#1654 Born This Way

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Crystal, 33, T1D since 12, recounts DKA, insulin restriction for weight, congenital health challenges, and her turnaround—prebolusing, diet tweaks, and pursuing an insulin pump—with community support and hope.

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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
Friends, we're all back together for the next episode of The Juicebox podcast. Welcome.

Crystal 0:16
Hey, I'm Crystal. I am 33 years old. I've been a type one diabetic ever since I was 12.

Scott Benner 0:24
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Crystal 1:49
Hey, I'm Crystal. I am 33 years old. I've been a type one diabetic ever since I was 1212,

Scott Benner 1:56
so watch this. Crystal. Was that 21 years ago that you were diagnosed? Yep, it's been 21 years. No kidding, all right, 12 years old. What do you remember about being diagnosed?

Crystal 2:06
Well, I was at a checkup, and I felt fine and everything. I didn't feel sick, but they said my blood sugar was so high they couldn't read it, okay?

Scott Benner 2:17
And so you were just at a regular, like doctor's appointment at my regular doctor's office. Okay, and you you did or did not, I'm sorry you did or did not feel sick prior to the appointment. I didn't

Crystal 2:28
feel sick other than falling asleep a lot in class,

Scott Benner 2:32
you're falling asleep a lot. Is that why your parents took you to the doctor? Yep, okay. They said, Hey, this one keeps falling asleep. And they checked your blood sugar right in the office, and they couldn't even read it. Well, that's kind of cool that they knew to check your blood sugar, you know. So you were you didn't have any long, drawn out problems trying to figure out you had type one they told you right in the office. Do you remember what happened next? Did you go to the hospital? Or how did they handle it? I went to the hospital and got admitted. Okay, how long were you there? Three days, I think, three days. Okay, kind of fast forwarding a little bit you get out of the hospital and you have diabetes now, but 21 years ago. So 21 years ago, 2004 right around there. That sounds about right. Sounds about right. Okay. So do they give you pens or just needles? Does anybody talk about insulin pumps like how do you recall the management in the very beginning?

Crystal 3:29
Well, when I started, I was using the insulin syringes, but they didn't really talk about pumps or anything,

Scott Benner 3:37
nothing like that. Now, did your parents help you with your diabetes, or did they leave it to you?

Crystal 3:42
My dad was actually a really, a big hope before he died.

Scott Benner 3:45
Oh, gosh, when did you lose your dad?

Crystal 3:47
Four or five years ago, the lung cancer.

Scott Benner 3:50
Oh, I'm sorry. Were your parents together when you were diagnosed?

Speaker 1 3:53
My mom

Crystal 3:55
had died when I was eight.

Scott Benner 3:58
Crystal. How did your mom pass away? Kidney failure? Oh, I'm so sorry. So your mom passed away about four years before you were diagnosed. Then you were diagnosed. Did she have diabetes or any other health issues?

Crystal 4:13
My mom had it when she was pregnant. My dad's type two, and so is my brother, but I'm the only type one, okay,

Scott Benner 4:21
but your mom had gestational Yep, okay, kidney failure. I'm sorry to ask, but was that related to something or just out of the blue, my mom was only born with one kidney, like I was, oh, no kidding. Your mom had one kidney and I was born with one. You were born with one as well. Did something happen that precipitated her kidney failure, illness? Or is that? I don't understand, people live with one kidney, right?

Crystal 4:47
So I think she was just born with that. I don't think it caused her diabetes or anything.

Scott Benner 4:54
No, no. I mean, like her passing, was there an illness that, like, you know, what? I created the damage to the kidney that led to the failure. She wasn't taking good care of herself. Oh, okay. When did you know you were born with one kidney? Anything clicked when I was in elementary school? Okay. How many does your brother have? He has both of his. What a jerk. Okay. Well, I'm sorry to hear about the passing of your parents. That's terrible, but I want to go back to you're diagnosed, and your dad is really helpful with your diabetes. So what does that mean? Like, how was he helpful?

Crystal 5:30
When I was going to school, I would check my blood sugar, and then I didn't know how to do shots. If my blood sugar was high, he would go up to the school and gave me my shots.

Scott Benner 5:41
That's nice. That's very nice of him. When do you think, at what age did you become a little more proficient taking care of yourself? Maybe taking more of it on

Crystal 5:49
sixth or seventh grade? Okay, oh. How old is that? About? 1213, no, 1314,

Scott Benner 5:57
oh, so a little later, then a couple years after your diagnosis, maybe, yep, okay, does that then completely take him out of the care or just more of it's focused on you, and he helps, but he helps less,

Crystal 6:11
that really just focuses more on me, and he kind of helps less, but still helps.

Scott Benner 6:15
Okay, so now looking backwards as an adult. Now, how are you doing taking care of yourself.

Crystal 6:21
The last few weeks, I've gotten better, but I've still got a lot of work to do.

Scott Benner 6:27
So you're telling me that things are shifting for you, but only recently. So for the last 20 years, things have been shaky, very shaky, very shaky. Okay, what does that mean? What are your outcomes like? Do you see an endocrinologist regularly? What are your a one CS?

Crystal 6:47
Well, my last a 1c was a 10, but I'm supposed to go back on the 23rd of this month to talk about the insulin pump.

Scott Benner 6:56
Okay, you're not on a pump. Still not yet. Okay, so crystal, I want you to be like a little introspective, right? Is 10 a pretty average, J, 1c, for you,

Crystal 7:05
10 is average. It's been as high as 13.

Scott Benner 7:10
It's been as high as 13. Why do you think that is?

Crystal 7:13
Well, I wasn't Pre-Bolus thing before my middles or everything I'd eat like cereal and skyrocket.

Scott Benner 7:21
Gotcha, are you telling me that it's a little to do with how you're using your insulin, a little to do with what you're eating?

Crystal 7:28
It is. And also, they had me on a sliding

Scott Benner 7:31
scale. You've been on a sliding scale for 10 years. Yep. Where do you live? I'm in South Carolina. South Carolina. I guess now you've figured out that you need to do something different, but before you knew that, did you feel like you were doing well during those years? Would you leave an endocrinologist office thinking, Gosh, I am not doing a good job. Or did you think this is going right? Like, what's your like takeaway when you leave those appointments?

Crystal 8:00
I knew I wasn't doing good. I even went into DKA last

Speaker 1 8:04
year. Okay? And

Scott Benner 8:06
when you know you're not doing well, what stops you from trying to figure out a better way? Well helping,

Crystal 8:14
listening to the podcast, asking people in the group

Scott Benner 8:18
you've just decided to, like, dig into it more,

Crystal 8:22
yep, ever since I went to DKA last year.

Scott Benner 8:25
Okay, that's the answer. So DKA kind of got you thinking, I got to do something. Tell me about the dka. How did it start, and what was it like?

Crystal 8:34
I tried to go to sleep one night, and I just kept getting sick. It was two o'clock in the morning, my stepmom called an ambulance. I got to the hospital, my blood sugar was like 918 I wasn't responding to their questions or anything. The last thing I remember when I got there was them shining a light in my eye to wake me up. Okay? I was in the ICU for

Scott Benner 9:02
three days. Were you conscious the entire time?

Crystal 9:06
I was conscious, but very confused the first three days.

Scott Benner 9:10
Okay, Crystal, tell me, how does that happen? Your MDI, right. Were you not taking your basal insulin? Were you not injecting for meals? Like, how does your blood sugar? Were you sick? Like, what happened?

Crystal 9:21
Well, I was skipping shots, and I had a bad infection too.

Scott Benner 9:26
So you had an infection, which was adding to your insulin need, but you're skipping Why were you skipping shots to lose weight a little bit? Ah, okay, so is that a thing you've done throughout your life?

Crystal 9:39
It is, but I haven't really lately, I've been taking

Scott Benner 9:42
them all. Okay, where did you learn that? Just by, like, Googling, okay. Now, do you know that's dangerous when you're doing it? I learned that the hard way. So, okay, so this is interesting, Crystal, and please don't be embarrassed like I appreciate you sharing your story. Okay? I. Huh? So was your weight an issue, and you were trying to find ways to do something about it, and you tripped across the information. Or, like, how does that first come to be the first time that you thought, I'm going to restrict my insulin, because I'll try to lose weight that way. Do you remember how you got to that information?

Crystal 10:16
I don't really. But when I was going to school, I was, like, always picked on about my

Scott Benner 10:21
weight. Oh, your whole life. Yep. Okay, and so you're looking for ways to deal with it, which wasn't really the healthiest way. No, no, no, no, let's not be unclear. Crystal, it's not a good idea at all. So you find out through googling. I would give anything to be there the day you were Googling and to know what you typed in to get that information, but like you're looking for ways to lose weight, and you come up with, if I don't take my insulin, I'll lose weight,

Speaker 1 10:49
yep.

Crystal 10:51
Didn't even think of the consequences or anything.

Scott Benner 10:54
You didn't think of what might happen. How old do you think you were the first time you did that? 1617, maybe 16 or 17. And you tell me again you're how old right now? 3333 did it work the first time you did it? Or did it work enough that you thought I'll try it again? How often did you do that

Crystal 11:13
it worked to where I thought I'd try it again?

Scott Benner 11:17
Okay. Was it a thing you did yearly, twice a year. How frequently? Like, yearly, once a year. Okay, don't answer me if you don't want to, okay. But would you tell me how tall you are and how much you weighed when the first time you try to

Crystal 11:33
do it? I have one, I think I was like, right at 200

Scott Benner 11:37
okay? And what's your weight now? 202.

Crystal 11:42
Now I gained like eight pounds.

Scott Benner 11:45
I see you pretty much maintained around that 200 weight, though, I assume you haven't grown. You're still five one, right?

Crystal 11:52
No, I'm still five one. I've been as low as 150s

Scott Benner 11:55
before, though, okay, what age? I think that was about two years ago. How did you get to that? Was it restricting insulin? Or were you dieting, exercising, or did you find something else

Crystal 12:08
I was not doing shots and walking a lot, okay?

Scott Benner 12:12
And while you're doing that, you think, I want to make sure I understand what you were thinking during that, during that you were thinking, Hey, I found a way to lose weight. This is great. Where you thought I'm potentially hurting myself, but I'm losing weight, so I'll go with it really. The second one, you did have some idea that this wasn't okay not taking the insulin.

Speaker 1 12:33
Yeah, okay. Would you describe to me

Scott Benner 12:37
a general idea of what you eat in the course of a day,

Crystal 12:40
usually in the morning will be like cereal, which I'm trying to not eat as much, because I'll wake up my blood sugar will be like 90, and it'll shoot right up to three, four hundreds before

Scott Benner 12:55
you eat or after you eat, before I eat, before you eat. So you wake up in the morning with a lower blood sugar. And do you shoot your basal insulin before you go to bed? I do like right before, right before. Okay, so overnight, you have a pretty stable overnight blood sugar normally. Do you have a CGM? I'm sorry, I have the Dexcom g7 okay, you're wearing a g7 so overnight, what are your blood sugars look like overnight you shoot your what is it? Levimir, Lantus, Toshiba, what do you use? I'm on Trujillo, oh, to Jero, okay, overnight. And then what are your blood sugars look like overnight?

Crystal 13:30
Well, last night, I kept having to wake up because they kept dropping during the night. And I woke up and it was at

Speaker 1 13:39
like 40. Oh, you're getting low last night? I ended up like with

Crystal 13:42
two juices last night. Were

Scott Benner 13:44
you particularly active yesterday? A lot of walking or out in the heat or something like that. I'm usually always walking or I go outside. I feed stray cats. Okay, take care of them. Oh, that's nice. Is that your job? Do you have a job. What do you do?

Crystal 14:01
I don't so pretty much. My stray cats, I'll take care of them. When they have kittens. I'll find the kittens homes.

Scott Benner 14:11
That's so nice to you. Live with your stepmom. I do and my brother. Okay. Are you not working on purpose, or is there a reason I'm really not able to tell me about that

Crystal 14:24
I have, like, so many health problems on SSI and everything.

Scott Benner 14:30
What are some of your other health problems? I'm missing a heart valve. Wait, you have one? What'd you just say you have a single heart valve? This episode is sponsored by tandem Diabetes Care, and today I'm going to tell you about tandems, newest pumping algorithm, the tandem mobi system with control iq plus technology features auto Bolus, which can cover missed meal boluses and help prevent hyperglycemia. It has a dedicated sleep activity setting and is controlled. Controlled from your personal iPhone. Tandem will help you to check your benefits today through my link, tandem diabetes.com/juicebox, this is going to help you to get started with tandems, smallest pump yet that's powered by its best algorithm ever control IQ. Plus technology helps to keep blood sugars in range by predicting glucose levels 30 minutes ahead and it adjusts insulin accordingly. You can wear the tandem mobi in a number of ways. Wear it on body with a patch like adhesive sleeve that is sold separately. Clip it discreetly to your clothing or slip it into your pocket head. Now to my link, tandem diabetes.com/juicebox, to check out your benefits and get started today. I have always disliked ordering diabetes supplies. I'm guessing you have as well. It hasn't been a problem for us for the last few years, though, because we began using us Med, you can too us med.com/juicebox, or call 888-721-1514, to get your free benefits. Check us med has served over 1 million people living with diabetes since 1996 they carry everything you need, from CGM to insulin pumps and diabetes testing supplies and more. I'm talking about all the good ones, all your favorites, libre three, Dexcom, g7 and pumps like Omnipod five, Omnipod dash tandem, and most recently, the eyelet pump from beta bionics, the stuff you're looking for, they have it at us. Med, 888-721-1514, or go to us. Med.com/juicebox, to get started now use my link to support the podcast that's us, med.com/juicebox, or call 888-721-1514,

Crystal 16:47
no, I am missing one.

Scott Benner 16:49
You're missing a heart valve. I was like, I don't think you're gonna be okay with just one. So you're so there's a congenital defect. You you're missing a heart valve. I was born that way, right, right, right. And you have one kidney.

Speaker 1 17:00
What else

Crystal 17:02
I was born without a uterus.

Scott Benner 17:05
Get the hell out of here. Seriously, yep, did your mom crystal? I almost said the dumbest thing that anybody could possibly say. I almost said, Did your mom have a uterus? I wouldn't be here. I know crystal. That's why it's to be the dumbest thing anyone could have ever said in that situation.

Crystal 17:27
Oh, my gosh. Okay. Made my face like, turn all right,

Scott Benner 17:31
yeah, made me mine too. I was like, Oh, I don't have to tell people this, but I'm just gonna say it anyway. I almost said something so stupid. I'm sorry. Any anything else, the heart, the heart, uterus,

Crystal 17:44
kidney, well, I have high cholesterol, okay, I had high blood pressure, but that's actually gotten more normal now, and I've gotten taken off for the pills.

Scott Benner 17:59
That's good. That's awesome. What did you do in school? What did you enjoy in high school?

Speaker 1 18:04
Well,

Crystal 18:06
my favorite class was drama class. I love the stage

Scott Benner 18:12
and chorus. Okay, did you go to college? I did not. Did you consider it? I did consider it, but

Crystal 18:21
it's like, so expensive,

Scott Benner 18:23
yeah, no, I understand. If you went, what do you think you would have gone for?

Crystal 18:27
Maybe nursing. I kind of like to help

Scott Benner 18:29
people. You like helping people. Okay, so you don't see yourself in the future having a job

Crystal 18:36
I do, and I've been kind of looking around, what do you think you might look into, maybe, like working at the hospital or with pets, children?

Scott Benner 18:46
Yeah, stuff, helping people, helping pets. You enjoy that because I'm good with kids too. Yeah, you are. Oh, that's awesome. I am too, by the way, kids love me.

Crystal 18:57
It's funny. I'll go swimming and stuff, and a kid will randomly come up to me and be like, hey, I want to play tag in the water.

Scott Benner 19:05
Oh, that's lovely. Do you have something called Have you ever heard somebody call, my gosh? What is this? Muller Aryan, agnesis. I've actually never heard those words. A female born with no uterus. Mayor, my gosh. Why would they use something, something Houser syndrome, one kidney called renal agnesis, missing a heart valve. Oh, and I do have another condition get out of here. What else trying to think how to

Crystal 19:35
hydro something supera, the skin condition.

Scott Benner 19:40
Okay, hold on, skin condition. Let me see if I can figure it out. Skin condition, hydro, H, hydro, what

Speaker 1 19:49
hydro? I don't know.

Crystal 19:53
Superior is at the end, I don't know the ER told me one day I got it,

Scott Benner 19:58
he found it. Hydro. Written, okay, hold on. Hydronetis, superlative, yeah, that one abbreviated HS, chronic skin condition that causes painful lumps or nodules under the skin, often in areas where skin rubs together, like armpits, groin, under your breast, buttocks, lumps can become inflamed and swollen, rupture and drain, form tunnels or tracks and scar over time. It is not contagious and not caused by poor hygiene. This is a thing you have.

Crystal 20:27
I got that diagnosed with that when I was in the hospital with the

Scott Benner 20:33
infection, oh, the infection in the dka. It

Crystal 20:36
was like under my arm, under your arm, where was the infection? I have, like, two cysts under my left arm, and they got infected, and I didn't even know I had it until they said, I got you because

Scott Benner 20:48
you slipped into the DK, and they took you to the hospital, and then they found all that stuff when they were trying to figure out what was going on.

