Scott Benner 7/6/23 Scott Benner 7/6/23

#947 Serious Inquiries Only

Rags has had type 1 diabetes since he was one year old.

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

Scott Benner 0:00
Hello friends and welcome to episode 947 of the Juicebox Podcast

my guest today has had type one diabetes since he was a year old. We're going to talk a lot about kidney disease, transplants, and type one diabetes. While you're listening. Please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan for becoming bold with insulin. If you're looking to save 35% on clothing, towels, or bedding, go to cozy earth.com and use the offer code juice box at checkout. If you'd like to get a free year supply of vitamin D and five free travel packs with your first order of ag one you can do that with my link. Drink ag one.com forward slash juice box looking for community around type one diabetes check out Juicebox Podcast type one diabetes on Facebook. What else? Huh? Gotta be something else. No, check out the diabetes Pro Tip series begins at episode 210 In your podcast player. Speaking of podcast players, Have you followed or subscribed? Please do. This episode of The Juicebox Podcast is sponsored by Dexcom makers of the Dexcom G seven continuous glucose monitoring system. Arden is wearing the Dexcom G seven right now it is tiny it is easy to use and it's accurate you're gonna love it dexcom.com forward slash juicebox Oh, you know what else about that? Dexcom I just read a headline today that says Dexcom g7 receives Health Canada approval. Congratulations Canada. Happy Canada Day. Wait that's actually a holiday there. Nevermind. today's podcast is also sponsored by the contour next gen blood glucose meter contour next.com forward slash juicebox. You can get the same meter Arden has or a number of other accurate meters from contour all at my link contour next one.com forward slash juicebox links in the show notes. Links at Juicebox Podcast. I can't it's late at night. I'm punchy sorry.

Ragnar 2:29
My name is Ragnar. But most people call me rags. 52 years old. diagnosed when I was a year old. I live in Hawthorne, California. We just been here about a year. I grew up in Manhattan, Sausalito and Manhattan Beach. And that's about it.

Scott Benner 2:47
Wow. Do me a favor. Don't let that microphone on that wire touch something. Okay. Okay. You were tagging us when you were a year old? Yeah. 51 years ago? Yeah. Oh, my. All right. Well, we got stuff to talk about them. So I'm assuming you don't remember anything about being noticed?

Ragnar 3:08
No, I just know I've been diabetic the whole time. So my mom, I got the story. My mom. My mom was dropping me off at daycare. And I kept getting strep throat all the time. And so she finally went to the hospital have me checked out. And they did a couple of tests. And they said, Oh, we have diabetes. And my parents were like, well with fat. And then my dad called one of his friends. Dr. Kroll white, who's a friend of his from Michigan. My dad said, Well, what's diabetes and he kind of told them that he has high blood sugar. And that was kind of about it. So they were given an orange and did a couple of shots in the orange and then they said There you go. Good luck. We'll talk to you soon. about it.

Scott Benner 3:54
You changed my thought all of a sudden, you're still you're alive. I must work

Ragnar 3:59
out okay. Yeah, it was I was put on a regular insulin and lintec insulin at the time in 1970. And that was what was done two shots a day. You're not testing my mum would wake me up in the middle of night and test my urine which we know now nothing but at the time that she she thought that was the best thing to do. They won't give me any any tools like you guys have today. But

Scott Benner 4:25
your mom your mom would wake you every night like every night

Ragnar 4:29
test my pee pee in a cup or light I don't know how it worked. I have no idea. Or you know if I was one I was probably just peeing regardless hit me up and just try to get me to pee.

Scott Benner 4:41
She must have been she must have been so concerned. You know? Oh, yeah. Just

Ragnar 4:45
just like all the parents are today that we are on the Facebook group and you know, we hear it's the same same amount of fear and anxiety and all that stuff that will show tools.

Scott Benner 4:56
Yeah, no, exactly. No, she was just scrambling to get any kind of data that she could probably just to make herself feel comfortable, you know, before we move forward, you want me to call your eggs? Yeah, yeah. Before we move forward, Rex, I have to tell you how disappointed I am in myself that I am 51 years old. And yet I started to, like, I have a little whiteboard here. And I started to let go, I was like, I'm gonna subtract, you know, 2022 from 52. And then And then you said 1970, and I thought, oh, yeah, the Europe before I was born, because He's a year older than me. Really? I can't tell you how disappointed I was.

Ragnar 5:37
Minute can use that. That's still our math you always have. So

Scott Benner 5:40
I just I really just thought for a second I thought, stop just you know, and the recording. It's over here an idiot. Oh. My goodness. So are your parents around still?

Ragnar 5:53
Yeah, they are. My my, my mom was five miles from and my dad lives in Venice Beach, California. So they're both here. So that thank God for that. I'm really grateful for that. So

Scott Benner 6:03
how much of the because I imagine you transition through a number of different care, you know, yeah, management systems through the years. What age do you think your parents stopped knowing about your diabetes care?

Ragnar 6:22
Probably after my triadic, kidney, pancreas transplant, so probably after my transplant, when I started doing, you know, the pump thing, and and then it's so interesting to loop. So they don't quite understand the loop and the pump thing, then they don't really have an idea, but they know that I do that thing. And they know, I know how to do this new thing. And my dad thinks he you know, he tries to understand what loop is, but it's just too hard to explain. And he's kind of he knows to take care of myself. And that's Yeah, after college I pretty Yeah. After college pretty much take care of myself.

Scott Benner 6:57
Yeah, your mom didn't come up to you, like when your 30s and ask you to pay on something or anything like that.

Ragnar 7:01
No, but she always says she'll read you. How are you? And then that means how is your diabetes net? How are you? So I finally got to a point like, you want to ask you about how I'm doing well, you want to know how I am how my diabetes is doing. So he finally got off the bat. She also say hey, right radio your low right now, you know, she can tell him a little everyone can tell him well, before I'm low. Even my dad, some will say I'm low on them. But my wife and my mom can both tell them well, so

Scott Benner 7:32
well. So let's figure this out a little bit. So yeah, you had a double transplant. How long ago?

Ragnar 7:37
That was a 1990. Was that? No 19? No, no, that wasn't that wasn't 1997 I mean, first, kidney transplant 1990. And then I had my kidney, pancreas and at 97. That lasted quite a long time. So okay, that was nice not to be dead, that have diabetes anymore.

Scott Benner 7:57
And so, okay, well, hold on. There's a lot here. So, yeah, there's a lot here for sure. So you made it basically 20 years before you needed kidneys. Yeah. All right. And that entire 20 year time you're managing in a way that mostly people don't do anymore.

Ragnar 8:13
Yeah, I was doing. So I did the regular lactate for a long time. Then I went to diabetic camp. There's commando camp when I was like six. And I learned a lot there. My whole life. I learned everything. diabetes camp, because we had to go up to the table to you go to stand in line, the doctor would tell you what insulin to do. But I remember when I was sick, this doctor named we called her doc asked me what I thought I should do for my insulin. So I was like, Well, you know, I said some number. And she's like, Well, no, this kind of goes back quite a bit. So you go to the shot line and get your insulin that you had to get, and you would get your shot line and wait about a half an hour before you can go to breakfast. So that was their Pre-Bolus. And without knowing I was Pre-Bolus. And at the time. And so yeah, so did that. The regular lens, hey, and then and then when I was in high school, I had a lot of difficult times in high school because it was just kind of shooting darts in a dark, dark room and hopefully you hit the board. But he and I have insulin reactions at school and waking up in an ambulance and that kind of stuff went on for me.

Scott Benner 9:20
So there's there's no real I don't know what the word is I'm looking for. I was gonna say method. But that was the method but there was it was either working or it wasn't working. The goal was just for you not to die today. Is that pretty much right?

Ragnar 9:34
I think so that was pretty much the idea. You know, and I had a couple of close calls there. One time I had a really bad insulin reaction and seizure. And my dad tried doing the glucagon thing with a needle and that thing and all the needles broke up the needle broken. And my dad called the paramedics and the paramedics came and the story was one guy Lance happened to be behind because the rig in the paramedics truck are out and he grabbed the ambulance. It's from the, from the ambulance bear. And he came and kind of saved my life. He told me I was asked for eating. So I mean, my dad put orange juice down my mouth, and all this other stuff. And I was choking on my own on the fluid. So the guy turned me upside down. And so my round and they brought me to a half. So it's a whole big, the big deal was in the hospital and stuff like that. So if you're someone seizing and can't really control their fluid, don't put orange juice down their mouth because they can go do a thing called aspirate. Yeah. Which fluids gets in the lungs, and it's a it's a mess.

Scott Benner 10:33
What, um, how many times? Do you think that happened to you? Like some, some version of like, being that low?

Ragnar 10:40
Quite a bit for me, I can't even have a number for you. That was a lot. Okay. Yeah, I see. I, you know, you know, enough that that kids knew that I was at high school knew I was diabetic, you know, like, enough, but not enough. They also just treated me like a normal kid too. But I had I had situations and in school where I had, you know, then I was doing blood sugar tests by the, you know, so at the age of so, I think at the age of 10. At diabetes camp we did we did blood sugar tests for the first time with the guillotine. Sugar test, you put the thing on the strip and wait two minutes, not five seconds, but wait two minutes, and then wipe it off. wait another minute. Took a long time to do a blood sugar test.

Scott Benner 11:25
Jenny. Jenny was just telling me about the guillotine. pokers the other day while we were recording, it's funny you brought that up?

Ragnar 11:34
Yeah, it was just like it was you know, it was scary. But you had to do it needed to really squeeze your finger and just you know, but not looking now. So I need to do a blood sugar test. And like, no problem. What five seconds? Got it?

Scott Benner 11:47
Just seems real easy.

Ragnar 11:49
Yeah, like, that's great. You know, and then and then I had my, so I had Mike. So I so in college, I was cycling, I was playing water polo and Psych and bike racing. And the doctor at the time was new doctor, Dr. Mary Simon. And she said, let's try this thing called Ultra Lanti. So at that time, at camp, I was a camp counselor as in charge of the sports program or something I can't remember. But so we spent an entire summer like three months trying to figure out my ultra latte dose. And that was, to me the best control I've ever had. I mean, at the time was the best control I had. I was probably doing like 10 to 20 blood sugar tests glucose just a day. And then I would just do a little shots of regular the whole time, you know, fast acting, yeah, quote unquote, fast acting insulin. And that was really good control at the time, but I was still doing blood sugar tests all the time. And and it was still kind of a shot in the dark because you just get that moment of that whatever your blood sugar is, at that time was like a blood sugar is there was no like forward thing of Oh, yeah, I'm gonna I'm dropping dropping down later. I'm like, okay.

Scott Benner 12:54
We did a. Yesterday, Arden had a her pump site went bad. But she hadn't eaten all morning. So we kind of didn't know, because it was able to hold on. It was hold her her nice and steady without food, right. And so I started she's a college, I started looking at thinking, Well, I hope she changes this pump before. You know, before she eats. And she went to class and came back. And I guess she thought, well, let me try to like get one more Bolus out of this thing. And she put her insulin in. And it was just from there. It was just a slow climb. Like just it was happening. It was 9095 100. I was like, this is not working, you know, so I texted her and I said, Hey, I think this pot is shot. You know, like, I think he gotta get away from it. And she's like, well, after I do this, and this, I'll look at it as I go. Okay. So that turned into, like, the highest blood sugar she's had in a long time, you know, and so I'm telling you, she was like, 300. And I was like, I didn't listen. I know, like, you gotta change the pod now. And she's like, Okay, I will, I will. But it took her like four hours to do it. Right. And then she did it. And I said, okay, like, Would you like some help getting this blood sugar down? Because it's a new pump. It's not going to work as well as you expect. And she's like, Yeah, okay. And so my car, right? I'm like, I'm asking you a lot of consent all of a sudden. Right? Right. And, um, and I, you know, I'm taking that from stories. You know, in my own life, where I've, I've looked at Arden and seen her like diabetes before. I've seen her learn from people, like you just told me like, you know, your mom only asks how your diabetes is not used. So I'm like, so she says, okay, you know, like, give me a hand here. I said, Okay, well, she's looping. I said, open the loop up. I said, let's get a nice stable, a basil going. And I said, and let's make a Bolus like this. You know, so we put the Bolus in. And she went to class in the afternoon, and I texted her and I said, I'm going to help you watch this because I know you're in class, but there's going to be a moment where we're going to have to close the loop and try to catch it. So We got to a spot where we did. And it almost worked. You know what I mean? Like it was like it was coming down, coming down and then boom, we close. We opened the loop up, let the loop work. It took the basil way. And I don't know how this happened. But it ended up where she was 70 Right when she got to dinner. Oh, it was like the dumbest luck. You know what I mean? Like she had don't get me wrong. She's stuff with her. So like, I'm texting her. And I'm like, Hey, listen, why don't we slow this down a little bit with a couple of gummy bears or whatever you have on you. Like, you know, I know you're going to dinner but like, let's just throw something in here. Well, she didn't respond to me. Which, which I now know means I disagree with you. So, so she got herself, you know, but she knew she had to walk back to her room. So I was a little like, I don't want her walking while she's falling. And you know, and I'll tell you what I do. For my own comfort, is that I, I use Find My iPhone. So we all have iPhones. It's one of the things that my kids know, like, if you want to own an iPhone, and you think I'm gonna pay for it, I need to be able to see where the phone is. And so like, I could see her walking back to where she was going for food. I knew she was in the cafeteria when her blood sugar got to 70 but it was still dropping really slowly. Right? And this girl like boluses like you don't I mean, like she, she puts her she puts it in, but it's loop and she's now at 65 It's not going to Bolus for and, and you know, so I'm like, I'm trying not to freak out. Right? You know what I mean? Like, I know, yeah, I know. I can see she's where the food is. She's She I know, she sees my text. I know, she understands what's happening. And And finally, I can tell she ate because she leveled out. And then I said you should put in the suggested insulin now because it's not going to Bolus till it gets above the cutoff, which I think we have set at like 66 or something like that. Right. And and she's and she didn't answer me. But I could see on Nightscout that she put the Bolus said. And it was amazing. She went up like 145 and leveled out and was good on 99 all night long, like really fantastic. But all that's only possible because of the data and the communication and the technology. And I'm imagining you and you were in this very same situation every day your life. You mean you didn't know it. So

Ragnar 17:32
here's so here's a fun time I was at school at college, I was at California State University Chico and I knew of electric was largely a test I was low. So I was like make myself a peanut butter and jelly sandwich at the time, which is a good thing to have a jelly gets you up and the bread kind of keeps a medium and a peanut butter lasts a long time. So like I have PBJ it's good chance. So also on the phone rings. So all those younger people out there, just have a tie on the phone. So you know it'd be a cord and phone would only reach so far. So my mom is on the phone. So hi, mom, Baba. Oh, hi, ready? You sound kind of low. Yeah. And I'm taking care of it. So I'm trying to make the rest of the peanut butter and jelly sandwich but the phone doesn't quite reach in my hands. I can't quite reach the finish making the peanut butter jelly sandwich. So like mama, you know, I'm you know, but I didn't know how to swim. I'm here. I'm low media for phone. But I would do today. But then I'm like, oh, keep talking all sudden in the background here. Oops. I said we had two phone lines at the time said Mom Did you call the fire department? Yeah, honey it because you set it really low.

Scott Benner 18:37
So at the same time protecting you and keeping you from eating.

Ragnar 18:42
So my mom says my stepdad norm called the ambulance on the line. So I gotta go. Clean up the phone. Man. If eating the sandwich was pretty low by the time those guys showed up. So come in the house. So yeah, give me some I had some sugar. So can I send the AMA which is against medical advice? Like yeah, sure. So they sent I sent to me and they left but it's still it's just like, back then if my mom had the Dexcom she could assume no, I was low. I was taking him taking care of it. Like you know, that had been a different story. But back then it was just you know, find my voice. Well, yeah,

Scott Benner 19:21
this whole story seems like a humble brag that you had two phone lines growing up in your house. Yeah.

Ragnar 19:28
I know. And so that was that was a good thing. It's probably

Scott Benner 19:31
people listening would have no idea what a big deal that was that you had two different phone numbers. Yeah, yeah, it's funny. Yeah, exactly. Yeah. So I just think that I just don't know like while you're talking I just imagine how often your blood sugar was up and dropping and and because you were using insulin that didn't work as rapidly. The lows the lows were bad, and they would get you eventually but it took longer to get to it whereas now with a faster I can get So if you're, you know, if you're 6055 50, you're gonna be 30 in 10 minutes if you're falling back, you know, so your falls were slower sometimes. But

Ragnar 20:12
yeah, so that wasn't that wasn't 1990. So I was using that human log man. Oh, boy. Yeah. So you're dropping fast, you know, you're dropping fast. So you like you're shaking? You know? There. Yeah. Couldn't talk, you know, your printer. Hey, could you use some sugar? Like, yes. Help me out. So,

Scott Benner 20:33
in that, in that first 20 years, do you have any idea that you're going to have health problems? Or do you feel like you're doing well?

Ragnar 20:40
Well, no, I, my thing was I had, so my kidney disease came from streptococcal glomerular nephritis, which is a big word for strep throat causes late and kidney disease. So I had strep throat when I was a baby. And then I didn't show any signs of kidney dysfunction child was like 13. So the diabetes and caused my my kidney failure, but it didn't help it. Put it that way,

Scott Benner 21:02
right. Oh, no. Okay. Well, that's I was gonna Google that, but I got lost. So

Ragnar 21:06
yeah, yeah, streptococcal. It's really hard to start since streptococcal glomerulonephritis. So it's strep throat and the glomerular is this functional unit of the kidney, and is a swelling of that functional unit of the kidney. So that's very causes. So if you don't treat strep throat aggressively, like they did back in the 1970s 60s, late 60s, early 70s, then you have this latent kidney thing. Whereas today, if that happens, the right arm via strep throat, like right away, because I don't want people to have kidney disease,

Scott Benner 21:39
PSTN is what they call it. Yeah, a rare complication. A rare complication from a prior group. A strep infection is a kidney disease that can develop after infections caused by bacteria called a streptococcus. How about that? Well, that's some crappy luck. Oh, no kidding. So what's the first sign you have? That your kidneys aren't functioning?

