Mike needed a kidney transplant and help with social media. Andrea answered the call…with unexpected results.

But first, I started our discussion by asking Mike to share with us how he found out that he had kidney disease and how he then approached the challenge of making a kidney transplant happen.

Mike: Basically, back when I was seven years old, my father passed away and this was back in 1958. This was a long time ago. He was 44 and I was seven and I always asked my mother all this time, “Well, what did my dad pass away from?” And she always said, “Well, he passed away from kidney disease.” So that’s all I ever knew about. She didn’t elaborate on anything. And the only thing she ever told me said, well, they were trying out some new blood cleaning machines or something like that. So, it was kind the beginning of dialysis, you know, as far as being well known and being used.

I went on with that. I even attended funerals for at least a funeral from one of my dad’s uncles. And he passed away from kidney disease. It wasn’t until, probably about, you know, life went on. I didn’t even think much about it. And in 2006, I went in for annual physical, my PCP, he took a look at my bloodwork, and he says, well, your creatinine and your eGFR numbers don’t look correct. So, needless to say, from that point it was CAT scans, and it was nephrologists and all this stuff. And what it resulted to, I was a diagnosed as having a PKD, which is polycystic kidney disease, which is hereditary. My nephrologist, he said that “Well, it appears to me, it looks like you got a slow progressing disease,” because my EGFR back then was around 48. You know, you start getting down around that area.

Host:  How soon after that did you start thinking maybe the solution would be to have a transplant?

Mike: Well, I knew I was going to need a transplant, but when? That’s the problem I had, because it was slow (progression). It went on long enough as far as decreasing kidney functions for years since the beginning of 2008. I kept progressively getting worse and I couldn’t really do anything until my EGFR or anything like that hit around 15, as far as being eligible to get on the transplant list. In 2019, I was able to get on the list because my blood work has gotten so poor at that time. And at that point, I was seeing a nephrologist monthly, when I was having blood draws done monthly, they were changing my drugs every month. That’s when I really started looking at finding a kidney donor, because I couldn’t do much until I was actually on a list.

Of course, they asked you all these questions, you know about your health and who passed away. And you know, the honest question they asked, “Well, did your father pass away from an aneurysm?” I said, “No, he passed away from kidney disease.” And they said, “Well, we’re going to have to run all these tests on you.” So, they did all sorts of stuff, and you know, they did CAT scans in my head and everything like that. And they said, well it appears you have a small aneurysm that we’re going to have to repair. And so, okay, 2019 was a tough year for me because besides that, I also had two abdominal surgeries for small bowel obstruction, then developing hernia through this large incision in my abdomen. So, I had those surgeries in there, and then they did aneurysm surgery on me. And of course, from my aneurysm surgery, I developed blood clots. I had two subdural hematomas, and so I had to go in and they had to do bur holes on the left side and the right side. So, they drill into your head, and, of course, you’re awake for this. Well, needless to say, I was taken back off the list as far as transplants.

Host:  Because of all the other stuff that was going on.

Mike: Yes. They go, you’ve got too many health problems. They said, let’s see where you’re at. So, about six months went by, they said, you’re not going to lose a place in line. Of course, that line for me was at least six years; that’s what they told me. Finally, I was able to get put back on the list after I recovered. At that time, I was dealing with so many other surgeries, I wasn’t even thinking about kidneys, so that’s when I started inquiring. I was looking hard, at least starting a year before I actually got a transplant. When I did get the Big Ask Big Give, because I was calling a lot of people, I got a hold of them. I looked at some of their webinars. I talked with kidney donors and people that received some because I was able to get some names of some people. When I looked at the Big Ask Big Give, all their stuff in there, they had a list of here’s everything you should do.

Host: So, National Kidney Foundation runs Big Ask Big Give, and they had a list of people that had already gone through the process, recipients of a living donor transplant, and you were able to talk to some of those people.

Mike: Probably the two people, the donor and the recipient. And of course, they gave me references, even to books and other things, so they were helpful. Also, on the Big Ask, one of the webinars, here’s all the things you should be looking at and doing all these things. Well, I’m not very media savvy, let’s put it that way. I don’t do really any social things on the internet. I look at things, but I don’t type in, you know, I usually leave my opinion out of everything. So, I’m ignorant when it came to that stuff because I’m an old guy.

