#1243 DIY Insulin Algorithm - iAPS

Episode 1243: Advanced Diabetes Management Techniques with Deniz

In this episode, Deniz discusses the benefits of advanced diabetes management techniques, including the use of algorithms and loop systems. Discover how technology can help you manage insulin doses more effectively and simplify your diabetes care. Deniz also touches on the psychological aspects of diabetes management and the importance of having a supportive community. Listen to learn more about these cutting-edge strategies and their real-world applications.

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.

+ Click for EPISODE TRANSCRIPT

---

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

Scott Benner 0:00
Hello friends welcome to episode 1243 of the Juicebox Podcast

today I'll be speaking with Dan he is 31 years old from Germany he's had type one diabetes for 27 years, did a lot of MDI actually for 25 years but he's recently got a pump and become very active in the do it yourself community. We're gonna get to know Dan and then the second half of the episode is pretty specifically about Iaps which is a do it yourself algorithm. 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. Hey, everyone, I need you t one D exchange.org/juicebox. Head over join the registry complete the survey should take you about 10 minutes. They're looking for type ones, and caregivers of type ones who are US residents to complete this survey. When you complete the survey, it helps type one diabetes research significantly. I can't stress enough that your time will be well spent at T one D exchange.org/juicebox. completing that survey simple survey you'll know the answers no stress. If you have a chance to check out the private Facebook group Juicebox Podcast type one diabetes on Facebook today's episode of The Juicebox Podcast is sponsored by touched by type one touched by type one.org. Check them out on Facebook, Instagram, and go to touch by type one.org to learn everything about what they're doing, including their big event coming up. This September in Orlando absolutely free to attend. I'll be there Jenny will be there go get your tickets now touched by type one.org. This episode of The Juicebox Podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour next one.com/juicebox. Did you know if just one person in your family has type one diabetes, you're up to 15 times more likely to get it too. So screen it like you mean it. One blood test can spot type one diabetes early tap now talk to a doctor or visit screened for type one.com. For more info. This episode of The Juicebox Podcast is sponsored by screen for type one.com. Guys, I'm going to read you something. At the time of this recording. Dennis was working on Iaps. But shortly after he moved his focus to trio, which is a new version of the Iaps app that's been started by a number of former Iaps contributors. TRiO is currently in an open beta. But keep your ears peeled for a future episode about trio once the app is officially released.

Deniz 2:58
Hi, my name is Dennis. I usually go by then I'm 31 years old. I'm from Germany. I've been diagnosed with diabetes type one in 1987 which should make it 27 years of type one I think now for the better part of my life. I've been on MDI, actually 25 years. I've gotten like very, very lately into like tech and you know, the whole CGM pumping, you know, IID EPs and stuff. So, yeah,

Scott Benner 3:27
wow, you got diagnosed when you were how old? Like, four,

Deniz 3:32
I was of five by five close to turning six a year after

Scott Benner 3:36
I got married, which just made me feel very old. How long have I been married? I've been married 27 years. Yeah,

Deniz 3:43
more than more than like, a quarter of a century. Man. That's a

Scott Benner 3:47
long time. Okay. Okay, so you're diagnosed at five? You're 31. Now you did MDI for the first 25 years?

Deniz 3:54
Yes, I've just gotten a pump. Last year. Actually. I've got my first CGM in 2019. Okay, which is quite funny. Because I'm actually super into tech, I was always into computers and gaming and stuff. I'm, I'm a, I'm a software developer by a career choice. And I actually got a degree in computer science and a postcard in computer science. So it's, it's kind of weird that I've not stepped into the old tech stuff around diabetes earlier. But for some reason, I was just, it was working. And my endo was is like, who's also type one, by the way, it was just like, you know, what, why do I change the car? When is it running perfectly fine, you know, just like, Dr. And so I've been on it for a long

Scott Benner 4:33
time. I'm always interested when people say things like, it's going great. Or it was working or I love my doctor, what what does that was working mean? What were your outcomes? Like?

Deniz 4:41
Not gonna lie when I was a teenager, you know, I had the whole rebellious phase. So they were like, some really, one high a one season there, and, like, just above 10 1011, right. But I had a very, very bad decay when I was I think 19 Or yeah, I think 19 And that basically really You know, make me get my together. Yeah. And so after that I've been in like the low 60s on MDI. Even with just fingerprints actually, I started to work out a lot. I started, you know, watching what I eat and watching my diet, basically. And then I got a CGM in 2019, which was pretty late. And while on that CGM, it was even below sixes. Like it was just between like 5864. Right? It was like ranging in between that on MDI and just just the CGM. So I switched to basically a pump because of something we're probably going to get into later. But yeah, let's let's concentrate on them. Yeah, but

Scott Benner 5:38
so like those first 14 years. So up until the dka, basically, you were, what were you always bolusing kind of bolusing sometimes Bolus, like how to like what did that look like, like skipping meals once in a while always taking your basil but not covering foods, that kind of stuff.

Deniz 5:57
So basically, I was I was diagnosed when I was five years old. And back then they used to do things in Germany very, very conservatively. Right. So you basically, you got your long acting in the morning and at night. And I had basically like set times and set carb amounts to eat and set bonuses to go with that, because they weren't really doing the whole, you know, check your sugar. And depending on what it is, you need to you know, correct your blood glucose, and then your goals for the meal. So I was basically finger printing in the morning 730 before school, and then I was like fingerprinting lunch, and there was maybe finger printing in the afternoon and before dinner, and I was just like eating at like set times and giving set bonuses. And I was giving like my set long acting insulin, which I think was lentes at the time. You know, as time moved on, I wanted to get more independent. And then they kind of put me on like a new thing, which they called the intensive therapy plan, which was basically how you would do MDI in like a modern way, right? It's just like, check your blood glucose, whatever it is, here's the ICR his eyes F right. And then you just like, correct, and you go, like, go with the flow, but you still just use pen injections. So being like a teenager and stupid and not really understanding what you know, long term complications mean, you know, you just sometimes you you stop fingerprinting, and you just go, oh, oh, well, that's two cheeseburgers, I'm gonna do like five minutes. And then maybe your sugar was like 220, or like 180. Or you shouldn't really have done just like five units, right? went along like that throughout, like, through my teenage years, my parents, they got divorced, when I was really little, even before my diagnosis, actually, my mom was like, having super big mental problems and like, personal problems, and she wasn't really like, on top of my diabetes, while I was being like, I was a child and a teenager. So I was kind of on my way, like, by myself, in that regard, like, you know, she, she took me to the regular into appointments, stuff, it's not like she was she was like, sleeping Willow bridge or whatever. She like, she wasn't really like, like you are if Arden, for example, right? She wasn't like on top of my diabetes, and like, you know, slowly educating me to like, take care of myself. And you're like, letting me off the reins, so to speak, but still pretty much on top of it because it was a teenager, right? And so it just, it just kind of went that way for a couple of years. Right? You

Scott Benner 8:01
don't recognize it's a long, long process to understand a big idea. And it's not like sitting down and talking about it for two hours. It's five seconds here and five minutes there and saying something on the first of the month and remembering to say it again, three weeks later and biting your right through your lip. If they do something that you're like, Oh, not that, but you don't want to call it it's like a pressure point. So you just cruise through it, ya know, it's okay. Don't worry about it. But then you have to make a mental note then as a parent later to come in and clean it up later. It's a lot of work. I understand why it doesn't happen. And if your mom was having other trouble on top of that, then I mean, it makes sense.

Deniz 8:41
Yeah, yeah. And so like, in retrospect, I can, I can understand what happened when I was a child. And when I was when I was a teenager. Frankly, it's still between us. And we're like various estranged with me being an adult and her, you know, not being retired. That kind of really still stands between us. Yeah. Right. Other things as well. But that's also like a huge portion of what kind of stands between us. Yeah, it's like, yeah,

Scott Benner 9:07
but then sure, I mean, that that listen, I'm standing in the middle looking at both sides, I see what could have happen to your mom. That doesn't mean that she didn't still need to do it. You don't even like it's hard, but you still have to go do it. And I just think that a lot of times people think that making a baby is like buying a house plant. You know what I mean? Like, Oh, I love the way this looks I'll put it in the corner and every once in a while dumped some water and it'll probably be okay. Very much not like that very much you making children is not for the faint of heart. And if you think it's easy, you're probably doing it wrong. So you know, they mean Yeah. So you and your mom to this day, not not a great relationship and you think it's mainly because of your diabetes,

Deniz 9:49
not because of the diabetes but basically because of like how she reacted to diabetes and but it's not about like, the main thing, right? Like my, my mom has personal problems and she still has them To this day, like, right, I'm I think she's borderline narcissistic. Right? And it just, it just builds issues. Like first of all relationships, not trying to like tell my mom, for God's sake. Right. But it's like, it's it's just a very difficult relationship with her. Right? We talk from Time and again, right, but But honestly, she lives like 10 minutes from the place I work at, right? And I don't really think I have seen her in like the past six months. And it would just basically be like, you know, guys, hey, I'm going for lunch break, and I could just like walk over and have coffee with her basically. Yeah, right. And we don't we don't do that kind of thing.

Scott Benner 10:32
Does that bother? I noticed that's not why you're on. But does that bother you? Do you think about it? To an

Deniz 10:37
extent because because I also don't really have a relationship with a father. Right? Because, you know, they they split and he went back, like he's from Turkey. Right? So I'm half German, half Turkish. And he went back to Turkey. And I normally I don't even know if he's still alive. So you know, there's the father figure gone. And then there is also the heart relationship of the mother. Right? So it's not I'm an orphan, right? She's still there. And I had a really, really, really important relationship with my grandma. So my mother's mom, but yes, sure. It bothers me, right? Because, for example, I see how extremely close my girlfriend of nine years is with her family and her mom, especially right and also a father. So yeah, sure, sure that bothers you, right? Because you kind of want to like rely on family. But I got a tattoo on my right arm, which says true friends of family. I got that long story. But I got that when another friend of mine was going through a really hard time, and we were all drunk. And then we all like made that vow to get the tattoo. And so there's like four people running around with a tattoo now, which says true friends of family. And I really mean that though, right? It's it's like a funny story when we're like, young and stupid and drunk, right. But it's like, we didn't get into to have a drink, by the way. So you know, don't drink and drive and don't drink and get tattooed. We got it after the fact. And I still kind of live by that. Right? I kind of really consider a group of really close friends, I have my family. And I have done that for probably the past 10 1215 years, I guess. It makes solid sense to me. Right? And so it's, I've kind of, you know, chosen the family I want to have, as many people do. And the family you can't really choose, which is usually your parents or siblings and I don't have siblings. I'm an only child, you know, they're there. And there's past that happens, you know, this history? Yeah. And I kind of just, you know, have to live with it. As I said before, right, I understand what happened and they kind of understand where she is now. being where I am in my life, you know, coming from like a working class family, having myself worked up to like a post grad degree working as a software engineer, right. It's life is hard, right? Life Life isn't always, you know, a pony farm. But still, it's you know, it's

Scott Benner 12:35
I've never heard life's not a pony farm before. So you're very close to calling your episode pony farm, but go ahead.

Deniz 12:44
It's like it's like a German idiom that I just kind of translated. Because like in Germany would say the Siemens company. So

Scott Benner 12:51
Well, I definitely can't make that the title. Yeah. If you send it out to me, phonetically, I can make it the title. It's, I would, yeah, I think anyone would download it. If it was the title was like,

Deniz 13:01
Oh, we can totally try that and see how your dollar numbers are? Oh, I see

Scott Benner 13:05
you. You don't care about my downloads? You're like, Yeah, I'll just let the whole thing collapse. Scott will try it. That's hilarious. I actually, I'm gonna get you to send it to me. So okay. I think I'm just gonna kind of fast forward up to last year, because trip, I think it's fascinating to just do MDI for 25 years, being a software developer. And then one day go, hey, you know, what? Why don't I try this other thing? So my first question is, were you not exposed to it? Like, did you not know it existed? Are we just happy with how things are going? From the very beginning, your kids mean everything to you, that means you do anything for them, especially if they're at risk. So when it comes to type one diabetes, screen it like you mean it, because even if just one person in the family has it, your child has up to 15 times more likely to get it to screen it like you mean it. Because type one diabetes can develop at any age. And once you get results, you can get prepared for your child's future. So screen it like you mean it type one starts long before there are symptoms, but one blood test could help you to spot it early, before they need insulin, and could lower the risk of serious complications like diabetic ketoacidosis or DKA. Talk to your doctor about how to screen for type one diabetes, because the more you know, the more you can do. So don't wait. Tap now or visit screen for type one.com To learn more, again, that screen for type one.com screen it like you mean it

Deniz 14:37
well, so Okay, so I knew it existed but honestly, I didn't really like look into it that much. Because I was always kind of happy with what I had. And so I kind of started looking into like more tech stuff before I went to like a semester to study abroad like a semester abroad to study in Canada. I studied one semester in Vancouver. And I was like, no, no I kind of want to have like my hands more like my hands free to do stuff abroad and then so that's when I got the CGM, basically, because my Endo, he was like, Oh, now you want to CGM. Really? Yeah, sure. Let's go for it. So we did that. I'm in Germany. You know, we have like the whole universal health care thing. You know, it's easy for me to get a CGM. So I got a CGM after like some paperwork. Honestly, what made me go from MDI, after so long to pump therapy was basically suddenly out of nowhere having a macular edema in my eye, right. So I went to into the, like, the regular checkup with my, of the eye doctor guy. And they, you know, they do the whole thing where you like, drip dripping in the eye, and the whole thing gets bigger. And then they look into like the retina. And I don't really I don't have retinopathy, and I don't have anything else in the eye, basically. But suddenly there was this macular edema. And so the guy goes, Yeah, how's your diabetes? And I go, like, yeah, my agency is like, five, nine, and the one before was like, six. Oh, and the one before like, was also an A goes like, Oh, you got to be kidding me. And I'm like, No, seriously, like, the past eight to 10 years. I've been in like the low 60s. And you know, I got my act together. And so it was like, Okay, this is this is super, super bad. And we need to fix this. And so they started me on like, like, I injections for eight months. I think it's gone now. Right? So spoiler alert, it's gonna, everything's fine. But when I went back to my Endo, and was like, okay, so I got an issue. I have something in my eye. What do we do now? Yeah. So he was basically like, Okay, your diabetes is basically so like, fine tuned, we kind of need to find out, like, what the issue here is, it was like, you know, this, this could be long term complications from basically having somewhere between like, you know, eight to 10 years of both during your childhood and my teenage years, but it was like, still, it is really early to have that kind of complication. And at the time, I was 30. No, actually, I just had turned 31 to have that at 31. With like, the sugars you've been having for the past 10 years. Yeah, he called it metabolism fluctuations. So, you know, talking to you, it's basically the whole postprandial spike. So going higher, going high after a meal or going high at like a random point in the day, and then coming back down, being in range, but just the whole, you go up, you go down, you go up, you go down. And he was like, yeah, maybe that is, like some issue because they can also, you know, change things in your eyes, if you have a lot of that basically. And say was like, you know, your agency is really low, and really well tuned. And the only thing that I personally can think of is basically, let's put you on a pump. And let's try to basically replicate the human body functionality, as closely as variability with the spike. Exactly, yeah. Because if you if you're on 10 injections, if you're especially if you're along like like long lasting insulin and shortlisting like reppin, insulin, it's always you, you do the injection, and it's always a push, and the push of insulin and the push, and then it levels out. And then you know, it's it becomes effective, right? And then you have, but you always have this like certain peak. And as you know, if you're on a pump, you only use rapid acting or ultra conducting insulin, you don't really have like those high peaks, right? And he was basically trying to get the insulin dosage in my bloodstream as you know, as evenly as possible and also get blood sugar as evenly as possible, right? Yeah,

Scott Benner 18:16
I think back I just had an experience where I was talking with somebody the other day about some of the things that they learned on the podcast to the Pro Tip series. And it took me back to managing Arden like that, before you know Arden's using Iaps. Now she used loop before that she's used Omnipod, five, like, we've used a lot of different algorithms. And before that, an algorithm wasn't a thing when Arden was eight years old. You don't I mean, like, so it was just me like looking and thinking, like, we have to match the effort here, right, like blood sugar is making an effort to drive up. I need to be making an effort to push back but not too hard. And you know, once you have a CGM, it's really when it opened up for me right art and puts a CGM on you can see it in real time. And you're like, oh, I need to add, I don't know, the way I thought of I was like, I need to add resistance here. You know, and not insulin resistance, but resistance with insulin, like blood sugar is trying to go up. I'll put some resistance here. So it can't go up. I'll take the resistance away. So it doesn't create a low later, you know, if she tries to get low, we're going to add some resistance with carbs, but not enough to push her back up again. And now I look back in hindsight, and I go, Oh, I was an algorithm. That's, that's what I was doing. I was I was just about to say any of the algorithm and it was exhausting. I don't want you to be like, no one should be confused. I was exhausted and dying, I think, yeah, totally. And up in the middle of the night and etc. But Arden's a one C's were in the high fives, and mid to high fives, and she was growing up and didn't have any trouble with their diabetes and I kept thinking, I mean, hopefully something will come along, right you don't I mean, like and then all of a sudden one day like there it was. So Having that experience of living like that, having figured it out on my own, finding out a way to apply it, and then seeing a machine come in and go, Oh, I could do that for you. And then having watched them now improve over time. I keep thinking like, wow, this is insane. Like maybe, like fingers crossed, like maybe Arden doesn't go into an eye doctor ever and hear Hey, what's that in your eye? You know what I mean? Cuz that's really the one that's what I'm doing it for. Right? Like you're you're doing it for short term happiness and health and long term happiness and health. The whole thing is happiness and health. Honestly, I'm glad that they were able to fix it for you. How many injections did you get before it was clear?

Deniz 20:36
I got I think eight injections. So yeah, January to August every four weeks.

Scott Benner 20:41
They say it doesn't hurt. Is that true?

Deniz 20:43
It really doesn't hurt. But the funny thing is all

Scott Benner 20:48
right. Like when they're coming at you with it? Well,

Deniz 20:50
so Okay, so typically, they they put like this thing in your eye, which basically like prise open your eyelids, and you're like told to Okay, and now look at like a certain direction. I think for me, it was like, like, lower lower right corner, basically. So you were just like looking down. And then they do the injection like all the way up there. Right? The eye is numbed a bit, right? That would like a numbing drop trippy thing in there. They sanitize the shot AI as well. Like, like, did they put all this stuff on your face. And you're like not like, you're basically saying that like this, you're like not supposed to touch your head at all, like grief, or move or whatever. And then they do the injection and you don't feel it, you don't see the needle. The only thing that I felt was basically it's a bit like, as if someone like just like, precious, like, put some pressure on you. Like, if I don't tell you I'm touching your face. And then suddenly a finger touches your face, like very rarely. But it felt like that's the feeling in your eye. Like you feel like a little pressure thing. And then what you see is basically it's a bit like as if suddenly before your eyes, there's like there's like fluid or like a fog, okay, for like a minute because that's like basically when he pushes in the injection solution, right? And it kind of it kind of mixes in there on top and does whatever. But now you don't you don't really feel it magical funding your studies saying it doesn't hurt. So he does the injection I think was a third of the fourth one. And then he does an injection. And I feel like him pulling away after the injection. And he goes, Oh, and I'm like, Doc, what is Oh, like, please don't just Oh, me. And he goes like, yeah, so I think a little blood vessel just burst. That's totally fine. That's, that's all right. Nothing's gonna happen to you. And I'm like, What do you mean blood vessel verse? Yeah, there's just like, some minor bleeding, don't worry about it. And then, you know, they they took like, they took like, some tissues and put it away and then took like, some more sanitizing lotion on it right to like, stop the bleeding and stuff. And then they were like, okay, you'll be on your way Your eye might be adjusted a little bit read just a little bit read, don't don't worry about it in like a week or so it's gonna be like it's gone. Okay. And so I was like, Okay, fine. And so they basically put a bandaid on your eye after that. And you're supposed to leave it on for like six to eight hours. And so I had this bandaid on my eye. And then in the evening, because the appointment was like 10am or something. So in the evening, I took, I think the band aid off tomorrow, and they're looking like I'm in the bathroom. I took the benefit of my and I look into the mirror, and I kid you not I looked like like T one. Like, what's the terminal name? T 1000. Like my like, like my I was completely red, like completely. There was no, no white left him I was completely red. And so I'm like, what the actual F is happening here. And so it was it was like eight or nine, eight and 9pm at that time. So the the the clinic was closed. And next morning I called them and I'm like, Yeah, so the dude said there was a little blood vessel that burst and I thought like, you know, have like a weightlifter who has like a little blood vessel in the eye, right? And you just see like this little red thing in their eyes. And they're like, Yeah, you know, what, if it's really that bad, just come in tomorrow. And so I go in and I'm standing there in like the welcome area, and people are going by me and they're looking at me like I'm a zombie. Right? Because like the whole I was like, yeah, so anyways, he was like, he looked at it the next day, and he was like, Yeah, you know, it does look bad now but it'll be gone in like a week. And so I ended up looking like at five weeks. Five we'd like it. Yeah, because he was so that was like so much blown.

Scott Benner 24:05
And could you see that time? Yeah,

Deniz 24:08
no issues we've seen like little but it was just like,

Scott Benner 24:12
wasn't like a horror movie. Everything wasn't read or tainted or

Deniz 24:15
No, no, no, luckily not. Yeah. And so it took like five weeks and it went from like laundrette to like basically brown to like lightly yellow. While it was like basically decomposing the blood in the eye or whatever.

Scott Benner 24:29
Blood took you a month to explain to the entire neighborhood I don't have some weird i COVID or anything like yeah, please don't. Yeah,

Deniz 24:37
it was kind of bad because you know, at work like my close team, like the four or five guys at work, they kind of know something like everyone like everyone who asks, I'm going to tell them about Vedic right and my close team. They know it. They know the pumps from beeping and CGM from beeping right? Yeah. But if you just like suddenly walk into work with like an eye that looks like that everyone's going like stay away. Stay away. And so, once like so let me let me see if I can, once I can show me a picture, I'm gonna show you picture once like how do I,

Scott Benner 25:08
the contour next gen blood glucose meter is sponsoring this episode of The Juicebox Podcast. And it's entirely possible that it is less expensive in cash than you're paying right now for your meter through your insurance company. That's right. If you go to my link contour next one.com/juice box, you're gonna find links to Walmart, Amazon, Walgreens, CVS, Rite Aid, Kroger, and Meijer. You could be paying more right now through your insurance for your test strips and meter than you would pay through my link for the contour next gen and Contour. Next One test strips in cash. What am I saying? My link may be cheaper out of your pocket than you're paying right now, even with your insurance. And I don't know what meter you have right now. I can't say that. But what I can say for sure is that the contour next gen meter is accurate. It is reliable. And it is the meter that we've been using for years contour next.com/juicebox. And if you already have a contra meter and you're buying test trips, doing so through the Juicebox Podcast link will help to support the show. Dan and I are looking at each other day, which we don't do very often but he's got like a rock solid internet connection and I have to admit, I can't look at myself because I can I can I'm so stunned at how like when I hope my god that's your that was

Deniz 26:32
that was that was just like after the like after took the benefit of that was This is horrible.

Scott Benner 26:37
Part of me wants to send that to me so I can make that the cover image for your episode. Oh, please.

Deniz 26:42
Oh, please don't and so and so. Oh, I'm sorry. I'm sorry. This was this was right after the injection. Okay. And then what I showed you this this was like the next morning. Oh my god. And I walked around this for like, like a solid month. Like,

Scott Benner 26:56
you look you look like a like a robot? Like yeah, exactly.

Deniz 27:00
I looked like what's the name? TT 1000. Yeah, yeah, the Terminator. Yeah, I looked like the Terminator was like, just the right I it was it was really stunning.

Scott Benner 27:09
Wow. Did it hurt during that time? Or just looked weird?

