Scott Benner 11/10/22 Scott Benner 11/10/22

#785 Tommy's Mommy

Heather is Tommy’s mom and he has type 1 diabetes and his sister has celiac.

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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
Hello friends, and welcome to episode 785 of the Juicebox Podcast.

For those of you wondering who Beatrice is, she's the daughter of a friend of mine who's sick of hearing my voice. That has nothing to do with this episode. On this episode of The Juicebox Podcast, we're going to be speaking with Heather. She's the mother of a child who has type one diabetes, and another child who has celiac. While you're listening, please remember that 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, or becoming bold with insulin. The T one D exchange is looking for adults who have type one diabetes or people who are the caregivers of people with type one diabetes that happened to be US residents and they'd like you to go to T one D exchange.org. Forward slash juicebox to join their registry and fill out the survey. T one D exchange.org. Forward slash juice box. If you don't know what the D one D exchange is, Episode 783 will tell you everything you need to know if you already know and you want to do me a solid T one D exchange.org forward slash juicebox go complete that survey

let's take a second to thank us med for sponsoring this episode of The Juicebox Podcast. How do we thank them. We go to us med.com forward slash juice box or we call 888-721-1514. Either of those things will lead you to your free benefits check and get you on the road to getting your diabetes supplies from us met us Matt is where Arden gets her supplies and you could to us med.com forward slash juice box. This show is sponsored today by the glucagon that my daughter carries G voc hypo penne Find out more at G voc glucagon.com. Forward slash Juicebox Podcast is also sponsored today by touched by type one head to their website touched by type one.org To see all that they're doing, including their D box program for newly diagnosed people. You go there and just say hey, I've been newly diagnosed with type one. I'd like some information and some resources and they'll send you a box full of goodies touched by type one.org

Heather 2:39
My name is Heather. I am a mom, a nurse, a wife. My son is the type one diabetic. He's here with me. Pretty Hi. Hello. Hey, what's up? My name is Tommy. He is 12 was diagnosed. Almost at nine years old. It was we spent his ninth birthday in the hospital.

Scott Benner 3:06
That's about it. One child.

Heather 3:09
I have three. He is my only son and my middle. Okay, so two girls. Yeah, a 19 year old keys 12. And then we have a 10 year old as well.

Scott Benner 3:20
Gotcha. Is there any other type one or autoimmune in your immediate family?

Heather 3:25
Zero? Nothing? No, his um, his grandma has thyroid, but she had like, drastic weight loss. So they always have chalked it up to that. That her thyroid like just couldn't keep up kind of thing.

Scott Benner 3:43
Her but Tommy's grandma um, your mom or his father's mom?

Heather 3:47
His father's mom.

Scott Benner 3:49
Okay. Are you married?

Heather 3:50
Yeah. My mom is adopted. So we don't know. Anything beyond her. Okay. And then my dad has nothing. His mom is 94 I think and she takes blood pressure medication. That's it. So she's healthy as a horse. It's

Scott Benner 4:08
crazy. Yeah, okay. You said his father's Are you divorced?

Heather 4:14
His father passed away. He was five.

Scott Benner 4:17
I'm sorry. That's that sounds crazy. Yeah. All right.

Heather 4:23
It was unexpected. So it wasn't like a medical thing.

Scott Benner 4:26
I say, Okay. I just want to understand the lay of the land. So all right, so we're good. Yeah.

Heather 4:32
Yeah, I am married. But it's not his biological father. Gotcha.

Scott Benner 4:37
All right. Well, three years ago diagnosed came out of the blue obviously. Can you tell me a little bit about what happened?

Heather 4:45
It was late August. School had started 10 days two weeks ish prior. It was his first soccer practice. So my mother in law picked the kids up from school. I was at work. I'm an emergency Even nurse. So I was at work and she picked them up for me to come to her house. I got off work early. It was Tommy's first soccer practice of the season. So she has a pool. She it was a half day the kids get out early on Thursdays. So she picked them up, took them home, let them swim, you know, hang out before soccer practice, I pick them up. She's like, I put extra water in for Bob. He's just been like extra thirsty today. I was like, and it's you know, it's August. It's hot here in California. So I didn't think anything of it. We went to soccer practice. It's about a 40 minute drive ish from her house to soccer practice. He makes me pull over to pee, which didn't think anything of it again. I pull over. He pees on the side of the road. We get to practice. Half hour into practice. He's gonna have to pee again. And I'm like, What the heck Okay, so we walk him up to the bathroom. He goes to the bathroom, finishes soccer practice. He downs, both water bottles that I had for him on our way home, which is about a 10 minute drive home. He makes me pull over again. UPS don't want to eat dinner. Everything's he's acting totally fine. No, you know, nothing. So between eight o'clock, or I'd say nine o'clock that night and 7am that morning, he got up four times to pee in the middle of the night. He normally pees at nighttime, like once a night at this point. So by the third time I'm laying in bed, like what the heck, you know, and the bathroom is like catty corner from my bedroom. So I wake up every time we go to the bathroom. And I'm like, What is going on? So my nurse brain kicks in, you know, and I'm like, differential diagnosis, everything here. And of course, type one is in the back of my head. So wake him up that morning. And I'm like, hey, you know, do you feel okay? Is everything fine? He's like, Yeah, I'm fine. Like, you good. I'm good. Like, I don't you know, thinking I'm crazy asking all these questions. I make him pee in a cup. Because I'm like, maybe it's a UTI. Or, you know, I just want to like, do my nurse stuff. You know?

Scott Benner 7:20
You're a nurse. You love making people pee in a cup. So it's like,

Heather 7:23
yeah, normal thing here. Yeah. So it's fine. You know? No odor. No, no discolored, nothing. So I'm like, you're good to go to school. He's like, Yeah, Mom, it's Friday. I can't miss a Friday. Like, okay, so I send them off to school. He's not the easiest child at that age in school. So the teacher walks out. And I'm like, Oh, cool. Would my kid do today, you know? So she gets into the car. And I'm like, what happened? She was like, no, no, no, no, nothing bad. Like, he was great. But he peed all day long. And I'm like, okay, great. So his birthday is that weekend. It's supposed to be on Saturday. So we go to the grocery store. And I'm like, you know, my husband is a fire paramedic. So normally, I would run things by him, you know, like, hey, what do you think about this? Well, he's on a fishing boat in Mexico. I can't get a hold of him. So I called my best friend who is nothing medical. And she's like, You're crazy. The only reason you think that because you're a nurse. Like, if it was any other mom, they wouldn't be thinking this way. Blah, blah. So I was like, Okay, you're right, you're right. Like, there's no way it's diabetes. Like, why would that be a thing? So we're at the grocery store, I got the cake and the ice cream and all the things, you know, any in line, and he's like, if I don't have water, I'm gonna throw up. When I was like, water is going to fix you like, what do you what do you mean? So there's, you know, I let him go get like water from the little fridge, things in the aisles, you know, at the checkout, and he literally drinks the whole thing in like 30 seconds. And it right then I was like, Okay, we're done. So my best friend actually, they thought she had autoimmune stuff. So she had a glucometer. So I call her I was like, Hey, I'm coming over, we're checking his sugar. I can't like go another minute without like, at least getting this thought out of my head. Right. Right. So we check it and Hi. And I was like, I just kept saying, I think knew it, I think knew it, I think knew it. So I throw my other kid to her all the perishables you know, that I just shopped for and him and I had to we went to my hospital, which I shouldn't have in hindsight, because we don't have pediatrics there. But, you know, I was kind of spinning At the moment, I just wanted to go somewhere. I knew I have

Scott Benner 10:03
a question. The idea that if I don't drink, I'm gonna throw up. I've never heard anybody put it that way before.

Heather 10:12
That's all he kept.

Unknown Speaker 10:14
I mean, he's here. It was really weird. It was like, I like had when you were like, right about to throw up. That feeling like in the back of my throat was weird. And I also had the feeling that, like, I needed water at the same time. And then when I drink the water, I was fine. Like I didn't like it was weird.

Scott Benner 10:34
Okay. Hey, Heather, if you put him on again, get the microphone closer to him. Okay. Okay. All right. But all right. That's I mean, that's really interesting and good, like firsthand feedback. It's I mean, he's in decay, obviously. What was his blood sugar when you got into the hospital?

Heather 10:49
Oh, he wasn't in DKA at all? No. No. His sugar was five, something 566 60s Somewhere around there. High fives. But no ketones. They you know, they did all his blood work. And there was no he wasn't in decay at all.

Scott Benner 11:10
Okay, Sugar was just high. So did they keep him or did you guys

Heather 11:14
we were transferred by ambulance to the children's children. The local children's hospital. Yeah.

Scott Benner 11:20
And they you stayed there for a number of days.

Heather 11:23
We stayed there. So we get there on a late late Friday night. And apparently, the diabetes educator had just resigned. And they only had a Monday through Friday, diabetes educator, like a eight to five Monday through Friday kind of person. So we hung out in the hospital for two days with nothing just, you know, insulin, I mean, insulin, but no, they wouldn't let us go home. Right. And so we got the proper education and blah, blah, blah. So 7am Monday morning, my husband is literally like at the nurse's station, like let's go. We're leaving. Give us what we need. So we left late Monday night.

Scott Benner 12:12
Okay. How was the I don't just want to know about the initial bid. But you know, these past three years? Has it gone? Smoothly? Has it been? slow going? Are you in a good place? Or house? Yeah, we're

Heather 12:28
in a good place now has a once he was only eight at diagnosis. So we caught it really, really early. And he's 6.2 now. So yeah, we got him the tech really early. One of my husband's co workers, his son had just been diagnosed within like six months of our diagnosis. So he reached out to my husband, you know, because word spreads pretty quick through the department and stuff. And he reached out and he literally was like, Dexcom pump education. Like that's, that's what you need to know. So I was in the hospital googling what to do. I had no idea what a Dexcom was like, that isn't in my emergency. Right, you know, brain so so we we got them a Dex calm. I would say within like six weeks, eight weeks, he had a Dex calm. And then six months at the most had a pump.

Scott Benner 13:33
And who managed it mostly because I'm trying to figure this out. Like if you're, if your husband's doing emergency services, and you're working in a hospital, I'm amazed. I'm imagining excuse me that your schedules are all over the place.

Heather 13:46
Schedules are out of control. Yeah, I manage. My husband doesn't really unless I'm gone and he obviously is here with him. But I don't even think he has I don't even think he follows him on Dexcom to be honest.

Scott Benner 14:01
Okay, so it's I don't really know that

Heather 14:04
you and I do. I do.

Scott Benner 14:07
Basically you and Tommy are is Tommy like How involved is he?

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Heather 16:27
Very, very involved. Yeah, he goes to school and does it pretty much all on his own. I text him but if he responds, yeah, if he responded, see,

Unknown Speaker 16:37
because school school was like, so much going on. I'd never feel my phone vibrate or anything. And I keep it on silent because I get trouble.

Heather 16:47
I do have a pretty strict phone, no phone policy at school. So

Scott Benner 16:53
I texted Arden for about two hours this morning trying to get her attention. And she finally was like hi.

Heather 16:58
Yes, literally, like I get like, I have like the read receipts on his phone. And I tell him like just read it. Like you don't even have to respond. I just read it. And then I know you saw it at least but I don't even get that. Like it just he pretty much manages on his own. Oh my gosh, while he's at school.

Scott Benner 17:18
Sure. Yeah. So that so that's kind of that's very interesting, actually. So he's making decisions about his meals on his own. I mean, do you tell him how many carbs are in it? Or etc

Heather 17:30
does he Yeah, I pack his lunch every day. And I it's a like a paper bag. And I write the carbs on the bag. Okay, and then he'll dose what I write on my bag. I keep it within the same it's either 20 or 30 Like it's one of the two usually depending on like what sports he has that day or he can't have any insulin on board to for activity I mean if he has like one unit that's about the most he can he dumps he gets anything Yeah, really like he's very very sensitive during exercise.

Scott Benner 18:10
So are you saying on days when there's activity after school, he gets a fewer carbs at launch big so that you can use less insulin.

Heather 18:19
It's usually PE that I worry about during the day okay after school that you know insulin is usually gone by his after school stuff. But if he has PE after lunch, then I have to like kind of reduce the carbs in his lunch

Scott Benner 18:38
got does he eat similar things over and over again or just you keep the carb count similar

Heather 18:44
be pretty much eats the same thing. I might change up the like fruit or chips that he takes. But for the most part, it's the same thing pretty similar. Okay, sandwich pickled jello, you know, cookies or

Scott Benner 18:55
chips? Pickles and jelly.

Heather 19:00
Like favorite. You takes jello every single day. He loves jello. You just it's easy. So

Scott Benner 19:05
yeah, you just had fruit now i realizing when I'm done here. I have grapes in the refrigerator. I'm gonna go have some he, he loves fruit. I just I'm just amazed that as I'm talking I'm listening so intently to you. And then you said something and my brain was like you should have grapes later.

Heather 19:24
That sounds like Tommy's brain. Yeah. Well, I didn't even said what

Scott Benner 19:32
what can I ask like what what made you want to come on the podcast?