Host: And you don’t want to be a disadvantage because you’re not used to using Facebook every day.

Mike: Yes, that’s correct.

Host: And I think honestly, you know women have an advantage because there are more women on Facebook than men generally, so you’ve got to compensate for that somehow.

Mike: They said find somebody to be your champion; that was one of the things. And my daughter-in-law, she volunteered for this project. And she was probably the most helpful one of all because she put the word out, you know, everything and you know, she started, of course she had her phone number down on that, and so she received all these calls, and she was kind of surprised how many calls she did get.

Host: So, did she use social media on your behalf?

Mike: Yes, that’s correct. I go, I don’t know what do I do here? You know, I look around because I’ve never really done it because I’m not that type of person.

Host: Was that suggested to you as part of Big Ask Big Give that you find a champion, that’s something that they coached you to do, I guess.

Mike: Yes, so that was it. There were probably some other things in there that they suggested. I go, that’s kind of not my personality. I can’t remember what they were right now, but I go, well, I’d find it awkward. I’d really be awkward asking this way.

Host: Did you ever at any time say to yourself, I couldn’t possibly ask somebody else to give me a kidney, it’s too much?

Mike: Well, that’s probably why I didn’t even bring up to anybody that I had kidney problems when I first found out, you know, I didn’t tell anybody. Of course, my wife knew, and it wasn’t until five or six years later that I started telling some people that I do have kidney problems and kidney failure. But it didn’t become well known to other people besides close friends, until I got my champion involved where she just threw it out to everybody, and it was very helpful. One of the things, she had the stickers made, you know, the put in your car type stickers. And so, that’s where she received a lot of her phone calls from just those things being in cars. She was surprised how many calls she got?

Host: Is that something that is suggested by the program or was that her idea?

Mike: That’s pretty common because you can drive around here and see kidney wanted stickers now and then on cars. And so, we had them on ours, you know, it was very helpful that she was doing all this work for me because she ended up having the things put together, ordered them and then she started handing them out to people. Gave me a big stack and okay, see who you can get to put these on there. And so, that’s kind of where we were at that point. Of course, at that point I was still seeing my nephrologist and taking a lot of drugs to keep off of dialysis. What happened to me was a miracle. It was, because you look at their kidney transplant for people my age is very low, because when I got my kidney transplant, I was 69. And with this long wait for anything, I told myself that I’m going to be waiting six years or basically at that time at least four years. And I go, well, once you get on dialysis, the longer you’re on dialysis, the less chance you have of a successful kidney transplant. And so, I was able to get my kidney transplant, not being on dialysis, and I got a live kidney from a very, very healthy person.

We were invited over to my nieces, and that’s my niece on my wife’s side. And her name’s Andrea. So, we were invited over there for a pizza dinner or something, you know. We’re sitting down to eat, and my wife sits down, and she goes, “Hey, Andrea, would you mind putting up a sticker for Uncle Mike on your car,” the kidney wanted stickers, please call whatever. I can’t even remember what it said now. And she goes, “Oh, Aunt Sue.” And just for that split second, I said, “Wait, you won’t put a sticker on for me?” You know how that crosses your mind so quickly? And her next words that came out of her mouth was, “I’m approved as a donor for Uncle Mike.” And we all sat back, we go, what? And it just came out of the blue. We had no idea. She went through all these tests because she didn’t want to let anybody know she was doing anything in case she couldn’t help. She kept it completely to herself. And of course, needless say the tears were flowing at the table and it was, you know, we go, whoa, this. You know, I looked around and I got goosebumps. I go, how did this happen? Because I’ll be honest with you; I didn’t think it was going to happen. I think I was just going through the motions because, you know, who’s going to give up their kidney? 

That’s kind of what it boils down to. And I was really surprised that it came out of nowhere. It really did. Somebody just felt like they should give a kidney. And it was a miracle and she’s a great person. She’s actually very active. She even went to college off of a basketball scholarship, and she’s a real athlete, so I got a great kidney. All the stars lined up for me; they did, so it was amazing.

