#1663 Male Infertility and T1D Fire

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Firefighter Kyle Kondoff opens up about male infertility in type 1 diabetes—retrograde ejaculation, IVF ups/downs, stigma, marriage strain—and his T1D Fire nonprofit rescuing diabetics in crises. 

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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 back to another episode of The Juicebox podcast.

Kyle Kondoff 0:14
My name is Kyle kondoff. I wanted to talk about male infertility and type one diabetes because I looked up stuff and I could not find anything. It was very frustrating. And so I wanted to tell my story, because I've had to go through an infertility journey, and now IVF journey and everything with my wife that has been very difficult, a long road for us, but it's not very well known that male infertility is a common complication for male type one diabetics.

Scott Benner 0:46
If this is your first time listening to the Juicebox podcast and you'd like to hear more, download Apple podcasts or Spotify, really, any audio app at all, look for the Juicebox podcast and follow or subscribe. We put out new content every day that you'll enjoy. Want to learn more about your diabetes management. Go to Juicebox podcast.com up in the menu and look for bold Beginnings The Diabetes Pro Tip series and much more. This podcast is full of collections and series of information that will help you to live better with insulin. Nothing you hear on the Juicebox podcast should be considered advice medical or otherwise, always consult a physician before making any changes to your healthcare plan. This episode of The Juicebox podcast is sponsored by the contour next gen blood glucose meter. Learn more and get started today at contour next.com/juicebox this episode of The Juicebox podcast is sponsored by Medtronic diabetes and their mini med 780 G system designed to help ease the burden of diabetes management. Imagine fewer worries about missed boluses or miscalculated carbs thanks to meal detection technology and automatic correction doses. Learn more and get started today at Medtronic diabetes.com/juicebox,

Kyle Kondoff 2:06
my name is Kyle Condor.

Scott Benner 2:10
Kyle, you've been on the show before. Is that correct?

Kyle Kondoff 2:12
Yes, that's correct. I believe it

Scott Benner 2:14
was episode 541, wow. That seems like it might have been a while ago. It's over

Kyle Kondoff 2:19
1000 episodes ago. Of course, depends on whenever this one comes out. But yeah,

Scott Benner 2:23
yeah, I also, I don't know what that even means anymore, to be perfectly honest with you, do you remember what it was called?

Kyle Kondoff 2:28
I it was a T and D and firefighting. We talked about my firefighting career.

Scott Benner 2:33
So yeah, see if I can find it right now. 546, people, yes, if people would like to go check it out. So

Kyle Kondoff 2:40
that was, I think that was covid time too. So that was quite a ways back. Posted.

Scott Benner 2:45
It POSTED ON SEPTEMBER 21 2001 Okay, yeah, it was a while ago. 2021 yes, what'd I say? 2001 no, that wasn't done. You know, I just had, I just was driving, I was out, and I passed this sports memorabilia store, and it said, We buy and sell cards, and I have this one, possibly, like, really valuable football card. And I got it when I was a kid. I had a job in a in a baseball card shop. I was maybe 13. So this is over 40 years ago, and one day, a bunch of cards came in, and we used to get like, first shots at them, and I grabbed a bunch of them up and bought them in that collection of like cards that I grabbed, somehow is Walter Payton's rookie card. Wow. And it's in really good condition. If you trust the internet, it's worth somewhere between 3000 and, like, you know, a bazillion dollars? Yeah, I'm sure I don't have the bazillion dollar one, but I thought about, like, I've had that card for 40 years, like, 40 years, and, yeah, it just sits on my desk. And should I sell it? Like, if it is worth $3,000 like, I'll take that, you know what I mean, and or is it just this thing that doesn't have any value to me, because it's just a thing that's a story connected to a time when I worked at a baseball card shop and, like, what should I do with it? But anyway, I was going through that, and then I got lost in the idea that, Oh, my God, I've owned a piece of cardboard for 4040, years. Anyway, so 2001 when you said that, you know, oh, you just said 2001 I thought, How long ago was that? And then it hit me, that's 24 years ago. That's not even, yeah, yeah, you know, like, Oh, gosh. Anyway, you just freaked me out with time I'm wasting

Kyle Kondoff 4:36
no, no, I'll freak you out even more. We responded to a school a few weeks ago for a medical call, and we responded to the teacher, who was 23 years old, and whenever I thought of her birth date, I was like, she wasn't even born for 911

Scott Benner 4:52
that's insane. It's all nuts. It really is.

Kyle Kondoff 4:56
Yeah, it just shows world. You know, it is what it is

Scott Benner 4:59
thoughts that. Older people get to have but nevertheless, so when you first made this appointment, yes, what was your intention to come on and

Kyle Kondoff 5:08
talk about? I wanted to talk about male infertility and type one diabetes, because I looked up stuff and I could not find anything. It was very frustrating. And so I wanted to tell my story, because I've had to go through an infertility journey, and now IVF journey and everything with my wife that that has been very difficult, a long road for us. And so once I started doing that research, I found some research about it, but it's not very well known that male infertility is a common complication for male type one diabetics.

Scott Benner 5:46
Okay, so we're going to dig through that, but at some point you're going to hear us. I don't know if we're going to pivot, or if we're maybe we'll weave it into the conversation, but you've started a what? Tell everybody,

Kyle Kondoff 5:57
I started a nonprofit, and I will say I started, but it's, it's a group of us. My wife is a co founder with me, and it's called T, 1d, fire, and our mission is rescuing diabetics in their time of need. Basically, I've had it paid forward to me, and I'll tell that story. We've done it for going on seven years now. We've had the opportunity to help people nationally, as well as locally here in the Texas area, but this is we're recording in August. So it's just over a month since the bad floods that we had, and we've had quite a few people help out with that, and we were able to rescue a whole bunch of diabetics in need in the flood areas.

Scott Benner 6:38
That's crazy awesome. All right. Well, we're going to go through all of it. So, yeah, I guess a little bit of background. How old are you? How long you've been married and how long you've been trying to make a baby?

Kyle Kondoff 6:47
Yeah, for sure. I'm 37 years old. I have been married nine years. We're working on year number 10, next year in May. We have been trying for nine years. We got married in May, and it was Father's Day 2016 the month later, whenever my wife told me that she was ready to start trying for a baby. And so we've been trying for over nine years now, and it's been a very difficult journey through that time. We found out a lot of things. We've also seen the stigmas of everything, we've also figured out that everything that people say is not true, but people have a very different opinion as far as marriage and having a kid and everything else. And if you can't, then I'll tell everybody listening right now, there's not a problem with you. Unfortunately, for whatever reason, we have one in eight couples are going through infertility. We have more female infertility than male infertility talked about right now because it's an embarrassment for males. And I've actually had other people reach out to me through messenger. Not all my posts that have said, Hey man, thank you for posting about this. I'm going through this exact same thing, and then, you know, try to help them out, whatever, but have to keep everything private because they don't want their information out there. Absolutely fine, right? Not a problem. But we have to normalize the taboo topics conversation, of course.

Scott Benner 8:15
Yeah, how long were you and your wife trying before you looked at each other and said, Hey, this might be more than bad luck that this isn't happening.

Kyle Kondoff 8:23
So what they tell you is, you have to try for at least a year. So after at least nine months, I want to say we talked to the doctor, and they were like, Oh, well, you need to try for a year. You know, really, really try, basically, is how they said it. And we got married in 2016 we met back in 2012 we've had a long distance relationship most of our life together, because I was on an oil rig doing rescues and stuff like that while we were dating and engaged. And then after that, I worked at a hospital. And then I've been firefighter, so I'm gone for every two days I do it, 4896 so I'm gone for two days and then off for four days. But with all of my part time jobs and everything else, I'm not harmed much. Yeah, and so, so it's, it's a planning process. I will say in in the beginning, is it fun? Sure, after a while, it becomes a task. And I hate to say that, but it really does, you know, it's, do we really want to do this type thing?