Crystal 20:54
And I have another one too.

Scott Benner 20:56
You have another what condition Go ahead? Gastroparesis. You have gastroparesis, stomach damage? Yeah, from the high blood sugars all those years,

Crystal 21:06
they told me I could still have breakfast in me by dinner time. That's how slow my digestive system is.

Scott Benner 21:13
Oh, gosh. Have you ever tried a little over the counter digestive enzyme to put along with your food to help it break down. I haven't I wonder if that helps it might you can find them. I mean, pretty much anywhere you can get them, on Amazon. Amazon comes to South Carolina, right? Oh, yeah, I love Amazon. Who doesn't? Let's see, hold on, digestive enzymes. I'm gonna look for you. There are probably a ton of different kinds. I would try pure encapsulations. Is one company that makes digestive enzymes. And if you want something that might be a little better priced, there's something, something called Super enzymes by now also should be pretty valuable, based on how I'm seeing them formulated here. Yeah, that 112's bucks. Listen, you know, I mean, everything's expensive. Now, 90 of them for $12 let's see it. Has the beta team, HCI, the ox bile, yeah, this ought to be okay, yeah, like take a capsule with a meal and see if, um, if, if you don't, maybe experience, uh, some better digestion does. Does the slow digestion cause problems on the other side, when it's coming out,

Crystal 22:35
it does. And I'll I get, like, a lot of stomach pain,

Scott Benner 22:39
yeah, this might help with that. It's worth a try. It's worth $12 to try. I think

Crystal 22:43
I'll get that. And leg cramps, a lot leg cramps.

Scott Benner 22:47
You could address the leg cramps with magnesium. Uh huh. Hold on a second. Are you taking any vitamins in general,

Crystal 22:57
right now? I'm not, but I'd be open to it.

Scott Benner 23:01
When you say problems going to the bathroom comes out too much or not enough. Not enough. I like you trying a magnesium oxide and the digestive enzyme. This should be, maybe there should be a pretty cheap magnesium oxide. Hold on a second. I'll send these to you when we're done. All right, so I like twin lab. They sell a two pack for 20 bucks. That's not bad, but you can get cheaper if you want it, but it has to be oxide, magnesium oxide. I would try one of those a day for going to the bathroom more consistently. And I would try the digestive enzyme with meals to see if you can't get your digestion to work a little better. Now that we've kind of gone all through that, and I feel like we have a good idea of who you are and how you got where you are, I need to ask you the DK, happens? You come out and you say to yourself, I gotta do better. What's your next step when you realize you have to do better?

Crystal 24:05
Well, right now I'm trying to get the Omnipod, but my doctor wants me to see her first

Scott Benner 24:13
before you can get a pump, before you get any pump or Omnipod. And you looking for Omnipod five, you want some automation or you What are you thinking

Crystal 24:21
about? I'm trying to decide between the Omnipod five and the tandem tea

Scott Benner 24:26
slim control IQ. Okay. I mean, I think either is a good option for you. Do you prefer the tubeless part, or do you not mind the tubing? Which one do you think you'd have an easier time with? I don't really mind the tubing. You don't mind the tubing. Okay, so you're looking right now at tandem control IQ, the x2 probably, or the Omnipod five.

Crystal 24:47
The only thing I would worry about is going low during the night.

Scott Benner 24:51
Well, both of those systems are going to do their they're going to try to keep you from getting low overnight. I don't think it's always going to work, but they're going to they're going to try. They're. What's your a 1c, right now? Did you say it's 10 right now?

Crystal 25:03
It's right at 10, and that's down from a 13.

Scott Benner 25:08
Okay, you've gotten it down since the dka, yep, by doing what,

Crystal 25:13
just trying to watch what I eat more, and Pre-Bolus thing that's been a really difficult where'd you learn about that Ryan's actually helped me a lot. Oh, you

Scott Benner 25:23
mean in my Facebook group, yep. What's up, Ryan? Good for you, man out there, helping people. That's awesome.

Crystal 25:29
He's awesome. He is, isn't he? I'm not. Nico. Are really good.

Scott Benner 25:34
Nico's awesome too. Yeah, no kidding, Crystal, look at you. Like so how did you find the Facebook group?

Crystal 25:40
I was searching diabetic groups on Facebook once, and that actually came up,

Scott Benner 25:44
got your attention, and you went and checked it out. Yep, you found all the lovely people inside trying to help each other. Benner, I didn't need the other groups. Well, the other ones, of course, are, you know, what do you need when you got the best you don't need the rest.

Crystal 25:58
And so many that are helpful in this group too.

Scott Benner 26:01
Really awesome people. No kidding, right? Yeah, that's that's excellent. I want to ask, though, at the hospital, did someone in the hospital, or a family member, your brother, or perhaps your your stepmom, did someone direct you and say, hey, you've got to get help, or is that something you came to on your own.

Speaker 1 26:20
That's

Crystal 26:21
really something. I came to on my own. Okay, awesome. And then when I saw the 918 I'm like, Yeah, that's not

Scott Benner 26:29
good, yeah. So listen, I'm not your dad, right? But I'm gonna tell you, I'm gonna tell you something. Okay, restricting your insulin is not okay. Don't do that. Okay? You're right to decide to eat differently, because when you take in fewer calories and use the correct amount of insulin, if you eat the calories that you should in a day and take in the insulin, you're going to lose weight. And it'll take a little bit of time, but it will, it'll work. I would also say obviously that keep going with, like, moving around, getting outside, walking all really great stuff. Make sure you're drinking, you know, a fair amount of water.

Crystal 27:09
Yeah, I'm kind of bad at not drinking water.

Scott Benner 27:11
What do you drink when you're thirsty? Diet soda, all right, so no sugar in your drinks, right?

Crystal 27:18
No diet soda or tea, but sometimes a sweet tea.

Scott Benner 27:22
Okay, no, sweet tea. Okay, listen to me, don't drink sugar. Okay, simple thing to do, don't drink sugar. That's going to help you a lot, lot of calories, lot of sugar, a lot of need for more insulin. If you take in too many calories, and you know you're you're going to gain weight, so you're going to have to restrict your insulin a little bit. Look for foods that are easier to digest. I would mix cereal. Is that one crystal? I haven't gotten to that yet, but please stop eating cereal. Okay, yeah. What kind of cereal you're

Crystal 27:54
eating? Like the rice krispies, the sugar cereal, basically

Scott Benner 27:58
not good. Hard to Bolus for lots of calories, lots of sugar, right? What if we had, have you? Have you? Do you like an egg? Have you had an egg? Ever hard boiled eggs? You like a hard boiled egg? Have you ever, have you ever poached an egg? I haven't, but that actually sounds good, a little bit. A low rolling boil, a splash of vinegar helps it stay. Crack the egg right into the water. Then you just you decide how much you want the the yolk cooked. You leave it in till it gets as firm as you want it. Take it out. Lovely salt, pepper. You're gonna love it. Okay? Scrambled egg, perhaps fried egg, even tiny bit of butter, I don't mind that in the morning with some sort of protein. You know what I mean? Mix it with, I don't know, anything you like really. You know, you like bacon, have some bacon. You you like a sausage, have a little sausage, chicken, anything at all, like that. Pro, try to stay higher protein in the morning, like that. It'll help you lose weight, to give you energy for the day. Won't be hard on your blood sugars. Do you like a salad? What do you have for lunch?

Crystal 29:06
Lunch is usually just pretty much a sandwich,

Speaker 1 29:10
okay, what kind of sandwich you enjoy?

Crystal 29:12
Ham, roast beef,

Scott Benner 29:14
okay, is that like a deli meats that you get from the grocery store?

Crystal 29:18
Yeah, like a Walmart. Okay, all right. And I'll put cheese on it sometimes.

Scott Benner 29:23
Not bad. What do you what do you bread? What kind of bread you like?

Speaker 1 29:26
White bread? All right, I know that

Crystal 29:29
one can cause your sugar to go up too.

Scott Benner 29:31
No. But let's just make sure that we're buying white bread that doesn't have high fructose corn syrup in it. So you, you're gonna look on the label for no high fructose corn syrup, and that's extra added sugar that you don't want. And there are plenty of breads out there that you can get that don't have that that would be a big help for you. And then what are you having with that sandwich?

Crystal 29:51
Usually I'll have, like, some chips. I'm bad at having Pringles. Pringles.

Scott Benner 29:57
Which ones you like, the red or the green? I.

Crystal 30:00
Like the sour cream, one with

Scott Benner 30:04
the the orange can you're telling me, yep, I hear you. Okay. Is there a world where I could have you replace the Pringles with maybe just a nice tortilla chip that would probably work? Yeah, of course. It would just a nice, simple tortilla chip. Gonna try to take some of the processing out of that, of those Pringles. I mean, I listen Pringles, awesome. I know what you're talking about. It's crunchy and it's salty and it's Gail zing from it, but not good for you. These are the things. You remove these things from your diet, you're gonna use less insulin, you're gonna lose weight. You're gonna be in a completely different situation. And you know, how much weight would you like to lose?

Crystal 30:45
About 20 or 30. Nothing too crazy.

Scott Benner 30:48
Okay. Well, listen, you'll never know where it lands. You know, when you you adjust your your intake a little bit, you're going to use less insulin. And then, you know, you have no idea where it'll, where it'll, where your body will kind of find its spot where it wants to be once you're taking in kind of an appropriate amount of calories in the day. How about dinner? Your mom cook, or your stepmom cook or or do you cook?

Crystal 31:11
Does dinner kind of usually varies.

Speaker 1 31:16
How last night was? Beef stew.

Crystal 31:21
Okay, I will do like spaghetti, some night stormy tacos. All right, all

Scott Benner 31:27
that sounds great. Do you know how to Bolus for that stuff? You learning?

Crystal 31:31
Learning? It's a process. Yeah, it

Scott Benner 31:34
certainly is. No it takes time to figure it out. Your stepmom helping you with any of this, or are you pretty much leaning on the people online. Pretty much just leaning to the people online. Yeah, does she have any health issues? Your step mom? How old is she?

Crystal 31:48
I think she just turned

Speaker 1 31:49
60. Okay, that's nice, nice age. Did you have a party?

Crystal 31:55
No, just a stay at home day.

Scott Benner 31:58
How about a card? Did anybody get a card. I made her a card. Hey, that's very nice. Did you draw something on the front? I did, but nothing fancy. I'm not a good drawer. I'm not either. I want to tell you very, very bad with the drawing. If people who are good at drawing are considered talented, I don't know what I'm considered not talented. At the very least, I'm terrible at drawing. I can barely write and read my own writing when I'm done.

Crystal 32:22
I have that problem too. Then it's like, Okay, what does that say? What did I write there? Oh, that

Scott Benner 32:27
happens to me a lot. I throw away a lot of notes. And the last thing I think was, huh, I wonder what that said. Do you use, like, a lot of white out? No, not anymore, but yeah, I used to, do you use white

Speaker 1 32:39
out? I do all the time.

Scott Benner 32:42
Awesome. I didn't even know when I

Crystal 32:44
was in school doing homework and stuff. I'm like, okay, that doesn't sound right, yeah. Do you have a computer? I do. I'm in the process of trying to save up for another one too.

Scott Benner 32:54
Okay, all right. How much do you think you'll need to get a new computer? 500 600 they're expensive. They are, they are, what do you use it for?

Crystal 33:03
Mostly, mostly, I'll play games, listen to the podcast, listen to YouTube,

Scott Benner 33:09
gotcha, and reach out to people online, but in the Facebook group too, I would imagine.

Crystal 33:14
And I'll watch peacock and Hulu on here too.

Scott Benner 33:17
Hulu, do you watch that murders and only murders in the building show. Oh, I do, yeah, the new the new season just came out the other day.

Crystal 33:25
I actually just got Netflix. I started watching Wednesday.

Scott Benner 33:29
Oh, I think there's two seasons of that available right now. I'm only on episode three. Yeah, are you liking it so far? I am. She's Interesting, yeah, no, no, she is. She's got a weird look, right? All right, so crystal, you're doing a good job here for yourself. You're trying to get the pump, like, How long till you think you're gonna have a pump in hand?

Crystal 33:49
Well, I see her on the 23rd and she said she'll send a prescription, and from there, I've talked to the pharmacy, and they said it would only take three to five days to get to me. Okay, so

Scott Benner 34:01
this is going to be covered by your what do you have Medicare? I do okay, and they're going to cover that.

Crystal 34:08
And then I'd have to set up training and all that. Yeah, I hear

Scott Benner 34:11
what you're saying. You're definitely going to need training. They're going to switch your insulin, you know, what's your fast acting insulin?

Crystal 34:17
Now I'm on Humalog. I took Novolog a long time ago.

Scott Benner 34:22
Okay, well, Humalog will work. The Humalog will go into your pump, and then there won't be any more of the to zero. That'll be gone. You won't need

Speaker 1 34:30
that anymore once, that'll be a whole lot easier.

Scott Benner 34:32
Yeah, right? One insulin, the pump will take care of it. But now you know, when you're using a pump, you we don't want you back in DK ever again, right? So, like, you the pump can't run out. You can't go like, Oh, I'll put another one in an hour or something. Like, you got to keep your pump on. Keep things going Bolus, your meals, keep Pre-Bolus in the way you're doing. You know, always have that pump on. That's going to be very important, okay,

Speaker 1 34:56
yeah, and make sure

Crystal 34:58
it doesn't like, fall off or anything.

Scott Benner 35:00
And, yeah, right, you know, hopefully it'll stick to you nicely if you get the Omnipod, and if not, like, if you have trouble with it with your skin, you can get, like, overlay patches that help hold it down. If you go with the tandem, the control IQ, it'll just be your infusion set that'll have a little sticky on it. And people don't normally have too much trouble with those that'll help when I go swimming and stuff. Yeah, exactly. Do you swim a lot? Very rarely. No, well, where would you swim in South Carolina? Pool. I got to a public pool. Usually was gonna say public pool, or a lake or something. Are there lakes in South Carolina, or are there alligators in those lakes? We've got a couple of lakes. I don't know much about South Carolina. I've driven through it, but that's it. They do have that one thing out on the highway the south of the border. Have you ever driven past that? I've driven past that a couple of times. Okay, do you drive I don't something I'm working on too. Okay, trying to learn. Yep. Okay, that's awesome.

Crystal 36:01
Instead of having to ask people to take me to the doctor and all that, yeah, do you date? Actually, I am in a long distance relationship. Are you now? We've been dating seven

Scott Benner 36:14
years. He lives in New York. No kidding. How'd you meet? We met online. Actually, very nice. What's his deal? What's he do right now? He doesn't have a job. He's looking for a new one. What did he do before corrections? He's a corrections officer. Uh huh. Oh, interesting. Ad. Do you get to see each other in person

Crystal 36:34
ever? About once a year?

Scott Benner 36:38
Maybe no kidding. Do you think you'll ever move to be closer to each other.

Crystal 36:42
He's actually thinking about moving to Florida.

Scott Benner 36:46
That's a little closer than New York, about,

Crystal 36:49
I don't even know how much closer,

Scott Benner 36:52
no, I'm gonna say, I'm gonna say about 500 miles. Come off the top, then it's probably like 300 miles closer than not, except probably a lot closer by car all of a sudden. You know, that'd be exciting and be

Crystal 37:05
very doable to come visit. Yeah, of course,

Scott Benner 37:08
that'd be lovely. What are your goals around the diabetes? Like, where do you hope to put your a 1c, if and when you get it to a point where you're like, This is awesome. This is exactly what I was hoping for. Like, where do you imagine that

Crystal 37:22
being the lowest my a 1c has ever been was 7.5 I'd like to get it there or lower?

Scott Benner 37:31
Yeah, I think you put a pump on and you get good settings and cover your meals. I think a sevens very doable.

Crystal 37:41
Might have to, like, tweak the settings, maybe a little bit, yeah.

Scott Benner 37:43
I mean, along the way, that's gonna, that's definitely gonna be true. You're gonna need to get, you know, the doctor's gonna have to help you get set up in a reasonable way. You'll see what's going on, right? Like, there might be times where I don't know you might, like, you know, around your period, for example, oh you don't have a uterus. Do you get a

Crystal 38:01
period? I don't actually,

Scott Benner 38:04
awesome. That's good. Now people are jealous.

Crystal 38:08
I don't want one of those.

Scott Benner 38:09
Yeah, nobody wants that. Do you get, like, a hormonal shift every month, even though you're not having a period?

Crystal 38:16
I do a little bit, and I'm on birth control.