Heather 19:37
I listen. Pretty much daily. I'm not caught up yet. I started from the beginning. I'm one of those so

Scott Benner 19:44
I appreciate you very much. And you

Heather 19:47
add I'm getting there. Wow. Nice. Yeah, how long? Every single day but yeah, how long did you start? Yeah, no, it's definitely a single day. Oh, wait,

Scott Benner 19:56
hold on a second. Tommy says you listen every day. Yes, curate.

Unknown Speaker 19:59
Every morning every morning, I wake up to the sound of you.

Scott Benner 20:04
That makes sense to me, Tommy, that's, that's my goal. So I apologize that you have to hear my voice, but I'm not.

Unknown Speaker 20:12
I think it's kind of cool. Because like, it's cool that my mom enjoys listening to things that helped me. It's

Scott Benner 20:20
really cool. That's nice. So, so you started, how long ago? Did you start listening other?

Heather 20:28
Two years ago, probably honestly.

Scott Benner 20:30
Wow. See? That's

Heather 20:31
why I say it's not everyday. Well, this

Scott Benner 20:33
is the dedication I need from people, like you're really putting in the work to listen. Thank you.

Heather 20:38
Yeah, I mean, it. The same thing that everybody says, you know, like, you don't get near what you need from a doctor. I mean, I see him every three months. And ours has been zoom for two years now. Yeah. So it's really nothing, you know, I make all the changes myself. I do it all. I mean, I literally go so that they'll renew my prescriptions for things. And I mean, and they're great. They're nice. They're, they're lovely, but they don't I mean, they do. They don't really do much.

Scott Benner 21:11
Is that hard for you to say being a nursing professional? Is it? Is it No, no, it was it was it was a true. I mean, was it even surprising?

Heather 21:20
It was surprising. For sure. When I went into it, I knew I know how to get someone out of DKA. That is what I know that is my wheelhouse. I've been a ER nurse for 15 years so I can get you stable. And then I give you to someone that can teach you how to manage I don't teach people how to manage type one diabetes. Yeah. So I thought I was gonna go into this world of education and knowledge. And you know, all just no one even mentioned CGM, or Dexcom, or nothing, a pump nothing to me while I was in the hospital. And if I would bring it up, it was like, oh, we'll talk about that later. You know, oh, we'll cross that bridge later. And I was like, no, what do you later know, like, this is now this is happening now. Like, I don't want to talk about it later. So his first appointment after diagnosis, I said, I want to Dexcom and she, like, she's a very, very nice lady. But she just kind of smiled politely and said, Oh, well, you know, we'll cross that bridge. And I said, No, I'm at the bridge. And we're gonna cross it today. And she was like, Well, you know, we'd like people to know how to manage better. And we're assigned a nurse Anna, Anna physician at the clinic. And the nurse spoke up for me and she said, She's, uh, you know, 13 year er, nurse or 12. At that point, whatever. I think she's okay. I think that she has her knowledge base. She's not going to, she's not going to understand diabetes more than she already does. I think that, you know, they're ready. And then she looked at my nine year old and said, Are you ready? And he was like, what? For? What? I don't know. What am I ready for? Like, yeah, you know,

Scott Benner 23:06
yeah, I just come here, because they tell me to, and then we're gonna have lunch later. So leave me alone. Literally, exactly. I don't understand. I don't understand that concept at all. To be perfectly honest. I mean, you know, can you imagine if someone came into the ER, and they were experiencing, I don't know, like skipped beats in their heart or something like that. And they said, hey, put me on a heart monitor. And you were like, well, we'll cross that bridge when we get to it. Like, why are we not there now? And what what exactly is going to happen? Having good data? Like, how's that going to stop you from learning diabetes? And

Heather 23:39
no, it literally all it was doing was saving his fingers. Yeah, the CGM light. And that's what I explained to them. Like, I'm checking sugar. I took six months off of work, after he was diagnosed, because the school was they were lacking education for, you know, to be nice. And they had no idea that the nurse there was an LPN. And she was a hospice nurse prior to being a school nurse. So she had, she just had no idea on how to manage a type one child at all. I mean, it was to the point where like, when he's, oh, I give them insulin, right. And I was like, whoa, whoa, whoa, like, everyone's slow down. God, yeah. So I bought like books. I literally made a PowerPoint. And like, took it in and the principal and the teachers and the nurse, were all there and I like went over everything with them. I went in three times a day. I went in for snack for lunch, and then after two hours after lunch to check a sugar for six months I did this. So

Scott Benner 24:52
did you learn a little bit? Did you personally I learned

Heather 24:55
Yeah, yeah. I will say the biggest thing I took away from is like not to be so scared. I was so scared to send him anywhere. With out maybe like, I'm just staring at him like, are you good? Are you bad with sugar? What are you doing? How do you feel? You know, like, you know that for until that? Yeah, until the Dexcom pretty much our first soccer practice after diagnosis. Because I mean, he's nine, and he's active. And he's like, I play on the soccer team. why don't why am I not going to soccer practice? So it was literally a week from diagnosis. He was like, I'm going to soccer. It's Thursday, right? And I was like, yes, yes, you are. Sure. Let's go. So, you know, at that point, I felt like I was carrying a suitcase of stuff around. And I'm like, let's go to practice. So then after practice, he's, I've been like, really good about the food and the carb counts, and measuring and weighing and all that stuff. And he said, Can I have McDonald's? And I was like, okay, normal kid, Kid first, like, I want to give him what he wants. I don't want to, you know, sure to feel different or whatever. So I'm like, Yeah, McDonald's. Sure. Let's do McDonald's. So I Google it, the carbs and Dosen. He eats, you know, just going along. And he's like, I'm fiddling in the kitchen, and he's finishing up and he's like, Mom, I don't feel good. And I was like, What do you mean, you don't feel good? And he's like, I don't know. And I turn around, and he's gray. And I'm like, Oh, my gosh, so I go and I get the glucometer a check on 27.

Scott Benner 26:33
Oh, yeah, members. Yeah.

Unknown Speaker 26:36
Yeah. I don't remember like the McDonald's part. But I do remember coming home. She's doing something in the kitchen. And I come out of my room and I'm like, I don't feel good. Like it was just so fast. Right. So I kinda it's not. It's not the same as it was. Probably because I've never been that low ever. Like, that's the lowest point I've ever been. But it was like, it was quick.

Scott Benner 27:03
Yeah. What happened? Did you over Bolus for the food do you think and then it caught up to him?

Heather 27:09
I think he was still kind of honeymooning. But we had no CGM. Yeah, so you know, I check his sugar before he ate. I counted the carbs I gave them. It was McDonald's. So it's a hefty Bolus, right. And I, you know, I get and I think the exercise preceding that I didn't take into account now I know how sensitive he is to exercise, but I have no clue then.

Scott Benner 27:34
The story takes me back to what you said about the, you know, the the people at the hospital who get to decide whether or not you get technology or not, you know, this very basic, old timey idea of oh, you need to understand it without the tech first like, there's nothing about going through that experience without a CGM that made you better at anything. He

Heather 27:55
made me worse. Yeah. If anything, it made you scared. Yeah. Yep. That's at that point. I remember calling my husband. And he was at work. And I was like, I'm taking six months off. And he was like, six months, like, what, what are you talking about? And I was like, I'm taking a leave of absence from work. There's no way I can leave this kid. Like, there's no way.

Scott Benner 28:17
So my opinions like Oh, coming here, you know, he was like, oh, geez, I gotta get another job. But

Heather 28:24
I got paid. I mean, you know

Scott Benner 28:25
what, so many people have that initial feeling. And that's what I'm saying. Like, if in that moment, that McDonald's example, if you have a CGM, you would have gotten, you know, hit beat, you know, beeping and arrows, and you would have said, Oh, gosh, something's happening. And you could have given him sugar previous to him getting to be I mean, 27 He was just about ready to have a seizure. Right? Yeah.

Heather 28:47
I mean, it's, I literally had dreams about it for I don't know. No, I bet you. I would say I but yeah, I mean, I'm sleep with me. My nine year old child that slept with me since he was, I don't know, ever Yeah, he's not a co sleeper. He never has been. So I, you know, he was like, Can I When? When can I be done with this? I remember him asking. When am I allowed to go sleep in my own bed? Yeah. My husband is sleeping on a full in the, in his room, and he's in my bed with me. Well, let me you know, like it was.

Scott Benner 29:22
Yeah, let me tell you something. This is funny. You bring this up, because just yesterday, Arden had a like a sticky 190 blood sugar after a meal. And she's not feeling well. So I went after it with more insulin, and much more quickly than I anticipated. She was She dropped. So I probably either got too aggressive or got aggressive in a moment when she was about to come down to begin with. But anyway, 30 minutes, you know, 40 minutes later after this, this Bolus, she was 85 Two hours down. I have not seen two hours in a really Last time, and it was not a big deal because we got the notification. And, you know, she drank a little bit of juice had a little bit of stuff. And we caught it before it was ever a low. But even at my level of understanding without a CGM, I never would have expected that drop like that. It just, it was outside of my, it was outside of my belief in that moment that that could happen. And so, I mean, I've been doing this for a long time if Arden's almost 18. I've been, you know, I've been doing this for like 16 years. And I'm the guy from the podcast. And I got taken surprise, by surprise the other day, and in the CGM, the Dexcom, save my butt, and Arden. So I don't get the idea of you need to struggle before we let you have this technology. I hear I hear that I would always I wish that, you know, I realized back then you were new to it. But I wish you would have had the wherewithal then to say why? And just ask them why. Why are you saying that? Because I don't know that. The next explanation is going to make much sense. You know, other than this is how we do it. So which Yeah,

Heather 31:09
that's the, you know, our first appointment. That was pretty much what I said was like, why don't why? Yeah. Like, like, well, we need you to have a better basis of knowledge. And I was like, then my bachelor's degree in nursing. I don't you know,

Scott Benner 31:27
yeah. Or how about why can I get that knowledge ball? I have the safety system and a Dexcom. What's, what's wrong with

Heather 31:33
Dexcom? give you knowledge. That's what it is, is knowledge. You know, oh, and Apple hits him like this. Oh, okay. Right. You know, oatmeal hits him like this. Oh, okay. Like, it's all you know,

Scott Benner 31:46
that I'm telling you exactly what it is. I'm telling you right now, that's a bullcrap answer from them. And yeah, it's just unless you're just listen. I mean, is your pot roast?

Heather 31:59
Yeah. What it is? Yeah, yeah,

Scott Benner 32:00
exactly. They just they say they say it, because that's what they say. Listen, there might be a situation where there's a family in there, where maybe, you know, maybe I don't know, what if your parents don't have two brain cells between them? Maybe they're a little scared to give you something like that. But this is clearly not your situation. And I just find it to be antiquated advice. And I'm not a fan of Yeah. So

Heather 32:22
yeah, I mean, his first and no one's ever given him an object an injection, but me and my husband, even in the hospital, the nurse came in and she's like, Okay, are you ready for your dose for breakfast? And he looked at her and he said, you're not you're not touching me with that needle? I don't know. I thought he was scared. You know, I thought it was like a scared thing. Right? And he looked at me and he said, You're a nurse, you do it. And I was like, okay, like, yeah, that's, I feel like that's reasonable. You know? What, I'm a nurse and too, I'm gonna be doing anyways. And then the nurse told him like, oh, no, no, buddy. You know, like, that's not how it works. And he told her, he was like, you're not. You're not gonna do that how it works. Yeah. And he was he was dead set and looked her straight. And I he was like, that's not happening. Yeah. And so and she was like, Are you comfortable mom? And I was like, giving an injection? Yes. Like, I think I'll be okay. Got it. Yeah. And then, you know, you go into the room, and they're like, here's an orange. And my husband and I looked at each other and we're like, great.

Scott Benner 33:27
She's a nurse.