Ragnar 22:02
I'm just the doctor. I did blood tests, you know, like to see the endocrinologist, you know, his name is Dr. Phil from and he since passed, but he was a great doctor. And so it all looks like your kidney is, you know, kidneys aren't working that well. And I have to go see this doctor. I'm like, okay, you know, and that's how they did it by blood tests. And so, so it's the same type of thing. I have, you know, creatine of 1.2, which is a little high. You know, it's like a blood sugar of 130. Kinda like, you know, and then, and then it goes back down to like, my thing, I'd go back down to point number like 2.5, which back to a blood sugar 100. And then I kind of bounced up and down, up and down, and they couldn't figure it out. So I saw a special special doctor, Dr. Gabriel Janowicz, at UCLA Medical Center, and that's his only pediatric patient and he determined that there's the strep throat, the, the streptococcal glomerulonephritis, that causes my kidney would go up and down, up and down, up and down. So when I was 21, in college, I had my first kidney transplant. So my, my dad gave me candy, which is wonderful. And so all my friends, but you know, they arrested you for what you do for you know, winter break, because in college at my school, we had six week winter breaks, you know, guys went to Europe and was skiing and, you know, skiing, you know, Colorado. Rosewood, you Oh, I had a kidney transplant, you know, so I want to have my transplant recoverable back to school. So what I did

Scott Benner 23:23
know that's insane. And your I'm sorry, your you mentioned the stepfather earlier, but your father gave you this.

Ragnar 23:29
I thought yeah, my father. Yeah. My father Eric. Yeah. Yeah.

Scott Benner 23:32
And yeah, that's insane. How did he make up for the rest of his life with one kidney?

Ragnar 23:38
Oh, he's fine. He's so he's see he's see. He's 82 today. He's doing fine. He's working great. He was working he's, he's retired now. But he was working full time and he's had no problems.

Scott Benner 23:50
So but then that kidney only? Well, I say only but last year seven,

Ragnar 23:55
seven, yeah, seven, seven and a half years. Correct.

Scott Benner 23:57
Okay. And then tell me about that process.

Ragnar 24:01
So that process so somebody even indicating and that was at that time was really nerve racking and you're in the hospital for like two or three weeks or four weeks now you're on hold for like five days, but and so I had all the drugs and all that stuff. And I had this thing called chronic rejection. So my immune system is strong enough that it it just overrode the drugs. So it's but I had a really good match with my dad when I was seven years, and that kind of sucks when it fails, because you just you just starting over again. So you get the transplant and then it doesn't it works great and you're great and you know, doing all the stuff and done it. And then it fails. And it it's kind of devastating at the time I've been through. I've been through five total transplants. So that was my first one and it that was it was really tough, but you just have to it's like with anything you got. It's the mental attitude and how you deal with it. You got to just deal with it. And then so I went on, I was on dialysis for about A year and a half and I got a kidney pancreas transplant when I was 27. Okay, that lasted for and that lasted for like 12 to 14 years, something like that. But it was great that my dad gave me that kidney that was wonderful that he's able to do that. So

Scott Benner 25:14
no, it's amazing. I actually wondered, Is there guilt when the kidney fails and you but you do you ever think oh, it would have been fine in him? Where do you are just happy for the seven years.

Ragnar 25:26
I was happy. I think we talked about that early. And it was the transplant. We're both happy with that. Because it gave me able to finish college I was able to start worse. I played sports and you know, water polo and cycling still and all that kind of stuff surfing. So did all that. And so it gave me that time.

Scott Benner 25:43
Okay, pay be careful with that microphone. Rex. Oh, sorry. No, that's okay. So So you basically your dad's kidney got you to about 28 years old. Yeah, but Correct. Okay. Yeah. And then from there, it's a

Ragnar 25:56
kidney pancreas transplant. So if you need a kidney transplant, everyone out there should get the pancreas along with it. Because you got to take the same drugs at the service level is complicated, but we'd have to do it, you might as well do both, because then it's kind of you don't have to have diabetes for a

Scott Benner 26:11
little while. Right. So it was great. So okay, so you did at 28 You started dialysis? How long did that go? Before they found? work?

Ragnar 26:19
I had, it was about a year and a half dialysis for that. Okay. And yeah, that's dialysis isn't fun, but it's just kind of like anything, you know, I that at that time, I was doing dialysis three days a week, that's for sure. A lot because the United States allows later on my life is different story. But I had, I did dialysis like six days a week. Because the more dialysis you do, the better you feel, the better your blood is, like, you know, it's like doing more insulin, just the better you do, the more control you have.

Scott Benner 26:48
How were you doing a data center? Or had they had it set up at your home?

Ragnar 26:52
No, no, I saw my first that time and night when I was like 2829 I hadn't I didn't dialysis center. So I went in three days a week, you know, and all that. And I'll never forget this guy that was there. He has an old

Scott Benner 27:13
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Ragnar 31:11
Never forget this guy that was there. He he had this happen said attitude is everything. And that really stuck with me. So that was really cool. Because, you know, you can get down and down out and depressed about any conditions you have. If you have a good attitude about it, then it's just like, oh, I deal with this. It's not not the end of the road or end of life. It's just something you got to do.

Scott Benner 31:31
earaches I think of you as a happy person with our interactions that we've had. Yeah, yeah. So So walk me through it a little bit. Go to she go to the dialysis center. You can't drive home. So you need a ride? I imagine. No,

Ragnar 31:44
I would, I would I got to a point where I was, I would. Sometimes I rode my bike there. Sometimes I would drive there because I was working at the time I was working at UCLA Medical Center and the cardiac care unit. And so it's doing that. And that was great, because the hospital had three days, three days a week shift. So I do dialysis like Monday, Wednesday, Friday, or Tuesday, Thursday, Saturday. And sometimes I would, I would you know, when I first started, I've just I drive and my dad would drive me and stuff like that. But then I got kind of comfortable with it. And so then I just was just living life and I had to go through this treatment and go do it and be done. You know, okay, that didn't work.

Scott Benner 32:21
How long are you there, like so they you have a port I would imagine, right they give yet

Ragnar 32:26
they have a thing called the AV fistula. So they take in your arm, and your wrist or in your, in your bicep, there's a artery and a vein, and they put them together, and they make one vessel out of that. And so that's one vessel is called the AV fistula. And they put a needle in the, in the lower part of it, and then that's the atrium where the blood goes out of your body out of your body through the machine. And that goes back into the needle above an upper part of your arm. And that's the venous side. So that goes through the the coast of the blood goes through a filter, that hifi flushing or reverse osmosis filter, and then it goes gets cleaned and comes back into your body.

Scott Benner 33:05
Yeah, so they're literally removing the blood from your body cleaning and putting it back. Yeah.

Ragnar 33:11
And they'll clean it by doing a salt exchange. So what happens is if you say your potassium level is high, let's say it'll 566 milligram potassium levels, so they put a high concentration of bath in there, because salt will flow from a high flow to a low flow. So they'll put like three in there like three milligrams of potassium so low salt will come across in getting the air removed out of your body.

Scott Benner 33:35
Geez, it's amazing. Somebody figured out how to do that.

Ragnar 33:39
It's quite as really as amazing when you need when you need

Scott Benner 33:43
dialysis. Do you feel your Do you feel your energy lowering? Like how do you know it's been a while since you've had

Ragnar 33:50
it? Yeah, I use it's kind of like you're really like having a really high blood sugar or feeling after you've been really low and you feel just kind of allergic and tired and don't have any energy and you have a hard time thinking about things like get doing tasks, so it can wipe you out. It's really wipes you out

Scott Benner 34:12
the day after the process you're okay to deliver. Yeah,

Ragnar 34:16
I was okay. I felt good. Some people aren't but I was at the time I was young. I felt good. So yeah, yeah, I just kind of made myself do it anyway. So

Scott Benner 34:26
you did that for a year and a half year and a half then you got to new kidneys and a pancreas.

Ragnar 34:32
No, I got to just so they took the old one out because it was rejecting so they don't want to have an immune response. So they took the old kidney out. Oh, I got it. I got a new one a kidney and pancreas from the same person from African American lady in short, in Arizona. I got her kidneys, kidney and pancreas and that lasted for a long time. That was that was really hard that when I first got out of surgery, I was like, Why did I do this? It's not like you got hit by a Mack truck. But it worked right away. It was there. Amazing.

Scott Benner 35:00
So you, you woke up from that surgery? You didn't have diabetes anymore? No. Wow.

Ragnar 35:07
So I don't know if I've actually had diabetes for 51 years, so I need to like subtract the amount of time I have the kidney pincushions I don't know. Yeah,

Scott Benner 35:14
I Yeah, it seems that what do they call that Stolen Valor? So, from 1997 Until when

Ragnar 35:27

See, I think like 97 to what was it be 3790 9899? Like, like 20 like 2010 Maybe something like that. 2011 Okay, see, you got ya know, so no, sorry. 2012 is because I stopped. Yeah, so I got so I got 22 Sorry.

Scott Benner 35:54
You got 15 years with no diabetes. That Yeah. And but you're taking anti rejection medications during that? Yes. Right. And I imagine you still do because you have the kidneys still.

Ragnar 36:04
Yeah, I have the new cab a new kidney. I got a new one.

Scott Benner 36:06
So what are the anti rejection meds like?

Ragnar 36:10
Well, they're okay. It's just like taking it's like any medicine you have to take it's when you first take initiative take your first like medications is a lot of them. So you have like antifungal antibacterial, antiviral your program your progress is the main main drug your immune system has like 12 channels. I'm not a doctor but has 12 channels. And so the the called interleukins and each one of the transplant drugs was PROGRAF. One is my fortaco. One is prednisone, prednisone is anti inflammatory, but my four tick and progress block those highways, it's like you have a big highway coming down. And wherever you live, and they can just put a block on the highway, so then that then means this response can't really happen or weakens it. So that's what those drugs doing. And those drugs have side effects. The PROGRAF drugs the main drug you get you can get thing called tremor when you have too much of it and your body makes you feel a little loopy or anxiety. And then my four day calves you have side effects you have is like stomach issues GI distress, stomach stuff. And prednisone. If you have too much of a gimmick, you really really crazy like my last, my transplant in college, when it was rejecting. I got up until like, two o'clock in the morning, I cleaned my bathroom, the kitchen floor with a toothbrush, you know and organize all my college notes. So

Scott Benner 37:30
I got a steroid pack. I don't know a few months ago, for something I got bit by something. Anyway. So boring story, actually, it's a great story, but it doesn't fit here. But But I got put on the pack. And the pharmacist messed up the script. And had me take way too many upfront and I figured it out about 48 hours in because I felt like Superman. Yeah, I was like, my body had no aches or pains or creeks and I had all this crazy energy. And I was like What the hell's going on? And so I dumped out the pills and looked at the rest of the dosing schedule. And I was like, I don't have enough pills to get through this room. So I had taken way too many upfront, non dishing how quickly that feeling got to me.

Ragnar 38:18
Yeah, and then also like, it makes you really emotional too. So you can like you watch a hallmark commercial, like a dog and you know, mom or whatever, and you start crying. We get really angry snap really quickly. Your wife or your kid, you know, like, really like edgy. You gotta like wanted to bite your tongue.

Scott Benner 38:33
Wow. Well, okay, so I guess I need to ask you. You've had diabetes, not had it and gotten it back again.

Ragnar 38:43
Yeah, so that's a story. That's interesting. When I got a bad result, when I had my pick of transplant, I was like you when you'd hit your Dexcom I'll do I would do it. Like have a coke and do a blood sugar test to be like at, like, you know, after a call could be like at eat something, whatever. No, like at 90 at night. So finally, one time, I wasn't feeling like my kidney started rejecting. So I did a test. And my blood sugar was like 180. So like, this is a you know, pancreas started reject. So I went to the pharmacy bought some insulin at the pharmacy, some needles, I gave myself a shot. And then and then the doctor said, Oh, they gave me that form. And some other drugs have slowed down and just ended up rejecting but but yeah, so that was interesting. Because I was a camp counselor. I would go to the we had this thing called them. We talked to other families. Like the whole bunch of diabetics on this board and family camp, we'd have the pantry come and talk to us about our experiences and stuff. And I'll never forget I finally understood my why my mom and dad always asked I was doing this because they cared. It wasn't because they were trying to get on me. Yeah. So that was really important for me to understand that. So when I say that I really understood that even more so. After I got no no it was like because I grew up with it. I didn't know what it's like to get it but now I didn't know what it's like to get it And at least I know what to do ahead of time. But, but yeah, I was still pretty, you know, like, doing it not again, you know. So anyways,

Scott Benner 40:08
I do my best to make sure our to knows why, you know, like she Yeah, she texted me back kind of short recently. And I think I responded with something like, I know you don't want me involved in this as much as I am at the moment. I'm sorry that this is what's happening. But you know, I love you and we're not going to let you not be okay, so

Ragnar 40:28
yeah, no, that's yeah. I mean, if my parents had had the tools and stuff that's available today, I think things would have been much better for them. And for me, I think would have been a lot more

Scott Benner 40:40
able they had the they had the motivation and the desire. They just didn't have anything to work with. Yeah, exactly. So hey, so that that pancreas after the transplant, was it rejected, or did you get diabetes again?

Ragnar 40:53
No. Yeah. So rejected that. So the chance to transplant was they don't believe it in your body? But it's I was diabetic, right away again, type one. Okay. Yeah. No, type two, unfortunately.

Scott Benner 41:05
I'll take anything I can get you so. But those those kidneys didn't last either, though, right? You got another surgery after that? Or am I

Ragnar 41:16
so then so after so then I waited to that one happened? Yeah. And then so after tenure, I was 10 years on dialysis. And so I was working full time and my, my, my pacemaker job, and then also in medical devices and stuff and go into surgeries and all that kind of stuff. And they had home hemodialysis. So I do work all day, come home to dialysis, get up go work again. I did that. But I was doing that like 667 days a week. Because there was a study done and it's done on November not a doctor or anything. But I think there was a study done in Italy where they did quality of life compared to amount of hours of dialysis. And they found out if you have 15 hours of dialysis or more you quality life will be pretty normal. So in home dialysis, you can do you do three days, three hours a day. So you do like, like 18 to 21 hours a week. Sometimes I do 23 hours a week. So I felt pretty good. I was doing triathlons on on dialysis and surfing and working and everything like that. So. So the more you do, the better it is.

Scott Benner 42:19
Yeah. Can I ask some more more like, psychological questions about yeah, having it not having it for so long? And then having it again? Yeah, yeah. Is it harder the second time? Or do you because you were so young the first time it did it feel like, I just I can't imagine I don't know the right questions to ask you.

Ragnar 42:41
Right. So. So yes, I know what you mean. So so so it wasn't, it was a bummer. And I was disappointed, but I knew exactly what to do. Because of the camp I went to when I was a kid, their skin metal camp, I was taught how to live well with diabetes. So I had this all this education from you know, through the years of having to deal with this condition. And, and so I was able to step back in pretty quickly, I was pretty bummed because I couldn't you know, the sushi rice or whatever else or whatever else. I think that for me, it was hard. It was the vowel system the diabetes because I got to a point and diabetes that was you know, relatively pretty in control the ultra lenti and all that stuff and then had the pancreas so you know, so I went back to camp called Camp. It took me forever to get insulin pump. And I had the first Dexcom I thought that was amazing technology, both of it, but no one told me at the hospital I was at to use fast acting insulin, so I use old regular insulin. And it didn't work too well if the pump so the but yeah, so it was it was it was difficult, but it wasn't unmanageable. I wasn't depressed or anything like I was more depressed about losing the kidney, and then I was about the diabetes,

Scott Benner 43:58
because the the diabetes is manageable on site and the kidney means Dialysis again, that

Ragnar 44:05
exactly, and it really interrupts your life more so than diabetes because diabetes and so go do stuff, you know, just I just got to take my, my backpack that I have, you know, I still have the same kind of stuff I had when I was a kid. My high school had an orange backpack. Now I have a black one anyways, that's put on my sugar and stuff in there.

Scott Benner 44:24
i When my friend Mike was getting dialysis, I feel like his life was either getting dialysis or recovering from dialysis. Right. You know, he got to the point where he couldn't work.

Ragnar 44:37
And what and what what time? What time was that in like the 80s or no?

Scott Benner 44:41
Well, I mean, it's been gone a couple of years now, but he'd been he'd been doing it for a while prior to that I'd say in I mean, this was you know, still in the 2000s Yeah, 2010 around I would imagine he started and but I just his life, like it started off like I'm working, but I'm getting dialysis and then slowly went to I can't go to work anymore. And then it's like, I just felt like it was going to dialysis and recovering from now.

Ragnar 45:10
Yes, because like, at least with with diabetes, you can eat anything you want pretty much, you know, on dialysis, you got to really careful what salt, potassium we have with phosphorus, you have to take a phosphate binders, you got all this other stuff to do. So with diabetes and dialysis, it is quite a burden. But you got to what I did, when it was successful with it, because I just kind of broke it down to like you, you know, we learn here how to like diabetes that has a certain set of rules that you have to kind of follow. And so to dialysis, you have to certain you know, because if you don't pay attention, you'll pay with tension. So I'd rather pay attention and I did the best I don't I'm not perfect, you know, I'd mess up on my dialysis treatments or my treatments, but on my care, no diabetes care still kind of mess up, you know?

Scott Benner 45:55
No, yeah. I just sitting here thinking about Mike, he wasn't. He didn't. He wasn't graded as diabetes. Like I don't think it was effort. I just don't think he used old insulin way too long. When they tried to get him to Novolog. He was just out of his depth. He didn't have any sensor technology. I tried to talk to him about it, but he did not like he did not like talking about his diabetes. And he just he struggled every which way. But you know, it was I'm not even sure what Yeah, yeah, it was frustrating that, yeah, that he, you know, he had a problem his you know, different than yours, his problem led to his need for kidney, you know, from dialysis. And still, as he's getting the dialysis, he still doesn't know, like, nobody ever stopped to teach them about diabetes.

Ragnar 46:46
That's terrible to me, like, you know, this is, you know, like, like, you know, thank God for the doctors and nurses, clinicians, but sometimes they forget that you're actually dealing with this every on a daily basis. And you need to know the information properly to be able to help you help you control this kind of uncontrollable, but you help you control it. So. And, you know, and I don't know, I haven't talked to anybody that has diabetes from a dialysis from diabetes ever, really. But I would imagine that it's pretty depressing, because you get, like, diabetes can take care of that. And I'm on dialysis. And then it's kind of a downward spiral, you know,

Scott Benner 47:22
well, what I always imagined too, was that his lack of knowledge caused it and he's aware he doesn't do a good job with this diabetes. And now it's like, you're bailing out a boat with a thimble. And, you know, on the other side of it, you're still you know, better with your insulin than you were before. So, you know, and then from there, I mean, I don't know if you know, through our conversations he never mentioned that is his heart. And right and that in the end is what failed.