Scott Benner 38:20
Okay, so you do have that birth control for. What's the birth control for? To help with hormones, keep your hormones more stable. How long have you been on those

Crystal 38:29
since high school? I think it's been a while. Why did they put you on them originally? Honestly, I don't even remember. I'm saying,

Scott Benner 38:38
Crystal, why don't you talk to your doctor about that, because couldn't that be I mean, I'm not a lady, but couldn't the birth control help or be part of your issue with weight? Maybe, hold on a second, I don't know, so I'm gonna try to find out birth control can affect weight, but the relationship is more nuanced on a second, water retention, hormonal effects on appetite, estrogen and progression and birth control can increase appetite in individuals, potentially leading to increase the calorie intake. Small portion of users may see shifts in where their body stores fat, like hips, thighs, breast due to hormonal changes. Most large, well controlled studies find little to no significant long term weight gain from birth control. Anyway, I would ask a doctor, I don't really know, but I would say, Hey, I've been on birth control for 15 years or more here, and I got to be honest with you, I don't have a uterus, and my boyfriend's in New York, so is this a thing I need to be doing? Could this be part of my issue with my weight? Ask the question, see if you can get an answer from a doctor on that

Crystal 39:49
yeah, because I was just at the doctor the other day and she said I gained eight pounds.

Scott Benner 39:54
Yeah. I mean, what was her advice? The only thing she really,

Crystal 40:03
pretty much, only told me was stop eating cereal.

Scott Benner 40:06
I mean, it's good advice, but it makes me wonder why she didn't wonder about the about the birth control too. I'd want to, I'd ask about that. If I was the doctor, I would, I would kind of dig into that a little more, because eight pounds kind of seems like a lot. It is, right? I mean, like 5% of your weight, actually, so it's a, it's a big number for that. And did you change anything? You're using more insulin, right?

Crystal 40:31
Yeah, I'm using more insulin, just Pre-Bolus thing, and I didn't really change much.

Scott Benner 40:35
Okay, so crystal, I'm going to tell you this. I think, like you said, if we if you eliminate the cereal and, you know, go with something like something more natural in the morning, like I said, eggs, some sort of protein, like meat, you know what I mean, bacon, sausage, I don't know, anything like that. You know, try to stay away from bread that has a lot of sugar in it, so no high fructose corn syrup. Take a look on the label. Just make sure it doesn't say high fructose corn syrup in the ingredients. Drink a little more water. Keep going outside, moving around, walking, you know, finding exercise. But I would just try to cut sugar out of my diet. Sweet tea. No, you know that's just, yeah, not really healthy. Yeah, that's empty calories and a lot of sugar you don't need, and more insulin, because you're gonna have to Bolus for the sugar in

Crystal 41:27
it. Think I drink too many diet sodas? I'm like, hooked on those.

Scott Benner 41:30
Yeah? Well, listen, I prefer if you didn't drink too much soda, but over sweet tea, I'm choosing the diet soda over the sweet tea, yeah, whether the sweet tea, yeah. I mean, there's other stuff you could do. There's some, oh gosh, like, there's like, no sugar, like, cranberry juice. I don't know if there's other things you might find that you enjoy. I don't know you have to cut.

Crystal 41:50
I like those. I don't know if you've seen them, those Starburst flavored waters.

Scott Benner 41:55
I have not. But that does not sound like it's gonna be. Hold on, Alexa, do they have sugar? Actually zero sugar. Okay. Well, listen, anything zero sugar, I think is better than sugar for you. Uh huh, you're telling me there are Starburst waters,

Crystal 42:09
flavored water.

Scott Benner 42:10
Yep. Come on a second. Where do we live? Oh, yeah, there it is. How about that Starburst ice? Yep, they're actually good. I imagine they might be tasty. Strawberries, zero sugar, okay? Well, like four or five flavors, I think. How much are they? Expensive?

Crystal 42:30
$1 and stuff at Walmart.

Scott Benner 42:33
Okay, I was looking at the Walmart right here because I knew you said you went there 12 pack, a 12 pack of variety, 17 ounces, 12 pieces. How much? Why won't you give me a price? You would think I would give you a price. Yeah, you know, on it, don't they want me buying? Oh, $24 everything's gone up. You're not kidding. So that's $2 a bottle. Well, you know what they say about water pre Yep, yeah,

Crystal 43:06
and I prefer bottled water because I've got well water.

Scott Benner 43:11
Does it taste like minerally? It does? Yeah, icky, a little icky. I hear you. Well, then, okay, then bottled water, it is all right. Do you know what you're doing now. You have a good idea, a plan

Crystal 43:24
I do, and hopefully that ANC will get down soon.

Scott Benner 43:28
Listen, you're paying attention to it. Crystal, that's the biggest deal. Okay, so you're paying attention you have a goal. You know what you're you know, you know what you want to get done. You know, you've outlined all the smart ideas eliminating sugar and junky food from your diet, you're already getting outside, moving around a lot. You keep doing that. Do more if you can. You know, be careful. You know, as you're changing your diet, we don't want you to have in a bunch of low blood sugars because you're using more insulin. You know, you're using the amount of insulin that you usually use with the junky food, and then you take it away. You know, you might see some need to adjust your, you know, your basal insulin, if you're getting low or seeing lower blood sugars. So keep an eye on that. Talk to your doctor about it. I'd let them know, you know, the first time it happens, you know, you see a low, it's hard to deal with, and you've changed your diet. I'd call and say, hey, look, you know, I've cut some things out of my diet, but I'm seeing some low blood sugars. Do you think we should adjust my basal? You know, maybe my insulin sensitivity for corrections.

Crystal 44:29
One thing I'm trying to get better at when you wake up in the morning and your blood sugar just rises foot on the floor,

Scott Benner 44:36
yeah, you get nervous in the morning, or adrenaline, excited. How do you feel in the morning when you wake up? I get like, excited, yeah, yeah, to get the day going right,

Crystal 44:46
and then it'll shoot up. Then you're like, uh, really?

Scott Benner 44:49
Have you tried, like, waking up and giving yourself a little insulin right away? I have, like, 10 minutes before I wake up. How does that work? That's actually how. Helped a whole lot better, good, yeah? Just kind of get in the way of that rise with some insulin.

Crystal 45:06
I kind of freak when I see double arrows up, though, yeah.

Scott Benner 45:10
I mean, listen, I understand you don't want that, but you don't have to freak out. Also, I think with either of the pumps that you're talking about, they, you know, both have, you know, automated systems that should help you with that. As that rise starts to occur, it should start pushing back, even before you you're awake, to push the button and ask for more. So that can help as well. Maybe I didn't even think of that. I think you're going to be in a much different situation in six months from now. You know, because you got a different focus, you're going to have different tools that should give you enough time to figure out, you know, your settings and how to use your pump and everything. And I think you're going to be really pleased with with yourself and all the work you've put in, you know, a few months from now,

Crystal 45:53
and it'll be a lot better than using shots.

Scott Benner 45:56
You prefer to get rid of the shots if you can. Yep, yeah. How many shots you have a day usually. Right now

Crystal 46:01
it's three to four shots today, but lately, it's been more with corrections.

Scott Benner 46:06
Okay, yeah, is that counting your basal or plus basal? The plus basal? Yeah, three or four shots. Are you injecting just when you're eating meals? I do just before I eat? Okay? But now you're starting to do more corrections for high blood sugars. Yep, that's a great idea. That's very good. You don't want to sit and stare at your at high blood sugars, right,

Crystal 46:30
and waiting for it to go down before I eat. But I'm just kind of struggling with still. I'm used to just eating.

Scott Benner 46:37
Yeah, well, listen, may I say something between you and I feel like we might be friendly. Now, I'll be honest with you, okay, you're not working just, you know, chill out and wait. Pretty busy, you know, I'm saying, yeah, just like, you know, I know it's tough, but find something to distract yourself with. Just don't get so distracted that you forget to eat. I've actually done that before. Yeah, of course you have everyone has I've made full plates of hot food and never touched it. You ever done that?

Crystal 47:05
Ridiculous? And one day I went there to go lay down, and I'm like, oh, it's dinner time. I need to eat. And my step mom goes, you don't remember you already ate dinner? No kidding. I'm like, wait, I don't remember any of them. Were you just tired? I think I was just exhausted that day.

Scott Benner 47:24
Yeah, you know, you're not gonna feel as tired when you get your your a 1c down, when your blood sugars are lower and stable and they're not fluctuating up and down all the time, you're gonna feel better. You really are. It's gonna change a lot of things for

Crystal 47:36
you. And I won't almost faint, like I almost fainted in church or Walmart once

Scott Benner 47:41
wait from low blood sugars or from high

Crystal 47:45
from, I guess, high blood sugars, that went really low when I was in the store,

Scott Benner 47:51
Oh, I see, start walking around the Walmart, and it crashed. Well, I was in

Crystal 47:55
the pet food aisle, and I started getting dizzy. I looked it was dropping. I go, Oh, I'll feel fine. I get to the cash register and at least start feeling worse. And almost passed out, and a nurse was right behind me.

Scott Benner 48:11
She help you out. She gave me a regular Coke. Nice. What kind of pets you have? Besides the cat? Were you there getting cat food?

Crystal 48:20
I was getting cat food, and I have two birds too.

Scott Benner 48:23
What kind cockatiels? Oh, did they go in the same cage, or they? Did they stay together? Do they have to be separate? They stay together, a boy and a girl? Do they make any babies? Not yet. How long have you had them? It's been five years, they haven't made a baby yet. Nope. Are you sure it's a boy and a girl?

Crystal 48:44
I think not 100% sure.

Speaker 1 48:47
How do you check? I don't even know.

Scott Benner 48:51
Just like Cockatiel or cockati Yeah, cockatiels, they're like, they got the little yellow, they're white, and they have a little yellow up on their head,

Crystal 48:58
right? Yeah. The boy, he is white with like blue, and the girl's really dark.

Scott Benner 49:06
Oh, she's dark, like a great green, gray. Yeah, my friend's mom had them. Actually, he had diabetes too. Did he? I didn't know that. I know, yeah. But do you think cockatoos heels give people diabetes? Now, probably not, right? No, I don't think so. Do you think people with diabetes just like cockatiels? Hmm, there's no way for us to know this. Okay. Do you have any questions for me or anything that you'd like to talk about that we haven't talked about so far? Um, I don't we did a good job. We did you awesome. Oh, you were awesome. I was just okay. You're just okay, yeah, I mean, I did my best, but you were really the star of the show. You really, you really made things work, and

Crystal 49:47
I'm glad this phone works a whole lot better to understand me. Yeah,

Scott Benner 49:50
no, your headset, people don't know this because it was before we started working, but your headset, it sucked. Yeah, I need a new one. That what I tell you. I said, throw that thing in traffic when. You're done. There's nothing good about that thing. But no, this worked out really well. You sound awesome, and you were able to hear me. Okay, right? Big time. Yeah, okay. Well, I just want to tell you that I'm super happy that you found the Facebook group and those people and that they've been helpful for you. I'm really proud of you for taking control of your situation and already getting your a 1c down as much as you have. I really do think that if you keep on the path you're on, and stay focused the way you are, that you're going to learn a lot of new stuff over the next couple of months. And I guarantee you're going to have an A 1c in the sevens when you get that pump. That'll be awesome too. It's really going to be wonderful for you. I hope it, sincerely hope that it helps you with some of your other issues. I think it's definitely going to make you feel better, give you more energy, mental clarity. I hope that you're able to give the magnesium oxide and the digestive enzymes a try, because I'd like to see and not have so much stomach pain, especially when you're eating right and I'd like to see you go to the bathroom every day. Everybody should poop every day. I know, right? Yeah, they say everybody poops, but they didn't meet you. Crystal, you know what I mean? Yep, yeah, you seen that book? Everybody poops. I have that's been a while. It's because it's a kid's book. All right. Well, Crystal, I'm gonna thank you for doing this and say goodbye, but I really appreciate you doing this. Will you hold on one second for me? All right. All right. Hold on one second. Let me hit stop. Okay, where is stop? Oh, it's in the same place. It always is, right there.

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Matt shares his shocking, symptom-light journey to an unexpected quadruple-bypass—burping to diagnosis, surgery, recovery, family impact—and why proactive cardiac screening can save lives.

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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
Welcome back, friends to another episode of The Juicebox podcast.

Matt Fouse 0:14
My name is Matt Faust and I am a 41 year old type one diabetic who just underwent a quadruple bypass, open heart surgery, completely unannounced and surprised. So that is what I will be discussing on today, this episode,

Scott Benner 0:39
this episode of The Juicebox podcast is brought to you by my favorite diabetes organization, touched by type one. Please take a moment to learn more about them at touched by type one.org, on Facebook and Instagram. Touched by type one.org. Check out their many programs, their annual conference awareness campaign, their D box program dancing for diabetes. They have a dance program for local kids, a golf night and so much more touched by type one.org. You're looking to help or you want to see people helping people with type one. You want touched by type one.org. Nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. I'm having an on body vibe alert. This episode of The Juicebox podcast is sponsored by ever since 365 the only one year wear CGM that's one insertion and one CGM a year, one CGM one year, not every 10 or 14 days ever since cgm.com/juicebox this episode of The Juicebox podcast is sponsored by Omnipod five. Omnipod five is a tube, free, automated insulin delivery system that's been shown to significantly improve a 1c and time and range for people with type one diabetes when they've switched from daily injections, learn more and get started today at omnipod.com/juicebox at my link, you can get a free starter kit right now. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox omnipod.com/juicebox,

Matt Fouse 2:23
my name is Matt Faust, and I am a 41 year old type one diabetic who just underwent a quadruple bypass, open heart surgery, completely unannounced and surprised. So that is what I will be discussing on today. This episode

Scott Benner 2:44
awesome. And Matt, for those of you who are longtime listeners, was on episode 405. How we eat plant based? Oh, Matt, did you have you been eating plant based all this time, and you had heart surgery? What's going on?

Speaker 1 2:58
So, yeah,

Matt Fouse 3:00
I was eating plant based, you know, when we talked 12, that was during covid, and then we had kid number two, who is now going to be five. Wow. Goodness gracious. And, you know, I took a little break here and there in between. You know, busy, two kids, everybody, having a different diet is kind of difficult in the house, but for the most part, we eat plant based in our house, my 10 year old does not eat meat. She'll eat like cheeses, things like that. But generally, very healthy eater, you know, very minimal red meat intake. The only red meat, like, if I decide to eat it will be venison, which is a leaner meat, because I'm you'll laugh. I'm a hunting vegan. I love to deer hunt on my property.

Scott Benner 3:59
So Matt, give people context for that, though. Like, how do you become a vegan, I guess, for At what age? Just so, like, I don't want to rehash your entire other episode, but just give people, like, a quick overview.

Matt Fouse 4:11
Yeah, so it, it gradually happened. You know, I gave up red meat for the majority of the time, and then pork. And then I'm like, Well, I we eat fish on occasion. I We, you know, I live in Maryland, so gotta eat the blue crabs. You know, if maybe once a summer,

Scott Benner 4:33
what makes you think to yourself, like, I'm gonna stop eating meat? Is it a social feeling? Is it, you know, something about how you're you notice with your health, or,

Matt Fouse 4:42
yeah, overall health, I just feel cleaner inside, if that makes sense, like my body feels like it's doing a better job at what it's supposed to be doing. When I don't eat meat, I feel like my inflammation is down the. The brain fog is kind of gone.

Speaker 1 5:02
Gotcha, it is not out of a PETA

Matt Fouse 5:06
animal rights way. Like I said, I am a hunting vegan, so I do kill animals.

Scott Benner 5:13
Do you eat the venison because you feel like, oh, I hunted it. I'd like to eat it, or because you are trying to add some meat in periodically

Matt Fouse 5:21
both. So I grew up hunting as a kid in the sticks of Central Pennsylvania. We we got off a week of school after Thanksgiving to hunt, specifically like in our school district. So I grew up doing it when I moved to Maryland, I kind of continued to hunt. Now I'm in the suburbs of Baltimore. I have, you know, a nice wooded area, like 1000s of acres that I back up to. It just has unlimited deer, white tail deer. Nobody hunts around here. I kind of do my part. You know, you're either going to hit them with your car or I will hunt them, is kind of my thought. And it is a very healthy lean meat, yeah, you know, less fat than, like, beef, okay, it is delicious, but I have my like ritual, like, if I bag of deer during hunting season. You know, you have to got it. I take the heart out, because true schnitzel uses calls for venison heart. So I make schnitzel the night that I get a deer. That's kind of my thing. Okay, the family does not eat the schnitzel, but I would say, out of a year, I may eat meat three to four times. Okay, okay, if that. And then I donate the deer, the butcher, I go to, you can like checklist on it, donate, and they just donate it to local food banks, which is, you know, kind of doing my part.

Scott Benner 7:02
Yeah, that's awesome. Yeah. Remind people how old you were when you were diagnosed. I was

Matt Fouse 7:07
four years old, so that would have been 1988

Scott Benner 7:13
How old are you now?

Matt Fouse 7:14
I'm for I am 4141

Scott Benner 7:18
Matt, describe to me your level of care as a child growing up, etc. Like, what? What were a one CS like through the first 20 years?