Heather 33:30
I don't think that nurse that the night shift nurse when we got there knew, but I don't think it was passed on, I guess and report or whatever. And then the educator had zero idea that we were medical. had any? Yeah. Yeah, she had no idea. Wow. So we, I mean, we just went well, I don't, you know, I don't really like wear it on my forehead or anything. So I just kind of went along with it. And I was trying to be nice. And listen, and you know, this is glucagon. You take it out of here, and you put it in and I'm like, like, like I did yesterday at work. So

Scott Benner 34:06
you're so You're so polite, but I got a call. How do I tell a story? So I had to I put my name Arden's name on the list for Omni pod five through on the pod just like everyone else, you know, who used my LinkedIn and yeah, and I got a I got a call from you know, just a salesperson basically from from lollipop and they're going over everything and she's explaining it in this just very basic detail. And I stopped it I believe, I was very polite, and I said, Hey, listen, can we just for the, for the rest of this conversation, you should assume that I know as much about this as could possibly be known. Like I don't I don't need you to tell me the real basics of all this. And she was like, oh, okay, and then just was able to change streams. But you know, I do understand like In all these situations, They don't know what you know, you know, and it's it's their job to put it out the way they do it. It's just It gets frustrating sometimes even, you know, like, even when you call someplace, I don't know how to place an order for something, they start asking you these benign questions about like, my favorite one is I called What the heck is that place where we used to get our medical supplies from? Oh, my God, how can I not think of it? Anyway? We use a new place now. But that's not the right call the in the first day of the question the lady says is does your daughter use insulin? And I'm like, calling you to get insulin pump. So the first thing I said to you was, I need to order insulin pumps. And now your first question is, Does my daughter use insulin? Like, yeah, okay, like, I know you're reading from a list. But when does common sense come into this conversation? And they

Heather 35:55
are just a little bit of, you know, thinking before you speak kind of thing,

Scott Benner 36:00
and I completely understand that that's the job and that she needs to read that list. But I'm not I mean, it's not incredibly frustrating. But after it happens to you a couple of times. Oh, like, couldn't you? Couldn't she have just said, I realized she uses insulin because you're ordering insulin pumps, but I need to ask you this, like, legally, so or whatever. And I would have been, I would have responded yes. I don't know. I'm

Heather 36:25
physical for sports the other day, and I just went to like the local chiropractor's office. It's quick, easy. 40 bucks, you walk out, you know? And is there any medical problems? I said, type one diabetes, okay. They write it down the night, you know, asked another something else. Something else, any medications? And I just like, insulin, it's like, yes. When he was like, oh, oh, it's okay. Like it like took him by surprise. I was like, wait, what in the heck? I don't know. Granted, he's a chiropractor, I guess. But I don't know. They probably don't see type one kids very often. But you know,

Scott Benner 37:03
I was in an intake, meeting with Arden as she switched OBS. And the same thing. Like the questions for 10 minutes, were just mind numbing. Like, you would have very little about diabetes, not to have to ask these questions. And you just sit there and not along and at least memory here. Yeah. I know. I just think about poor Arden. Like for the rest of her life. Happy to sit in a room going Yes, yes. Yes. Yes. Yes. Yes. You know, like just being irritated.

Heather 37:32
Yeah. Always. They always ask restrictions or any restrictions for sports. I'm like, no, nothing is all good. No. Are you sure there's no restriction? Like, you know, because

Scott Benner 37:42
you just said he had diabetes. So you show there's no restrictions? Yeah.

Heather 37:46
I think that's what they think. And then I'm like, nope. And they're like, really? Like, you know, yeah, I just, it boggles their mind. And I'm like, he's fine. Like, he's good. Yeah,

Scott Benner 37:57
I just interviewed Robin ORS on yesterday. It's not even up yet. I saw that. And she's, you know, I mean, she rides that bike, like a, like a lunatic. And she's, she's okay. She's going crazy. And she just had a baby. She did. Yeah, she's a new mom. And yeah, so that's what I think of restrictions. So I keep hearing Tommy cough Is he is he got the struck by the rubella? What's going on over there?

Heather 38:23
No, I don't. This whole household is going through this. That's my voice is kind of

Unknown Speaker 38:29
people at school sick because of it. Now I got mom sick and she's never sick. Because she's got a whole bunch of stuff to do today.

Scott Benner 38:38
Little Typhoid Mary. She's,

Heather 38:40
I don't know. I think it's like the spring cold, I guess. I don't know. Like, we never get sick. I mean, I I feel like I see every illness ever. Right? You know, being where I work. And my kids both go to public school. Like, I feel like we're good. But for whatever reason, this one got us

Scott Benner 39:00
started. The other day, she was at school and she she texted me and she said the tire is low on the car. She talked and she's like, I need somebody yet to come over and put air in it before I leave. I don't think I should drive with like this. And so I happen to be in the parking lot pumping up Arden's like car tire when she walked out of school. And she had this like fun, like kind of fun, like playful face on. She's like, I just got out of there she goes. So many kids have a stomach bug. I held my breath through the hallway. Here too. Yeah, it's all over the country right now. It seems like it's so weird.

Heather 39:33
Yeah. How have you knock on wood? Haven't got that one. Like my biggest fear with him? I can't. We haven't ever crossed that bridge. So

Scott Benner 39:43
I just don't want to be sick. And, and I know I don't know about Arden. Arden doesn't usually get sick that way. But you know, just he doesn't either.

Heather 39:53
He's always respiratory. He's always like, cough or throat or you know, Dentist tonsils out when he was, I think five. Oh, wow. Yeah. He's always had. That's what I feel like maybe pushed it I guess because they always say you know some kind of you had strep forever. I mean, four or five times a year he would have strep. Really? Yeah. Until I got his tonsils out at five and he's never had anything sense

Scott Benner 40:24
do you girls have? Have you ever checked them for anybody's done try? We

Heather 40:30
did We did try on it. Yeah, we did try on it like the first month pretty much like I think I ordered it while I was in the hospital. And then they're both negative. But my oldest has celiac.

Scott Benner 40:46
Oh, okay. Oh, so that is so there is autoimmune in your family then? Because I guess Yeah, I never think of that. I didn't know I I know people,

Heather 40:54
like moms, grandmas. I don't ever think of my kids.

Scott Benner 40:57
But tell me a little bit about the her celiac diet because we were actually talking the other day about having Arden eat gluten free for just a couple of weeks to see if it impacts some things that are going on with her. Was it much of a transition? When did you when did she start eating that way?

Heather 41:16
We've probably been eating that way for over a year now I would say. And we did it initially. She's always had gut issues. Like ever since I can remember. I mean, not as a young child, but in like, like, puberty, I would say is when it like, actually came to she doesn't go regularly at all. So she's always had gut issues. I never went the celiac crowd when she was younger. Because in my brain celiac is like diarrhea and you know, the opposite of her issues. So I never thought that. And then she brought it up. She's 19. So she was probably 17 or so. And she's like, I think I want to try gluten free and I was like okay, like it's pretty easy nowadays, you know? So we did and it helped a lot. And then she went and got the antibody test and it was positive. So now we're waiting on a scope. Okay. They want to scope her she was admitted for colitis to the hospital. Oh, I would say eight months ago or so. And then that sparked the that sparked the the endoscopy,

Scott Benner 42:41
okay. Hey, would you like there's what was that good? I'm sorry, finish your thought.

Heather 42:47
That was just the, you know, they she finally could get the referral and started believing us kind of thing. Yeah. So then the doctor her primary was like, Okay, I'll do the antibody tests that came back positive. So now we're waiting on the referral.

Scott Benner 43:01
I say can you talk a little bit more about the symptoms that led her to think gluten?

Heather 43:07
She had like really bad spasms in her stomach after she would eat, you know, a lot of pasta or bread or, or whatever. She, but constipation was a big one. She has to have fiber. Like, all the time. I mean, the girl takes more fiber than you know, my 90 year old grandma. Yeah. So about the pain was a big one bloat. She has bloating really, really bad. I mean, the girls, five, five and 100 pounds and she looks like she's three months pregnant after she eats a piece of toast. Okay, that was a big one. Sometimes she would get rashes. Like depending on the type of gluten, or like, I guess not the type of gluten but that the source that the gluten comes from, um, she would get like a rash. And I always thought it was like a topical thing like she would touch something or, you know, like dermatitis, not like actual allergy. So I would just treat it with Benadryl that would go away. And then but now, looking back, it was all gluten free forever.

Scott Benner 44:20
Any tingling. Oh, headaches, any tingling in her toes? Like Like, like they felt feel like they fall asleep or anything like that.

Heather 44:30
No one ever told me that one. headaches. Headaches are a big one. Yeah, the headaches are pretty crazy. They like almost instantly went away. And no still has like gut issues like she still has like issues going to the restroom. But no rashes. No more headaches, no more bloating. None of that.

Scott Benner 44:51
You ever try probiotics to see if that might help her a little? Yeah. No impact.

Heather 44:57
She's 19 So she has Are things whether or not she takes them is up to her.

Scott Benner 45:04
So what kinds of things does she eat now that she's gluten free? You just get like substitute foods or does she make a shift and how she was eating and did the rest of you do it along with her?

Heather 45:14
We did not know. gluten free pasta is so gross. The bread is not the same. So we did not I cook two things usually when I when we make pasta or bread or whatever, I'll make her you know a gluten free pasta and or a gluten free bread. Yeah, Tommy doesn't mind it, but Tommy eats everything. Yeah, I

Unknown Speaker 45:40
don't mean anything. Honestly. Like there's barely anything I don't like like a mushroom. I don't really like those onions. That's like that's

Scott Benner 45:49
just really think about. Yeah, just a couple of things. You want me? Yeah, I really do think we're going to actually do it here. I'll do it with

Heather 45:56
there's a lot there's a ton of stuff nowadays. Like rice, quinoa, potatoes. Those are now her like main starches. But the biggest thing for me is so much stuff that you don't even know. So we sauce, teriyaki sauce, mayonnaise. Like it's all has gluten, your, your laundry soap, your body wash really literally has Yes. That's the kind of stuff that like I had no idea. So my best friend, she adopted a little girl four years ago. And she was having similar symptoms to my daughter. The headaches, the rashes. She was really, really irritable. She's four. So I think she was just in pain and like, it came out as irritability. She had the diarrhea portion. She always said she had a headache always that her belly hurt. So and then she the kid is sick all the time. I mean, like, if there's anything she will get it 100 times over, she gets it. And so I told my best friend like it's autoimmune. There's something autoimmune going on with her. And finally we got the doctor to order. bloodwork comes back positive for celiac. So she had her endoscopy with kids, I guess it just goes faster. I don't know. So she already had her stuff. And she's like pretty severe with it. So it's been a it's been a big learning curve for everybody. But it's definitely helped them both to take the gluten out of it. We even I mean, we went as far as like, you can't use like wood cutting boards because it will hold the like spores of the gluten. So we have like, all plastic or metal or, you know, no wood utensils, no wood cutting boards, stuff

Scott Benner 48:00
like that. So she gets a little bit of contamination she can tell right away.

Heather 48:05
The bait the four year old. My daughter is not as sensitive. But the baby. Yeah, she I mean, like for St. Patrick's Day, she goes to daycare, and it's my best friend. I'm 25 years. So it's pretty much my sister. So we do dinners weekly together. And we did dinner that night. It was we did you know, St Patrick's Day dinner and stuff. And she came home and I was like, What did you eat at daycare? Like, why are you acting like such a little turd? And she you know, nothing like I didn't eat anything. And I'm like, Okay, well then come to find out. She ate the little like gold, chocolate like coins. It was like a thing at daycare for St. Patrick's Day. And we googled it. And sure enough, there was gluten in it. And the next morning, my best friend called she's like Brittany has a rash. And I was like, Oh, it obviously had gluten in it. She really just I mean little stuff.

Scott Benner 49:00
Yeah, most of the things you're talking about, like reflect back that Arden experiences that but her celiac testing comes back negative she doesn't have antibodies. And so we're thinking of just maybe getting a scope, which just seems drastic, but that's why we were thinking about maybe just cutting things out to see if there's a shift. And then it was

Heather 49:22
it took a week I would say at the most for them both to Yeah, for them both to be like Oh, wow. Okay. Okay. Like it was it was pretty, pretty apparent for the both of them. Gotcha that it was, you know, and like my my oldest like, we we kind of just did it. And I was like if if it works, it works like even if it's nothing if you if it's negative and if it makes you feel better. It's so easy. Yeah. Yeah, it's, I mean, it's hard, like going out to eat and stuff. That makes it hard. Because you have to have like, designated fryers for Are for fries, because you can't put chicken nuggets in the same fryers, fries. And you can't you know, it's going out makes it harder. But at home and we don't eat out a lot. I mean, we live in a pretty small town, there's like two good restaurants. So once we figured out those two, like I'm pretty good now to eat locally, but we eat at home most of the time, and it's easy at home.

Scott Benner 50:24
Okay. So I appreciate the time it took a while, you know, I appreciate you sharing that with me. That's a lot of good information. Actually, about.

Heather 50:32
There's a ton of stuff on Facebook, too. Yeah. Like we follow like celiac parents of celiac or something like that. And it's, there's so much information on there.

Scott Benner 50:43
Okay. All right. Thank you. What else? Is there anything we haven't talked about so far that you wanted to?

Heather 50:49
I'm not I didn't really have my biggest thing was just perspective. That's why I emailed you. Like, Tommy and I listened to one of your podcasts on the way somewhere, I don't know. And I looked at him and I was like, at least your diagnosis story wasn't traumatic, like that kid. And he looked at me, he said for you. He was like, What do you mean, it wasn't traumatic? And I was like, Well, I mean, it wasn't traumatic. Like, like, we figured it out. And he went to the hospital. And he goes, Yeah, but

Unknown Speaker 51:19
I thought I was gonna die.

Heather 51:21
Okay. Oh, wow. Okay, like, I guess that's something that, like, we're so wrapped up as parents that like, I've never asked him. I never asked him like, Do you have any, you know, how was it for, you know, unquote, traumatic, you know, things? Or does this affect you differently? Like, I don't know how it affects him to wear a pump all day long? I have no idea. I don't do it. You know, like, it's just stuff looking from, and especially like, he's 12. He's coming into his own and has his own thoughts and feelings on things that aren't exactly mine. And having that perspective of your kid, I think is a big deal. And I'm a little bit better now about like, where do you want your pump site? You know, do you want to do it? Do you want me to do it like giving him a little more? Second? No. Yeah, saying it because it wasn't a choice. I didn't ask him if he wanted a Dexcom. I didn't ask him what pump he wanted. He was nine. And I don't know, kind of doesn't work like that in our household. Like, I'm the parent, I make the decisions. And you just nod your head and go along with it, you know, so I didn't really I've never really gotten his perspective on it, which now is more that he said that to me.