Ragnar 47:50
Yeah, so that's probably from the dialysis more than not the kidney stuff because you all your, your salt, potassium, and all your other stuff gets messed up. So really, and then all of them with the diabetes shoe with a high blood sugars and you know, like you always mentioned about the razors going through your veins, you know, so yeah,

Scott Benner 48:06
those two things together or not? Yeah, not a great couple, huh?

Ragnar 48:10
Yeah, I had a really good friend of mine who had kidney pancreas transplant and she was diabetic for a long time. And she after a year and a half of her kidney, pancreas transplant, she had a massive heart attack and passed away. So you know, and she took care of her diabetes, so who knows? You know?

Scott Benner 48:30
Yeah, it's not great. So but anyway, sorry, I don't know I'm not gonna talk about Mike It messes me up.

Ragnar 48:40
Yeah, no, no, that's okay. I understand that that's you know, I totally get that yeah, a friend of yours you know,

Scott Benner 48:46
yeah. Let me ask you this then. So when do you like your your looping now? How long have you been doing that?

Ragnar 48:53
I've been doing it God like to see before the pandemic so that was my my own pause I think one of the one of the looping come out I came out like a came out like six months to a year after that maybe like 2019 Maybe 2018

Scott Benner 49:11
That's a good question because I don't know.

Ragnar 49:13
I don't know. I can't remember as it's been long enough now that I've been doing it for a long time. Like it still drives me I still don't have I still try to get things dialed in I just it's it's you know as long as I can this other doctor I have a private doctor I pay for he's diabetic as well. And he was somebody with us older diabetics is that we try to out think the technology because our whole life with technology diabetes, always had to out think the technology to try to make it better. So when you try to do a loop, you get in trouble. Yeah.

Scott Benner 49:47
I know. Yeah. I I'm looking here I'm seeing I'm seeing YouTube videos from Katy in 2018. And I'm cooking Yeah, I do. And then there's Here's an article from 2016.

Ragnar 50:05
Yeah, so I had to be like 2019. I think 20, like late 2018 or 2019, because what happened was that I had, I know, so it's probably 2019 Because 2018 My analysts pumped, I couldn't read the screen anymore. So I needed to get new insulin pump. So I tried to keep that thing as long as that, of course. So then I said, I told my doctor, I want to do this looping thing that we had to buy the old pump. So it's before the, the loop came out before the Omnipod came out with loops. And so my doctor said, Oh, don't do that. So I tried to the 670 G Medtronic, which drove me nuts. I mean, I was able to run a half marathon. I eventually figured it out. But it was just oversold to me. So I got frustrated because I had the Dexcom for so long. So I finally went back to using Dexcom and making a trying to have just a pump. Okay. And then I got the loop, which was, which was amazing to me. So

Scott Benner 50:59
yeah, this this article from 2016 is from Dana Lewis. And she was on the show, and her and her husband was on years ago, like around that time. And this was open aps that they were dealing. Yeah, they were done. I didn't do that. Yeah. Wow. That's really, really something that just I mean, even that's been, I mean, what is that? 2016 from damos? thing? 17? Yeah. I mean, you know, we're already seven or eight years into it. Unbelievable. Yeah. Hitting. And so you found it pretty quickly.

Ragnar 51:29
Yeah, I mean, I've always been up on because I've worked for medical device industry for so long for pacemakers and defibrillators, and all that kind of stuff. I've really believed in medical technology. So I've always tried to be really on top of what the newest diabetes thing was. So one thing that I had the Ultralight I never went to a pump. And probably should have that earlier, but I never did. So I was trying, being kind. Because what, you know, you got to be open to the new technology, because it's it's works. I think, you know,

Scott Benner 51:58
yeah, no, I agree. So, what have your outcomes been? Like? Like, what were they? Like going through your life? What do you remember, you're a one sees being as you were growing up?

Ragnar 52:08
I don't remember my agencies growing up, I used to be asked my blood sugar and my doctor and use different pens and pencils for the logbook puts for blood sugars, and you know, and I think he knew was going on. He was pretty smart guy. So

Scott Benner 52:22
brakes. Are you saying that you were you would switch your writing implement to make it look like you are honestly keeping the

Ragnar 52:28
book? Yeah. Oh, yeah, of course.

Scott Benner 52:31
Can't just use the same pen. You'll know. I did it all on the same afternoon. Exactly, you know, but so he saw he sees your log book, but he sees your test results as well.

Ragnar 52:41
Yeah, he'll say you got to do a better, but I think it was like, when I was younger, hard to say I don't even know when the agency started coming out. So but as a teenager, and through high school, I was trying but we still weren't know are doing. But when I started the ultra lanteria that everyone sees us probably like, started the age that came down like sevens like mid set, I was probably mostly mid sevens, eights the whole time there for a while. And then the tankers transplant. So that was good. And then the loop has been has been I've been my last one was 5.0. But I don't know if I believe that too much. Because my Dexcom says I was like one like 6.2. So I kind of believe the 6.2 more than the five point on for some reason. Because it with it with kidney transplant. If you have it, you usually have anemia. So when you have anemia, make sure your anyone sees a lot lower.

Scott Benner 53:32
Well, I have a little blurb here from you from the NIH. Yeah. the ADEA has now acknowledged oh my god glyco hemoglobin a one C as the diagnostic criterion for diabetes mellitus. For the first time since the publication of the ADA is guidelines in 97. And this article was written in. Yeah, okay. Yeah, so looks like maybe 1997. And then 2012 looks like when they await the American diabetes Association guidelines. First diagnostic Collins July of 1997. Thus, the current revised criteria for diabetes diagnosis and screening as of January 2010, are, oh, this is this is you know, how they move the needle all the time on where your agency should be, you know, every year they're like, well, maybe it shouldn't be here. Maybe it should be. You know, it's funny. Yeah.

Ragnar 54:26
Well, I don't get like from your, your, once you've heard about people that have had that pregnancies in our agencies are like five to 5.2 or whatever. And then they leave their pregnancy and the Oh, you can bet you're fighting back to seven and seven and a half and like, Well, five is good. Why not keep it there? I don't know. I don't want never

Scott Benner 54:42
using this as a you know. So the I think what happened was and I have no idea, but what it seems like to me is that as technology gets better, and the possibility for people to take care of themselves gets easier and more widespread. Then they move down to the top the target, but what ends up happening is the immediate person in their 40s just like look, man he wants he's seven and a half. It's right when my doctor wants it. I'm like, Yeah, that's from a conversation you had with him 15 years ago. Yeah. You know, and, and he's like, Oh, are you now? Like he doesn't he doesn't, for some reason come back to you and say, hey, look, the guidelines of move, go for seven, go for six and a half like that. It's interesting. Everybody kind of gets stuck somewhere, wherever they start, maybe or wherever they get comfortable. I don't know. But yeah, you know, there'll be a day when the ADA says your, you know, your guidelines, or, you know, you're looking for 5.5 or something like that. Yeah. So, you know, but to your point, the pregnancy thing is always fascinating. That like, you cannot make a baby with an A one see of blah, blah, blah, get it to this. And then the baby comes out. They're like, all right, relax. Back to where you were, it's all fine. You know, fine. Yeah. A lot of a lot of it's just, I mean, a lot of it's just based on on human nature, honestly. Yeah. And what, what we know people are willing or capable of doing, I guess, depending on who you are. Yeah. Anyway. So. I mean, what would you what would you tell people about a transplant? Like, would you say go for it?

Ragnar 56:22
Yeah, if you can get to me I've had, I mean, I had so after my kidney, pancreas transplant, my cousin gave me a kidney on the last day of the week. So then I waited another. Yeah, someone lasted a week now. Yeah. Someone always waited tenure. And in 2019, yeah, 2019. I got it. I got a kidney transplant from a donor in New York. And that one failed in. So no pandemic, my friend went hiking yourself. And then I came back. And I could tell I wasn't doing well, I was really tired. So I went in my kidney was failing. So I had to go into the hospital. And like July of 2020, I'm like, this is, you know, fun. So I did that had a biopsy. They said, Oh, it's, you know, it's not working. Right. But it's not rejecting. So, you know. So then this one failed, actually, last December. And December 2029, December 2021. And then, and so on to 2222. I got the call for a new kidney transplant, the one I have now who 22 year old kid in Santa Cruz. So this one is really was working very well. So I'm pretty excited about that. How

Scott Benner 57:32
a couple of questions. What's the longest time you went without a functioning kidney? 10 years? It's you 10 years dialysis? Yeah, one, how, what's the process of getting on the donor list.

Ragnar 57:47
So that so you have to couple of things. One is you have to, you know, go to see your nephrologist, to transplant doctors, and they have to help you put you on the list. If you're on dialysis, you get on the list, you have a little quicker. But if you can use failing, that puts you on the list. So there's a whole process of paperwork, I don't know, they have to do a whole thing you get when you're on dialysis, you get Medicare insurance. So if you have private insurance, you also get Medicare insurance. You can think Nixon did that actually. And then then after that, you have to make sure that you are, you know, doing your dialysis treatments properly. Like you're being compliant with your dialysis treatments, with your diet with your medications, everything has to be really compliant with everything. If you're overweight, you have to lose weight, we have to be really compliant and show that you're willing to take care of, if you can't take care of we know Dallas can to get a transit, they won't think you can take care of the transplant. So you have to show that you're able to do that. I see. And that's kind of the biggest thing I think, and and you know, and so, now transplants have become, you know, when I first had my first one, I think I was in the hospital, like three weeks to a month, whatever. And this last time I was in the hospital for a week, you know, so it's really, things like like with diabetes managers really changed a lot than the drugs are much stronger. suppress your immune system. You have and sometimes

Scott Benner 59:10
I was gonna say, do you get sick because of that? Or what did COVID freak you out? Or

Ragnar 59:15
COVID really freaked me out because I had a transplant so sick, you transplant immunosuppressive drugs. So you know, I'd get a sniffle or a sore throat or you know, we live in town. We live by the beach and like, oh god have COVID You know, do you know? And everything else was fine and have a fever or anything like that. So that was kind of nerve racking for me. Not so much now. Now. I'm a little more you know, there's there you have a mask, you have vaccines, you have treatment. There's the whole slew of things compared to when we first started then. Yeah, I used to listen to you during that whole time was this year doing like two or three Shows a week, whatever it was, I was listening to every every time

Scott Benner 59:51
thank you. I appreciate that. Yeah. What about longevity? Like how? What are your expectations? The doctors talk to you about like, why

Ragnar 1:00:03
not? And that no, I hope they'll be, you know, in my 80s 90s. That's what I hope. Yeah, take care of myself. Both a transplant longevity is for instance, they, you know, most of them lasts about a year. And then after that, you know, certain amount percentages kind of go go lower as you get longer out. But you didn't get the five years and you're the so the first most important years the first year. And then the next milestone is five years, not if that's 10 years, and then 15. So, so it they can last, you know, I've had them last for two, you know, like, whatever, 14 years and I'll one lasted a week. So just has to do with your immune system more than anything. And you have to be compliant to your drugs. Do you have to take your medication?

Scott Benner 1:00:45
Right? What about psychologically, is there a difference between receiving a donor from like a live donor who, you know, versus I'm assuming somebody who's passed away sadly,

Ragnar 1:00:59
yes, definitely. Because my cousin Eric gave me a kidney. You know, and it was all excited. And so the month before mchunu, certainly went to Hawaii for like, three weeks. And I came back and got the transplant from my cousin. And I only lasted a week. And so we were both just devastated. I was just I took his, you know, he gratefully gave me his kidney and the kidney didn't take. So I felt that he felt that we both thought was our fault that the thing didn't work out. Yeah, that was just science. It was had nothing to do with that. But it is, once we get a categoric transplant or someone who has passed, there's no person has already passed away. So there's no to me, there's no it's easier to deal with, personally with psychologically with that, because my cousin now only has one kidney. So I'm only worried about him losing his kidney going on dialysis, like a K or picking a water, you know, blah, blah, blah. Yeah. So that's, that's kind of an important. Yeah, that's definitely different. For me. That's the the thing is the living donors lasts longer. So my dad gave me kidney, for instance, you know, and he's been, he was 21. And he was 51. So it's been 31 years ago, 31 years, and he's doing fine. You know?

Scott Benner 1:02:09
Does your cousin get better gifts at the holidays than other people in your family?

Ragnar 1:02:13
I don't know. I don't think so.

Scott Benner 1:02:14
I mean, from you, I met from you. Oh, yeah. Yeah, of course. What's that? What's that like to approach a person and ask for that?

Ragnar 1:02:27
Well, you know, cuz you always tell people you need a transplant. A lot of people say, oh, yeah, but then rubber hits the road, and it doesn't really happen. But you put it out there. And you know, you hope for the best. And it's asking drum like, what my dad, my, my father helped me. Like, he would ask the family, you know, hey, listen, when you're writing a kidney, and then I would talk to that person. And, you know, you're okay with it. It's it. You got to be okay with if the person says no, or if they say just change their mind at the last minute. You have to be okay with that. It's It's okay. It's their decision, you know. So, but it is a little bizarre, you know,

Scott Benner 1:03:06
but I mean, if Mike if it was my kids, I think I can I imagine I'd be okay with that. Another, I'll say, I don't know. I don't know what I would say if another person asked me. Yeah, you know, it really would be an incredibly difficult thing to think through. Yeah. Yeah. That's, well, it's it's a kindness. Really, anybody who's done something like that for somebody?

Ragnar 1:03:29
Yeah. Really? Yeah. It's, it's unbelievable, you know? And I've had, you know, I put when I used to do my my runs my 10, k's and my half marathons and stuff, I'd work thinking says, I need a kidney transplant. I said, I needed a kidney. I put my phone number on it never got a call from that, but I always hope I would.

Scott Benner 1:03:45
I'll tell you what, that'd be amazing. So it's like that guy in a T shirt needs a kidney out?

Ragnar 1:03:51
Yeah, yeah. So

Scott Benner 1:03:54
listen, we sold something on a Christmas card one year. So I don't think I've ever told this story. I'll give it to you really, really quickly. We bought this when we bought our first home. It was this little crappy house. Yeah, on a really nice piece of property. And it was always our intention to just knock the house over and build back in that space. So we finally got into a situation where we could have I'm saying afford but we you know, it's not like we paid cash. We took out loans, right. But we could make it happen, right? We actually could were able to borrow the money to build the house, but we couldn't afford anything extra. And so we didn't know where to live. While this was happening, and it was going to stymie us we were going to like end up not building the house because we had nowhere to go. We had two kids at that point and a dog and there was you know, all of us. And one day I called my wife at work and I said I think I know what we can do to build the house. And she goes what I said we can buy a travel trailer and have it put on the property and we can live in the trailer while the house is being built. And just like you're out of your mind, and I'm like, that's the only way we're getting this done. Because even renting like a condo locally was insane. You know what I mean? Like, that wasn't gonna work. And we couldn't, we don't live near family, a reasonable distance the kids were in school, etc. So we did this, we bought this, like, I forget how big it was, it was huge. And it had like, slid out on the side. But the payments on it, were only like $89 a month. So you get it delivered. You hook it up to the sewer and the water. The township says it's okay. We, you know, talk about it with our neighbors. And we're like, look, we're sorry about this, but we're going to live in a trailer in our backyard for about six months. And, but then as soon as you're done with it, and the house is finished, we don't want this trailer. Right. And I don't know how to get rid of it. So it was the holidays, and we took a photo of it. I did. I cannot blame Kelly for this, although then I get all the credit because it worked. So I took a photo of it and we put it on the front of our Christmas card. And the front of our Christmas card said for sale. And then it had all the information about the trailer inside said serious inquiries only Merry Christmas. And we sent it out to everyone and Kelly's cousin's wife's parents bought our trailer. Wow. So great. So I'm saying I probably would have put the phone number on the T shirts. Yeah. Like it's worth a shot with the shot. Exactly. I so thrilled to get rid of that trailer. Not as happy as you would have been to get a kidney. But you know what I mean?

Ragnar 1:06:31
Yeah, I got, ya know, it was a weight. So

Scott Benner 1:06:36
it was like it was, well, first of all, we were paying for it. A second of all, we have anywhere to put it. So like our neighbors were like, Okay, so the house is done. What do you do with that? I'm like, don't worry. Don't worry, I have a plan that involves my holiday card. It's gonna be fun. I still can't believe that word rags actually. That's great. Oh, my God. Yeah. Well, is there anything that we haven't talked about that you wanted to?

Ragnar 1:07:05
I just wanted to say one thing I wanted to say was that, you know, sometimes you have diabetes to me as a condition moreso than a disease because it's hard to deal with it. But sometimes you have other diseases or conditions. This that wasn't caused by your diabetes, it's just another disease you have, you know, so it's not the diabetes fault or your fault or something. I just wanted to say that, you know, sometimes people have other stuff that has nothing to do with the diabetes. It's just, you know, Luck of the luck of the draw. Yeah, you know, I mean, I guess did a Lago like, five years ago was like, really? Okay. You know,

Scott Benner 1:07:43
hey, great. This is great. Yeah,

Ragnar 1:07:46
this is great. Yeah, super. Yeah, nothing get rid of it. Yeah. And I don't know, it just, yeah, just I think diabetes is it's a life, you know, life. Not lifelong. But, you know, whatever we have to do, we have to do it and you have to be positive, try to be positive about it. It gets big, you know, we all go through our ups and downs with the condition but it's it's a it's a process it's part of the journey, not you know, the end result. Of course, it happened great blood sugars. But if you sometimes have had a normal range, blood sugar, the like yesterday, I'm running out of pods, right. So I have one, I have two pods left. And then of course, the insurance is backed up. So yesterday, my my, my sugars are like, like 190, even 202 20. And I'm like, can't keep going to use of insulin and bring it down. But I don't want to lose the particular one pot left. So that kind of stuff happens. You know, we're Yeah, or you know what?

Scott Benner 1:08:45
You're saying a lot here but you're not saying what you mean. I don't think so. What is your what do you what's your message?