Scott Benner 9:26
Yeah, let's do the thing and see if the band, then the baby, and then there's no pregnancy. And I would imagine that it starts to sour the experience even more that way.

Kyle Kondoff 9:35
Yes, absolutely. And so, so we, we talked to our doctors for a while, but I went and got tested. And whenever I went and got tested, they just do simple blood tests and stuff. And then after that, they said, Okay, well, here's some pills. Take these. Hopefully these will help whatever, not thinking either not thinking about the type one or just. Not paying attention to it in general, and not telling me that that's a common symptom. So next time I went to a new urologist, and this is December 2022, I went to a urologist, and they did some testing, and what they said was, what happens is you actually have your urethra closed off during intercourse, and so the semen doesn't come through the urethra, it goes back into your bladder. And I was like, well, that's honestly very weird. And so the

Scott Benner 10:35
most disturbing thing I've heard today, so

Kyle Kondoff 10:39
not to get into anybody's kinks or anything like that. That's, that's something of like, okay, well, now,

Scott Benner 10:45
is it possible there's a baby in my bladder? We just don't know it's in there. Yeah, Geez, how about that?

Kyle Kondoff 10:51
It's in it's in my urine, you know? So, so what I did was they gave me a cup, and they said, go home. And it's not the cup that you think go home, or actually, I'm sorry they told me to go home first go home. I have to do the deed by myself, and whenever I come back, then I'm going to urinate. I cannot urinate until I got back to the office. Now mind you, this office was at least 25 miles away from my house. I wasn't going to go on the side of the road or anything like that. Oh my god. I went all the way home, but it's like, okay, well, I have to pee, so I gotta hurry up and go in there. But I peed, and I came back in to the doctor, came back into the office. He goes, Oh yeah. His exact words was, oh yeah, you've got swimmers all in that urine hitting isn't that awesome. So yeah, that's, that's something that I absolutely never knew, and so once I found that out, then again, I didn't try to be this spokesperson, but I started talking about it. Okay?

Scott Benner 11:50
So I just have to ask one question, just tech contextually when, oh God, when you finish, something comes out. No, no, you don't. So were you want to all right? Were you unaware of

Kyle Kondoff 12:02
that? So it's not the fact. And let me hold on. I'll skirt back. I'm not going to say no, very little comes out, I think. And so, so that's the problem, is the fact that there's not a lot of volume. And that's what we found out through this whole IVF. And we also did IUI before IVF, which is intrauterine insemination, we'll get into all those so

Scott Benner 12:24
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Kyle Kondoff 14:50
Was I tracking it? No. Did it lessen over time? Yes, not realizing, right? Obviously, however, everything's happening and stuff so but. Again, it's also hard to tell whenever intercourse does happen exactly how

Scott Benner 15:03
much is you're not putting it somewhere where you can see it

Kyle Kondoff 15:07
correct Exactly. So, so it's difficult for me to tell all of that, but whenever they said that, it's like, okay, cool. So what do we do now? What you know? Well, you can take Sudafed, and Sudafed will help open up your urethra, so some sperm will actually get out of the urethra during the intercourse, and y'all can try that. So what they say is for us to try for a year before we go see the doctor, right. Okay, so now we've seen the doctor, go see her doctor, and her doctor says, Let's try for a year, and then I go see the other urologist. And finally, the urologist is like, Y'all might want to go talk to a fertility specialist. Okay, so this happened December 22 where I got the testing done for the urologist. January 2023 we had the first fertility consult, and they said, and this is where we did some research, but we didn't understand everything. This is how much everything is. This is what you can do. This is everything going on. Now, mind you, I was doing two full time jobs, so I was actually pulling two days on one day off, two days on one day off for a six day period, and then my wife was working on her Master's. And so we said, Okay, well, let's start this and see what happens. So we did our first IUI intrauterine insemination, which is where now, here's the more uncomfortable part. You get the mail. He goes into a room at the clinic. I just want to say this ahead of time, this room is not soundproof. You can still hear people walking outside the office, just very awkward, and you have to do the deed into a cup, and they will take that and then they will insert it into the vagina of the female that day, because they don't want any quality to go down or anything like that. So that happened in March, we got a negative pregnancy test. We were able to try again in April, we got a negative pregnancy test, and then we did it again in July. I don't remember why we didn't do it in May. It may not have worked out for the cycle or whatever, but after three unsuccessful IU eyes, they talked to us and said, Okay, so your next steps could be IVF. Okay, well, what does IVF entail, mind you, each and I don't remember the exact amount. I want to say 1750 but each IUI was $1,750 it might have been pretty close to that. Whatever it was, it wasn't over 2000 okay? And there's not really any extra medications, not really any extra things that you have to do, whatever IVF you're talking 15,000 to 30,000 depending on which clinic you go to. And so ours, because we did, don't ask me what PGT a means, but we did PGT a testing. It was an extra $5,000 but they test for 520 different diseases and cystic fibrosis and all that kind of stuff, muscular dystrophy, they do not test for type one diabetes. They cannot test for that ahead of time, unfortunately, but they'll test the embryos for that. So we paid the extra 5000 to get that done on our first egg retrieval, but our first IVF consult wasn't until June of 2024 because my wife graduated in May of 2024, we wanted to wait, because it's going to be a lot of stress for her. Now, the genetic testing was completed in July for us, because we had to find out. And again, it's not scary if you know exactly what's going on, but you have to figure out how everything is. We had to get tested for AIDS, for HIV, for all those kinds of things. They want to make sure we're all clear for that stuff. Even though we're married, still have tests for all that as well as they're testing for other things. Yeah. So, so we do the medication. She starts, excuse me, let me correct, because I don't want to be corrected. She starts the medications for the egg retrieval coming up the next month. That's July of 24 I am going to have the easiest part. I'm going to do the same thing I did for IUI three times, and I go into this room and give my sample. The difference being this time, they're going to take the sample, they're going to test it, they're going to do all this kinds of stuff, and then they're not going to use it right away. They can actually freeze it and do different things. So August 14, 2024, so just over a year ago, we had the first ever retrieval, and that is $20,000

so we're already looking pretty close to $26,000

this time we did the three PGA tested embryos came out. But what happened first was she had 16 follicles. 12 were retrieved, nine matured during that process. Mind you, this is a three. Four week process, we had four blastocysts, and then once they tested them, three, PGT, a normal meaning that they have one that's just sitting there extra. The other thing that they do is they grade these things, A's or B's, stuff like that. Okay, and I don't know exactly what they were, but through this, PGT, A, we also know the gender. So, oh, you get to pick, yeah, exactly so. So instead of me knowing the gender, because this is going in her body, she wanted to, we wanted to have some sort of a surprise, I would be the one that didn't know. So she got to pick which gender went

Scott Benner 20:35
in. I just want to say I saw, I saw that coming, cop, but, okay, go ahead.

Kyle Kondoff 20:39
So, so we had three, three good ones after all that, right? 16. And that's typical of what happens. You get about 1/3 1/4 amount. So 16 follicles. And so we had the first one. So the first attempt at an embryo transfer took place September 19, again, coming up on a year from that. But she took estrogen to suppress the ovulation, and and the ovulation still occurred. This happens point 3% of the time. This, this was a point 3% chance. And so because of that, because she ovulated through it, the cycle was canceled. So we go to the doctor. At that point, we see the nurse, and she starts talking to her and everything, and she talks about how she ovulated through the medication, and she goes, Well, I mean, it's your your hormones and everything. They're so off and stuff, and that's why you're infertile. And we both kind of look at her, and she looks and she's like, not me, him. And she's like, Oh, well, you're infertile too, then. So we find out, Oh, we're dealing with double infertility.

Scott Benner 21:44
Awesome. That was right. That wasn't just somebody guessing out loud, no, no.

