Abby Fox (Intro): Welcome to the Still Caring Podcast, presented by Stillwater Medical.

Joe Akin (Intro): Here, community is at the heart of healthcare.

Katon Lunsford (Intro): Through honest conversations and shared experiences

Abby Fox (Intro): we explore what it means to care for our health—

Joe Akin (Intro): and each other.

Katon Lunsford (Intro): Because better health takes a village and you're part of ours.

Joe Akin (Host): Today's conversation is with someone a lot of people in Stillwater already know and respect: Steve Irby, founder of KICKER. Good morning, Steve. Appreciate you being here.

Steve Irby: Good morning, Joe. Glad to be here this morning.

Host: Thanks so much for sharing your health journey. Your story isn't just about business, it's about family, genetics, and a health journey that started long before you knew it would affect you.

Your grandfather passed away from polycystic kidney disease. Your mother passed away from the same disease. And because it's genetic, you knew there was a 50/50 chance that it would be part of your story too. So, what followed was years of waiting, uncertainty, and eventually a kidney transplant that changed everything. So, this is a conversation—or I should say this conversation isn't about a hospital or a procedure. It's about understanding risk, paying attention to your health and what it looks like to walk through something like this over time.

Steve Irby: Right.

Host: I'm Joe Akin, and I'm glad you're part of this conversation. So for full transparency, I was fortunate enough to start my career working for you, and it was 12 great years that I will absolutely never forget. It was fantastic. thank you for that. But before we get into the medical side of things, when people in Stillwater hear the name Steve Irby, what do you hope they think of?

Steve Irby: That's a good question, Joe. I really had have never pondered that question. As I thought about it a little bit though, I thought maybe I'm a little bit like Aretha Franklin, just like a little respect, you know? You know, that's all. And I think that's something that you just have to earn every day. It's not something that, because of your position or who I am or what I've done, I don't want respect for that. I would like respect for the way I treat people and act On a day by day basis. I think, to me, that's nice. Yeah.

Host: I would say with a level of confidence, you definitely have that. Let's go ahead and get medical. And I want to make sure people understand what we're talking about. So, polycystic kidney disease or PKD, I'm going to say it that way, because it's easier for me. It's a genetic condition where fluid-filled cysts grow inside the kidneys. And over time, those cysts can get large enough that the kidneys lose their ability to function, which can lead to kidney failure. And there's currently no cure for PKD. But thankfully, it's treatable as everyone is soon going to hear.

So, Steve, your grandfather passed away of PKD. Then tragically, your mother passed away of the same disease in 1971. And at the time of your mother's passing, how much did you understand about what was happening?

Steve Irby: Probably not a whole lot. I knew that she had that. But frankly, growing up, I didn't know that. I didn't know too much about my granddad. I had never met him. But as time went on, I think my mother probably felt that she didn't have to explain everything to me right away. But as her disease began to progress, when I was in college, we talked about it. And I think that I knew that there wasn't a cure for it, but I always felt like that maybe by the time that my condition worsened, that there would be more medical knowledge to deal with it. And so, she was kind of a pioneer in that area.

Host: So at what point or approximately what age did you actually realize and accept this could be something that you had inherited?

Steve Irby: Well, actually, they started testing me because they knew that there's a possibility of that. I think, when I was in college, probably 19 or 20, they would inject the dye, and then do an x-ray. And they determined that I had some of that. Actually, it wasn't terribly concerning to me, because I knew that it developed very slowly. But I knew that I had it. And so, I would say it wasn't a traumatic experience. It was more like an acceptance of this is kind of the way things are.

Host: So if I heard you right, you never really had any symptoms, but you decided to get tested anyway. So, walk us through that decision process for you, because many of us have never been there.

Steve Irby: Well, I think the decision to get tested was primarily by my doctor's because they knew that my mom had it. And so, they want to test the kids to see if they have it and what kind of preventative measures that you can take as you grow to lessen the effects of it. And so, it wasn't really my idea. It was just something they said, "You need to do this and get tested." And so, It wasn't really my initiative to do that.

Host: So in that moment though, when you heard the results, because I was trying to put myself in your position and my mind, where it would go. In those moments, what ran through your mind?

Steve Irby: I hope that it doesn't develop very fast. You know, I guess that was the main thing. My mother and I had talked about this and she said, "By the time you have issues with this, there will probably be much better treatments for it and even kidney transplants." She actually had a kidney transplant. Her and another lady had the first ones in Oklahoma. She was kind of a pioneer in that and wanted to do that, rather than be on dialysis, which is in those days, you had to drive to Oklahoma City three times a week and spend the day down there. And so, she liked to do things and be active. And I think that was a motivation and also just to maybe kind of pave the way if her kids had to deal with this too.