Deniz 27:13
No, it just it just looked really weird. And it it felt a bit like as if you know you you bumped your your arm or your your like leg on on something. Right? Like, just just like a mild hematoma basically. But it wasn't it wasn't really painful, right? I could see without any issues. Right? Right. And yeah, I just I just looked like a zombie for a month. So this,

Scott Benner 27:31
this experience makes you say, I want to know about all this stuff now. So like, what pump do you go to?

Deniz 27:37
So second thing, coming back to the Hey, why didn't you get into like pumping or whatever, and did MDI for so long? I always wanted like, I always wanted to avoid tubes. I always wanted to avoid tubing. Periods. I never wanted tubes. So I'm using Omnipod. Now, right? It's the clear choice. And the thing here in Germany is we do have great health care. And we do have, you know, it's not a huge issue to get on pumps, but they are a bit picky when it you know, gets to either want that specific pump. Because, you know, or they just want to reach in the closet and give you the one they have. Yeah, kind of. And so so my end there was like yeah, that's that's gonna be a bit of a fighting, right. And so he basically put in like a bunch of paperwork to the insurance company here. Then we really actually had to fight and then I got the only pot dash I am on now I got it on trial I had like they they shipped me three months worth of supply here. And then after three months, I had to hand in a ton of paperwork, you know, glucose diaries from like, the past six months a one sees and the whole blood panels from like the past year or so. You couldn't just show him that picture of your eye. No, no, no, no, no, no. I wasn't worried. I was already on a pump when that when that happened.

Scott Benner 28:48
Okay, so yeah, I mean, like, Yeah, this is why I please,

Deniz 28:53
exactly. So anyways, I was we were really fighting. And so I got it on trial. And after three months, everything was even better than it was before. So I went from like, the agency before I went on Omnipod was six, two, and the agency right after was four or five. So I it dropped by it dropped by a weight. Within a span of three months, you

Scott Benner 29:15
eat in a low carb style or something like that. No,

Deniz 29:18
I basically, I basically did the whole I'm training with the lady from insolate at the clinic. And the second pod at home was on loop. Because I was like, you know, I'm a software. I'm gonna do this

Scott Benner 29:32
right. So you went from 25 years of MDI, almost directly into I'm gonna download an algorithm off the internet and use it. Sure. What, why does that I love I love the why not? I'm trying to figure out why not sooner.

Deniz 29:45
That's true. That's true. Why don't sooner and I've actually,

Scott Benner 29:49
I mean to say I think there's a bit of a lag because you're in a different country. I'm sorry, I'm talking over you want to know outdoors. I don't mean like, Hey, why didn't you figure it out? I mean, like, why did it like it? Just see seems like such a natural step to me. Like you're a software developer, you're in your 30s. Like, if I said to you, Hey, you want a Tesla, right? You'd be like, Of course I do. Like that fits in like the narrative what you're interested in like, it just feels like this should as well, but you, but it really took like a health scare to get

Deniz 30:18
you there. It took a health scare to get there and I don't want to put any blame on my endo because he's a really super great guy. He's He's a type one himself. So great bedside manner, you know, because if you're like talking to him about a specific issue you're having at like, a specific activity or whatever, you know, he gets it, because he's, it's like 99.9% He had already had that situation right? But he's an older guy. And he is like on this super old pump and he's basically I guess, team don't change a running system right? It's working for him he's having like from you know, objectively looking at it he's having all the results in like the you know, agreed upon metrics or like in the agreed upon ranges basically, right. He you know, he has yes is a one sees in the ranges that should be in, he's, you know, he's not having a lot of high posts or whatever. He's, he's doing okay. And in retrospect, I wasn't doing okay, right. Yeah, I 100% was overweight. My Basal was too high 100%. And I was basically feeding insulin, but I didn't really know it right. Even though I had a CGM. And I was I was having more lows, like my lows were below 5%. But now I'm having like, like, looking at the Dexcom basically, I'm I don't even have 1% of loads. Now.

Scott Benner 31:32
Did you lose weight since you went on a pump? Not

Deniz 31:34
that much. And I thought, I'm weightlifting. Like six, six days, sorry, six days a week. And you know, it's eating a lot and I'm eating like 300 400 grams of carbs a day, you know, I'm not low type S Sorry, low carb rain in any kind of way. And form or shape? Yeah, no.

Scott Benner 31:50
Do you think if I named the episode six days a week, anybody will even hear it through your accent? That was fantastic. Like, I'm weightlifting, weightlifting, six days, six days a week.

Deniz 32:00
Yeah, go for it. Because because the Jerwood for six is six. Okay,

Scott Benner 32:04
I heard you get caught in between two languages. But so basically, you've got a great Endo, but he's older. His mark for what is good is different than what is good now. And he's, if it ain't broke, don't fix it person. In a world where things are moving so quickly. You always have to have an eye on what's happening. You don't need me. Exactly. Yeah, exactly. I don't know if you've ever like I don't know, then if you listen to the podcast, or you if you don't, or Oh,

Deniz 32:31
I do. I don't. So the thing is you released so freaking many episodes. I usually can't really get through like all of them by the time we release new ones, but I usually listen to like on the way to work and like my commuting. Yeah, I know. I'm also quite active in your group. Like, actually, you are a job. Yeah.

Scott Benner 32:52
Yes. Because I always I refer to one person, because the person helps me to Mike because Mike helps me with Arden's like algorithm, like the setup and stuff. And so if somebody has a question, I tagged him, and you're like, hey, you know, I can't answer that. And I'm like, I don't know you.

Deniz 33:08
But I'm actually commented that because I already had, like, answered the question of the poster. And I had, like, I don't know, like, like, 20 likes on it. And it was like, Hey, so what exactly can Mike dude I just answer here, and I was I wasn't being serious, right? It was.

Scott Benner 33:20
No, I know. You're kidding with me. But let me give you a little like, inside look, okay. Yeah, there's like 46,000 people in there. 125 new posts a day. I saw the gist of it. I ran my eyes through it. And I was like, I want to make sure sure somebody who really understands this solid, but I couldn't read all those comments. So I was just like, yeah, totally. Yeah. Like, it was, it was a lot of fun. But sorry,

Deniz 33:39
my endo is like don't fix it. Today, bro. kind of guy. Yeah.

Scott Benner 33:42
So I don't know how much of the podcast you've heard. But I put out a lot of content. There's no doubt you can't listen to all of it. And you can't, you can't have listened to the entire 10 years to know my psyche and everything. But there are a few things that drive me making the podcast right? Overwhelmingly, it's my daughter's health. Like, I think if I can stay abreast of things, then she has the best chance of being okay. And then everybody else listening gets the benefit of that. Right? Well, anonymous, and it's the community that it's created. Because, again, I've mentioned this before, I did not expect this part of it. I didn't understand that. Like, I mean, 46,000 people on a Facebook group, it gets 125 posts a day, like 9000 likes, comments, hearts. I think there's something like 28,000 of the 45,000 people are active every day in some way, shape, or form. It's like a small football stadium every day. It's insane, right? And it all flows, whether you think it or not. It all flows through me it follows my vibe, it does what I want it to do, like I'm directing it very kind of in the background. And so that all is very important to me, too. And part of what drives me because I see how the community supports people. And I see how people whose names I've never seen before, whose faces I don't recognize can come and tell me in a Facebook post. You don't know that I've been listening to this podcast for nine months but I have my kids they want CES 5.4 Yeah, like I helped that person without ever meeting them or knowing that I was talking to them. That's amazing, right. But the third kind of prong of what motivates me forward is the thing that I don't honestly talk about very much, which is my best friend who's, who's that, you know? So my boyfriend Mike was I don't know, you're, you're very kind to. But my friend Mike was diagnosed when we were just getting done High School. And we didn't talk about his type one diabetes, so much so that when my daughter was diagnosed, it didn't occur to me that I knew someone with type one for like a week. Oh, wow. Because that is just not how it worked. He was regular and mph, he shot. If he got dizzy, we fed him. Nobody wanted Mike to drive. You know what I mean? Like that was pretty much the extent of it. I knew him to be a completely lovely person, thoughtful and lovely and intelligent. But if you just met him a couple of times, you might think he was a little. It was probably like in the four hundreds I just stable, like angry like he thought he had a short temper. None of this is beautiful person. But I think about his blood sugar and how high it was all of the time. And oh boy, mike stands up in his living room and dies in his 40s, you know, just has a heart attack. And just, you know, it didn't take him that moment. But it it did in a couple of days. He was already on dialysis for years. Oh, wow. When I look back on his life, he was unlucky enough to be diagnosed at a certain time. Yeah. And then he was unlucky enough to be with a doctor who didn't push him to modernize his care. Yep. And I'm certainly not for just running forward and changing every time something new comes up. Like I'm not a new car guy every six months, kind of like idea even if I could afford it. But you can't find yourself in a situation where 15 years into your diabetes, you look up and go, what are people doing? I'm doing? I'm doing Lantis and MDI, yeah, you know what I mean? Like, because the advancements now are happening so quickly, that things are going to get better and better and better. And these are only opportunities to improve your health. And to stop you from standing up in your living room and falling face forward in front of your wife. Yeah, you know, like, so I just, these are the things that like, personally drive me behind the scenes to turn out. I mean, you if you saw my calendar, you'd pass out like I you know what I mean? Because I don't care if you please, everyone listening, listen to every episode, please. But if you can, I understand up so I put five out a week, you pick the ones you want. You know what I mean? And and that's what I do, basically. Yeah. But that's why because I'm trying to constantly reach people. I mean, if I'm being honest, then I have some guilt about Mike. Because of all the people that I've reached and helped. He would never listen to me. It's kind of ironic, right? Like, I'm like, you know, the guy that runs the thing. Like, I'll tell you, and he didn't want to he didn't want to hear it. And I do think sometimes that I just didn't try the right way or hard enough or frequently enough. And I am baffled sometimes that I'm able to help a person I've never met before remotely, but I couldn't help Mike to understand his diabetes better. I'm driven by the idea that I in very plain English do not want to die before my daughter. Yep. And I do not want to see her have health issues as an old man. Yep. Like, I don't know that in my 70s. I could look at my, my grown child have a real health issue and not want to throw myself off a building. So I'm doing a lot of things to protect my own psyche, if I'm being honest, you know.

Deniz 38:42
So just just just for the record, just for the record, Mike really got his together. I think you're talking about a person like Mike, right? You kind of know, but don't listen to the podcast. Did I get that right?

Scott Benner 38:53
No, no, my friend Mike is the friend. I'm not talking about the other mic. I'm sticking with my friend Mike is I grew up yeah, I'm sorry. I'm sorry. Okay. He just didn't. Yeah, never. I don't even think he ever wondered. Yeah. And then he didn't have the luck you I can't believe I'm saying this is luck. But he didn't have the luck. You had, like the first medical thing that popped up for Mike was his kidneys. Not like we can give you some injections in Iran. Yeah, yeah. You know, anyway, anyways. Yeah, yeah. Oh, sorry. But tell No, no, no,

Deniz 39:27
I'm very sorry. But it's basically you know, you're raising such a great, great point, because, like, my girlfriend was just, I think just the other day, we were like, sitting down for dinner. And she goes like, no, what? How come you didn't like do this all sooner? And I was like, we've been together for almost nine years now. And, you know, you've met me you've been part of my like, diabetes journey and you know, my life, right? What would you say? Like, was I living a bad life? Was I having issues with it? And she's like, You know what? No, you weren't right. And so I was like, Yeah, That's the point exactly. And it's so funny, not wanting to change topics here, but actually the great Katie De Simone, right, the creator of loop docs, I was actually following her on Instagram, because she started like a way to like, like a weight loss journey and started doing like CrossFit. I remember and I kind of knew her from loop because I had read off loop. And then I started kind of started, like, following her on Instagram. And we actually were like, exchanging messages on like, on a regular basis around her like, exercise stuff. And because I'm a gym person, she was a gym person. It was COVID. Right? We were working from home and in like a garage and stuff. And it was so funny. And it's like, it's like this thing like, these are like weird stories live right sometimes on the day, Katie passed away, right restaurant piece. I got my first pop. Okay, so I'm getting goosebumps right now talking about it. But it's it's like I've I've known these kinds of things. But for some reason, when you're like, not really pushed into that kind of direction. Because I was having like, high fives a one season, I wasn't constantly going low, or like staying super high all the time. Right. And so for some odd reason, and I can't really tell you why I honestly cannot tell you why I never got into it. And now looking back, it's like, I'm just doing so much less around diabetes. Yeah, like, right. It's like, I haven't CGM. Now I have a pump. Now I have an app that takes care of my insulin. Basically, I look at my phone, right? I've only looked at my phone. Since we've been talking because I'm getting messages all the time. I'm not even concerned about my diabetes, right? It's just I'm just, I'm doing a Bolus here and there, and the rest is taken care of. Right.

Scott Benner 41:33
I've been unaware of Arden's blood sugar for hours. Now, I don't know what it is or what it's doing. I haven't thought about it. The only reason I even thought about this morning is because we just upped her ozempic dose from 1.25 2.5. And then, like a day and a half after we opted, she started having these weird lows. And it was like, Oh, God, I think it's the ozempic and we're making changes to settings and stuff like that. I'm also a little panicky, because I have all the auto tuning turned on on Iaps. I think we realized that the ozempic needed to be turned up for a couple of weeks, but didn't like do it yet. Yeah. And so the the algorithm was pushing harder. And then suddenly, we thought, Oh, now it's helping and the algorithm is still pushing, so I'm trying to make adjustments and stuff. It turns out by the way, that's not where her lows were coming from her pocket. nicked up blood vessel. It's a second time. Second time it's happened since she's had diabetes. But we were basically she was mainlining insulin, like, yeah, it's like, it's like they're like this. Yeah, so quickly. So like, last night, I was like Arden luck. And like, we keep making these changes and nothing's happening. You know, like, We're chopping at your ISF. We're chopping it your carb ratio, Mike, you know, something's wrong. And and then two o'clock in the morning, she sent me a picture of like, this blood on her leg? Oh, yeah. Because she pulled upon it just like a fountain. Yeah. And she goes, Oh, I know what happened. And I was like, okay, so she put a new pot on, and we got her set. And I just sent her a text, like six hours ago. And I was like, hey, put the ISF back to this. And that said, I haven't thought about it again since

Deniz 43:06
then. Yeah, no, yes. It's the funny thing is, yeah, but I

Scott Benner 43:11
mean, all that turmoil and unknown ideas and things you couldn't imagine. And still in a 24 hour period, I had the whole thing worked out, and we're good again. And now I won't look at it again, should just go live her life. You know? Yep. So now I take your point. So, so when you get on this algorithm, and you're you're managing an agency in the forest, Jesus, that's crazy. Why are you able to do that? I know you're exercising, and you're probably

Deniz 43:36
in the five, sorry, five, excuse

Scott Benner 43:39
me, low five. So if you're exercising and eating well, and you're using an algorithm, and you understand how the algorithm works, I get how you end up there, like it's pretty simple. But can you lay it out for people? Like why does it work for you?

Deniz 43:50
Well, so I always when I'm getting asked and like the Facebook groups that I'm part of, right? I always say I'm just proactive Rama diabetes, basically. I work out six days a week. So there's like a certain exercise level already in there. Right? I try you had the glucose goddess on your podcast, and I really enjoyed that episode, actually. But um, she talks about like, clothing the carbs. And I've like intuitively been eating like that for four years now. Right? It's always basically a handful of carbs a handful protein a handful, the veg. I like that, right? It's, it's been like that for like the past. I don't know how many years. If I have my CGM Allah, it's quite low. Right? I have during the day I have it at 155 milligrams, deciliter. I haven't on 155. So I'm kind of proactive around that. Right. If I'm working seated for most of the day, I'm a software engineer. So after lunch, I tried to take a walk. First of all to like get my blood going because I've been sitting for the past five hours so you don't just you know a poor, right? But but it's just it's just I have lunch with my colleagues. I really enjoy having that and then I just go for like a 10 minute walk, get a coffee, have my coffee in my hand and just walk around like like take a walk around the block. that kind of stuff, right? If you basically understand how, like the human body's metabolism works, and how insulin affects it, and how like glucose affects it, it's like, this is gonna sound like pretentious analysis, but it's not rocket science. Once it clicks, once you've understood, like, how to how the heck it works, it's not really that hard. I'm gonna

Scott Benner 45:20
say something. It's gonna sound crazy for a second. I mentioned this to you before we started, but you can see it behind me because the cameras on Yeah, so my kids at Christmas time. I don't know if I have to tell the story. Like I can tell it in two seconds. But we basically were standing around a few days before Christmas. Yep. And I said to everybody else, like name, something you wish you'd done that you haven't done? It was just like a thought exercise to have a conversation. And it got around to me. And I think I blew everybody away by saying I've always wanted to raise a chameleon. And everybody was like, you've never mentioned that once. And I was like, No, it's not a thing I talked about, it's very difficult to do. It's a lot of effort. It's not a thing I would actually do because of all the effort. But it's a thing. And I think about what some I wish I would have tried that. Anyway, now there's a chameleon here with me. And, and I've had to learn about like it very quickly, because it's a delicate animal. And I don't have months to figure it out. I had like, days to figure it out. And oddly enough, I figured out how to keep this chameleon healthy the same way people use my podcast to learn about their diabetes. And these intersecting ideas have just been falling on me for weeks now, like, found a man named Bill out in the world who just has a like a ton of knowledge, and he's good at communicating it. Yep. And I absorbed what he said. And in no time put this thing in a really healthy situation. Neither here nor there. I'm watching how it eats. And it eats to ensure its bowel movement. It's very interesting. Like it. It's got like these four or five bugs that it really likes. Some of them have more fat in them. Some of them have more. I don't know. calcium in them, etc. Yep. And that thing will like yesterday, just boom, boom, boom, and it'll eat for crickets. Like it's nothing. Yep. And then the next day you show it a cricket? And it's like, no, no. And then you wait, and you come back to a very well hydrated bug that's high in fat. And it goes, Yes, that one. And it hits that cricket. And then every then it it's fascinating. It's all about it's digestion. Like it's whole light. But it knows, like it knows how to turn its nose up at something when it has an option. And as people, we don't know what we're talking about. You know what I mean? Like, we don't understand food. Nope, most people don't understand food. And so it mean, anyway, that's exactly what you're talking about, is putting in the right things, giving yourself the right exercise. This chameleons case, it's about humidity. In your case, it's going for a walk and exercise. Yep. You know, and then your body works. Well. It's interesting. Oh, yes. Sorry.

Deniz 47:52
So and also with like, the whole eye thing, I finally talked to me. And I was like, Yeah, so what do we have to do? Right? And I was I was talking about, like, how he said, we have to, like, try to keep the fluctuations low and stuff. So I've been in like the high 80s range on MDI. And since I've, I've jumped ship, and I'm on I'm on an AI D now and I got the top now, I'm on a certain app now. You know, it's, it's basically I have to cut things to not be 100% Time Range. Okay. Yeah. Right. But but for me, and this is this is actually whether this whole thing is an issue on like, the mental side of things. If I am 100%, time in range, but if I'm 160 for the past six hours, I get achy. Yeah. Right. And, and it's not like it's not because I know, you know, I'm gonna die, but it's like, you know, I'm just above like, a certain level I don't really want to want to be at right. And so I I'm kind of getting like, slightly irritated. I'm like, Okay, guys, I'm gonna go for a walk now. Right? Or, Hey, guys, I'm gonna go on a treadmill alone. So it's, it's like, I've really, I really try to be in like a, what they call tight timing range. So between like, 7140, ideally, even below that, right. And I really tried to be there. And because I also came to find out, you know, if I'm, if I'm basically above 160, I start to feel a certain cognitive decline. Yeah, I really feel it at work, for example. So I tried to be below that, because it just affects me in my day to day life.

Scott Benner 49:24
Ya know, I noticed that first when Arden was younger, and she played softball that over a certain number, her foot speed literally diminished. Yeah, she just she was slower all the sudden. Yeah. And you're saying because you're doing a, you know, a thoughtful job, you can feel your cognition. And I would imagine to a third wheel, a third prong of this wheel is you're also thinking, ooh, complications, like you now have that in your head where you didn't have that before. Right? So it's how I actually feel it's how I actually think and it's an eye on the future, which is the thing by the way you brought up earlier when you asked your girlfriend like was I did I really look like I wasn't doing well. The one thing you didn't have during that time. I was an eye on the future. I didn't mean to say I on that's seemed like a weird pun. But I didn't mean it that way. No pun intended a red eye on the future. Should I call it red eye on the future? Oh, wait a minute now we're getting there. Red eye on the future. It's a little long, but I don't hate. That, to me is what you were lacking. It's what everyone's lacking. I know that sounds overly simplistic, but we're all lacking giving enough consideration to the thing we can't see or imagine. Yes. You know, that's pretty much what you're doing here. So yeah, exactly. There was part of me that when I knew you were coming on, like, I really did want to talk about IEPs a little bit and how it works. But I don't know how comfortable you are with that because of things that are well,

Deniz 50:45
I mean, if you got questions, let go, right, I can, I can totally answer questions. I've been on it for the better portion of like, oh, eight, nine months now. Okay, because so I'm See I got on loop. And I didn't just get on loop. I also jumped into the whole, you know, DIY community. And I basically jumped like both feet and head ahead, through the wall, basically. So like, two months later, I was I was answering questions. And like three months later, I was I started contributing to the projects, right? Because I was like, this is, you know, I want to pay it forward. And so by now, I'm a moderator in the loop of learn group, if I may plug them here, right. I was a moderator in the IPS group. But I still helped around that application, I contributed in a major way to what people may or may not know, as the browser build methods, right? I improved the build method there and, you know, improved automations in that regard. And yeah, I'm just I'm just part of like, a bigger community now that I kind of want to see thrive. Yeah. Right. And so ask away by any means.

Scott Benner 51:49
So I am in the position where the other mic that you thought I was confusing earlier, Mike, Mike has been on the podcast and who helped me build Arden's app? Yes, he gave me the lead in settings. He's just basically went through every menu and was like this, that make that one this this like that. So I don't know why I started where I started. And the truth is, is that once it was set up, it didn't need a lot of dial turning to get it there. Yep. You know, I just had to get her Basal rate or insulin sensitivity and or carb ratio. And once I got all that, right, it ran pretty well. And then one day, I was like, this thing says, it has like dynamic settings and like auto tuning and stuff like that. And I was just like, blink. I'll turn that on and see what happens. Yeah, this is the first system that I'm using with Arden that Arden's using, yeah, that I don't think I can thoughtfully talk about its execution. I just know it's working. And I know if I keep her settings commensurate with her needs, that the rest of it kind of works. Yep. Do you know all those settings? Because it feels like there's 50 settings? Like do you could you go to every one of them say, Oh, this one's 3.8. But I know why it needs to be 3.7. Like, you're not asking well,

Deniz 53:00
even though there was like a bunch of settings in there, which is also what makes it like very much more complicated to like get into compared to loot, basically, right? There are like a handful of settings, I want to say maybe like a dozen at max, right, that you kind of have to look at. And then if you get those settings and your like normal profile stuff, so like Basal carb ratio, ISF fine tunes. And then also, depending on what kind of dynamic algorithm you choose, there is logarithmic and sigmoid in it. It uses your profile settings in a different way. Basically, you are kind of, you know, off to a really good start and off to like, oh, not a good start. Do you really? It's gonna work? Well. Yeah. So I have said, if you're talking about auto tune, and if Auto Tune is on for Arden, while using dynamic please turned off.

Scott Benner 53:48
Okay, so auto tune and dynamic can't be on at the same time. It shouldn't be on No. So what's auto tune?