Scott Benner 52:42
That's a nice growth moment for you. And I understand, look, I understand not giving a nine year old a ton of say and what happens with medical decisions. But but growing along with it, and it's and I'm glad he shared that with you that I mean that every story doesn't have to be I'm thinking of the big ones from the podcast, right? One boy had to take a speedboat ride while he was in DKA. in a foreign country, and that poor kid who was diagnosed on the transatlantic flight. Yeah, like stuff like that. Like it seems, you know, it's more like an action movie story about somebody's diagnosis. But yeah, just, you know, go into the hospital and be in there on your birthday. And that's, you know, you're nine years old. It's a big deal.

Heather 53:25
Yeah. And that's, you know, I didn't Yeah, I don't he was never in DKA. He was never sick. He was never right. It was, you know,

Scott Benner 53:32
seemed easy to you. To me, right. Yeah. Well, compared to what you see at work, right.

Heather 53:39
That too. Yeah. And I think being a nurse, I'm not the most compassionate person. I'm kinda like, Are you bleeding? No, die? No. Okay. Go, like, you're good. So I, you know, I kind of have that mindset about it. But, I mean, there were like, magic moments for me. I don't want to say traumatic, because, I mean, we're fine. But like, more and more, you know, the 27 blood sugar, and, like he, I think had forgotten about that until I mentioned it. You know, he's sitting here he's like, oh, yeah, right. So like, that obviously didn't seem like it caught me.

Scott Benner 54:15
Yeah, well, it's a different that's again, perspective, like he's low, he doesn't know what's happening. You're the one who's staring at the number and running over the scenarios in your head and the expectations of what may be about to happen next and that's frightening. You know,

Heather 54:31
yeah, when I I've seen a diabetic seizure way too many times. You know, and that's all I can think about. I think obviously at that point, he's just like, the world is spinning what is happening you know? Yeah, also,

Unknown Speaker 54:46
I'm like about the birthday think I at least I had a good birthday like, because we had a birthday party after because my mom was bad at everything there. Well, Chuck, I can have the cupcakes but that's fine. Yeah. cuz we had a game truck and all the stuff that I wanted. It was definitely cool. It was.

Scott Benner 55:07
Tommy, do you think you got a guilty birthday from your parents because they felt bad about your diabetes? Or was that about a regular birthday party?

Unknown Speaker 55:13
Definitely. Definitely not regular like crazy. I had like a bajillion friends over. It was so much fun. I got so much stuff. They had like a game truck and I wasn't really in the game for that much though.

Scott Benner 55:29
How they're looking at you paint yourself like a tough parent. And then you had you were like, how do you get the credit card? We're gonna make this boy yes circus for his birthday.

Heather 55:38
I will say I will say the game trip was already planned. That was already a done thing. We just moved it to the weekend after but he did get. My thing is like you want a birthday party or a big person. Unless it's like, a big birthday, you know, 1316 18 kind of thing. So he was like, I want a birthday party. Because he was nine. So it wasn't like a big one. Well, then, after all that I was like, Oh, he's getting everything.

Scott Benner 56:05
I'm gonna I'm gonna make you feel better and tell you that the year after the year after Arden was diagnosed, we put a waterslide in our backyard and inflatable. It might have been 50 feet.

Heather 56:16
Yeah. I don't know. It was hard. I felt so bad. We tried to we tried to make it good. You know, I had like the grandparents came and we opened presents and, you know, had a banner in the room. So everybody that walked in, knew it was his birthday. That kind of stuff. But I mean, that's never a fun. Never fun for a kid. This kid is so resilient though. It's crazy. I mean, he's, he's so go with the flow. And he's just easy. If it was my girls, I don't. I would still be in a corner crying. I

Scott Benner 56:47
think three years later, you don't think they would have handled as well or?

Heather 56:51
No, no, I don't think so. He I'm telling you is has it has never stopped him. He has never. It's never gotten him down or been sad, or I can't because of diabetes or nothing. I mean, and he he's on the soccer team. And the track team currently. Yeah. And he runs cross country in the beginning of the year. That kid is up at 6am Every, every day. He's at practice by seven he practices until 830. Goes to School from nine to four. He has practice after school of the other sport. from four to 530. Comes Home does his homework eats dinner. I mean, like, he's constantly going and and he's never He never complains. Never like, You got to change your site today. But okay, we got to change your decks. All right. There's I mean, it's, that's awesome. uses me for sure. Yeah, he's, yeah. And what, you know if I think he's growing, I think I just upped everything yesterday. But the last week or so he's been so hot. I mean, it's so high, so high. I mean, 181 60. But, um, and like, stubborn, you know, so stubborn. And so I'm like, Hey, tonight, we're gonna like kind of low carb ish. And then he can't eat carbs for breakfast. He eats at 630. We're out the door by 650. And he's at practice by seven. So I can't have insulin on board when he goes to practice. Oh, eat no carbs in the morning. And I mean, maybe 510 at the most. But I mean, nothing. He doesn't complain. He doesn't. Oh, I want this or Oh, why can't or you know, whatever.

Scott Benner 58:33
Has he always. Has he always been like that. Yeah.

Heather 58:36
Always. Yeah. Good. He isn't the like, easiest. It's well, he is now but in elementary school and stuff. He was a little stubborn for the teachers and stuff. But he's not now. He's not like that anymore. I think he's learned that consequences come with stubbornness. So he just kind of skim it in like that go. Yeah. But he's always just been really easygoing.

Scott Benner 59:06
I have a couple of minutes. Is it possible? Could you hand that to Tommy, can I talk to him for a couple minutes?

Heather 59:11
Yeah, yes. Cool. We're just gonna add air pods or switching. Alright, thank

Scott Benner 59:15
you. Thank you. Um, hey, man.

Unknown Speaker 59:22
Okay, there we go. Hello.

Scott Benner 59:23
Hey, can I ask you a couple of questions? Day to day. Do you think about diabetes with any kind of frequency or is it not something you're constantly thinking about?

Unknown Speaker 59:34
I honestly don't think about it enough. Like I feel like sometimes. I like totally 100% Forget everything. Well, not everything but sometimes I just straight up forget.

Scott Benner 59:47
You count on your mom to kind of keep you focused. Yeah. A lot. Yeah. All right. Are there times where you handle things on your own and then tell her about it or do you Oh, Always wait to confer with her before you do something.

Unknown Speaker 1:00:04
Like in school? Yes. But not usually sometimes I'll wait to confirm and sometimes I won't.

Scott Benner 1:00:11
Do you have any problems while you're doing any of your running? How do you manage your your blood sugar's like during soccer cross country and things like that.

Unknown Speaker 1:00:21
I just got to keep it steady. Like if I'm steady going into it or like, don't have any insulin on board, I'm good. No, I'm good, like 100% with running, I'm really good with all that type of stuff.

Scott Benner 1:00:32
Okay, so you don't have to eat before you run. You just make sure you don't have active insulin.

Unknown Speaker 1:00:38
Sometimes, but the biggest thing about it is just No, no insulin on board before like doing exercise.

Scott Benner 1:00:44
Gotcha. How, let me think, how do your friends interact with you about diabetes? Do they? Or do you not really talk about it with them either?

Unknown Speaker 1:00:54
Well, my friends just kind of just they know. And then that's, that's that some people will like, they'll bumped into me and feel my Dexcom or they'll see my, like, my pump string. They'll be like, what's that? And then I'll explain the whole thing. And they'll be like, Oh, that's cool. And then just kind of move on with their day.

Scott Benner 1:01:11
Yeah. Now you sound like you don't give it a ton of thought. Does it ever make you sad? Have you ever had a moment where you feel like I wish this wasn't happening? Or do you generally don't think about that way?

Unknown Speaker 1:01:24
No, never. Like, I honestly think it's just another roadblock for me to have to get through.

Scott Benner 1:01:31
Yeah, that's crazy. Are you? Are you good at school? Do you like do you like school? Or do you hate it?

Unknown Speaker 1:01:38
Oh, well, honestly. It's school. I mean, I don't really like it. But I have my friends there and stuff. So yeah, in elementary school, I hated it to death. But I'm better now. Like it's, it's all right.

Scott Benner 1:01:50
Right? How is it having an older and a younger sister?

Unknown Speaker 1:01:55
Tough. Like, I wish I had a brothers but from everyone else's perspective. They say brothers are terrible, but I don't believe them.

Scott Benner 1:02:02
You don't believe that? Does your do your sisters mother you do they treat you like they're your mom?

Unknown Speaker 1:02:07
No, my younger sister. She's just super super attitude. She just sees me in the family. Grumpy. My bigger sister. I love her. She's She's awesome. She's just I know her a lot, though. Like a lot a lot. Like I could just say words, like, Oh, you're so annoying.

Scott Benner 1:02:28
Don't worry, that'll go away. And like 10 more years, maybe. There's a long time. What else? Is there anything about diabetes that you would want people to know?

Unknown Speaker 1:02:42
That because a lot of people I know this isn't really something that you should be affected by. But I find it really annoying when people like Oh, so you just ate a whole bunch of sugar. And you just are like, super sugary and sweet. And that's why diabetes. Like that's like, what upsets me? I'm like, No, I didn't eat sugar. I was born with it. Like,

Scott Benner 1:03:04
do people say that to your face? Like, have you heard like, have people said that to you? Or is it something you hear kind of in media and social media?

Unknown Speaker 1:03:12
A lot of people know that some people are sensitive by that. So they're not really just like, open to being like, but some people and they're trying to like affect me or something they like I usually don't have diabetes, but that that's what gets me a lot. Like I'm like, dang,

Scott Benner 1:03:28
they just use it to pick on you when they need something.

Unknown Speaker 1:03:31
Yeah, when they don't have any comebacks they use that. Maybe Tommy,

Scott Benner 1:03:34
it's just thought you're so cool. They can't find anything else to make fun of maybe.

Unknown Speaker 1:03:40
Yeah, and I literally like sat in bed one time and just thought of comebacks to get from that one thing.

Scott Benner 1:03:49
Got yourself some pre recorded pre recorded comebacks in your mind. Now you're all set. But so but to go back for a second about that idea of like, Oh, you must have eaten too much sugar. Like is that like, has anybody said that to you? Or is it just the thing you hear sometimes that? Does that make sense? Like are you hearing it? Like, is it other people's concerns? Or other people saying, I hate it when this happens? Or is it actually happened to you?

Unknown Speaker 1:04:16
Um, like, not usually people, people, usually they don't know what type one is. They just like know, type two. So like, Oh, so you just ate sugar. It's not usual though. Because they know like, some people are sensitive about that stuff. Like I was saying earlier. Yeah.

Scott Benner 1:04:32
Do you? Are you ever afraid that people will think you have type two? And would that matter to you?

Unknown Speaker 1:04:38
It doesn't matter too much. But if they do say that I'll because like sometimes it annoys me. I'm like, Do I really look like them? ate too much sugar and stuff. I'm like, Well, no, not usually.

Scott Benner 1:04:52
Okay. All right. I appreciate that. Oh, well, I appreciate you answering my questions. Thanks for doing this did. Did you have a good time watching your mom get an interview? Yeah, yeah. How was she is a mom pretty good? She can't hear me right?

Unknown Speaker 1:05:04
Amazing. No, she can hear you. She's. She's awesome. Awesome.

Scott Benner 1:05:10
That's excellent, man. I'm really blessed. That was really nice to talk to you. Thanks for taking a second and jumping on.

Unknown Speaker 1:05:16
You're welcome. Thank you for talking to me. And I'm like, this isn't cool. Like, you know, like the one person I look up to like, it's super cool. Wait, I am. Yeah, like you, you. You're the person that I like. You taught my mom's so much stuff. And I'm literally talking. favorite person? Like it's super celebrity in

Heather 1:05:40
this house? Yeah.

Scott Benner 1:05:42
Well, Tommy, listen, if you ever want to come on the podcast and do your own episode, let me know. Okay. Oh, okay. All right. We'll find out we'll talk about like important things like, you know, girls and sports and stuff like that. Oh, okay. Well, very nice. Thank you so much for so it was really kind of you. I didn't expect you to say that. I really appreciate it. I I'm glad the podcast is. has been really good for your mom. And then for you too. I'm thrilled. Actually. That's wonderful to know.

Unknown Speaker 1:06:11
Yeah, it's it's nice to know that I'm seeing by someone that's literally like a god in this house.

Scott Benner 1:06:19
It's very strange. All you understand, Tommy. That's a weird thing for me to hear, right?

Heather 1:06:24
diabetes God,

Unknown Speaker 1:06:26
like yeah, not like a weird way. God just like, super cool. Super cool.

