Donor Diaries
Donor Diaries is a podcast about the beauty and messiness of living organ donation. Get ready for some amazing stories about what happens when people decide to share their organs with other people, when people chose to share life. The sharing of kidneys and other organs is an incredibly fascinating topic that teaches a lot about kindness, love, and life! There are over 100,000 people on the kidney transplant waitlist today, and sadly about 13 people die each day waiting for a kidney that they never receive. One in three Americans are at risk for developing chronic kidney disease and one in nine already have kidney disease. Most don’t even know it. Donor Diaries shares unfiltered stories of kidney donation through the voices of living donors and straight talk from transplant experts who are committed to bringing the conversation of living organ donation to the forefront of society, so patients no longer have to die or suffer while waiting for a transplant.
Donor Diaries
A Senior Donor’s Unwavering Generosity | EP 27
How old is too old to save a life? At the age of 74, Tom Duncan defied societal norms to become America's oldest non-directed living kidney donor, and his story will change the way you think about aging and altruism. Join us for an intimate conversation from his serene home in Ruidoso, New Mexico, where Tom recounts the journey that began with a friend's struggle with dialysis and led him to a life-altering decision. Discover the rigorous evaluation process, the misconceptions about age limits, and the emotional benefits of donation that go far beyond the physical act.
Tom's inspiring narrative challenges preconceived notions and societal perceptions. We also delve into the Living Kidney Donor Voucher Program, which enables donors to give the gift of life while providing future security for their loved ones. Despite his loved one receiving a kidney from another source, Tom's unwavering commitment to donation shines through. This episode is a heartfelt tribute to the power of giving at any age! Don't miss this chance to be inspired by stories of love, resilience, and selfless generosity. This episode is dedicated to Ernie and David.
Connect with Laurie Lee
GiftWorks
Welcome to Donor Diaries, a podcast that explores how people are changing lives through the powerful act of living donation. Tune in to discover how kindness, love and simple acts of giving are transforming lives every day. Welcome back, I'm your host, lori Lee, and this is the kickoff to Season 3 of Donor Diaries. Get ready for another exciting season featuring interviews with living donors, transplant recipients and experts who share powerful stories and discuss latest innovations in the transplant world.
Speaker 1:You know there's a few things they say maybe you shouldn't do after you turn 70, like switch from an Apple iPhone to an Android or clean your own gutters. But donating a kidney, it turns out. While it's not all too common to donate after you turn 70, it's totally doable for some healthy seniors. Transplant centers have varying age limits for donors, typically between the ages of 18 and 69, though some will adjust their upper age limit for a healthy senior donor. The key is to let the transplant center make that decision. Don't count yourself out before they do. In 2019, an 84-year-old man from Texas became the oldest living kidney donor in the US when he donated to his 72-year-old neighbor. You never know unless you try. Today we're chatting with my friend, tom Duncan, who, well into his 70s, decided to donate a kidney. We'll dive into what motivated him, discuss his experience with the evaluation and donation process, and celebrate how people of all ages are stepping up to make a difference. First of all, welcome to Donor Diaries, tom, I'm happy to have you as a guest today.
Speaker 2:Great to be here.
Speaker 1:So tell us a little bit about yourself. You look like you're in beautiful New Mexico right now.
Speaker 2:I'm in the southeastern New Mexico. The best locator is simply, if you can picture, about 120 miles north, straight north of El Paso, Texas. That's a little town called Riodosa, New Mexico. It's very dry, very dry, and it's just a pleasant little town of 8,500, and we've certainly come to love it quite quickly of $8,500, and we've certainly come to love it quite quickly. Retired my wife and, as I say, our children don't have tails.
Speaker 1:They're two rescues and they might join the podcast a little later. So, tom, the reason you and I originally connected is we were in an Ask Me Anything call together and you and I were put in the same room, and what made you interesting to me is that you are somebody who donated a little bit later in life. So can I just get personal with you and ask you how old you are and what your birthday is?