Kyle Kondoff 21:50
She's because of the hormonal changes and everything that she's going through because her, I won't say her cycle is not normal, but all of her hormones during her cycle is not normal.

Scott Benner 21:59
Yeah, let me stop you for a half a second here, because I want to tell you, this is obviously not me saying this, but the internet disagrees with you that the restricted uretha urethra has anything to do with type one diabetes. Yes. So explain that part to me like because what it's saying here is that you could have had an injury. There could be a structural defect, something like that, is that not the case? No, no, it's

Kyle Kondoff 22:24
not the case for me, unless you want to talk about, you know, the time, whenever I was a kid, like every male, we got either kicked into balls or

Scott Benner 22:33
had a ball. Kyle, let me give it to you here. It says trauma or injury, like a pelvic fracture, catheterization that might have gone wrong, endoscopic procedures, an infection, like an untreated sexually transmitted infection, like gonorrhea in the past, inflammation, sometimes related to conditions, like other conditions surgical history, like prostate surgery, radiation, that kind of thing you would have seen symptoms of weak urine stream, straining to pee, spraying stream, incomplete batter and bladder emptying, or more frequent UTIs. None of that happened to you prior.

Kyle Kondoff 23:06
No. Nothing happened and and I got it from all the medical professionals that said, Oh yeah, no, this is a thing for diabetics, and that's why I said, Because looking up that information online just shows how much, again, our healthcare system is failing us, and the lack of education of these complications, just the list of complications, keeps on growing for diabetes in general, not just type one. Yeah, so again, that's, that's why I said, you know, it's, it's frustrating because I put that out there, and other type one diabetic males are like, are actually some females told me that their male is having it. And I said, go get tested. You know, figure this out ahead of time, because I even had somebody. I went to a fire conference and a few type one diabetic first responders. One of the females came up to me, and she's like, so what you posted about the other day, like, I'm kind of worried about my guy. And I said, if you're worried, and if you talk to him about it, go get tested. It's not much to go get tested. In fact, it's preventative more than anything. So insurance might even cover it. Who knows? But no, I will say, I live in the great state of Texas. Unfortunately, they don't cover anything with IVF or infertility or anything like that insurance wise. So everything's out of pocket for us, but it depends on your state. Depends on your insurance, all the good stuff, but, but you can get tested. You can figure it out ahead of time to see how much that complication is affecting you. Because if you're 2223 years old, and you start trying to have a kid, then it gets frustrating later on. Like I said, I'm 37 we're almost to your number 10. Doing that well, just past year number nine. But can

Scott Benner 24:45
I take a little detour there and tell me, yeah, a little bit about the like, what are the implications of I get married? You know, we want to have a baby. We can't. Like, at what point does it stop just being like, Oh, this is frustrating. And then it goes to, maybe it's a medical thing, and then it doesn't happen again. Like, at what point do you do you think that your your mind tells you, like, I still want to have a baby. I can't seem to do it with this person. Like, maybe this part is, like, you know what I mean? Like, does it cause marital issues?

Kyle Kondoff 25:15
It does. It absolutely does. Throughout this time, we've had big marital issues, not to the point where, you know, we're, we're gonna split up or anything like that, but it's caused financial burden. It's called mental burden, and it's caused the physical burden, yeah, not just for my diabetes and the way I'm eating and everything, but her stress levels and sure, everything as well. You know, there's, there's extra weight gain, and I'm not even into the extra hormones and stuff that she has to take. Like, I said, the male has the easiest part, takes 30 seconds,

Scott Benner 25:46
but, but we have Kyle, I was gonna say, not to mention, too, like, kind of ruining, like, what sex is, yes, you know, like, which is a thing that you're hoping to keep going as long as possible, so that you because that helps keep your connection together, too,

Kyle Kondoff 26:00
right? Yeah, and, and, I think one of the earliest depictions that I can remember, at least being on TV, is friends, right? Whenever Monica pulls Chandler and was like, I'm ovulating, and they need to go do it right away. I think the same thing happened on How I Met Your Mother, Lily pulled Marshall aside and said that like she was ovulating while she was teaching a class or something like that. It doesn't happen like that. TV makes it sound like they have a 30 minute window. Yeah,

Scott Benner 26:25
this is fun. Yeah, there's, there's a two

Kyle Kondoff 26:29
to three day window in there. You know, just like more depictions have come out on TV and shows and stuff about type one diabetes, I think more will talk about infertility and things like that. But again, it's a taboo topic that nobody's speaking about. So it's it to me, it's it's just it was important to tell the story, to say, Hey, this is what happened, but also to know that there's other options out there. And I've said this publicly, my wife has said this publicly too, but she works for the state, okay, of Texas, and she investigates foster facilities program manager and does things, and has done things for a long time with foster care facilities, as well as watching foster kids and stuff like that. And because of her background, and because I'm not the last cond off, but I'm the last condo for my grandfather, I would like to have a biological child. We do not want to adopt. We do not want to foster. So many people have pushed that out to us, and believe me, we understand all the avenues of everything. We don't, yeah, exactly. We don't put anybody down on anything that they choose. This is our choice, though, and so that's the that's the hard part too. Is like, every single time you try to inform somebody about that, it's like they always come out and say, well, there's always adoption, there's always

Scott Benner 27:47
popular. There's so many babies out there in need. You said I got, I got a mom and a dad right here in need too, right? Yeah, we have like, desires for our life as well. Yeah, I hear that.

Kyle Kondoff 27:56
And at a certain point I'll be honest, I've already had this conversation with my wife, and I hope by the time this comes out, we would be pregnant, but, but who knows? We have had the conversation that it's getting time of when do we stop? When does it become too much? Because it's a physical as well as a mental and definitely a financial burden for us to keep on doing this, but we're we're still trying, and we're also blessed to where we're able to try. We don't go into debt like this. But I do know people that have tried 1011, times, oh God, for IVF, and you're talking 200 grand, and they still don't get a kid, one of my friends, who is a type one. She, I don't know exactly how many times they tried, but it was after 10 to 14 year period in there where they were trying to have a kid. And she finally has a baby boy. I say a baby boy. I think he's in middle school now. Who knows, but, but he's been around for a while. Well,

Scott Benner 28:59
there's also a time factor. You can't like, you don't want to be 70 raising your 10 year old either, right? Like, yeah, exactly. And at some point you got to feel like, what? Like you're going to get on with your life and find other avenues to put your passion into, yeah, instead of just being disappointed all the time. You said a couple of times about, forget how you put it exactly right. But the stigma around it all. Did you feel that? Like, was there a moment where you thought, like, I can't believe I can't get my wife pregnant? Did that hit you that way? Are you a little

Kyle Kondoff 29:27
Absolutely, did it really? Yeah, never once did, until we went to the doctor. Never once did we know who was the problem. In my mind all the time, what if I'm the problem? I'm my gosh, what if she's the problem, you know, whoever it is, like, we're gonna feel bad, of course. And

Scott Benner 29:44
so what's the end of that? What if, like, what if it's me? Then that means, like, what did you think it meant that it, if it was coming from your, you know, from your genetics,

Kyle Kondoff 29:54
it's my fault. I'm the reason why we can't get pregnant. She can't do it. And. Yes, I'll be honest, I never thought it was diabetes, not until the the doctor said, so. So it was, to me, your failure, right? Because, I mean, again, in the in the Bible and everything else but man for so long, man and woman for so long, has made a family. That's not the reason why we were put here on Earth, just to procreate, but it's one of the things that we can do.

Scott Benner 30:21
Feels like a main thing that you you wanted to do, and maybe even felt compelled to do, and now she wants that as well. And even though, like I would imagine, academically, she wouldn't blame you. But the concern is, is that one of you is going to blame the other one if the quote, unquote fault lies on their side.