Deniz 53:55
Auto Tune is basically does every 24 hours, it kind of looks at what what happened, so to speak, and it adjusts your Basal and if you choose to do to let it do it. Also your eyes F and your corporations. Okay. And it basically overrides what is in your settings for that. And but mainly basil here is the problem because depending on what dynamic algorithm you're on, I think you're on logarithmic, I guess I don't know if I'll

Scott Benner 54:21
say that. And I thought I have no idea which one that is,

Deniz 54:25
I think you're on the default one. And the default one doesn't really rely that much on the profile is F okay. If you if you got if you got auto tune on. And the way this algorithm that works are like the grants below the IPS interface works is basically with every loop that it does, like with every cycle that it does, which is every five minutes there comes a new CGM rating. And with the new CGM rating, that's basically the heartbeat and then it takes a bunch of things into consideration. Your IRB, your current glucose, and then it does predictions. You've seen those four lines, right? Basically it's five lines But you've seen several lines. And depending on certain conditions, it's averaging those multiple lines basically into like one prediction is what it wants to use. And based on this prediction, it basically decides, Okay, I'm going to issue a zero temporary Basal, I'm going to issue a temporary Basal that's increased, or I'm gonna give you an SMB, which is a super micro Bolus. And based on this algorithmic choice, you're getting insulin. And so now, while it does that, dynamically for our now, because you've toggled on the dynamic stuff, so it will also change like every five minutes, it may also adjust basically her ISF, and it may adjust for Operation depending on if you toggle that on or not. Basil is very, very, very important in that decision, basically, because because it takes your basil profile into consideration when it's doing the whole calculations around it, like whether it should issue a temporary basil or whether it should issue an SMB and what the dosage of that SMB should be like, if you got auto tune on to like, come back full circle here, if you got auto tune on, you have something that check like that may change Arden's basil every day of the week. So you're now trying to do like math calculations, it's a bit like you're in high school, and they give you a math test. And every five minutes I come to you and I just rip the paper out from you give you a new paper with like new numbers, and you have to restart all over again. Okay, that's kind of what happens when you got auditory with dynamical. So it's like me shouting at you giving you new numbers and expecting you to get perfect results with it. It's like an ever changing bases. So

Scott Benner 56:31
it's one of the other dynamic settings on or auto tune on not either not both, but which which do you have on,

Deniz 56:39
I have dynamic on I have never used auditing, because I know that my the Basal profile that I have in here is basically really, really well set. If I look at my IPs, when I get up, I am basically flatlining and I do intermittent fasting or like, I don't want to call it intermittent fasting. But I usually have like the first meal of the day between like 1130 and 1pm ish, right? So and I had my last thing to eat, like maybe 10. Right 10pm. So there's at least like 10 to 12 hours in there. And I'm usually quite flat in there. So I know my basic settings are pretty well and pretty well tuned, right. And so I don't want something in there that just keeps keeps changing it. And also, I know the math behind it to an extent. So I just don't I want to avoid basically the whole, ever changing thing, unlike me shouting new numbers for you while you're doing them off test. Gotcha.

Scott Benner 57:31
Is there a world where being a female that's getting your period? Is there a value in like, once a week going to the auto tune and be in like, here, do it now? And then like instead of it happening all the time? Because you're gonna get like, I mean, your, your trust me?

Deniz 57:51
I'm aware of what you mean, because everyone

Scott Benner 57:55
is lucky. But yeah, like, you know, you could be three or four different people every month, as far as diabetes is concerned. So

Deniz 58:01
I don't want to give like advice on that kind of stuff. Because I am no woman, right? I don't get I get don't get my period, right. But just from like, where I stand and what I know about the algorithm, I wouldn't, I still wouldn't turn on auditing, because basically, the EPA is taking care of those fluctuations for you. Okay, and if you really feel like you're not getting enough insulin, I would just put on like a temp target, that just raises you a bit sorry, that like drops, you bet. So to increase the thing, IVs also got the profiles. So you could you know, you could use that and just go on like 120 a person profile if you feel like that. But usually the way this whole thing works, if it sees you are more resistant, it will like lower the ISF number which basically makes the algorithm more aggressive, and it gives you a bit more insulin. Yeah. And the same thing around, right. If if you know the period has ended, and you're back to normal, quote, unquote, right, or normal world period. Sorry, I don't want to say that. But it's like the bodily resistance and insulin needs go back to your fewer impacts from hormones. Exactly. Yes. If you go back, if you go back to that, the app should also kind of like sense that an extent. And, and also what's what's very important, and I kind of want to like really, really emphasize all that while being on here with you. None of the applications that we currently have, apart from a very specific sub branch of Android APS, which I'm not going to get into because I don't really know a lot about it. They do not learn. People talk about learn dynamic is F in IPs or the other apps and it's learning how you function and that kind of stuff. It doesn't learn it is not a machine learning thing. It doesn't do like neural networks. It doesn't do machine learning or artificial intelligence. What it does is it looks at your total daily delivery insulin right from between the past hour to up to 14 days in deferral different like weightings, right and it averages that basically and based on More or less on your use insulin usage use stuff. Yes to decide how to doesn't. Exactly right. It doesn't learn in any kind of way. Yeah. And also, if you jump on to the app, and you want to toggle on the dynamic, it'll actually tell you the first 24 hours, it can't do it, because it doesn't have enough data. So

Scott Benner 1:00:19
I want to be clear, too, I don't think auto tunes on Ardennes. I just wanted to have a conversation, but You scared me enough that I'll double check. I'm sorry. No, no, no, not scared in a bad way. So let me ask a different question about IEPs. Yes. What about the people I've had one of them on here, who tells me I'm on IEP s, I don't even bother bolusing for meals, how I can't figure that one out. I

Deniz 1:00:44
can't really tell you how they do it. A lot of the people that do that they have very, very aggressive settings. Right. And so they may run like may or may not run into specific issues around like, you know, unannounced exercise. So if you just like, give me a bunch of insulin, because it's sense that you were like eating and then suddenly you decide to oh, you know what, I'm, I'm gonna go to the gym after all right? So they might have to cover all the iob. So the sorry, the insulin on board with a quick snack or whatever. A lot of the people that also do focus looping, have a long history of basically diabetes, and they have fine tuned the living s out of their settings. Yeah. So a lot of people hear about these kinds of algorithms. And then IPS is like the only one they hear about these kinds of apps. And then they hear about certain people that you know, they are like FCL, so full closed loop, and they don't Bolus they just start eating and the app takes care of that. And then they go like, I want that. Yeah, it doesn't work that way. It's basically like you're saying, you're looking at the sky, and you seeing an aeroplane and you go, oh, I want to fly that and expecting to just because you like board a 747 you can just fight. It doesn't work that way. It takes a deck and figure it out. Yeah, it takes a decade and you know, a long time educating yourself and becoming a pilot and getting a license and you know, getting trained on that kind of stuff. And it's similar on that with FCL. What I personally do, I'm not gonna lie, I'm not FCL, right. And by any means, I might or might not announce my meals. So sometimes I don't really feel like it. Sometimes I put in something, it's all it's always eyeballed. Right. I don't really weigh that much of my stuff. Yeah. And I do a Pre-Bolus every single time. So I do Pre-Bolus. But I will only do Pre-Bolus If it's a bigger meal. So if I just I don't know, if I just want to have an apple, which is between 15 to 30 grams of carbs, depending on you know, the size of apple and how sweet it is. Yeah, I might not even announce it. I might not even Bolus food. But if I'm sitting at work, and I feel like oh my God, I need a coffee into Snickers because this problem I'm working on right now is really bad. I will give myself you know, one or two units just to like, get things going. And you know, that's how I use the app. So I'm kind of hands off, but I'm not entirely.

Scott Benner 1:02:53
It's interesting to hear you talk about it the way I think about it, you know, like get things going throw some insulin in there, get it on our site, like, you know, that kind of stuff. Yeah, it's, I think how you have to think about it. I had one other question about this. Sure. I find it it heavily manages with boluses. And taking away Basal Yeah, but I can see long segments of zero Basal with

Deniz 1:03:16
good blood sugars. That's because how the algorithm which which is the the so it's the RF algorithm, which comes from an application you might or might not know, it's called the Open APS algorithm, invented by Dana Lewis and Scott Lybrand.

Scott Benner 1:03:29
They found them I guess, years ago. Yes. Okay. So it

Deniz 1:03:33
basically uses a version of that heavily adjusted and heavily built on like stuff on that. But it's like, the basic algorithm, I want to say is RF and, or if that's the thing that I explained earlier, which is like, it takes certain metrics every five minutes, and it does like those five predictions, and then it depending on certain conditions of those predictions, it does averages of those predictions. And then it comes out with like the quote unquote, final prediction, and then it goes based on that. And that entire algorithm is heavily based on Super micro Bolus. So and that's why you see a lot of like, timespans during the day where where the user might not be getting, like basil. Yeah, but that's usually around glucose fluctuation and usually also involves food. So for example, you like when I go to bed? I don't have an SMB between like midnight and 6am. Yeah, I only have a slight I only have like slight temporary basil adjustments operates maybe, but I usually don't get an SMB. But the minute I wake up and then have a coffee, and I usually spike quite badly on coffee, even though I drink it black or just like splash of milk. I see SMBs going in, boom, boom, boom, boom, boom. But that's just the way the algorithm works. Yeah, the algorithm basically decides on is it okay if I just do a mild, temporary Basal, so mild increase of the profile bezel, but do I need to give a Supermicro Bolus? And then also there's this thing with orif, which is Like, I don't want to say like this, but I'm gonna say it. It kind of borrows basil. But but not that, that you're not getting insulin, but it basically looks at your current basil. And then depending on certain settings, it looks at like what is your basil profile right now and what may be in so and so many minutes, and it kind of takes that number as a basis for the calculations. And that's why it's so super important than sort of swearing. But it really is important that you have a really, really good Basal profile, even though you may not be seeing Basal being dosed. Because it takes that number as like a calculation basis. And that's why I was saying don't use auditing, because it keeps changing that basis.

Scott Benner 1:05:36
Basically, when it gives you one of those super micro boluses. It's already thinking about here, take what you need, plus let me throw some of this basil into and then it'll manage backwards with a lower basil.

Deniz 1:05:47
To an extent to an extent, it'll often do like a temporary Basil of zero. So, like, you would call it zero tamping out or zero tamping because he kind of knows, okay, you are currently on one unit of Basal for the current hour, and you know, you need this much insulin, so I'm going to Temp Basal you zero for the next seven so many minutes, because I gave you this much insulin. And then if you start if you if you rise more and more and more, because maybe you've we've ate something or whatever it factors other things in and then it might may give you more insulin. But if it just gives you a correction, for example, and it, it may take that away, it's very math heavy, and it's a lot of calculations in the background, you know, and I don't want to like say false things. To go back to your question, I'm sorry, I'm kind of going over things, you're fine. It is a very normal thing to be seeing, like a Bolus Basal distribution of around like, I don't know, like 1010 to 90, or like 15 to 85. I also want to add that personal side note here, and to the listeners or whatever, if you've got an endo, and you're on one of these systems, or if you even if you're on oh five, and the end goes like you need a Basal Bolus distribution of 5050. Tell him to himself, because that is such an antiquated, like, way of thinking about this, because at the end of the day, this is insulin in your body. And you as a healthy person, your pancreas doesn't think like, oh, well, I'm going to give Scott points something of basil now. And now he just stuffed a doughnut in his face. And now I'm gonna give him a Bolus, it'll just secrete insulin, right? Personally, I think that we really need to stop thinking about like, things like like that and try to basically apply thinking of like a healthy pancreas to diabetics, right? It is insulin, you're in your body and you need insulin in your body. And we just make up these, these these things in these systems to like, make it easier for diabetics. And like the people that you know, go through it, but still it's, it's it's insulin, even

Scott Benner 1:07:32
when you talk about Omnipod, five, like when you first started up, they want you like 5050, but within 36 to 48 hours the pumps make it'll change completely different decisions that exactly don't look anything like that. But it means that on day one, yep. And you're right, as far as antiquated, goes, it's just the way that people like you mentioned earlier, I was over basil, when you were with an older doctor, he had your basil up high, because that's how they used to think about it. Like we'll give him extra basil, because we know they're not going to Bolus for their food, like and then all of a sudden that becomes like a rule. And no one knows how it became a rule. You know what I mean? And then Yep, on and on and on. But these algorithms are not like you're right, like the settings have to be right. And they need the autonomy to work within the good setting. But then the ratio in which you get insulin from Bolus to Basal, it could look nonsensical to you like to the naked eye. But it's working. It's so yeah,

Deniz 1:08:26
sometimes I think about like apps like IPs or loop or Android APS, right? Because they may do some things differently. But you know, ballpark, they're more or less the same. Yeah, I sometimes think about them, like, like a German Shepherd on my site, but on a leash. Right? He might bark at you. And if I if I let it go run, it might have to do for me, or it might, you know, do do aggressive things, if I let it do it, right. But if I say here, and if as I come, it's gonna come back, right? Because it's a very, very well trained German Shepherd on my leash basically. And it's super important that I kind of let it run and let it roam to an to an extent, but also to kind of know what is happening. That's that's this. That's the thing. And that's also why IPS is a very non beginner friendly application in my in my personal opinion, and why beginners shouldn't be getting onto the application, despite certain issues with with that whole ecosystem right now. Because essentially, you need to really understand diabetes well, because as a new beginner, especially with things like dynamic ISF, and dynamic harp ratios, and auto sense adjusting stuff for you, you might actually like you might not be realizing if things are actually going wrong. Or if the app is behaving the way it's behaving like the amount of people that come to the loop and learn group and go like it's taking basil away right now, but I am at 220 Why is it doing that? And then you go like, Yeah, but it's just given you like 10 SMBs over the past 50 minutes. Yeah, right. So you got your answer, but it's taken Basal away. I need my I need my basil. No. You need to understand how it works. And if, and I don't want to say like, you know, like, I don't want to sound like a teacher, you know, pointing the finger up. But it's important that people understand what they kind of use. Because with these types of applications, you know, it's yeah, they do give you insulin right. And you kind of need to understand that it's pretty important. So, yeah,

Scott Benner 1:10:18
I agree. I do see once in a while, if, if Arden gets a stuck higher blood sugar, yep. If you manually push the Basal even sometimes just for 20 minutes, you can break that high blood sugar without causing a low. And if you left it alone, it'll stay stuck there. So but it's, it's a very infrequent thing that I can't put my finger on exactly when it's happening, or why it's happening. It's just it happens. Sometimes you don't I mean,

Deniz 1:10:46
usually, when I go hypo on on this application, it's when I think I'm smarter than Okay, when I look at it, and I see, okay, it just gave me six SMBs. And I have like, 15 grams of carbs on board. But I'm, I'm already at two point something iob. And I decide like, you know, I'm at 161, I'm gonna give like half a unit. And then I do stuff. And then like, you know, 30 minutes later, I'm suddenly like, two arrows that like double arrows down. Yeah. And I'm like, Oh, dang, yeah, I shouldn't have done that half unit. I shouldn't have I should have known better. And, and it's the funny thing. I know how this works. And I still fall victim to that kind of thinking sometimes. And then I just give the half unit. And then you know, then you have like a sip of juice, or I don't know, right. But it's it's a human thing. I think it's like, I am the human here. I know. I know. I know.

Scott Benner 1:11:34
I'll figure it out. And then it's like, no, you are wrong. Yeah, exactly. Then this has been terrific. I'd like to, at some point in the future to talk like more nuts and bolts about how the algorithm works. Oh, sure. Yeah. But for now, this was this was really good. Did we miss anything that you want to talk about? I mean, we started off very oddly talking about your relationship with your parents, which I didn't think was going to happen at all. And I think we've gone on a little bit of a journey. So I feel like we've done a good job.

Deniz 1:11:58
We did. Yeah, we did we Yeah, no, I don't know if I may plug them. I already plugged them before, but I'm gonna say it again. If you guys like if there are guys out there, they want to get into DIY looping with on iOS, because it's kind of iOS centric, but we help on all systems. There's the loop and they're a Facebook group. There's also websites, looping learn.org, we're happy bunch of people, from all timezones all around the world. So we are literally 24/7 365. Yeah, around questions. We also provide much of the like built infrastructure for iOS loop, and also for IPs. So if you're building these kinds of apps, you're using tools that we provide on like a volunteer basis. If I also may plug in other organization, if you want to donate and help out people, I may ask to donate for the night Scout foundation. Yeah, a lot of people in the DIY space know Nightscout. Because it's a cool tool that, you know, you can view sugars on and you know, use a CGM data. And if you're on one of these apps, you can also see the insulin going in. But what many don't know is that the NSF isn't just, you know, keeping the Nightscout ecosystem alive. They also, you know, pay for, like help pay developers pay for, like testing devices. So for example, I know, I know, developer that got an iPhone, you know, got some money for an iPhone to test things by the NSF. I was given some money to go to conference in San Diego last November by the NSF. So if there are people out there that can spare $1, to donate it to the ISF. Right? That's a cool thing for us. And apart from that, no, I don't have any more things to say, Man, I really enjoyed being here.

Scott Benner 1:13:31
I did, too. i It's funny how much of what we use, I don't even understand. Like, I know, that's odd. Like, I know, I pay somebody every month to house something. I don't even know what it is, like information somewhere in this mystical, you could use this one or that one. I'm like, I don't know what to do. Like, you didn't mean like, it's just it's working. So I'm not touching it. But But I don't know, like, I know how important like the night Scout foundation is. I don't know why. It's funny. Like I'm like, I mean, I know it, we need it to work. And but it's the give and take between having something centralized and controlled by a company. And how important that is for so many different ideas. But if you do it this way, and it's you know, a community based and open source, you know, well, then you keep the, you know, everything keeps moving forward, because it's not a business. You're not like, Oh, we got there, we're selling it people like it, it's good. Leave it like this, you're like, oh, let's make it better. Let's improve. Let's hear from other people, to both aspects of it, have real positives, and then they both have negatives, too. If we just said to a company, just go by that just go take this algorithm, make it make a pump with it. Right? I bet you I know about where my data is being housed, and like I'd understand what was happening then that would be very smooth for me. Yeah, but they'd probably also sit on the algorithm for five years and not do anything with it. And so you don't mean like it's also

Deniz 1:14:54
I would have a very funny story. I don't think we have enough time for it. But I was at this conference last November, and a guy from a Tronic was there. And he was basically presenting the, I think they call like, something about about miss meals, I don't want to mispronounce the name they have for it, right. But the 780 basically has like a missed meal function. And another very known, dry veteran went up to him and asked him, hey, what you presented today, it sounds a whole lot like the unannounced meal feature in in the aura algorithm. He didn't say much. But the face that he gave, and the expression basically said a lot, right. And we were standing in like a crowd. And you know, everyone kind of like just chuckled in you, right? It was almost kind of those kinds of moments where you go like, Ah, okay, yeah,

Scott Benner 1:15:44
I there's got to be a blend of Yeah, I don't know what the answer is, obviously, I'm pretty far on the outside of it. But I think of my job around algorithms, like Do It Yourself algorithms is like, I think I'm doing the thing I can do for it, which is to let people talk about it and let people hear about it. I mean, there's this one thing, I'm always disappointed at the limitations of Facebook, because I see like looping learn that Facebook group is a great example. If there was a way that I could start a suite of Facebook groups, and fold things not that they would want me to, but like just supposing out loud, if you could have, you know, how the you remember the old, just how old boards used to work link, you know, there was a tree on the left, and it's like, Hey, we're gonna talk about black and this one white, and this one green in this one purple and this one. And you could jump if you could do that. And Facebook, like a message board could like a proper message, oh, my god, like a message board, then you could fold these things together. And then you would have like, not for I mean, Lupin learns a great Facebook group, but you're not touching the number of people I am and the kind of traffic I am like, imagine if those conversations could happen in front of more people how much more quickly it might expand. And but that doesn't exist. So like, everything's a given take, I don't know, I just went down a weird road there. But everything's that give and take. And there's moments where I wish we could go faster in some spots. And there's moments and when I wish there was more money involved in some things. And I mean, like, organizational structured money, and you know, that kind of thinking, anyway, it's all working pretty well. It's hard to argue with it.

Deniz 1:17:19
But yeah, it's working pretty well. And you know, all the money. It always comes with, like strings attached. Right. So we, the thing is, I think what we got right now it works pretty well. And I've got this for 27 years now Arden's going on I don't know, close to 20, I guess. Oh, God, 18 or something. Anyways, yeah, what I'm trying to make is I was diagnosed, like in the last millennia, and I was told in the next five years, there's a cure. And I've talked to so many diabetics, diabetics that had diabetes for like, 6065 years. And you know, even back then they were told guys in five to 10 years, there's going to be cure, it's common. So, right. So it's what we got here is pretty awesome. And it's amazing, like, the disk space I am in is basically like, you know, improved and driven and by volunteers, and that put like, countless hours every week into this. And I hope it stays healthy for a long time until it's not needed anymore. Essentially.

Scott Benner 1:18:16
Oh, damn, listen, I'll go through them all. Medtronic 670 G tandem control, like QX two Omnipod, five, loop Iaps you know, Android all Android API.

Deniz 1:18:28
All of it. At Domino's. I let the bionic pelgrane Do the very the

Scott Benner 1:18:33
things. As long as you understand basic concepts of diabetes have access to insulin, a CGM. The stories about people like my friend Mike, that they're not going to exist anymore. Like this is this is it? You know, like we're, we're running at this point. Yeah. Yeah, it's fantastic. All right. I'll let you go. I don't what time is it? Where you are?

Deniz 1:18:54
It's three past 831

Scott Benner 1:18:58
You're gonna fall asleep and you're very old. Oh,

Deniz 1:19:00
no, I'm gonna head to the gym now. And then when I'm back, I'm gonna eat and then I'm gonna go to bed. Because I've just I've just sat on a podcast with you for two hours. I gotta move. You gotta get oh yeah.

Scott Benner 1:19:11
As soon as I get done speaking to hold on for me one second.

A huge thanks to a longtime sponsor touched by type one, please check them out on Facebook, Instagram, and at touched by type one.org. If you're looking to support an organization that supporting people with type one diabetes, check out touched by type one. A huge thanks to the contour next gen blood glucose meter for sponsoring this episode of The Juicebox Podcast. Learn more and get started today at contour next one.com/juicebox. Did you know if just one person in your family has type one diabetes, you're up to 15 times more likely to get it to screen it like you mean it? One blood test can spot type one diabetes early? Tap now? Talk to a doctor or visit screened for type one.com For more info. Thank you so much for listening. I'll be back soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

---

Please support the sponsors

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate

#1242 Type Two Stories: More Jon

Episode 1242: Jon's Journey with Open Source Loop Systems

Jon shares his transformative journey with open source loop systems for diabetes management. This episode covers his transition from long-acting insulin to using a pump, the impact of continuous glucose monitoring, and the role of community support. Learn how advanced diabetes management techniques can revolutionize your daily routine and improve your quality of life​.

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.

+ Click for EPISODE TRANSCRIPT

---

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

Scott Benner 0:00
Hello friends and welcome to episode 1242 of the Juicebox Podcast.