Speaker 2:Oh, absolutely, absolutely. I'm 75 years old, my birthday is September 16th, 1948. And I've been identified as the oldest non-directed living donor in America. And I want to add this I've just received a call from someone that's 75 years old that's contemplating a kidney donation, and I want to give them the belt, so it'd be great if they proceed.
Speaker 1:Well, nobody wants to be called old, but that's a pretty neat title to hold.
Speaker 2:It was something that was mentioned to me. About two months after donation I went oh really, well, how nice, but it's been really good from this standpoint. There's so many misconceptions about kidney donation. I mean, it's just hard to fathom, and it's nice to be able to share my experience and that has also given some hope to people in their 50s that have family or friends that are in need of a kidney and they've been afraid to proceed because they thought they were too old.
Speaker 1:Yeah, I know they rule themselves out sometimes when maybe they wouldn't be ruled out if they stepped forward were too old. Yeah, I know they rule themselves out sometimes when maybe they wouldn't be ruled out if they stepped forward to be tested. So how old were you when you donated?
Speaker 2:74.
Speaker 1:Okay, and so there's a 75-year-old that might take the throne.
Speaker 2:Let's hope so.
Speaker 1:Let's hope so. What made you want to donate? How did kidney donation even come onto your radar? I absolutely knew nothing about.
Speaker 2:How did kidney donation even come onto your radar? I absolutely knew nothing about kidneys or kidney donation and a good friend not a bestie, but a good friend was on dialysis, also knew nothing about dialysis, and that's where I learned about the horrors of dialysis. He would come home from a session. He was too weak to talk on the phone and I thought that was some magic elixir that you just kind of got plugged in and cleaned out and then you went and played golf and so he was on dialysis for 17 or 18 months and it stopped working, which is he was 67, 68 at the time. And again I thought that was just a permanent inconvenience that you dealt with in kidney failure and so he became very ill. And if this was the other thing about dialysis, it's just it's always something. There's some infection, they're doing blood work every week and potassium's too high, magnesium's too low. It's not just the act of the dialysis. It stopped working and going to need a kidney. So he asked. He said, would you see if you qualify? Well, I thought, oh my gosh, this is like a heart transplant or something. I said all you got to do is just see if you qualify. It starts with a about a 45 minute extremely thorough medical history questionnaire on the internet, and so I did that and I got a pretty quick call to invited to continue.
Speaker 2:My wife got a pretty quick rejection and so at this point we're in Wyoming, we had a cabin there, we're in the process of moving to New Mexico. And I got the call. I said essentially, they said you have four to six weeks to live, and so I'm just unavailable. I can't be available because to start the testing which takes about on a fast track, maybe three days I'm not available for two months. Only 14 people came forward to see if they would qualify. Only two of us were passed on. This other person actually even had the same blood type, which was a B blood type, and so my friend Ernie got a kidney July 27th of 2022.
Speaker 2:But I got to tell you there was a certain degree of relief in me Okay, I don't have to do this, I'm serious. So the phone rang 10 days after Ernie got his kidney and it was a transplant center in Austin and they said your recipient received a kidney. I said I know that. They said would you consider moving forward as a donor? I went let me think about this. Here was the thought process. Why did I do it in the first place? And it's really simple. It's not very complicated. My friend absolutely had no hope. None, 68, now he's 69 years old. That was the reason that I had made that decision in the first place.
Speaker 1:So I called him back and said yeah, let's talk to my wife and my children, and I called him back and said, yeah, let's go move ahead.
Speaker 2:So that started what I like to call the $20,000 free physical.
Speaker 1:And I thought you just had dogs. So did you have to consult with the dogs, or do you have children as well?