Kyle Kondoff 30:40
Yeah, yeah. And I mean, we were good enough that we didn't have that issue. I'll tell you this just on a personal level as or actually a professional level, excuse me, as a first responder, it was more difficult to go on calls, having to deal with kids, having to deal with pregnancies, having to deal with pregnant women, also having to deal with troubled kids or calls that were difficult. Me and my crew, we went through nine pediatric deaths in seven months, and so that was very tough whenever that happened, because we're trying, and there was a lot of different reasons. We had a co sleeping mom, and I don't blame the mom, but at the same time, it's like, oh my gosh, this baby now doesn't have a life because this mom fell asleep on this kid, and here we are trying to have a kid, and honestly thinking it's not fair, you know, and that's that's wrong for me to think that. But

Scott Benner 31:38
still, yeah, I was gonna ask you, though, did the anger ever take over and you start seeing people in the world, you're like, oh, great, this crackhead can have a baby, but I can't, you

Kyle Kondoff 31:45
know, sometimes, yes, yeah, sometimes yes. Like, like, how can you have seven kids? And also not care about your kids in a way, because of everything that, you know, we saw, and not only me as a first responder, but she had to deal with it through work

Scott Benner 32:02
and everything else. Yeah, her job almost seems like it's torturous. There's there.

Kyle Kondoff 32:07
It takes a special person to do that. I will say that she's, she's had some crazy, crazy calls throughout the years. We've actually responded to a couple of the calls they were in some of our areas before.

Scott Benner 32:17
I didn't even just mean, like, the the horror of humanity. I meant like, while you, while you're sitting there thinking, like, I'd like to have a baby. And, yeah, right. And here's the world doing this, absolutely, it's upsetting. Well, I mean, did you try that one time where the the ovulation happened anyway? Did they waste the egg? Or do you still have that one?

Kyle Kondoff 32:37
So no, the cycle, it was just canceled, and so the egg wasn't okay. We still have it implanted, because we did still have it at the time, right again, that was coming up on a year, September 19. What's happened since then? Then the second attempt after that cycle was canceled, and everything we did another temp at embryo transfer that happened on October 4 last year. She took birth control to suppress follicle growth. Follicle still grew, and the cycle was canceled. So now we're two months in, and it's like, Okay, God or the universe or whatever you believe in, what is happening? Very frustrating, because now this is two attempts. Now, I will say, because the cycle's canceled, this doesn't count towards the cost. So that is always my frustration is like we're doing this and now we're not getting our money's worth. So

Scott Benner 33:31
also it's just, it's, I would imagine that the build up and the the anxiety and everything else that happens, you know, whether or not the cycle completes, and you actually try the implantation or not like all that still happens, right?

Kyle Kondoff 33:42
Yeah, absolutely, absolutely. And my body's not going through the changes that hers is. Sure I'm still going through the stress and stuff like that, but she is taking the medications. And I joked with her, and she really doesn't like this joke, and I can understand, but I told her, she knows what it feels like to be diabetic, because she had to give shots in her butt. She had to give take different medications. She had to do something every single day, and that's like almost a whole cycle. So it's, it's a lot of different things that she had to do, but different things help the follicle growth and and everything else. But October 4, we did that. We, I guess, took a break for November, just because the timeline doesn't show it. So December 2, we had our third attempt yet at an embryo transfer, and the first embryo was successfully transferred on December 6. So we stood around and waited, and I think we went on a vacation during this time and came back from vacation, and then finally they said, Dennis, you're pregnant. We have the positive test. They do it by the HCG number. She got a blood test to confirm that her hCG level was at 34 so three days later, because they want to test her so often. Second positive pregnancy test, HCG was six. Four. So it doubled. That's awesome. So we go on the weekend. Now, mind you, I'm saying December 20. So So what's right around the corner Christmas? So December 23 two days before Christmas, she got a phone call. Third pregnancy test showed an HCG lowered to 34 so what happened was, it's called a biochemical pregnancy, but it was essentially a miscarriage, okay? And so we experienced a miscarriage that was very difficult. That was also very difficult because we found out about it two days before Christmas. We were able to tell the family, close family and friends at that time, but we didn't let social media know until March, because, again, I've been very open and everything, but I'm also in this with my wife, and so whatever she says goes, Yeah, right. And she finally was able to tell me in March that she was good to go. So what they wanted to do was they wanted to do a mock cycle at the beginning of this year to try to figure out everything going on, she's going to get an endometrial biopsy, and they check for endometriosis as well as endometritis, how receptive the uterine lining is to implantation, to make sure that everything is good. So luckily, the endometriosis and endometritis was negative, so we didn't have a problem there. And the progesterone that she was taking, we had a positive response to that, as well as the uterine lining. So so everything looks like it's okay for the embryo to go in, for everything to be good, whatever. So she decided she's ready again. We start the second transfer cycle in March of this year, the second embryo transfer, and it didn't take at all. So April 8, which again two days before Christmas. Now, April 8 is two days before her birthday. She finds out that it's negative and it didn't take. So it's like the two days before something is just not good. Kyle's

Scott Benner 37:02
like, I look at a calendar and if it's 48 hours out, I just sit in my bed and I don't move. Yeah, are you trying the good old fashioned way too, in between all these times? Yes, yeah, yes. Okay,

Kyle Kondoff 37:13
still difficult with my schedule and everything else, but it's still not progressing in the way that we want to, of course, by

Scott Benner 37:21
difficult, you mean that you can't do it as frequently as you would like to in that scenario. Absolutely. Yeah, okay,

Kyle Kondoff 37:27
I again, I have one full time job where I'm two days on, four days off, but I really have three part time jobs, plus consulting for something else, and then I'm a ambassador for ever since, for my CGM. So I do do a lot of different things, not to mention, I run a nonprofit, right? So yeah, so I've been, I've been very busy doing a lot of things, but still this has been foremost on our mind for coming up on a year and a half. And so like I said, it's been, it's been frustrating because it's been over nine years having to deal with this, trying to figure everything out, and we still hope to get pregnant in the future, but this next step, because that was the second embryo transfer, what they said was, we don't want to use this last egg right now. We want to because apparently those two first ones were a eggs, or maybe a B positive, I don't know, a B plus, I think, a bit like school, and this one is a b minus or C. This isn't as good. And so instead of using a bad one, we're going to do another egg retrieval. So we're about to go to a consult. Because of that, we have to do the blood tests again. They have to test you every 12 months to see if you have the STDs. Have anything else, genetic testing, stuff like that. And so we'll get all that done, and then I'll give sample again, and we'll see how all that goes. Okay, going back to the male infertility, part of it, the Sudafed helps open up the urethra in that way again, according to the doctor, that more semen comes out. And the other thing that helps with that is time they say don't masturbate or don't have intercourse, whatever, for 48 hours before you come in here and do it. The nice part is now I've gotten to the point where I can take the cup home, go do it, not in that room with with everything else, because it's awkward. And at the same time, you also think, this is a fertility clinic. How many guys have been here?

Scott Benner 39:22
It's awkward, and I'm worried. This isn't this room's not clean, is what I'm worried about. Yeah, I'm sure they give it a nice wipe down. Don't worry. I'm sure they do,

Kyle Kondoff 39:32
I mean, but it's something that's not talked about, and it's something that's not thought of in the realm of man. It's a lot diabetes and male infertility and all that stuff. So still hope we do get pregnant and stuff, but it's led to, you know, a lot of different things, one of those being education and stuff like that, to try to help people, because it's been frustrating for us to have to go through it. But I don't want to see anybody else have. Have to go through, if you and your wife

Scott Benner 40:01
ever sat down, like, in a, in a, I don't know, like a light hearted moment, and said, Can you imagine if we eventually get pregnant, the kid comes out, and it's like a real shit, you know what? I mean, imagine Kyle if, like, after all this, like, one day you look at the kid and go, like, uh, kids a lot, you know? How are you gonna stop yourself from going, let me tell you the story of how hard it was to get you here and now, this is what I get now. I'm sure everybody's everyone's children are lovely, don't worry. But have you ever talked about stuff like that, like the more abstract stuff?