Host: That’s wonderful. So, presumably something that your champion had done, putting things out on social media and your story got told a few times within your kind of family network, she heard it and then she took it upon herself to get checked out, to make sure. So, she was very thoughtful about it as well. She didn’t want to tell you unless she really could. You hear donor stories, and a lot of times the donor says, I wish you’d asked me sooner. Why didn’t you ask me sooner? So, there is that kind of like people really want to do this and want to help, and maybe have some fear about the procedure or have some fear about this is going to be expensive. Will I be able to get health insurance after? And it seems that there’s been so many things that have happened in the last few years that have made all of those things much easier.

Mike: Yes, it was basically from the time I got put on the donor’s list to the time I had my actual transplant was two years, which I thought would never happen. I just thought you put the word out, and it happened. And like I said, it came out of the blue. So, if you’re a person looking for a kidney, just keep trying, you know, that’s all I can say. Keep trying because you never know where a kidney may come from.

Host: What is one key thing about the Big Ask Big Give program that changed things for you?

Mike: Well, it changed my approach because you know, first of all, I didn’t know how to ask people; that’s it. You know, how do you ask somebody? How do you put the word out that you need a kidney? And nobody, you know, and I didn’t even want to ask anybody because I didn’t want to let them know I had kidney problems. I was caught in a circle, and so this was very helpful, you know, giving them, and actually by reading and looking on this and talking to people with the Kidney Foundation, it showed that you got to be a little more, you’ve got to be more aggressive. I hate to say that, but that’s what it boils down to. You got to be more aggressive, and you can’t be timid. You got to let people know you need a kidney. And that’s probably what it amounted to, is me getting over my hesitancy regarding doing that because I have a hard time asking, well, can you give me your kidney?

Host: And also, maybe trusting that people want to and are prepared to do far more than you might have realized.

Mike: My champion, she ended up got a lot of calls and she gave them the phone numbers and the information, and she text them back stuff like from the hospital. Because they have some literature, and she may have got some stuff from the Kidney Foundation. I can’t remember everything she was handing on her end. She was able to do the begging for me. That’s kind of what it amounts to. If I didn’t need one, I could probably do that very easy, but I’m asking for myself and that’s where I had the difficulty.

Host: So, if Andrea was here, what would you say to her?

Mike: Oh, well I could, you know, she knows, I don’t know. You’re getting me teary-eyed. I don’t know. I can’t even respond on how to answer what I could say to my donor because she gave me the gift of life; that’s what it boiled down to and I didn’t think it was possible. So, I’d say you got me. I didn’t bring any Kleenex in here, that’s a problem.

Host: Oh goodness. It’s very hard via Zoom, I can’t hand you mine.

Mike: It’s amazing, so all I can do right now is support her. My donor has become a real advocate. She joined a group called the Kidney Donor Athletes. They’re kind of a group that ends up trying to show people that give kidneys you can still live a normal life. They’re doing everything they can. And right now, she’s with that group and they’re in Africa right now. They’re going to be climbing Mount Kilimanjaro. They’re hoping to be up there on the 10th, on the summit, on the 10th, and I think that’s called World Kidney Day.

Host: Anything else that you would share in terms of encouraging someone who’s thinking about asking for a living donor or being a living donor?

Mike: Well, like I said, it’s an uncomfortable ask. It is. Try and find somebody you’re comfortable with that can handle these questions, that can, you know, like I said, be your champion. That’s probably the biggest thing I needed personally as it was too awkward for me to ask. But if you get a third person involved, it’s easy for them, you know? And so, that’s probably the biggest thing is, get a champion, because I’m assured, the majority, of people are probably like me. Well, I can’t go ask somebody something like this, but find somebody else that can on your behalf, and then, all of a sudden, the conversations start flowing, at that point.

Host: And we are so grateful to Mike for sharing his experiences with us all, and to the National Kidney Foundation for introducing us to Mike. Now you’ve heard a little about Andrea already, so let’s meet the person that changed her Uncle Mike’s life in an amazing way and learn about how that action changed her life in some quite unexpected ways too. 

So, I’m so happy to welcome to Kidney Transplant Conversations, Andrea Coleman. How are you, Andrea? It’s great to see you.

Andrea: I’m doing great, Rolf. How about you? It’s good to see you too.

Host: Not too bad. Thanks. And tell us a little bit about yourself.

Andrea: I was born and raised in Denver, Colorado, and still live there today. I’ve been an athlete my entire life playing sports through college, love hiking and being within the Colorado life as much as I can. And I donated my kidney to my uncle in December of 2020, right in the middle of COVID, which was a fun experience.