Scott Benner 1:06:32
My family's gonna make fun of me if they ever hear you say that. You know that right? Oh, gosh. All right, man. That's really wonderful. If you want to put your mind back and I'll say goodbye to her. Yeah, sure. Thanks so much. Hello. I didn't know I was gonna get called God or I would have talked to him a half an hour ago. I mean,

Heather 1:06:52
you know, I emailed you like, I don't know, probably a year ago and was like, I'm lost. I don't know what to do. I can't, you know, blah, blah. Pretty much all you told me it was more. Of course. I just needed someone I guess to tell me that. But I had you on speakerphone. And both of the little kids came running in and they were like, because I know your voice from the podcast. It was it was pretty funny. So strange. They came running in they're like, is that Scott? I was like, yes, it's it's hot.

Scott Benner 1:07:20
Well, I might one day get used to hearing that. But today is not that day. So I'm again, you know, obviously I'm I'm so happy for you guys and how things are going so well for you. And he seems like maybe the most level headed well adjusted 12 year old I've ever met in my life. So

Heather 1:07:35
yes, he's a pretty awesome kid.

Scott Benner 1:07:37
No kidding. All right. Well,

Heather 1:07:38
I don't know. I don't know what I did. I think it's more hidden but

Scott Benner 1:07:42
we'll just tried to find something to take credit for. And

Heather 1:07:45
I burst him I guess I can I'll take that one.

Scott Benner 1:07:47
Yeah, just just started the big things. Well, I thank you so much for taking the time to do this. I really appreciate

Heather 1:07:53
it. Of course. Thanks. Have a good day. You too.

Scott Benner 1:07:58
A huge thank you to one of today's sponsors, GE voc glucagon, find out more about Chivo Capo pen at GE Vogue glucagon.com Ford slash juicebox. you spell that GVOKEGL You see ag o n.com. Ford slash juice box. I'd also like to thank Heather and Tommy for coming on the show. And of course, US med to get started with us med call 888-721-1514. Or just go to my link us med.com forward slash juicebox. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

If you're enjoying the podcast, please share it with someone else who you think might also enjoy it, show them how to get into their podcast players who are into Spotify. And they hear just you know, click on this then you're following or you're subscribing depending on the app. These are the things you could tell these people. And please if you're listening but not subscribed and an audio app, oh goodness, could you please do that for me? Spotify, Apple podcast, Amazon music, the list goes on and on. Anywhere you get audio you can find the Juicebox Podcast last little bit if you're looking for a community around diabetes look no farther than Juicebox Podcast type one diabetes on Facebook. The group now has over 30,000 members and there is a conversation happening right now that pertains to you. I guarantee it Juicebox Podcast type one diabetes on Facebook

#784 Bold Beginnings: Insurance

Scott Benner 11/2/22 Scott Benner 11/2/22

#783 Survey Says

David runs T1DExchange and he has type 1.

Take the survey! <CLICK

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends, and welcome to episode 783 of the Juicebox Podcast.

David Walton is on the podcast today David is a type one who runs T one D exchange are always complaining. Things don't happen fast enough. Why don't they come up with a new adhesive quicker? Why don't they do this faster? How come they don't update that better? Alchemilla? Well, because you have to do research and it takes people to do research and people don't open themselves up to research. So David and I are going to talk about that today and discuss how you can help right from your sofa. I tell you, every, every episode like right here, I say, Hey, if you're a US resident who has type one diabetes, or you're a US resident, who is the caregiver type, you must have heard this by now. Go to T one D exchange.org. Forward slash juicebox. You join the registry, you complete the survey and you're finished. That's it. It takes like 10 minutes, and I say it and I say it and they say it. Okay, sorry about that. Nothing you hear that Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan. Anyway, this is a good conversation I'm going to explain why this is so important to research and and I hope you guys check it out. Give it a try. This show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn Find out more at G voc glucagon.com. Forward slash juicebox. Today's conversation is also sponsored by the Contour Next One blood glucose meter. This blood glucose meter is everything to me, it is the easiest to use easiest to carry most accurate blood glucose meter My daughter has ever held, used had in her purse. I've never seen one better is what I'm saying. Contour next one.com forward slash juicebox. There are links in the show notes of your podcast player and links at juicebox podcast.com. To contour G Vogue, T one D exchange and all the rest.

David Walton 2:19
Hi, this is Dave Walton. I'm the CEO of T windy exchange and have been in that role for the past three and a half years. I've worked at a number of device companies and diabetes since 2006. And in healthcare my entire career also have been living with type one since January 1996, while diagnosed while I was in graduate school, and have a 13 year old nephew with type one as well. So very focused and committed to working in the diabetes space and specifically trying to help improve the state of affairs for people living with type one.

Scott Benner 2:56
Well, thank you for coming back. i You were on episode Hold on a second. I will find it. I thought I had it. You were on a wow, Episode 330 April of 2020. This episode will be more like 800. So I've that I've been as busy as you have been, I think.

David Walton 3:16
Yeah. And that was right in the beginning of COVID when we spoke so it was definitely a unique time. And we're sure

Scott Benner 3:22
a lot a lot feels like it's changed since then. Well, you know, we'll give people a little bit of an overview of your of your life with type one. But I know we talked about it before. You said you were diagnosed in 96, which sticks in my head because that's the year I was married. And makes me feel like you've had diabetes a long time because I know I feel like I've been married a long time. Anyway, that I'm sure my wife won't hear that. diagnosed in grad school you said

David Walton 3:50
yes. After after one semester and I I literally had just begun dating my now wife. So we just hit 25 years so we've been almost the same trajectories you have. But literally it was within a week of us starting your relationship Yeah. that I got the symptoms first are presented themselves.

Scott Benner 4:16
So how did they hit your nation? Lucite

David Walton 4:20
telltale, yes, couldn't quench my thirst i i Actually chug this. At the time. I think there was the Magnum at 711 It was like at least 44 ounces of soda. And it was birch beer. I was so thirsty and I wasn't thinking that it was diabetes and sugar would we just exacerbate the issue. So that certainly wasn't wasn't helpful to my plight. But it was about a week of that going to the bathroom like 15 times a day just feeling totally different dropping 15 pounds, but when my vision got blurry in class, I couldn't read an overhead projector from sitting back in the in the room and I said Why doesn't the professor adjust this? And they said, What do you mean? It's perfectly fine? And I'm like, No, it's not like yes, it is. And that's, that's when I looked at someone else. Yeah, that or I better go to the Student Help and something's not right. Yeah.

Scott Benner 5:15
Well, you can't see things that Yeah. Although I interviewed somebody recently that said, They ignored their blurry vision for weeks. And I thought, Well, I must be a baby. If my vision I'd run right to the Yeah, wouldn't be

David Walton 5:29
day I walked in that afternoon after class to the student health because that blurry vision definitely threw me.

Scott Benner 5:34
Yeah. No, I imagine it would even mean you weren't that young. You were old enough to be able to think through your problem a little bit. I bet you if it would have happened when you were a freshman, you wouldn't know what to do. Maybe. Okay, so you've had diabetes quite a long time. I mean, that long. Did you start with regular an MPH? Yes, you did.

David Walton 5:55
As humans are the MPH I had a one touch or one touch to glucose meter was handed to me at the hot pen at that. At the at the hospital? And yeah, I was kind of off to the races. I was put on a dosing regimen that I realized years later wasn't necessarily the right one. And it was on that for probably 1213 years. Yeah. You think I was on that regimen for 10 years? Because I you know, I, I was doing okay, but not great. My agencies were always in the sevens, but I never could get below seven. And I'm like, Why? Why can I get bilobed And I wasn't testing a ton, maybe three to four times a day. And I started working at animus, the insulin pump company that j&j acquired and then later divested, or just exited the business. And I started reading about formulas for dosing and things for pumps, books and things to educate myself, because I've never worked in the industry of diabetes, I just had dealt with it myself. And I, you know, I learned about these rules, rule of 1800, the rule of 500, with your insulin to carb ratios, and all that, and I, I just realized, well, why am I on the ratios I'm at, they don't even come close to these formulas. So I just made the change that day at work. And so let's see what happens and my blood sugar instantly got better. And my next day when See, I came in, and I had a six, eight, or a six, nine and my endos. Like, what, Hey, what did you do? I said, I, I changed my dosing to one that matches the formulas. He just gave me this look

Scott Benner 7:51
like, Oh, those.

David Walton 7:55
But you know, I'd seen a couple different endocrinologist, one in a prominent center out west and other who worked for an insulin company, and neither of them brought it up. Yeah, nor third one. So this was like, my third endocrinologist that I because I've moved around. So it's, it was definitely a lesson in that, you know, there are certain reasons like if you're not creating, if you don't present certain problems or issues, an endocrinologist may not focus on something. And if I were having a lot of lows, or if I had a much higher rate when see, maybe they would have looked at that, but because I was like, Yeah, you're kind of doing okay, so I was in that little middle zone where it just, it wasn't really worth. Yeah, well, they, you know, because I have to believe that they were knowledgeable of these dosing rules, but who knows, maybe, maybe not. But one would think well, the

Scott Benner 8:49
story points out that, I mean, why research is so important, because basically, you read research that told you, oh, I could be doing this differently. And the research that was probably common at that time for what a good a one C was, was telling the doctors that you were okay. So you weren't somebody to fiddle with. Because the seven Wow, that's terrific. Why? Because the ADA says, that's good. And so that, you know, so they're kind of doctoring to these rules that comes from research, and now the research gets better and better and, right, the American diabetes Association lowers that target, you know, when I think that's what the doctors work off of, they, you know, whatever, whatever ADA says they're like, Okay, well, that's what we tell people.

David Walton 9:32
Yeah, no, I certainly the the ADA standards of care are that they update every year that they're extremely important and but I wasn't actually hitting the target. I was close, but I might agencies were ranging between seven two and eight. They were in like mid mid sevens kind of thing. So, but it wasn't, you know, a nine or a 10. So what and I wasn't having a lot of lows. So but you know, the The old dosing logic, you know, the one unit for 15 grams of carbs or one unit to correct 25 milligrams per deciliter. That's what they had me on that ratio, which apparently year many years ago was a common thing to start people on. I don't know if they often move them off of it, or what I haven't really looked into that. But I know, I've had educators, diabetes, care and education specialists, now we call them, you know, comment on how earlier in their career, that's what they dealt with a lot, they use that that ratio, but getting more data and research and people looking at these topics, they realized, and particularly with pumps, where you're gathering the information, you can track and analyze it that, that's, that's not right, and you can look at someone's total daily dose and, and their weight, their body weight, and, you know, there tend to be these averages and ranges that that work. And that's not what I was on. So again, I switched it to a one to 10 from one to 15. And I switched it to one to 35, from one to 20 where it was at one to 25 So I was constantly I was under dosing for my food, and then overcorrecting and I was just in this little yo yo thing, and it was, it was enough, it was keeping the, you know, getting the ultimately back to a point in between meals, or maybe I was getting closer to closer to where things should have been. But it wasn't ideal by any stretch. So that was that was, you know, definitely a big aha, because I just started using a pump the year before you you are collecting this data every day. So you can analyze it, or someone can analyze it and help figure that out. Well, especially if

Scott Benner 11:49
people can't see you, but you're, you're a big person to like you're tall and you're strong and like one to 15 seems, you know, I mean, Arden is a woman and you know, gets a period and has a bunch of hormones going on. But she would laugh at that if I if I covered art and one for 15 I might as well not give her insulin. And you could pick it up with her across the street is my point. So it's, it's just really, it's interesting how they're like, Well, this is the standard, give him that one. And then no one ever goes back and looks at it again. That's the fascinating part is that you turn it on, it's like turning the heat on the ad. And then everyone's always hot, and no one remembers to go back to the thermostat and go, Oh, we could probably adjust this. Here's just the it's common, honestly, through the years.

David Walton 12:35
But you know, situations like like that, you know, we t when the exchange, you know, we call ourselves a real world, you know, evidence organization, like we gather information from people in the real world, not not in kind of these artificial clinical study environments that just don't aren't the way people typically then lead live their lives on an ongoing basis. And, you know, we're trying to gain insights and understand things about what's happening when people use products out in the real world. We also help recruit for study clinical studies that people are doing, because we have to get these products out faster. I mean, it is amazing when you read how many times that study can't find people that way behind on enrollment. And I've actually had kind of strong discussions with companies like why do you accept this, if you work with some sites, some clinical sites that aren't recruiting fast enough, like we've got almost we've got 20,000 People who have registered with 20 exchange to be a part of research and to participate, we can help find people and send them to your site or, you know, go to a link virtually, like we can help speed these things up. And then so the faster the products get to market great. But then there's this whole second phase of learning and knowledge about then what happens when people use them in the real world and do the things they're going to do because they're also living life. And, you know, we're trying to get devices connected into our registry so we can see people CGM information and see how it relates to the others information they provide the surveys they respond to, and that kind of, I think there are a lot of things that can glean from that, you know, we did a big project with vertex which was presented at some medical meetings, which is why I'm naming them and talking about it. You know, they're working on this really interesting beta cell replacement therapy, which I think is our online community is thrilled to hear about and very excited about the prospects long term. You know, for that, that kind of a solution there are other companies working on it too, but you know, they wanted to understand severe hypo glycemia and impaired hypo awareness and, and how often is it happening? How often do people need assistance with their severe high bone what were the circumstances around it and We looked at CGM data for 1000 people on top of you know, a total of 2000 survey responses about different aspects of that. So we could really contextualize it and they had questions they wanted to understand because their product and the study that they're doing is for people who have this severe you know, hypo, an impaired hypo awareness. So it's, it's, you know, it's extremely important to get more people in to research it is going to slow we could absolutely get new products out faster. And I mean, I'm talking the entire industry, new new sensors, new pumps. You know, I, we have these conversations like every week with a company that's, you know, enrollment is slower than we'd like, you know, every time ticularly if they're recruiting children, as well.