Kyle Kondoff 40:33
Oh, we absolutely have, and other other things as well. Something that happened within the last month is my sister in law and niece moved in with us, and just so happens, on Monday, 25th her birthday was the third her birth. Her third birthday was on the 25th Okay, and so so three years ago, we actually went to the hospital and were there that the day that she was born, and got to hold her and everything like that. And so we've watched her grow up for different reasons. The Father is not in the picture, not on the birth certificate, everything else, and so I am the main male figure in her life. And she's still my niece. I'm still uncle Kyle, but she's my niece, right? This is, this is almost like my kid, and now she's my roommate, and so we have fun. And everything else difference being that it's my wife and her sister. So her sister is the mom and she's the aunt, yeah. And so there's, there's other female,

Scott Benner 41:33
there's the yeah, there's a step between your wife and the niece, whereas with you, it's just you, yeah,

Kyle Kondoff 41:40
and, I mean, there's still, now, my other sister in law, she's engaged, and so that uncle, future uncle, is going to be in the picture as well. And, you know, at one point, hopefully we compete as to who's going to walk her down the aisle, or whatever else, or maybe my sister in law meets somebody else, we'll figure everything out, and hopefully 25 years. But, but for right now, it's, it's awesome to be part of that life and see this kid grow up and

Scott Benner 42:06
she's, she's making you want this idea of a child even more.

Kyle Kondoff 42:10
She actually, no, because, I mean, I've watched her grow up being dead, honest, for me, it's been financially, emotionally and mentally, physically draining enough to have this process go on that I've come to terms myself with us not having a kid and being okay with that. I'm doing this with my wife because I love my wife and I will keep on doing whatever she wants to do. But that's why I have all the jobs. I have the extra jobs so that we can pay for this. I have this stuff so that we can satisfy the want to have a kid, because it's not a need. And I say that selfishly, but at the same time, it's true, right? There's plenty of people out there that don't have kids, but it's something that, obviously we've, we've gone through and have gone through for going on nine years. It's

Scott Benner 43:06
very honest of you to say, I also want to tell you that if you think coming up with 20 grand to harvest some eggs is tough, wait till that egg wants to go to college 20 years now you're gonna, you're gonna be, you're gonna be wishing somebody just asked you for $20,000 Yeah, my gosh. Okay, so in this entire like, drama that's been going on for years, how did you and when did you decide to start a nonprofit? What made you think, like, I'd like to start a nonprofit to help people?

Kyle Kondoff 43:35
Yeah, so think I mentioned it before, but T Wendy fire, our mission is rescuing diabetics in their time of need. So it's called T windy fire because I'm a type one diabetic and a firefighter, tried to think of something catchy, like, Hey, let's go with this. And so it was originally tea windy Fire Department. Don't get it confused, government wise, or anything like that, but we officially started the nonprofit in 2021 got the papers all done and everything else, but I've been doing it locally since at least 2018 okay, what? I actually went back and looked at my Facebook messages from the first person. This is a pay it forward. I was gifted eight vials of insulin by somebody back in July of 2018 whenever I was in need and I wanted to help other people, and that's the way that I got into firefighting. That's way that everything happened in my life. So I started a nonprofit doing that. First, I just did it out of my house and just collecting stuff or connecting people, whatever, like I said locally here in the San Antonio area, but now we've progressed to national. Now we progressed, and I will say International, because we actually had somebody send stuff from Canada, which was pretty cool. Totally different insulin too. But we help people by getting the supplies that they need, as well as doing other things. So. We actually have our website live today, which is awesome. T when D, fire.org, and so super stoked for that. And hopefully by the time this comes out, there's a lot more things on there. But I have been helping people for a very long time, just by community aspect, because people have donated supplies to help others. And so now it is a community driven project through the nonprofit and through the help, and actually posting on Juicebox, because that was one of the most, the best helping groups.

Scott Benner 45:32
We got good reach in there, for sure, the

Kyle Kondoff 45:35
supplies, yeah, we have had since July 9, and again, it's August 25 we haven't gotten any in probably a week, but we've had 68 packages delivered from across the nation with supplies, and I'll give a shout out to your state, New Jersey. Specifically, we got a flipping barrel. And I'm not talking about a small barrel. I'm talking about a barrel delivered to the house, to where the UPS driver had to get a dolly out to wheel this thing up to the house, because there was so much stuff.

Scott Benner 46:10
I don't know why Jersey gets a bad rep. We're reasonable people here. That's awesome. How does it work? Like because I'm Yeah, I mean, you know this, I assume, because it's gone back and forth so many times. But I'm in an awkward position, because Facebook doesn't like it when people give each other medical supplies. Correct, yeah, it causes a real problem. Correct? If I didn't police that, it could really, it could be a bad thing for my group. So anytime somebody does that, we take those posts down, you know, we say, like, I'm sorry you can't offer medical supplies. Can't ask for medical supplies, but, but what I've kind of learned to do as the as the person running it is, first of all, no matter what I do when this isn't me complaining, but no matter what I do, someone's mad at me. So I can never win. I can never win there, which is fine, I've gotten past that in my life. But what I do is, when there's more, like a natural disaster thing. I've learned that like those posts, if I leave them alone, those seem to go okay, right? But if somebody is just like, look, I went on vacation, I didn't bring enough of this. Can somebody please? I can't let those posts stay up, right? And so I'm stuck removing them. I want to ask you, have in your perspective, have I been reasonable about your posts?

Kyle Kondoff 47:24
Oh, yeah, absolutely. And

Scott Benner 47:26
trying to gage, you know what I mean, like the whole, yes, yeah,

Kyle Kondoff 47:30
yeah. And that's why, you know, I haven't put on there. So I will say this, and it's not to compete with you, but everybody's got to have their own Facebook group. Is I've got to create a T Wendy fire Facebook group. I have a T, 1d, fire Facebook page, but we need a group where we can talk about it, right but early on, and this may have been from somebody else right now, it's in my head only that, but insulin is called Life water. You have to have keywords for different things so that the algorithm, or the whatever Facebook

Scott Benner 47:58
until they figure out that's what you mean by that, and then exactly

Kyle Kondoff 48:03
there's buy, sell, trade, all these groups, whatever, I will say, all those people are doing stuff illegally. We as a nonprofit, and I know this, and I'll say this on a podcast, and I've already said it on our news, we are doing stuff illegally. I could have the DEA come knocking on my door any day now. Now, somebody that I did meet whenever I was out in because I was out in Kern County, and that's whenever I wrote the Facebook post that I did and either shared in the group or wrote in the group. But I was on the banks of the river, and I was watching this, and I was just thinking, what if somebody was diabetic at the time these rising waters, they came in an instant, whatever. But what if one of these kids is okay, but all their supplies are gone, you know, and that's what got me thinking about that. And again, push more for T Wendy fire, that I was already doing for the last seven years. I wanted to put it out there and say, look where all your stuff is going. Look what's happening, and try to put the progress through all this time. But who I met out there was the United Cajun Navy. And the United Cajun Navy told me specifically, they said, Yeah, the government absolutely knows we're doing things. The government absolutely turns their head whenever we're crossing the red tape that they can't do. And in fact, the United Cajun Navy guy that I met out there. I started telling the other guy about T Wendy fire, and he stood up out of his chair and turned around and he said, Hey, man, I really appreciate what you're doing. I said, Oh yes, sir. I said, these people need help. He said, My daughter is a type one diabetic. And I was like, Oh, okay. So I ended up talking to him for 15 minutes about everything, and they have a 200,000 square foot warehouse that he said, I'm going to keep your car. We'll be in touch and stuff. But if people need supplies, how can they get a hold of you? I said, Here's my information. Absolutely have them reach out to me. That was that haven't heard anything right now, but doesn't mean that I won't in the future, because, knock on wood, we've had. A decent hurricane season so far.