Ragnar 1:08:52
Oh, my message with with diabetes is is take it takes it, take it as it comes in. Don't try to live in the results too much. If you have a budget of 300 like Arden did it yesterday without a day. That's just the number it's not a reflection on who you are. So

Scott Benner 1:09:07
you got to fix it and move on. You can't you can't look backwards and and beat yourself up. That's not That's not okay. You know, you're gonna you're gonna end up causing yourself more problems that way. Yeah, yeah. No, I You said something earlier to like, it slipped my mind. But it was akin to when I tell people, like do a little work now to save a lot of work later. Yeah. And something about tension. Would you say what did you say?

Ragnar 1:09:32
Oh, yeah, say yeah, my dad told me some of this if you don't pay attention, you'll pay with tension.

Scott Benner 1:09:38
Now he's it's brilliant. But it's it's simple and it's brilliant at the same time, just I all I wanted to tell art and yesterday was if you just take five minutes now you're going to save the whole day. And she you know, in her mind, she was busy or in class or doing something she didn't have that time. So I but I'm not going to hit her with But now like, I'll wait until she's home, and we're talking and I'll bring it up and I'll be like, Hey, here's a great example of, because that's a lesson she needs. She really has to learn is exactly. It's the lesson your dad was telling you. So yeah, exactly.

Ragnar 1:10:14
And took me a long time to learn that lesson school of hard knocks, you know, so

Scott Benner 1:10:18
yeah, all right. No, I wish it was easier for people to learn.

Ragnar 1:10:21
Yeah, and you know, and then, you know, thank God for the technology to be able to, you know, I'm getting low, please.

Scott Benner 1:10:29
If this was 2020 years ago, Arden wouldn't know what our blood sugar was. Yeah. You know, like she wouldn't if she felt okay. She wouldn't have tested while she was at school. Yeah, you know, so we know because of the technology. Yeah. Anyway,

Ragnar 1:10:42
I had one time I had instant reaction in class, that back in college, but whatever. It was fun. panics aren't paramedics around me. I was like, Oh,

Scott Benner 1:10:52
my God. Yeah. Everything that I've done, right is trying to set Arden up to not be the kid who passed out of college. So yeah,

Ragnar 1:10:59
yeah. Well, she's she's done pretty well in Illinois. Right. She's in Chicago.

Scott Benner 1:11:03
Are you being funny? Yes. Yes. In Chicago doing great.

Ragnar 1:11:07
Yeah. Getting ready for the winter. Yeah. So one more thing. I am looking for a job. So any medical device companies out there, you can give me a call? Oh, no kidding. What kind of work do you do? I used to sell cardiac pacemakers, defibrillators, but I like I'm a medical sales rep. So

Scott Benner 1:11:22
alright, well, I'll tell you what, I don't know when this is going up. But that, hey, if somebody hears it, contact me, and I'll move you on to rice. Thank you. Appreciate that. salutely Thank you for doing this. And I really do appreciate it.

Ragnar 1:11:35
All right. Thanks a lot, Scott. Appreciate it.

Scott Benner 1:11:43
I have a note from rags that I'll read at the end. But first, let me thank Dexcom, makers of the Dexcom G seven continuous glucose monitor, and remind you to go to dexcom.com forward slash juice box to learn more and get started. I'm also going to thank contour makers of the contour next gen blood glucose meter, you can use the same brand of meter that Arden does by going to contour next one.com forward slash juicebox. Those Second Chance test strips you don't want to miss out on them. Don't forget to check out the private Facebook group Juicebox Podcast type one diabetes, and all the great series within the podcast which you can find at juicebox podcast.com. We're in the feature tab of the private Facebook group. So reg sent me this great email kind of updating me on everything. And he was worried that I'm going to use his words. I'm worried I made kidney disease sound easy and nonchalant. Which the opposite is true. Basically, he just doesn't want anybody to think that this stuff is simple, or that he was trying to make it sound easy because he said that is not the case. Anyway, rags I thought you were terrific. I love this episode, and I appreciate you being concerned for everybody else, but I believe the honesty of your story came through. Alright everybody, thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast.

#946 Best of Juicebox: Diabetes Variables: Alcohol

Originally aired on Dec 17, 2021. Diabetes Variables: Alcohol

Scott and Jenny Smith, CDE share insights on type 1 diabetes care

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 946 of the Juicebox Podcast

I thought for the Fourth of July we would run a best of episode about alcohol. Don't ask me why just seemed like you know the right thing to do. Today's episode features Jenny Smith and I in a diabetes variables episode, Episode 596 originally aired on December 17 2021. It talks about alcohol and its impact on your type one diabetes care. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you want to check out Jenny, you can hire her at integrated diabetes.com. And if you want to check out the entire bold beginning series, it's available at juicebox podcast.com. Go to the menu at the top click on bold beginnings, you'll see all the episodes there. It's available in your podcast player, any audio app you're listening. And if you're looking for another list, but you don't want to go to the website, you can go to the feature tab in the private Facebook group Juicebox Podcast type one diabetes

this episode is ad free. But please remember to use the links if you have the need. They're in the audio app you're listening in right now in the show notes. Those links are also at juicebox podcast.com. Or you can type them into any browser. I appreciate you thinking about the podcast when you're making purchases when you support the podcast by using the links if you're keeping the podcast free and plentiful. And here's a couple of quick savings for you. If you'd like to start drinking ag one in the morning like I do drink ag one.com forward slash juice box the first time you buy at one with my link you'll get five free travel packs, and a year supply of vitamin D. And if you like comfort, comfort in your sheets, your towels and your clothing. Check out cozy earth.com If you find something you like put it in your cart. And when you're checking out use the offer code juice box to save 35% off your entire order not just one item, your entire order. Alright, check out this episode and please do not blow your fingers off. Happy Fourth. Hello friends and welcome to episode 596 of the Juicebox Podcast. Oh

so this is it. This is the last episode of the diabetes variable series with me and Jenny Smith. And today's topic is alcohol to see how I've timed that to coincide with New Year's. Hmm, that's right, I'm thinking. Please remember while you're listening 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 are becoming bold with insulin. Today I'll be speaking with Jenny Smith. Jenny has had type one diabetes since she was a child for over 30 years. She also holds a bachelor's degree in Human Nutrition and biology from the University of Wisconsin. She is a registered and licensed dietitian, a certified diabetes educator and certified trainer on most makes and models of insulin pumps and continuous glucose monitors. She's also Jenny from the Juicebox Podcast so come proper I really hope you've enjoyed the variable series if in the future Jenny and I think up other ones will add them but if not, they're always there for your needs and enjoyment.

This show is sponsored today by the glucagon that my daughter carries. G voc hypo pen. Find out more at G voc glucagon.com forward slash juicebox. Jenny This is the last variable we're going to record. Oh, we've done it. It's very exciting.

Jennifer Smith, CDE 4:28
That is very exciting. A whole year of recordings are variable that's that's a lot of variables.

Scott Benner 4:32
I'm not kidding about it. At one point I looked at the list and I was like why did I like this is not a good idea. But it ended up being great and I really did enjoy it you obviously brought a ton to it. So last one alcohol How was alcohol a variable for for using insulin.

Jennifer Smith, CDE 4:52
but alcohol is a variable because alcohol can lower your body's ability tea to respond to the typical turnaround hormones that would raise blood sugar, you know, if you have a low, and so alcohol in and of itself, and we're talking like, several drinks, or even just one drink, depending on how your body tolerates alcohol. And many people I think are kind of confused what to do about alcohol because they feel like, well, if they're drinking, like, a hard liquor, for example, really doesn't have carbohydrates in it. Right? So you may not be bolusing for it, and you should, you know, not not necessarily unless it's mixed with like cranberry juice or orange juice or something like that, right. But other types of alcohol such as beer, have a fair amount of alcohol to them. carbs, or sorry, yeah, the alcohol carbs. Yes, thank you. I was thinking alcohol, alcohol. Yes. So there's, you know, I mean, anywhere between 12 to maybe like 22 grams, depending on the size of the bottle or the can or whatever you're drinking, really? So do you cover the carbs? And then what happens later, right? Do you take insulin to cover the bottle of beer that you're drinking? Do you not what happens most people who don't cover the carbs initially will have a higher blood sugar.

Scott Benner 6:19
So is the concern around bolusing for carbs that are an alcohol that at some point, you become a knee braided and are not the best shepherd of your blood sugar, if it gets low?

Jennifer Smith, CDE 6:29
Those are the good questions to always be thinking about. Yes. Because in terms of low from alcohol, low from alcohol is a delayed low, it will tend to happen later on. So our typical recommendation on a normal conventional pump, it's a little more a little more, I guess, difficult if you're doing injections, but on a pump, it would usually say at the end of the night, let's say you've had several drinks over the course of the evening, it's midnight you get home at that point, you want to really decrease your Basal insulin delivery, because that's when alcohol is likely to come into the picture in terms of hitting you and causing you to go low.

Scott Benner 7:17
And is that the actual alcohol that's bringing you down? Or is that your? Or is it the Bolus that you used? Or no, if even if you didn't Bolus you would get low afterwards.

Jennifer Smith, CDE 7:28
It shouldn't really be the Bolus. I mean, again, bolusing has a definite like end point of action, right? Let's call it four hours, just give or take three to five hours, four hours. So if you last Bolus at 10 o'clock, you're low at 2am. Sure, it could have something to do with some of that Bolus still being left in the system. But it could also have to do with the way that the liver turns around and deals with, let's call alcohol a toxin, right. So as the liver is dealing with turning that alcohol around and getting rid of it in the body, your liver is also not putting out the typical turnaround for drop in blood sugar, right? You don't have that counterregulatory hormone production, so that your body has some glucose drip coming out of it saved stores to help you. So in that we usually say for every alcoholic beverage consumed, we really want to take the Basal rate down by a certain percent for about two hours per beverage consumed. Okay, so if you had three beverages at the end of the night, the percent that we would take it down would be by 40% of a decrease. And then the timeframe to decrease would be about two hours per beverage.

Scott Benner 8:45
Okay, so So you're basically people might not recognize that your liver is making glucose and you know and giving it is giving it off like Luca is it glucagon or glycogen or I forget the word,

Jennifer Smith, CDE 9:00
right? I mean, your body's counterregulatory hormones essentially coming from the liver or helping your body to essentially put out in the turret in terms of a low or a drop like that. It's helping your body to put out the glucose, right? I mean, that's why we have glucagon kits, right glucagon kit is a really quick turnaround of telling your body to spit out the glycogen and to turn it around into glucose to sort of bring you up from the low

Scott Benner 9:28
but if you're if you're taxing your body with enough alcohol, the liver gets focused on that. And then as your blood sugar gets low, it doesn't go through that process. In the same

Jennifer Smith, CDE 9:39
way, it doesn't go through that big process of counterregulatory. But also remember the reason that we're taking Basal insulin is to counter the production and natural drip drip of glucose into our system to begin with. So if the liver is busy taking care of alcohol, it's no longer going to help with that normal drip drip drip of glucose. Industrial Basal is going to be too heavy for you. Okay. In layman's terms, right? I mean,

Scott Benner 10:06
listen, I'm it's not a it's not a deep dive into how the liver works. But it is something I don't think people think about for certain,

Jennifer Smith, CDE 10:13
you know, and I think it's something that often isn't even brought up like I, I try really hard with a lot of the teens and those heading off to college that I work with, I try to bring up alcohol at some point, because it will come into the picture. Yeah, I mean, unless you're unless your kid has really sworn off because they just don't have any interest in that. At some point, alcohol will be something they need to think about. And it's really important that they know better how to adjust if needed, than just say, Well, I'm never going to do it.

Scott Benner 10:48
Right. Okay. Does this. Does this need a bigger episode? Or? What do you think?

Jennifer Smith, CDE 10:56
Come on. What do you have more? More questions?

Scott Benner 10:59
No, I just I don't know if it's, I don't know. I mean, it's like, you know, if you're, if it's beer, beer has carbs. If you're drinking, you know, some harder liquor, there's no carbs in them. But you have to look and see if you're going to add fruit juice just seems like maybe I could understand that when I start. But what happens when I'm like three drinks into it? Like, where do I? You know, what do I do when the when the room starts spinning? You know what I mean?

Jennifer Smith, CDE 11:22
Right? I mean, the big things with alcohol, too, that we always recommend is definitely have something to eat with it. Right? So it's not just alcohol. I mean, you probably know that. Or maybe you don't, I don't know, whether you drink or not. But if you don't, if you drink something on a pretty empty stomach, the impact of that alcohol is faster, right? You will feel the impact. Versus if you have it with a meal or at the end of the meal. Are you drinking along with the meal? It's much of a dumbed down. Impact. Yeah, which meal so then if you were expecting the impact of alcohol may lead you to drink more, because

Scott Benner 11:59
I'm also that there might be people who are wanting to get to that spot, too. It's a really difficult thing to talk about, because you're talking about it from the perspective of how do I do this responsibly? And I don't know that everybody starts an evening of drinking with that in mind to begin with, right?

Jennifer Smith, CDE 12:18
Correct. And you also have to consider like, I much feel like if, and I've only been drunk a handful of times, I'm not a drinker. I I'm, in fact, I came, I think the last time I was drunk was probably at my brother's wedding in Aruba. And that was a long time ago. And it was a lot of fun. But feeling drunk, feels very similar to a low blood sugar. Okay, those tip sees types of and maybe that's not a symptom of yours, but I very much have a similar feeling with alcohol as well as with a low blood sugar. Yeah. So then comes into the equation, you're also already not really thinking very well, because you have alcohol on board. Is your symptom of being drunk? Also a symptom of a low that you're not paying attention to?

Scott Benner 13:15
Yeah. And how are you going to be able to handle that, um, so I'm just thinking of a person I met recently, whose son was away at college and was not a drinker, not a drinker, and then all of a sudden, one night just dove headfirst into it. And then this person had to, like, drive to a place to like, rescue the kid and take them to a hospital. Yes, you know, because then the next problem is, is that you're now around a bunch of drunk people, no one's going to be able to help you. Like, you know, you. It's not like you have a designated, what if my blood sugar gets low person here? You know, right,

Jennifer Smith, CDE 13:49
right. I mean, it's a reason in college that I 98% of the time, I offered to be the driver, when we would go out. And I might have knowing that we were going to be out for a fair number of hours, I might have like, half a beer when we got there. And then I had nothing else the rest of the night giving it a good like four hours of clearance time to be able to be like the driver hole.

Scott Benner 14:16
I can say with confidence that in my life, I haven't had the equivalent of a case of beer. Like I just don't drink for no reason that I can particularly point out to you other than it's not interesting to me. It's just not a preference. Yeah, it's not for me, I just I don't know, like I don't even know how you like consume that much. Like I have a bottle of like, flavored like peppy water here. And if I tried to drink this whole bottle, I'd be like, oh, like it can't really be too much. happens when you start putting like hops and barley into it. I'd be like, Oh, I'm so full. But yeah, but anyway, all right. I appreciate this. I know it's it's not an easy. It's not an easy conversation, because there's a lot of perspectives that that need to be taken into account. But I think in general, I mean, at least you could Try to follow what Jenny was saying about decreasing your basil. And, and, you know, I would add, you know, you gotta have I would want to have somebody there that understood my diabetes a little bit who wasn't drinking, but

Jennifer Smith, CDE 15:12
correct? Absolutely. And I mean even people ask even about wine, you know, a glass of wine, typical table wine is somewhere between three to five grams of carb, per you know, glass, should you cover that? I think a lot of it is also experience, right? What do you know about what has happened and along with what you said, make sure somebody is there who knows, you knows you have diabetes knows how to help you if you don't seem to be acting, the way that you normally would be acting. Because all of those things very much like all of the things with diabetes in general, take a little bit of experimentation. And you have to figure out what works the best for you.

Scott Benner 15:54
Let me let you I know you have to go. But let me ask you this, because I think I remember that this is true. When I'm drinking my glucagon won't work as well, right? That is right. Yeah. Okay. So if you're thinking doesn't matter, if I pass out, I'll just use my glucagon, it might not help. It will. I

Jennifer Smith, CDE 16:13
mean, will it turn things around versus nothing at all? Yeah, but it's not going to be the the same impact from what I recall. And I would I mean, it certainly would look it back up, but I'm quite certain nothing has changed about the recommendations and what we know about your glucagon kit and alcohol in the mix together.

Scott Benner 16:33
Yes. So read the label on your glucagon if you're expecting it to save you when you're, you're drunk, because it might not be as impactful as you're hoping. Okay. That somehow we made drinking sad, and I'm sure everybody oh

Jennifer Smith, CDE 16:51
well, people don't see us so they can't tell whether we're smiling or

Scott Benner 16:55
having a great time talking about I'm like, I just started thinking like we're taking the thing or people like oh, my, my Saturday night happy place. These guys are bumming me out. All right, well, thank you so much. G voc hypo pan has no visible needle, and is the first premixed autoinjector of glucagon for very low blood sugar in adults and kids with diabetes ages two and above. Not only is G voc hypo pen simple to administer, but it's simple to learn more about. All you have to do is go to G voc glucagon.com. Forward slash juicebox. G voc shouldn't be used in patients with insulinoma or pheochromocytoma. Visit G voc glucagon.com/risk. And the diabetes variable series began I guess technically at episode 231 with the pro tip called diabetes pro tip variables but then the variables proper began at 491 with trampoline followed by temperature travel exercise hydration, food quality leaky sites and tunneling video games stress masturbation school bedsides, growth hormone sleep pump site placement, a full moon diabetes tech weight change Walmart, the final episode sort of the last episode menopause and today's episode, alcohol. Check them out. They're all available in your podcast player. We're at juicebox podcast.com. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox Podcast. And now I will sing the simple version of your Grand Old Flag for the Fourth of July. You're right Grand Old Flag Euro Hi Fi in flag you're forever in peace may you weigh in. You are the emblem of the lion that I love the home of the free and the brave. Every part beach true neath the red, white and blue where there's never a boast or brag. Sure Should old acquaintance be forgot. Keep your eye on the Grand Old Flag. Never had a lesson one take for those of you who don't live in America or hate us. I'm sorry about that. Actually, for those of you with ears, I'm sorry about that. Please don't unsubscribe. I'll be back very soon with another episode of The Juicebox Podcast.

#945 In the Loop

Mike has type 1 diabetes and he knows a lot about Looping.

+ Click for EPISODE TRANSCRIPT

Scott Benner 0:00
Hello friends and welcome to episode 945 of the Juicebox Podcast.