Speaker 2:They love me no matter what. So, but thank you for mentioning that, because that became an issue later on. So that started the testing, and it started with the blood work, the chest x-rays, the kidney function test non-invasive, I guess you'd call it. So then the team had to evaluate each of those tests and whatnot, and then it brought in the other people the donor surgeon, the recipient surgeon, dietician, patient advocate I'm leaving a couple out financial assistants. There's about nine or 10 people on the team that vote and each of them has the ability to stop the process. So that's what led me to the point of leading up to surgery day and what you know.
Speaker 2:I should need to point this out, but this is really important. They made two things very, very clear. Number one the recipient's sick. We're not going to do anything to jeopardize your health or safety, and they meant it. I mean that was clear throughout the whole process, and the other part of the process was, at any time, if I changed my mind, all I have to do is say I don't wish to continue and there's not going to be any. Well, you know, matter of fact, every conversation started with are you sure you want to continue? There was zero pressure and you know I felt protected the whole time. There was really no fear as the process unfolded, but the only fear was what's next? You know, because obviously you never get a chance to do this twice.
Speaker 1:Can we back up a little bit to the decision you made to continue through testing, even though your loved one got a kidney? You kind of felt a sense of relief that he got a kidney. Had you at any point considered that if he got a kidney from a different source, that you would continue forward to help somebody different?
Speaker 2:No, not for one minute. No, I thought the process was over, because the process was over until the phone rang, and so that was what brought up the conversation with my wife, my two daughters and I mentioned it to a couple of people, and their action was not very positive. It was like why would you do that? Well, that went into the. I witnessed the suffering that my friend went through, and there's more of the story. I should tell you this about this fellow, ernie.
Speaker 2:Ernie was always someone that was helping someone else, always, and you'd ask Ernie, say hey, ernie, what have you been up to? Oh, nothing much, you know, just busy. Then you'd talk to someone else and they'd say, so, yeah, I just talked to Ernie and they'd say, well, he's taking groceries to some person, or he's taking someone to a doctor's appointment, or he's cutting someone's grass. He never talked about what he was doing. It was the hey, look at me, stuff. And so that had a. How does that translate into telling someone about? Well, here's why I'm doing it, because of this person's commitment to others and the suffering that I watched him go through. So that was that's why I stopped really even discussing it, even mentioning it to anyone else. The the decision process.
Speaker 1:So you got inspired. Is what happened.
Speaker 2:Yeah, that's, that's it, quietly, inspired.
Speaker 1:It's interesting because this does happen from time to time where somebody steps forward to help someone they love and then they end up helping somebody else. But I think a lot of people feel that that you described and you know it takes a different type of person to say I want to do it anyway, I want to help somebody else.
Speaker 2:I think we're led to this, and that's all I'm going to say about that.
Speaker 1:Some wise words. Many older people get ruled out for one reason or another. Tell us a little bit about your life. Have you had a healthy life? Is there anything that made you an exceptional candidate? Like you, are powered by green juice and complete Ironmans.
Speaker 2:Oh God, no, I smoked for 20 years. I mean, is there anything dumber than that? And quit in 1991. Fortunately I dodged that bullet. No, actually my exercise regimen started at the age of 50. I had a friend that was a walker. I said, oh, that sounds like something I could do. I tried running at one time and that didn't work for me.
Speaker 2:I didn't like that at all, and so I lived in an interesting neighborhood in Salt Lake City called the Avenues it's the oldest neighborhood and so I had a little walking course about two and a half miles and I could just walk out my front door and I would be in these beautiful old homes and that was what started my exercise routine. And I would be in these beautiful old homes and that was what started my exercise routine. I liked it, and so then I found out, hey, there's some mental benefits. You know, the mind kind of stops. And so I've said, yeah, I'm really liking this, so I'd be on the route for six or seven days a week, and that's really what started it.
Speaker 2:I've never been to a health food bar Not that there's anything wrong with that but I was not the historically correct candidate. You know, you start to get exercise and you start to eat a little healthier and somehow healthy people come into your life and so that kind of vibe starts to happen. But no, I guess probably the short version of this is I inherited wonderful genes from my parents. The stupidity of younger years was overcome by great genetics, and then, as I've come, I started swimming about 10 years ago, and so if there's a pool I'm going to be swimming in it. So the health thing kind of grows on itself, and so that's really the basis of how come a 74-year-old man can qualify to donate a kidney.