Scott Benner 50:03
So do you have supplies somewhere and it when they're in need, you take them, or do you wait for something to happen and then rely on donations that come in to help those people? Both, both

Kyle Kondoff 50:13
what we had, I have, I had nine of the Costco size black totes with the yellow lids. Everybody knows those big storage boxes. I had nine of those. And this is, this is how the flood time actually progressed. Und fire gave us the opportunity to grow. Is we had nine of those boxes. Now we have 30, and that is due to the donations of everybody throughout the time, plus the stuff that I've already taken over there, delivered to Kerr County, as well as San Angelo, which is 200 miles away. Kerr county is 35 miles away from me, so I've gathered stuff over time from people. And here's what I tell people, and this one's funny whenever you say it on the podcast, and stuff is, I've had people send me animus supplies. I also already had some animus supplies. So I had g4 g5 that I finally threw out. I've got insulin that I finally threw out that said 2018, 2019, on it. It's been refrigerated the whole time, but all this stuff has been accumulated throughout the time because of the cost of everything. We probably had $70,000 worth of supplies at one point, I did calculate it all, and since the floods, I haven't calculated everything, but I know that we have at least $300,000 worth of supplies. We have at least five boxes of Medtronic five boxes of tandem supplies, two to three boxes of Omnipod supplies, g6 is G sevens, freestyles, and we have tons of syringes, tons of lancets, tons of test strips and meters as well as adhesives and everything else. You know, anything you can think of. Diabetes wise, somebody has sent us. We got diastics too. So

Scott Benner 51:54
keto sticks. So listen, instead of bothering me, if you have stuff you want to donate, just go to Kyle's website and figure out how to do it there, like leave me out of it for God's sakes. Yeah?

Kyle Kondoff 52:03
Somebody, somebody actually did tag us the other day, which is awesome, because that means that our name is already getting out there. Yeah, well, it's very cool, really

Scott Benner 52:09
cool. I can't tell you how much I wish that this wasn't an issue, because I do think that my group is so big and active that it would, that it really would be very valuable in these scenarios. And daily, somebody's like, I have these. What do I do with them? Also, by the way, there's an overlap with online scammers right now, which they love. They love to put up pictures the CGM and pump supplies, and go, Hey, I have this extra stuff. I don't want it to go to waste, like, you know, and then they, they try to bilk you out of shipping. Usually, that's usually the scam, right? Like, I just thought I'd like to give it to give it to you for free. Just send me $20 for shipping, and then they, then they go away and they keep your 20 so, like, that's even tough, because I can't police it to that level. Like, for sure, I have a lot of blanket policies that I have to, I have to tell you. Like, I tell everybody listening, I wish they were more nuanced. But, you know, it's just me, so I don't have time to be more nuanced. If you're offering stuff for free, your post gets taken

Kyle Kondoff 53:06
down. Yeah, no, and it's absolutely understood. I look at that stuff and I see that I have actually been part of a group before that was run by our local JDRF, and then they had to step off, and I became the admin for it because somebody was doing exactly the same thing in the area now, and I will say I've got support through breakthrough now, obviously JDRF before I've got support through them to where, if they know somebody's in need, they will reach out to me. But the reason why T Wendy fire came about is because of pay it forward. The thought process behind it was that we're going to become a nonprofit pharmacy, and that's a lot of red tape as well as you have to have a pharmacist, you have to have an endo or an MP, or somebody that takes on that role to prescribe this stuff, and then they would actually get a prescription instead of the supplies that we already have. And that's not a no benefit to me, because I don't get rid of this

Scott Benner 54:03
stuff that we have. It's also no benefit to somebody who's floating down the street right now and need something right, correct? Where are they gonna go? To the pharmacy? Right?

Kyle Kondoff 54:10
I've also been contacted by several other people that are doing this across the country, and seen a couple other nonprofits that that have this rolled into whatever they're already doing. But, no, it's illegal, but people always put and I don't want to bad mouth anybody, but I want to say this for real, because this is exactly where it goes. People put insulin for life on things, and it's a great organization. However, what you don't realize is, because of the legalities of it, insulin for life sends everything overseas. They cannot give anything to anybody in the US.

Scott Benner 54:42
I think I heard that before, right? Yeah, their stuff, yeah, yeah. It goes overseas,

Kyle Kondoff 54:46
yeah. And still goes in need,

Scott Benner 54:49
yeah, it's going somewhere, not just sitting in your cabinets and rotting, right?

Kyle Kondoff 54:53
For sure, yeah. And I've got no problem with anybody else that does this, man, it's the problem that I have is whenever people start charging. Because exactly what you said, not only is there scammers, but if you look and it'll probably come up on suggested. Now, am I sponsored on Instagram or Facebook? Is the We Buy diabetic test strips type thing? And people are scammed by that too. I've had people reach out and be like, hey, I want to buy test strips from you. And I said, No, thanks, you know, and that's not illegal because they're not prescription. That's what people don't understand, is the pumps, the CGM and all that stuff, unless you find somewhere that you can buy it over the counter, and you can't even buy the transmitter Costco anymore over the counter, then you can buy the test strips, you can buy a meter, you can buy the syringes and pin needles and stuff like that over the counter. So you can give that stuff away. You can also sell it, although it's kind of dumb to do so. But why not have something that everybody can have, like the pumps and CGM? Because that's what people need the most.

Scott Benner 55:54
What are the rules that you have to stick to so that you can do this? Like what makes it legal versus illegal?

Kyle Kondoff 56:00
So it's not so much legal versus illegal for me, it's whether or not somebody can show me that they have a prescription for something. Because I just want to Cya in a way that I know they're not going to go sell it. Yeah, I know that. And like I said, I've said this on the news before. I know that what we're doing is illegal. I would not be surprised if DEA comes knocking on my door, but they have a lot more other things to worry about. So Drug Enforcement Agency, for anybody unsure, but I mean, that's what it is, because they are prescription drugs,

Scott Benner 56:35
yeah, so that anybody who's doing this, anybody who's collecting, yes, medical supplies and redistributing them, even if it's in, you know, a time of crisis, they're breaking the law.

Kyle Kondoff 56:47
Yes, okay, yeah, yep, we are absolutely breaking the law, because you cannot give somebody else's prescription to somebody else.

Scott Benner 56:53
How do you get a nonprofit distinction for this thing? So

Kyle Kondoff 56:57
the nonprofit is created to help people in a way, the decision that we made through the floods was to go through and say, Okay, we're going to give supplies away. But rescuing diabetics in their time of need covers a lot of things. Something else that I've seen lately is the national nonprofits don't really want to have in person events. Don't really want to help the diabetics of today. And I say that as somebody that's been a part of one of those, I am still a board member for breakthrough T and D. I was the volunteer chair and community engagement chair for my chapter, and watched a lot of things happen nationally. I even talked to Aaron Kowalski about my nonprofit and said, not that y'all aren't doing anything, but our nonprofit was created to help the diabetics of today, and when I say diabetics, I mean all diabetics, but we have educational resources. I've created some myself. I'm working with first responder center for excellence on an educational resource for type one first responders, as well as for fire chiefs, because, as I said on episode 546 I was unsure that I could get a job. And there's a lot of guys that have contacted me throughout the years that were unsure that they could get a job. And so want to make sure that chiefs know that, because the largest fire department in the world, FDNY, doesn't allow type one diabetics. And so just trying to help out with that knowledge, but also, eventually you're going to create something for male infertility. These things will be available on our website, but we need to help people with emotional stress and mental stress. I hope that we could raise a whole bunch of funds and stuff. My job is firefighting, and I don't plan on taking this off as a full time job, because I love my job as firefighter, but I want to help people however I can. So if we can raise funds, then we will do our best to help people, but it depends on exactly how big we grow. I don't plan on having fundraising events and stuff like that for a very long time, though, but just get togethers and things of that nature, something that has come about recently through this nonprofit and through the flood stuff and everything else, is how much we need to help everybody across the country. And so we built a T and D Fire Rescue network. We've contacted other first responders. We got I made a call out, and I think I put it on the Juicebox podcast group as well, but trying to ask people, if you're a first responder, can you please contact me whether you are a first responder, whether you're a type one for type one diabetic first responder, or you are a family member of a type one diabetic and you're a first responder through that, and I don't have a problem with it. I've had a mental therapist contact me. I've had a PA contact me. I've had an NP contact me, and I think we have a couple of those. So now I move it towards medical professionals. If you're a medical professional and you want to help people that has a type one connection, you're impacted by by diabetes, excuse me, not even a type one connection. If you're impacted by diabetes in a way, and you're a medical. Professional, then you can be on that rescue network. I've had lay people, regular people, reach out and say, Hey, I'm not any of those. But how can I help? That's great, but right now, I want to build our network, our rescue network, right of the medical professionals to help out. And through that, we're going to have connections. We already have a group me where we all talk and everything, but we'll have a call out whenever something happens in their area, and we say natural disaster, but also if somebody needs help some other way, then they will let us know. And I am the one who's holding everything, and that's because we don't have a central location right now. The central location is San Antonio, Texas, but I hope to have a north, east, west and south location that we would hold stuff, but we have a storage unit here, and that's where everything is.