Matt Fouse 7:29
Yeah. So growing up, I had an amazing doctor. He did everything that he could do in our small town for me and my sister is also type one. We did what we could. I remember the first glucometer that we got as a family. I used to, you know, pee on sticks to test my sugar as a kid. So you did what you kind of did. We had very crude insulin, cumulon n and cumulon R, which I just look back and I'm like, I have no idea how my mother did it. Right the time of activation was, what, like, six hours or something like that. I think growing up, my a 1c were pretty relatively stable. You know, I think they were usually, like, under eight. When I moved out, I was in high school, 18 years old. I moved to Baltimore. That's when I got my first endocrinologist that that was kind of unheard of in a small town, like an endocrinologist. What? What's that? Yeah, and then I kind of learned the techniques, you know, he's like, you know, every diabetic now is on an insulin pump. You need to be on an insulin pump. And I was doing just, you know, needles and glucometers. Now I'm looping, thanks to listening to your podcast, Penny Fox, my, I have not had an A, 1c, under 5.5 and probably six years

Scott Benner 9:09
for you man, maybe, do you work with Kenny? Or do you, do you mean, like from listening to him in the podcast? Or do you work with

Matt Fouse 9:15
him, just listening like, you know, listening to all the looping in the what is it looping in Fox, in the loop house, or whatever the episodes you have of him? Yeah, kind of learning what to look at. And, I mean, it's kind of down to a science. Now. It's like, I know if I eat this food, what to do, right? It's rare to get high sugars. You know, sometimes you can't help it if

Scott Benner 9:39
you're sick, about a five five? Yeah, I'm at about a

Matt Fouse 9:41
five, five, my last, but, well, so my last a 1c was the lowest I've ever had. It. I had a 4.7 and that was on the blood work previous to going into the hospital. Because, you know, they like to do all their labs before you do surgery. And that was 4.7 Right, jeez. And the surgeon came in who was gonna do the heart surgery, and she just goes, Wait a second, you're diabetic. Wait, but you have a 4.7 that's not diabetic. And I was like, oh yeah. And then she's like, well, we're gonna have you take levamere previous to surgery, we'll do an insulin drip during surgery. But I think you probably know more than the people here at the hospital, so we're going to just let you take care of yourself when you're in the

Scott Benner 10:30
hospital. They said, Listen, I know this is surprising, but there's a guy named Scott. He's got a podcast. There's a guy named Ken. These dudes online, these ladies, they made this algorithm. It's on my phone. Like it must sound crazy to people, you know?

Matt Fouse 10:43
Yeah, I was explaining what I do to the doctor taking care of me in the hospital. Just the internist. He was like, wait, you have a 4.7

Speaker 1 10:55
a 1c, is that? Am I looking at that right? And how do you do that. And I was like, so

Matt Fouse 11:01
basically, there's this group of people on the internet that designs this code, and I just really trust them. It's not FDA approved, and I get this patch of software and I download it on my computer on, you know, it sounds completely bogus, of course. No, no. But he's

Speaker 1 11:20
like, and your endocrinologist is okay with this? And I was like, oh, even better,

Matt Fouse 11:27
he had me give a talk to all the endocrinologists at the hospital that he teaches at. So the sugars are just, you know, I'm like, non diabetic. Basically, that's awesome in that area, this whole thing of I needed heart surgery was complete shock to

Scott Benner 11:47
me. Tell me, Matt, is there, are there heart issues in the family? Or do you think this was earlier diabetes care catching up to you somehow? Is there any, any feeling for what might have happened?

Matt Fouse 11:59
Yeah, there is bad genetic lottery. My mother had a heart attack at I want to say she was like in her 40s. 47 she survived. She's still alive. And her father, she never met him. He died at 39 of a heart attack, which would have been in the, what, 50s, and at that time, like open heart surgery was didn't even exist. So even if he would have caught something, they would have been like, well, sorry, you know that's your heart doesn't work. Yeah, tough luck. Yeah, see you later. And I think my dad's dad also had a heart attack. So jeez, it's in the family which you get that card. It's kind of, you do what you can do and you hope for the best. Yeah, is kind of all you can

Scott Benner 12:53
do. So was this a thing you were keeping track of with a cardiologist? Or, you know, because, I mean, you're coming up on the age where it happened to a great grandfather, it happened to your mom. Like, was this on your radar or no? Today's episode is brought to you by Omnipod. We talk a lot about ways to lower your a 1c on this podcast, did you know that the Omnipod five was shown to lower a 1c that's right. Omnipod five is a tube, free, automated insulin delivery system, and it was shown to significantly improve a 1c and time and range for people with type one diabetes when they switched from daily injections. My daughter is about to turn 21 years old, and she has been wearing an Omnipod every day since she was four. It has been a friend to our family, and I think it could be a friend to yours. If you're ready to try Omnipod five for yourself or your family, use my link now to get started. Omnipod.com/juicebox get that free. Omnipod five Starter Kit today. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox CDE comm slash Juicebox. This episode of The Juicebox podcast is sponsored by ever since 365 and just as the name says, it lasts for a full year, imagine for a second a CGM with just one sensor placement and one warm up period every year. Imagine a sensor that has exceptional accuracy over that year and is actually the most accurate CGM in the low range that you can get. What if I told you that this sensor had no risk of falling off or being knocked off? That may seem too good to be true, but I'm not even done telling you about it yet. The ever since 365 has essentially no compression lows. It features incredibly gentle adhesive for its transmitter. You can take the transmitter off when you don't want to wear your CGM and put it right back on without having to waste a sensor or go through another warm up period. The app works with iOS and Android, even Apple Watch. You can manage your diabetes instead of your CGM with the ever set. 365, learn more and get started today at ever since cgm.com/juicebox, one year, one CGM, no,

Matt Fouse 15:10
absolutely not. I knew heart issues were in the family. You know, my endocrinologist always tests everything he should, cholesterol, all that stuff. It was always within levels that wasn't like, we got to do something. Hit the brakes. We got to send you to a cardiologist tomorrow. The whole thing started of me seeing a cardiologist because, on top of, like, you know, taking care of myself as a diabetic. I'm also a, like, marathon runner. I've run marathons, many I can't tell you how many I've run in the past. So I run. I exercise daily. And while exercising and running, when my heart rate would get up to, like, 130s I would start burping, and I'm like, Oh, this is really annoying, I guess, now that I'm old, I have GERD or something. I went to a GI doctor, and I'm like, Well, I think I have something, based off of me being a professional internet Doctor, I have a hernia or GERD. So they did, did all the tests, stomach scope that came back completely clear. Everything on their end was like, you're fine. We don't know. You know why you would be burping, yeah, while you're exercising, yeah, burping, yeah, yeah. And it was, it was annoying. So I'm really close with my endocrinologist. We're kind of like friends, and he's like, just to, like, roll things out. Why don't we just send you to a cardiologist? So I made an appointment, and this, this wasn't even that long ago, probably now we're going on maybe six months ago from today. Made an appointment. They did all the stuff the cardiologist, amazing. He kind of like, yeah, you have a family history. Your cholesterol is fine, but we'll, we'll send you to do like a cardiac CAT scan. And what that does is, it's very simple test, and most insurances will not cover it. But even out of pocket, I think you pay it might be $200 for the test, and that will show calcification of the heart. And what calcification shows is usually plaque. It's like hardening, and it will just show and it will give them an overall score. It goes by, you know, your heart chambers and the score will kind of be like, Oh, you're you're screwed. You got to go get heart surgery. Or, you know, maybe we should dive into this.

Speaker 1 17:53
Okay, mine was in

Matt Fouse 17:56
the moderate, so it wasn't like alarming, but it definitely made the cardiologist do more testing, so he scheduled a nuclear stress test, which they have you run on the treadmill, and you're hooked up to all these wires that they can read your heart rate and your rhythm, and then they put you in, I think it's like A CAT scan area after you run, and they inject something that makes your heart like glow, and it shows like, hot and cold spots of your heart, which is, you know, shows blockages, because if it's blocked, it's going to be cold. Area is going to be cold. Okay, yeah, yep, yep, that came back abnormal. And I was like, Oh man, holy crap. What's this is annoying? Yeah, I'm thinking, okay, maybe, maybe I have something in there clogged, and they'll put a stand in. It will be good. That failing of the test prompted a catheterization, which is, it's invasive,

Scott Benner 19:00
it's they go up through your groin. Is that that?

Matt Fouse 19:03
Well, now they go through your wrist. Really, though it's amazing technology. You're sitting there. They numb everything. It's pretty painless, honestly. They numb your wrist. They go up through it, and they can they're basically like playing a video game where they can see everything in live time you're watching them, and you're like, oh, wow, that's my heart. Like, in real time, it's, it's crazy, wow. So the the first catheterization, I'm like, Okay, this adventure, it's going to be over today. Like, they'll put a stint in. I'll get back to running without burping. I'll be great. It'll be good. Yep, be happy to have this over. They disappear for a while. Man, what's taking so long? A surgeon, they had a consult, and she's like, Yeah, pretty much all of your pipes go into your heart are completely. Groups. They were like, you know, 90 cents, and I can't tell you, like, the amount of shock, like my wife and I had that day, yeah, well, you're really young. She's like, Yeah, we're scheduled. We're scheduling surgery. Yeah, I was her second youngest heart surgery that she had.

Scott Benner 20:19
Yeah, they were gone so long because they were out looking for a for an ER to pull you into,

Matt Fouse 20:23
yeah, basically. And that's the crazy, scary thing. Like, I'm exercising daily, right? Like, every single day, and come home, I split firewood, I work outside, I mow the lawn, you know, I'm shoveling snow in the wintertime, right? Like, I'm very active and I'm very healthy, like I'm within my body weight that I'm supposed to be. You look at me, and it's like,

Scott Benner 20:50
your measurables. Look, this guy's getting quadruple Yeah,

Speaker 1 20:53
yeah, which was just

Matt Fouse 20:57
like the biggest shock at I was 40. I came home two days before my 41st birthday from the hospital. Yeah, she's like, Yeah, we're scheduling. I got an opening in two days. So I went from, you know this is going to be over, to oh my gosh, yeah, it's quite a recovery. Then I have to stay in the hospital for a week.

Scott Benner 21:19
Let me ask you a couple of questions, though. So you have heart disease in your family, like, and people have been having heart attacks, and you've had type one diabetes since you were a kid. These are two things. These are contributing factors to having heart issues. Like, so does she like? The surgeon, first of all, described what the blockages were like, that, you say 90% blocked.

Matt Fouse 21:40
Oh, that. I think there were more more. Yeah, okay, I don't know how I've survived so long, because i This doesn't happen overnight. This, this is, you know, ongoing.

Scott Benner 21:51
Yeah, Were you tired or No, no, no,

Matt Fouse 21:55
was not. That's what. Nothing. There was no other symptoms besides burping. You know, that's I'm so happy you had me on here, because it's like, I posted this. You know, I'm pretty, like, not reserved with my health, but I don't go out and, like, tell everybody about I gotta, yeah, tell everybody about everything. I usually keep my diabetes stuff to myself. You know, if somebody asks me, like, I'll tell them, but I'm not gonna go blab everything. Sure, I put this on, like, my personal Facebook, I had so many friends message me and they're like, Man,

Speaker 1 22:31
this is just crazy. I made

Matt Fouse 22:33
an appointment with a cardiologist because, like, I just wanted to get things checked out. And I had a couple people be like, I'm so glad you put that on, because it prompted me to make an appointment, and my cardiac CT scan came back elevated. I guess once you're a certain age, you just got a jack Benner like, even if you're not having symptoms, because

Speaker 1 22:53
you could be one step away from hearing those stories of like, man so and so was on the floor wrestling with his kids, and he

Matt Fouse 23:03
just died. You know that that happens every single day, so I'm just so glad that they found it, because I would have been one of those. Can you believe Matt died? Because, oh

Scott Benner 23:15
no, yeah, for sure. Yeah, you people have been like he was in his early 40s. Are you sure about like, that kind of thing, Matt, did they tell you what the blockages are made of. Like, I listen, I'm not a surgeon, or really, I have no expertise in anything. But, you know, we talk about a lot of times where high blood sugars can make, you know, small damaging things inside of veins and arteries. Then your body kind of patches them back over, and eventually those patches create a blockage. But also, there are people who just, you know, through diet and lack of exercise and whatnot, else will will have blockages that are made up more of it's not so much the scar tissue like Did they discuss with you what your blockages look like?

Matt Fouse 23:54
Yeah, the surgeon, she is an amazing surgeon. She told me, when she was doing the surgery, that my arteries were like cottage cheese. She said they just were soupy and falling apart when she, like, was sewing the new arteries in. So basically, you can take care of yourself, but a lifetime of diabetes is going to do damage. You know, with the Think of all the times you're sick every single year, it might be a couple times, but I'm sure when that happens, that you have it scars over it, scars over it, scars of next thing you know, your arteries are crap.

Scott Benner 24:36
You also had, you know, a one sees that for the time were good, but you don't want eight, nine, A, one CS for a couple of decades, which is maybe what you were living with as a young kid. And, yeah, yeah, definitely. And when did you figure out, like, looping? And how long ago would you say, Oh, I figured it out. And my a, one, CS came down and got stable. How old were you then?

Matt Fouse 24:57
I've been looping. I'm trying to. Think I had the first Riley link that was, it seems so crude now, that you had to, like, plug into the, like, USB, yeah, mini plug. So, like, what's that? Five or six years, maybe.

Scott Benner 25:14
But is that about how long you previous?

Speaker 1 25:17
Yeah? No, no, no. So

Matt Fouse 25:20
even previous to that on a pump, like, even when I was just doing shots, I had a one CS in the like, 5.6 5.7 5.8

Scott Benner 25:31
take, like, your lifetime with diabetes in years, and tell me how many years were you in the eights until you found a different like, I'm trying to just figure out, like, how long you were in the eights before you figured things

Matt Fouse 25:44
out. I would say from when I moved out as an adult 18. Okay, so

Scott Benner 25:51
to your first 14, four to 18.

Matt Fouse 25:54
Yeah, it could have been a crap shoot, like, I mean, and it was, this is what it is. You know, I had maybe sevens, eights, I can't remember, but it was, it wasn't fives and sixes.

Scott Benner 26:05
And I want to say to a seven and eight is not an insane. I mean, it's not what you want, but it's not an insane, like, Yeah, I hear people all the time walking around with 10s, elevens, twelves, like, that kind of thing, yeah, not perfect, but also not like you weren't trying, not like you weren't putting effort into it. And then maybe you, I guess that gets coupled with the, you know, the genetic portion of the heart there, there you are. So when they, when she says they're soupy, like, they get replaced. Like, how do they handle? Like, you know, I mean,

Matt Fouse 26:32
she completely needed bypass it. So what isn't working? They took my mammary glands, which is in my chest or not, glands artery, okay, and split that to the two main ones that are, like she said, they're the money makers that keep you ticking. And then they use saphenous veins from my leg and did the other arteries with those, the arteries are supposed to be a lot wider, and they last like a lifetime. But the veins, unfortunately, I think after 10 years, there's like a pretty high risk of needing an intervention, maybe, like a stint or something like that.

Scott Benner 27:18
I was gonna say, meaning another bypass or another, but a stent maybe some way to keep so they expect those to start getting blocked up in about 10 years.

Matt Fouse 27:26
Yeah, and I think what happens is, from my limited knowledge and research, the saphenous veins are not meant for the high pressure of like a heart. I see they're in your legs. They're in your arms. It's this is amazing, like what the human body does. So when they get moved and there's higher pressure of blood that they're used to seeing, they re engineer themselves to like work better. And they thick. They thicken so the walls actually, like, smooth out and thicken, which causes narrowing when that happens, which can reduce blood flow. And, you know, maybe cause issues, occlusions, or just the blood's not going through as fast as it should,

Scott Benner 28:22
eventually get you back to another problem. But that is magical, that they can do that. So basically you're gonna, I mean, you're gonna have a cardiologist forever now, and they'll need to be other interventions in the future at some point. But how do you describe how you feel now versus how you felt before the bypass?

Matt Fouse 28:39
Yeah, that's, that's the crazy thing I do feel like I feel younger and more vibrant. I definitely have more pep in my step. I noticed, like on my my daily hikes or runs, you know, going up a hill, like I just don't feel it anymore at all. I was healthy previous, but I think that was huge in my recovery and everything. But now I'm just like, blasting up hills, and I'm feeling awesome, not crazy. So I'm like, Oh, I guess, I guess maybe I I was feeling it, but I was healthy enough that I just didn't even notice it.

Scott Benner 29:18
When sometimes you get that, like, slow drift away from health. You don't notice the decrease, you know? Yeah, definitely, yeah. You get turned back on like that. Then you're suddenly like, Oh, is that the feeling I was accustomed to? Man, that's and so how long ago was this surgery? And what's the recovery like?

Matt Fouse 29:34
My surgery was May 16. I just fully recovered. They say full recovery is 12 weeks. They cut you open like a clam. They saw through your sternum and like your ribs, spread you, and then they do the surgery, and then they basically weld you back shut. But they put these, like little butterfly screws and clamps around it and then stitch you back up. The, honestly, the worst part was probably, like the, you know, the broken bone part, which wasn't even that bad, because they modern technology, they use nerve blocks in the surgery, which I think wear off when you're recovering, so, like they last basically the full time it takes to heal. When I was 19, I was in a mountain biking accident. I broke my collarbone and shoulder. That was probably 10 times worse of a recovery than my open heart surgery, which is completely crazy

Scott Benner 30:48
to me. Yeah, it's crazy. Yeah,

Matt Fouse 30:51
it's just nuts. And now this is me. I know other people probably have it different, but the day after surgery, I was in the hospital, and I was so bored, and they make you get up and walk to prevent blood clots, right? And I was so bored in the hospital, they they kind of give you a test to see that you're okay being on your own to stand up, yeah. And I had passed all of these the day after surgery, I'm doing laps in the hospital with my Apple Watch on. I did 2.6 miles of walking in the hospital because I was so bored. The doctors were like, you definitely win an award out of any patient we've ever had.