Scott Benner 15:56
I have a quick ad break here and then we're gonna get right back to Dave G voc hypo pan has no visible needle, and is a pre mixed auto injector of glucagon for treatment of very low blood sugar. In adults and kids with diabetes ages two and above. Find out more go to G vo glucagon.com forward slash juicebox G voc shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G voc glucagon.com/risk. I'm going to read you a review that comes right from contour next one.com forward slash juice box. Same product works well. And half the price of what I pay after insurance at the pharmacy will definitely buy again. Amazing deal cheaper for me than buying through insurance. I got 50 more strips for about the same price expiration dates were good. Plus they arrived very quickly. Very happy with this purchase. Contour next one.com forward slash juice box we're talking about the test strips that work in the Contour Next One blood glucose meter. Head over there now and find out what I'm talking about. Do you really know what your test strips cost you because it may be cheaper to buy contour next test strips over the counter without a prescription. Again, you could learn about this at contour next one.com forward slash juicebox here's why this is important. I don't care if you have the latest CGM Dexcom G six libre three Dexcom G seven, whatever you have. That's terrific and it's amazing. You still need a good accurate blood glucose meter. That's why I'm asking you to look into the Contour Next One. This episode might be sponsored by them. But my daughter's every day is supported by the Contour Next One blood glucose meter and is the one she carries and uses daily contour next one.com forward slash juice box it is small, easy to read, accurate and easy to carry. There is nothing more unique. This whole business about the test strips maybe being cheaper and everything that's a bonus look into that on your own but get the damn meter it's freaking terrific. Contour next.com forward slash juicebox G vo glucagon.com forward slash fuse box links in the show notes links at juicebox podcast.com. And even though they are not a sponsor of the program, I do benefit when you go to T one D exchange.org forward slash juice box. But I think you can hear in this episode, that I'm really just trying to get everybody behind. Behind the movement that helps bring where we are with diabetes forward. We need you. We need you to fill out the survey. That's it. Just Just keep listening and Dave explains it again. I give up it is so hard to get people to do stuff like this. I know it seems like it's a big deal, but it's not t one D exchange.org forward slash juicebox join the registry, fill out the survey and just like that you've helped you've helped move things forward. Alright, now let's get back to Dave and thank you for listening to the ads I really appreciate it please use my legs if you're gonna buy something

Yeah, well so it's it's to flip your life around and what you do for a living and kind of think about it from somebody else's perspective. When people say well, I don't understand like why is this only recommended for children six and older? It's because they couldn't do a study for children six and under. It takes longer. Well don't worry, we're getting to it. We're getting to under two we're getting it's because people don't do the studies and that's the only way this stuff happens. And I Dave I do my part on every one of my episodes when opens up, I'm like, go to T one day exchange.org forward slash juice, but I just keep putting, it's, I mean, a lot of people listen to this podcast. And still I don't push that many. Like, like, you get people to convert you, at least in my heart. I'm sure you guys are happy with how many people come through the podcast. But for me, I know the number you told me when we met, like, we'd like to add this many people. And it's a lot. And then you I don't know, I've become Ultra aware of how difficult the job is to get people involved in, in research. And I mean, I understand it from their perspective. But it's just I mean, you're not asking people to go to a site, you're not asking them to, you know, cut off a finger to see if it grows back like, right, you're like, take a survey, can you just take a survey? You know, let's

David Walton 20:46
take a 10 to 15 minute survey, right? And then from there, we will follow up with other opportunities. But that's, you know, if it doesn't fit, if you don't, you're too busy at the time, what have you, and it could just be another online survey? Or it could be, Hey, would you be willing to connect your Dexcom, your clarity account and just you connect the login information, we have a simple little couple of fields you enter in and then boom, it's done within a couple of minutes. And, you know, we're going to have, we're going to have another few 1000 People do that in the next six months. That's cool. Yeah. So, you know, research. And I've, I believe that most people just have this ambiguous view, and they hear research, they think I have to go drive somewhere and deal with hassle and fill up forms and give blood and do this and the other. And there are times where there might be a study that is fairly intensive with a new treatment, particularly if it's something being put inside your body. But there are other times where it's just it's not what you think it's not that big a lift, you know, and oftentimes, there's compensation to account for if you have to take time out and go travel or go do this or that. So, you know, it's we tried to spend a bit of time educating people that research can mean many things. But it can also it can be just what are your attitudes about doing something and so that these companies that are working on things understand, using your product may be more burdensome than you think or going to get screened for, or have your immediate relatives screen for auto antibodies. People don't really understand where to go or how to do it as an interesting program with T ones attack that certainly they should look into for that. But it is it is something that we spend a lot of time trying to de-mystify it and explain to people here is this is what research is, here's why it's important. And there is no doubt we can all pitch in and help make things happen faster. And your point about the six year olds or what have you. Yeah, you know that these companies start with the adults usually, and then they work their way down. You know, there are additional rules and safety measures when you're involving children in any kind of research. And so, you know, understandably so it's something that you have to be very have lots of safety data and really understand even before you then go to the official study to get the indication for that. And sometimes it happens because there are doctors out there that are willing from what they've understand of the research that exists. They're willing to try it out on some of the patients. And then you get that, you know, some of that volume of information builds, you know, just mean that happened with CGM and dosing. Right. It used to be adjunctive therapy, but so many people were dosing and not doing finger sticks and just going off their CGM. And some of that information that was gathered at 20 Exchange help with that years ago. Some of that information is what ultimately kind of led to the label change so that you are, you know, permitted to dose your insulin off of your CGM bacteria enough and yeah, so in that replace BG study they did. So

Scott Benner 24:11
it's so you're saying that in that exam, in that example, people had CGM, and they were like, well, I This thing's accurate. Most of the time, I'm just gonna, I don't feel like testing before I eat i dose and then enough people do that. And they gather enough information that it becomes its own study, the fact that it's not even on purpose, then suddenly they go, Look, this is what people are doing. And it's working. And then you are able to show that to the FDA and then move forward. And the company, by the way, who can say look our products doing what we expected it to do. This is amazing. I don't know. I mean, for me, I would I think I would take some pride if 10 years from now, I looked up and saw I don't know a two year old kid with diabetes wearing a the G 97 sensor, whatever. It'll be 10 years from now. Right. And and this kid is smiling and laughing and living his life and the mother doesn't look like she's about ready to pull her hair out of her head or, you know, the parents aren't arguing their lives are comfortable, I would think, well, I did that, like, you know, on some level, my participation helped us get to this place. And I do take. But I think when I think by I try to imagine why people wouldn't do this stuff. It is my inclination that it's what you said earlier is that they're, they're afraid that they're going to be asked to do something that they don't want to do. And I don't have enough time in a 32nd spot to explain to them like, Look, if you get an email, and you don't want to do it, just don't do it. Like the length team. Right? Yeah. Like, it's just, you know, absolutely,

David Walton 25:42
absolutely. And I got to do want to make the distinction of, you know, participating in research. And that's our goal, we want people to join the, the the to end exchange registry, and start that it's a very simple lift to be able to contribute. And, you know, the more people we have, then when unique situations come up, and someone says, We really, do you guys have people that have had transplants, we want to look at this particular issue, and it's hard to find these people. Well, yeah, we happen to have 78 people that have had either kidney or pancreas transplant, and oh, what about this, what about other transplants, and we can be the law of big numbers, just if it's a very small percentage, but we get our numbers up, we can find we have people that will, will meet some of those criteria. So we're able to help people, you know, and help recruit for some studies that are very difficult, but I do under and we should definitely I should emphasize, you know, their products are labeled or indicated for a specific purpose. And absolutely, people should, you know, we're positive stick to what that is, you know, but if their doctor is talking to them, or they're, they're looking at something that there's a lot of safety information out there, it's just not officially in the label, like, well, then, you know, there might be an opportunity to, you know, talk to a clinician about doing that, or what have you. I was working in industry, I was doing lots of testing of sensors and checking my blood sugar and looking at this data, and I knew how the sensor performed with me individually. Some people, the sensors can be much more inaccurate. Yeah. And earlier versions definitely were less accurate. So, you know, if people were hesitant to dose insulin until it was absolutely in the label, and their doctor said, Yes, I will absolutely understand that. But I was in the center of information gathering and seeing this and I, I knew a lot of other people that were and and then I was monitoring what was happening. And I was I was constantly vigilant, like, Oh, if I see my blood sugar dropping, and maybe maybe the sensor was reading higher than my blood sugar really was and then I gave it too much insulin. And so I was always focused on that. And you know that. So for me, it was something I was, you know, willing to do, because I felt like I understood those risks, and I could mitigate anything that happened. But

Scott Benner 27:59
I listen, I wouldn't do anything blindly because anybody said it was okay. Arden's been sick away at college this week. And we were fighting high blood sugars. And I said, I texted her and I said, Look, we're going to have to make like a big Bolus here. You got to test first. Like, I'm not just going to, I'm just not going to go off the CGM. Like I like I'd want I want some. You know, I want some I want other numbers. Like, let me let me say, so she tested CGM was mean, she was in the low too hot. She was like around 220 or so I think the CGM had her at like 224. And she tested at like 218 to 15. Something like that says like, Okay, let's do it. Like, let's go for it. But I don't know. Like the, the longer you have diabetes, the more you recognize the moments when you just want to like, let me just let me just check here. Like, you know, like, let me make sure I and your point about it just doesn't work for somebody, some people. CGM, a Dexcom, specifically works terrific for Arden. And I'll have people contact me and say I don't understand how you like how can you use an algorithm? My kids CGM has never anywhere close to what their blood sugar is. And, you know, you respond back you say, Look, do you have a an accurate meter, maybe you're checking with a meter. That's not accurate? Maybe the CGM is more accurate than the meter is maybe your kids not hydrated, maybe? Like I don't know. I can't tell you what the reasons are. But there are checklists you can go through to kind of get yourself better. And then at the end, I have met people were just like, it just doesn't work for me. And I've asked, I mean, I've asked people at Dexcom about and they'll say, Yeah, I mean, sometimes it just doesn't work for some people. We don't know why. You know, so you got to be careful and do what works for you. You can't just say, Oh, the box says it's okay. I'll do it. You know, I mean, I don't know.

David Walton 29:47
And the more I've worked in kind of the industry, I've worked for startups, CGM companies, where I was wearing SIX sensors at a time and then checking every 15 to 30 minutes on my fingers and all that and You realize the variability that exists both within one person, but more importantly, between people in the inter and intra variability, like it's people, there are just, there's a lot of different operating environments out there for the human, the human beings, and, you know, these, these products work really well, and a lot of people that, that, you know, there are some people that just some people they won't see reads lower for a certain average glucose than someone else's. And that's really come out a lot in the last several years where you can have these ranges in a onesie with the same average glucose, and just the way that hemoglobin and the way red blood cells work, and certain people, you know, you know, African Americans have an agency that's 3.3%, higher than whites would be with the same exact, you know, glucose on average. Really? Yeah, because of the way that, you know, that was all developed. And so, you know, that's another aspect that we, you know, we're focused more on now is, can we help with diversity in study recruiting, because people are slow with recruiting in general. And they tend to skew towards, you know, white and female, and a lot of different studies, I've seen NIH data for over 20 years, you know, our own registry, you know, historically, you've had more participation from from that group, and not as much, you know, from, you know, different groups of people of color. So, we're trying to work on what can we do to, to get the word out to more people to explain ourselves better, and what what they're really participating in, when they join us and work, you know, we've, we've been working with some great, you know, influencers out there on social media, who, you know, are good about getting the word out, and, and, you know, messaging in the right way, where it's relevant. So that's been, you know, positive, but we have, we have a lot of work to do. Still, we're still not where we want to be to be completely representative of the type one population in the US. Well,

Scott Benner 32:01
you mentioned the law of big numbers earlier. And I imagine that that's probably why this podcast does, well, driving people back to T one D exchange, because I have a larger group of people that I'm reaching to, I've learned, just getting people to click on things, you know, for anything for ads for my own site, you know, for content that I've made, that I know helps people, it feels like, you've got to reach 1000 people to get 100 people to look up and that gets 10 people to click, and that makes one person say yes, it's it's a, it's hard. It's hard work.