Scott Benner 1:00:47
I wish you luck. I hope, I hope you can get it set. I mean, it really does feel like it's incredibly needed, and at the same time, it feels like it's roadblocked every time you try to do something, even just a person like me is under pressure to go, Oh God, no, you can't post that. That has to come down right now and take it down like I can't imagine the pressure you're feeling from what you're trying to

Kyle Kondoff 1:01:07
accomplish. Yeah, and there's got to be a I don't give a crap attitude about it, I'll be honest. And I've had that for a long time because, and I mentioned this before that. I said it on the news. I've watched people I don't care if DEA comes knock on my door, because I've watched people struggle as to whether or not they could feed their families or buy their kids insulin. And that happened locally as well as nationally. I've watched the insulin rationing happen for years, and watch the different people die from it, and seeing the social media posts of that person that died, wherever they died, because we had quite a few of them for a win, a rash of them, really, for a bit. I don't know if that's a problem now, with insulin prices going down. However, whenever there's somebody on Instagram that comments on my stuff and they say, Oh, wow, this is or UK, but it's great that you're doing this. I just can't believe that you have to do that because they don't have that problem in England. They don't have that problem in Germany, they don't have that problem in Canada. This is a US thing, and I won't get into politics and all that stuff, but it's crazy. If

Scott Benner 1:02:18
someone did come knocking on your door, what would they charge you with, I don't know.

Kyle Kondoff 1:02:24
Maybe a really good question. It could be distribution. And who knows what exactly that would be.

Scott Benner 1:02:30
Technically, you're a drug dealer. Is that, right? I

Kyle Kondoff 1:02:33
mean, yeah, I guess so. Because, because, again, that's my problem with it, right? Is, I mean, is that drugs? No, it's not drugs. And I say that whenever I do my diabetes, 101, or whatever talk you want to call it is Insulin is a hormone. They categorize it as a drug. Ever since Banting and Best made it so that they could sell it. But of course, they only sold it for $1 so that everybody would have access to it, and it just got price gouged like crazy, yeah, Now the price has gone down to $35 a month, or $35 a vial, whatever it is. But still, that's astronomical compared to what it was to make so but it's a hormone. Your body makes insulin. Other non diabetic bodies make insulin. Type two diabetic bodies make insulin. Just can't use it. So if my body doesn't make much insulin or doesn't make any at all, then why am I charged so much money? And I don't have the debate with people whenever they say, Oh, well, why is Narcan free, or why is methadone free, or anything like that. I've been on enough drug overdoses in my lifetime as a first responder

Scott Benner 1:03:36
that should be everywhere. Yeah, yeah.

Kyle Kondoff 1:03:38
Actually, it might have even been in your group. No, it was in a different group. Yesterday I saw a post that said, how low do you have to be before you think that you need to go to the emergency room? I slapped myself in the face right there, just like, oh my gosh, are you kidding me? Eat some fast acting cards and move on with your life. But it's the lack of education through all of that that I've seen and so that goes into the rescuing part of it as well. It's just trying to help out the diabetics of today in whatever we way we can. Right now, it's through the supplies and everything, and it's going to be that way for a very long time. My wife even asked me, she said, because she takes the picture whenever I'm at work, she takes a picture of it at our front door, and then I put the number on it, and we move on, put it on social media, move on. She said, When do I have to stop counting? And I said, Honestly, never. Because I want to see how many packages we can get. Because I already put up a post for the Tennessee floods. I don't know if we got anything from the Tennessee floods, but we didn't get any requests for any supplies. And again, social media unfortunately stopped that as well. We have to go specifically to those pages to find out if anybody is in

Scott Benner 1:04:46
need. Yeah, it's going to and it's gonna keep there. I mean, in the end, it's about liability, and Facebook doesn't want to be liable, or whatever platform you're on doesn't want to be liable. If you solicit for something, someone gives you something, you give it to somebody else, and. To get hurt, they're going to say Facebook allowed it. So that's that's why they have that rule. And then they pressure me and other people who have larger groups. They're like, look you, if this happens like, you should see the reporting that happens behind the scenes about like, is your is your group healthy? Is it like you should see the way they talk about it? Yeah, for sure, they find a way to pressure you.

Kyle Kondoff 1:05:22
I'll get off of Facebook and just say, not only that, but the national nonprofits, that's where we've come into a problem as well, because so many people sat on the groups or tried to contact there was somebody else that was collecting supplies here locally, and they were trying to contact the Red Cross. Well, I've got somebody that used to work for the Red Cross, and they told me they're like, told me they're like, We don't take any of that stuff. We can't do any of that Salvation Army, same thing. They won't mess with any of that stuff. Will they connect me with somebody under, you know, in the underground area, I was able to go there and actually hand out my business card to them, and so they have my contact info, and now united kitchen Navy has that hopefully I get contacted for things in the future. But this is bigger than me again. This is a community. This is everybody that supplied all that stuff. This is the 68 packages that came in, plus all the stuff I collected years before. And I say that actually coming home from the firehouse this week with something that somebody delivered to my old station, and I was able to go up north this time and collect it. And so I have other stuff here, because it wasn't just 68 pack. I also collected at least 15 locally, and I had people bring stuff to my house. So people want to help. But yes, the the politics and everything

Scott Benner 1:06:40
is stopping it. No, a lot of people want to help. And I would say this too, is that I imagine, like, you know, I asked what would happen if they came and knocked her in your door? I would imagine that nobody's going to do that because they wouldn't like publicly what it would make them look like, like public public opinion against something like that would be very significant. Like, yeah, that's

Kyle Kondoff 1:06:57
basically what United Cajun Navy told me, is like, they would be shutting us down. And think about the backlash that they would get. You know,

Scott Benner 1:07:04
it feels like a tiger's tail you wouldn't want to pull if you were there. Yeah, you were the municipality. You know,

Kyle Kondoff 1:07:10
I'll compare this to the big story of this last week, right? It's Cracker Barrel. Think of Cracker Barrel, and say you changed the logo and everything, and now all of a sudden, look at the backlash they got, right? Yeah, the backlash they got. So they said, hey, guess what? We're not changing. Like, because public opinion means something to

Scott Benner 1:07:29
everybody. Yeah, I have to tell you, if you pointed a gun at me and told me to describe the Cracker Barrel logo, I wouldn't have been able to do that. But apparently it's very important to some people. So it's a good point, you know, and that's just my point too. Like I wouldn't think that in the middle of a flood, a local municipality is going to shake you down, because five seconds later, you're going to be standing in front of a news camera saying, Look, I'm just trying to big, redistribute these supplies that people in need, and they're arresting me. And right? Nobody's going to want to look like they're on the other side of that. I would fit right, right, but at the same time, if you screw up and somebody gets hurt, there's going to be no no one will come to defend you,

Kyle Kondoff 1:08:09
absolutely. And I will say, we no longer do right, but we used to give. And I say we I took on that responsibility that was not the nonprofit, because now this is the nonprofit, but I took on that responsibility. I used to give the expired insulin to people. What I did was I was using the 2018 2019 insulin until I got on my pump. Now use limdev, and so all my stuff is current, since it's so new, but I was giving people the newest insulin. And so I still left with the expired insulin. Now we've thrown away everything that's expired, and because of the donations of everybody, we still have a ton of insulin people to do it. It just It honestly sucks to throw stuff away right again. Like I said, we had animus supplies. Why did I keep animus supplies for so long? Nobody's going to come to me and say, Hey, I need animus supplies. But it's still a lot of money, it's still supplies, it's still stuff that you don't want to have thrown away, and diabetes has made me a hoarder no matter what. But this is increased through the nonprofit, through the collection of supplies.