Today I'll be speaking with Mike He is an adult living with type one diabetes who is very involved in the looping community, the DIY, do it yourself, looping community, Mike and I are going to speak about loop and Omni pod five for a little bit today. If you're interested in algorithms and insulin pumping, this one's for you. While you're listening, please remember that nothing you hear on the Juicebox Podcast should be considered advice, medical or otherwise, always consult a physician before making any changes to your health care plan, or becoming bold with insulin. If you're interested in building a foundation for better health, check out my link for ag one and it's a new link. Drink ag one.com forward slash juice box. When you start with ag one with my link you'll get a free one year supply of vitamin D and five free ag one travel packs with your first order drink ag one.com forward slash juice box and get 35% off your entire order at cozy earth.com. When you use the offer code juice box at checkout. There are links in the show notes and links at juicebox podcast.com to 81 Cozy Earth and today's sponsor. This episode of The Juicebox Podcast is sponsored by cozy Earth. I am right now this second on my way to a movie as soon as I record this ad I'm gonna do a movie with my family. I just pulled on my cozy Earth joggers because it's the most comfortable thing I can think of to go hang out that movie theater with I'm going to have on the sweatshirt from cozy Earth. I'm going to pull on the joggers. I'm going to watch me a film. And when I get home tonight, I'm slide into my bed with my cozy Earth sheets. And I'm going to take a shower and warm and dry myself off with my cozy Earth pals. I am not making any of this up. They are really cozy, cozy earth.com use the offer code juice box at checkout. The podcast is also sponsored today. By touched by type one touched by type one DoD word. They have a big event coming up in September that I'll be speaking at. I hope to see you there touched by type one.org. Why did I get the VIP? Oh, let's Did you because I was out of days? Oh, yeah, I just I was literally. So the um, so every year, I might leave this part. And just so you know, every year, I consciously think don't don't book the show so much that you can't add somebody like I have this real like, don't do it. Scott Don't you know. And so I start every year out very carefully, I put out a link at the beginning of the year, I say, Hey, we're gonna we're gonna book like the first six months right now. But then I'm not gonna book the next six months until, I don't know, June or something like I'm gonna wait a little bit. And so many people reach out with so many great ideas and stories and from different walks of life. I just keep going. Yeah, yeah, like, sign up for that sign up for that. And in three weeks, you can't get a recording until like October. And so by the time March or April rolls around the years full already. And then people reach out that I still want to have on the show. And I'm like, alright, well, I mean, I don't record on Mondays, except for with Jenny or something special like that. So go ahead, just take this special link and go ahead and take something on Mondays. And then before I know when I give away Fridays. And then before I know that I'm recording the podcast every day, five days a week and getting to the point where I did somebody on Saturday night the other day, because I just I don't know how to say no. So I want I want that problem. Yeah, I love that. I love making the podcast. So anyway, you ended up with the VIP link because I was out of days. But also, you're a VIP, like hell. Well, thank

Mike 4:05
you. Yeah,

Scott Benner 4:06
whatever your mom told you about you being special is 100% true. You go ahead Introduce yourself whenever you're ready.

Mike 4:14
Hi, Mike. I've been type one diabetic since 2003 How old are you? I am 32 You're 30 No 31

Scott Benner 4:29
You're 31 When will you be 33 that that confused you?

Mike 4:33
Oh no, I am 32

Scott Benner 4:35
Nevermind 32 Okay, my whiteboard is already a mess.

Mike 4:42
Like my birthday is in 90 So like the last digit matches like my your age, but only before after the birthday. So I got to think like right is it before after my birthday?

Scott Benner 4:54
You were born the year after I graduated from high school. Well, that doesn't make sense. So if I had 19 add to this. Oh, baby, let's make sense. 1011 Carry that it's the one I wasn't carrying the 1345. Yeah, that makes sense. That makes sense, meaning that simple math holds up yet again, like, I want to see the proof. Well, if I took a picture of it, then everyone would know how bad my my penmanship was. And I don't want that, either. So, when you were diagnosed, was there like, Oh, I'm definitely gonna get this because all my brothers and sisters have her or have seven uncles that have diabetes, or was it a surprise?

Mike 5:34
No complete surprise. There's, like at the time, I don't think there was any real autoimmune known in my family. Now, my grandmother passed. About a year ago, she had Alzheimer's. And then also type two, which I guess isn't connected. And then my cousin on that side also has lupus. And my keep going, my grandfather on my dad's side has rheumatoid arthritis or head. He's also past the past year. All

Scott Benner 6:15
right. Okay, well, yeah, you were one of you was gonna get something lucky, you might.

Mike 6:24
But I think all that happened after I got diabetes. So we didn't, didn't have the warning. So

Scott Benner 6:29
all of that happen in meaning that you realized it, or she developed Alzheimer's late. Lupus happened since you had type one. I mean, your grandfather's had arthritis his whole life, but they diagnosed it as RA or what do you what do you mean by that?

Mike 6:49
I just made like I was, I had diabetes. First before anyone else was diagnosed with anything.

Scott Benner 6:56
Okay. Well, then you will. I mean, I also

Mike 6:59
I didn't know that the autoimmune connections until listening to your podcast.

Scott Benner 7:03
Oh, okay. I see. So there would be even you might even know, my grandfather's got, like, arthritis really bad might be how people think of it.

Mike 7:14
Yeah, and I don't know if he actually had a diagnosis or not. I just know, that's what my parents had said is that he had Ra. And my brother might have it, he might not. He's got some joint issues that he's trying to work through right now and figure out but the doctors keep running in circles. Yeah,

Scott Benner 7:31
that's what happens. I think that everybody, honestly, it's a shame. Have you heard Jenny talked about how she manages it with her diet?

Mike 7:41
I think I remember like, she doesn't eat, like dairy. Eggs or RA or something

Scott Benner 7:47
is some nightshade things and it's in her she's an episode about how she eats and she talks about it in there. But I wish her brother luck. It's not. It's not fun, that's for sure. Okay, but you just type one. And when you're diagnosed, how I mean, I could figure it out, but just telling me how old you were when you were diagnosed?

Mike 8:07
1212 That's like, sixth grade. Yeah.

Scott Benner 8:13
Was it a situation where the management of it was given to you or did your parents handle it?

Mike 8:21
It was like, they they helped me in the beginning figure stuff out my mom's a dietician. So like she helped lift helped me with carb counts and figuring all that early on. Of course, I didn't know until listening to your podcast about fat and protein and other things that can affect it. So it's just counting the carbs but you think it was pretty much but yeah, me for Well, I guess. I think in the beginning, it was more so like someone else would figure out the dose or like my mom for the first six months while I was still on injections. But then as soon as it moved over to the pump that was just putting the carbs press Bolus, eat your food

Scott Benner 9:03
in the cars and so there's no Pre-Bolus thing there was no adjust no adjusting after meals if blood sugars got higher or did you even test afterwards to see where they were?

Mike 9:13
I occasionally test after and like if I was high I would like I'd put the number in the pump and if the pump said correct I'd correct

Scott Benner 9:22
okay, well that's something did you hate it as a child? Did you not mind it? Do you remember?

Mike 9:29
Um, I I'm pretty good at ignoring things. I feel like I did an okay job. Like Maitland sees I was looking back through and it saw like consistently in the sevens. I think the highest was like 8.2 the lowest was like 7.1 so it just kind of like shifted around in there. I feel like it would have been a lot lower had had been told the Pre-Bolus But yeah,

Scott Benner 9:57
how did you feel growing up like physically Did you feel healthy?

Mike 10:02
Yeah, I didn't, I didn't notice any problems. I wasn't like a super athletic kid. I was, you know, I'd play sports and stuff, but not very athletic, up until like high school where I could get out of Pe by joining band.

Scott Benner 10:20
Like, I just want to dig into that for half a second. What does it mean that you played sports? But you weren't athletic? Were you the, were you the guy that we all looked at? And we're like, I mean, we like

Mike 10:29
yeah, I was I was the one dancing in the outfield. They're like spinning around in circles and the ball get hit and be like, oh, there's a ball, I should go catch that.

Scott Benner 10:37
We like bikes, and we're going to tolerate this, but he's not going to be here long term. That was the feeling.

Mike 10:42
It's neighborhood organized sports, you can't kick a kid out.

Scott Benner 10:46
You'd be surprised, Mike, but I hear what you're saying.

Mike 10:50
Maybe for being a nuisance, but not just for not being good. Can't

Scott Benner 10:53
you just make it very uncomfortable for them until they leave?

Mike 10:59
I'm also kind of like a pleaser. So it's like, you know, my parents like sports or so they think baseball is important. And I did not. I'm kind of like, I can go with the flow with things a lot. Like even if I don't really enjoy something like, I didn't hate going. Can I Can I ask if I had the opportunity to leave?

Scott Benner 11:19
Yeah, let me if I had the opportunity to leave, I'm just getting the hell out of there. If I might, I know this is not really why you're here. But you and I talked before you came on, we might not actually have a reason for you to be here. So I can talk about whatever I want. Can you tell me a little more about that? You understood? How that baseball as example was important to your parents? They told you or they were just big fans of it? Or how did you know?

Mike 11:46
I don't know it like my dad's just always thinking, watching sports. Like, you know, you'd be excited for me to go play baseball, or I don't think it was also like they would encourage just because, you know, it's better to have your kids go around play sports get energy out, rather than sitting on the couch,

Scott Benner 12:07
or cooking math or something. So as 12 year olds tend to do. So she they wanted you to be active. Do you think they picked baseball? Or do you think you did?

Mike 12:21
I don't really remember it was more like that started in like T ball. So a failure. It was probably just like, hey, there's a team. Go join that.

Scott Benner 12:31
scale of one to 10. Mike, how good were you?

Mike 12:35
Oh, probably. We'll give it a two. Okay. Okay. All right. I could catch a ball and throw it but you know,

Scott Benner 12:41
do you ever remember a coach looking at you with disdain?

Mike 12:45
I don't remember. But I'm sure even if they did, I just went right over my head, you just wouldn't

Scott Benner 12:50
have cared. I'm really like now, I'm not trying to be amusing. I'm trying to like trying to gauge whether it's like as a young child, if you were taking yourself to this place and thinking, Well, my dad likes it. And I don't hate it. And I you know, I'll do it like, and if you ever looked up and thought, oh, this person doesn't want me here. So you didn't have any of that feeling like you weren't great at it? And didn't. It wasn't something you were excited to do. But But so then my question is, what's your remembrance of it? Like, how would you characterize playing baseball? I don't know. Is it a good? Like?

Mike 13:31
A neutral?

Scott Benner 13:35
Okay, I'm asking like, I'm asking you an uncomfortable question, because I want everyone who is about to force their child to play a sport that the kid doesn't want to play to hear that in hindsight, this was what you call it wasted time. Because there was there it was there something you could have done at that age that would have been better for you.

Mike 13:52
No, I mean, in hindsight, I think it was good. Like I said, it kept me kept me active kept me moving.

Scott Benner 13:59
All right, well, then they heard it from you, Mike forced your children to play sports even if they don't want to. That's what you said, right? Yeah. Keep them moving. I'm encouraged by that because I've met I know you you know what I mean? I don't know you I know kids like you. And I sometimes wonder about that. I think oh, there's two seasons where this kid just I mean, obviously, I think everybody but their father could not have cared less about this thing did not want to do this and got brought there every day. And it makes me happy to think that somewhere that kid has grown up and and not devastated by the experience hopefully using you as an example. But then you said you joined the band but what did you play an instrument?

Mike 14:45
Yeah, drums. So like marching band counted as Pe

Scott Benner 14:52
How was that for hookups marching band?

Mike 14:57
Uh, I mean, I was just a freshman year of highschool, and then I moved overseas, my dad's in the Air Force. So we moved around a lot. And every high school I went to three different high schools, and each one got smaller and smaller, and the bands got worse and worse.

Scott Benner 15:12
Did you stop going?

Mike 15:15
I kept playing. I really didn't like the last my senior year, because it was like super small schools like 200 300 kids maybe. And the band teachers spent most of the time talking about like Broadway or something nobody cared about. And I was the only percussionist so there'd be like, here's seven different instruments that are supposed to be played. And I'd be like, How many can I play at the same time?

Scott Benner 15:40
You kids don't know this, but I was the dog in a production of my fair lady in high school. By the way, is there a dog in My Fair Lady?

Mike 15:48
I don't even I don't think I've seen that.

Scott Benner 15:50
I don't know either. I just made that up. I feel let's just roll with it. Pretend there is now there. Damn. Right. As everybody's listening. It's like it's fine with me. There was a chihuahua running around the whole time. Well, that's interesting. I mean, it's interesting that that it's an it sucks a little bit that you found the thing that you liked, and then because of moving around, and dwindled on you, so you're not a drummer anymore?

Mike 16:12
No, I still drum. Oh, nice. But like, drum set, like in bands and stuff. Oh, it's

Scott Benner 16:18
excellent. You do play you play in bands? Yep. How does that

Mike 16:22
not at the moment, at the moment, I'm in between bands, but COVID kinda ended things like make things a little more difficult for a while and that band ended but yeah, I'm in for a new one.

Scott Benner 16:33
Nice. You off to college then after that?

Mike 16:37
Yeah, yeah. Went to college straight out of high school. And they were still in Germany. So and then I went in Florida to college.

Scott Benner 16:45
Did you feel any pull towards the air force or pressure?

Mike 16:51
Well, I was diabetes, so you got out of it. So in the Air Force anyway.

Scott Benner 16:55
How about your brother? Is he in?

Mike 16:59
No, he considered it for a bit but ended up not?

Scott Benner 17:02
Do you think your dad was more disappointed that you guys didn't go in the Air Force or that you couldn't play baseball?

Mike 17:08
I think he's pretty happy with this no matter what.

Scott Benner 17:11
It's a very healthy answer. Mike Good for you. I would have chosen if you gave me if somebody threw a bullshit which is what I just did choice that me I would have chosen I would have been like, I would have thought about it for a second and pick one is very healthy

Mike 17:25
weight, which was a see all the above is very healthy

Scott Benner 17:29
choice was excellent. I'm so thrilled that that's how you answered. Okay, great once you go to college for

Mike 17:37
I started electrical engineering and then the first semester I changed to computer science.

Scott Benner 17:44
And are you able to employ that education in the in the adult world.

Mike 17:49
Um, I worked at a place developing or like taking other iPhone apps and like keep updating them or for about a year, two years, maybe after college, and then I switch to another job where I print and scan stuff for lawyers. You enjoy that there's a lot of it pays the bills and it's it's something different every day. Like, I've been there like six, seven years, and there's always something like new that'll come in and be like, alright, I don't know how to do this. Let me figure out a way to do it easier quality or

Scott Benner 18:26
problems not it's not it's not just repetitive it's, it's something you can actually employ your brain with. Yeah, it's

Mike 18:33
like a mix between repetitive and not because some days you'll go in and you're literally just feeding paper into a scanner for like the entire day. Oh my god. But then the next day, it'll be something completely different. So

Scott Benner 18:45
here's my next, my next false choice for you the job or we're having to play baseball again on the schedule of a child which would you prefer right now?

Mike 18:56
What's much rather be at this job than play baseball.

Scott Benner 18:59
That's what I was getting. Okay. Alright, so you manage your diabetes? Sounds like pretty much on your own. Were you doing that MDI with a pump?

Mike 19:11
mph for the first six months and then as soon as we could get to a pump, we got a pump.

Scott Benner 19:16
Okay. Do you have a CGM now present day?

Mike 19:21
Yeah, I do now. I think I started maybe senior year of high school, maybe freshman year of college. I can't remember when I first got to CGM, but um, I was Medtronic up until a year and a half ago. So it was basically I treated it more like a don't die alarm. Like if it beeps look at it. If it's super high, then start adding corrections because I think you know, my it probably didn't beep until 200.

Scott Benner 19:48
How would you describe your your management in that time? Your management style like were you on top of it? You know, were you a person who was like I'm not, you know, 200 is my number, you can't go over 200 when it got to 200. Were you worried? Or did you feel like an intensity about how to handle it? Or just was it just part of the day and you just did what you did and didn't think about it?

Mike 20:14
Yeah, it's kind of just like in the background. I tried not to focus on it too much. But like, you know, if I thought something was wrong, if it beeps at me and says, I'm Hi, then I'm going to Bolus but then I probably won't look at it for another couple hours or until it beeps again. I see. And I'm pretty good about changing settings and stuff. Like if I'm, I noticed that I'm consistently going high after dinner, I changed my ratio, change basals and stuff. So a lot of times, that wouldn't be until like, you know, every three months, you'd have your endo appointment, and then I'd look all over the stuff like right before the appointment and wait that three months. And then I change it all and then go in and they'd be like, oh, yeah, that sounds good. You can change it to that. Or you could move this a little bit.

Scott Benner 20:59
Not incredibly helpful. At the end of this office.

Mike 21:07
Yeah, no, I mean, like a little bit, but I never really found too much use out of and two appointments. Yeah, like now I go. About once a year, a little more frequently, like nine months.

Scott Benner 21:19
Get your scripts. Yeah, basically do anything. When do you find the podcast?

Mike 21:28
Well, I just looked in the in the app. Not too long ago, we needed that Spotify end of the year thing? Yeah. Because I was on Apple podcasts. And it said, I listened to the first one in January 18 of this year.

Scott Benner 21:41
Oh, so you've just the year for the podcast for you. Yeah, interesting.

Mike 21:46
I swear, I heard the fatten protein episode in December, like a couple of like a month before that. But maybe I listened to it like on the website instead of podcast. Right?

Scott Benner 22:01
So you see, I mean, 2003 2022. So for a long time you live the way you live? And get did finding the podcast change? I mean, if it changed anything for you, what were the things that you adjusted?

Mike 22:21
Well, I found thinking like a pancreas first. And then, so like I learned like Pre-Bolus and a lot of good stuff from there. And then listening to the podcast just reinforces that a lot. As well as add a lot more stuff like the crush it and catch it. While I've you know, kind of done that before. I didn't really think about it as much. You know, it's just like more of the rage Bolus, and then you go low, so then you feed sugar. Whereas now it's like, okay, I know I can just give a massive dose and then like, so loop now. So I can look like right now I need to put in the carbs now. And then it'll even out before I get low. And let

Scott Benner 23:02
the loop jump in. How long have you been looping?