Scott Benner 31:40
I want it out, yeah, trying to get going.

Matt Fouse 31:43
Yeah, the recovery was fine, like it was, besides not being able to lift anything or drive,

Scott Benner 31:50
that was the most annoying thing. Were you on pain meds during the recovery?

Matt Fouse 31:53
Stop taking pain meds the second day, so they kind of just give them to you, yeah, like, after surgery, and then the nurse will come in and be like, how's your pain on one to 10? I'm like, honestly, I'm fine. They just stopped them and that, that was it. Anything's besides, like, Tylenol. It was not really happening, man,

Scott Benner 32:17
I I have to tell you how Arden had her her tonsils and her adenoids taken out a few weeks ago, and it's about a pretty painful thing for adults, because apparently the swelling in your throat hits a nerve that radiates like significant ear pain. They prep you for this is very unpleasant, and the recovery between, like days five and nine or even worse than they are, you know, in the first couple days or in the end. And on top of that, you've got like, a sore, you know, a very sore throat. They can't tie off the tonsils and they take them out, so there's just this, like, scabbing that happens the back of your throat. The whole thing is kind of horrifying. But they gave her a Percocet right thing. It was Percocet with acetaminophen, I if I'm not mistaken, and she had to use it, like, Arden. Arden's pretty tough. Like, I think when she started, she thought, like, oh, I won't need this, like, this. But pretty quickly she was like, okay, she took it the way she was supposed to. So she ran out of it, because they only give you, like, a week's worth in the first go. And so like, a day or two before it's gonna run out, we called them and said, Listen, you know, this has been pretty painful, and she's gonna need more Percocet. And you'd think that there'd be, I don't know, with all the talk in the world about, like, you know, there's painkillers are everywhere, and it's ruining America, and blah, blah, blah, like, you know, a 21 year old calls up and says, Hey, I need more Percocet. You'd think you'd need to talk to the doctor. No, the lady that answers the phone, and five minutes later, you've got a text from Walgreens. Hey, we're refilling your prescription. I'm like, but they do just hand that out. Like, yeah, you know what I mean? Like, it's interesting. You know, I was surprised that there weren't, but Matt, you didn't need it after having your chest cracked open because you're saying there was a nerve block that was working,

Speaker 1 34:00
yeah, so

Matt Fouse 34:02
the surgeon told me she put a, I don't know where or how this works, but she said, Oh, we used a nerve block so your pain should be less. And honestly, it was, you know, broken bones hurt. I did not feel that bad. It was kind of nuts.

Scott Benner 34:21
Oh, you got a good doctor. Then say her name. Please help people out.

Matt Fouse 34:25
Dr Harrison was her name. She is absolutely amazing. Like, in my like, doctor's visits and follow ups and stuff, anytime that a doctor or like, somebody at like, the cardiac rehab place would hear that she was a woman surgeon. They were like, kind of shocked, really. And I was like, Oh, this must be, yeah. I'm like, this must be pretty rare. So we googled it. And I guess in the United States, there are about 4000 cardiac thoracic. Surgeons. And now these surgeons are like, top of the top of the top of surgeons like to be cardiac, thoracic. There's so many things you have to be good at. There are, out of those 4000 the internet said there was less than 100 of them in the United States are women like, Oh, my goodness. I can see, I can see why people are like, what? But yeah, she she was amazing. When she came in to do the consult, when I had my catheterization, she like, very excitedly, oh, this is my favorite surgery to do. And I was like, Well, I'm glad I can help you, you know,

Scott Benner 35:43
yeah, so Matt, I have to tell you, you've said a couple things that I've looked up while you were talking so about the nerve block. So there are different kinds of nerve blocks they could use during this surgery, that some of them can last between 1872 hours, some up to five days, if the catheter stays in longer. It's pretty awesome. And I did look up the thing just now about the surgeon. And no kidding, yeah, study analyzing the Medicare provider utilization and payment database identified 2435 practicing cardiac surgeons in the US. By 2019 of these, 122 were female, representing 5% of the total in 20. Yeah, it's crazy. In 2013, of the 2076 only 3% were female. So there is an increase happening, but very slowly. I wonder what it is about that specialty that doesn't lend itself to women going after

Matt Fouse 36:36
it. Yeah, I don't know. One of my really good friends, his father was a cardiac thoracic surgeon, and he was telling me, like stories that his dad told him about going to, like school and his learning and stuff,

Speaker 1 36:52
the stuff they have to do, like they basically have to be able to thread

Matt Fouse 36:58
like multiple knots in like seconds with their eyes closed, like with tweezers and things, which is, I'm like, Oh my gosh, like,

Scott Benner 37:06
I dropped the tweezers. They'd be like, god damn it.

Matt Fouse 37:07
And I noticed, like a lot of the follow ups, Dr Harrison always would have young female, like high school girls or college girls following her, because, you know, they were interested in possibly being a surgeon. I was like, oh, you know, like, that's awesome. She would always ask, Oh, this is my daughter's friend who was thinking about maybe becoming a surgeon. She's in high school. Would you mind? And I'm like, No, have at it.

Speaker 1 37:35
Like, yeah, teach the young, yeah.

Matt Fouse 37:37
What's your scar? Like? The scar healed over. Very nice. It's a little reddish, and it's a line that goes a little bit below my nipples, up to maybe like couple inches above, like my pecs, so maybe like five, six inches. And then I had a scar on the leg where they took the vein, which is completely healed over. You can't even hardly see anything.

Speaker 1 38:09
And then my left

Matt Fouse 38:12
chest is healed over. That's where they took the mammary. But, yeah, the recovery was it was the best possible situation. My follow ups have been all good, and I just hope for the best to come. You know, you never know you could be one day away from kicking that bucket.

Scott Benner 38:30
Matt, this doesn't, does this change your overall life expectancy at all?

Matt Fouse 38:33
The surgeon said no, because I said that. I said, Well, you know, I'm a realist, and I googled the average life expectancy after open heart surgery, and I think Google says 18 years. So to me, that puts me at 58 which is pretty young to die.

Scott Benner 38:57
59 was that, when you did the Googling, did you Google that you hadn't had a heart attack, but you had the quadruple

Matt Fouse 39:04
I did not, but I asked this to my surgeon, and she said, Yes, but those stats are they're taken from a group where the average age is at minimum 20 years higher than you. So I think the the average open heart surgery patient is probably mid 60s,

Scott Benner 39:27
in their 60s already. Yeah, yes. There's no way for them to really track, yep.

Matt Fouse 39:31
If you look at that, it's like, well, yeah, that makes sense. That puts them near 80 when they die. Or, you know, seven, late 70s. Sure, you know, I got, I got a lot going against me. I got a diabetes since I was a young child, and a history. But now I will be seeing a cardiologist at minimum once a year. They will be running all the tests that they do. I'm now. On, oh my goodness, I have a pill box now because I'm on so much medication. I'm on statins, anti clotting drug I'm on, oh gosh, I can't even remember all the things I'm on.

Scott Benner 40:14
But what do they got you on warfarin or something like that for blood thinners?

Matt Fouse 40:19
I'm on aspirin, just aspirin, just like baby aspirin, yeah. But the other stuff, I think, is to prevent clotting. And then I was on a beta blocker, which makes your heart pump lower. I think the main objective of that is to give your heart rest for recovery, like after the surgery, okay, and I was on that and I would just feel so painfully sluggish, like my life was in slow motion, like I was wearing cement shoes, and my reaction time just felt like way off on the beta blocker, Which makes sense, because it, yeah, it slows it slows everything. It slows your heart rate. But yeah, I was feeling awful on that, and I noticed that during, like, my exercise, I just felt horrible because my heart wanted to do what it's supposed to do, and wanted to be that, you know, 160 versus 105, so my cardiologist took me off of that, and I feel so much better after being off of the beta blockers, good, but I will probably be on statin for the rest of my life. You know, the internet says, seemed like pretty much any person who's had type one for more than, like, 20 years, I think they just put them on it now, kind of prevent what happened to me.

Speaker 2 41:50
Yeah, yeah, geez, but this is the

Matt Fouse 41:52
first time I've been on one since the surgery.

Scott Benner 41:56
Talk a little bit about how it impacts the rest of things that can mean you're married, right? And you've got young kids, and, you know, what's the kind of psychological side of all this?

Matt Fouse 42:06
That was a wild ride. So at first, everything's just a shock. My wife and I, like, I it didn't even hit us, like, even after the surgery, it's like, Wait, what just happens? Yeah, quick. I remember the morning of the surgery. I think my skirt surgery was scheduled at like eight, but they had you report at like 6am to, like, prep you right? I remember going in and hugging both of my kids because I'm like, I might not see them again. The surgery has a

Scott Benner 42:41
sorry, no, no, take your time. Matt, seriously,

Matt Fouse 42:45
it's got, it's got, like, a one to 3% survive. The rate of death is like one to 3% which is pretty high. I mean, it's not high, but it's like, well,

Scott Benner 42:57
you know when it's high, it's when it's you, this could happen. Yeah, yeah, when, when did you have in the surgery? That seems like a pretty big number. Yeah.

Matt Fouse 43:03
And I'm like, so if you line 100 people up, which is not many people, three of them might die during this surgery. Yeah, that's a lot more than, like, you look at the statistics for, like, dying in a car wreck.

Scott Benner 43:15
Well, also you, you're sitting there at that point too, thinking like, this is, you know, happened to other people in my family. I have had type one diabetes for 40 years. Like, maybe I'm skewing a little closer to those three people than I am to the 97 Yeah, exactly.

Matt Fouse 43:29
You know, I was previously healthy, but it's like, well, I got the diabetes and my stuff so clogged. You know, anything could happen. I could throw a clot to my brain, whatever. It could all go downhill

Scott Benner 43:42
quick. Yeah, surgery is not simple, and being even just being put under, you know, is dangerous. So, I mean, I can tell. I mean, I can, I completely understand going to your kids and being like, hey, you know, you know, I was trying to bum me out, Matt, but they're so young. 10 years from now, if you pass away in that surgery, they're not even going to half remember you. You know what I mean, like, that's the thing you got to, like, stand in real time. Yeah, yeah, think about that,

Matt Fouse 44:04
yep, yeah, exactly, yeah. But that, that was that morning, and I was like, Man, this is really hitting me now,

Scott Benner 44:12
yeah, which one of these scum bags is gonna hit on my wife? You know what I mean? Like, you know of your butt, Yep, yeah, of your buddies. You're like, which one of these guys I know is, like, gonna wait like, a year and a half and then, like, you know, like, hey, you need help with something you like, dirt bags.

Matt Fouse 44:26
Yeah, exactly. But my wife was amazing through all of it. My mom came down, watched the kids while my wife stay with me every single day in the hospital. For, you know, the amount of time that she could during visiting hours, I got out, and then my wife, just like, she had her like, Okay, I was strong for the kids. And then she just like, she had, like, a week of like, holy, you know, yeah, she was just emotional. Crying because it like you have a release. Eventually you're like, everything just kind of, lets go, right? I remember I was really emotional in the hospital, and I was like, I just think about, like, our kids, like, what am I putting them through right now? And she's like, well, the ones for she's such a dangling she's not going to remember any of this, like you're right?

Scott Benner 45:24
And then I have a 10 year, 10 year old too, right? And then go ahead, I'm sorry,

Matt Fouse 45:28
yeah, I have a 10 year old. I think she's still young enough. She didn't really grasp the seriousness of the situation at the time the day my surgery was scheduled. I work for a professional baseball team, the Washington Nationals, and I'm their barista. So we get, like, free tickets anytime we want to the games the nationals were playing the Orioles, which is big because it's like two local teams. They were coming up to Camden Yards. We had the VIP tickets like that. You get to go on the field, because I work for them, and we're going to get to meet all the players. I was like, I had to come home from the catholicization and be like, I'm sorry, honey, but we can't go to the game. And she immediately was like, oh. And I was like, because I'm going to be on an operating table getting split open like a clam while they reroute my arteries. I think all she thinks about is like, of course, she loves me, but she's still 10, and she's like, Oh man, she completely understood it. Though we were not going to that game that night after the surgery.

Scott Benner 46:40
Listen The saddest thing you said so far is that you work for the nationals, who have been really terrible this year, and that must be sad.

Matt Fouse 46:47
Oh, bless them. Yeah, they're all great guys, and they're doing the best they can.

Speaker 1 46:55
Yeah, it's a little

Scott Benner 46:56
bit rough. Matt, what do you do for the team? I'm their barista. So like you wrote, do you wrote? I do, yeah, yeah. That's so cool. Tell me about it. Tell me, please, yep.

Matt Fouse 47:09
Only just work for the nationals. Like they're I work for the nationals, but any game that they have that's early, usually, like the one or three o'clock games that they like to be caffeinated, because, let me tell you, baseball players, they get paid a lot, sure, but I see what they go through because I'm friends with a bunch of them. They if they have a one o'clock game, they usually start reporting at 7am for these games, and they're studying the next teams, whatever they study, I guess they're like, pitches, their percentages, stuff like that. Yeah, they do stretches, they do practices, they do all this stuff. But yeah, so I caffeinate them. I also have people that work for me. So a lot of times the visiting teams were in the, like, Major League Baseball vendor network. So if they're traveling through Camden Yards or Nationals Park, they can choose to hire my company to bring an espresso bar and caffeinate them. So a lot of times I'll have one of my baristas doing the visiting locker. And like last was it two weeks ago. We did the Milwaukee Brewers at the same time that I did the Nationals. So I'm just basically making coffee for baseball players. Is what my job is.

Scott Benner 48:32
That's a pretty cool down, down to a team. That's a pretty cool job. Listen, my kid never played professional baseball, but I can just tell you that prepping for a college game is a day long experience. It's, it's a lot more work. They don't just wander out there and like, you know, stretch your shoulders twice and get going. It's a lot, you know, really. And you can see these guys now are all taking much different care of their bodies than they had in the past. You know, they're eating differently, cooking differently. That all takes time too. So, yeah, but listen, and the Nationals, oh my goodness, yeah, yeah. By the way, you're better than the Braves this year. That was surprising, I imagine,

Matt Fouse 49:10
Yep, yeah. That is crazy. That is just crazy to me, how

Scott Benner 49:14
that happens. It really is. Well, listen, I love baseball. It's so cool that you get to are you even there for the games, or are you just there earlier in the day? How does that work with your time there?

Matt Fouse 49:24
Usually I'm just there earlier. I can go to pretty much any game I want to. I just gotta tell the manager that deals with that. Hey, can you put me on the list? And he'll put me on the so every major league Park has a friends and family section that they will not sell public tickets to, okay? And that section is for friends and family or, like anybody that's on the list, all he's got to do is put me on the list, and then I can go sit. It's it's usually always like behind home plate, up and over to the first base side. You. But the thing is, it's like, well, I got there early. I was working all day, and now I have to wait two hours and then sit through a long baseball game. So usually I don't if they're anywhere I want to see them. I can also go to the games. So like, if they're in Camden Yards, we go and I can bring family, friends, whatever, pretty good perks of the job. I guess that

Scott Benner 50:28
sounds like a great job to me. Actually, that's awesome. I would like you to teach me how to make coffee so I can show up and do that be seriously great. And were you able to let me definitely fun. Yeah. I'm gonna finish up with you by asking this, like, how long were you out of work, and how quickly were you able to get back? And do you notice any deficits at this point? After the procedure,

Matt Fouse 50:46
I could not lift anything over I think it was eight pounds for the first six weeks. And then after six weeks, I had a follow up, and I think at that point your bone is healed enough that you're kind of good to go. You just kind of have to be careful. So when I went to the appointment with the surgeon, she was like, yeah, just listen to your body like you don't really have any lifting restrictions anymore, but if something feels like you shouldn't do it. Listen to your body. Well, I took that as okay, this week, I'm going to run 26 miles, and I'm going to split four cords of firewood. Yeah, and that was the worst decision I could have made, because I think that set me back weeks in my, like, overall recovery, because last, like I said, last week was on my official, like, 12 weeks. But I think I definitely was set back because of that. I just felt like garbage for like, two to three weeks after that, and I was like, it's so funny. My wife is not a naggy wife whatsoever. You know, she's not the like, you shouldn't have done that. I said to her, I'm like, Why didn't you say anything to me? And she's like, I was watching you split firewood from the kitchen window. And I said to myself, he should not be doing that probably. And I'm like, Why didn't you say anything?

Speaker 1 52:25
I was like, it's your fault. You weren't nagging enough.

Matt Fouse 52:29
My gosh, that was pretty much, you know, I think it's 12 weeks. Everything is technically like your bone is fused together.