Host: What an amazing thing to do.

Andrea: He’s a wonderful guy.

Host: He sent us a link to a news story, and you were up on Mount Kilimanjaro. What were you doing up on Mount Kilimanjaro so soon after having surgery and giving one of your kidneys away?

Andrea: Yes, it was definitely something I never thought I would do in my life, but I was up there with 21 other kidney donors. We’re all part of a group called Kidney Donor Athletes. And the point of the group is really to raise awareness around living donation and help talk to people who are thinking about it, and coach them through what that’s like. And then, to help live as an example, that you can donate your kidney to someone and help them out, but then still be able to do all the things that you want to do in your life. Or maybe for me, like Kilimanjaro is something I never thought I would even do. And so, that was really what we were doing up there, you know, to just raise awareness about this. We wanted to do something really, really big and thought climbing one of the tallest mountains in the world was a really good way of doing that.

Host: What a fantastic experience; that must have been so exciting.

Andrea: It was the best time of my life by far. It was just such an incredible experience and beautiful. And to share it with that group of people that we all had, maybe we don’t have a lot in common all the time in the rest of our life, but we all shared this really unique experience of being living donors. And so, it was just really neat to get, to spend that time.

Host: Yes. I mean, what was that like to be actually with a group where everyone has actually made that organ donation?

Andrea: You know, I have, to be honest. I was really humbled by it because a lot of the people who were on the trip were altruistic donors, so they didn’t even know who they were donating their kidney to. And some of them led to chains. I think we did the math on it and over 40 kidneys were donated because of the 22 people that were up there, because they started some chains or things like that. And so, I was just so happy that I was able to do this for my Uncle Mike, but I was also really humbled that people who would just kind of go and do it out of the goodness of their hearts to try to help someone. And so, getting to sort of be around them and hear their stories about why they did it and how passionate they were about kidney donation and about being advocates for it, I’m probably going to say it was a wonderful experience about a million times, but it was. And just to be surrounded by that many people with that sort of story, it was really incredible.

Host: And everybody that I’ve spoken to that has been a donor, it’s obviously a life changing experience, but you know, sometimes in ways that you don’t expect.

Andrea: I could not agree more. I kind of thought I would do this, you know, I would have little cut on my stomach for the rest of my life and that would be what it was, but it has brought this richness and value to my life that I never thought I would. I’ve met a lot of new friends and great and wonderful people across the country because of it. But just being so thankful for my body and for science and for the fact that I was given the opportunity to do this, it’s really changed my life and my outlook on it, and just appreciative for everything.

Host: And the sense of possibility that comes with that, it seems to be that possibility to really change something is quite tangible.

Andrea: It is. I think so often, and this has been kind of a search in my life. I try to volunteer a lot and do a lot of things to try to help the community around me. But having something so tangible, to be able to see my Uncle Mike and kind of know the pain that he was in leading up to the surgery; he fought so hard and continued to do as much as he could. But I know how tired he was and how hard it was, and to see the immediate change in his life, that is, I can’t even really describe what that feels like to be able to know that I played a part in that and how grateful I feel that I got to do that.

Host: So, let’s dial back time a little bit. And let’s go back to can you remember when you first became aware that your uncle was unwell?

Andrea: So, you know, I’ve known for a long time, but I didn’t know really the extent of it. And it’s just because he wasn’t incredibly vocal about what was going on. And so, I kind of knew, and throughout my life we’ve been over to his house for barbecues and his son is like a good friend of mine. And so, we were just kids living life, never really knowing what’s going on with our parents. And it wasn’t until more recently, you know, the last probably five to seven years that I started learning a little bit more about what he was going through and what was kind of happening with him. And so, I was more aware of it, but to be truthful with you, I didn’t know very much about living donation. I didn’t even know it was a thing. I always marked the thing on my driver’s license that sure, you know, you could take all my stuff if something happens. I didn’t know anything about the fact that I could do something living about it. I knew he was struggling with something; I just didn’t know exactly what and for how long and how much and all of the things that he had been doing for years to try to live with it the best that he could.

Host: Do you remember what it was that put you on that track to actually thinking, well, actually I could help.

