've never eaten Chipotle. I'm only the guy that goes to pick up Chipotle for people. Because they'll they the the people behind the counter are like, how do you want this? Like, I don't this isn't for me. I wouldn't eat this.
Get a million anyway, it's not the point. So this thing's inside of you. Your husband never, like, walks up to you and goes like, hey. What the hell's in there? Are you okay?
Like, did you look distended? You must have looked prank pregnant.
Literally, for, oh my god. The last year, I'm getting a different, like, normal doctor after all of this. Mhmm. Because, like, I like and she she had been a great doctor up until this point, and a bunch of doctors left the practice. So, like, I think she just got burnt out, and they didn't have as much time to, like, normally dedicate to patient care, which is becoming a thing, right, when people retire and there's not new doctors.
And
Yeah.
And so but I was like I was like my my poor husband, I was like, I I was like, honey, like, I can't. Like, I feel like I'm pregnant. And I had gone to the doc, like, this is weight team. Like, any sort of relations were painful. Like, in that, I was like, this is not normal.
And they were like, you're fine. And I'm like, you're just anxious and used to lose weight. I'm like, that is not a lose weight problem.
Told you that? Mhmm. Come on. I usually blame the guys, but really? Like, she's like Yeah.
She's like, get moving, fatty. That's what she said?
Or she's like, I know that you're anxious. Like and she'd be like, well, now that you work in cancer, mean you're gonna die of cancer. I'm like, I don't think I'm dying of cancer. I think there's something wrong with me. Right?
Like, it was kinda like but wait. When you have to schedule an appointment because something's wrong and it takes four months to get in
While that thing's growing in
minutes to see you. Right? Like
I don't know. But you describe yourself as athletically built. Like, it's it's it's you knew that's not what it was. Right?
Right. And I'm like, there's something wrong. Like, you know and it's I'm not as athletically built because, like, it hurt. Right? Like, it like, my hips hurt for, like, a while.
Like and I'm like, you can't go workout or run or do all like, lift weights or squats if you can't, like, bend at the hips. And, granted, I'm also a nurse. Right? So I'm, like, going to work. I'm like, this is physically painful.
Or I'm like, I should not be
Yeah. Like, you're describing a physically active person, and the doctor's takeaway was you're probably anxious about having sex, about having cancer now that you've changed jobs, and what you're having a hysterical, like, swelling and get moving, and you're like, no. I'm act what a weird leap.
Yeah. It was just one of those, like or I'm like and there there's stories like this. I if you talk to people at health care, like, this happens to people. Right? Right.
And I'm a nurse, so I work in health care. I'm like, this is not okay.
No. No. I'm not okay. Listen. I'm done making excuses for people.
Okay? There's a burrito in your belly and someone goes, you're probably just anxious. I don't know what to say about that. Like, that just seems like you jumped to the way wrong conclusion. And I do think for certain, we you and I talked about this before we turned on the microphone.
But if you would have typed all your complaints into any one of these large language models, any one of these chat GP whatevers, it would have come back and said, have you looked at this? And how hard would it have been to run a Doppler over here real quick and take a look?
Right. It really would have just been a simple ultrasound, and it should have been caught. My sim my symptoms of my fibroid got really bad when, and I had to cancel my OBGYN appointment when my son was in the hospital the first time. So, like and then I just was like, well, I can go to my primary care for this. So it was my bad, and my then my OBGYN retired, and then I just never got a new one.
It got much bigger. You could've shined a flashlight on yourself sideways and seen it probably.
Right. But, like, you could, like, press on your belt, like, my belly, and I was like, it was huge.
What is this?
It was like a twenty four week pregnant belly. Like, the OBGYN is like it's like you've been twenty four weeks pregnant for a year. And I was like, yay. It's not me.
Even your your practitioner, did they not did they go are you still getting your period? Like, I would have asked. Did did you get asked that?
Well, they asked, and I was like, it's it's abnormal. Like, oh, well, just welcome to your age. Well, like, it's probably perimenopause. I'm like, I hate you all.
Yeah. No. No. No. You're being nice because you're a nurse, but I know what you're thinking.
And so okay. They my last two questions, they leave your ovaries?
They did.
But you're still on an estrogen patch now?
No. I'm not on any hormones. I go back to my six week follow-up next week, and then, my guess is I probably will be because I'm having way more symptoms of perimenopause than I've ever had.
So Oh, the lady I talked to yesterday who I'm gonna have back on says that if you get on them in that first ten years, it extends your life and it it eliminates a lot of issues like osteoporosis, brain like, all kinds of things. Like, if if it's appropriate, I say she's saying you should do well, I'm saying look into it, but you should do it probably. So not not that you haven't figured this out already, but you've been sitting around for five weeks. I'm sure that's what you've been googling.
Well, I've been home with my kids in the summer, so it's been fun.
These kids, they're ruining your life. I know it. Don't worry. It's fine. Alright.
You're awesome. Thank you very much for doing this. Hold on one second for me. Something new just arrived from MiniMed. It's the MiniMed Flex system.
Think about everything people love about MiniMed technology, designed for great outcomes, helping keep you in range, and made to be easy to use. Now in a pump that's the size of two stacked vials of insulin. MiniMed Flex is fully controlled from an app, designed to stay tucked away, empowered by the proven automation that helps over six hundred thousand people manage diabetes day and night. Order today, minimed.com/juicebox. Having an easy to use and accurate blood glucose meter is just one click away.
Contournext.com/juicebox. That's right. Today's episode was sponsored by the Contour Next Gen blood glucose meter. It's the meter my daughter uses. She has it on her right now, and you're one click away from having it too.
And don't forget using juice box podcast links helps support the show. Friends, my diabetes pro tip series is about cutting through the clutter of diabetes management to give you the straightforward practical insights that truly make a difference. This series is all about mastering the fundamentals, whether it's the basics of insulin, dosing adjustments, or everyday management strategies that will empower you to take control. I am joined by Jenny Smith, who is a diabetes educator with over thirty five years of personal experience, and we break down the complex concepts into simple actionable tips. The diabetes pro tip series runs between episode one thousand and one thousand twenty five in your podcast player, where you can listen to it at juiceboxpodcast.com by going up in the menu.
If this is your first time listening to the juice box podcast and you'd like to hear more, download Apple podcast or Spotify, really any audio app at all. Look for the juice box podcast and follow or subscribe. We put out new content every day that you'll enjoy. Are you tired of scrolling past clips that last five seconds? Are you an adult?
Would you like to have a long conversation? Juicebox podcast is the place to be. Follow and subscribe. I'll be here tomorrow with another episode. I hope to see you again.
Read the full disclaimer
© 2007–2026 Juicebox Podcast. All rights reserved.