Scott Benner 52:39
You should have, you should have followed the instructions. Matt, yeah, okay, try listening next time. I know, yes, that's crazy. Well, listen, I am. I'm very happy that you're okay. I That burping saved your life. I think, I hope everybody picks a time in their life where they say to a cardiologist, can we just get a look in there? I know. I think about it all the time. I genuinely would like to do that. And it does feel weird to go to somebody and say, Look, I'm not having any problems, but I am older, and I'd like you to look. I think even I've got to get over that. I'd like a little, you know, a little look around. I don't know what they do, Echo, look around, some sort of an imaging. I want to know if there's anything in there brewing. No pun intended. Yeah, yeah, yeah.

Matt Fouse 53:20
I think it is so important, like, if you are type one diabetic and you've had it for a good amount of time, even if you don't have symptoms, you can start. You go to your doctor, you say, I have no symptoms. I want to do a cardiac CAT scan. Insurance might not pay for it. You pay out of pocket. It's not that expensive. Like, even out of pocket, it takes a minute and a half to fling you through this thing that will show if you have a problem, like that will show calcification, and that could save your life. Like, I think it's worth diving into. Worst case, you blew however much the it cost for it, but it's worth doing that versus being that story of like, guy died wrestling with his kids playing on the floor. You know? Yeah, that's what I'm hoping you know, just this story can get across to people, like, dive into it and like, take a look, look at have a look.

Scott Benner 54:26
I share periodically. But my buddy Mike, who was diagnosed when we were, you know, 18 ish, like, at the end of high school, and never really, kind of came along with modern methods to take care of himself, till it was a lot later in his life, and he ended up on dialysis, and then one day, like he just, it is exactly the way you described. He was sitting and talking to his wife. They were talking about dinner. He stood up to make dinner, and stood up and fell right over again. And that was just sort of it. Yeah, I sometimes think that, you know, the rescue squad did him a disservice by by saving him in that moment. And then he, you know, laid in a bed for a few. Days before his heart gave out the rest of the way, because there was nothing they could do for him, because the damage to his heart was significant from his his lifetime of, you know, higher blood sugars, and that pretty much is the beginning the end of it all. On top of that, kidney dialysis is is hard on your heart, too. So he had a he had that double whammy going for him. Yeah, yeah, yep. I want to make your point through his point, which, if he was here, he would tell you that the day before this happened to him, he did not think he was about to have a heart attack. Like, that's not what. He did not see that coming. So I think that really should be the takeaway, honestly,

Matt Fouse 55:35
yep, yep. You might not see it coming, but it might be coming. So do what you can, go

Scott Benner 55:41
look for it. Nothing wrong with peeking around the corner to see what's coming and maybe get ahead of it a little bit. You know? Yeah, definitely not at all. I appreciate you sharing this story, and I wish you nothing but success. I know there are going to be a few people that are going to laugh because you had a plant based diet and then had heart issues, but I don't think that's got one thing to do with the other.

Matt Fouse 55:58
Yeah, and the marathon runner a day, I know.

Scott Benner 56:02
Listen, it's like, I ran a lot, and I never ate meat, and then, by the way, I had to have a quadruple bypass. Like, yeah, yeah. Not funny, but, you know, there's going to be some irony in there, yeah, that people don't, maybe don't jive with, but nevertheless, I'm gonna have to say goodbye because I'm out of time. But thank you very, very much again for sharing this with me. Thank you, Scott, that's a pleasure. Hold on one second. Okay, yep.

Touched by type one sponsored this episode of The Juicebox podcast. Check them out at touched by type one.org on Instagram and Facebook. Give them a follow. Go check out what they're doing. They are helping people with type one diabetes in ways you just can't imagine. This episode of The Juicebox podcast is sponsored by Omnipod five. Omnipod five is a tube free, automated insulin delivery system that's been shown to significantly improve a 1c and time and range for people with type one diabetes when they've switched from daily injections, learn more and get started today at omnipod.com/juicebox at my link, you can get a free starter kit right now. Terms and Conditions apply. Eligibility may vary. Full terms and conditions can be found at omnipod.com/juicebox omnipod.com/juicebox, are you tired of getting a rash from your CGM adhesive? Give the ever since 365 a try. Ever since cgm.com/juicebox beautiful silicone that they use. It changes every day, keeps it fresh. Not only that, you only have to change the sensor once a year. So I mean, that's better. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast. If you're not already subscribed or following the podcast in your favorite audio app, like Spotify or Apple podcasts, please do that now. Seriously, just to hit follow or subscribe will really help the show. If you go a little further in Apple podcast and set it up so that it downloads all new episodes, I'll be your best friend, and if you leave a five star review, ooh, I'll probably send you a Christmas card. Would you like a Christmas card if you're looking for community around type one diabetes? Check out the Juicebox podcast. Private Facebook group Juicebox podcast type one diabetes. But everybody is welcome. Type one, type two, gestational loved ones. It doesn't matter to me, if you're impacted by diabetes and you're looking for support, comfort or community, check out Juicebox podcast type one diabetes on Facebook. When I created the defining diabetes series, I pictured a dictionary in my mind to help you understand key terms that shape type one diabetes management. Along with Jenny Smith, who, of course, is an experienced diabetes educator, we break down concepts like basal, time and range, insulin on board and much more. This series must have 70 short episodes in it. We have to take the jargon out of the jargon so that you can focus on what really matters, living confidently and staying healthy. You can't do these things if you don't know what they mean. Go get your diabetes to find Juicebox podcast.com go up in the menu and click on series. I am here to tell you about juice cruise 2026 we will be departing from Miami on June 21 2026 for a seven night trip going to the Caribbean. That's right. We're going to leave Miami and then stop at Coke. Okay, in the Bahamas. After that, it's on to st, Kitts, St Thomas and a beautiful cruise through the Virgin Islands. The first juice Cruise was awesome. The second one's going to be bigger, better and bolder. This is your opportunity to relax while making lifelong friends who have type one diabetes, expand your community and your knowledge on juice cruise 2026 learn more right now at Juicebox podcast.com/juice, cruise. At that link, you'll also find photographs from the first cruise. The episode you just heard was professionally edited by wrong way recording, wrong way recording.com.

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#1652 Save Levemir

You can always listen to the Juicebox Podcast here but the cool kids use: Apple Podcasts/iOS - Spotify - Amazon Music - Google Play/Android - iHeart Radio -  Radio Public, Amazon Alexa or wherever they get audio.

Allison Smart, Alliance to Protect Insulin Choice president and T1D mom, on fighting to restore Levemir via biosimilar—why detemir matters, regulatory roadblocks, patient choice, and real-world impacts.

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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
Welcome back, friends. You are listening to the Juicebox podcast.

Allison Smart 0:14
My name is Allison smart. I'm the president of the Alliance to protect insulin choice where you want to get a biosimilar of levimer to the market. I'm also the mom of a teen with type one diabetes.

Scott Benner 0:29
This episode of The Juicebox podcast is sponsored by skin grip, durable skin, safe adhesive that lasts your diabetes. Devices, they can fall off easily, sometimes, especially when you're bathing or very active. When those devices fall off, your life is disrupted, and it costs you money. But skin grip patches, they keep your devices secure. Skin grip was founded by a family directly impacted by type one, and it's trusted by hundreds of 1000s of individuals living with diabetes. Juicebox podcast listeners are going to get 20% off of their first order by visiting skingrip.com/juicebox 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 health care plan or becoming bold with insulin.

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Allison Smart 2:04
My name is Allison smart. I'm the president of the Alliance to protect insulin choice where you want to get a biosimilar of leva mere to the market. I'm also the mom of a teen with type one diabetes, real.

Scott Benner 2:16
How did you start getting involved in this?

Allison Smart 2:19
Well, should I start

Scott Benner 2:20
at the beginning? I think that might be the best place. Yeah, alliance to protect insulin choice.org. Right? I just typed in alliance insulin, and you came right up. That's very good marketing. Good job.

Speaker 1 2:33
I'm glad,

Speaker 2 2:34
wonderful. Tell me your story.

Allison Smart 2:36
Okay, almost four years ago, my then 13 year old daughter was diagnosed with type one diabetes the first few months, I think are similar. Most people that are diagnosed, you're just fumbling around trying to figure things out. Sure, hated the wide blood glucose variations. You know, just felt calmer when things were in a narrower range. And started doing a ton of research. I researched the different types of levermere insulin. You know, it's fascinating. At diagnosis, we the physician said, find out what your insurance will cover, and we'll make it work. But we looked into it, and there's actually real differences between the basal insulins. And I just found levamire, and we started using that, and we made some lifestyle changes, and for the next several years, things were really going quite well. We really felt like, you know, things are dialed in. My daughter's a tennis player. Plays tennis nearly every, every day. We had little disruption to her tennis from type one. And then November of 2023, we heard the announcement that Novo Nordisk said their discontinuing levamira from the US market, effective December of 2024, and that's when I started calling people. I said, of course, of course, someone's going to fix this. And called insulin manufacturers and pharmacists and even legislators and, you know, advocacy organizations, and said, you know, of course, we're going to fix this, right? And I learned pretty quick that no one was going to so I connected with many around the country and even around the world, and we started this 501, c3 nonprofit called alliance to protect insulin choice, and that started the journey. So it's been a year and nine months,

Scott Benner 4:18
I have questions. So tell me what year was your daughter diagnosed? 2021, 21 How old was she at that point? 1313, does she use MDI still today?

Allison Smart 4:29
Yes, she does. She did try a pump for several months. We did it for three months. And for her, I know everyone's different. It's all about you figure your own management, right? For her, it worked great during the week, but when she played, she likes to play in tennis tournaments on weekends. That's common for us, and we just couldn't figure out how to keep her blood glucose in that narrow range that we're able to reach with levamire. So we went back to MDI, and it's been great.

Scott Benner 4:54
Okay, so she's had diabetes now for a handful of years. You started with Levites. You had some success with it. So for everybody listening, why can't you just use Lantis?

Allison Smart 5:05
So we did use Lantis the first about four months, and then I researched it and asked to switch to levimere. We did try basal Glar which is still Glargine. It's a biosimilar of Lantis. We tried that last year for a few months, just again, to see if we could easily make the switch. And again, it was tough. We keep things in a tight range with a menstrual cycle and with athletic activity, we're able to slowly move levamere up and then back down through a typical cycle for her. And she has less than 1% lows. She just it's excellent management, and we have a more difficult time with that, with clargen,

Scott Benner 5:42
okay, and when you were on a pump, it worked all week, but it didn't work on the weekends. What pump were you using? It was the tea slim, and we're using it out the algorithm we used basal

Allison Smart 5:53
IQ, and that's also been removed from the market. I didn't the thing I didn't like about control IQ was the 110 target, because she feels best when she's lower than that, and that's why we were using basal IQ. But then on tennis tournament days, we'd try and figure that out, and it just was super difficult

Scott Benner 6:11
for us. Okay, so my daughter used levamire. Now my I'll give you some background here. My daughter's 21 now, and when she was first diagnosed, they gave her Lantus, and no, they gave her, yeah, it's been so long ago Allison. I don't really remember the pathway to it anymore, but we ended up with leva mere. We had to split it. We would always split it, because we found it didn't really last 24 hours. And so we'd give her half her dose of leva mere every 12 hours. And that you know worked well for us. Do you have any idea what it is about the injectable basal insulin that you're choosing that makes levimir? Like, I mean, because this is a pretty big thing you're doing here, right? Like, you started a 501, c3, you're out there swinging hands trying to get them to keep making levamire. I don't imagine they're going to. Maybe you'll tell me you're having some success, we'll find out about that they're phasing it out. Most people use what traceba Now, like those kind of more modern injectable basal insulins that kind of last more than 12 hours. The problem with leather mirror was it didn't last 24 hours. The problem with Lantus is that it doesn't quite last 24 hours. But are you using that somehow to your advantage? Is there something about the profile and the duration of levemere that is advantageous? Can you explain to me why it's more successful for you?

Allison Smart 7:29
Yes, I love that question. And first of all, I just want to address something else you said, people think we're trying to get Novo Nordisk to switch course and continue to make this that's not our goal. That's not going to happen. We want this manufactured by another manufacturer, as a biosimilar, as a generic. Okay, we would like Novo Nordisk help. So far, they're not helping, but if they would, and we are communicating with them, if they would assist, there are several different ways they could assist. And I could go into that if you want, but I want to go back to your other question of why we like levimer. So exactly, levamire is usually split. For people, the flexibility of it that's seen as a drawback for some is the huge advantage that we absolutely love. So most people that use levimer use it twice a day. Some even use it three times a day, and there are some that use it once a day. And I'd like to just go into that a little bit, please. So leave me a last one injection lasts approximately eight to 14 hours, which is awesome. So, and just an example I was, I've been to DC, I mean, 11 times in the last year and a half, spent a lot of time in Senate and congressional offices. And there was one aid I talked to, and she said, I just had a baby last year. I had gestational diabetes. I used levimer. I took my injection at night. It was perfect, because I only needed it at night. I didn't need it in the day, and it wore off when I didn't need it anymore. So that's just one example. And I do talk to women who are diagnosed later with Lata, late in autoimmune diabetes in adults, and some of them will go for a while without needing insulin, and then when they start insulin, I talk to some women who love levamire, the same reason they only use it once a day, because likely these women only need it once a day. I love the twice a day dosing, because when my daughter's insulin needs start changing, we can see that, and we can bump it up faster so and there's not the overlap. So most people that use large gene, which Lantus, basal, Glar assembly, even to Hao, is extra strength glarging. But I'm talking about like Lantus. Some people do split it, but there's a little more overlap. It doesn't sure take action right away, and traceba, most people take that once a day, but it lasts, you know, 42 hours. So there's a much longer tail. It's difficult with traceba to make quick changes. People that like pumps, we use levimer A little bit like a pump. I mean, I know that you've said you love that you can, you can kind of mess around a little bit and try a little more, a little less. That's exactly we've just learned. This trend with leva mare, to me, I picture it like riding a boat. On a little gently rocking wave, and we will rock up. I don't make quick changes. We make slow changes, but if I can see the night before it just wasn't enough, I'll bump it up for the day, you know. Or vice versa. We have teen boys. It's pretty common that when some of them that have pretty tight control have much greater insulin needs in the day versus the night or vice versa, and they love that ability to to titrate levamere to the those needs. So I guess, in a nutshell, what some see as a disadvantage, that it's got a shorter time of action, is a huge advantage. For many of us.

Scott Benner 10:35
It's a tool, and you use it in a very specific way, exactly when you tell this to people, I'm imagining that they respond to you and say, Well, yeah, you tried basal like you and, you know, but you know, there's a lot of new algorithms now you don't want the target lower. Try the twist pump at Target slower. Like, is that what they're responding to you with? Instead of saying, like, I want to help you figure out a way to keep this tool that you have, that you that you use and love, are they just trying to give you other ways? And if that's happened, have you had any quiet moments by yourself where you thought maybe I am fighting the wrong fight and I should just try this again? Or are you, I guess I'm wondering how you got to this level of, gosh. What's the word I'm looking for? Like, I don't know, enthusiasm about it. Like, yeah, what's got you dug in

Allison Smart 11:19
for sure. Love that question. So she hasn't wanted to try an Omnipod and and for a couple reasons. And my feeling is she's going to need insulin for the next many decades. I know people will say that often. You know, we'll try this other bumper, try this other algorithm. You'll get great control. I know we could probably do that. We probably could dial it in. To me, it comes down to choice. And you've talked about this before, I think if there are good options, we should have good options. And the conversation that is often the response I get in the diabetes community, outside of the diabetes community, I don't get that at all, but it goes further. Even people that use insulin pumps need backup, long acting insulin I know there are people who have been able to successfully use a pump every day for 10 years, but I have many more who say I used to pump great. I can't anymore for whatever reason. We could go into that if you want, but I just think we need multiple options of backup insulin, even for people that use pumps. So to me, and here's the other bigger issue, this could happen with anything. What's to guarantee tracebo will stay on the market? You know what's to guarantee one pump manufacturer will stay? I just think in this issue, we have a there's a company that wants to make this. They've been waiting to make it. What's in the way is the regulatory system. It's so difficult and expensive to get a generic to the market that it's almost cost prohibitive. And I just think that needs to change, because we are heading into a world where our option is glarging And just one other thing I need to mention. So insulin manufacturing has been dominated by three manufacturers. It was two for a lot of decades, and then the last couple, it's been three. That's shifting. Two of the three insulin manufacturers now make weight loss drugs. They are not as focused on insulin anymore. So especially Novo Nordisk makes 52% of the world's insulin. Yet they're sending the message. They're saying we are consolidating our global insulin portfolio. So new manufacturers are coming to the market. We know of at least six manufacturers who are bringing generics, biosimilars, of insulin, to the market. They are all working only on Glargine and on aspart and lispro. Aspart and lispro are fast acting cube log and novalog. Yeah, the only long acting generic coming to the market is glarging. So this is a problem a company wants to make it. Why can't we figure this out? And that's what I'm doing. What company wants to make it? So it's a small company. They're called our bio. They have not they've been working on bringing insulin to the market for about six years. They haven't yet. And so then the comment I often get is, why don't you get, you know, an existing insulin manufacturer, and we have talked to most of them, and most of them don't want to do dedemere. So dedemere is the generic name for levere those though there's no generic. And that's a big question. We can go into that if you want.