Today I'll be speaking with a returning guest. This is John from Episode 688 type two stories, John. And John's here to give us an update on what's been going on. It's significant, you're gonna find this one crazy inspirational, I think, but let's make sure you heard 688 first because John's got quite a story. Please don't forget 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 for becoming bold with insulin. Maybe you'd like to save 30% off your entire cart at cozy earth.com I'm talking about the clothing, the sheets, the towels and everything else. Go there, fill up that cart type in the offer code juicebox at checkout and you will save 30% at cozy earth.com. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D. Drink ag one.com/juice box. If you're looking for community go check out my private Facebook group Juicebox Podcast type one diabetes, but John's over there. He's type two. There's type ones there's caregivers gestational moody doesn't matter to us. This episode of The Juicebox Podcast is sponsored by the ever sent CGM and implantable six month sensor is what you get with ever since. But you get so much more exceptional and consistent accuracy over six months, and distinct on body vibe alerts when you're high or low. On body vibe alerts. You don't even know what that means to you. Ever since cgm.com/juicebox, go find out. Today's episode of The Juicebox Podcast is sponsored by Omni pod and the Omni pod five, learn more and get started today at Omni pod.com/juicebox. Hi,

Jon 2:12
it's good to be recording with against God. I'm John kafele. and I have type two diabetes. I've had two type two diabetes for decades, three or more decades, I've been using insulin for almost 20 years. And I've been able to turn around and manage my type two diabetes and put it into remission at the age starting at the age of 60. I'm 63. As of last week, I told my story originally two years ago in Episode 688. And this is a an update on I guess what I'm doing and things I've learned. Thank you for the opportunity to share. Now

Scott Benner 2:51
it's my pleasure, and you have a lot to update us on. So that's why I was super excited to talk to you. And at some point, we're gonna get to the photo that you sent me to get me ready for this episode. That was a really like eye opening. I'll tell people more about it later. But yeah, please check John out on episode 688. And I don't know, I think these will stand alone pretty well. But if you really want to hear the whole story straight through, I think that would be the way to go. John, I'm gonna start off with something out of left field for you. What would you say if I told you that, when I released the type two Pro Tip series, I lost hundreds of listeners,

Jon 3:26
I would say that that's very unfortunate. And that a big goal I have had is to close the gap between type one and type two, by recognizing at least that type twos that use insulin are part of being bold with insulin, and that nobody else's struggles diminish your own. And that in commonality and a common cause we find strength. So

Scott Benner 3:56
I expected a little bit of blowback like a tiny bit. And I don't want you to get me wrong, I didn't lose like a large percentage of the audience or anything like that. But I lost about 400 listeners in the snap of a finger by putting up type two pro tip. And that was it. And it may be the whole series may have may have been like seven or eight episodes long. And I believe it was spread out over seven or eight weeks. So in a week where I put out five episodes, one of them was an addition to the type two Pro Tip series. And I even came at it by saying to people like look, you have type one diabetes, the show obviously is valuable for you. Maybe this information can be valuable for someone else, you know, with type two, and I thought the show would be a good way to get that information around because historically, I've watched a lot of people try to help people with type two diabetes and not go anywhere. And often. You see companies or organizations sometimes manufacturers, sometimes pharma companies, they try to kind of create a type to community and it just doesn't work over and over again. So I thought, oh backdoored, I'll come in through the type ones who already know this information is good. I'll go share it with my, you know, uncle who has type two. And I'm sure some people did that. And it's fantastic. And I actually know, personally of people that it's helped. But man, I woke up the next day, and I was like, oh, geez, it's not going to be easy to get those 400 people back, like, it's hard to get a person to listen to a podcast and to get 400 of them is a bit of a hump. But anyway, nevertheless, I persist. And here you are, again. I'm not. I'm not given up, I believe, like you that there's commonality between people who use insulin, have type two diabetes and people with type one.

Jon 5:40
Absolutely Good, good. We're stronger together.

Scott Benner 5:44
I don't see another way around it. But I'm kind of leading into it this way, so that you can maybe recap your first episode in a couple of minutes by telling us how you got to hear meaning knowing about the podcast?

Jon 5:56
Well, I've been taking insulin for over 17 years. And a big part of the story is that trying to form my thoughts here, long acting insulin for type two diabetics, people with type two diabetes can be an imprisonment of sorts, when you establish an increasing Basal rate through the use of something especially like to see but with a 42 hour half life, you and you don't modify your behaviors to lower that Basal rate, the amount of insulin that covers inappropriate eating, in the evening, eating a pizza needs to be balanced by the same amount of eating in the morning. And in the afternoon. So what you end up in is a trap you can't get out of and you can't try to modify your behaviors part of the day, you have to modify it 24 hours a day. Does that make sense? Yeah. No, it does. So I asked my GPS for over the years, I moved a lot. I've had different doctors and I would always ask the GP, the general practitioner, I would like to have Basal insulin so I can address mealtime, increases in my glucose and not be trapped in this higher increasing basil. I started at 40, I ended up at 140 and 140 units is a lot of insulin, or at least for me, you know, it's different for different people, but it was a lot of insulin, want to be able to titrate that downwards to establish a real Basal and then use Bolus insulin. And they would never do it. Finally, the last up I got, he replaced a doctor that moved away. And he is my current general practitioner still. And I said to him the same thing, hey, I want Bolus since they always told me to go exercise and lose weight. You told that to a guy who has 500 plus pounds until that guy, two guys 370 pounds. It doesn't really matter. There's something else that needs to be addressed. But this guy told me almost flippantly, the best thing that has ever been said. He said, Ah, you should go see an endocrinologist. And so a month later, I saw Liz and Elizabeth Driscoll over here at Sentara in Charlottesville. And I told her that I wanted to have Bolus insulin. And she said, Yeah, where's Is this your current pharmacy? I'll do that right away. I should also point out the before that in the beginning of our meeting, I told her that I was interviewing her for a job to be my medical assistant, but that I was in charge, and I would be making all the decisions. But the she had the control over the medicine locker as it were, we had to get along. And she was going to, you know, prescribe the right stuff for

Scott Benner 8:36
me. Do you think you knew in that moment? That? I mean, you just kind of you kind of offhandedly said that a guy over 500 pounds doesn't just need to be told to exercise as if like what you're really missing is just a brisk walk. And so like, did you know there were other factors at play in your health? At that moment?

Jon 8:55
Oh, absolutely. You know, the thing is, carbohydrate and sugar addiction is a thing. And it doesn't mean you don't you know, I imagine even if you're a heroin addict, you probably know that the last thing you need to be doing is heroin. And you probably are very intimately familiar with the failures in your life it causes. And clearly a guy is 540 pounds and cannot perform basic hygienic tasks. is aware of that, right? Yeah. Is that addressing what you're asking? It

Scott Benner 9:24
does? Yeah, I just didn't know if you were blissfully unaware and just cruising alone, or if you were aware, but unable to adjust, painfully aware,

Jon 9:34
but deeply addicted and not given access to the types of care that were necessary to break me out of that. Okay. And part of it is I have a lot of resentment over having been prescribed long acting insulin in and then ever increasing amounts, because that really became a prison that I couldn't get out of, and then not being willing to prescribe me Bolus insulin and allow me as soon as I got Bolus, insulin, everything turned around. Now, of course that required me to make use of that, right? You can't just give them the Bolus insulin it changes. But I have the tools at that point. Okay. Yeah. So Liz is happy to work with me. And then she said the thing that changed my life, she said, Have you ever thought about a pump? And I laughed, and I said, I'm here trying to get Bolus insulin for the first time. And you're asking me a person with type two diabetes, you know, how about a pump? And in my mind is the Darth Vader, you know, huffing and puffing through the mass with tubes and steam? And she says, Well, no, there's also a tubeless pumps. By the time I got home from that appointment, I went to the pharmacy, I live in the country. So it's like 40 minutes to get home. But I went to the pharmacy picked up my insulin, I'm there with it. And the insolate rep calls me and says that I was on Medicaid at the time. And he says that, you know, we just had a change in Medicaid in the state of Virginia, and I'm sending you out a whole starter kit if your game for it. And I was like, Well, absolutely. And then everything changed. And I started open source iOS loop in a few weeks of that. So

Scott Benner 11:01
how did you get to that so quickly? I've been professionally

Jon 11:04
involved in open source my entire career. And so I've always been aware of other open source projects and things like that. I've been aware of diabetes. And so I knew there was an artificial pancreas stuff out there. I see. And so I was like, Are you kidding me? I've got the Bolus insulin. I've got the iPhone. I've got the compilers and things. I have the skills. Now I have going straight to the head. Yeah, here I go. Yeah. I'm going straight to the head of the class, baby. Yeah. Nice.

Scott Benner 11:27
Okay, so, Jesus, you use just Basal insulin for 17 years,

Jon 11:33
for 14 years or so. Okay. I can't nail down exactly when I started. It was somewhere in between 2004 and 2007. Plain smoke.

Scott Benner 11:42
I'm sorry, God, no, I

Jon 11:44
was just gonna say I went to a doctor's appointment and had had an eight one C test and it was 14.5. And the doctor is like, how do you I have a very busy career and was responsible for managing operations infrastructures for large internet sites and things like this. And which is like a 24/7 very demanding job. He said, How do you do it? Um, I don't know. And so he prescribed me the insulin and I remember I went back to get started with it. And he showed me to inject your my jeans and to reuse needles from day one. How about that? There you go. So what were you going to even ask him?

Scott Benner 12:16
I know, don't be sorry. I just I want to make sure that everyone understands that idea of this person. So plainspoken Lee, you're eating poorly. And you have type two diabetes, your body cannot keep up with what you're taking in. So they give you this Basal insulin. But then what happens is your your blood sugar start to come down and then your eating goes up, and then you end up with more insulin. Is it just keep perpetuating back and forth like that? Or no. This episode of The Juicebox Podcast is sponsored by the ever since CGM. Ever since cgm.com/juicebox. The ever since CGM is the only long term CGM with six months of real time glucose readings giving you more convenience, confidence and flexibility. And you didn't hear me wrong. I didn't say 14 days. I said six months. So if you're tired of changing your CGM sensor every week, you're tired of it falling off or the adhesive not lasting as long as it showed or the sensor failing before the time is up. If you're tired of all that, you really owe it to yourself to try the ever since CGM. Ever since cgm.com/juicebox, I'm here to tell you that if the hassle of changing your sensors multiple times a month is just more than you want to deal with. If you're tired of things falling off and not sticking or sticking too much or having to carry around a whole bunch of extra supplies in case something does fall off. Then taking a few minutes to check out ever since cgm.com/juice box might be the right thing for you. When you use my link. You're supporting the production of the podcast and helping to keep it free and plentiful. Ever since cgm.com/juicebox. The Fear Of Missing Out is overwhelming sometimes, but the fear of missing out on Omni pod. We don't want you to have that. A lot of people in my private Facebook group talk about their love for Omni pod five. Have you ever seen those posts and thought I wish I could have that experience with an insulin pump too? If you answered yes, you might be experiencing FOMO fear of missing out on Omni pod symptoms may include but of course you're not limited to wishing you could wear outfits without pockets and fantasizing about jumping into swimming pools without disconnecting from your insulin pump first. Maybe you're dreaming about walking past that doorknob or a handle on your dresser without getting your tubing caught. If you're having those dreams, good news, you don't have to suffer from FOMO any longer. You can see what you're missing by trying Omni pod five for yourself at my link, Omni pod.com/juice box, get started today with the Omni pod five Omni pod.com/juice box throw away your FOMO?

Jon 15:12
That's a good question. You know, one element of it is the insulin causes insulin resistance. And the more insulin you take, and the more food you can input, it's a cycle, you know, one feeds, it's a feedback loop that increases the amount of insulin you take for the amount of resistance you have and the amount of food you're eating. And as you turn one of those up, the others turn up with

Scott Benner 15:34
it. Do you mean that as you add Basal insulin, your body becomes less and less effective, and therefore you need more more the manmade Basal?

Jon 15:43
Well, that's part of it. Of course, in my case, in case I think, many I have an extreme eating disorder. And that is the number one propellant in my diabetes, okay? There's, there's genetic predispositions. There's economic and other access to food and things that happen and so forth. There's a lot of things in my case, it was a extreme district eating disorder related to you know, childhood trauma, blah, blah, blah. And it literally fed on itself. So the prison of long acting insulin for person and my condition is that it gives you a license to eat a large pizza for dinner. And to follow it up with big chocolaty treats and things like this. And what that eating is doing is it's creating dopamine releases that our guests just straight up like taking drugs, and it is taking a drug. It's the different method, right? And so you're addicted to that high, you're addicted to that. And so, you know, you hear about like, maybe you don't hear about it, but the idea is a person does is on heroin, and all of a sudden, everything's just hunky dory. Everything's absolutely wonderful in the world. Even if you're in an alley, you know, on a piss soaked mattress by a dumpster, everything becomes wonderful. And that's what food does to a person with my pathology. Gotcha. All right. Well, that was my history. And so if you eat that pizza and everything the next morning, you still have that high Basal rate.

Scott Benner 17:14
Yeah. And so almost functionally, what you think is like, so was there actually a time where your blood sugar was one of the reasons you finally could stop eating at the end of the day? Great. Like, I can't keep doing this. But then all of a sudden, the the insulin felt like a crutch. Or is that not right?

Jon 17:29
Insulin was always an longterm act long acting insulin was a enabler and a in trapper, does that?

Scott Benner 17:37
I think so. No, I think I understand I just, I just wanted you to really spell it out for me. So once you get a pump, and you get to an algorithm, and now you're covering your meals with Bolus insulin, how is that different from just basil?

Jon 17:52
I'll tell you what it was. And it was what I envisioned it would be all along, I remember, I'm an engineer, and so forth. So I have a very certain place on the spectrum with my mind. Once I had that tools in hand, I could see how much the foods I were eating, were directly impacting my glucose performance. So throughout my life, you know, and if you're not too, I can solve any problem. But if you're not driven to solve it, you're glib about it, right? So at one point, I convinced myself that sugar wasn't the problem. It was fat in foods and all these different things, right. And once I started taking Bolus insulin, and really paying attention to it as I do, I saw the effect of every single thing I put in my body. And I quickly realized that for me, grains were not helpful. Okay. And they're not. So I had a budget, right, I had a performance profile, I had a thing I was trying to do. And I was trying to reduce my overall use of insulin from the beginning. And I was trying to achieve at that point, I wasn't trying to achieve normoglycemic values, but I was trying to achieve achieve non life threatening values. Gotcha. And it happened very quickly, though. And I started realizing the different kinds of foods and the ways of eating that were harming me. And I just thought about, I was able to kick the drug, almost cold turkey, I remember it now. Like I thought, you know, I'll just have a sandwich in the middle of the day, just a nice sandwich with a lot of vegetables on it and some meat and just two pieces of bread that I'll dose for. And then what happened was, I realized that even though I could dose for those two pieces of bread, that they had a significant carbohydrate impact and long tail effect that I had to manage that I had to use more insulin to deal with, that I had to pay more attention to. And then it became evident to me that I could just have that vegetables with some meat on top of it and not have the other impact. And it just made more sense for me. Okay.

Scott Benner 19:49
It's interesting that you had that problem first. So I mean, would you consider this disorder lifelong?

Jon 19:54
It pretty much manifested by eight years of age. Okay, well, that yeah, pretty much lifelong.

Scott Benner 19:59
So My point is it's interesting that getting the pump, and I guess I'm assuming a glucose monitor as well. And then like, yes. Is that right?

Jon 20:09
I've been using Dexcom for a little over seven years. Yeah. So I've been using Dexcom for four years prior to being finally given Bolus insulin. It was just a waste. It was just a thing that would alarm all the time. I've gotten phone calls with friends. And they'd be like, Oh, that's your alarm. And I'd be like, Oh, whatever.

Scott Benner 20:27
So it's interesting, though, isn't it that you have the information? It didn't get you to change but then suddenly, once you had another tool, you were like, Oh, I eat the bread. My blood sugar goes up. I'm gonna stop eating the bread. Let's go. I'm on this journey. Do you don't know what pushed you in like over like, it sounds like you think it's the pump, but I don't understand why. No,

Jon 20:47
no, no one. One is observational. The Dexcom is observational. The insulin is interventional. Okay,

Scott Benner 20:54
so you felt more powerful with the the Yes, Bolus insulin, okay.

Jon 21:00
Yes. And it was also a way to get off of the long acting. Gotcha. All right, I understand. And the funny thing is, I didn't titrate the lung acting because I immediately recognized that a pump with its micro Bolus ng is Basal and Bolus. So okay, that was pretty cool. Right there, I was able to holistically I didn't have to titrate it was like, MBI. Right, right. I didn't have to work those against each other, or with each other.

Scott Benner 21:25
You see the impacts, you keep you stay, it's amazing, you're able to just stay on that new path, which is laudable, it's fantastic. But you stay on that new path. And we are in there, do you find the podcast immediately? Okay.

Jon 21:39
Like, immediately, you know, you got search tools, you got Facebook, you can search there, you can search Google, you can do stuff. So you start saying like, who knows, you know, what are the outlets? Where do you learn about how to use insulin? Actually, literally, my thing was, I've got this stuff, how do I learn how to use it. And I'm very antagonistic to anybody that has anything to sell. It's just raises my spidey sense in a big way. And so when people have a miracle diet, or they want to sell you cinnamon, or they want to tell you how you need to do it, it puts me off because as you can tell, I'm pretty much think I know everything already. And I'm very, you know, engaged. And I want to form my own opinions and stuff. And I don't want to just buy a cure. And so social media is a great place. I've been on social media all my life, since the Usenet and things back in the whale days, I just wanted to find a place where I could talk to people that were doing the same things. And when you look for type two groups, on Facebook, I'm a middleman. So I don't Twitter or ticker totter talker much right? Um, looking on Facebook for groups, and every type two group I found was part of a company and had a thing that they wanted to do with you at all. And then your group was about being bold with insulin. And that made a lot of sense to me. And I reached out to you very early. And I said, Help me, what the hell do I do with this? And you know, you gave me some insight and suggested I read the group and do more there. And I did. And then before long, I actually reached out to you. And I said, I wanted to start a type two group. And you suggested that that would be a great thing. But let me know that you were also working on providing type two participation in the group and support in the group. And, and I was like, You know what, I'm just gonna wait and see where that goes. So I'm honored to have been an IRL monitor have been an early guest, and I'm honored to be part of the group. And it's really cool to be here again, with you, Scott,

Scott Benner 23:32
I appreciate that. You're also you're one of the I would say one of the key reasons that the group attracts type twos at this point, too, because you've been so open and clear about what you've been through. So I'd like to do that here, too. I'd like to talk a little bit about what happens. I think maybe we should jump into like the weight loss journey. Like how long does that go on for like, I'm right to say that you're basically a pretty low carb guy, right. And that's been since you found the pumping. That's

Jon 24:03
the funny thing. It's, you know, it's not overnight, right? Okay. And so even before getting the insulin, I was trying to modify my behaviors. And in a year or two before I finally got a hold of that the Bolus insulin, I was actually deeply hypo about a half a dozen times. The rescue squad had to come out four times and they transported me to the hospital twice. And that was because I was taking a lot of insulin and trying to eat a lot less food. And there's there's the prison you see, I'm saying, and so I've been making moves in the right direction all my life. When I was 3330 years ago, I lost 200 pounds, and I reduced from 540 to about 343 50. And then I vacillated between that range 373 50 down to 280, like five times in my life. And so the fact was, I knew how to moderate my mind Hey viewers, but when I got to 270, I couldn't lose any more weight. And so then you just kind of give up, right. And that was a thing that happened. But what I wanted to address is when I got the ball, since when it did turn around overnight, it was a sequence of continuing refinements and adapt adaptations. Okay. And so I got my a one C down from a nine, four with like, no time and range to a six with, you know, 80%, and range. And I've been under 5% for almost two years. Wow. And my standard deviation is under 15. And my time and range, my personal range that I track a 70 to 120. And I achieve mid 90s presets all the time, pretty much. The thing that screws that up is Dexcom, mankind doesn't have a way to measure glucose, whether it's a one C or your finger stick or whatever, it's always an approximation. I'm fond of saying if I became a billionaire, I would focus on not a cure for anything, but how to measure diagnostics, accurate diagnostics, right? Because more so than a cure for diabetes, or a cure for any other thing is effective treatment. That's the thing that we can do now. So that's a passion of mine. measurements include a one C and your data from your Dexcom, you have to take it all together as a bigger picture. You know, I'm saying I achieve those things. But it took a long time. It was quick. But I mean, it wasn't overnight, right? It was a continual process of refinement. And recently, in the last two months or a little bit more by diet bestie and I have have eliminated snacking. And that has had a significant improvement. So even when I was in these numbers, removing the snacking is caused an increase in weight loss and a reduction in my waist size.

Scott Benner 26:45
Well, how many calories do you think you take in a day? Ha.

Jon 26:49
You know, when I started this, I determined only to count carbs, and measure glucose and I felt everything else would fall into place. And that was largely true, you get to a point of diminishing returns on one angle of attack. And you have to add others. Yeah. So now I'm looking at actually, there's other elements of what's going on is I found that my beta cell function was at the level of a person with type one diabetes, it was insufficient to support life. At this stage of the game, I was able to turn it around. And now my latest C peptide shows me at the at the low end of normal. And so you know, they say do something about your type two diabetes now before it's too late. And what I'll tell you is it's never too late. How

Scott Benner 27:36
much insulin do you use today? Like your total daily dose? Versus the first day you put on that pump? Do you like just vaguely you don't need to be exact. But what do you think the difference is?

Jon 27:48
I'll tell you that the day before I put on that pump, I was running 140 units, which receiver, I can't remember where it was immediately, but I got it down to half of that pretty darn quickly, very quickly. And then getting it down the next half likes from 72. Right now my my total daily usage of insulin Bolus and basil combined, is running about 35 units a day. And that's been the case for a few months.

Scott Benner 28:16
Yeah, that's a quarter of a quarter of the amount of that that Basal insulin from beginning of your story. And the increased

Jon 28:23
the larger part of that insulin right when it was at the higher end resulted in things like a 9.4 a one C with no time and rage. And all of that to the to the numbers I have. So it's not even, you can't even do the simple math of one quarter of the insulin right? You're talking about orders of magnitude results. Yeah,

Scott Benner 28:43
I mean, being in the situation you were in and just giving you Basal insulin is really it's almost cruel, honestly, because it's yes, yeah, give me it's slowing down your demise, but it's not really doing anything to stop it. It's just, it's now just crawling forward a little slower than it did the day before.

Jon 28:58
I strongly believe that when a person is with type two diabetes is introduced insulin, it should be done in a very focused manner with reviews. And not just as like go take this and go away and die slowly. It should be here this is now let's do behavioral modifications and other things so that you can reduce the amount of insulin we have to give you right now and also people with type two diabetes who are on insulin should be introduced Bolus insulin as soon as possible.

Scott Benner 29:29
Okay. Do you have any idea what shifted inside of you to help with the addiction to the sugar?

Jon 29:35
I think that my ability to escape that happened much earlier than my access to the tools to enable

Scott Benner 29:42
it. Oh, okay. Oh, so it's not as it's not as instantaneous as the story makes it seemed you had made the decision but didn't know how to do it.

Jon 29:51
Well, that's what I tried to keep there with like, the year before getting it having six extreme hypose Yeah, and And and all that experience. I mean, that was me trying to change my behaviors, but getting slapped into the hypo lows by the insulin

Scott Benner 30:07
I say, Okay, can you put a weight on that? That? Let's go to when you I don't know you found the podcast like what do you weigh that around that time? 350 pounds 350. So you had gotten off 200 pounds on your own? Yeah. For like 30 years for 30 years. So you were up to five something? You lost 200 You maintain that for 30 years at this like 350 ish range?

Jon 30:31
No, actually I went from I went from 350 to 280. Okay, five times. Oh,

Scott Benner 30:36
so you would bounce in over those 30 years, you'd bounce from 350 to 280?

Jon 30:40
Yeah, like about five times four or five times? How did you get from 350 to 280. Same way I got from 540 to 350 calorie deficit for the most part, but also swimming. To get the first 200 pounds. I went and swam a mile a day three times a week at the gym here at University of Virginia. And that was a big part of it. Swimming was my thing. When I was a kid, I had some training.

Scott Benner 31:06
John, can I take a detour for a second? Yes, please. What's it like jumping into a public pool when you're 550 pounds?

Jon 31:14
That's a very good question. A little bit more background about myself. And I touched on this maybe even more depth in my first episode. I was raised institutionalized, I'm diagnosed autistic, and so forth and things. And so it was a pretty weird childhood. And when I was about 17, and living on my own on the road hitchhiking was when I just realized that I'll take my shirt off, if I want to take my shirt off, and I was, you know, over 350 pounds at that point. And I don't care what other people mock me or say about me anymore, because it's just about them. And you've probably heard the concept of flying your freak flag. Hi.

