#947 Serious Inquiries Only

July 6, 2023Scott Benner

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.