Speaker 1:So what was your evaluation like? Was there anything different about it related to your age? Did they handle you with gentle care?
Speaker 2:No, no, I think there was some elbowing, like that guy over there, he's thinking about donating a kidney. But no, no, it was just straightforward. I mean, it was a process of which there were steps to go through. Matter of fact, I was the one that, as these interviews went through with the different people in the transplant team, I was the one that brought up my age. I said you know, sure, this is a good idea. And here's I think you probably experienced this too. Different centers have different cutoffs. Some centers have a 70-year cutoff, Some have a 75. Some say it's totally dependent upon the test as far as your qualification. Some say it's totally dependent upon the test as far as your qualification. So I was just another bozo on the bus as far as going through the testing.
Speaker 1:Did they make you aware of any additional risks that would apply to seniors only?
Speaker 2:No, I had two risks One I brought with me and one I was introduced to. They said kidney donors can experience hernia. I mentioned that to donor surgeons. Don't worry about it. I said I've never had it happen. I said okay, and the other part was that you know. I thought, well, you know what about for someone my age? What about a stroke? I wasn't worried about death. I mean, I mentioned that, statistically, kidney donation is safer than childbirth. But I was wondering about you know what about a stroke? Your cardiovascular system is probably equal to that of a 50-year-old, so you have no concerns there. So let's rock on.
Speaker 1:And what about your recovery? Do you feel like you had a different type of recovery compared to other donors you've spoken to, based on your age?
Speaker 2:I did. I did. It was much easier and quicker. It's amazing, the people I've talked to no, I'm serious. Two weeks after surgery I could have gone back to work Light duty, no lifting, half days. Four weeks I could have clearly gone back to work full time. And six weeks after surgery I'm swimming every day and people talk about and everyone's different. Let's face that, and I wasn't trying to be, you know, mr Wonder man or anything like that. I was just the first 10 days after surgery I watched all 63 episodes of Downton Abbey which, by the way, you need to do if you haven't and if anything, I hope every recovery is like mine.
Speaker 1:Yeah, your son's significantly easier than mine, and I donated when I was 36.
Speaker 2:Oh yeah, you know what it's the old story Time takes time. My time might be different in yours, but so it's just roll with it.
Speaker 1:That's amazing. I'm glad you had such an easy recovery. What did your generation of friends and family think about you doing this at your age?
Speaker 2:Think I'm crazy. No, no, here's what happens. I'll mention this to someone and they will physically kind of like start inching back, like I hope you're not planning on asking me to do this. Here's a good example. My wife is an RN. She's been a nurse for 45 years. She knew absolutely nothing about kidneys nothing. She was never in an area where that was even associated in some way, shape or form. This is what society is like today. It just is. And what I tell people is this slow down, stop. Take the 45-minute medical questionnaire, just relax and see if you qualify. No one's going to push you. No one's going to prod you. No one's going to push you. No one's going to prod you. No one's going to. You know, shame you or anything like this about gee, there's so many people on the waiting list. See if you qualify and then you can decide if and when you want to go move forward.
Speaker 1:And don't rule yourself. That's what I would say to these older folks is oh, I just assume that I'm not qualified because of X, y or Z, but it's pretty incredible how the body can recover at any age if you're an overall healthy person.
Speaker 2:Absolutely, and the well. Here's the perfect example is my own home, my wife. She was immediately rejected. They said thank you so much. We're grateful for you taking the time to see if you would qualify, but I think in her case she'd had one too many surgeries or something, so don't worry.
Speaker 1:What's the biggest benefit you've felt by donating a kidney?