Scott Benner 31:54
I'm sorry, that was your vibe.

Jon 31:56
That was my vibe is you know what? I'm done apologizing for bap. Now, I didn't give myself that break internally as much. But I just couldn't live. I couldn't maintain hiding behind the couch and being afraid of the other

Scott Benner 32:09
kids like when I was younger, but still it made you feel a certain way internally. It was liberating,

Jon 32:15
if that's what you mean. Yeah. Or you mean the shame or something? Yeah, I had to get over that. So you know what, I got the pool I swam. And I'll tell you a funny thing. I was involved in a faculty council that met with the the administrative vice president of the university who is really the BIOS Reading University. And a guy that says, Hey, I see you in the pool all the time. And it's really impressive what you do. And that kind of feedback is rewarding, right? And I'll tell you what, man, I swim my first lap to my last lap at the same speeds going that with that much weight. Wow, it was rewarding. And you know what, when I get to share my successes in the group, it's very rewarding that people exhort me and congratulate me. But more so you know, it's about the lurkers. Right. And so I liked the idea that may be in the group, I can carry a bit of a message for the 40,000 that aren't posting every day. Yeah. And that I was making see that. Go ahead. No, I

Scott Benner 33:11
was gonna tell you that. I do like a weight loss diary, since I started using a GLP last year. And it's not talked about online, nobody brings it up. Like I don't hear from people like, Oh, I'm liking it or anything, but I get a lot of private notes about it. Like this made me feel good. Or I connected with what you said here, or you motivated me to do this or that like, but it's not online, like, whereas with the podcasts when it's about diabetes, you'll get like, people will be out front about it. They're just like, Oh, I heard this episode was really valuable blob above like, they're, they're not afraid to do that. And then like they'll jump on, but no one's mentioned it publicly. But it gets a lot of like private notes. I just think it's one of those things that generally speaking, I don't know that everybody's looking to talk about in public. It's just, it's just interesting. When you put out content the way I do, and you get to watch how people interact with it. It's a real learning experience, to see how people think and feel and what they what they think is important versus what they'll say out loud, sometimes. Just very interesting. I'm sorry, I cut you off. I didn't mean to. No, you

Jon 34:18
did not at all. And that's that's an interesting dynamic that I'm impressed by your ability to deal with the wide variety of people that come to your door, our char tribe. You're very inviting and open to people you tolerate quite a bit. But you work really hard to keep the conversation positive. And so you know what, there's people that are actively participating and everybody that's actively participating, y'all are addressing and speaking to a much larger audience.

Scott Benner 34:48
Yeah, yeah, you don't, you'll never know it. Like, I'll even never know to the extent that it happens, but I get enough feedback to realize Sit does like just to hear from somebody who said, Hey, I've lost 40 pounds since you started your weight loss journey, and I started mine because of you. And I think I don't know this person's name. I've never heard them before. I don't recognize them. I go to my group, I they're not in the group. And I'm like, wow, it's fascinating. Like I just said something positive, maybe hopeful. And I just put it out in the world. And then that person lost 40 pounds. It's crazy, isn't it? It's a message in a bottle. Yeah, man, no kidding gets a really nice way to think of it. Okay, so you mess around between 350 and 280, for 30 years or so. Swimming, not swimming back and forth. I guess the battle between the food and the exercise goes back and forth. I would also imagine that getting to 250 is great. But you're still standing there. 250 go, Oh, my God, I still have weight to lose. Like this is like is my whole goddamn life. Right, like, and so where does it really just start? Like, downhill skiing for you? Like, where do you just like, Where does it start? Where you're like, I'm on this path, and I almost can't get off it now to where you are right now. Tell people what you weigh. Right now. I

Jon 36:06
weighed this morning, I weighed 250.9 pounds on the scale. I've been right at 250 for a couple of weeks now. And

Scott Benner 36:13
this for you a weight is you think this is a good weight for you. Do you think there's more? Do you think you're too thin? What's your opinion of of your body right now?

Jon 36:22
And we'll talk about that surgery and bone. I think yeah, I weigh less now than I did when I was 15 years old. Wow. About that. That's my goal. I have stage one obesity right now. At my height, I was stage six plus, and I had a body mass index about 66. Okay. And now it's about 33. You know, it's imperfect math, right? Unless you do that thing where you get in a sling and go into a saltwater bath. And they weigh you and all that. But the math says, Yeah, so the math says I'm about 33, which puts me in stage one obesity. And my goal is to lose another 30 pounds and become overweight. You like the IRA, I already have that. My goal is to be overweight

Scott Benner 37:09
chested. I've had that goal. So how tall are you just for context for people?

Jon 37:13
I'm six foot one, okay. Or as I like to say, I'm six foot one and a half.

Scott Benner 37:18
I listen, if I was six foot one and a half, I'd added it to Okay.

Jon 37:23
I mean, it affects the BMI calculation and makes it a bit easier.

Scott Benner 37:28
Didn't get shorter when you lost weight. I've seen people lose show shoe sizes.

Jon 37:33
I would think you'd get taller when you lose weight because of less vertical compression.

Scott Benner 37:38
Oh, John, you're saying something there? I was thinking about literally fat under your feet. Well,

Jon 37:43
that's interesting. I'll tell you a thing to maybe interesting is I ended up essentially crippling myself and I use a shower in a chair in the shower, I use a chair in the kitchen, I use electric cars at the store. But I can swim a mile every day before surgery for two months before surgery. I'll swim a mile a day, six days a week. And how do you do that? Right? Well, it's the zero G thing. It's taking the compression off of the spine. And so I'm trying to make that better. I also recently had a comment, I'm glad to be able to get this in here. I had a conversation with my GP was only about two or three weeks ago. And I said we're we need to reevaluate our relationship. And we need to have a relationship where you understand that you are working for me and that I'm in charge. So I had that same conversation with him. And he was happy to do it based on I guess, you know, the results. Yeah. And I said, the first thing I want to do is I want to remove statins, statin from my portfolio. And I said I'd like your advice on how to titrate that how to reduce that dosage. And he said, You know what, let's just take it away completely. And we'll see what's up in two months. And then if we want to, we'll titrate upwards from the minimum dosage and I was like, Yeah, we're, we're, we're we're doing it. So the the reduction of the statins may help with muscular issues.

Scott Benner 38:58
I was gonna say tell people why so we will but let's go backwards a little bit. You've crippled yourself How could go through that?

Jon 39:05
Where you can't wait 540 pounds. And you have what passes for inactive life, right work and all this kind of stuff and it not have issues. A long, long time ago, I had, I think it was an MRI or something. And they said I had compression fractures in the spine. And like, kind of, of course, and so you can't weigh that much. Now. I think we're getting close to the surgery now because after losing all that weight I was carrying around a huge apron of flesh. And imagine if you wore a sack of potatoes around your belly with a belt on your back. What that would do to you after decades

Scott Benner 39:46
pulls on you. Yeah, but John, listen, I've only lost 50 pounds. Okay? And I say only because obviously you're you're in a different league. But what has changed for me? My knees don't hurt. I don't have plantar fasciitis anymore. My back's not always stiff. I feel better generally speaking, like I feel healthier, more awake, more alive. Like all that stuff like, I sleep better, I have significantly less acid reflux almost none, just, you know, all have these different things that have changed with my weight that I swear to you, if you would have asked me prior to losing 50 pounds, Hey, Scott is your plantar fasciitis from your weight, I would have said No, probably not. But I mean, now that you look at it, like, in hindsight, you're like, well, obviously it was, you don't need me like, Why did my knees hurt? Or my knee hurt? Because you know, I have little cartilage break down on my knee like, yeah, okay, it must be genetic or something. Or it's because I had 50 pounds. I don't know how to explain that I'm a pretty bright person. And that I didn't know my knee hurt because I was fat. I know that sounds insane. But I really I didn't know that. I didn't know that I was tired because of that. I didn't understand any of that. And for context, I use the GLP to lose weight. So I haven't significantly changed the things I'm eating. I honestly didn't, I wasn't a particularly poor eater. My body just didn't deal with food. Well, my digestion was wrong, I wasn't holding nutrients correctly. Like all this other stuff was happening, this GLP has changed all of that for me. On my ferritin I just had my bloodwork done. And then I forget, it's like I forget what is 166 or 188. Like, it's it doesn't matter. It's up in that range. I haven't had an infusion in like a year and a half before that, if I didn't have an iron infusion, every six months, my heart would be down to 10. And I was shutting off. My body wasn't even holding my nutrients. And I don't even know how to explain why that is exactly yet. Obviously GLP slows down your digestion, is it just leaving the food in my stomach longer so I can actually absorb the nutrients I'm eating? I don't know, do I have a GLP deficiency? I don't know. But what I do know is my knee doesn't hurt, my back doesn't hurt, my feet don't hurt. I'm more alive and awake. And I swear to God, if you would have asked me two years ago, what that was from, I wouldn't have said my weight. So I don't even know how to explain that.

Jon 42:16
Healthy lifestyle is the fundament for a better life. And whatever disease you have, whether it's curable or you know, like in my case, reversible, in type one, there is no fundamental cure, but there's treatment, eat well shake your bones as much as you can. And things are going to be better.

Scott Benner 42:36
Yeah, I just think that's true. I mean, not that, again, if you would have asked me that. I would have said that. I just didn't think it applied to me for some reason. Right? Yeah. Right. Yeah. So okay, so I'm sorry. So you've got we've got this weight off you now. And you're carrying around a lot of extra skin right?

Jon 42:55
Here, you saw the picture is pretty profound. And yeah, if you look at the size of the hands and some of the pictures, and then transfer that to the picture of the final removal, you can get an idea of the scale there.

Scott Benner 43:09
I mean, you sent me a photo of yourself. It looks like it's taken basically, like from your neck down your splayed, basically, right. And the truth is, is that you have to really focus for a minute to realize it's a person. Like it really is that like, like just, I don't know what the word is altered. And look, it

Jon 43:30
looks like a cattle abattoir kind of thing. Right? It looks like they're cutting cattle open to make meat of it or something. In my opinion. Listen,

Scott Benner 43:39
if you would have told me it was a giant tuna on a boat, and they were getting ready to cut it up. I would have believed that for half a second. Yeah. I mean, how do they measure what they took off it? Was it inches or weight? Or how do they relay it to you? That's

Jon 43:51
a very good question. Because when they take that the skin off, it has the adipose tissue attached to it, you don't lose fat cells. And typically you don't increase the amount of fat cells you have, except for when you get into extreme obesity, you actually do create new fat. So what you do is you to stem them, you fill them, right, they get larger and larger. So when you've lost the weight, there, it's still there. And people who maybe have lost the weight weight as a result of rapid weight loss due to like bariatric surgery or whatever. And then they say you know have to keep it off for 18 months or something. And by the time they take that off there might even have some adjunct liposuction to go with it right to bring everything together. In my case, the doctor noticed that the bulk of the weight loss and also this the other thing, I was down to 270 when I had the surgery, okay, were 275

Scott Benner 44:46
Oh God, John 25 pounds without a skin.

Jon 44:48
So no, no, no, the actual weight of the skin was 13 pounds. But the doctor said Had this been like an 18 month weight loss. It would have weighed considerably more Oh, because of the the condition of the fat cell. Yeah. So what I had was a very emaciated layer of fat. And that ended up causing complications with fluid with drainage later. But on the other hand, in terms of healing, I healed like a Star Trek movie. You know, I mean, like when they pass the hand over the wound, the alien does and it heals right away. Yeah, I healed amazingly fast. And the doctor pointed out and trained the staff on this as well, that drainage is just a standard component of the healing and it's not a complication. Mine took a long time. But everything else healed up so amazingly well. And I would like to say at this point, put this out, too. We as Luke during my operations, the iOS loop app was used during my operation to maintain my blood glucose levels. How

Scott Benner 45:47
long was the operation? Five

Jon 45:49
hours plus,

Scott Benner 45:51
wow. And was there someone there managing your diabetes for you when you're out? Are you just let the loop run it?

Jon 45:56
Well, so you know, there's two people in the surgery that are the the prime operators, one guy's got is keeping you alive, and the other guys is doing the surgery. So the anesthesiologist is key. And I met my anesthesiologist before the surgery. And we had meetings, and he said he was very interested in using loop. And so we use loop during my surgery. So he had my phone on his station, and did not have D five, set up dextrose 5%. Right. He did not have a dextrose solution setup for me, gets ready to do so it needed. He knew my control. And he knew what I was doing. And we we had done a zoom session where I showed him how loop worked. We ran it through my surgery. And by gum, it was just amazing. And, you know, I believe I know it opens the door for other people, because it was really, it's not likely that you're going to get a surgical team to do that.

Scott Benner 46:52
Arden's had short procedures where they've let it run. She's also had procedures where they told me to shut it off, and I pretended to shut it off and left it off.

Jon 47:03
Yeah, but this was like a full on five hours.

Scott Benner 47:06
This was a four to five hours of eight hours of recovery where you're not awake afterwards. No eight hours front end

Jon 47:13
of unconsciousness, right? Because about three hours and I mean, right, tacked on to either end. And you know, I get that out of my Nightscout to

Scott Benner 47:21
I can see Yeah, listen to I mean, the truth is, it's a good example of good settings, and how you can fast with diabetes to if you have if your settings are good, and you're on a good algorithm like that. So Well,

Jon 47:32
having said that, because of my, my diabetes is my diabetes, and what I do is what I do, but I eat once a day, one time in a day later than I should, because I work and I get involved in things. So I eat about 7pm would

Scott Benner 47:46
walk me through your day that you wake up. You don't eat you drink anything. Water. Okay.

Jon 47:51
Oh, coffee, coffee. I love coffee. But I'll tell you about coffee is I don't allow myself to have coffee every day. Because chemical dependency, I

Scott Benner 47:59
say you don't want to get hooked on it. Yeah, I don't drink coffee. But um, when I see some people, they go after it like it's a little too important. You don't I mean,

Jon 48:09
it has a physiological effect. And I need to be I need to be in control of my physiology.

Scott Benner 48:15
You think it would be a gateway to sugar and other things?

Jon 48:19
At this point? No, because I'm hell bent. But I do think it can be something that everything is kind of in moderation. And I think that too much of anything is not good. And, and caffeine is a drug. And I don't want to stimulate those portions of my brain, even if it's not going to get me into sugar. I say, I don't want to be a junkie.

Scott Benner 48:39
No, I hear what you're saying. Okay, so I'd like to know a little more about the surgery. So where does most of the I mean, are they taking it from limbs from midsection, everywhere?

Jon 48:52
I have a 30 inch suture going horizontally across my body just above the pubis just above the mons, right, yeah, and it goes 30 inches from each side, each side. I'm 5046 inches now. So you can imagine. Oh my gosh, I never even thought about this though right now. But 16 inches of me is not hitch or is the hinge right. The other is this 30 inch scar that goes all the way around. And so what they do is they cut that just below my moves. I had to get that choke and they cut me just you know, somewheres below up high north, and then they cut me right above the mons maybe a little bit deep there because he pulled it up a bit, which was lovely. Yeah. And my doc, every surgeon has a different philosophy and so forth. And some people want to be what they call snatched, so they have a tight bod. But I'm not in the tight BOD kind of category. He doesn't want to pull you too tight. So you have to walk over and a hunch for a long time and all this. So anyways, they cut you apply, they cut you down low, and they remove the section tapering towards the edges, right? It tapers down, and then they saw you back up to top into the bottom end. Wow. Yeah, it's pretty profound. Those pitchers you don't understand until you see the pitcher. Now there's

Scott Benner 50:03
no way to understand that actually, was it painful the recovery? Not at

Jon 50:07
all. And it's, again, it's different for everybody else. I have a high pain threshold, I have chronic pain. And it just it for me, I didn't take any painkillers at all. Okay,

Scott Benner 50:15
I do wonder if not to your degree, but I do wonder if this is a thing I'll need eventually. Or if I'll just because it's funny, I don't think about it. Like, I have to say, visually, I don't care. I'm so much happier being smaller that this bit that's around my midsection. Still, they're still fat there. I'm not done yet. But if it was just skin, I honestly don't know if I would care. I'm so happy, just feeling better.

Jon 50:46
And that's a lot of the way I felt about it. But it becomes physically debilitating. It is hygienic ly and sexually limiting. It is caused me to be effectively, you know, crippled, yeah. Now I'm going to turn that around to I said somebody at the store the other day, we're talking, I said, I decided to swallow my pride and take the ride. So I'm in the little electric cart. And it's funny, I used to be in that little electric cart and be a big guy in the electric cart. And now I'm in our society, a normal size guy, as it were, and I'm in the car. And you know, I want to get up and start walking. But I know that halfway through my shopping or a quarter of the way through, I will not be able to continue to be exhaust carry on. So I have to this is spoons theory of disability, you have so many spoons to spend in a day, right? And I don't want to spend all of my ability, starting to shop and not being able to finish. And then before I took the cart, I would do that I would get stuff real quick, go to the checkout, sit there leaning against the candy now trying to support my weight and my pain and sit in the car for 10 minutes before I could drive home. Yeah, so I decided at one point to give myself that break. But now I'm kind of at the point where I want to go there for a small shopping and do it without sitting down in the car. But then I don't want people to say oh, you've been faking it. Or like

Scott Benner 52:00
John's complicated. I got a quick little procedure on my big toe ones. And the next day, Kelly's like, I'm gonna go to the restroom. Like, I'm totally coming with you. And she goes, what you can't walk. I'm like, I know, I want to drive the car rolled around that place like a king on that card. I was like it was amazing. So what do you think? I mean, you're obviously on a path to get your like, what is it? You're trying to get back muscle tone, like, what do you think you're lacking right now?

Jon 52:26
Yes, the first thing I'm trying to do is get some core strength back. And when I was swimming before the surgery that was really working out well. And I wanted to add to that, a home gym component of barbells. And working on some weight training, not necessarily a complete, we would call the long, not the barbells. But the full weight thing. Maybe not that to start but just the barbells and do a bunch of different exercises to start bringing the bat in which would continue to increase the metabolic rate, it would do muscular things that are important for me and all that. I'll tell you a problem is the work I do, I don't get paid very much money at all. And I'm kind of just barely making it. And my car went completely but up. And so I don't have a car and I can't get to the pool. And I am desperately trying to find a used car. I've got a limited amount of money that I can spend on the used car market is insane. Yeah. And I live rural. So by the time I find something that's a candidate, I have to drive a whole day there and back to look at it and there's undisclosed damage. So right now the biggest thing of my life is getting mobile again, and getting back in the pool right away. And thing is, can I start doing some weight or resistance band training right now? Yes, I can. And I need to not use the swimming as an excuse for that. But the reality is that time in the pool with zero G means everything to me. Big

Scott Benner 53:45
deal. Yeah. Yeah. I wonder if your doctor couldn't get a transport for you to the pool under insurance? Well, the

Jon 53:55
problem with that is I have marketplace insurance. I'm thrilled that they cover my diabetic supplies, right? They're not going to go too far into that. The other thing is timing of it. So my work? Yeah, I guess you're right. I trained people how to use Lou, they schedule sessions with me, my calendars available, they schedule sessions with me. And I find that people are on my calendar, right that they just show up. And I have to schedule around that. I'm going to swim the mile that I do, it takes me an hour, but it takes the whole round trip at least 90 minutes. And I've got to fit that in my day. And I've got to be so you can't like oh, the transport is late today. Or, you know, I have to be back at my office home office to do the next session. And so that's a limiter and you know, again, there's all kinds of rationalizations and you have to not let this stop you or slow you down. So you know, I'm once again convicted that I need to get out some resistance bands and work with that. I do have a little treadmill under the desk thing that I give some work with. Yeah, I'm sorry. My answer is I can I can do more regardless and I need to Okay,

Scott Benner 55:00
well, I mean, it's tough. Like if the walking, I mean it, the zero gravity of the water is what's really is what's making it possible for you. Yeah, yeah. Unfortunate

Jon 55:10
it really is. Now, I'm hoping that that plus the weight training can get me core strength, it'll take some stress off of the off of the back. But I also believe that the Statins have been causing me some muscle issues that may be playing into a lot as well. I was

Scott Benner 55:25
going to ask how long of being off of them do you think until you feel value

Jon 55:30
from that? I'm very much enamored of the scientific method and not allowing correlation to be mistaken for causation and things like this. So I really try to get long data on things I can tell you that subjectively it feels like I'm feeling better, I'm sleeping, I don't have cramps. So I can't sleep more, we're more about two or three hours, and I have to get up and walk it off, okay. And I've been able to sleep I've been able to sleep five or six hours, okay, and I'm also ingesting salts. I'm increasing my specific salt intakes, not just salt on my food, but I'm using a salt supplement, I often get very bad debilitating cramps in my legs at night. And those are dramatically reduced as well. So give me another six months. And I'll tell you, you know, I'm sad. But right now, I think it's, it's I don't think it's any worse. I have to have a cholesterol test in another month or two, and just get a handle on what's happening there. I think it's better Good.

Scott Benner 56:28
I'm glad. Just thinking about your predicament. And it's hard to like, I'm trying to look for other ideas that would be valuable for you. But I don't know what they're none are popped into mind. You know?

Jon 56:39
Yeah, basically, I just need to find the miracle used car that's going to work out for me for you know, the $6,000 I've got Yeah, and I just need to run about to do groceries and stuff. And as soon as I do that, I'm going to be a regular fixture at the pool again. And that's going to be a really cool thing.

Scott Benner 56:54
I don't I don't want to get into your I'm not trying to get your finances but okay. All right. Well, I hope hopefully, this is something you can figure out. So

Jon 57:00
I have friends to talk about a GoFundMe, but I'm the guy who contributes to go fund this. So I know this

Scott Benner 57:07
is gonna sound ridiculous, but you said that when he cut you, you know, at your waist. And he cinched it up like you, you were like, which was lovely. And I was like is that my penis looks bigger joke. I couldn't tell if that's what you were doing.

Jon 57:18
No, you know what? It's funny that it's a joke. And I'll be you know what, I discovered that I have one. It's crazy. Like I mentioned earlier, hygienic, and sexual function is vastly improved, you know, when I not to be graphic or anything, but when I put my hand around my pelvis, I feel a bone. I can do the Michael Jackson thing. You know, I'm

Scott Benner 57:41
talking about you. And you and I can prior to that No, right? Like, Oh, hell no. Yeah,

Jon 57:47
let me let me let you I might turn this into an after dark episode. I hope not. But in order to use a public restroom to urinate, I would have to go into a stall because I'd have to drop my trousers to my waist. Lift up my belly and do my business. And you know, what's a wonder? This sounds so silly. I can use my fly now.

Scott Benner 58:09
I tell you that must have been exciting. I'm being serious. So yeah,

Jon 58:13
I am too. Yeah. And they sell hygenic aged we have all to take care of when you defecate

Scott Benner 58:19
when you're that large. I've seen the towel on the stick thing. Yeah,

Jon 58:23
yeah. Yeah, I used to have to take a shower. I'm, it's all of a sudden become too TMI. But it gives depth to the thing.

Scott Benner 58:31
No, of course. So for clarity for people. You at that weight, bowel movement. You had to move to the shower afterwards, because there was no reaching to what you needed to reach.

Jon 58:40
Yeah, and I wasn't gonna get a towel on a stick. Yeah.

Scott Benner 58:43
And that's something man. Oh my gosh, well, your life has changed. 540

Jon 58:47
pounds is profound. That's my 600 pound life. Yeah.

Scott Benner 58:51
But your life has changed so significantly.