Scott Benner 14:04
My question is, why don't they want to, like, take yourself out of your predicament for a minute? Because now you're pretty steep in this. So you must understand it from a lot of different angles, right? Nobody doesn't want to make something they can make money with. So is there just not a lot of users for it, or are you seeing them just say, kind of blindly, well, there's more modern, better insulins that last longer, we're going to focus on them, like, Where does their focus seem to be when you talk this episode is sponsored by tandem Diabetes Care, and today I'm going to tell you about tandems, newest pumping algorithm, the tandem mobi system with control iq plus technology features auto Bolus, which can cover missed meal boluses and help prevent hyperglycemia. It has a dedicated sleep activity setting and is controlled from your personal iPhone. Tandem will help you to check your benefits today through my link, tandem diabetes.com/juicebox, this is going to help you to get started with tandem. Smallest. Pump yet that's powered by its best algorithm ever control iq plus technology helps to keep blood sugars in range by predicting glucose levels 30 minutes ahead, and it adjusts insulin accordingly. You can wear the tandemobi in a number of ways. Wear it on body with a patch like adhesive sleeve that is sold separately. Clip it discreetly to your clothing or slip it into your pocket. Head now to my link, tandem diabetes.com/juicebox to check out your benefits and get started today, you can manage diabetes confidently with the powerfully simple Dexcom g7 dexcom.com/juicebox the Dexcom g7 is the CGM that my daughter is wearing. The g7 is a simple CGM system that delivers real time glucose numbers to your smartphone or smart watch. The g7 is made for all types of diabetes, type one and type two, but also people experiencing gestational diabetes. The Dexcom g7 can help you spend more time in range, which is proven to lower a 1c The more time you spend in range, the better and healthier you feel. And with the Dexcom clarity app, you can track your glucose trends, and the app will also provide you with a projected a 1c in as little as two weeks. If you're looking for clarity around your diabetes, you're looking for Dexcom, dexcom.com/juicebox when you use my link, you're supporting the podcast, dexcom.com/juicebox

Allison Smart 16:31
head over there now. So they want to make the most common insulins. And if you look at a pie chart, Glargine is the most common insulin made has about 40% of the market. The next common are aspart and lispro, the short acting insulins. The next one, just as recently as 2022 was dedemere. It had about 8% of the market. And then behind that at that point was traceva. Now traceba, of course, has surpassed that. Glargine is the easiest insulin to make. It's the cheapest. There's a clear path. Dedemere has not been a clear path. The patent was over in 2019 I talked to one insulin manufacturer in India, and he said we were working on bringing a basal of deta mere to the market, but as soon as Novo Nordisk announced they would remove it from the US market, we stopped. They said, it's not work our time or our money to work on this. If you look at the history of insulin, many insulins have been removed from the market and they don't come back. Yeah, and that's a complicated scenario, too. The other thing in the pharmaceutical industry, most big manufacturers are looking for the next blockbuster drug, you know, the next Omnipod, the next billion dollar drug that the talk is not about bringing back a generic to the market. That's just not, it's not what they're focused on. So yes, there are generic manufacturers. One other example, there's a generic manufacturer called civica in Utah, and they're working same thing. They're working on Glargine aspart and lisbro. And I said, Can you add dedemere? And they said only number one, if Novo Nordisk helps us, and number two, we would need an additional $50 million so a lot of these companies, it's very expensive, and they want something clear. And they look at the market and they say, Look, we haven't had enough insulin. There just isn't a real acknowledgement that there are varieties of insulin. So we are heading to a world where, when you say, I use insulin, it is just insulin, because that might be our only variety, but I like to use the example. It's well known that some don't tolerate certain pain relievers, or some don't tolerate certain antibiotics. Your physician doesn't bat an eye when you go and you say, you know, I didn't love that pain reliever, I was nauseated, or I was allergic to that antibiotic, they give you a different one. It's fundamentally about choice. Dedemere and large gene have a different mechanism of action and different qualities. It's not just the duration of action, it's also the manner in which your body uses that insulin. And we need that option. There are some that just don't tolerate there are even some who tolerate large gene for a while and then they don't. I just think we need options. Yeah, make

Scott Benner 19:00
the counter argument to, like, I'm going to try to play devil's advocate for a while. So like, I want to be clear before I start talking, I understand what you're saying. I'm with you. I completely get it. When the argument is, you could use a pump and use Novolog, or Humalog, or my daughter uses a Pedra, or one of those fast acts, and just completely eliminate this basal insulin altogether. And you don't want to, and that's fine, but I don't want to spend $50 million to make levamere, and nobody buys it. What's the argument there? Like, if you were in the room with civica and they're saying, Look, we need help that we can't seem to get from Novo and on top of that, we need $50 million to make it happen. What do you say to them beyond what you've just said to me, you know, like, which is all very touching, and I'm, I'm not heartless to it at all. But like, I'm wondering, like, what's the argument beyond we should have it when their response is going to be, listen, there's traceba, there's basal gar, there's Lant. Like, there's other options for you. You're not going to die from this. So, like, how do. Argue back against that?

Allison Smart 20:02
Oh, I know that's a great question. So couple things. Again, people need backup for pumps, and there are physicians who prefer levimer as a backup because of the shorter action. I have one physician who has a practice of Pediatrics, and he feels like a lot of his teenagers have a lot of adjustment difficulties dealing with type one, and if he helps them have pump breaks, like in the summer and Levi's the one he loves to use. People use long acting when they're first diagnosed. If someone needs an MRI, you need you need backup. So and when people say there are many options, there really aren't. There's really Glargine or traceva. We haven't used NPH in our argument, because that's a intermediate insulin. It's not seen as a realistic alternative, right? And the other thing I need to bring up, it wouldn't be $50 million for every company to do that. That was just for a nonprofit company, if it's for profit, yeah, yeah, this company can do it for 20 million to get it started.

Scott Benner 20:57
And they want to, let me stop you, and they want to, because they're not making anything right now. So even a few percent of the insulin market for them would be a big deal. Is that?

Allison Smart 21:06
Right? Yeah. And here's another thing, the glarging market is going to be very divided. There will be six to 10 producers of Glargine in several years. So you take that 40% of the insulin market, divide it by up to 10 companies. They're looking at 4% of the market. The lever market is a bigger pie. Dedemere. Here's the other reason it would be cost effective. Now I'm going to kind of take a little bit of a tangent. Go ahead, insulin used to be over the counter. It didn't require a prescription at the federal level until 1996 when Humalog came out and then Lantus came out in 2000 dead mayor, 2000 of fine Allison,

Scott Benner 21:43
my friend Mike, used to need a prescription for his syringes, but not for his insulin. Yeah, yeah, yeah.

Allison Smart 21:49
I've talked to people who have had diabetes for 50 years, and they've said one woman in particular, she said I was a struggling college student in the 70s with no job. I could go down to my pharmacy buy my insulin for $2 no prescription. Asked it was behind. You have to ask the had to ask the pharmacist, because it's in the refrigerator. But she said it was easy to get as band aids, yeah. And she said, Now I can't, as these new insulins came on the market, the argument was, these are newer, the newer analog and human insulins require more oversight, so we need a prescription, and the request has to come from the manufacturer. When that happened is when our ins, our market for insulin, when it became really expensive, it was already dominated by these few manufacturers, but it became, we really became at the whim of, you know, PBMs and insurance companies and so here's the argument, regular and NPH insulin have always been over the counter at Walmart, right? So this manufacturer would be interested in having in requesting that this be over the counter. And the argument would be that this isn't a newer insulin anymore. It's been widely available for 20 years. Why can't we get this over the counter? Can you see how much more lucrative It is at this point, even if it's a good price, your market becomes not just former levamire users who most of which have moved on to other methods, but it's a much wider market, and it's part of our argument also we should be able to have easy access to the insulins and even the method of delivery that we want when You You understand that once you have type one diabetes, you have to make changes pretty quickly on your own, and there has been no documented harm from having our and NPH stay over the counter. So that's part of our argument.

Scott Benner 23:34
How much R and mph is still being purchased throughout the country? Do you know

Allison Smart 23:37
I have a pie chart. I can't, I can't remember the exact I mean, it went in that order. It went large. Gene was 40% this is 2022, the next common were aspart and lispro, and then it was levimer, and then it was traceba, and then it is NPH. NPH and R are still important for R is what's used in hospitals, and NPH still has a need to NPH is used often in pregnancy. The pregnancy the pregnancy argument is a big part of what why we're working on this.

Scott Benner 24:04
Also, okay, what is your level of belief that this is going to work out in a in a positive way for your for what you're trying to accomplish? Do you really think this is going you're going to get somewhere and get this accomplished? And if so, what is the path to it?

Allison Smart 24:16
I actually do. I absolutely do because I can't see a future without this. I can't see a future with just Glargine and who knows what happens to traceva. So here's the thing, if Novo Nordisk were to help us in some way, there are several ways they could. They could sign over the right to manufacture. They could involve it. Could help with some sort of contract manufacturing or license it. But you and I realize they may not help, right? Even if they don't help, then we need regulatory help and financial help and and as I am talking to many industry leaders about this, they recognize that this is important, and I think we're going to be able to figure it out, really. I so here's the bottom line. This has been widely available for 20 years. This. Company already knows how to make it. It is off patent. Novo Nordisk has stated they won't assert a patent against it. They won't, they won't litigate. I absolutely believe this is going to get done. We just have to figure out how,

Scott Benner 25:13
when you say they need to sign it over, is that? Is that the thing they're not doing right now, the company you mentioned that is ready to make it, or do they just need no vote to be like, Oh yeah, cool, here it is, and give it to them, and that's not happening. Or what is the sticking point right at this moment

Allison Smart 25:30
so that could happen? But let me make it clear, we're not trying to force them, and I'm not trying to have US government leaders force them. Our advocacy is more how can we get our leaders to help us get this through the regulatory process. Yeah, so Novo Nordisk has

Scott Benner 25:46
Wait. Let me stop you so you don't think that the pathway through this is finding somebody at Novo who just goes, Ah, fine. All right, here you go. That's not what you're shooting

Allison Smart 25:53
for. That's a pathway. But I just want to make it clear that that's not the only pathway, and we're not asking to force them, right?

Scott Benner 25:59
No, I understand. I'm asking, what like, functionally, what did they if that's the pathway that ended up being the way that it worked, what would have to happen like, functionally? What needs to happen on Novo side to make it, make this other company eligible to make the drug?

Allison Smart 26:13
So you can actually sign over the FDA rights to manufacture something. It's actually a piece of paper, and it's more complicated than that. But if they were involved in the process, they could. So there was a here, and I want to make it clear I'm not bad mouthing Novo Nordisk. I understand their business, and I understand it makes perfect sense that if you've got omnipody that are much more lucrative, that you're going to devote more resources there. But if they were to assist us, we could get this done easily. But remember, that's not the only path. If we still get help on the regulatory angle, it shouldn't be this hard to bring something to the market. It's kind of silly that our regulatory process is so time consuming and so expensive to get through.

Scott Benner 26:51
Well, I mean, listen, it occurs to me that you have a small problem and a big problem, and the big problem is not fixable by you may or anything we can do, but the person at Novo who could make that decision? Are they aware of your desire?

Allison Smart 27:03
Yeah, we're talking about it. So when we started this, I emailed the former CEO several times, and either he or his care team did respond to me. So a year ago, September 24 there was a Senate help hearing, and the purpose of that hearing was to talk, they brought in the then CEO of Novo Nordisk and discussed the high price of Omnipod and wegovy and several of us from my organization actually met with Novo Nordisk executives in Washington, DC the day of that hearing, and we had worked for several months. So even though the purpose of that hearing was to talk about the high price of ozempic and wegovy, several of the offices told us, well, your issue is related, and this could be brought up in the hearing, and it was. And we worked with constituents. There's 21 senators on the HELP Committee, and we worked with those Senate offices, and three senators ended up addressing levamire in that help hearing. So I want to fast forward since then, Lars Jorgenson, the then CEO, is not the CEO anymore. There's a new CEO, so I emailed him and asked if we could discuss, you know, some path forward. And we have had a meeting, several of us on both sides, and those talks are still ongoing.

Scott Benner 28:10
I'm looking at something right now, like I'm trying to do my best to figure out how much they're actually making selling levamire. Are these numbers right in 2023 Novo Nordisk reported 3.9 3 billion in sales of levamire.

Allison Smart 28:22
I know that in 2018 it was 1.8 billion. We know that in 2022 it was 640, 9 million. In the US, it's a little hard to get those figures. So your figure

Scott Benner 28:32
of Wait, wait, hold on a second, I'm not sure I'm learning something more here. Oh, this is Danish Crohn's. Yeah, it's different, yeah. So that turns into $571 million US. That sounds like a lot of money, but I think if you look at it this way, it's not in the fourth quarter of 2024, we go V sales more than doubled year to year to 19.8 7 billion Danish Crohn's, which is 2.7 6 billion for that quarter. So I'm pretty sure that if I take 2.7 6 billion for the quarter in 20 24/4 quarter, and I subtract the $571 million that they made the entire year before in 2023 what I would come up with is, it doesn't matter, just let them make the insulin. Isn't that how it feels to you? Right? Yeah, exactly what I feel like I'm hearing here is, is that this thing that they think of is as old and useless and not going to be used anymore, right? They don't want to get I imagine they don't want to give it away, because what if, right there, it's the same reason I can't get my wife to throw out half the stuff in my closet. I imagine is that she keeps thinking like, well, what if we need it one day, and so couldn't they lease it?

Allison Smart 29:42
There's all sorts there. There's not just one path. There are many things that could happen, right for

Scott Benner 29:47
sure? No, yeah, because I'm imagining, like, what they were really concerned that I don't know something crazy was going to happen, like, lease it off to this company for a decade, let them make it for 10

Allison Smart 29:55
years exactly. And that's, that's basically what licensing is, and they could still get a profit. From that.

Scott Benner 30:00
Oh, and you can make money from it, right? Come on. Okay, okay, so what we need is for someone inside a Novo Nordisk to hear this. That would help. That would help, yeah, Allison, I'm gonna take care of that for you right away. Don't worry. Okay, well, consider that part done, and you're making a good argument for them, like so that they can understand the reason I'm going to still tell you I'll play devil's advocate again. Allison, How old's your daughter?

Speaker 1 30:26
She just turned 1717. Years old.

Scott Benner 30:29
Send me with her to play tennis this weekend. Give me any insulin pump you want. I can make her blood sugar good. That argument there, because I'm sure you've bumped into it before is, are you sure you just don't know what you're doing. Explain to people, either you a, because my assumption is a, you just don't want to and it's a choice thing for you. Or B, you know how to do it. And again, you don't want to wear a device, or whatever, which is always fine. Or C, the answer is, you really don't know what to do, and that would be something. So can you be honest enough to tell me, is it? Is it? I don't want to it's a choice thing, or I really don't know how, and I can't figure it out.