Host: So, knowing that you had the same potentially fatal disease, but it sounds like there's a very upbeat thought process going through you and your family. Did you ever have to deal with or manage any sort of emotional or mental health issues from it, like depression or anything like that?

Steve Irby: I think my main mental health issues were what the heck am I going to do when I get out of college?

Host: So, very normal.

Steve Irby: And it kind of all happened at once and I found out about this. But it wasn't so much really based upon the physical issue. It was more just, "What am I going to do with my life? And I've got this condition that's going to develop." But I just didn't know exactly what the heck I was doing, you know? But it wasn't just because of the condition. It was more just uncertainty about my future—really my job, I think.

Host: A few years down the road, life is progressing and you're in it. I mean, you have it, it's starting to take a hold. What did you do? Just walk us through that story, through that journey.

Steve Irby: Well, I would get tested every year, and that was something that they did. And the other thing is that they want to watch your blood pressure really closely because too high blood pressure can damage obviously more than just the kidneys, but internal organs, because it's pushing things through too hard.

And for someone with polycystic kidney disease, the cysts are starting to squeeze the kidneys. And if you're trying to push higher blood pressure through there, it can actually exacerbate the condition and make it worse because you're putting even more pressure that way. So, the main thing was to watch my blood pressure, which I think in my 40s, I started on a blood pressure medication, not because it was excessively high, but just to keep it in the normal range without being elevated at all. And so, that was the main thing that really I was encouraged to do and live a healthy lifestyle.

Host: You ended up going Mayo for treatment. I think that is a fantastic story that I think everyone would like to hear. So once you and your physician determined that you were going to need to get a kidney transplant, could you just take us all on that journey with you?

Steve Irby: Well, actually going to Mayo was after the kidney transplant because they discovered, and which we knew, that I had a polycystic condition in my liver too, because it can be in your kidney, your liver. Sometimes they even check your brain. I mean, it can show up there. I don't think they checked my brain. I guess they thought it was bad enough, you know. But That is something.

So, it's kind of weird, but it can show up. But generally, it's going to show up in the kidneys. So, that was kind of another story. But what happened was that I was regularly monitored. And I was connected from my doctor here at Stillwell Medical Center at the physician's clinic to a nephrologist in Oklahoma City that I began seeing 25 years ago, just on a regular basis and checking all my blood work. And so, he was at the Nazih Zuhdi Transplant Institute at Integris in Oklahoma City. And so, he was the one that was monitoring me as to when I might need a kidney transplant. I actually didn't have the transplant until I was 65 years old.

So, I made it a long way, frankly, without any serious side effects. Even though I had those cysts, I was still functional. And what they do is they measure your kidney production by the measure of creatinine primarily. And so, they test that and when it gets to a certain point, which means you have 20% function, then you can be put on a kidney transplant list.

Host: Twenty percent?

Steve Irby: Twenty percent to get a cadaver kidney. Now if you're going to have a live donor kidney, and I had several people try to donate me a kidney and for various reasons, that didn't work out. Interestingly enough, my wife was first going to donate a kidney to me. And in the period of testing, they discovered she had a tumor on one of her kidneys that they thought was cancerous. They removed the kidney. It wasn't cancerous yet, but it was the kind that can turn. So, that was kind of a blessing in disguise, really, that they discovered that with her. Then, I had a couple other people that didn't qualify for different reasons. But being on the list doesn't mean you get one right away. It took me three and a half years.

I was on the list just living my life, even at 20%, feeling pretty good, going to the gym and working full time and all these things. When I got down to 8% was when I got the kidney transplant. And amazingly enough, I still felt pretty good at 8%. It's kind of crazy, but still functional, still doing everything. So, I've been waiting and then trying, as you know, traveling internationally. I kind of stopped traveling internationally maybe a couple of years before that. If you get the call for a transplant, you have to be there in a short period of time. I think it's eight hours or something like that. And so, I didn't want to be like too far away.

So, three and a half years later after being on this, and I ended up being on dialysis for only nine months, the last nine months, and I did that at home. It was peritoneal, which is you do it yourself and they teach you how to do that. And I was still able to fully function with that. I just did it at night.