Jon 58:55
Yeah. Can you imagine I weighed 250 pounds. i After the surgery, I got 50 inch pants. I took the four inch before that after recovery from the surgery removal of the drains. I was wearing 50 inch pants. And that was like, almost three months after the surgery is how long it took the drains to come out. Right. And I went I bought from Amazon 5250 and 48 and you know, they have to try before you buy and I kept the 50s and it was just this week that I was like my diet bestie and I were talking and she said you know you lost a lot of weight and my pants were falling off and couldn't keep my pants off. Right on so I had to I had to put more holes in my belt. Anyways, I said you know what, I'm gonna go ahead and order a 50 a 48 and a 46 and we'll see what happens.

Scott Benner 59:37
And the 46 fits nice. Oh, it's so wonderful.

Jon 59:41
44 is off there is not the big and tall store.

Scott Benner 59:44
I started last year 38 waist and I'm a 32 now and I swear to you, you go I swear to you, I appreciate you ever I swear to you. I didn't think that was possible. Like, I mean, I really didn't think if I stuck my hands on my sides that my hips and push back then or now, like, I didn't think it was any different. But it is it's so significantly different. It's crazy. Like I put a suit on today, I was out earlier. And I had a suit on him. And I got to this place where I mean, everyone was wearing suits, but people just kept coming up to me like, Oh, my God, you look terrific. And I was like, thank you. I like it's I'm just smaller. That's all there is to it. You know,

Jon 1:00:29
when you have 46 inch waist and you're wearing size 50 or 50 to pass. It doesn't reflect where you are.

Scott Benner 1:00:38
No, it makes it worse. It really does. Like, I'll tell you one of the silliest things that I've done in the last year, super simple. But I've donated a lot of clothing over the last year. And I've always been very careful not to buy a bunch because I'm like, I'm not where I'm going yet. I'm not going to buy a bunch of clothing and then give it away again, like I was living on like the same two pairs of pants, like through the winter. You don't I mean, like doing that thing. Yeah, yeah. And but I, I spend a few extra dollars now on my T shirts, so that they're a higher quality fabric. And I find that I just think I just think I'm presenting better now. And yes, you lose that like clean feeling when your clothing is too big as well. Like it's not just the fabric. Yeah, it's the way it fits you. You look, the old homeless basically, you don't I mean, you look like you're reaching your bag and you took what they gave you is basically how it ends up, you know, coming off.

Jon 1:01:32
It reminds me at the height. Oh, go ahead. No,

Scott Benner 1:01:35
I was just gonna say it actually, it impacts how you feel about yourself. And you don't realize it right away

Jon 1:01:41
when I was at my maximum weight, and went to the big and tall store, and had to go to the far end of the pants, to the 70 fours. And all they have are bright orange and checkered plaid.

Scott Benner 1:01:57
That seems that seems like a joke, doesn't it? Yeah. It

Jon 1:02:00
seems like a cruel joke. Yeah. And, you know, I ordered some jeans just, they're gonna get here tomorrow. Everything's Amazon. I ordered some denim jeans. They're not quite Levi's Bible ones, you know, I'll get this. I don't even know if they still make those. But there's some jeans and I expect, you know, to really dig on that and I'm gonna get shirts. Next couple of shirts.

Scott Benner 1:02:24
Let me ask you a question. I was sharing this with my wife the other day. If I have a larger meal than I'm accustomed to now, and I feel full tick, just have that very full feeling. When I get to a mirror, I almost consciously expect to look better. And and when I don't, I'm stunned. And it's a real I can see that. Yeah. So I told my wife. And as I was saying it to her, she goes, I know exactly what you're talking about. Like if you feel full. When you look yourself in the mirror, you expect to see the old view there. I was like, Oh, my guy suggests. Yeah, please let me suggest

Jon 1:03:01
something that comes to mind. This may or may not be true. But this is a perception I have on it is when you're full like that and satiated. You're on the drug rush. And that same drug rush makes you remember this conditions of that addiction

Scott Benner 1:03:19
could very well

Jon 1:03:21
put you in the mind of that body. Yeah, you become that person that's under the control of overeating, or bad eating. And so you feel like that person and he doesn't change just because of that one meal and you look at yourself and you're like, No, no, I'm still I'm still. Okay. But maybe that's a mechanism to make you think hey, don't it's

Scott Benner 1:03:41
been an illuminating year so far. I have to say.

Jon 1:03:44
I'd like to follow up. I enjoy the journey you've had on that as well.

Scott Benner 1:03:49
Oh, good. I'm glad. Thank you.

Jon 1:03:50
i How's your glucose? How's

Scott Benner 1:03:52
your mine's good pre diabetic diet. Okay. Yeah, I've had my endocrinologist told me last year, she said look, based on all of your, your a one sees over the years that I see she goes, I think it is incredibly unlikely for you to ever develop type two diabetes. And I was like,

Jon 1:04:11
I've noticed super obese people that are dead now, that did not have diagnosed diabetes.

Scott Benner 1:04:17
Yeah. My fasting glucose is they're always like in the, you know, 80s Nice. I think I've shouldn't talk on something probably, but I think I'll be alright. And that that's based. I don't know if I'll get type one diabetes. But well, yeah. That

Jon 1:04:31
gets triggered right? By events, right? You get you get COVID You get

Scott Benner 1:04:35
I've never done trial that personally. So I don't know if I have markers or not. Well,

Jon 1:04:42
you you know as as much as anybody more than anybody the the genetic relationships in the family tree actions. I

Scott Benner 1:04:49
don't think it's not possible, that's for sure. I'm just trying to, I mean, at this point, John, I'm just trying to eat well, and move and continue in the right interaction. Those are my goals.

Jon 1:05:02
Something I wanted to share that that I thought of just a few moments ago, is I like being hungry. Okay. It's a feeling I enjoy. I don't like being hungry to the point where I'm, I'm feeling physically impacted like, you know, I'm low sugar per se but like I'm ravenously hungry, but I like to be hungry and that's a feel. I think that's because that's a feeling I never had. I thought I was hungry. I was obsessed. I was feeding the drug needs. I was hungry for the dopamine. Yeah, but you know, like, so my fasting isn't at all difficult for me. And when I do get a little hungry, I know that dinner is coming soon. I make beautiful food. If you look at my timeline on Facebook, you'll see that I just make really, really good meals. So I was also worried am I going to have a rebound? Where I go from obsessive eating to some sort of anorexics thing, right? And absolutely not. I enjoy my food so much. Good. Good. I'm

Scott Benner 1:06:00
glad I have to say I do too. I had like a like a chicken sandwich last night for dinner. Like I took some chicken breasts and I season them and and and I put a tiny bit of oil in the pan a little olive oil. I fried them up and they were nice and tasty. I put it in a pita threw some lettuce in with it. I graded a tiny bit of cheese over it. I sat and ate it. It was half it was half a chicken breast. And I got done. I'm like I'm full. This is great. I'm good. I don't know what

Jon 1:06:26
the half of the time you spent making. It was as much a part of that meal as for

Scott Benner 1:06:30
sure. Ya know, I love making food. I still do. I like making food for my kids to like, it makes me happy to cook for them. But But beyond that I got up this morning. And I went to a viewing today. So people are like, Oh, Scott in the middle of the weekend a suit but nothing fancy. I did not eat today until about I think two o'clock in the afternoon. And I was hungry at that point. But if I wouldn't have eaten, I would have been okay to. Yep, yep, yep. Now it's 6pm. Like obviously my day is a little upside down because this viewing came out of nowhere and John was nice to move his his recording around with me. I'm probably going to finish with you and go have the other half of that chicken breast into similar pizza again, I'll probably that's probably how I'll end the day. Last

Jon 1:07:14
night I had a cup of soup for my meal. It was a very light. It was a very light day today. I don't know what I've got the frosted to figure that out. Oh, you know, I'll probably I'll probably have an omelet.

Scott Benner 1:07:28
Okay. Oh, I eat a lot of eggs. I love Yep. Yeah. Usually for breakfast, I have a couple of eggs in in a wrap with something some protein usually, you know, something like that. I do that in the morning a lot. Yeah, no, I

Jon 1:07:42
agree. I'm gonna have a sausage. Yeah, it's nice.

Scott Benner 1:07:46
All right, let's it's time for me to ask you if we've missed anything, because I know you had some pretty specific, like, you're very prepared, and I appreciate it. And yet, you're very conversational, which I also appreciate. So I want to make sure we're not missing anything that you meant to talk about.

Jon 1:08:00
You know, I wanted to talk about the consistency and the improvement, the fact that it wasn't just an overnight thing and gone. And so the idea of sustaining a healthy relationship with my diabeetus. And the other factors in my life is I think a big part of my message is that it's not rigorous for me. It's very affirming and positive, it reduces stress in my life. I'm not at odds with the way I eat. And I'm constantly rewarded with the results I see. And I continue to increase those rewards. It's, you know, diminishing returns. It's not really here yet, because there's so many things that I continue to be able to improve. And another part of the message is it's never too late. And I guess another part of the message is, there's more that binds us than separates us. And so a healthy lifestyle, healthy social interactions, healthy interactions with food, all these things will reduce our suffering, and help us to focus on the things that are effective in treating the chronic illnesses we have. And so I really appreciate that your group was open to all

Scott Benner 1:09:11
of us. Oh, no, it's my pleasure. I want very much for the group to be open to everybody. I also think that what helps you as a person with type two diabetes, what helps a person with type one diabetes? And what how, what helps the person who doesn't have diabetes? Speaking about like, just general health, food, that kind of thing? I don't know that any of us are in a different boat than anybody else. Finger you know what I mean? I mean, I think quality food at a reasonable proportion is something everyone should be aiming at. I just think that people with diabetes are forced to pay attention to it sooner in life than maybe people without it are.

Jon 1:09:47
Yes, but you know what the Epilepsy Foundation as a whole webpage about addressing diet and exercise, right? Everybody

Scott Benner 1:09:55
should be doing what you're doing to some degree or another So obviously, it wasn't easy for you, you had mitigating factors, so to a lot of other people, but I mean, it's just very impressive that you stayed after John, you're you speak like a young man, I don't know if you're aware of that or not like, and you have a younger voice, but like, it's important to remember, you're 63 years old, you know, and you're, and you're doing these things. And you have the attitude of somebody who's 25, and just gained 10 pounds and realized, Oh, my God, it's getting away from me, you're trying with that kind of energy. And I think that may be the most impressive part of this whole thing, to be perfectly honest. And if people go back to listen to your first episode, that a number of things stacked against you, when you're growing up, too. So yeah, yeah, it's a bit rough. It's a bit rough. It's a very kind way to talk about a child. But yeah, it was a bit rough.

Jon 1:10:43
I like to say, it's half jokingly or whatever. But I'm a 16 year old guy who acts sometimes like he's 12 and thinks he's like, 25.

Scott Benner 1:10:54
That's good, though. I think that there's I don't think there's anything wrong with that. I just think that it'd be easy for people to listen to you and forget that you're a 63 year old man who's been through all this and whose body has been through what it's been through, and you're still putting in this effort, and you're willing to take slow returns to?

Jon 1:11:11
Well, I believe the biggest gift I have right now is sharing my success with other people that can identify with it and adopt some of the elements, you know, see hoping it and maybe adopt some of these elements to address their needs when they're much, much younger.

Scott Benner 1:11:25
Yeah, I want to say to that, I think the GLP has helped me. So I've always, like as an adult, I always kind of endeavor to find things that make me more patient, because my patients is not is not good, right? So I do things like iraes cactuses, because they grow very slowly. Nice. And if you get it to grow an inch in a year, and you don't kill it, you've really accomplished something. And so I like the idea of doing something that doesn't pay you back right away. The GLP helped me with that, too. And here's how I knew I was going to lose weight on the GLP. I just knew I was going to, but I knew it wasn't gonna happen quickly. And I was able to, instead of saying, I gotta lose weight, I want to be 10 pounds lighter in a week or a month, or like, you know, like having that kind of like fervor for it. I was able to say, I don't care how long this takes, because I know when I get there, I'm gonna be where I mean to be. And that was really helpful. And then because of the GLP, there was weight loss along the way. So I didn't endure to in three weeks in the first six months where I was like, Oh, my God, my weights not going down. always felt like it was working, which allowed me to actually be patient, II call it a crutch or whatever you want. I honestly, I'm looking for doctors to come on and talk about how the medications work. I think I've got a couple lined up. But I genuinely believe I have some sort of a deficiency that it's covering. And just being able to see things moving in the right direction allowed me to act about my weight, the way I do about the cactus, I grow, there's a little light green ring. It grew. And I was able to say that's fine, because it's alive. And I've got all the time in the world. So I'll just wait. I don't know. It's just I think being patient is a big part of having the kind of success that you had. And I don't know what you think about that.

Jon 1:13:24
Well, I can relate in one way directly. I have eight aquariums here. And the largest are 60 and 75, gallons and small Sarkar. 40. I practice a style of fish keeping that is you would call a balanced environment. So a lot of people are focused on changing the water in the tank regularly and adding additives and all this, my focus is on doing as little as possible to achieve a balanced ecosystem. And my aquariums are just gorgeous, full of plant growth, the fish live forever, everything's pretty cool. And for me, that is a part of my diabetes, self care, the ability to maintain those environments in balance is informed by my ability to do it myself. So your thing with the cactus I can really relate to, because my thing with the aquariums is related to my self care. Yeah,

Scott Benner 1:14:15
I've talked about this in the podcast, a couple of little places, but I've almost by mistake become a person who owns a chameleon. And it's lovely that chameleon is absolutely lovely, but it was a gift. And the people who gave me the gift as much as I appreciate it didn't actually buy me the chameleon that I would have bought for myself had I bought a chameleon. So once I learned how to do you know all and it's another one of those things, it's an incredible amount of detail that you know, to do to do it right. And, you know, again, there's this living thing on the other side waiting, you know, for you to to do it right, you know, so I added a second chameleon I have to I'm not going to get any more I promise. The second one I got grows incredibly slowly. For over like three years to become, even to an adult size and may keep growing beyond that. But it needs a really large enclosure. And it's the same idea that there's this little tiny baby thing right now, that looks like it's in a world that's too big for itself. But it's but it's not an I don't get to see it fill up unless I do a good balanced, slow and steady job for this little animal for at least three years, right, then go. And I think of it the same exact way. Like I like that it can't be rushed. I think it's important for

Jon 1:15:36
people. And that's the way I feel about my goals for my diabetic control. My weight is, you know, it's been going actually remarkably quickly, but I never had any impetus to do it. Any of the feed i There's a phrase I use is one millimole at a time,

Scott Benner 1:15:51
that's a great, it's a great way to put it I if you're measuring your weight loss, your health recovery, your diabetes, care, any of that stuff in days or weeks. I think you're putting yourself in an unfair position.

Jon 1:16:03
You'll never get there. You know, you have to do you have to keep hiking. And when you get to the next rest place, you look down and you see the progress you've made. And then you snack, you rest. You drink your water and you get up and you walk the next mile. buy

Scott Benner 1:16:16
another pair of pants two inches smaller and get going again.

Jon 1:16:19
Exactly. I mean, can you imagine when I get to go to town and bypass at a store? Yeah, no, I'm

Scott Benner 1:16:26
excited for you honestly. Yeah, seriously. That's a couple months away. Yeah. Now I've had listen, I feel weird saying this. But you know, there's a death in my extended family came out of nowhere. I had to go to a viewing today. And it was yesterday afternoon, I said to my wife, oh my God, I don't have anything to wear to this viewing. And I ran out last night at like, seven o'clock. And I was like, she's like, What are you gonna do? Am I gonna go to Macy's to get a jacket? Like, you know what I mean? Like, I got a, you know, so be respectful. I met Matt Listen, he's a great guy. And, and he died. And he deserves for me to show up at his viewing in a suit. And it's just how I feel. Right? So. Yes, so I'm out. And I gotta tell you as sad as the reason was, I was shopping. I never had a better half an hour of my life in a store. I mean, I tried every jacket on, I look good. And every one of them. I was like, Oh my God. Like I thought that color wasn't for me. I thought that print was it wasn't that it was I was overweight. I didn't even realize it. And so I you know, I was able to shop I felt terrific. You know, like doing it I at one point, I was like, I'm going to try it on the slim cut. I was like, Oh my God, this fits to like, none of this makes any sense. I walked out of there, I felt like I was 12 feet tall. Like seriously.

Jon 1:17:43
I don't want to be too presumptuous. But you know what? I'll bet you the old man smiled at that. No, I

Scott Benner 1:17:49
hope so. I hope so.

Jon 1:17:50
You know what I'm saying? Yeah, that's, that's the best tribute you could make anybody you love is to take care of yourself. And to be in a place where you can feel that way. I

Scott Benner 1:17:59
was the happiest person that a funeral today you've ever seen in your life on because I was just like, Man, I know, I look good in this suit. As much as it's not about how you look, it's how healthy you feel. It is like, to some degree, I feel better because I look better. And that's just you know, I didn't dislike myself before John, but and I don't like myself more now. But it's just that I'm having a different lived experience at this point. I

Jon 1:18:24
think that's a good way to put it. And when I put on those 40 sixes, I had the 46 and 48. In the 50. I said, Let's start at the 46 I can get done with this. And when they fit. It was like, you know, the heavens opened, there were trumpets, there was like, a little giggity giggity. I mean, it was a high. It felt really good. It felt like arriving

Scott Benner 1:18:43
oh my god even pushing the clothing into like a one of those bins where you make the donations. I've never been so happy to give something away that I just bought. You know, I was like, oh my god, hope somebody else can use this, but it's not mine anymore. And I don't need it. Because, um, you know, 3836 34? You know, actually, when it went to 32, I decided I was like this doesn't make sense, like so.

Jon 1:19:05
And you know what, I have that history of gaining weight back. I broken through that so far beyond that. I'm never going back.

Scott Benner 1:19:13
I feel that way too. My wife was like, Are you going to keep anything? And I was like, No, I was like, I will not. It'll be my punishment to myself. If I have to go back out and buy something at a bigger size. So then I don't know if that's healthy or not. But I just I was like, I'm not keeping any of this because it felt like a crutch if I did, honestly. Hey,

Jon 1:19:30
I did get to talk about everything. And I again, I want to thank you for the opportunity to to share my story again.

Scott Benner 1:19:38
Oh, of course. All right. Well, John, I'm terrific. I'm gonna let you go defrost your meal and I'm going to make my chicken sandwich and we're all gonna go be happy and healthy. Yes. Hold on for me for a second. I'd like to say goodbye privately. Sure, thanks.

Let's get rid of that FOMO by visiting Omni pod.com/juice box and checking out the Omni pod five today get rid of your fear of missing out on Omni pod by getting yourself an omni pod. A huge thank you to ever since CGM for sponsoring this episode of the podcast. Are you tired of having to change your sensor every seven to 14 days with the ever sent CGM you just replace it once every six months via a simple in office visit. Learn more and get started today at ever since cgm.com/juicebox. podcast

if you have type two or pre diabetes, that type two diabetes Pro Tip series from the Juicebox Podcast is exactly what you're looking for. Do you have a friend or a family member who is struggling to understand their type two and how to manage it? This series is for them seven episodes to get you on track and up to speed. Episode 860 series intro 864 guilt and shame episode 869 medical team 874 fuelling plan, Episode 880 diabetes technology episode 85 GLP ones metformin and insulin and an episode 889 We talk about movement. This episode is with me and Jenny Smith. Of course, you know Jenny is a Certified diabetes Care and Education Specialist. She's a registered and licensed dietitian and Jenny has had type one diabetes for over 30 years. Too many people don't understand their type two diabetes. And this series aims to fix that, share it with a friend or get started today. I know that Facebook has a bad reputation, but please give the private Facebook group for the Juicebox Podcast. A healthy once over Juicebox Podcast type one diabetes. The group now has 47,000 members in it, it gets 150 new members a day, it is completely free. And at the very least you can watch other people talk about diabetes, and everybody is welcome type one type two gestational loved ones, everyone is welcome. Go up into the feature tab of the private Facebook group. And there you'll see lists upon lists of all of the management series that are available to you for free in the Juicebox Podcast, becoming a member of that group. I really think it will help you it will at least give you a community. You'll be able to kind of lurk around see what people are talking about. Pick up some tips and tricks. Maybe you can ask a question or offer some help Juicebox Podcast type one diabetes on Facebook. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com

---

Please support the sponsors

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate

#1241 Mannkind CEO Talks Afrezza

In this episode of the Juicebox Podcast, Michael Castagna, CEO of MannKind Corporation, delves into the innovative world of Afrezza, the inhaled insulin. Discover the science behind this breakthrough in diabetes management, its safety profile, and how it compares to traditional insulin methods. Michael addresses common concerns and misconceptions, providing valuable insights into ongoing and future studies. Tune in to learn more about how Afrezza is changing the landscape of diabetes care​

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.

+ Click for EPISODE TRANSCRIPT

---

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

Scott Benner 0:00
Hello friends, welcome to episode 1241 of the Juicebox Podcast.

Today, my guest is Mike Castanea. He is the CEO of the MannKind Corporation better known to you perhaps as the people who make the inhaled insulin a Frezza. Please don't forget 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. You can help support type one diabetes research right from your phone right there at home by going to T one D exchange.org/juicebox. and completing the survey join the registry complete the survey the whole thing should take him out 10 minutes and the answers to your simple questions will become part of how things move forward T one D exchange.org/juicebox. The T Wendy exchange is looking for people with type one diabetes and caregivers of people with type one who are US residents. When you place your first order for ag one with my link, you'll get five free travel packs and a free year supply of vitamin D. Drink ag one.com/juice box want to save 30% off your entire order at cozy earth.com It's as easy as using the offer code juice box at checkout. This episode of The Juicebox Podcast is sponsored by ever since the ever since CGM is more convenient requiring only one sensor every six months. It offers more flexibility with its easy on Easy Off smart transmitter and allows you to take a break when needed. Ever since cgm.com/juice box. This episode of The Juicebox Podcast is sponsored by us med U S med.com/juice box or call 888721151 for us med is where my daughter gets her diabetes supplies from and you could to use the link or number to get your free benefit check and get started today with us med this show is sponsored today by the glucagon that my daughter carries. G voc hypo Penn Find out more at G voc glucagon.com. Forward slash Juicebox

Michael Castagna 2:28
Podcast got my Castanea the CEO of mankind Corporation.

Scott Benner 2:32
Mike, we have we've been trying to do this for like two years it feels like

Michael Castagna 2:37
it feels like and maybe longer because of COVID The time has just flown by Yeah,

Scott Benner 2:41
really interesting. People always say to me like what are you gonna have someone from mankind on? I was like, I'm trying. Like I'm trying to do my best. I guess you're here today. I'm going to ask you questions about about the inhaled insulin, the Frezza. Am I saying it right? I Frezza? Because you got it right. Nice, okay. And I'm going to kind of pick through how we got to where we are now what your goals are for the future, that kind of thing. So has the patent been sold? Like did this start out at a different company? What's the lineage of it?

Michael Castagna 3:10
Yeah, no, great, great question. never a better time to talk with us. As we get ready for new data coming out here very shortly, your listeners will be even more interested in healthy and inhaled insulin. As we go forward, the technology goes back to 1991. So actually 33 years. And there was several companies that are founder after the man owned, and he was investing in inhaled insulin back in the late 90s. Mainly because he was working on mini med the insulin pump as many your listeners are really familiar with Medtronic. And he realized that the major problem was the input of the insulin. And the everything we're trying to do is manipulate that profile the insulin to increase your ability to control your sugars. But but it was very hard to have that passed on set that he was looking for as an engineer and a physicist, he kind of knew the mechanics and engineering before any of us can even see what CGM look like he had that figured out in the late 90s. When he sold many meds Medtronic, he then stood out to build mankind in 2001 to three of his companies combined them and made mankind. And so the technology has always been within. And we've patented over 1200 patents at this point. And the company has continued to progress since 2001. Till today. And it took I always remind people and they asked me like, why are drugs so expensive. And think about insulin as 100 year old product, it took us 20 years 75 trials and $3 billion to take on your your old product and change route of administration. And you got to think about you know, that's shouldn't be that hard. It shouldn't take that long. But that's how long it took just to bring this innovation to patients. And the good news is, it'll be here for the next 20 to 40 years that I can see. And so we're we're just getting started. I hate to say that because as you know, this product has been around for a while, but we had to redo a lot of the data. And we'll talk about that today. What we're doing now and what's coming.