Allison Smart 31:07
No, this is a great question, and let me give you a couple examples. So we were at a tournament a month ago, and on the court next to my daughter, while she was playing, there was another teen girl, and her coach was saying, take insulin. Take insulin. He was, he was yelling it. And it was interesting. The next day, we talked to that coach. The tournament was several days. Turns out the coach was her dad. Turns out she was at a level of 550 she uses the Omnipod. Has had type one for several years. This was a well experienced family. And I just, I want to come back to that in a minute. Yeah, there's another girl who we know, who's a friend who was diagnosed a year ago, who's a tennis player. She's not been competing the last few months. She's been using an Omnipod. She's not been competing because they haven't been able to keep her blood glucose in a tight range for play. Now, I understand that you can that some people can get this to work, but I do understand that sometimes there are pump failures and sometimes things happen and people want backup. So it does come down to a choice issue. For me, I'm sure if we tried that and figured it out, we could probably figure it out. I just feel like our method say we use that and it doesn't work and we want to use backup. Barging is just harder for us to handle. And there are some people who there are other things about glarging that make it difficult. For some people, I just, I really, it really comes down to choice. I think we should have the ability to

Scott Benner 32:30
choose. Okay, so I'm going to make a different argument now, okay, and I don't discount yours at all, and I'm on, I'm on the side of your argument. I'm going to say this, my daughter played high competition sports on an Omnipod before the algorithms even and i She played most days at a 90 blood sugar, and she wasn't crazy low afterwards, or couldn't get high. I have never seen a 500 blood sugar in my life. If you're seeing a 500 blood sugar, I believe you're fundamentally misunderstanding how insulin works, whether they have a lot of experience or not, I can tell you that I've had conversations with people who've had diabetes for 20 and 30 years, who have a one CS in the thirteens, and then I explain to them how insulin works, and then their a 1c goes down to six. So sometimes this is really a question of people don't have the right tools, and even if they have the tools, they often don't know the right way to use them, so that's a very common problem, especially with diabetes. That does not in any way negate your argument. I'm trying to tell people who are listening right now, who are probably some of them thinking like, Oh, come on, just get on a pump and figure out what you're doing right like, if that's what somebody's thinking, that's not the argument. I appreciate your choice argument, and I actually think it's a bigger conversation than that. I hear you kind of going over it. You don't dig too deep into it, but what you're saying is, yeah, today, it's levamire, but maybe tomorrow it'll be something else. And what if, 10 years from now, it's this and there's no good replacement now, right? Again, I'll make the opposite argument. I told you about my friend Mike earlier. He was diagnosed when we were kids in the 80s, Mike's gone. Mike's not alive anymore. Somebody put him on regular and mph. And then the world changed, the Lantus and Nova log and Humalog, and he didn't change along with it. And by the time a doctor got a hold of him who understood how things were being done in a modern way, it was already too late for my friend, and his kidneys didn't work. So you can also make the argument that Allison, as much as this is working for you, there may be something over the horizon that's even better. We need to get to it, and we're not going to get to it if we're still making levimir. However, that's not the case. It's not like you're asking us to tie ourselves to a rock and not move forward. You're saying, fine, go do whatever you're going to do with the rest of this stuff. But this is a very small financial outlay for somebody, they can still make a profit off of it. And for the people who want it, here it is, and I'll tell you, if they have the manufacturing space to do that, then why not like, like you said they're going to make I've. 570, $1 million is not a small amount of money, right? But it is. You know, if you're making, what is the number here? 2.7 billion times four a year? What is that? 24689, 10 and a half? Is that 10 and a half billion dollars on we go V in a year? Oh, my God, no way. You can't cut 571, off of that, and just leave these people alone and let them have their insulin. And in your arguments aside whether they're right or wrong. And I'm telling you again, I'm coming out and telling you, Allison, fly me out to where you are. I'll get your kids blood sugar straight for you. And I'm not saying you can't do it. I'm saying I can. But that's not what we're talking about today. And for anybody who thinks that that's the argument to what Allison's saying, I think you're misguided. Your argument should be there's no reason not to do this, and choice is important, and all the other stuff you know. Like, it's nice to say that insulin used to be $2 and it should be that again. It's never going to be like that again, right? Oh, I totally agree, right? Like, that's not how the world works. But you're not here making a Pollyanna argument, which I really appreciate, because I've heard those arguments made before, you know, as an example on behalf of, you know, the cost of insulin, it shouldn't be that much. I shouldn't have to pay for something that keeps me alive. You're all right, like you're I agree with you 1,000,000% but someone's making a lot of money off it. They're not going to stop. They're not going to stand up tomorrow and go, Hey, you know what? I don't need the $10 billion just take it like that's not how this is going to work. And I appreciate that you're not making that argument. And I'm wondering, What can people listening do to help you along the way? Is there something they could be doing to amplify your voice? Yes.

Allison Smart 36:44
And I just want to address one other thing. I am not anti pump, and I totally agree with what you're saying. I think, you know, if you try different things, you can find things that work. Pumps have been fabulous tools for many I am not anti pump. I'm not I just

Scott Benner 36:58
think you don't come off that way? Yeah, I'm making all the arguments in the people's minds that are listening so that I can say at the end, but that doesn't really matter, does it? Right? There's still money to be made on levamere, like, let somebody go make it. And if it's not going to be you, then what are you sitting on it for? Exactly, take a piece of it, give it off to that company. Ask them for a piece. They'll give it to you and let them go make love a mirror for you, and let Allison's daughter live her life, and everybody else who uses it and take out, take a little bit of money and be done with it. Like, why do you have a 55 year old typewriter in the top of your closet you're never going to pull down again? Because that's what this is

Allison Smart 37:35
to them. So the other thing we don't even need pens. We just want the liquid, just little vials would be because that was an argument. First, you know, they needed, I mean, the pens were needed for ozempic and wegovy. I just it's so much bigger the more I've gotten into this worldwide development of insulin. It's just such a shame that it's been so consolidated. And the other thing with pumps, I know I'm a little bit all over the place. You're not. I think I would want to try some, but I just want good backup insulin. So I totally agree. And then what another thing you said? What can listeners do? Yeah, so I do want to address this one. So we talk to legislators often. They know this issue. I wish they would hear it more. They'll say they'll hear us. And then they'll go, Huh, this is a problem. So they'll talk to, you know, big advocacy organizations or others, and the message comes back, oh, this isn't that big of a deal. If more people would speak up about it, even people who aren't levamire users, if people would, you know, send a message to your legislators, because really, we need attention from the FDA. So the FDA has viewed insulins as basically interchangeable, which has been a real problem. Some Senate offices reached out to the FDA last year when we came with a lot of physicians who specialize in diabetes and pregnancy, who said, this is really important for pregnancy. So they went to Novo Nordisk and they said, how can you discontinue this one if we have physicians saying this is important for pregnancy? But since then, so we filed a citizen petition with the FDA, with with physicians and some small organizations in April, and then the FDA said, Okay, well now we have 180 days to respond, so they they won't communicate with us. So we need help with the FDA, and that needs to come from legislators. So everyone in the US has two senators and a congressional representative, so it would really help if you reach out to them, reach out to our organization. There's a way on the website, you can leave your your email that would really help us. We do not have we haven't focused on the funding side, and we need to focus on that more. So back to your question of, how can people help if they can reach out to the legislators and communicate with us and say, How can we help? Because it's changed over the last year and a half. The messaging has changed. And it's nice if people are interested in this, if they reach

Scott Benner 39:50
out, yeah. But in the end, what we really need is for Dow star to just do this right like it needs to get to the CEO. And I'm going to tell you right now that if the CEO of node. Ovo sits up tomorrow and says to somebody, Hey, let's make it so that, what was the name of that company that wants to make the levamire our bio? Oh, yeah, let's, let's work it out so our bio can make love America. It'll get done tomorrow, exactly, right? Like you just got to say it out loud, and then it's gonna happen. And then $571 million comes off the sheet. Okay, I'm you get a piece of it back, and you'll get a piece of it back for longer, because you're going to stop making it anyway. So you can lose 571 a year for the next 10 years, or take 10% of 571 for the next 10 years. That's just money coming in that you don't have to do anything for. But my other thing to say here, like, if he was listening to me right now, I would say this, I'd be like, Mike, listen goodwill. Man. Like way to buy goodwill in the diabetes community, and don't discount that at all. In a world where people already think you're overcharging them for the thing that's keeping them alive. And they're right in a world where they think that the only reason that insulin is getting cheaper is because somebody's making you make it cheaper. And they're right in a world where they think you're more worried about we go V and and, you know, ozempic, and the fact that Manjaro seems to work differently and your stock price fell like where they think that's what you're worried about, and they're right. Why don't you do something nice for them? Exactly, yeah. Why don't you just say something out loud in the middle of your office and make it happen, wave your magic wand, make it happen, and then go out in the world and tell them about it. Let me be cynical for a second. I'd run a marketing campaign behind it. If I was you, I'd be like, listen, huge. Here's what we did for you my gut. Like, how do you not see that from a marketing perspective? Reach out to the diabetes community and go, Look, this was coming off the books, and most people don't use it. But here's Allison and her daughter and the other people who use levemere Still, and even though it was not financially a good idea for us, we made sure that this still existed. For you, you don't see what like the bright sunshine that would put on Novo in the diabetes community, by the way, the diabetes community that one day you're hoping is all going to use a GLP medication you don't want them to like, think Novo Nordisk did something good for us. So there's me being cynical and still trying to figure out a way to make this work for you, unless I don't understand the downside of them signing off and letting this happen. Maybe he could cop on here and tell me something. I go, Oh, Allison, you're screwed. They can't do that. Like maybe I don't know their side of something, and I completely am willing to believe that I don't really know a lot about anything. But from my perspective, from your story from understanding the bigger world, I just don't get why they couldn't just do this. Just be cool, man. Like, how hard is it to just do a good thing once in a while?

Allison Smart 42:28
Right? Oh, I totally agree. We would praise them to this guy. I would love, I would love them to, of course, fix this.

Scott Benner 42:35
Yeah, of course. I don't mean to say 570, $1 million isn't a lot of money, but in in this grand scheme of things, it's not and especially if they're not going to make it anymore, right? Like, oh gosh, this must be incredibly frustrating for you. Allison, what happened? Like, what moment did you have, a slowly eye turn, where you decided to get this far into this? Like, how did you not just let this go and decide, like, I guess it's not going to exist anymore.

Allison Smart 42:59
Honestly, it's about choice. This is a tough diagnosis, and when someone finds a method that works, look, I think if Omnipod went away, or one of these companies went away, there would be a lot of people doing I think what I'm doing, yeah, it's so important. And I as I delved into, you know, the long action time of traceiva and and some of the other things about Glargine. Glargine hurts like it has an acidic pH of four. And that might seem like a small thing for people, but for others, it hurts. Detamir and deglodex don't have that, so levamire and traceva

Scott Benner 43:31
Allison. That's why Arden stopped using Lantus. It burned, right? Yeah, I couldn't remember why it burned. So we moved to levimere.

Allison Smart 43:39
Glargine has to crystallize subcutaneously and then produce this slow that's how it gets the slow mechanism of action. It has to be acidic. To do that has to be in an acidic solution, and it's also less predictable. If you inject Lantis accidentally into the bloodstream, it's rare, but you can have an unpredictable hypoglycemic event. Dedemer and degli deck don't act that same way. They bind with the albumin. So there's just, there's so many reasons that I feel more comfortable with my daughter. And again, she's going to use pumps, I'm sure, in her life, but I want her to be able to fall back on levamire. And is this is worth the fight?

Scott Benner 44:16
Okay? Well, that's awesome. That's a great reason. Yeah, I can't believe you just reminded me of that. That was a long time ago. Yeah, yeah, because she was so little, we didn't realize right away. Then she could articulate it, and we were like, Oh, I think this is this hurts her when she's using it. And someone said, Oh, go. Then try 11 mirror.

Allison Smart 44:30
Yeah, people, it's pretty common. Like, kids don't mind their meal, insulin shot, but when it's time for their, you know, their basal, it hurts. And that's that's because it's clergy,

Scott Benner 44:41
yeah, my daughter can't use. What are the two faster acting ones? I can't think of the names anymore. All that money you guys spent on that race car, and I can't even think of the name that must piss somebody off. Oh, what was it called? The faster acting maybe loom JEV or loom JEV, she can't use, but the Nova one too, the fee. ASP. She can't use that either. Oh, that's so crazy. I've seen a, I've seen an f1 car with fiasp written on it. I can't imagine what that cost, and I couldn't think of the word Fiat just now it burns. She just can't use it. So, you know, it's, it's tough for somebody, and if you have the power to make it easier for somebody, and it's really, literally not going to cost you anything, actually, it'll make you money. Then, I mean, I just don't get it. Like, I'm not calling the guy out directly. He probably doesn't even know about this, but I hope he hears it, or somebody who works for him hears it, and I can almost guarantee that somebody that works with him is going to hear it. So like, Guys, what are you doing? Just sign the paper, give it off to whatever the hell that company is, and let them make the thing. And what do you care? Right? That's my message.

Allison Smart 45:38
I totally agree. And then just one last thing, so levamire can be diluted. You can't dilute Glargine and degli deck. It's not commonly done, but it is done like I again, another Senate office visit. I had the aides. Sometimes the aides are fellows, and they're physicians, and one of them was actually a child psychiatrist, and she said, I've personally diluted levamire for children in an inpatient psychiatric unit. And I've had others who have said that. And so there's just some lesser known, honestly, bottom line, the insulins are different. We shouldn't be left with just glory gene. Let's just figure this

Scott Benner 46:13
out. Yeah, no, I get it. I wonder too, how many users that 570, $1 million represents, because we're hearing your story, and you know you're, you're doing a good job on your website, by the way, of bringing other people's like, you know, faces out, etc, but like, you don't know, how many, like, how many people does that really mean, right? Like, like, how many people have a story something like yours?

Allison Smart 46:36
So, and I'll tell you, I do have some numbers I would imagine. Well, 2021 there were over a million users of levamire. 2022 there were just under a million. And of course, it's decreased since then. It's been harder to get the figures since then, because so there, I've called around. There's actually some levamire Still in some pharmacies right now. You couldn't, you couldn't order it beginning earlier in this year, in the US, it's still available in every other industrialized country, but it will leave the worldwide market. But you can't like like if you want to get it. It's not covered under most insurance plans, and the coupons don't work anymore. So it's it's back to being very expensive, if there's any left. But as back to your question, as far as numbers, certainly, most people have moved on to another method. But there just is a big core group of us who are just, I mean, I have one woman who I talked to recently who's got, still a pretty good supply, and she just said, Allison, God help us. You know, she can't tolerate for her, it was more complicated of why a pump is difficult. Pumps are expensive too. Not everyone can afford them. But again, even if even even pump users need good backup. And if someone doesn't tolerate Glargine, and you need a pump break, I have one woman who talks to me who she needs frequent MRIs for a condition, and she says, Levi's perfect, because you can see it ramp up, and you can see it drop off in that short period of time she can't tolerate Glargine. And she says, you know, traceva has just got this super long tail. So if I'm using it for a pump break, it's really difficult.

Scott Benner 48:04
Isn't Novo making live and mirror overseas? Yeah, we haven't

Allison Smart 48:07
been able to find exactly where it's manufactured. That's pretty tricky. But they do have manufacturing facilities in they have a lot right in Copenhagen, but there's also some in North Carolina. There's some in other

Scott Benner 48:18
countries, I would imagine they're probably trying to move people to tracebo, right?

Allison Smart 48:22
Well, see, that's the thing, and traceva is still patent protected, so it is more lucrative than levamira.

Scott Benner 48:28
Yeah, no. I mean, I understand all the so there's the other reason, like, if you stop making levamere, let's say it's 300,000 people who are still using the US just make a number, right? If that made up number is accurate, those 300,000 people are going to get off love a mirror and go to traceba and then, so they're not really losing the money. They're gaining more money. So that's their argument. Their argument is, is, if I give it away, then you're going to steal those customers from me, who I was going to get a different way. Ah, there we go. That's the argument for their side, right? Yeah, yeah. I got, I couldn't find I was trying to figure out, like, why would you not just do this thing, and that's why, because they'll lose those

Allison Smart 49:03
people. So I do want to just, I think, I think I need to bring history into this, please. Animal insulins. There used to be different varieties, different concentrations. There was beef, there was pork, there was, you know, different concentrations. They were removed from the market. Then there was, there was the ultra lenti, lenti, semi lenti that was removed from the market. We've really it's, it's a problem that we don't live in a world where we could still get some of those, you know, for the people who can't afford a pump, or who go on vacation and, you know, something happens to your insulin. And I just not good things have happened to the diabetes community, and this is time we need to turn this back just a little bit. Let's let us have continued access to this one.

Scott Benner 49:46
Well, I wish you a ton of luck. I have to tell you that as I try to put myself in everybody's shoes in this conversation, and I have obviously limited knowledge of everybody's motivators, but I think that's the least of your arguments. I think that's the. One that's going to get the least movement. I really do. I think you have to find a way where there's something that good that comes out of it for them. Like, you know, yes, they're going to still make a piece of it if they lease it off, or whatever they call it. You know, that's not going to be as much as if you transfer those hundreds of 1000s of people over to traceba users. But the truth is, is you're probably more going to transfer those people off to being pump users. And then, I mean, they're not going to use that, that basal insulin anyway. They'll, they'll use more Nova log, Humalog. Maybe it just feels like there's not enough in here to overwhelm the goodwill that you would get out of this. And I do think there'd be a lot of goodwill out of this. I think this is a thing you'd hang your hat on for a decade afterwards, you know, and maybe it would be a little, would even feel a little hollow, but to most people, it wouldn't like, you know, like you did a thing for somebody when they were struggling, and it cost you a little bit of money, but you thought the people and their happiness were worth it. Like, these marketing things right themselves, like, why don't you try looking at a different perspective from how this can be valuable for you as a company. And listen, by the way, no joke, I don't know a ton about business, but the CEO that just left is at large, Jorgensen, right? He didn't just like decide to leave, like the stock price dropped, and they, they told him, time to go now. Then they bring in this next person. He's not looking for the stock price to drop, because he'll be told Time to go now too. I just don't know if this is a thing that touches that price. I don't know if this is part of that argument or not. And I don't know money like that. I'm probably the wrong person to ask, but I'm asking for the people who do understand it to look for a way to make this into a good thing that you're doing. And you know, that's it. That's my thought there. Yeah, good luck to you. Geez, Allison. I How much of your time do you spend on this? A lot,

Allison Smart 51:48
a lot. It just, it matters. It's worth it. Yeah?

Scott Benner 51:51
All right, listen, do it just to give Allison a break, yeah, she got stuff she wants. That's right, exactly like to paint the living room. You know what I mean? Like it. Tell people to this is not your idea of fun, right? Right? Yeah, like, you're not looking to have these conversations, right? Right? Yeah, you just would like it to be over. Well, I hope this helps. I hope this conversation gets to the right people, and that they have a change of heart, and they do, they do something that, you know, maybe they don't have a financial reason to do, but just be a nice thing to do. So hopefully that'll happen.

Allison Smart 52:21
I sure hope so, and I appreciate this. Glad to thanks for letting me come.

Scott Benner 52:24
No, it's my pleasure. Thank you again. Hold on one second for me. Okay, okay.

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