So, I got the call on a Saturday morning. And they said, "We have a kidney for you." And I had a friend that was going to donate me a kidney that had almost passed all the tests, but it wasn't quite finished. So, I had to choose, am I going to wait on this person, or am I going to take the one that they have for me? And this is like 7:30 in the morning on a Saturday morning. And you got to decide right then, because you got to drive down to Oklahoma City and get the transplant. So, I didn't know what to do. So, I just prayed, you know, asked God to show me which way to go here because I've got two options. And I thought, well, I'll call my kidney doctor, my long-term kidney doctor and just say, "What would you do?" So I called him up and he said, "A bird in the hand is worth two in the bush." And I go, "Got my answer. Okay. I'm going to Oklahoma City." And so, that was how that worked. And Becky and I drove to Oklahoma City. And I think by noon I had the transplant. It's just like, "Boom, boom, boom." I was in the hospital for three and a half days and went home.

Host: One of the things when you and I were talking about this that I thought was absolutely fascinating. I mean, the whole story is. But I was wondering about the actual transplant. And you told me something that I had no idea about. So, I think you know what I'm talking about. Would you tell us that?

Steve Irby: Well, yeah, when you get a transplant these days, they don't remove your other kidneys unless they're causing problems, infection, different things. I had no problems with mine. They just didn't really work very well, And so, they don't take those out because they're way down there, and that's a big operation to take those out.

When my mother had the transplant in 1970, they took them out and they put the transplanted kidney in that same location. But they've learned since then, that's not necessary. And so, what they do is they put the transplanted kidney basically just in the side of your abdomen, and it's a fairly simple operation is what I understand, much simpler than just taking out a kidney. And the kidney's not very big. And it kind of eventually just sort of fits in, it kind of wiggles its way in. And then, I think they connect up the artery and the vein and the ureter to your bladder. That's it. Evidently, it's a fairly simple operation. And then, they sew you back up and you have to recover from that.

Mine took a little bit, they said, to wake up. You know, when you have a transplant and it's taken out of somebody that passed away just right then, really pretty much recently, it can take a while for it to get going. So, I was out and about three and a half days, but it took towards the end of the week before it really started kicking in really well. But it did. So, that was probably the whole scenario. Those days were the most worrisome. Is this going to work or is it not going to work?

And at that point in time, I'm thinking, "I don't know if I can do this again. You just had a surgery." I mean, I could do it again, but I was like, "I really don't want to do that again." But thank God it worked and kicked off and I got a good match. So, I'm almost 13 years in with it now, and I haven't had any rejection episodes. A lot of people have rejection episodes. it doesn't mean you lose it. They have to up your immunosuppressants and bring it back down again so they can control that. But I never had that. And so, they think it'll last for the duration as far as they know. I mean, nobody really knows, but it's just chugging along like normal. I have a test about every six months.

Host: So, all of this somehow led to you going to the Mayo Clinic. And I think anybody listening would love to hear how that came about because when you told me, I was completely surprised. I had no idea.

Steve Irby: Yeah.

Host: So, walk us through that if you will.

Steve Irby: Well, 12 years later, so I started having some issues with some fluid accumulation. They were trying to figure that out. Is it the kidney? Is it the heart? They tested all that. Nope, it's the liver. And I have cysts on my liver, but generally—and a lot of people with polycystic kidney disease have cysts on their liver—but it doesn't affect it like it does the kidneys. So, you can have cysts on your liver and it still works okay. And mine was working okay, but the cysts were kind of squeezing the liver and the vessels and especially the big return vein that comes up back to the heart and through the liver and delivers that blood back was getting squeezed.

My doctor, eventually, we came to the conclusion to go to the Mayo Clinic and see if they can diagnose why you're kind of accumulating fluid. Because things, they're getting restricted trying to go back. And so, it kind of accumulates. And so, amazingly enough, it's easy to get into the Mayo Clinic. You don't even have to have a doctor's recommendation. You just get on their website, tell them your problem, they'll call you, they'll interview you. And I was totally surprised. And it's covered with your regular health insurance. And so, It all worked so smoothly and ended up going to Rochester in Minnesota up there. And they do a lot of tests on you. In fact, they did them all even in the same day. They did the MRI, the blood test, the doctor consultation all before noon. I was done. And then, you wait for their team of doctors, because it's not just one doctor. And the team of doctors, they're primarily diagnostic hospital and they diagnose what's going on. And so, they say you should probably stay about five days. It's a beautiful place. We had a great time up there. Kind of made a vacation out of it. But you're waiting for them to get back to you, you know. And so, they got back on Friday, we went up on Tuesday and they said when I went back in and met with the doctors, "We're sorry. We don't think there's anything that we can do for you." I kind of suspected that and was kind of ready to accept that. But I thought, let's give it a try. So, we go back. And then, on Tuesday morning, I get a call. Well, one doctor hadn't reported back and he thought he could do something.