Scott Benner 4:55
Yeah, I mean, it's interesting because as a layperson when this first popped up in you know this like ice then people are like there's an inhaled insulin. Are you going to let because people look to me, which I don't even know how I got in this position sometimes Mike but like, you know, they looked at me like are you gonna let your daughter use this? And I said, Well, top of my head, I'm going to avoid her inhaling something if I can, only because I don't understand what comes next. And so, I mean, obviously if there's that much money and that much time being put into it, you don't have those concerns, or I'm assuming you diversify somehow. So why? Why shouldn't I be concerned about it?

Michael Castagna 5:32
Yeah, I mean, just use some color, I take the product personally, my family takes it, we're we wouldn't take something we didn't believe or have competence in. Right. And so that could just some confidence that could mean we're not that smart. But I think we're pretty smart. You know, when you when you study drug development, right, you're always looking for toxicities. And so by the time you get FDA approval, you've been through the wringer in trying to show that it's safe and effective, sort of that safety profile was established many, many years ago throughout all the clinical trials. And then people say, Well, this is a lifelong treatment. How do I know when you think about inhaled insulin? You know, in our particular technology case, we bind human insulin, water, and a particle called FTK P. And what happens is when your lot when the particle touches your lung, it releases the insulin directly into your blood. And the FTAAP gets excreted. So think about a car, taking passengers and delivering them and then leaving the FTK P doesn't metabolize doesn't do anything in your body. So what you're really taken as the human, it's on the water. And we know your body likes human insulin, and we know the shows in your body as well. It's not an analog insulin, it's not a modified insulin like Lantis or something like that. And that's what people miss. They think they're putting a novel target in their lungs, and is that going to be safe and effective? And obviously, safety's number one. And so we've studied this and over almost 3000 patients and their long term lung safety study was two years. We've done a lot of trials for six and 12 months at a time. And now we're going into kids. And so that was one of the obviously questions that we asked the FDA is are you comfortable with us going into children, and they were so we started that journey six years ago. And that trial be reading out later this year.

Scott Benner 7:14
So that is that the inhale three study. That's

Michael Castagna 7:17
the inhale one study. So inhale, one was children. And then inhale three was one I funded because I believe the number one alternative choice that people go to his insulin pumps, and we didn't have a lot of data head to head on insulin pumps. And so we wanted to do a bigger study showing usual care which would include insulin pumps or MDI.

Scott Benner 7:35
Ultimately our injection helped me understand the the process. The FDA in the United States, they lean a little more into being aggressive letting people decide what they want to use, but then they'll kind of tack a post marketing study on to you if they think it needs more looking now like the EMA, UK that kind of stuff over there in the EU. What did they say to you like how come you don't have approval in the UK for example? Yeah,

Michael Castagna 7:59
they never said no to us just to be clear, we never filed you know, okay. And so at that time, if you

Scott Benner 8:07
take insulin or sulfonylureas you are at risk for your blood sugar going too low. You need a safety net when it matters most. Be ready with G voc hypo pen. My daughter carries G voc hypo pen everywhere she goes, because it's a ready to use rescue pen for treating very low blood sugar and people with diabetes ages two and above that I trust. Low blood sugar emergencies can happen unexpectedly and they demand quick action. Luckily, G vo Capo pen can be administered in two simple steps even by yourself in certain situations. Show those around you where you store G vo Capo pen and how to use it. They need to know how to use G vo Capo pen before an emergency situation happens. Learn more about why G vo Capo pan is in Ardens diabetes toolkit at G voc glucagon.com/juicebox. G voc shouldn't be used if you have a tumor in the gland on the top of your kidneys called a pheochromocytoma. Or if you have a tumor in your pancreas called an insulinoma. Visit GE voc glucagon.com/risk For safety information.

Michael Castagna 9:19
When the company launched Pfizer, Sanofi was supposed to file internationally. And when they handed the product back to us, those filings were all stopped. And then mankind honestly was almost out of money. And Helen's almost disappeared, went bankrupt. And so we just didn't have the money to file around the world. We did file in Brazil, we have filed in India, we got approval in Brazil, we're expecting approval momentarily in India. And we know in Europe, they're going to want pediatric data. And so that was one of the things we are waiting for extraordinary funding and pediatric study. And it takes takes about two years to get a drug approved from the time you file and you're better off trying to get one package up front in Europe or Canada or some of these markets because the poor pricing is determined at launch. And so once you launch, if you don't have a full data package or full expectations, you may not be able to have the right price point. And then you're stuck with that. And you may not be able to launch and commercialize the product. And that's really what the holdup has been in Europe is we wanted to get the enail three data show and head to head against insulin pumps. We wanted to get the pediatric study done to show that we can have an expanded population. And we want it to look we're also looking at some other some other areas we'll we'll talk about but but that total package for you're also with the economic analysis will be really important for Europe. And that's really what we're waiting on. So that's, that's coming.

Scott Benner 10:36
Tell me more about how close did the company come to not existing anymore?

Michael Castagna 10:41
For weeks, by really twice? Yeah. When I became CEO, we had less than we were burning about 24 million a quarter to stay alive. And we had about 20 million in the bank. And so I first joined the company, we really were at the same point in 16. And then again in 17. And then at one point, COVID-19, I can remember exactly or fortunately, but we were four weeks away. He was 2018. Actually, we were signing a deal. And it was a rumor I was going we were going bankrupt and everyone's getting fired. And it wasn't true. We were about to announce a major deal. And we were holding out for that pemilik motors get the paperwork done. Now the company has been public company for 20 years, which is good and bad. It gave us the capital to bring innovation to market. But it was also brought evil side of bias. They've been a public company and people that make money by trying to make companies think. So that was a it was a love hate relationship. But I think today we've built good shareholder return over the last seven, eight years and things are going in the right direction. People

Scott Benner 11:38
would never think about that. Right? Most people wouldn't consider that somebody would try to short your stock to make money or something like that. And you're you're better off trying to make insulin and this is all happening. What made you take the job? Where did you come from before mankind?

Michael Castagna 11:51
Yeah, so I'm a pharmacist by training, I chose to want to build a career in the pharmaceutical industry because I thought I can make the biggest difference in the world by doing that versus working in a hospital or running a pharmacy chain. And I feel very good about that choice. And I look back in my career I worked in HIV and helped build the one pill once a day regimen I worked in fertility I worked in rheumatoid arthritis biosimilars growth hormone, and number and growth hormone trying to get a parent to inject their kid, just once a day for three, four years was a nightmare. And I think about now diabetes and insulin, you know, trying to inject them three to five times a day or a pump is equally as difficult when you first go down there life depends on you. And that to me is very stressful just thinking about it. Sitting around Bristol Myers, Novartis came out to California for Amgen. And I was very happy at Amgen. And then when I was a shareholder, mankind until it got approved. And then once I got approved, I sold my stock. And then about a year and a half later, I see I do turn around. That's kind of what I specialize in. It was 20 years. And I saw that inhaled insulin came back from Sanofi and it was in Valencia, California, not being from California, I didn't know where Valencia was. So I had to do a Google search. And there was an hour hour and a half for me. I emailed the CEO and said, Hey, I would love to help you turn this around. I've seen the patient profiles online, I've seen what this drug can do for people to make a difference in their life. And for me, that's what life is about. It's about how do you make someone want to happier everyday? How do you make a tremendous difference in their life. And I actually did not. Some people know this, but I didn't want to work in diabetes, because my father, I didn't know him growing up. By the time I found out who he was, he had passed away from complications of diabetes. So for me, I didn't want to work in a disease every day that I thought about I missed out on this person my life. Yeah, unless I thought I can make a difference. And that's when I saw inhaled insulin is that time Dexcom was barely popular in 2016. But I see these people these incredible time and range profiles and flatlines. And I was like, What are they doing? And how are they doing it? And that's really what convinced me that mankind was something worth taking. And so long story short, how man was supposed to meet him, our founder, and he had passed away on February 25 2016. And the only reason I remember is this my daughter's birthday. And had he not died that day, I probably wouldn't have stepped off the legend to take the risk. But you know, she's your kids are important to you. And that that was an important date. And he chose the day he died. He went and one more wedding anniversary with his wife, I was told. And that was it. He was 91 years old, do everything he could and and he had a great life and did a lot for society.

Scott Benner 14:22
So you said some people in your family use a Frezza? Who

Michael Castagna 14:26
I think for their privacy of your mind. I don't want to answer but I have a lot of family of 40 cousins and

Scott Benner 14:32
and there's type one there. type one and type two. Yeah, my dad,

Michael Castagna 14:35
my dad had seven children and he has lots of grandkids and some of them suffered in diabetes as well. I

Scott Benner 14:41
want to ask questions about using it but I want to get past the like I have listener questions here and they're gonna you know, they say, I hear some people say they have a persistent cough from it or they can't take it or that it hasn't been approved because of concerns about breathing issues or lung cancer. Like can you clear that up for me? Tell me everything you know about have that and then I want to hear about how it works and how people use it day to day. Sure. So

Michael Castagna 15:04
if you have asthma, or COPD, this is probably not the right product for you. Right. And that's because we did a study showing that a kid has me at a higher risk of bronchial spasm. And so we don't disagree with that conclusion. And that's about 10 20% of people in the world that the country that have that underlying disease, and so that's probably not the right product for them. In terms of a lung cancer, you know, you gotta remember there's been over by now 20 30,000 People took a president us there's a bunch of exuberance. So there were some imbalances in the trials of people who smoked, who develop lung cancer. And, you know, unfortunately, we smoke you probably more prone to lung cancer. But I don't think there's ever been a causation that inhale and some causes lung cancer. And so you know, when you study a drug in 4000 people, 3000 people, unfortunately, a subset of them will get cancer on them and other types of cancer, lung cancers, and that, you know, but that rate of cancer was no higher than the general population. That's remind people when you're studying drugs, and sick people, in general, you have side effects that come up, and you got to manage those. Also,

Scott Benner 16:05
the idea is, if you would have followed those people, most of them would have gotten the cancer they got to begin with, it's just you're grabbing a subsection of people and watching them closely. Is that right?

Michael Castagna 16:15
Right. And you're watching them closely, and FTS, is to go back and look in time and sway, go back and look for cancer. And so you found two more people post through trial that got cancer. And so but if you think about the product and the 30, some 1000 people have taken it, we have knock on wood, only had one additional lung cancer recorded, which was in a person who smoked for 40 Pack years, and took the drug for three months and amendments. So So I feel pretty good about the safety profile, the safety and surveillance we've done. I don't see an increased signal, we'll need to work with the FDA on that question. But I always say, you know, we know how sugars, cancer, we know how sugars cause peripheral neuropathy, retinopathy, kidney disease. And so for me, it's it's about avoiding the complications of diabetes and making sure you have really, really good control. And as we know, in this country, that control has not materially changed in 2030 years. So how do we keep giving people the best set of tools that work for them. But the safety profile, this product, I think, is pretty proven at this point after a decade on the market. It's not like it's novel. It's not like it's a new drug. It's human insulin that people take. Yeah, it

Scott Benner 17:24
feels like there's a, we're in a moment here. Because I feel like you're about to tell me that you've got some news about, you know, children and Impreza, I just interviewed a man this morning who had type one, since he was 50s 58. Two and a half years ago, his doctor on a kind of a whim put him on two and a half milligrams a week of Manjaro. And now he doesn't use insulin anymore. And that's not to say that Manjaro cured has type one diabetes, but he 1,000,000% has type one diabetes, got the auto antibodies there. And as I was talking to him, it just becomes abundantly clearly, we don't even know what that GLP completely does get, like, and how long is it gonna take to figure that out? You know what I mean? Like, you need to be interested, when you see stuff like that, you know, like, you need to say, I wonder where we could take this and I feel that way about a Frezza. I think people will say like, I mean, I've had probably, I don't know, maybe five, eight people on the show who have used it, or are users of it. But I see people online who are fervent, they are like, excited to tell people about it, you know, like, where's that excitement coming from like, so for a person who's accustomed to wearing a pump or injecting and they count their carbs and they cover their insulin, they get high? They correct. They get low, they eat some food, like when that's their day to day, like how does that change? If it does with a Frezza?

Michael Castagna 18:43
Well, I think you know, the good thing I can tell you is all the people you see online, all the stories out there are all self driven, meaning we can't pay for these stories. I had someone on Reddit kick one of our patients off saying, Oh, they can't be that good. I'm like, we don't pay people we can't, they'd have to disclose that that's illegal. And so I do want your listeners to first know and he still use the other mankind to not pay to get place they they generally are people sharing their public health, which is actually why I took the job because I saw this wonderful feedback loop in social media that I said, Well, that's amazing. How can I help bring that to life. And what those patients did is a few things that were different than our trials. One, one, they figured out appropriate dosing. And what I mean by that Scott is, you know, the company at the time was developing a product that was more one to one ratio in terms of how label doses to the conversion will be seen over time as patients up to titrate, up to about 1.5 to two times their injectable dose. And so that's the studies we're now doing to show that that increase those gives, you know, more hyperglycemia number one, an equal or better control number to do what you're doing today. So a lot of the new data you'll see coming out will be in that new dosage scheme coming out. Nada and future conferences. The other thing that people ask me like why, what do they feel differently? And then I'm one thing I get is I feel free and the question is, why do you feel free You don't realize how much stress you have on counting carbs, how off you are on the ratio of counting carbs, your insulin sensitivity ratio. People don't realize the temperature of your skin, the angle of injection, pump occlusion sites, you know, back content, we miscalculate all these things. Yeah, right. And they're not that accurate. And so I always joke and say you think you're giving one unit of insulin. But if you change the angle, the injection, it's point 5% off, if your temperature was hotter North pasture, there's all kinds of things that go into batch to batch variability than insulin also happens. When you think about a present, we fill every cartridge to the same, meaning every four unit is identical for units of insulin, there is no variability, because what happens if the batch comes out a little less, we follow the pattern a little bit more. So it's always the same where biologic when you're injecting, you can't change the volume of the biologic. And so every living batch of cells that you produce in biologics, in general, have some variability inherent in the cell organism, and you can't keep in that range. And that's not the case with the present. So you pretty much get this similar dose every single time. But there's all kinds of variability that a patient goes through. And the second part of that variability is timing. And so you're trying to guess the peak of insulin to your peak of food, and those just mismatch by an hour or so. And then the insulin is in your body for four to six hours, FTO. And yet, and so that's really what people you know, we've done enough studies now that I can confidently tell you, the time I Bolus, my insulin, whether it's a pump or a pen, it's generally peaking about 90 minutes later, and it's out my body four to six hours later. And this is why people say, Oh, I got snuck up on a low hyperglycemia is because we're trying to avoid those late and lows. And you're frustrated as a person living with diabetes, that, you know, your sugars aren't coming down, you're seeing them go 200 to 6300. And you're then given another Bolus, and then you're stacking your insulin and you're crashing two hours later. And that whole process is stressful and frustrating. And when you're out at dinner and drinks with your friends and family, you don't know you're gonna have one drink or two, you don't know if you have dessert or not. And that's all you're thinking about as you're talking to somebody. And in the case of a president, it changes that entire equation, reverses that meaning you're in control your sugar, because I inhale, when I eat, when my food shows up, I'm not guessing when my food minute show up, I'm not going to the bathroom to hide, I can inhale in two seconds. And that insulin is now working within five to 10 minutes. And so because it's inhaled what people it's called monomeric versus hexamer. And we make a Frezza. We bind it in an acidic form and monomeric form, which means soon as it goes into the lungs, and it disassociated from Fe KP, it goes right into the blood in its active form at your liver very quickly. And you can show when that's why you want to get the right dose up front, because you really suppress the liver, hepatic production in the liver. And people don't realize that that process when you take injectable insulin, breaks down about 45 minutes later, and then starts to hit the liver and then steps off the signal. And that's why injectable insulin just takes about 90 minutes to kick in. It's nobody's fault. Yeah. And so our patients aren't counting carbs. That's number one, you're taking a four, eight or 12. When you want to take more, you take more, and you could take it as soon as one hour. So if I was doing Hill, and I see my sugar set up to 200, you can take another four, eight within six minutes and bring that control into your range that you're trying to import. So how

Scott Benner 23:11
do they figure out like, the cartridge size that they want to use? Because one of my notes here is just it says dosing confusion. It says like I ask people who are successful with the Frezza how to dose they're like ah, you know, like sometimes I take a four and I take an eight like, like how is that? Like? How do you direct people where to where do they start to learn? I used to hate ordering my daughter's diabetes supplies, and never had a good experience. And it was frustrating. But it hasn't been that way for a while actually for about three years now because that's how long we've been using us med us med.com/juice box or call 888721151 for us med is the number one distributor for FreeStyle Libre systems nationwide. They are the number one specialty distributor for Omni pod dash. The number one fastest growing tandem distributor nationwide, the number one rated distributor index com customer satisfaction surveys. They have served over 1 million people with diabetes since 1996. They always provide 90 days worth of supplies and fast and free shipping. US med carries everything from insulin pumps and diabetes testing supplies to the latest CGM like the libre three and Dexcom G seven. They accept Medicare nationwide and over 800 private insurers. Find out why us med has an A plus rating with the Better Business Bureau at us med.com/juice box or just call them at 888-721-1514 get started right now. And you'll be getting your supplies the same way we do. This episode of The Juicebox Podcast is sponsored by the only six month where implantable CGM on the market, and it's very unique. So you go into an office, it's I've actually seen an insertion done online like a live one like, well, they recorded the entire videos less than eight minutes long and they're talking most of the time, the insertion took no time at all right? So you go into the office, they insert the sensor, now it's in there and working for six months, you go back six months later, they pop out that one put in another one, so two office visits a year to get really accurate and consistent CGM data that's neither here nor there for what I'm trying to say. So this thing's under your skin, right. And you then wear a transmitter over top of it, transmitters got this nice, gentle silicone adhesive that you change daily, so very little chance of having skin irritations. That's a plus. So you put the transmitter on it talks to your phone app tells you your blood sugar, your your alerts, your alarms, etc. But if you want to be discreet, for some reason, you take the transmitter off, just slip comes right off no, like, you know, not like peeling at or having to rub off it. He's just kind of pops right off the silicone stuff really cool. You'll say it. And now you're ready for your big day. Whatever that day is, it could be a prom, or a wedding or just a moment when you don't want something hanging on your arm. The ever sent CGM allows you to do that without wasting a sensor because you just take the transmitter off. And then when you're ready to use it again, you pop it back on, maybe you just want to take a shower without rocking a sensor with a bar of soap. Just remove the transmitter and put it back on when you're ready. Ever since cgm.com/juicebox, you really should check it out.

Michael Castagna 26:38
My doctor asked me the same time every time I get how much and LM can you use? And I said, Well, depends what you mean. It depends on if I have a big meal I take a lot. And if I don't I take a little. And he doesn't well, how do you know? And I said, Well, you kind of get to know the product. It's kind of one of those things like you know how to drive and are you going to 60 or 65 or something like you just learned through the process of experience. And what I tell people is if your sugar's at 200, right, you take a four and you're gonna see how much of four drops you know, think about a four is more like two units of injectable. And you know, tennis generally are going to drop you 160 points, which is where you'd be worried about. So a four unit cartridge, you're going to see does x maybe drops you 30 points, maybe jumps to 50 points. And just know if you're trying to bring your sugar's down, you know, a little bit more, you might take an eight and then see what that does to you. You know, I don't worry about what I eat. I was funny. One time we did an FDA commercial and FDA made us take out food in the commercial because they didn't they said people live in diabetes shouldn't be eating pizza or desserts. But our patients do often live their life and they do take their product. And yes, we don't condone that or endorse that behavior. But the reality is, it's about controlling your sugar, and us giving you the tools, whether it's our product and other products to do that. But I always tell people, you know, like, right now the studies we're doing to to your point, Scott, we're given the first dose in the office, because we give you a shake, and then we give you the president, because no one ever sees their sugars come down on the first hour. And all of a sudden, like, Oh, my God, am I gonna go low? Well, no, because it 40 minutes, 45 minutes, the President had a peak effect. within the first hour, even if you went from 190 to 90, you're pretty much you know where you're going to be at that point. Right. And so that's what people don't understand. Even unfortunately, the Dexcom arrows will still show double down, you're like, oh my god, I'm gonna go low. And I say just wait 35 to 45 minutes and see where you are. Now. Yeah, be safe, have something next if you need it. But the reality is just give yourself 30 to 45 minutes to see how the product works. And then, you know from there, you're going to learn within a couple of days. That's what we see within seven days when you live with type one diabetes. Unfortunately, your your doctor, you know exactly what your body does, you know how to respond to various foods. And you're going to see how this drug works relative to your own experience. The area, I'll give you some, for your listeners, I'm sure a lot of people do try this is a lot of people will use it on top of an insulin pump. And then they'll the Bolus are pumped and they're frustrated. And then they'll take a phrase on top of it, or present does its job it brings down your mealtime control. And then all of a sudden that pumped insulin kicks in two hours later and they go low and they want to blame the president and the reality is that Bolus just takes an hour and a half two hours that wasn't our fault. We did our job we cleared out your sugar your pump finally kicked in because you got tired of waiting for it. I just give people caution right we don't recommend using on top of a pump we know people do that. But that's some of the work that I see people often these tell me Mike price was too powerful. I need to tune a cartridge and I said you must be on an insulin pump. How'd you know because don't whoever asked me for two unit cartridges or didn't generally on insulin pumps. So

Scott Benner 29:30
are people so people generally speaking are shooting Basal insulin like Joseba or something like that. And then using a Frezza for meals were to break high blood sugars,

Michael Castagna 29:40
their meals full time meal meal tolerance. So I look at our population today and half of them have type one roughly and half of them have paid to make juice could be on GRPs basil doesn't matter. They're on all kinds of stuff right? And they add Frezza for their mealtime hives and so that's that's one population. And then that's like one population. I See it in our in our data a couple of different ways. We see some people use a Basal full time and present for meals. We see some people use it just for special occasions or stubborn highs. And we some see some people use their pump for their Basal modulation. And then if present on top, we don't have a lot of data on that third scenario of people just using it. Or on top of their pump, we have some studies we've done, but it's very limited data out there. And the data wasn't good or bad. It just showed it works. But don't show it any better than what you're doing.

Scott Benner 30:27
Yeah, would be interesting to see someone like on loop, for example, but not but not for boluses for meals, and then do that, that would probably be interesting to say, Yep, I found myself confused a second ago. So if if somebody's injecting or using a pump right now, and their insulin sensitivity is one unit moves them 50 carbs, then a two unit cartridges of a Frezza moves them how far our

Michael Castagna 30:53
trials that we're doing. Now there's a conversion table and label series taken zero to four, whatever you just the numbers you just came up came up with with, if that said, you're going to take three units of injectable insulin, our label would say change that to a four unit cartridge. If whatever ratio you just did came out the six units of injectable insulin, our label would say convert to an eight unit cartridge, we have the only comes in for age well. And you can add those up in any four unit combination of the 48. And so we've shown up the 48 units, it's linear. And you can add a two fours to stick to eights, two twelves. It doesn't matter. You pick whatever dose you're trying to get at. And it's a two second inhalation and doesn't you know, some people have like 30 seconds on the you don't need to do that. And some of the people may cough or say it's irritating me, you know, it's really a low you don't breathe really hard. It's two kilopascals, which is very low. And you can see four year olds can do it up to eight year olds can do it. And we've shown that device works. People with lung disease, we use our technology and another disease for hypertension, your lungs. And those patients have compromised lungs and interstitial lung disease and they use our same technology, same active ingredient outside of the insulin. I mean, you have to be an active ingredient. Yeah. And so you know, we know that it doesn't take a lot of inhalation effort to get the right dose into the body. Right.