Mike 23:05
Since almost two years now, years, which is when everything, Eric actually I guess the first big switch was getting a Dexcom. Like I was, I remember watching seeing commercials for it on TV commercials kept coming up. And then it kept telling me like, you don't need a finger prick. And I'd be like, bullcrap, I know you need a finger prick, because I have to ferment Medtronic, like he still got to do it once a day. Like it's better than having to do it as much but. And I just kept ignoring the commercial, because I kept thinking that like, they're quite right. When I finally looked into it, working from home and COVID. So, a lot more time on my hands. I looked it up and I was like, Oh, you actually don't need to calibrate this thing. So then I got that. And then I was I also hesitant to get it because I wanted. I like like I've always been trying to get the next best thing, but it's always a Medtronic. Up until recently.

Scott Benner 24:05
Is that just what your doctor's office gave? You? know, it's

Mike 24:09
I mean, that's what it's, well, no, it started out. I remember I think my mom picked the like, she went to a thing and they had the Animus ping or the whatever the Animus one was and a Tronic. And like she thought the the only perk of the Animus that she saw was like it said pizza in it. And then the Medtronic said square wave for dual wave, right? And she was like, well, he can figure it out either way, and the reps seem to like Medtronic better. Yeah, I got with that stuck with that a while. And actually the last Medtronic I got the dreaded six seven D. My endo tried to convince me not to get it. But I was like, No, this is this is the new best thing. This is going to be auto mode. This is going to figure everything out. It's going to be easy sailing. And I was very wrong.

Scott Benner 25:01
All right, we're gonna dig into a couple of things. Here I have notes. My first thing is I want to, I want to say, I know a lot of people because of what I do that, you know, work behind the scenes that companies like, you know, Dexcom. And in places like that, and a lot of those people who make those television ads and whose job it is to try to reach people and and send the message to them that they might want to check more of it out. And I think any of them that heard what you said a second ago are still banging their head against the desk. They're working so hard. They're like, Hey, listen, just come check this thing out. Here's what it does. And you're at home gone. No, it doesn't. wires. Exactly. What I said, is people crankies people, Mike are killing themselves, trying to make people just learn about a thing. So they can decide if they want to do it. And I guarantee your answer just that it ruin their whole day. They're just like, I Why am I trying? Why do I give up? I actually, you might have seen this online. But I just put out an episode the other day with Jake Leach. And this is going to be six months later after people when people hear this but Dexcom G seven got FDA approval. And I hustled my little butt around getting Jake on to talk about G seven and go over all the questions that I had, you know, people gave me through the Facebook page, I had a couple questions on my own. I put together this really tight 30 minutes with just rapid fire great questions. His answers are super clear and valuable. We'll help you make decisions about what you want to do or what you don't want to do. And then the next part is I put it online, and then I have to support it through social media. My job is repetitive too. So I you know, put a post on Facebook, I put a post on Instagram, put a post here and then I and then I involve myself in conversations with people and try to answer questions and point them in the direction of the things they want. It's a bit of a, it takes a lot of time. And in the end, what I want is for people to listen, I made a thing. I think it's helpful for you. If you think it's helpful, I'd like you to listen to it. The other side of it the business side of it is I need people to listen to the podcasts that they hear the ads so that maybe they click on a link so that somebody will buy another ad again the following year so that I can continue to make the podcast It's the circle of life kind of thing. If people don't click on the ads, I lose the advertisers. If I lose the advertisers, I have to go get a different job, you understand. And so, so every time this happens, and I never say like I never speak out loud about it goes on for years, you put up a link. And inevitably, or three or four people come into some sort of a commenting thread and say, I don't have time to listen to this. Just tell me does it do this? And when I see you know, where does it do that. And I see that it crushes my soul. So like you don't know the way the SparkNotes Yeah, I don't want to listen to your little podcast thing just now. I don't want to just give me the answer. But put it here so everyone can see it. So no one has to listen to the podcast. And and what you don't realize about that is that I spent my entire day on Friday getting that out to you in a timely fashion. I did not eat dinner with my family because of that.

Mike 28:17
We posted those questions and it was up like the next day.

Scott Benner 28:20
I hustle Mike, you understand? I grew up a sheetmetal shop. I take that attitude. I applied to podcasting. So I'm a hard working like person. And then it just I don't I put up this what I thought was a funny post about like, are you people I put it up as a poll. Are you people trying to kill me? Oh, I

Mike 28:37
am not trying to kill you. I think you might accidentally voted for yes. Because I wanted to see who voted for yes. And I was like, Oh, wait, no.

Scott Benner 28:44
Well, overwhelmingly, I think there's like 500 votes that people were not trying to kill me. But not the point. I'll

Mike 28:51
take this one. Yes, though. Once successful, yes, we'll do it.

Scott Benner 28:56
You mean to get me dead or just to make me feel badly about it? I don't, because I don't feel badly about it that you should know. i It's to me, it's like, Oh, you shouldn't it's all in fun. You know, and, um, but I did. It is an exam, it is an opportunity to, to let people understand kind of the back end of this thing, which is, you know, if you like the podcast, I'm happy like, and I want you to like it. I am trying to help people. If you heard me speak privately, you know, this is the time of year where I mean, this is the time of the year where I'm renegotiating with all the advertisers. And inevitably, in every meeting, I say every year, I can't believe how lucky I am I do this thing that I really enjoy and love. It actually helps people and it pays my bill. I have bills that get paid because of that I can like send my kids to, you know, the grocery store. And I feel very lucky about that. And then somebody comes along a person who, you know, has been around for a really long time. And it was like This is all about money to you. And I was like, what? In the hell are you talking about? Like, if this was all about money to me, I would have put this ad, I would have put this this episode together slowly over days and given it to you sometime next week, which, by the way, is what everyone else will do. They don't they're not in a rush and released it on Patreon or something. Yeah, right, or, you know, put it here and there. And we're charged you to do it or do it some shows do which is give you like, 10% of the information and then push you towards a coaching service or something. And I was like, That's so not me. I'm so transparent. And anyway, I just don't know, it's, it's not easy to do. The marketing of your content. It's not as easy as it might look from the consumer side. We're like, oh, I you know, I, this guy on YouTube, I really love he talks about cars that I drive and puts up an episode every week, and it's well produced, and you just kind of take it for granted. But that person is probably spending. I mean, I spend 70 hours a week making this podcast. And then you know, and then we're like, stop pushing your links. And I was like, Look, if you don't click on these fucking links Mike Marino podcast, like, like, I don't do not understand how the world works. Like, I can't just, I got a family. You know what I mean? So anyway, I don't know, like, I was trying to,

Mike 31:23
I think I think Dexcom should start putting you in their commercials be like, This is our product. But if you want to know how to really use it, check out that Juicebox Podcast? Well, I'll tell you on the positive, you can get a put out to whoever watches TV. Well, on

Scott Benner 31:37
the pod made the three on the pod five episodes with me this year. That was yeah, those are good. Yeah, it was a lovely, like partnership there between those. I think, if I'm being honest, I stay on the periphery of that space. Like, you know, companies don't put my face on things. But it makes sense to me, because I don't I don't have diabetes. Like you can't you imagine the backlash they would get if they were like, Hey, this guy follow him? You don't I mean, like, Does that bother you at all that I don't have type one?

Mike 32:12
No, not at all. Because of all the content that I get out of it. Like, I don't really care who's telling me as long as it's good information.

Scott Benner 32:20
I mean, that's makes that makes sense to me. But I don't know where people's sensitivities lie, you know, and they overall, it hasn't been a problem for me. I just imagine. It's my imagination that people sit in the room in a meeting and they go, who do we want to put on this? And somebody goes, that podcast is very popular. And then someone else says he does not have diabetes? And I bet you that puts a stop to it every time. You don't I mean, I feel like

Mike 32:43
it's it's almost even better that it's that you're the caregiver rather than the diabetic, because I feel like a lot of the times are, it seems like some parents are like, super into taking care of their children like you. So it's like, focus on every detail, make sure everything's right, figure this out. Because you're hearing about another person, whereas like, for, like, in my case for myself. Up until like two years ago, it was just kind of like, well just try something if it works, it doesn't just try something else.

Scott Benner 33:15
In that vein, like it's not as fine tuned. Yeah, in that vein of thinking, what is what was, I guess, like, go back a couple of years. When you think about managing your health, around diabetes, specifically, what's the goal? Is it a daily goal, a yearly goal, a lifetime goal.

Mike 33:40
I mean, like, ultimately, the goal is just to live without complications as long as you can, or to minimize the complications. And then, but then there's, there's so many different data points now, especially now that I have all these different naps and Dexcom. And so like, now I like every day, there's a goal to hit for like your time and range or, and then you can shift that into different ranges be like, your 70 to 140 range should be some number and your 70 to 180 number should be a different percentage. And then there's a one C there's standard deviation. There's a lot of goals now.

Scott Benner 34:24
Yeah, well, there is do you think of your diabetes as a in the moment thing? Is it a big picture thing? Is that a blend?

Mike 34:37
Me I think it's got to be a blend, because your sugar affects you now, but it also affects you later?

Scott Benner 34:43
Well, yeah, it definitely has to be but how do you think of it? Like, like, overwhelmingly what is most of your time spent doing? Like don't get low right now? Don't get high right now. I want the week to be good. I want the day to be, you know, in range or like, you know, I'm trying to figure out out, help, it's probably

Mike 35:01
more immediate, like what's going on right now? Or like, what's go? What's about to happen? Or what just happened? Like, the next hour in the past hour? And now? Because you can't really change stuff for next week. I mean, I guess you could, like bagels and stuff like overall, but

Scott Benner 35:22
yeah, I you don't even know like so is that you brought up that, um, you know, the parent of someone with type one and my my role changes drastically as she gets older, right. But my vision of it, my perspective on the issue is completely different than hers. Because I hold all the perspectives at the same time. I want her blood sugar to be stable and steady and low now. And I'm worried about her future. Both in the short term and long term, I'm worried about how she'll deal with this while she's in college, will she keep focusing on it? Will she not? Will she give it away at times to do other things, which I expect? Will that translate into her her young adult life as I got away with it in college, so I'm not going to put too much effort to it now does that go into her late 20s That she started having problems when she's 30? Like, when I when I think about Arden's health. I think of it the same way I think of my son going to college and meeting people and maybe having a relationship and looking for a job like I see the whole like, Mike, you don't do you have kids? Yeah, no, you worry about the entirety of everything when you have children. I don't think of it as worry. For me, I think of it is concerned, it's considering I'm always considering the whole thing. But I don't think that as an adult living with type one. That that's the same for everybody. I mean, I've spoken to a lot of people. And I think overwhelmingly, that's not how people think of it. I think it would be too much to think of it that way. I could see why you wouldn't. But I also think that a certain amount of that is what leads to these outcomes that you want. So it's just interesting for me to hear from an adult about how they like conceive day to day of diabetes. That makes sense. Yeah. Yeah. Okay.

Mike 37:24
And, like I said, for the, like, the consideration also changed a lot once once I got Dexcom, because then it's on the phone, because like, even when it's on the pump, like I'm not looking at the pump a lot. Like I said, Whenever it would be, I'd look at it. But now that it's on my phone, it's on my watch. Like, I can see it a lot more often. So it's a lot more. There's a lot more management or like things to do. Yeah, but I'm trying to say,

Scott Benner 37:53
but that stuff helps. And that's what I want to know, like, being able to see it more readily on your watch, for example, not having to dig into even an app or do a blood sugar test or pull out a meter or something like that. Having it there helps. Having goals helps having an app that says hey, you're in, you know, we're our time and ranges, you know, 60%, and it's 40% here, and we're low 5% of the time, or whatever the numbers are, like it gives you something that you can kind of quickly focus on. But then do you adjust after that? Like when you see it, if the numbers not where you want, do you consciously think oh, I've been high too much this week? That's probably because I ate out a number of times, I didn't have a lot of success boasting for my meals or like, do you give it that much thought? Or do you just think, Oh, I've been high a lot, I don't want to be high as much.

Mike 38:43
Yet. Now I do. So now like about once a week, I'll look back at in Nightscout. Like, I'll look at like the daily reports and kind of see what the trends have been. Like, if I'm more consistently higher or lower in a certain timeframe, then I'll adjust either basil or carb ratios or ISF

Scott Benner 39:05
I'm excited for. But then I'm

Mike 39:09
also like tweaking those in the moment too.

Scott Benner 39:13
Yeah, like when something just goes the way you don't expect it to you you're in the moment helping it and then big picture, you're looking at it as well.

Mike 39:20
And I'm I'm a pretty competitive person too. So like having, like having all these stats to like, when I zoom out, I look at my management now. And I'm like, Oh, I'm doing pretty good. I'm like, you know, 91% between 70 and 180 75% between one and 130 or 70 and 130. But then when I zoom in and like the day to day I feel like I'm always like, Oh, am I again? I'm messing up fix it. I'm low again messing up fix it. But like when I zoom out then I'm like okay, overall it's it's going well

Scott Benner 39:59
yeah, it's I think of it the way I do because you're 100%, right? If you look at any 24 hour graph, most of the time, you're gonna be like, Well, what happened there? You know, and then you look back over a month ago, the month was good. So if that day existed within that month, you think, Alright, well, the month was good. But there's things happening during the day that I'd like to have a better handle on. And which one, I think the problem is that the people can just then go, well, the 30 Day was good, I won't worry about a spike to 240 that lasted five hours. And so that's why I think like thinking about it super simply, it works best for me. I'm not, you know, I'm still in the middle of trying to get Arden to think the same way I think about it. Or if I can't, I'm going to have to find a way to take the way she thinks and apply it to diabetes and adjust that, or she's going to have to find that maybe more specifically, right? Because for me, give me you've heard me talk about a million times, like just, you know, one of the big people are like, what are the rules of diabetes as far as you're concerned, and it's Pre-Bolus, don't let a spike happen. Understand the impacts of your food. But then right after that, when I say like, stay flexible. I think what I mean by that sometimes is like, you know, kind of go with it just okay, this happened. Let me keep working. But it half of that is Don't stare at high blood sugars. Like that's the biggest thing. Like, I watched art and try to do something yesterday. And she's home from school for the holidays. And I kept she's like, I have this, like, let me do it. And I'm like, that's fine. So I let her do it. But four hours into it. I'm like, I could have fixed this two hours ago. You know what I mean? Like, and I see what she's doing, but it's, as she's doing it, am I good? I ain't gonna work. And so I kind of find a time to walk into a room and I was like, Hey, listen, you know, I've seen what you've been trying to do. And I understand why he did it that way. I'm like, that's not going to work, you're gonna have to do this. And she loops and I said, You got to open the loop. You got to make an aggressive Bolus. And then we got to close the loop again to stop the low, right. So she does that she actually Bolus more insulin than I would have done. She created a fall inside of 30 minutes. And I kept an eye on it was later at night. And she was up and I sent her a text. And I said, instead of saying, like, close the loop, I said, What do you think? Does it look like it's time? And let her decide. And then she closed the loop off the loop, the algorithm kicked back and shut off the basil caught the blood sugar. And she was like, I mean, I can look. But she was super stable overnight. Yeah, so the drop happened. It fixed itself around 230. And she's been like 90 for the last 10 At least eight hours. Anyway, it's everybody's got to find their motivation, and their style. And you know, and then just, I think then the hardest. It's all that sounds hard. But then the hardest part is after you figure all that out, it's applying it over and over again, without getting just burned out by the whole thing. Oddly, it's like your job really is right? You just keep feeding those papers and that scanner, like, alright, I don't want to do this today. But this is the job and then you do it. And then you look for ways to be engaged by it. Is that right?

Mike 43:32
Yeah, yeah, I think so.

Scott Benner 43:35
All right. Well, if we could pay everybody for diabetes will probably make them more engaged. Do you think just get it? There you go. I get behind that get a nice hourly salary for taking care of yourself.

Mike 43:46
24/7 365 jobs. So

Scott Benner 43:49
like, do you think that would work?

Mike 43:53
Think about probably not, well, no. I mean, even when I was a kid, like I remember my mom giving me like a list of like, it was like a packet of meals that I had to go through and like calculate the carb counts of everything. And I think it was like, I don't know if it actually was, but I think she told me it was like something for her work. And she was like, Oh, I'll pay you to do it. And I feel like the real mastermind plan behind it was like if I could just, you know, pay him to learn more about carb counting. But the money wasn't worth it. Or not not worth it. But

Scott Benner 44:28
Mike was the juice not worth the squeeze?

Mike 44:31
Yeah, there's the idiom. I love that one. That's one

Scott Benner 44:34
of my favorite ones. Why do I love that one because it was taught to me by Charles, this big, very Italian man that that whose son played baseball with my son when they were in high school, not for their high school, but for their travel team. And we spent a number of years together. Standing in the outfield watching our kids play baseball, and he would say stuff like that all the time. He's from from, from the city from one of the boroughs and he'd be like, pow, let me tell you, the juice ain't worth the squeeze. And I it's not what he sounds like, but I'm just approximating it for you. And it's just delightful. It's so wonderful guy. I'm going to tell some story here. That is because you're on and because of what you said earlier. I've never been mean to a child on purpose Mike.