Andrea: Yes. So, we were over, my husband and I and a couple other family members were over at his house for, I think it was some sort of holiday gathering or something like we did. And we just got to chatting and he had one of the little brochures from the hospital about organ donation. He was kind of talking to me a little bit about it, just what it was. I was asking some questions, and so that was the first time I kind of heard about it. I took the pamphlet home, and it was always just sort of sitting on my desk. And I feel that it was just kind of like an ignorance thing about just not really being aware of how much he was sort of struggling and what was going on. It just didn’t occur to me. So, sort of sitting there and then, you know, all of that sort of when COVID was really starting. And so, we were all sitting at home all day not being able to go anywhere, and I pulled this pamphlet out again. And I was like, oh my gosh, I need to just call and see what happens, and that was kind of how it started. I wish there was this big light bulb moment about it, but it wasn’t, it was just kind of, you know, he gave me the information and then I called, and the process got going.

Host: Yes. I mean, I guess that doesn’t have to be a light bulb moment. It’s kind of like an evolution in your thinking and you made a call, so who did you call?

Andrea: So, I did my donation through the University of Colorado health system. And so, it was just UC Health in Denver, at the Anschutz Campus, and just called them and just kind of went through their procedures.

Host: So, you called them direct, you didn’t call Uncle Mike?

Andrea: Right. I wanted to go through the whole process, but I was really afraid that if I went through it all, and then I wasn’t a match, or they turned it down, I didn’t want to disappoint him or get anybody’s hopes up and then it didn’t work out. I was just really nervous of letting him down. I kept it to myself, and my husband was the only person that knew I was going through all of the testing and stuff just for that reason.

Host: And do you know if that’s fairly common that people will come and get an assessment without because it’s kind of low key, isn’t it? It’s like, well, I can get an assessment, I can see, and I’m still kind of like, we’re still in like, decision-making mode.

Andrea: Yes. I don’t know how common it is, but a lot of the people that I’ve talked to were much more like, hey, I’m doing this and much more open about it. I just was a little bit more low key.

Host: Yes, whatever works.

Andrea: It is. You know, everybody’s different. I’m a little bit more of a private kind of introverted person, and so that’s just how I like to live my life anyways.

Host: And I think this is kind of like, you know, what’s so hard to appreciate when you’re coming into this whole environment for the first time, because you don’t know what you don’t know, and you don’t know how these things work, so the kind of journey or the educational journey that you go on is pretty comprehensive.

Andrea: It really is. And there just wasn’t a lot, you know, I could sort of try to Google some stories and Google as much information as I could and talk to my coordinator, and everything like that was really great. But there is, to me, it feels like a lack of knowledge and just common discussion and discourse around this, and kind of normalizing it, making it like this is a thing that a lot of people do, and you can do. It still seems very much kind of under the radar, and that’s how it was for me. And so, just going about the whole process, I was just cautious because there wasn’t enough, to me, it felt like information around just making it kind of like a typical thing.

Host: Right. And I mean, I hope that this podcast can help with that aspect of this whole process because the more people can share their story, then the more prospective donors can just get an impression of what it’s like, because everything’s kind of so new and different.

Andrea: I couldn’t agree more, and I agree with you. I think that this is such a great resource because for me, I was just thirsty for as much information as I could get on it. And especially hearing what other people went through and some of the emotions around it that were sometimes just more challenging, and just knowing that that’s okay, and making people feel comfortable with the range of things that you go through; that was the sort of information I was really hungry for.

Host: And you must have to really think, you know, very carefully about the possible risk that you’re taking on because there is a risk.

Andrea: For sure. And it was something my husband and I talked about a lot, and I talked about it with the team at the hospital. They said, you know, you don’t have to do this. And doctors never want to cut someone open that they don’t have to, and you have to be aware of that. And just besides that part, I am very active, and so I was very concerned if, you know, can I still climb fourteeners? Can I still run marathons? Will I still be able to do all of these things that I like to do in my life? And there just, wasn’t a lot out there that told me, or examples that showed that you could do all of those things. And so, you’re right; like weighing those risks, you know, it’s something hard to do on your own with a computer when you’re stuck in your house for a year.

Host: Yes, it’s a lot to process, but you did do it, and even did it during COVID, right?

Andrea: That’s correct, yes.