Scott Benner 32:07
So your inhaler has a patent on it, and you use it with other medications as well. Yes. So

Michael Castagna 32:13
we have a patent on FTTP. We are putting on the halo rear panel manufacturing process to all this

Scott Benner 32:20
is all patented, covered. Are you going to get hit with the the orange book problem that are no,

Michael Castagna 32:26
we're protecting these in the 2030s. So I feel pretty good about the next decade, I would say it would cost somebody about $500 million to duplicate our plan. And it'll probably take them seven years and a couple 100 employees to figure it out. Yeah,

Scott Benner 32:40
maybe not worth their while. Yeah,

Michael Castagna 32:43
it'd be very hard. I won't say impossible, because I think engineering can always figure things out. But it'd be very expensive. And I think with the cost of making the product and marketing and probably everything in cost. It's a very tough business. We lost money for 33 years in those past

Scott Benner 32:58
year. And I was talking specifically about just recently, the FTC told some of those GLP manufacturers, you can't patent the injector and to buy an extra, what is it 30 months on your patent? And that whole thing is playing out right now. But I was but you're but it sounds like your inhaler is specifically designed so that it takes a very low amount of effort to draw in is that the idea?

Michael Castagna 33:25
Yeah, and the inhaler is our platform, it's not an off the shelf platform. And people asked me, I said, look, the inhaler, our powers go together, meaning if I took someone else's powder and put it my inhaler may not fly this time, it may not work is good. And if I took another inhaler and put our powder in it, the same thing would happen. It may not work the same menu different dose. So it's not an easy modification, meaning you know, you'd have to learn how to use FTK P and you have to learn how to manufacture at scale.

Scott Benner 33:50
And my question doesn't fit here, then it sounds like your device is very specific for a reason. I think some of those other companies were just like, hey, say the injectors different. So we can hold on to our patent longer. I

Michael Castagna 34:00
haven't worked on biologics, we'd often change buttons, colors, volumes, all kinds of stuff to kind of just, you know, make the patient's body a little bit easier or a little bit clearer. But yeah, you know, the drug is the drug at the end of the day inside the injector.

Scott Benner 34:11
It's fascinating how you don't think about these little things like this is apropos of nothing but I know there was one company that they had an injector but when it was all the way drawn out to give yourself a big injection people's thumbs couldn't reach the plunger. And they didn't realize that till they gave them out to people. And then they were like, Oh my God, and then they had to go back and change. It's just it's so crazy. Some of the stuff that has to happen. The answer here is if you try a Frezza it's going to be a little bit of a science experiment for the first week while you figure it out. And but you're going to but it's interesting because when you're like if it says six the eight cartridges is good, I'm not gonna get low then it's just why

Michael Castagna 34:47
well think about your changing the route of administration. So it's something called the bioavailability of the product and what you really want is to get anytime I go from an injection to a patch or an oral pills to a to an injection, those those has always changed because the body breaks down drugs in different ways. And so when you think about a president, we don't have this first pass metabolism that goes through the liver, we get it in the body, and it's active permanent livers. So that, but you lose some of the product in the in the device, you lose some of the product that you know, through your back of your throat. And so we calculate all that in there. So as long as you're inhaling pretty consistently for yourself, you're gonna find that those the doses are pretty much the same, meaning how you inhale every single day, some people will heal very quickly, some people have long, slow, but that those, your body's gonna figure out the right that this is, this is what works for you. And you're gonna say, Okay, it's typically take this much down or 12. And so the inhalation variability, we actually have a Blue Hill device that's called Blue Hill, and it goes on the back of the inhale, and we show you how to properly inhale in the office. And so that's something we can show technique. If you're struggling a little bit, you think you're not doing it, right. Even our best employees who use the product for five years, we show we take into our lab, and we show them how, like, Oh, I've been inhaling wrong, or I've been healing for too long. And it doesn't really matter to you for too long, it's not going to change the kinetics. But it's really if you go too short, that's why I tell people just two seconds, like as long as you because I've seen that, that's not going to be the right the right way. And then

Scott Benner 36:13
you're getting some of it, not all of it right and up in your mouth and then just gone. It's

Michael Castagna 36:17
gone. It's because insulin doesn't work in the gut, right? So the gut deteriorates. That's why we have another drug that we're doing that if you inhale it, you swallow it, it's gonna have some activity from the part that you swallow, it will have some activity that goes directly into the lung, and of blood. And so that's, that's more complicated drug development than insulin, which generally comes in there.

Scott Benner 36:34
So you said the the inhale, one study is almost finished, or is that your your right to present data,

Michael Castagna 36:40
we have two trials coming out, we started inhale one a couple of years ago, that's in kids. That's why it was one. And then the inhale, three study is an adult. And the reason we did three was its receiver of present and Dexcom. So we're trying to say, hey, here's a free tools you need in health rate. And in that study, we wanted to show that you could safely switch off an ad system or a regular pump, or multiple daily injections. And maintain control was the primary goal to study. And so it wasn't to show that it was better It wasn't to to show a better time and range. The main thing is everyone believes, right that AI D is the best system out there for you as a human being, or your child. And we want to show that you could safely choose an alternative and that doctors should be providing more choice to patients. So we've gone head to head against multiple daily injections in our trials, that's really shown behind what people perceive pumps to be a little bit better. And so that's what we wanted to be able to show that were as good as the standard of care that's out there. Kind of how you define it, you may define as multiple injections, you may define it as an ad system. And so we wanted to show you how you could convert from either process to maintain control and hopefully so

Scott Benner 37:50
what is control mean, what what do you mean, if I asked you what a one C and what variability could I maintain with with the Frezza? Do you have like an answer for that.

Michael Castagna 38:01
So our goal was to maintain a onesie. And we also looked at timing ranges, secondary analysis, so you can see, you know, whether you want it whether your goal is below seven 7.4, I think that's something we do in societies, we say, Oh, you need to be below seven. Well, the reality is 75% of people on insulin are not below seven. They may be personally okay with a 7.5, they may be fine with an 8.5. I've interviewed patients who say, Hey, I like my Starbucks every day. I like my food, and that's my life. And that's my choice. And I have to respect that. Right. And I think that's somewhat challenging from a clinical perspective, when else decide because you gotta get the goal. And you're, and you're failing, if you're not, and I think we don't we don't we got to accept people's choices. And so in this trial, can

Scott Benner 38:41
you give me a second, do you think a person who would categorize themselves like that as, hey, I have an eight, five, but I eat the way I eat? Would they do better with a Frezza?

Michael Castagna 38:49
I think if you dose your insulin properly, you can always do better. And I would say that with injectable insulin or inhaled insulin, right? It's about getting your Basal ratio, right. It's about getting your mealtime coverage, right. And, you know, remember, all you have is a deficiency of insulin, a normal healthy person, right, can eat whatever they want, and their body corrects it. So I just believe you got to just give the right insulin dose and it's harder with injectable insulin because it's less predictable, the further you go out. And that's what makes it harder with a president you just get that little bit more near term predictable. Maybe gotta give a second dose of a big meal two or three hours later, because you see your sugars are still 261 to bring them down to 150. So it just gives you a different tool to rethink about how you define control or how you want to be in control.

Scott Benner 39:33
So would it be fair to say that injectable or insulin through a pump is a game you're playing in like this four to six hour window, but with a Frezza. The window is more like 45 minutes to two hours, two hours. And so if I shorten the window, then I can decide if I need more insulin faster and not be worried about like a late and low later. So it's not necessarily that with a Frezza, I'm gonna see fewer spikes or even less spikes if I'm or less aggressive excursions, if I'm using it incorrectly, it's more about how I can come back at it again and again and again, and the profile short and it comes out of my body quickly.

Michael Castagna 40:18
So we would say our data would show you, if you were to use it at the right dose right up front, you would have lower peaks, your glucose excursions might be 40 to 60, instead of 90 to 100. So we would lower the excursion a lot. And we think those peaks have caused a lot of damage. Right. And so we do think reducing those peaks over time. As you know, we haven't been able to show that in clinical trials, nor have we tried in fairness, but but there's data out there talking about that, right. And so we do know, we work roughly 3040 minutes faster, and you can lower your peaks by 3040 20 points.

Scott Benner 40:51
So I still can Pre-Bolus with the President. I should retiming.

Michael Castagna 40:55
Yeah, I mean, why would you just take when your food comes, because what you're trying to do is suppress your endogenous glucose production. And the faster you can do that, and it doesn't really start to until you start smelling the food and everything right, then it starts producing pickoff.

Scott Benner 41:07
Oh, I see. So putting it in 15 minutes early wouldn't help me. No, you shouldn't do that. No, okay. Because

Michael Castagna 41:13
it works fast, right? So if you don't, then God forbid, you don't need for 15 more minutes, then you're gonna go home, be upset and be really soon as your food shows up. That's the most important part. You don't have to worry about guests hurry. You know, people say, Oh, I missed my, I forgot my insulin in my car or something. You know, as soon as you get back to your car, you get your insulin, you can take it no, it's going to kick in an hour. That's important.

Scott Benner 41:33
I feel like I cut you off earlier. I'm sorry. Like, so what's the what's in a one seat goal? Like in your label? What what do you expect that I

Michael Castagna 41:41
was gonna say is in this trial in particular, and then he'll three we lead 25% of the people in the trial, who had less than a seven a one C, which we've never really studied? The people doing the best, right? And could they maintain that control? versus those that aren't doing well? And can you maintain or improve their control? And so you know, that's this is the first time in one of our trials where we took people that were doing fairly pretty well. And the question was, would they stay there? Would they get worse when they get better? That have results aren't out yet. So I can't say too much. But just know when when people do see the results, we went down as low as 6.5 and 6.0. A once these always high as nine and 10. When I think about those people, the people that probably are nine and 10 aren't taking their insulin. And whether they take inhaled insulin ready to take your pump or they take them. Yeah, they're just not complying in many cases. Right. And when some people just don't have the right dosing, right Basal ratio? Yeah, I think that's another thing to pay attention to is, you know, traditionally, in type one, you're told that the percent your insulin units a day should come from basil and roughly 50% should come from bolusing. I think as we get to a Frezza, because of this higher dose conversion, roughly 70% of your Bolus units are going to come from your, your inhaled insulin 30% company or Basal when you get to your titrate try to get those. So I think that's what we're trying to get give you as goalposts, like, Hey, I was talking to a priest once about us, put on a friend and he was struggling. And I think as basil was, like 10%. And I said, I said, I can't tell you what to do. But I can tell you, your ratio is way off, you should go back and talk to your doctor. Right. And and I think that's, that's important. Well,

Scott Benner 43:12
I make a living telling people that it's timing and amount, this podcast is incredibly popular, because all I say about insulin is that if you use the right amount at the right time, and balance it against the impact of your foods, there's actually almost no reason to see an excursion whatsoever, but it's just a difficult thing to do over and over and over again, it takes a lot of effort. Let me ask you this. And I know it's not a label thing or something that companies but do you know anybody personally using a friend who has anyone seen the fives? Oh, yeah, yeah. Oh, you Okay, all right.

Michael Castagna 43:43
No, but I know that many of our best patients right are 545758 they compete. I always tell people look, the data out there less than seven is, you know, whether you're 6.5 5.5 Don't, don't stress yourself out trying to get the lowest a one C. But but stress yourself out trying to get below seven if you can, because that's where the damage is really occurring.

Scott Benner 44:03
Are there other things you're accomplishing that with you personally? Like? Are you on a low carb diet or something like that? No, no,

Michael Castagna 44:09
I mean, if you saw my lifestyle, right, I eat out a lot for work. I travel I have a Starbucks every morning. And so, you know, when I try to express to people, you know, I have my sugars were way out of control, right? I'm sure I eat a lot differently. But I feel like I have tools in my bag that helped me maintain good control. And so I do not stress over what I eat as much. And so that's that's something that I think a lot of people do stress over what they try and maintain low carb diets. So to say all I can't take that too high of a dose. I've seen our data, I mean, people are coming in to whether it's our arm or the control arm, they're coming into these trials 170 Premium 180 pre meal, you're so far from going low, that you have a long ways to go. So I tell people, right and these are patients come in our trials are out of control. And so I think about that, you know, what are you doing to get your Basal dose right, what are you doing to Get your mealtime dose, right? Because you should be coming into meal at 120 100. And whatever you can think about your postprandial spike, let's say you only go 40 points, you're at 110. Well, you're gonna be time and range all day long, right. And instead what happens is people are 170, they're afraid to go low, and to go on to 290. And two hours later before the insulin kicks in, then a good man to take another call center go on the 60. And then they eat a bunch and they go back up to 190 200. And so you're just this Yo yo, all day long. And it's very frustrating when it's out of whack.

Scott Benner 45:28
I'll never forget the first time somebody came to me and said, Look, you know, my blood sugar's 180? Should I still Pre-Bolus? I said, it's not a Pre-Bolus that one ad, it's a correction. And then you have this conversation, right? And this is how I tell people, I'm like, Look, you know, a person over here without diabetes, they're standing here before lunch, their blood sugar is probably 85, it's probably 90, you're 90 points higher to them asking me Do you think I'll go low? If i Pre-Bolus, 10 minutes before I eat up? Like, you should correct the 180 You should Pre-Bolus your food. And you know, like that you're correcting right now and eating at the same time. It's, it's, I mean, I tell people all the time, like if you if you said to me, You have one minute, you're about to leave the planet, what are you going to tell people with type one diabetes, I'd say it's timing and amount, just use the right amounts on the right time. That's it.

Michael Castagna 46:18
And if you look at a president's profile to a natural human insulin profile, we're the closest insulin out there to what your body naturally done. Right? Now, right, it peaks in 30 to 60 minutes, right, and it's out of your body in two hours. And people don't realize that, you know, most meals are cleared within two hours. And so they think, oh, dinner, lunch breakfast, I just looked at all our data, the doses don't actually change too much by breakfast, lunch, and dinner. In fact, what I always tell our patients is the make sure you get your dose right before you go to bed. Meaning if you have a big dinner and you don't take enough, then you're going to bed at 190 200. Now figure out if you can take a foreign aid, whatever is gonna bring you down closer to 100 while you're sleeping, because within your ticket, those are the 30 before you go to bed an hour later, check it to see where you are. Because if you go to bed normal, you wake up normal, you go to bed, how you're waking up, hi, yeah,

Scott Benner 47:08
especially with yours, because once I go to sleep, it's not like I'm gonna go into hell more. Whereas like my daughter, she's an Iaps. Right? Now she goes to bed high, it's gonna keep working her down overnight, what do I do in a high fat meal situation, do I have to a Frezza, wait two hours and then see that next rise from the fat and hit it again,

Michael Castagna 47:28
I said scientifically, we should do is take whatever dose you thought would cover that, that meal you're taking, and, you know, multiply by two and run now, which is what we're doing our trials. And that should cover the whole meal.

Scott Benner 47:40
So I can put in enough for the carbs and the fat rise in one shot, you could

Michael Castagna 47:46
take it right up front, okay, and you know, make it up. Because normally your body would just release more insulin on that on that bigger meal, right? Sure. And so you would take more insulin up front. And then when you do that, if present has a longer curve, right, the more you take, the higher goes the longer it list. And so you know, for I'll make it up as they all work about the same speed, they come out of your body at different times, right. So for you, it'll be done in about 35 minutes at 12pm Peak effect in 45 minutes, that's out of your body within 180. So if you're going to have this big meal, you're going to be 16 to 20 units a meal. And that's just going to cover you for the full 234 hours. Now I'll say that's the science, the reality as a human is, I'm going to worry the whole time and I'm probably going to underdose. And therefore I just say see, we're sugars aren't one hour, and those again, if you need to, or two hours, okay? And but the bigger dose you give up front, the better, you're going to shut down that endogenous glucose production. And that's what people don't quite understand. Because injected ones that just doesn't do that that fast. But if you can shut down that liver, you're shutting down the signaling pathway that's causing this huge rise, I say and the faster you do that, the better control you have. Because

Scott Benner 48:49
you're working with type twos. Will Will there be us that I'm spending your money over here? But Will there be a study with people using GRPs? I

Michael Castagna 48:57
don't know. I mean, we redirected our focus to type one diabetes. That's why you've seen us in kids with adults, pumps, you know, this is what we're focused on going forward, we are looking to bring your presence to the rest of the population around the world. So we will hopefully be in India by next year, Brazil, and us that's about a third of the world's diabetes population. And then we're gonna be going to Europe, China, and Asia and Australia. So we think that over time, you're gonna see it now be global, which is great for society, the GLP has worked pretty well. And so that doesn't mean that they're not delaying the use of insulin or you still need insulin I do think we're going to see in the long run, but everyone can tolerate GLP or eventually they were and you were talking about long term safety earlier about these things. It's funny because I I I tried to Olympic at one point and I just did not feel well. I started wondering like, Okay, what's the date on these things long term? So I called one of the manufacturers I won't say who? And they said oh, we haven't studied to be on two years. What do you mean you want me to take this for the rest of my life? So what will happen when a person stopped taking and what did they wants to do with their waking go back? We don't have any that they don't people discontinue we only people do. After the trial and followed up, so there is no when we asked me what inhaled insulin I can tell you, we studied it for two years non stop, we looked at I think they only have one year data on this one drug. And I'm like, and so now it's been in the market 10 years. So we feel pretty good about our profile. We're GLP is are still, you know, they've been around 20 years in fairness. Yeah. But using them for long term weight loss. And these other things. I think once

Scott Benner 50:22
they're really popular right now, we're thinking about like, the Stata. Right, right. Exactly the stuff that the you're shooting every day at one point right now it's all a crapshoot, I, I've lost 47 pounds on a GLP in the last 14 months. And thank you fundamentally changed my life. That's fantastic. My daughter's using it, it decreased her. I, my math tells me that my daughter will use 16,000 fewer units of insulin over the next year, because of a small dose of a GLP. Like, that's crazy, right? But I'm just I'm wondering about that. Because as you're talking, I'm thinking, there's obviously is obviously a population for inhaled insulin, like, obviously, and so you're gonna make it available for children. At some point, FDA is gonna say yes, it sounds like and then that's going to be another group of people who can try it. Now we're looking at people who might inject basil, do the inhaled, etc. so on then, but then people are going to hack it along the way. There's already people micro dosing GLP is, and like, so like, you're gonna I just was wondering, like, what happens once you really lower my insulin need, with a GLP, I have Basal insulin running in the background, and then I hit a meal with this, like, it's just, it's gonna be interesting to see what people do with it, and what doctors prescribe it. To

Michael Castagna 51:45
your point, you know, the kids, they don't will, this trial is fully enrolled. So the pace less patient will pull here in September, October timeframe will crunch the data in the fall. So we'll know on pediatrics very shortly. And hopefully, it looks good. And we'll file that with FDA next year, the inhale three results will we'll try to get will debate whether it goes up to now or later to try to change some things in the label around the conversion chart. But otherwise, to your point, you know, our job is to make people aware of the science, the safety and efficacy of the product. And we didn't have much money in the last seven years to fund a lot of that stuff. Now we have, okay, and so that's what I think you'll start to see nothing but new data. Now we got 30, we trial 17 weeks, primary endpoint 30 weeks of follow up coming out next year, you're gonna have keys, which will be a 52 week study and 26 weeks as a primary endpoint. And then we're just approving a gestational study that we'll look at friends use and gestational diabetes, and PK PD and make sure women can inhale properly, their diaphragm and all that you're seeing us invest more as we go forward. And we're not backing down from where we've been. I think this is a useful tool. And to your point. GLP has definitely reduced the need for insulin. But I can tell you looking at the National insulin statistics, the market stopped growing, but it's not shrinking. You know, more people have diabetes in the future, more people need insulin, you always know there's a seven to 10 year delay in type two now, maybe 11, or 12. Who knows? Eventually, we're gonna need insulin for patients. And honestly, if we can lose weight and use less insulin in society better off health wise, we're all federal, right? Yeah.

Scott Benner 53:16
So that's faster. It's fantastic. I appreciate you coming on doing this with me. I really do. I have to jump off. I apologize. I'm short on time, which is not usually what happens because I make a podcast that usually just I'm like I can keep talking. Maybe we can get back together and and learn some more again, I actually have some of your users like lined up this year to be guests. People are very excited to talk about it. So there'll be some of that there. But I really do appreciate you taking the time. Real quickly am I going to see problems getting it covered by my insurance? If I have type one, just

Michael Castagna 53:49
about say a scar? Don't let me leave it I'll talk about access. So generally, if you're type one, you're in a better position, then type two is because the insurance company wants to know you tried and failed their preferred agent. And failed means you could have hypo means you could anyone see could be 7.2. Right? So the failure definition is quite broad. And we've created a program that as long as you go through our pharmacy and reimbursement support, if it's not approved, for whatever reason we charge $99 a month, or $3 a day. So I've tried to take the excess burden off of society and say, people should have access to insulin. We think $3 A day less than a Starbucks these days with inflation is a fair price. Or it can I guess most states, and so that's where we are as a company. That's our position our policy and if anyone has any problems, they can feel free to reach out to me and I'll make sure we take care of them. But we want as many people have access to the product. We will work with insurance companies to make this happen.

Scott Benner 54:40
And it's fantastic. Thank you very much. Thank you

a huge thank you to one of today's sponsors, G voc glucagon, find out more about Chivo Capo pen at G voc glucagon.com Ford slash Juicebox Podcast spell that GVOKEGLUC AG o n.com. Forward slash juicebox. I want to thank the ever since CGM for sponsoring this episode of The Juicebox Podcast and invite you to go to ever since cgm.com/juicebox. To learn more about this terrific device, you can head over now and just absorb everything that the website has to offer. And that way you'll know if ever sense feels right for you. Ever since cgm.com/juice box Arden has been getting her diabetes supplies from us med for three years, you can as well us med.com/juice box or call 888-721-1514 My thanks to us med for sponsoring this episode. And for being longtime sponsors of the Juicebox Podcast. There are links in the show notes and links at juicebox podcast.com to us Med and all of the sponsors. If you are a loved one was just diagnosed with type one diabetes, and you're looking for some fresh perspective. The bold beginning series from the Juicebox Podcast is a terrific place to start. That series is with myself and Jenny Smith. Jenny is a CDC es a registered dietitian and a type one for over 35 years. And in the bowl beginning series Jenny and I are going to answer the questions that most people have after a type one diabetes diagnosis. The series begins at episode 698 In your podcast player, or you can go to juicebox podcast.com. And click on bold beginnings in the menu. I know that Facebook has a bad reputation. But please give the private Facebook group for the Juicebox Podcast. A healthy once over Juicebox Podcast type one diabetes. The group now has 47,000 members in it, it gets 150 new members a day. It is completely free. And at the very least you can watch other people talk about diabetes, and everybody is welcome type one type two gestational loved ones, everyone is welcome. Go up into the feature tab of the private Facebook group. And there you'll see lists upon lists of all of the management series that are available to you for free in the Juicebox Podcast, becoming a member of that group. I really think it will help you it will at least give you community you'll be able to kind of lurk around see what people are talking about. Pick up some tips and tricks. Maybe you can ask a question or offer some help Juicebox Podcast type one diabetes on Facebook. The episode you just heard was professionally edited by wrong way recording. Wrong way recording.com. If you're not already subscribed or following in your favorite audio app, please take the time now to do that. It really helps the show and get those automatic downloads set up so you never miss an episode. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

---

Please support the sponsors

The Juicebox Podcast is a free show, but if you'd like to support the podcast directly, you can make a gift here. Recent donations were used to pay for podcast hosting fees. Thank you to all who have sent 5, 10 and 20 dollars!

Donate