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I've never been mean to a child on purpose Mike. Except for once to get started. And and I want to be clear, this was never to the kid's face. And the kid never knew about this. Never. But my son played baseball with a kid. And again, I've never met a kid that I like it's hard to dislike a child. Do you know what I mean? Like it's just it just it is and and um probably started knowing this kid at the end of middle school, so I don't know how old they are, they're like, ninth grade eighth, ninth grade right there, and all through high school right into going into college and actually, still was tangentially aware of them in college. And the and the, the kindest thing I can say about this person was that he was a dick. He just someone told this kid, I assume, hourly, how wonderful he was, and how everyone else around him was subpar compared to him, either that or he had a significant mental issue, I don't know. But this person believed in themselves in a way that was unwarranted, and, and cruel, to the point where my son said one day that he could hit a ball and got thrown out trying to stretch a single into a double, which he would frequently do get thrown out trying to make a double into his triple A single to double the gauges, just always cocky. And anyway, the kid gets thrown out doing this comes into the dugout, everyone's pretty quiet. Because I mean, it was an obvious situation where this was just a single, like, you would never go to second on this. And he comes in, and he takes off his gloves and his puts him in his helmet, slams his helmet down, turns the everyone in the dugout, and goes, I'm better than all of you. And then just walks away. And that is but one small example of the dickish pneus of this person. This happened constantly, I once saw him hit a legitimate double. He's running the third even though the third base coach, he just has his hands up going stop, go back, like this is not a triple you and boom gets, you know, gets thrown out at third, I swear to you after the fourth time that happened this summer, the kids slides into third gets tugged out. He stands up and the coach goes, What are you doing? And the kid goes, you like like this was the kid, right? So one year, the kid decides that he's so good, he's gonna go to this out of state camp where he's obviously gonna get drafted from because this is how he feels, which by the way was never gonna happen. But he goes to this thing, it's one of these things you pay money to go to, it's not a special thing. It's if your mommy and daddy have money, then you can do it. And he went and did it. And he came back with batting gloves that had the American flag on it. And that is when myself and the other parents started referring to him as Captain America. And then Superman. And then one night, on a Friday night when we got stuck with the last game of the day. And it's 11 o'clock, and the kids are still playing. And we have to be back again at like seven o'clock in the morning. He comes to the plate. And one of the guys pulls out their cell phone and plays the orchestral music from the first Superman movie, Dan, Dan intentar. And like no one knows, but us it's just we're literally we're out in right field. There's no one within 100 yards of us. We're just hiding watching this game. And we just start snickering like little girls. And then it became a habit where we would find big important music to play as this kid walked to the plate and then like children, we would laugh. And I believe that the the the Olympic music, the thrill of victory and the agony of defeat was the funniest one for some reason. They're dead and dead and just have to imagine his kids just you have to you don't know him and I can't but he would stand up so straight, like two straight. And he walked with his chest out. Like like that he just anyway, he was just a deck. He was he was a child that was a deck and I always thought like, Oh, I hope this like not I hope he goes to college and, you know, maybe finds himself or relaxes a little bit. But no lie in my son's senior year of college. They ended up playing him. Same attitude. Same person just kept going. And I was like, wow, that's who he is. It's fascinating. He's a deck. So I don't know I just at some point that had to be put on the record somewhere. So here it is. I just put one kid in the I've never met another kid I didn't like and it's not even that you don't like him. You just you can't root for him. I don't know if that makes sense or not. But um, he's like his worst his own worst enemy or something. Anyways, the opposite of you. You seem delightful. Alright, so hey, I

Mike 54:41
got a delightful.

Scott Benner 54:43
You are delightful. I want to dig a little bit into the Medtronic thing. So you said you got 670 G right, the automated version you're using their thing. It didn't go the way you expected. Why is that?

Mike 54:58
I'm not a very cool sistent person. So having it like an automated black box, change all your settings and do everything. Like if I'm active one week, go into the gym bike ride. And then the next week I'm sitting on the couch like the algorithm doesn't know how to handle that, or like, one day I'll have 300 carbs the next day I'll have 30 carbs. So like if your Basal is more like, not where it actually should be, but because like you can't actually set the Basal on that one, like it takes care of itself. So if you're eating more fatty foods, and not putting the fat in to the cart Bolus, then it's thinking that you're going to need more basil. And then the next week when you're not eating as fatty foods, then you have too much basil. Okay. And the sensor also just, I don't know if it was, it might have been a problem with me not calibrating it correctly, like not calibrating it at a flatline. But also, it's hard to have a flatline a lot of the times, so like it's always going up and down. But with that, when you have to calibrate it, then it's not like you can wait until you get a certain line, it yells at you at three in the morning. And unless you just turn it off.

Scott Benner 56:16
I have to say that anything that is set up to wake me up at three o'clock in the morning, do something doesn't seem well thought out?

Mike 56:22
Well, it may just because like it has an error or something. Or, you know, it's got to be like every nine hours and like if I don't time it right, or I think it was like every 12 hours, it claimed it was every 12 or 24 hours, but it was always way more than that. Like it would say you have 12 hours until your next calibration and then like six hours later, it'd be like, You need to calibrate.

Scott Benner 56:45
Do you do you find the experience with Dexcom to be better or different, or

Mike 56:53
what insanely better, okay, but it's also like, because I started with like Dexcom. As soon as I got that I was like, because I was a little hesitant getting it because it didn't work with my pump. And even before the six, seven D they had the, I forget what they call it, but like it stopped to your Basal if you go if it thinks you're gonna go low. And I like typing that safety feature in it. Of course, when the six seven D, like does calibration errors or overnight or like, it'll just turn that you'll it'll kick you out to auto mode, and it won't turn on that safeguard. To stop your Basal.

Scott Benner 57:26
Yeah. So you think you have to say that you have to safeguard your mind. Like I'm sleeping, at least it'll like sort of like control IQ had Basal IQ first, where are they? Yeah, it was just Its goal was really just not to let you get too low. And then but um, but the problem is the Medtronic would kick you out of automation, if it didn't like where it was. And then this protection you thought you had didn't exist.

Mike 57:48
Yeah, but so as you know, it has a tint going over your Dexcom because like I wanted it to talk to my pump to prevent me from getting low. And I realized, you know, Dexcom can't do that. But then I started looking at I was like, alright, well, how do I at least see the graphs of everything like side by side. So that's when I found tide pool. And then from tide pool, I found loop. And loop it's like, you know, what you tell it to do? It

Scott Benner 58:15
does it shows you everything that it's thinking it's, it shows you like this is what this is how we think your blood sugar is gonna go in the next six hours. Yeah, you don't like the way you're talking? You can fine tune everything. You the way you're talking makes me think to say something I've never said before, which is loop feels like automation, that you're a partner? And if Yeah, if you want to be I mean, you can set it and leave it if you want. But if you want to be a partner in it, you absolutely can be.

Mike 58:45
And you can also go back and like look to see kind of why it made a decision, it made a decision. It's not just this little black box, like you can't even I don't think you can even see like what the basil is we're

Scott Benner 58:58
okay, yeah. And on the pod five, it's a similar idea where they want it to be very automated, and kind of happening in the background. I think it works for who it works for. You don't I mean, and

Mike 59:09
I think if you're a consistent person that it probably works great. But if you're not,

Scott Benner 59:14
I also have to hope. I don't know. I mean, I'm not a computer engineer for certain, or software engineer, but I have to imagine that these are really the first generations of these things. And it does make me wonder what it'll look like in five more years. You know, like, will it be able to, excuse me? Like, will it be able to sense something and just ask you on the screen, like, are you inactive today? Yes or no? Like something simple like that. You know, I'm noticing like, you would think the algorithm could see that you need more or less.

Mike 59:53
And I like how like, I haven't used Android APS but on there like it'll tell you like if you're You're more sensitive or less sensitive than you are previously, so then you can look at it and be like, Okay, I need to increase things or decrease things. And it'll do some of that automatically, I think.

Scott Benner 1:00:10
Yeah, I mean, that's, that's the stuff I'm talking about, like, I mean, they have to let

Mike 1:00:15
you know, the FDA gets involved in and then pushes, like anything they wanted to do, like, you know, tide pools coming out with their, their version for I'm assuming it's still gonna go on me pod if that ever happens, but like, I think the I think the app that they're trying to push through the FDA is like what Luke looked like four years ago. Like they can't put like, I'm using LWC dev now. And like, they can't put remote control in or a bunch of other stuff. Yeah, God Oh, Bolus and like, they got to taper it down enough to get it through the FDA. And then it just, you know, the whole hashtag, we're not waiting movement

Scott Benner 1:00:55
started to wait when it got to the FDA. We're not waiting tide pools, like we're gonna take this and we're gonna go through even when they settled, I was like, how's that gonna work? Okay. I thought, good, go do it, you know, but now, like you said, it's been years. Right? And it, it's not here yet. And I'm Arden's not using the same version of lupus, she was back when they made that. So they have to take some version of the app and say, This is what we're going to send to the FDA for them to judge. You can't keep adjusting what the algorithm does. While you're in that process. Once you're in that process. That's that. What version of

Mike 1:01:34
30 have oh, sorry, go ahead. No, I just didn't like because like, you know, Dexcom g7. Like it's going to be from your episode. I think he said, like, mid 2023, like mid next year for tandem. And like a little later for Omni pod, whereas it already works with loop.

Scott Benner 1:01:51
Doesn't really seven, I didn't even know. Yeah.

Mike 1:01:56
Well, you like it's got to be looped up at like one of the more recent ones. And I think you have to go in and do a little more tweaking, but but you can get it to work.

Scott Benner 1:02:05
Yeah. And and more quickly than you imagined, it will just one day, they'll put out a version. And they'll just they'll be like, here you are using the GSX or the g7. You just tell it and that's it, and then it works. Well, that's the idea of I mean, that's what happens when you put software engineers on to something. And they have to make sure it works. But they don't have to send it out to somebody else to say yeah, you're right, that works. So what what version are you using right now of loop?

Mike 1:02:32
I'm using loop Dev, but the one in the build the fixed. Fix Dev, build script, Nick, it's called?

Scott Benner 1:02:40
Is it? So like? Good?

Mike 1:02:43
So Luke three. And then I'm also using John facets patches.

Scott Benner 1:02:50
Why did you choose those,

Mike 1:02:52
just because I like a lot of the features they have in them, like it'll switch between, like, depending on what blood sugar you're bait, or what your blood sugar is, like, if you're if you set that to 110, you can have it anything under 110. It'll just do auto boat or auto Basal, anything over 110 it'll switch to auto Bolus mode. That way, it'll kind of be a little less aggressive when you're at a lower and you don't have as much time to catch like too much insulin. Oh, I

Scott Benner 1:03:18
love that.

Mike 1:03:20
There's also a Basal lock feature so you can have it so like if you hit whatever you set. So if you set it to like 220 that means it won't cut your Basal off. If it's above that number. It'll just keep it on and like once you're under that number, then it'll cut it off.

Scott Benner 1:03:34
You know, I feel like I just got an email from him the other day his kids using Omni pod five now.

Mike 1:03:39
Yeah, doing really well on it here. Yeah,

Scott Benner 1:03:42
it's funny. This is the that I'm aware of I'm sure it's happened more than this. But then I'm aware of like a handful of times where somebody has been very involved in the looping community and really helping with it, you know, and then control IQ comes out one of the people's like, Hey, listen, I'm putting my kid on control IQ. And then that and then that's it. That person like kind of disappears out of the community. And then I mean, I just set John up to be on the show, I think. So to come on and talk about it. But But But what you just said is amazing, like switching between Otto Bolus and like basil instead, depending on the the blood sugar is kind of genius. Because like one of the problems we have. What in the hell excuse me, Mike, this is unconscionable. Why would that happen? Thing Nevitt I've owned this phone a long time and I don't know how to use it. One of the problems Arden's had you know it happens a handful of times a year as you can get into this situation where you're fighting a low and you got it and then it starts to come up but it's been one of those days where you've just been low, you know what I mean? Like you just don't need as much as usually need. You finally get the blood sugar to like kind of stabilize and it rises up a little bit and hits, I think Arden's thresholds are like 90 or 95 on loop. And then you get to 95. And it sees a rise, and that Bolus is in auto Bolus. And you're like, No, like, don't do that. Not now, not today, you like

Mike 1:05:16
it with with the patch two, there's another feature that helps out with that a lot called negative IO B factor. And you can go into the settings and tell it to only count like, whatever percentage of negative iob that you want. So like if you stop your basil, if your basil leaves two units an hour, and you stop it for a half hour, your iob is a little less than negative one, like at the end of that Temp Basal. Okay. But if you set the negative IB factor to 50%, your negative iob will only be negative point five. So then it won't try to give you as much insulin.

Scott Benner 1:05:51
Yeah. Well, I What I've learned to do in that scenario is just say like, like turn off micro boluses. Without carbs, until you find some stability, then we'll put it back on. And that

Mike 1:06:02
free APS has that setting. Yeah, which isn't in,

Scott Benner 1:06:05
right. Yeah, right and aren't using free abs. But the truth is, at this point, there's so many different versions, I don't even know what to do anymore. Like, wait, maybe there's a better version I could be using, I don't even know how to know that at this point. So you're using it on the pod or using it with what kind of pump.

Mike 1:06:24
I will I started out with a Medtronic because I had one in my drawer that I worked with. The nice thing about having met tronics for 20 years. But then I switched to Omnipod. More. So just because I was worried about the warranty situation. Like if this pump breaks, I don't have a replacement for it, I can't get it repaired really. So then I started using arrows, and I didn't really think I'd care much about the tubeless feature. But then like six months later, Thanksgiving came up. And it was like I kept hearing people talk about the tunneling, like for too big a boluses. And like, Alright, I'm gonna put my Medtronic back on. And those were the most annoying three days of like, my pump going everywhere and having to take it off, put it back on. Getting caught on things. Yeah. And like, I guess, like, well, when it happens for 18 years, you just kind of deal with it, you don't really notice it. But then having six months without that, and then going back to it, it was like, Oh, this actually is a huge improvement. I've tried dash and I like like, I would like to move to dash, but it's billed as pharmacy instead of DME. And my insurance, the way it works like it's way better for DME for me.

Scott Benner 1:07:34
I'm at the point now where I'd like to move out into loop with Dash. And

Mike 1:07:40
you can keep using free APS with dash right now. It's a different version of it. But it's still free P for APS, it should look almost exactly like what you're using now.

Scott Benner 1:07:52
Is it a stable bill? Yes. Yeah, I might have,

Mike 1:07:56
it's the exact same thing, just with Dash added. I think there's a couple other bugs that are fixed or something. But

Scott Benner 1:08:03
I don't want to send her back to school with a prop with something that she wouldn't know how to deal with. But at the same time, this is

Mike 1:08:12
I posted a Dr. We tutorial thing a while ago. Yeah. So like you can remotely install it on her phone to I've actually got even when she's in Georgia, like you can just remotely update it or

Scott Benner 1:08:25
Yeah, Mike, we're supposed to say Chicago, she goes to school in Chicago. That's what,

Mike 1:08:30
that's what I said. Right? Yeah.

Scott Benner 1:08:32
And interestingly enough, Kenny just sent me that same thing. And he any and he's like, you know, you can just do it remotely now. And I was like, really? Like, that's crazy. Yeah, that sounds good. So that's what I want to do. I just need to find the time to sit down. And I mean, I am assuming all I really do is just rebuild the app and then restart a pod with dashboards. And that's it. Yep, yeah, it does. What do you know about? So here's the thing. I put up a post the other day on Facebook. There's two things I want to talk to you about before I let you go. I put up this thing on Facebook. And I was like, tell me something you don't know. This is like the most popular thing I think I've ever posted online. It's just been seen by Oh, your Heroku thing? What? Yeah, yeah, because I don't understand it. I know I have a Heroku app or page. I know I pay for it. For the life of me. I don't know you do. Really? Yeah, they made me start paying for it. For the life of me. I don't really know what it does. I know it's, if I if I didn't have it, I wouldn't have Nightscout. I do like Nightscout. And so like, I don't know, like I don't understand. I've never done a thing I don't understand before as much as this.

Mike 1:09:50
So like Heroku is basically it's the website that hosts your Nightscout app. And then do you have another Yeah, MongoDB like on another website holds all the database. So Heroku or the Salesforce that people who own them, they decided they can't keep the free tier anymore. So then they had to, like now it cost $5 A month is the minimum you can do. So the easiest way is to just pay that $5 a month, and then you don't have to do anything different. Heroku just keeps working with your NetScout. or Now there's also as soon as like the Heroku started, like announced that they were going to start charging $5 A lot of people started to look at other websites that could host it instead of Heroku. So like I've moved mine over to Google Cloud now. So that'll that'll just be free. And then I also with Google clouds, nice because you don't have to go back and clean up the database. Because like, with Heroku, or with the Mongo DB, you're limited to half a gig, I think. So once you have like, you know, every six months or so you gotta go back in and clear the data. ON CLOUD one, I don't even know you really not do that.

Scott Benner 1:11:12
Yeah, I'm fascinated that you're saying that. I was like, Oh, is that a thing? I'm supposed to be doing that I'm not doing too. Even I don't

Mike 1:11:18
if underpinning if it's working, then I guess it doesn't? Doesn't matter. Yeah. But under penalty

Scott Benner 1:11:23
of death. I've seen the word like the word MongoDB. before. And I even feel like I know that if I tried to log into it. I have a way to save your password somewhere. Yeah, but I don't know what it is. And I, but but I don't know, I just listened to somebody. They told me like, do this. I did it. And it works. And it works amazingly. But I mean, that's the part of it. Like all of that is where this gets like sketchy. Like for people coming in trying to like, Oh, I'll try it. But then you're like what you just said, I know makes sense to you. But as you're talking my brains, like, I don't know, it sounds like there's an app. That's Nightscout. It has to be put somewhere. It has to exist somewhere. And then I think well, how come I can't just build it in the Apple Store, like in Xcode like I do with the app for the blue. Like, why is that not okay? And then

Mike 1:12:18
it's got to be, it can't run on your phone, it's got to run like somewhere in the cloud. And like it, if it's an app, it's got to someone, like, if someone put it in the app store, they'd have to pay for their own big giant server for everyone that runs Nightscout. Okay, so this way, like you're just building it yourself. That way someone doesn't have to hold everybody's like, there are some websites that, like, there's a couple. What did you call them like monitored? That's not the word. It's got it set to like, are just for web or just for Nightscout. Like, so you can set it up, and they take care of all the database work stuff behind it.

Scott Benner 1:13:00
I mean, you think, Well, if you switch to this, because people have come on people like go to rail, is it railway?

Mike 1:13:05
Yeah, railway is nice. It's probably the easiest one to switch to.

Scott Benner 1:13:10
And then I'm like, I don't know, like, what what if that company goes out of business? Or what is it like, you know, you like?

Mike 1:13:16
And then you got to switch to a different one or Yeah, that's also why I didn't go with real quick, because I'm not really sure what the future of it is where Google's not gonna go away. Like, I suppose they could get rid of the free tier. But if that happens, I'll figure something else out.

Scott Benner 1:13:29
Yeah. See? That's because you understand it gives you Well,

Mike 1:13:33
I know where to go online to find other people that understand,

Scott Benner 1:13:37
oh, well, that's probably better than understanding yourself. I, I just feel bad. When I ask people questions. I'm like, I don't know what to do. Can you help me? Like I feel badly about it? But I think you know, in the end, I do talk about it on here. So it does, it does get the word out. So I guess it's a fair trade. But I just I keep thinking about in the future. Like, you know, I mean, this aren't going to have a Mongo DB when she's 30. I bet she won't. So anyway, I like the way that it's progressing. So So you're telling me right now there's a version of free APS for dash that stable?

Mike 1:14:17
Yes. The problem is that free APS like it won't keep getting updated. Like it'll, right now it's at a point where, like, they'll keep like, when a new version of iOS or Xcode comes out. Maryann will go in and do like, she'll try to keep it updated so that it continues to work and stuff, but there won't be other features that like it won't improve at all from here on out. And if something happens with the new version of iOS that breaks it, like not going to spend a lot of time to fix it. I see. So really, I mean, it really I think most people including you should just just move over to the well, like like, by the time this comes out, loop three will should be out on Last year, hopefully,

Scott Benner 1:15:01
you think that's the way to go. Loop three.