David Walton 32:35
Getting people to stop what they're doing and do what you want them to do, because there's a greater purpose you're solving for. Yeah, it's not easy. And I know, our marketing team is, you know, in our registry team are doing a good job. And part of it is working with people like you to get out to different audiences, and people who are credible and have a relationship with with a group of people. Like, that's important and important. That's very important, you know, kind of tactic for us to get more people to participate. It's been, it's been pretty successful. And we, you know, we add over 100 people a week into the registry. And that's, you know, because we've got, it's not just, you know, we're empowering, others are connecting with others who are able to reach out to all these other people. So that's definitely something

Scott Benner 33:23
well, I'll share something with you that it's a little backroom, but I don't mind people hearing it. I've learned using tea, Wendy exchange, specifically as an example. And maybe, maybe this bleeds into other stuff, but I can explain it. I can say, look, it's easy, you know, hey, here's some people have done it in the past. Like, I've gotten feedback from people, I've gotten photos, people like, Hey, I'm at the airport, I'm going to do this thing I'm on I'm on a Dexcom. I'm testing Dexcom adhesives, right? There's something people complain about all the time this girl is, is doing it, she's wearing a bunch of I saw a bunch of G sevens on her arm, and she was flying somewhere. And she was super excited. And they compensated or, and I share that with people thinking, well, there's something people are passionate about, like adhesives, and nothing but one. And it's interesting. I can say here, because there's no ad here. But I'm not allowed to tell them that. Like specifically, like I can't incentivize people to do a thing. Like, can you explain that? Like, why can't influencers like there's a law, but explain it to me so that they can understand it? Do you know what I'm talking about?

David Walton 34:30
Well, I mean, when you're involved in kind of, and I think there's a difference between the study versus there are different rules around a study and what you're allowed to compensate for, versus, you know, a product that's out there. And, you know, the whole notion of if a company is, you know, they have their own health care compliance rules about what do they believe based on laws is an acceptable way to compensate people who might be doing something and if you end up you're paying people to you As a product, that there are all kinds of rules that can come into that. It same thing like even with copay coverage and other things, there are all these rules and and rules, if someone's in a federal health insurance or you know, different Medicaid, you know, we would have these programs where Oh, you could, you could upgrade to the next pump, when I worked at anatomist always had these little asterisks with all of the little caveats. And if someone was with DOD, or the VA, or a state, Medicaid or Medicare, because the government has to get best price and this and that, and you're paying, you know, there are all these considerations like that, right? Companies need to be mindful of so they may, you know, I don't know if your example was around like a research study, versus actually, like, using a product,

Scott Benner 35:53
I had an idea. I know, you know, this, because we've talked about before, but I had an idea a year or so ago, when I came to, to, to Debbie, and Dave, and I said, I want to do a drawing, I said, I'm going to we'll pick a number, whatever a reasonable number is. And then when this many people get on the on the exchange, will, I will drop them all into a drawing, and I'm gonna go live with one of them for a week and help them with their diabetes. And your lawyers were like, no, no, you are not doing that. And so, but my bigger point was, is that when people learn, like, I have no trouble saying it, like, every time someone signs up to the registry, I make money. It's not like, you know, it's not like go buy a Ferrari money, but it's money. And so when people learn that, that drives them to sign up. And that is the thing that I started talking about that, that surprised the heck out of me, which was, they weren't even doing it. For all the great reasons that I laid out. They were trying to help me like they appreciated the podcast, and I call if Scott's gonna get Oh, good, we'll do it for Scott. And I thought, I mean, that just first of all, it floored me personally, I didn't expect it and it was lovely. But I thought, how are you supposed to get the average person who's not connected to a podcast host or you know, somebody on Instagram, they love that they they can make the leap in their head, you know, this must help him if I do this. I'll do it. It's I don't know, your job seems really difficult to me that that part of it is my point, honestly.

David Walton 37:24
Yeah. Well, I suspect the lawyers may have been more concerned about you living with someone for a week and like,

Scott Benner 37:33
listen, I was worried about that. But, but no, it's just, it's just interesting that you, you know, like, I'll say, like, Oh, can I say this? Can I say that? You know, trying to get people interested? Like, No, don't say that. Don't say that. And it's, and I've noticed that too, with other other relationships I have. Like, I'm getting ready to do a thing for xirrus. Right now I'm getting ready to do an episode Jenny and I are gonna do talking about how to use glucagon. And that's something that was my idea. I went to them. And I said, I don't think people understand how to use their glucagon. I don't think they understand when to use it. I think that we have an opportunity here to talk to a lot of people and help them. And so they agreed and they wanted to do it. But then once you do with the meetings, and the you know, you can't promise things to people, like there's so many laws, or it's very, it's it almost makes it hard just to talk like a person. So you can say to somebody, Hey, glucagon is important. Here's why. You know, it's tough, you know? Well,

David Walton 38:32
I mean, just watch the evening news or the morning news or any news and listen to a quote unquote, patient with rheumatoid arthritis say, you know, for my moderate to severe rheumatoid arthritis, I like to use x. Is that really how people talk really, that? They have to put that in? Because the indication is for moderate to severe rheumatoid arthritis? Probably not for me, you know, I don't know the classifications fully, but that obviously is like what their official indication is, there's characters categories and technical definitions there. So you know, I understand like, you have the FDA gives you you have claims and you have things you're able to say because there's, there's evidence for it. You've, you've provided substantiation, and so you have to stick to the script, you can't go and make claims that are off. I mean, we had some people tell us an animus someone made a presentation and they had Yoda wearing an insulin pump. And the regulatory was not happy with that at all. Because our pump isn't indicated for Yoda to wear. It's only when he met the age requirement, didn't they? Oh, wait, no, yeah, it's like literally, so someone had to take that off of their PowerPoint

Scott Benner 39:52
and internal an internal PowerPoint right. Not even like something that the public was seeing.

David Walton 39:57
Yeah, well, that I think this person They've been showing it to others.

Scott Benner 40:02
Okay, but isn't that that's, that's a great. That's a great example of where common sense intersects those rules because there's no one who looks at that and thinks, oh, well, Yoda is real, and obviously has diabetes and wears an insulin pump. But it's, it's fascinating. But I guess that could be an enticement to Right. Like, that's how it could be looked at, like if a child saw that they could be enticed to want to use that. I mean, who knows who's thinking that way? But that's, anyway, all these angles

David Walton 40:32
that I appreciate I'm, I feel fortunate that I spent as much time in industry as I did, you know, I was at j&j. 11 years, and then a number of smaller companies, device companies agamatrix. And understanding the realities of what rules have to be followed what constraints they have, I had to operate under, it does give me an appreciation for like why industry does certain things. It doesn't mean I, I think everything they do is right, and I agree with it all. But I certainly understand this is, this is probably why they're doing it because I remember the conversations I had with quality with regulatory with legal medical affairs. So it's, there are a number of things that you need to get, I'd love to see improved. But I also understand some of the realities, that can't just happen overnight. But the one of the areas we can is gather this information about what is actually happening out there in the real world and gather the information, conduct research, and we have research and data scientists on staff with PhDs who are very good at what they do. And we're able to do a lot of that, those type of things. But we also just literally, forward study opportunities to our, our registered participants, and try to encourage them to participate. And everyone else is doing all the heavy lifting on the study, we help get as many people to look at that opportunity and try to sign up for it. So you know, you mentioned adhesive, we've done a couple of things. For a research organization, looking at adhesives for a CGM company, we've got another company now that wants to do a survey of people who use a certain patch palm to understand how, how satisfied are people with their adhesive. Because this other company wants to use that adhesive as the litmus test of like, maybe we should be targeting that. So there's a lot of things we can do. Because we have 1000s of people who use this, you know, hundreds of people that use that, and we're able to go target them and get a certain percentage to respond. And, you know, we there's often some, some compensation to participate in, in that type of thing. Because you know, it's people's time and we understand like, you have to, yeah, there's a fair market value, you have to pay people for their time, you should pay people for their time, if you you want to get as much participation as possible. Not everyone, you know, continues to stop doing what they're doing to go help you out because you need something. And that's, that's a mantra that, you know,

Scott Benner 43:10
we've tried to live by. Yeah, to support the people who are supporting the work. Yeah, yeah. Well, it's, it's so you could do this with a clinical study. This could be industry and this could be academic, right? Like you support all those three ideas.

David Walton 43:26
Yeah, we've had researchers out at a university say, hey, we like during COVID I want to do a survey on telemedicine users and see kind of what's, what their experiences have they done it and what type of visit did they do it with? But this was back in like, late 2020. So we did and we were able, very reasonably to recruit. Had it was it was maybe a couple 1000 people to who completed this information for this Dr. Krause and at UC Davis. And I think she just published on that work recently. But you know, sometimes it could be literally a five minute survey for on behalf of someone, some researcher who has who's really trying to nail down something and understand what's going on, or gain insights in a particular topic. So we'll work with companies. You know, we will work with an academic center that isn't recruiting as many people as they want from their patient pool. So we'll say Well, here's how many people we have in within an hour driving distance of your location, we could send out something to those people. And we did that for someone who had like a novel biologic for newly diagnosed to try and help preserve whatever beta cell function was left by halting the immune reaction. The goal really is to move before the symptoms present move earlier when people are kind of in those stage one and stage two of of type one like before the symptom is present themselves, but you are having that, you know, you're going down that path. And so that's something that we're definitely getting more involved with. But they're in their accompanies, and, you know, prevention bio may get approval here in four weeks for their their product. And something

Scott Benner 45:20
must be happening with that, Dave, because they're on my schedule pretty soon, so they must be pretty hopeful. Yeah.

David Walton 45:26
You know, the FDA has a date where they have their, quote, unquote, required to give a decision. I think it's November 17. Yeah, literally, it's, it's four weeks from yesterday. I think that it's my maths, right. Yeah, that's that there's, that's when the producer date they call it where they should be hearing about whether or not you know, they obtained the regulatory clearance to market that tip lism AB.

Scott Benner 45:57
They've been on before. And it was just, like, mind blowing, like what they were trying to accomplish in just the even the thinking outside of the box, because my daughter was diagnosed after getting hand Foot Mouth. And the way he was talking about maybe we could slow down like, like, put aside what we're doing here for a second. Like, what if we just inoculated people against Coxsackie virus? And it because if Coxsackie starting that many people down the road of type one, I thought, My gosh, like, is it possible that my two year old got Coxsackie? Which, of course, you know, she obviously had markers for type one, and it kicked the whole thing off. But could she have lived 10 more years without getting sick? And that way or 20 more years? Or like, you know, really?

David Walton 46:47
Yeah, who knows? Like I, a couple of months before I was diagnosed, I had a nasty stomach bug. I don't know exactly what it was, I just I was green. And like, is the only day of school I missed because of sickness and two years in grad school. And, you know, I thought it was bad Taco Bell I had the night before and in West Philadelphia. And that's what I just thought. And then as I started working in the diabetes field, I started reading about, you know, enterovirus coxsackievirus. That the how often it's associated with it, and and even some of the research more lately, where they're saying like, they're seeing it in the pancreas is of 70 or 80% of the people who have type one, when they've looked at tissues. So it's at diagnosis. So it's, I think, it seems like there's growing evidence about that relationship. And you could see very different approaches to public health, you know, because of something like that. Yeah. Well, and yeah,

Scott Benner 47:52
I'll tell you, the reason I brought it up, just to be transparent is because they obviously can't, there's some companies, you're not naming by name on purpose, and I hear you kind of like talking around it artfully. But anyone who's listening who's aware of the diabetes, space, all the big things that are happening, and all the things that you want to end exchanges in is generally speaking involved in. So take the damn survey, like that's just go it seriously. 10 minutes, I took the survey for Arden back when she was a minor. And then she takes she had to take it as a, you know, when she went over 18, she took it again, first job and yeah, yeah. And it's just it's not difficult. I did not run into one question where I thought, Oh, I don't know the answer to this. And they're like, now my data is helping somebody. And it's and moving us towards all these things that everybody wants. And you know, you were really passionate about it in the beginning talking about that things could happen faster, and they could happen probably better. You just, you know, this is the process. And we don't have enough people to do the studies.