Host: Wow. That’s a lot of excitement going on.

Andrea: It was. It wasn’t how I was expecting to spend the pandemic, but sure glad I did.

Host: Yes. And then afterwards, what can you remember about after the procedure, and then you must have spent a little bit of time with Uncle Mike afterwards. What did that feel like?

Andrea: Yes, so our rooms at the hospital were just a couple of doors down, and so the afternoon of our surgery, I actually hobbled myself over to say hello to him and chat. And he looked great. And then later that evening, he came cruising by even that same day. He was, I think, allegedly moving much faster than I was after that. But, you know, my recovery, thankfully was easy. I just started walking a mile or two a couple of days after, and then I started running again a month after. So, I felt really, great right away, you know, there was some of the soreness and stuff, and that lasted for a little while, but I think continuing to move helped me heal a little bit faster. But then it was also really motivating to see my Uncle Mike, we had a big snowstorm like a month or so after our surgery in Colorado and he was out shoveling like this, you know, inches and inches of snow. And so, just seeing him and hearing my aunt, his wife, talk about how he was eating and much better at like just moving around and had so much more energy; that part helped me kind of move through my recovery as well, because it was so motivating to see him doing so well.

Host: And it’s just so inspirational to hear you talking about the whole thing like this. It was how long ago now?

Andrea: I donated December 2nd, 2020.

Host: So, it’s nearly two years, but within two years, you’re climbing Mount Kilimanjaro.

Andrea: Yes. And actually, I ran a marathon on the year anniversary donation, and then climbed Kilimanjaro about two, three months after that.

Host: Well, I am just amazed and humbled to hear your story. It’s just such a pleasure to see your enthusiasm and kind of the brightness of your spirit coming over, talking about it.

Andrea: Well, thank you. And I appreciate you letting me chat about it because it has been just one of the best things that I’ve ever done in my life. I’m just so grateful for the doctors and for science and for all the support that I was able to find, and just that I was so blessed to be able to give this gift. And knowing what I know now, I like to think that even if I didn’t know somebody who needed one, that I would still donate, you know, that I would do anything that I could, because it’s really amazing to see how you can make an impact in somebody else’s life. But the gifts that it’s given me for donating that, it’s just been something I never, ever would’ve thought I would’ve done in my life.

Host: Have you had the chance to talk to other potential donors?

Andrea: Here and there. Part of the Kidney Donor Athlete, part of what we try to do is chat with folks, so they try to match us up with people who have similar maybe athletic backgrounds or live in the same state or do things like that to try to match us up to talk to some donors. So, I’ve chatted with a few people here and there. And then I have other friends who are a part of different groups through Kidney Foundation and things like that, that also try to mentor and talk to potential donors.

Host: So, that’s all part of the process?

Andrea: Yes, exactly.

Host: And you don’t mind talking about it?

Andrea: Not at all. Again, I mentioned earlier that I’m a little bit of an introvert and I don’t like to be very, “here I am” about anything, but if anybody says anything or I get the opportunity to kind of just discuss that this is something you can do, you can think about it; it’s a really rich thing that you can do in your life. If I get that chance, it’s one of the things I’m not afraid to be a little bit more gregarious about and out there.

Host: Fantastic. Well, look, thanks so much for joining us on Kidney Transplant Conversations. It’s been real pleasure to chat with you about your story, and thanks for sharing.

Andrea: Yes. Thank you, Rolf. I really appreciate you giving me the opportunity and thanks for all that you’re doing to help raise awareness and hopefully bring people to the cause.

Host: Well, many, many thanks to Andrea Mike for sharing their stories on this episode of Kidney Transplant Conversations. And thank you, our listeners for joining us today. Andrea tells me that her organization, Kidney Donor Athletes is really interested in hearing from new members who’d like to join and participate. A link is in the podcast description or Google Kidney Donor Athletes. Thank you again to our Kidney Transplant Conversations underwriter, Veloxis Pharmaceuticals, Inc. All views and opinions expressed in the podcast reflect those of the participants and the information shared in the podcast should not be considered medical advice in any way.

On our next episode, we’ll be hearing from the National Living Donor Assistance Center, and also talking with Risa Simon about the Donor Seeker program. Until then, be safe, be well, and thanks for listening. 

Copyright Project Advocacy, 2022.