Speaker 2:I don't think they've invented words yet. I don't. I've heard it described as one of our mutual friends that it's a waterfall of joy. I get very sensitive. Matter of fact, at first I didn't tell anyone. I was very regarded, who I told about donating a kidney because they started this hero business and I just lightened up. I did something out of the ordinary that had a very extraordinary outcome for for not only one person but but in my own case, 17 other people, the family members, and so that's the best I can come up with. It's just this internal joy that I don't need to advertise. Well, I can't. I still haven't found the words. So sorry, that's not a very good answer, but it's the best I can come up with.
Speaker 1:You had a special opportunity to meet your recipient.
Speaker 2:Do you want to share a little bit about how that came about? I should have some Kleenex. This was a non-directed donation and either side has the option to keep it totally anonymous. And some people do and some people don't, and it's that simple. And so I did. And so here's the way that works. Is you pass a note to the coordinator If you'd like to talk, if you'd like to have coffee, I'm willing. Here's my phone number.
Speaker 2:My prayers in this were all started with. To whom it may concern, I didn't know if it was a man or woman in Chicago or California or anywhere in the United States. I mean, didn't know their age or anything. That's the way it should be. It's very, very confidential. I didn't hear anything confidential. I didn't hear anything the day of surgery, when I was in the room, the coordinator came in and I said how's the donor? The donor happened, or the recipient happened to be in the same hospital. Matter of fact, they happened to be in the next OR, next OR, and they said he. So. The first time I found out the janitor, he's doing great. He passed urine, which is the test, while he was on the table. That's the first test that the transplant's working. I start crying. I just start crying because you know it's all worthwhile. That was the whole deal, and so that was it. That was it.
Speaker 2:So it was about two months after I'm sitting in the kitchen and the phone rang. Like most people, if I don't recognize the number, I let it go to voicemail. But I picked it up and this voice came up and said said you don't know me? Oh, and I knew exactly who it was. Oh, I did. He went on and said name's David, 70 years old. Totally given up hope. There was no hope. Nobody's going to get a kid who's 70, you know, from a non-directed donor. And said he's doing great, and so we arranged to meet. He's a Hispanic guy, so it kind of is a cultural thing. He brought the whole family Right and so it was. That was good. But there was nothing like that phone call. How do you tell someone about that? There was no doubt in my mind was it all worthwhile? Would I do it again? Absolutely. But that was like the crowning moment, that yeah you know, what Thumbs up.
Speaker 2:There's one thing I want to add, laurie, about this process that you'd ask about. I like to say that I went skipping and singing through this process. From now on, it became a non-directed donation to a stranger, and so, you know, I started praying for a sign. You know what I really like is, like a cheap hotel, a neon sign that flashed yeah, this is what you want to do. Okay, so this fellow that I really didn't know that well, kind of called me out of the blue and said, hey, he said I heard something really good today. I said oh, okay, what is it? He said let me see if I got this right. He said we all can't do great things, but we all can do small things with great love. Boom, there's the answer. As it turns out, I looked it up as Mother Teresa said that, I said well, that's why I'm here, that's what this thing is all about. So that was just kind of my little moment of clarity, or said, yeah, you're on the right track.
Speaker 1:That was your flashing neon sign.
Speaker 2:Yeah, yeah, I wanted to interject that.
Speaker 1:No, I think it's beautiful. We so often hear donors talk about signs or how one thing aligned after the next to make it possible to donate, and I think that's one of the beautiful parts about donation.
Speaker 2:Oh, I need to go back to David real quick. This is what I forgot. As we got to talk, I said well, when did you get the call that they had a kidney for you? Remember I said that at 70, there was no hope. And he said he got the call. And he said I'm sorry you had the wrong number. And they said no, no, no, this is David so-and-so. And he said he couldn't believe it. He said he was looking at the phone like there's really a kidney Really. So, anyhow it was maybe I think something's lost in the trans translation because, uh, he won't he argued with him that they had they had the wrong person.
Speaker 1:So, as it turned out, it was the right person wow, had he been pursuing living donation or had he just kind of decided to stay on dialysis?