So, we go back to Rochester. It was an interventional radiologist who they put stents in your veins and arteries and they worked through the vascular system. Anyway, he ended up putting a stent in my inferior ven cava, the IVC, the big one that comes up and opened that up because they measured the pressure, And the pressure going in was high and coming out was low. It was supposed to be equal, and I was awake through the whole process. They could measure the pressure inside. They say, "Well, it still needs more." And they put another stent in. They kind of lined a couple of them up and opened it up. And they go, "Yeah, now the pressure's equal on the bottom going in and on the top coming out." And you're just listening to all this while they're doing it halfway sedated, but really not, I knew what was going on. They're going through your vein in your neck. And that was done. And you wait around a couple hours and get dressed and leave and you're done. And that was it. But that helped a lot and made a big difference. And then, they changed my medication a little bit. And so, we're able to more or less control that.

But yeah, it's an amazing place. It's like a nice hotel. I mean, the customer service is unbelievable. I mean, it's a beautiful place and totally all about the patient. Their total focus is on the patient, nothing else. And you really feel that when you go there. Great experience. I'd love to go back just for fun. We enjoyed it. But, yeah, great people and great hospital.

Host: Yeah. So, your story, I mean your health journey is incredible.

Steve Irby: Yeah.

Host: So, you've gone through this, you're still living it. Has all of this changed anything about your perspective on life?

Steve Irby: Not really actually. It's just something I've kind of accepted as the way things are. I haven't had to do a whole lot of processing with it. It's just like life. You got a problem that comes up, you deal with it, what do you do next? And to me, I kind of see it that way.

So, I haven't had any massive revelations, other than just make the most with what you've got. And think that's the message, is don't complain that everything isn't just perfect in your life and your body the way you'd like it to be. But don't let that hold you back, from enjoying in life and do the things that you want to do. So, no, it's not like, "Oh my gosh, I'm living on borrowed time" or "I've only got so many years left." You think about that because you're getting older. You know, a certain degree you need to make some planning for your estate and stuff like that. But as far as—no, not, not too much different. And that may just be because of the way I was raised, you know, just kind of deal with it and just move on. But I realized some things are much more serious than that. And they're pervasive and all-encompassing. I've been fortunate to kind of make it through some of those things. But I know it's not going to last forever. But this is my experience, i'll say. I don't know that it's going to be everybody's experience. I know some diseases are just worse, much worse. I'm fortunate that this is all I've got, I think, really.

Joe Akin (Host): Yeah. Well, Steve, thank you so much for being so open about your personal journey. And telling our health stories will help other people in and around our community. And hopefully, it gets people talking and thinking about their own health. We always end with what we call a challenge to care. And we ask our guests to challenge all of us to take one step to take better care of ourselves or someone around us. So if someone's listening right now and they've heard your story, what's one thing you would challenge them to do differently when it comes to their health or the health of someone they love?

Steve Irby: I'm sure this has been beaten into everybody's head, but regular doctor checkups, at least once a year to see what's going on. And of course, they're going to test your blood pressure. But you can test your blood pressure at home. I mean, I've got a blood pressure monitor or you can have it tested any place, but so many different diseases are made worse by high blood pressure.

And so, I would say regular doctor's visits and know what your blood pressure is. Don't ignore it. Don't think it's because you can't feel it, don't think that it's not there. Another thing that I have not experienced myself, but is having a—I mean, I've had a colonoscopy, but nobody likes that. But you don't want colon cancer. And that's very preventable with a colonoscopy. And I have friends that have gotten colon cancer and didn't have a colonoscopy just because they didn't want to, and could have prevented it. That's not the case for everyone. But don't ignore your health. Sometimes you think it's just going to go away.

The other thing is that sometimes some people don't really trust doctors. They say, "Well, I'm not going to go to a doctor. I don't really trust them." And you have to remember, doctors are not perfect. But they're there to help you. And so, my philosophy has been maybe you want to change doctors, maybe you want to find one that you can relate to better. But when you settle on that, then work with them, and do what they say, and listen to them.

Host: Yeah, I agree. So that's the challenge to care. It's, you know, take one step, start one conversation, pay attention to something you've been putting off. Stories like yours, they don't start the day you get the call, they start years earlier. And the more we talk about it, the more we take care of each other. So, thank you, Steve, for being part of this, and thank you to our listeners for being part of our conversation. We appreciate it.

Steve Irby: Glad to be here, Joe. Thank you. Good to see you again.