Scott Benner 1:09:12
I'll say this, if Kyle's helped you somehow, or the the organization's helped you somehow, like, send him a note and tell him let so somebody can put on his website to show that he's been helpful to people. Because the, you know, I think that would be be something that other people would be interested in knowing, and it might be a nice way for you to, you know, put a shield around yourself a little bit so you can see that you're not because, you know, like, what if you were just doing this? Like, hey, I'm going to help everybody in a flood. And then you get all the stuff, and then you go sell it to one 800 whatever. It's not crazy to think that the different levels of devious or crazy that I run into every day makes me realize that nothing's out of the question, like something that most people would hear like, Oh my god. Would I ever say that I was helping somebody in a natural disaster? Then take what was sent to me and read. Sell it, I would never do that. I think right, 99 out of 100 people would be like, just flabbergasted at that idea, even. But there's one person out there that's like, Ooh, I got a business that's got to be protected too.

Kyle Kondoff 1:10:11
I'll compare it to two things. I'll compare it to covid masks, because there was the guy that had all those covid masks, and I think the government came and seized them because they were short or whatever was happening. But he was buying them up either ahead of time or literally, whenever they were first coming out with covid. And he had tons of covid masks as well as hand sanitizer. And I can't remember how much they said, everything was valued, but he was trying to sell stuff, and then let's price gouge diabetic Barbie, right? Because we know that it's a thing, so let's buy this thing, and then we're just going to price gouge the crap out of everything for the 3995 or I mean, take your pick. You know, it was with Furbies so many years ago. So yeah, what I'm saying there is, yes, I absolutely understand that. And same thing you said with the scammers earlier. That's why, whenever I send something to people, and I will say that I was bad about this for a very long time, but now I've gotten better. Is sending them the tracking number. You have to send the tracking number. I had so many people again, 68 packages. I had people that were like, Hey, did my package get there? I'll admit. I'll raise my hand right now. I know you can't see it, but I'll admit I was horrible about it. My wife was like, You need to track this. You need to let people know that their stuff came I didn't do that because I was so busy with everything, and I was trying to get out there so many times as well as do all my other jobs. And so now, whenever something happens, I need to track it from that person to us, and then I need to track it from us to the person in need, if we're shipping it somewhere right now, because we're so small and because eventually, hopefully the nonprofit can cover it, but most of this is coming out of my wife in my pocket right now, for the shipping is we do ask for the shipping costs to be covered, but there's people who are like, I can't do anything for shipping, but I can send you these supplies. Whenever you come back with this stuff. I was like, Hey. I mean, whatever works works, you know. And if you can't pay for it, then I don't want to say that we'll cover it, but shoot, we'll cover it. The other thing is, I'll, I'll drive up to Tennessee, if I have a truckload of stuff, you know, and actually deliver supplies to some place. But I can tell you through these floods, it is so, so so hard to try to actually go get these supplies to people, as much as you want to help people. The reality is, and I hate to say it this way, the reality is the type one diabetics were either swept away in the flood or because this was the fourth of July flood, they're away somewhere else, and you can't even get access to those people, because the locals weren't hit as bad. They were hit, I don't want to take that away from them, but they weren't hit. Diabetic wise, we were able to give a whole bunch of stuff to the free clinic there in Kerrville. And so they were appreciative of

Speaker 1 1:12:52
all that well, for so many different reasons. This is a difficult thing to accomplish, and anybody who's out there like actively, honestly trying to help people. You have my respect. I think it's awesome. I want to, I want to tell you that I wish you a ton of luck helping people. I know it's hard, and I want to also wish you luck with getting pregnant with you and your wife, and I thank you very much for coming and doing all this. Because, I mean, again, this is a great episode for people to hear, and hopefully it'll spread the word about what you're doing, and it won't end up with a DEA agent at your front door. It's just, it's nicely to come on and tell this whole story. Is a lot of honesty in what you talked about here today. But you know, between the inability to, you know, to get pregnant, and all the stigma that goes with that, and still being willing to speak about it, and then this next thing, which I mean by your own admission, like could cause you a problem. You're like, Hey, let me go tell more people what I'm doing, because I know it's helping people. I think that's very brave. I appreciate

Kyle Kondoff 1:13:50
it, yeah, and I probably should have put this disclaimer ahead of time, but this is all by words, nothing for any agency that I work with, or anything like that. So yes, also, let me say

Scott Benner 1:13:58
that nothing you hear on the Juicebox podcast should be considered advice, medical or otherwise. Always consult. Otherwise, always consult a physician before making any changes to your healthcare plan. Listen, it's a reality of life. I think anybody would, anybody reasonable understands that, but at the same time, like it's not nearly the first thing in my life that I say there's a huge need here, and there's nothing set up to help people? Yeah? And no one's coming, right? Yeah? That's the other thing. Like, if you're waiting for the system to step up and do something, here you are out of your mind. It's always going to be somebody on the ground who's a little fed up and a little motivated. That's how most of this stuff's usually going to go on. Yeah? Anyway, Kyle, I thank you a ton. I've got to cut you off here, because I'm out of time. But if you want to give your website again, please do,

Kyle Kondoff 1:14:44
yeah, it's T, 1d fire.org,

so just T, 1d,

f, i, r, e, dot O, R, G,

Scott Benner 1:14:53
okay. Thank you so much. Hold on one second for me. Okay. Okay. You.

Having an easy to use and accurate blood glucose meter is just one click away. Contour next.com/juicebox That's right. Today's episode is sponsored by the contour next gen blood glucose meter. Thanks for tuning in today, and thanks to Medtronic diabetes for sponsoring this episode. We've been talking about medtronics, mini med 780 G system today, an automated insulin delivery system that helps make diabetes management easier day and night, whether it's their meal detection technology or the Medtronic extended infusion set, it all comes together to simplify life with diabetes. Go find out more at my link, Medtronic diabetes.com/juicebox,

hey, thanks for listening all the way to the end. I really appreciate your loyalty and listenership. Thank you so much for listening. I'll be back very soon with another episode of The Juicebox podcast if you're looking for community around type one diabetes, check out the Juicebox podcast. Private Facebook group Juicebox podcast, type one diabetes, but everybody is welcome. Type one, type two, gestational loved ones. It doesn't matter to me, if you're impacted by diabetes and you're looking for support, comfort or community. Check out Juicebox podcast, type one diabetes on Facebook. I created the diabetes variables series because I know that in type one diabetes management, the little things aren't that little, and they really add up. In this series, we'll break down everyday factors like stress, sleep, exercise and those other variables that impact your day more than you might think. Jenny Smith and I are going to get straight to the point with practical advice that you can trust. So check out the diabetes variable series in your podcast player or at Juicebox podcast.com the episode you just heard was professionally edited by wrong way recording, wrong way, recording.com.

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