David Walton 48:55
Yeah. And where, you know, where I've had this kind of, I would say puzzling discussions with a couple of companies where they're then telling their sites, hey, we want you to work with T Wendy exchange. And some of the sites say yes, and then there are a couple of sites that say, Well, no, we like to work with our own patients. We don't want outside patients coming into our clinical study, they want to deal with patients that have been going to see them they know who they are, they have their information in the electronic medical record. They know there'll be a good study subject. And I'm like, this is the problem, right? If we keep doing things the same way, we're gonna get the same results that and those results aren't great. Right? JDRF had some stat about, you know, how many studies fail because they can't recruit enough subjects or in fast enough time? Because every day, you know, it costs money to put on a study and you're, it's just, it's an expensive proposition. And then if you're, you know, you're just dragging that on. It's then there's competition. It's just very difficult. So I said, Why do you allow that? You're developing a product you're trying to get in the hands of patients, the patients want it. And you're going to allow someone's attitude of, no, I don't want to have outside patients I need to have, like, the people that are in our registry, are people with type one who have an interest in research, you've already gotten an enriched pool. So one of the companies we're talking to absolutely agrees with that. And so they're circling back talking to some of these sites, and they're going to be a little more insistent. And if I were in their shoes, that's exactly what I would do. What Why are we tolerating this, let's move forward, let's get things out faster. And then once products get out faster, it's out when they're out in the real world, then you learn new things and new opportunities. When I worked in pharmaceuticals at j&j, that was like, the number one mantra was, it's impossible to forecast how well a product will do in the market. With a certain amount of accuracy, there's just way too many variables. So we would do have all this like science and approaches and analogues. And we had a product that ended up being like three or $4 billion, that they had forecasted to be 50 million. Because once they got out there, then some doctors started using it for something else. And they realized, Oh, my God, look at this, this actually helps it. So and that spawns something else. And just when you get something in the hands of people, and clinicians using it and recommending it, you may learn something, even just how to use it more effectively, that can then reinforce the whole thing. So it's,

Scott Benner 51:32
I think, also that data coming back to the companies, once they have something on the market helps them understand how it's being used, or where it's falling short. And it allows them to, to put more resources towards bettering it or fixing it or updating it, like you're going on Twitter and being like this don't work that I mean, the company is gonna be like, alright, like, you know, like, what am I gonna do with that? You know, it's,

David Walton 51:53
it's one of the benefits of actually all these products now being connected products with Bluetooth, or what have you, and then sending data up to the cloud. Now the companies are getting to see a more direct line of sight about what's happening with some aspect of the patient and their data that, you know, it may be blinded, but they know that they can see things happening up there, like, wow, look, we pull all this data together, we can see XYZ is occurring. And, you know, there's some really powerful information that the companies now are seeing for their own people. We're trying to get all connected products like trying to link that data. And so we can do comparisons and look at a broader kind of representative look about how people are faring out in the real world. And yeah, that's one of my things is I still I marveled at the fact, like, why we don't have more people using a connected Bluetooth glucose meter. If you're not going to use CGM, there are affordable, BGM products out there that you can you can get a 50 counted test strips for like $9 or $10. And, and test with a Bluetooth glucose meter. And that data, you know, can be then available to a clinician or a family member or what have you just like we have Dexcom and the follow, and, you know, a lot of a lot of these products now. That's something that I think for those who use BGM. But you know, it would be great if we had more of that occurring. Because, you know, it's very hard for a doctor to get insight on things if they don't understand the date, they don't see what's actually going on.

Scott Benner 53:42
Yeah. And I'm assuming too. I mean, I know a little unfairly, I know that far fewer people than you might imagine of the however many people have type one diabetes in America, far fewer of them than you might imagine using insulin pump. And I'm assuming that far fewer of them have CGM than you think to everyone's got a meter. Like everyone just has a meter. And so I guess there'd be I would imagine you'd get data back that in the beginning, you wouldn't even know where the value was until you actually dug into it to to figure it out.

David Walton 54:15
Yeah, yeah. No, I would say our best estimates right now. You know, that CGM usage for people with type one it's over 40% Now really, because last couple years it's really Yeah. You know, having Abbott and Dexcom just working hard upping their game and Medtronic getting improving you know, now that they're better sensors is on the the CUSP here within their system. You know, you're gonna have three good options. You know what, when when that finally gets out? You a lot of work in our quality improvement with all of the diabetes centers, 50 of them around the US right now. We're one of our big thrusts is trying to drive CGM usage, because the evidence is there that people do better when they're on CGM. So. But it's still not in our collaborative, which are a lot of leading larger academic medical centers, it's still it's maybe at 5051 52%, something like that. But we know across all of the US yet, you've got other segments of people where it's much less so I think it's in like the low 40s. So you know, that means exclusively there are 50, some percent are using CGM. And of those, how many are using a connected one versus just a regular one where you have to download it in and someone has to look at it and and gluco or some other download program and then make sense of the pattern? You know, it's it's that things could be done a little bit.

Scott Benner 55:51
But back in the day, I Arden center didn't have the cable for her PDM. So we never downloaded her data ever once. And you know, they were just like, here. Oh, you have that one. We don't have the cable for that. going on for years like that. Yeah. When you're when you're counting on, when you're counting on stuff like that, you're not going to make big leaps. And, you know, I mean, for people who have been around diabetes, you know, less time than you are. Or if you don't recognize that just a decade ago, you'd get a new meter, it wasn't even more accurate. And you're excited. You're like, oh, somebody made a new meter. You know, it things have leapt forward, insanely over the last I mean, decade, right, like,

David Walton 56:32
Oh, absolutely, absolutely. I mean, I, I left animus 10 years ago, you know, but at that point, we, you know, the CGM is we're just getting more accurate like, to where you're getting close to 10, this 10% numbers, there's this accuracy measure that they look at the difference between it and like a lab value blood glucose, and that was like the threshold to look at and, and they were like, 13%, you know, and they started off at 20%, which was bad. So the first versions were bad. That was like 2006. From 2006 2012, they dropped that down from like, the 20% 19 20%, down to like, 13%. And then you got into the, like, 10% 11% 10%. And that now you're down in the 8%, eight to nine. It's plenty accurate. That's very worked with that, that's for sure. Yeah. And you're right, the, the, when I left, you know, the, on the blood glucose meter side, it was like, Oh, we've got a color screen or a backlight, or some new tagging feature, a tag post meal. It wasn't. But But Bluetooth was just getting thought about. I mean, I remember when we were at, we were talking to Dexcom, about their G four, and wasn't going to have Bluetooth or ant was some other radio communication technology that I didn't really understand. And so I remember they made the decision to go to Bluetooth, which was a smart decision. But like 15 years ago, that wasn't, my understanding, was going to be the prevailing standard or not. And then it there was a lot of variability in how people implemented it. And then things got standardized and better in a more stable technology. And it's been the mainstay for the last 10 years. But those five years before it, it was up in the air as to what was going to have

Scott Benner 58:29
tandem held on just for having a color screen. Right, like they were, they were, I mean, I don't know how true this story is. But I've heard that they were getting ready to pack up and just go overseas and sell the the pump. And they just held on and held on a little longer. And people there was a day when, if you talked about a tandem pump, all you would hear was like, Oh, it has like a color touchscreen. And then and that was enough to make people interested in now you say tandem and you hear people go control IQ. So look where we got to, because they were able to hang on a little longer, you know, so, I mean, we need competition, that's for sure. The idea that Medtronic and Abbott and Dexcom make sensors is is good for people living with diabetes. It will keep everybody innovating and moving and that part of it is is that transcends psionics

David Walton 59:19
we should we should point out ever sells right? Much, much, much smaller amount but absolutely competition. And I've said this to people, both companies just Dexcom an Abbott on the TV commercial side, like you know, habit came in and made some waves and then they both had to kind of fight and be competitive to training. You know, many people's they could and it ended up now there's a lot more awareness amongst people and clinicians and what have you because of all the direct to consumer advertising this taking place and just both you know, I having bigger companies competing? Yeah, you know, if one company can just do it all, you know, they're not, they don't have to put in as much effort to go get the people.

Scott Benner 1:00:11
If you were, if you were watching a Padres game, the other night you saw a homerun, go right over a Dexcom sign in the outfield. That's, that's insane. To me. Like, that's a diabetes device. You know, on the wall in the outfield of a Major League Baseball Stadium, like I, that is just not something you would have seen in the past. And, you know, I hear people sometimes, like these companies, they make so much money. I was like, good. I was like, that's how they're going to do this. Companies that don't have money, don't do things like that. They don't they don't invest in

David Walton 1:00:43
innovation, right? You don't invest in innovation unless you're making money on it. So I understand like, look, these things aren't cheap. There's no doubt about it. You know, and then there are things that can be done. And I think, to lower the cost of making them and part of it is, the bigger they get, the lower the individual cost of each item will be because they have these economies of scale that they'll get so you want them to be big to lower the

Scott Benner 1:01:09
cost. Yeah. Because eventually my expectation is my expectation always is that one day Dexcom will call me and be like, Hey, we don't need these ads anymore. And that will mean to me that a greater percentage of people have them and it's become commonplace, like getting a glucose meter would have been 20 years ago, you get diagnosed with it, you said it and you're storing a diagnosis of diabetes and give me insulin and a meter here, boom, and there'll be a day you'll get diagnosed with diabetes, and they'll be like, here's the CGM right away. And then you would hope when the price starts to fall on them, and they don't have to do all the other stuff now.

David Walton 1:01:43
And we see that happening in certain places. I think Stanford starts people on CGM right away, but sometimes depending on their insurance, it can end up that something doesn't get covered. Right away the CGM. So they happen to have a grant that helps cover that until they can get things squared away or what have you. So that's one of the ways that they're able to just make it a rule and say, Oh, you're diagnosed. You're gonna start with CGM. Huh.

Scott Benner 1:02:12
Stanford has GAP Insurance. You're saying for CGM. It's basically

David Walton 1:02:16
like, yes. As I understand it, that that's the whole

Scott Benner 1:02:20
Yeah. That's amazing. Well, is there anything we haven't thought of or talked about that you wanted to?

David Walton 1:02:40
know? I just want to remind people T one D registry.org. Is the T Wendy exchange registry? Location. But I know you have your

Scott Benner 1:02:49
your they can't use that link. Don't use though. Use my link, forward slash given given the link Scott in the link T one D exchange.org. Forward slash juicebox. Right. And that'll get you to where you were talking about, right?

David Walton 1:03:03
Yeah, that way, we can keep track at least where people are coming from to join us. So I should have

Scott Benner 1:03:10
I should have used the I'm joking with you. Anyway, they get there is terrific for me.

David Walton 1:03:14
But that's you know what we've like I said, we hit the 20,000. Mark, we added over 100 people each week, but it gets harder and harder every week. Like because we've hit so many people, we have to keep trying to find new groups of people. So you know, we're constantly trying to think of new ways to find pockets of people who you know, have type one and are not participating yet. And to try to make the case, hey, it's very simple join and then we're doing the work to try to find studies that might be of interest, there might be some new thing that Yeah, you don't care about these other ones. But this one new one that we said that might be something of interest, you'd want to be a part of. We have a woman who works for us who is on who got to us on the pod five, because she was in the clinical study before she joined us really? Yeah. And that's the way she had access to use that technology and to have it covered. You know, as part of that, that's amazing. Yeah. Yeah, sometimes sometimes those things can happen. Other times, it could just be getting your opinion on something. And that's just you know, that's important too. But we encourage everyone to please give us a

Scott Benner 1:04:15
call. I appreciate you coming on and going over all this. I just never feel like that I can accurately. I don't know, like I say I do it in 3060 seconds at a time. And I'm like, I know I'm not telling these people everything that they would like to know about this. So I appreciate you taking the time to go over everything with me.

David Walton 1:04:32
Yeah, well, no, I appreciate you having us on and and, you know, you, you've been a great, you know, kind of advocate for us. So we appreciate you getting the word out to all the people who like to listen to you on all the topics and the speakers that you bring on. So it's my pleasure.

Scott Benner 1:04:49
It really is. I think it's a big deal. I don't know a way to magically get more people to want to be involved in research. So this is my this is my little bit of meat. trying to get people to do it. So it's really a pleasure. Thank you so much. Right?

David Walton 1:05:04
Thank you that

Scott Benner 1:05:13
a huge thank you to one of today's sponsors, GE voc glucagon, find out more about Chivo Capo pen at G Vogue glucagon.com, forward slash juicebox. you spell that GVOKEGLUC AG o n.com. Forward slash juicebox. I'd also like to thank the Contour Next One blood glucose meter. And to remind you about all the great information that is available at contour next one.com forward slash juicebox. And of course, if you're a US resident who has type one diabetes, or is the caregiver of someone with type one, t one D exchange.org, forward slash juicebox. complete the survey. That's it. Thank you. I'm still getting over COVID. So I have no energy to do all the things I'm supposed to do here. I'm supposed to remind you to go to the private Facebook group and become a member to my I got a little bit of the brain fog. You know what I mean? It's not terrible, but like today, I'm super tired yesterday, I thought, Oh, I'm better. COVID is gone. Here Here. Cheers. Cheers. Take a drink. I can't believe what what to do that my drink is gone. And today, woof feels like somebody pulled the plug, you know what I mean? But it's only day 11. So what do I expect? Anyway, if you're joining the podcast, please share it with a friend. Share it online, tell people about it. Download old episodes, definitely head to the private Facebook group or to juicebox podcast.com to get lists of all the series that are involved. involved. It's not the right word. But again, I'm really tired all the series that are available inside of the podcast like defining diabetes, diabetes, pro tip, diabetes variables, defining thyroid, mental health stuff. I mean, there's just so much I can't even if I had all my faculties right now, I couldn't remember all of them to tell you. Anyway, find them at juicebox podcast.com. In your podcast app or in the featured section of the private Facebook group. I really hope you take the time to fill out the survey at the end exchange or at least that you appreciate how hard it is to to do research and and to move these things forward. After hearing this conversation. I really have to go now completely winded and this might kill me. T one D exchange.org. Forward slash juicebox

#785 Tommy's Mommy

Heather is Tommy’s mom and he has type 1 diabetes and his sister has celiac.

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#784 Bold Beginnings: Insurance

Test your knowledge of episode 784

1. Why is it important to build a support network for diabetes management?

2. How can staying active benefit diabetes management?

3. Why is it important to understand your medications?

4. Why should you stay informed about new treatments?

5. How can customizing your meal plan help in managing diabetes?

6. Why should you monitor your blood sugar regularly?

7. Why should you prepare for emergencies?

8. Why is staying positive important for managing diabetes?

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#783 Survey Says

David runs T1DExchange and he has type 1.

Take the survey! <CLICK

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