Speaker 2:no, he had. He had not pursued. He needed a guide for the system that's my impression and there wasn't one. And so, as far as trying to actively do the things to improve his chances of finding a donor, I think that was pretty elementary, if much at all.
Speaker 1:So if Ernie had never been on dialysis, david probably wouldn't have a new kidney right now.
Speaker 2:No, no, absolutely not. Low chance, no chance, yeah, and this is what I keep going back to. This is my biggest job today as a donor, the way I feel it is Anything that I can do to not hype donation no, that's the worst thing I could do. But just to help clear up these many misconceptions, like am I walking with a cane now because I donated a kidney?
Speaker 1:So someone said that to you, Tom. They wanted to know if you're the cane after this.
Speaker 2:That's not the best one. The best one is someone said, well, does that affect your, you know? I said no, I don't know. They said, well, you know, does that affect your? And I said, oh no no, no, it has no effect on other things.
Speaker 1:Matter of fact, this is sex. Sorry, I just wanted you to clarify that for the audience you asked.
Speaker 2:But so this is what I tell everyone. I say I cannot tell the difference between one kidney and two.
Speaker 1:Well, congratulations to you being the oldest non-directed donor. I did look it up to see how many people in your age range donate each year. Do you have any idea how many non-directed donors there are in your age range?
Speaker 2:I think the latest statistic I heard was between 300 and 350 total non-directed donors. Is that pretty close?
Speaker 1:So of all ages in 2023, there were 406 non-directed donors and only 29 were age 65 or above, so you're part of a very small minority.
Speaker 2:Let's make it bigger.
Speaker 1:Let's make it bigger.
Speaker 2:I have a feeling you're just the guy to do that. Well, you can go to the.
Speaker 1:AARP meetings and preach about kidney donation.
Speaker 2:I think that's my mission in life really. It's just to say hey. First of all, relax, take it easy, let's see if you qualify, and there will be tremendous people to walk with you step by step, and you're one of them. The high point of my day is meeting other donors. The second high point of my day is meeting other donors. The second high point of my day is meeting other recipients.
Speaker 1:So that's where I'm coming from. Well, thank you for sharing your story with us today and congratulations to you on a successful donation and a really beautiful and inspiring story.
Speaker 2:Well, Lori, it's been so nice talking with you and look forward to visiting with you in the future.
Speaker 1:What I love about Tom's story is that it showcases something we occasionally see with donors that is truly inspiring. Despite his loved one receiving a kidney from another source during his own evaluation process, tom stayed committed and chose to help someone else in need, just because In some instances, these donors become voucher donors, ensuring their loved one has access to a kidney in the future if another transplant is ever needed. Just consider the impact of this for a second. Not only does a patient receive a life-saving kidney from a living donor today, but they also gain the reassurance that a future transplant is guaranteed if necessary. This is especially crucial for younger recipients, who may require multiple transplants over the course of their lifetime. If your loved one receives a kidney before you have a chance to finish your evaluation and donate yours, you can still make a profound difference for someone else in need if you want to do that. It's okay and perfectly normal to fall in love with the idea of giving along the way.
Speaker 1:This season of Donor Diaries is proudly sponsored by GiftWorks, an organization dedicated to empowering organ recipients and living donors through education, advocacy and support. By helping patients share their journeys and connect with donors, giftworks ensures everyone feels supported throughout the transplant process. We're honored to partner with a team that's transforming lives, one transplant at a time. To learn more, visit yourgiftworkscom. Join us next month as Donor Diaries goes international for the first time, with an inspiring interview from Munich, germany. We'll be talking to non-directed donor Will Johnson to get a glimpse into how living donation and paired exchange works in Germany. Can't wait to share our afternoon in Munich with you. Remember, every act of kindness creates ripples. Thanks for listening and keep spreading those positive vibes. This is Lori Lee signing off. I just want to feel the sunshine. I just want to feel the sunshine. I share this life with you. I share this life with you.