Mike 1:15:05
Yeah, which is what loop Dev is.

Scott Benner 1:15:09
But right now, if you if you like, go to the if you go to any if you'd like Google loop three right now, don't do it later because like I said, this will be six months later. But it the way it reads on the, on the on the GitHub document, it's like it says right now, like this is being tested by experienced loopers right now. Yeah. So it's still in the in a beta phase.

Mike 1:15:33
Yeah, but I mean, I've been using it since March, I think, okay. And I haven't had an issue with it. But I also like, I keep tabs, like, I'm always in the loop group, and I'm part of the loop and learn group. And then I'll check the zulip Every once in a while, where it's like more than the actual developers hanging out there. So but then also like, like, it probably won't really matter, because it'll be six months in the future. But there is a version in loop docs called fixed Dev, I think, where it's where Marian like, froze loop dev at a certain point. So she's like this, look at this version right now, like is fairly stable. Like working well. So then, that's the version that you'll download just from that. It's like a build script works the same way that the master build script does. And you're so then you're like, Oh, I'm sorry, you won't keep getting the new update stuff like so when they keep putting new stuff in. And they're like, because if you just take the very newest version of loop dev every time, you don't know how much that's been tested, you don't really know if there's something that might break the app that gets added to it. But if you use the fixed Dev, then there's nothing added to it anymore. Like that's just where it stops for some time. They're unstable. Yeah. So and if something comes in, and like a bug comes out, and they're like, oh, this actually does affect the, that version too well, then they'll both go in and look at the options and update that script to download a version that that bug would have been fixed. And

Scott Benner 1:17:09
but even if that happens now with this new like, I forget what you call it earlier, what Kenny was telling me about but But if, yeah, if so if something happened to the app, and it just crashed, or it had a problem, it's now as easy as putting a link on like a cloud server, sending it to art and having her downloaded to her phone, click on it. And it just rebuilds the app right on our phone. Yep, that's insane. How come we haven't been doing that the whole time. Like, that seems amazing.

Mike 1:17:39
And the one caveat is like it has to be a phone that you've already plugged into Xcode and built loop to

Scott Benner 1:17:44
write you can't just install it fresh with that

Mike 1:17:47
with like, if if she threw her phone off the bridge, and like needed to get your new phone, you like there are ways to get around it to add that phone to your Apple account without actually plugging it into your computer. But it's a lot more clicking around online. And like kind of a roundabout way to find like the specific number of the phone to enter. So it is possible, but more difficult. It's

Scott Benner 1:18:12
interesting. So I'm gonna put you in charge for a second. Should should Artem be using loop Dev. The loop three.

Mike 1:18:22
Yeah, I think as long as I mean, as long as you're active in the diabetes, like online community for loop blooped. And like so if there there is a bug or something catastrophic that comes up like you would see it. Other than that, like I for you, I would say yeah, like, you know, look well enough, like, better than anyone else really. So like, if something's not working right on it, I feel like you would see it and realize, but like I said, since March, I haven't noticed anything really.

Scott Benner 1:18:54
So you haven't rebuilt the app in nine months?

Mike 1:18:58
Oh, no, I rebuild that a lot. But, um, the well, the version I'm using now, I think is from like, two months ago. Okay, that's when it stopped getting updated. For the fixed one.

Scott Benner 1:19:09
Yeah. And so you do you think it's getting close for them to say this is a like a stable version?

Mike 1:19:16
I hope so. But I'm sure it'll probably go to like a release candidate where like, they're like, this is the version we think passes all the tests, and then that'll sit there for a little bit. And then though, as long as they don't have any problems with it, then we'll move that to master.

Scott Benner 1:19:30
Yeah. Hey, can I can I move her to a version that supports dash and then four months from now remotely move her to loop three?

Mike 1:19:47
Yes, Inchon Yeah, you can do that. It'll be a little more difficult to move her back to free APS from three. But I think it's just basically you have to make sure everything's uninstalled on the phone.

Scott Benner 1:20:02
Just like to take the app off it completely.

Mike 1:20:05
Yeah, there might be another step or two that you have to go through. But that'll be in like loop docs, he could find that or message me and I'll figure it out.

Scott Benner 1:20:15
Interesting. So if so if I went through a version right now that was dash compatible, but wasn't loop three, which version would I be looking at?

Mike 1:20:27
If you don't want loop three, you still use the fix dev build script. But that script has free APS dev in it. Okay. And that's step B, which basically what you're using now free APS, except with Dash support added in,

Scott Benner 1:20:42
got it. And that one's pretty people seem pretty happy with that right now. As near as I can tell, from people talking online.

Mike 1:20:51
So yeah, well, I think like I said, we're like the people running loop docks and like, trying to push people more toward like, if you want to use dash, especially if you're an experienced user, or Looper to move towards the loop Dev, just because it's, it's what everyone will move to, to and hopefully, once it's released as master, it's interesting. Three, APS will eventually die out.

Scott Benner 1:21:18
I think that very few people listening to this understand what we're talking about.

Mike 1:21:25
That's a good chance. Because I also tried to, I tried free APS X. And like, February this year, and it's so like, it runs off the same as like the open APS or Android APS, like off that same base algorithm. But developed by Ivan, the same guy who created free aps that you're using. But it was still pretty early on in the development. So it was neat and interesting. But then as soon as the Russia stuff happening, he can't really update it since then. Right. So it's just been kind of sitting there stagnant. So like, once that, like, once the rest of the situation kind of figures itself out, or like once he can start pushing updates to it. I might try that one again.

Scott Benner 1:22:14
I feel like we should smuggle him out of the country and get them here. Seriously, every time I talk to somebody, I'm like, I don't know who Ivan is because someone hire him, please. What are we doing? Go get them all from a job for God's sakes. All right. Okay. Is there anything we haven't talked about that you want to because I have one last thing for you?

Mike 1:22:39
Oh, maybe I mentioned a new bus. Have you heard of that? A new bus, a new bus. So it's made by it's made by people in Australia. And it's a Dexcom transmitter that they've like, drilled into and modified the firmware on. So that sensors don't end. So like you can just keep it running. You don't have to restart it, really. And then it also puts the warmup time down to 15 minutes. And it comes with a battery that lasts. I think I got mine in like sometime early this year, and the battery is still going like I think the battery is supposed to last six months instead of three months. But then you can take the battery out put a new one in

Scott Benner 1:23:24
that I've seen people do I've seen them like dig into it, pull the battery out put another like put like hot glue over top of it to hold it in something like that. Is that the kind of thing you're talking about? Yeah, basically. Amazing.

Mike 1:23:38
Then you can just have one transmitter, and that'll just keep working. And then the restart thing is what's really helpful then, like I had a sensor on that lasted 30 days, and was still like within 10 points.

Scott Benner 1:23:50
It was just what I use. Sometimes it was just one

Mike 1:23:53
drawing like normally I get like 14 days and then it starts getting noisy. So then I pull it. I really wish g7 just lasted 14 days. Like I can't wait until they get to that point.

Scott Benner 1:24:04
I thought it was going to I thought that early on. That was the chair and

Mike 1:24:08
then I think there is something with like the adhesive like they had problems getting it staying on everybody for 14 days without making the adhesive too crazy. Yeah, but libre has been doing it for a while. So I don't know why.

Scott Benner 1:24:22
I imagine it comes eventually. So I don't know. Okay, my last thing for you. You left a review for the podcast. That was the it was the most like thoughtful and lovely and then cake made me cringe and it made me laugh and I just I very much appreciate it. Thank you. I've never read something that took me aback. It's only a paragraph and I'm started reading it. Now I got to Google. I don't know who this person is, like Google. I'm like, alright, that's who that is. And then you said something that I was like, Oh, I don't like don't don't Don't compare me to that. Like that made me feel really? Yeah, I don't know. It's just so funny. But I there was

Mike 1:25:06
a lot of parts of that. I was like, oh, I should take that. No, maybe I'll leave it in, like I almost rewrote, or like, deleted that and read it a couple times. So I'm glad I left it there.

Scott Benner 1:25:15
Yeah, no, I'm glad you did too, because I feel like most people who read it, we'll just pick I don't know what this means. Exactly. But I, I was, I was just very, it was heartwarming, and, and it made me feel weird at the same time, which is how I know I liked it. But I appreciate you. I appreciate the podcast being valuable for you in a way that made you think to write that. So

Mike 1:25:36
I think I've got 105 episodes left. And then I'm all caught up.

Scott Benner 1:25:40
I'm thinking of giving out an award for people who listened to all of them. Now, it'll be it'll be a digital real award. I will not be sending a trophy to your house. You know, the trophy might that you never won playing baseball.

Mike 1:25:54
Are you the trophy?

Scott Benner 1:25:56
Am I the trophy? I am nobody's trophy that's for sure. No one would get me and go. Oh, I feel very accomplished right now. No, I just, I mean, it occurs to me, especially as the as the podcast gets into the eight hundreds as far as and nine years. Like in a couple of weeks. I started that ninth year, but I saw this podcast the other day. So funny. It's been out for like three years. And they're like, we're in the season nine. And I thought to myself, No, you're not. Like, stop it. You can't make a season 10 episodes and then tell me you're that's a year, that's a month. That's two weeks for me. Like I think that episodes in a half a month. And they're like we're in season nine. I'm like you just started in 2000. And like 20, like, What are you talking about? But, but anyway,

Mike 1:26:45
I just we're going back through the podcasts and because of how, like you started off, I think like once a week and then moved it up and up and up. And now it's like four times a week. So like going back through the podcast, it's like the last half of it is like the last two years. Yeah, may not pass. But a good chunk of it is just like since COVID. And then like, as soon as I hit the point that was like, pre COVID. It was weird. Well, COVID

Scott Benner 1:27:08
changed it for me. Because Because I saw overwhelmingly if people heard this already, they can probably you could probably shut this off now. But overwhelmingly podcasters I thought made the wrong decision at COVID. They, they they were saying, well, people aren't going to be in their cars as much. So they're not going to listen as much. So they started making like less content. And I it just struck me the complete opposite way. I was like I'm gonna make more, because I think people are gonna have a lot of time. And that for you? Well, except for me, I'm the only one that didn't get the cruise through COVID. And, and by the way, was up all night on Friday getting you the Dexcom g7. So just listen to it. But that's not the point. The point is that and I also stopped thinking my I stopped thinking of myself as a podcast. I mean, it's a podcast, obviously. But you know, once a week, or some come out twice a month or something like that. I started thinking about who who is successful in the space of delivering audio to people. Like I looked at those people, those people don't put out an episode a week, they put out three or four a week. And when you listen to it, you might not always be interested, you might like log on on Tuesday and go I don't care about this interview. But I love the one on Monday, and I might like the one on Wednesday. And I looked at that and I thought that's the model for me. I'm going to put out a lot of good content, you're not going to care about all of it maybe and it's there if you want it. And that's just where I went when COVID switched and to your point a minute ago, this year 2022. The podcast is just by a hair's breadth gonna miss 5 million downloads in 2022. So is a big number for people who are not in podcasting this show I don't think I usually say this on the show. But I'm in the 96th percentile of all podcasts that exist. As far as I know all like not even just health. All not just in health actually today in health. I actually have this in front of me because I pulled up I was pulling up your review today in health. The podcast is 134 in health and fitness which is the parent category and that is that's high they only track the top 200 shows to begin with. Like your your charting if you're in the top 200 So I have I have a parent category health and fitness which I'm 134 in today and it pretty consistently stays in the top 200 all year long. But in its in its subcategory which is health and fitness medicine. I'm number 12 Today in and there's some Pretty big podcasts ahead of me, like, like stuff that has, you know, dozens of people working for them. And they are a part of a media company. And like I read down from the top, Peter Atea, who is just a huge help body has Mark Hyman, Rhonda Patrick. Paul Saladino. Like, you know, these are the people Peter McCollum, these Matt Walker, they're the only ones really out of me. And then it's me today. And I guarantee you that they don't make that podcast by themselves. So it's pretty cool. RFK is there too, but I'm not sure of what it is he's peddling. So I didn't. I haven't looked too deeply. I've heard people on two different sides of him. So I'm staying away from that one. But, but yeah, the podcast is popularity is measured by downloads and by new subscribers. So the one great thing about charting is, if you're not constantly getting new subscribers, you don't chart no interest. Yeah. And that's the big deal about being in the I think in the medicine category. I've I've been pretty consistently the top 20 for like the last three years. So anyway, I just want I put content out and if you want it, that's great. If you don't want God, I got it. Like you don't I mean, so you'll be like the one that I

Mike 1:31:23
just don't go look for a summary of it online. Yeah. Because what the, well, the crazy thing, too, is like, your transcripts are on the website. So if they really wanted to just read it, they could just skim it there.

Scott Benner 1:31:35
I also don't think that these people are like bad people who are like, please just tell them like, I just need to know this. Yeah, they don't know my and that's why I I thought, I thought in a joking way, like and and yet, like very like, I don't know, honestly, I was just trying to say like, please understand my side of this. If we all give away what's in the podcast, and nobody has to listen to the podcast, then there won't be a podcast. Like that's it unless you want me to start charging you for the show. And, you know, the truth is, if people did that, I'd make a lot more money, like a significant amount more, and I still don't think it's right to charge you for the show. So I don't do it that way. I guess.

Mike 1:32:17
You'd be making more money, maybe, but you'd be reaching less people.

Scott Benner 1:32:21
Exactly. And I don't want that. I don't want to limit who gets to hear it. Because you can say something. I mean, think about it. The 5 million downloads. What if I charged 10 cents an episode? Just 10 cents? I don't know the math on that because I'm not smart. Okay,

Mike 1:32:38
but I spent $80 This year then, right?

Scott Benner 1:32:42
You're one person. So if I take 5 million? That's a lot of zeros. Okay, so I take 5 million. you to help me on this because I might be wrong. That's 500000. Wait, is that wrong? Six years 50823456 5 million. And I say times point one. That'd be 10 cents, right? Yep. Ah, yes. I would have made $500,000 this year. I want you didn't know I don't make $500,000. So. So just every other year well now. So now think about that. That was 10 cents. What if I just made it 20 cents a download, I would have made a million dollars this year. And instead I take ads. And I let the advertisers pay for it. And you guys don't have to pay anything for it. So it because of what Mike just said like your smart person. Like Like, even if you charge 20 cents 20 cents for something, it will eventually eliminate some people. And then what happens if that's the person who doesn't know how to Bolus fat. And then they spent their entire life with a seven and a half a one C when it could have been a five and a half a one C if they only would have known to put in some more for French fries an hour later. I don't I don't want to. I don't want to think that I'm limiting people from getting good information. Just to make money. Although now that we did that with the calculator, I really would like to charge 20 cents for each episode. I've been thinking about it for a little while. And it's gonna make me a little sad inside but I'm gonna be okay. I'll be like, I'll get past it. But anyway, I just think it's I think it's a it's a it's an endeavor that I like being part of I like trying to help people in mass. And I I'm not telling you that one day maybe the advertisers will dry up one day and you'll hear me get on here and go look, the podcasts cost 20 cents an episode now. You don't like it don't listen, there's nothing I can do about it. But for now I'm I've been able to keep it for eight solid years 800 app episodes, I've been able to keep this podcast free for people. And, and still, my house is heated, you know. So that's my goal. Although I guess maybe I should take a swing at the end. Right, Mike? What do you think? Like the last year go completely dirty, just curse through the whole thing charge like 25 cents and

Mike 1:35:20
oh, I think if you just made a separate one that was unedited, not edited, but like uncensored. Yeah. And then just charge for that one. I think people might buy that you think I could

Scott Benner 1:35:30
do that just curse like, what am I going to record? Jesus holiday time, I might have to get an editor. Let's make enough money that that can happen. Although I also need to, like, I have these people, these wonderful people who help for free with the Facebook page. And that's important too. I need I need more money all the advertisers have to pay twice as much. I gotta I have to start paying moderators online. That's it. I'll call them right now. Let them know the price is doubling. You think they'll be okay with that?

Mike 1:36:01
I think there'll be okay with whatever you tell them.

Scott Benner 1:36:02
I don't think they will. I think they told me to go to

a huge thanks to Mike. Hey, a huge thanks to Mike for being on the show today. And for all he does for people living with type one diabetes. I also want to thank cozy Earth and remind you to use the offer code juicebox at checkout to save 35% off your entire order. And of course touched by type one.org. Go check out the event. Find out the details. And while you're at it, why not find them on Instagram and Facebook and give them a follow. At the end of the music. I have a little note for you for Mike to add on to what he said here. I will read it in just a second. Thanks so much for listening. If you're enjoying the show, please share it with someone else. And give it a follow or subscribe in your favorite audio app.

If you're looking for community around diabetes, look no farther than the Juicebox Podcast on Facebook, a private group with 40,000 members. There's a conversation happening right now that you want to know about Juicebox Podcast type one diabetes on Facebook. I don't care if you have type one or type two. Lada doesn't matter to me. I don't care if you eat keto, if you eat a bunch of hotdogs or potato chips doesn't matter to me how I eat doesn't matter to me, but you do matters to me that you know how to use insulin and you feel supported Juicebox Podcast type one diabetes on Facebook. Mike sent me a note the other day that said Hey Scott, I mentioned I might switch back to free APS X when I was recording your episode. So could you please update people that I did switch back, except now it's called AI APs. Anyway, about a month ago, he switched back and he's loving it. He said I opened the app far less than I used to with loop. And now that I switched to loom Jove, which is a faster acting insulin. I'm sitting 98% of the time in my target range of 70 to 180. Prior to that, he was sitting at 90% Since he switched to Dexcom and loop to two years ago for two years. He was Dexcom and loop two. Now he's using something called I APs and see him better time and range. And Mike just wanted to let you know. Alright, everybody. This was a good day. I'm feeling good. I'm gonna go check out my movie. I am seriously gonna go put on my joggers. And I'll let you know how the movie was later. Even though I didn't tell you what movie it is. You guys can wonder what movie I went to say. Hey, go follow that Facebook Group. Subscribe and follow the podcast in an audio app. Share the show with somebody else and except my thank you for doing all of that. I'll see you very soon. When I'm back again with another episode of The Juicebox Podcast