Why People Say Yes to Living Donation | EP 42

In this episode of Donor Diaries, we sit down with Dr. Amy Waterman, a national leader in transplant health services research and patient engagement at Houston Methodist, to talk about what we know about living donors, and what we are still learning.

Amy has spent her career studying how to help patients and living donors make informed, confident decisions. We talk about why long term living donor research takes decades, why comparison groups matter when studying donor outcomes, and why understanding donor motivations is so important when designing education and support programs.

We also talk about something that does not get discussed enough: donors are not all the same. Amy shares three common donor motivation profiles and how understanding these differences helps transplant centers better support donors before and after surgery. We also talk about donor identity, why some donors stay deeply connected to the donor community while others quietly move on with their lives, and what both experiences can teach us.

Finally, we talk about what helps right now. Peer mentoring. Reducing financial barriers. Education that respects that different donors are motivated by different things. And the growing role of digital storytelling, which allows people who are considering donation to hear real voices and real stories in a low pressure way.

This is a thoughtful conversation about research, decision making, and the very human reasons people choose to become living donors.

Dr. Amy Waterman is a national leader in transplant health services research and serves as Director of Patient Engagement and Education at Houston Methodist. Her work focuses on improving access to transplant, supporting informed decision making, and developing education and engagement tools for transplant patients and living donors. She has led numerous research initiatives, including digital storytelling and patient education programs, and has received nearly $30 million in federal grant funding. Dr. Waterman has authored more than 125 peer reviewed publications and has been recognized by the American Society of Transplantation as a Clinician of Distinction.

Links

The Waterman Lab website
Explore Transplant
Living Donor Collective
Livingdonorstories.org

Donor Diaries Website
Donor Diaries on Facebook
GiftWorks Website
Connect with Laurie Lee

Transcript

A Bold Case For Donating

SPEAKER_01 0:00

I think that people who want their lives to matter, you can donate a kidney. I think that's absolutely amazing, or a lobe of your liver. It's a training ground for doing things that matter. And then in anything.

SPEAKER_00 0:13

So,

Meet Research Leader Amy Waterman

SPEAKER_00 0:37

I'm not sure.

SPEAKER_02 0:37

Welcome back to Donor Diaries, a podcast that celebrates the beautiful world of transplant, sharing stories from donors, recipients, and the professionals who make it all possible. Today's guest is someone I've been wanting to have on Donor Diaries for a long time because her work lives at the intersection of research, patient experience, and real-world impact. I'm joined by Amy Waterman. Amy is a national leader in transplant health services research and currently serves as FAST Director and Patient Engagement Professor of Outcomes Research and Surgery at Houston Methodist Academic Institute. She represents both the JC Walter Transplant Center at Houston Methodist Hospital and the Houston Methodist Research Institute, where she holds the Deborah C. and Clifton B. Phillips Centennial Chair in Clinical Research and Transplant Medicine. At the core of Amy's work is improving access to transplant and helping patients and donors make truly informed decisions. She has developed innovative educational tools from mobile apps and digital storytelling to social media-based strategies all designed to meet people where they are. I'm really excited for this conversation because Amy doesn't just study transplant systems. She works to change them in thoughtful, human-centered ways. Welcome, Amy. I'm so excited to have you as a guest today. I was so excited to be on your podcast.

Why Long-Term Donor Data Is Hard

SPEAKER_02 2:01

Well, I have to tell you, one of the things that has drawn me towards the type of work you do, Amy, is, and I'd be curious if you agree with me, but it doesn't feel like there's a ton of research out there on donors. And you seem to be one of the people who are actually asking those questions and giving us information about who donors are and what happens to them after they donate. Do you feel like that's accurate?

SPEAKER_01 2:25

I think there's there's a lot of levels to think about. So the first part is medically what information is out there about being a donor. So people are thinking about being donors, some of them become donors, and then what happens after? And it's to me, it's totally normal. Like if you have a baby, you know, how do you do afterwards? It's a normal question, right? I'm a member, I'm the deputy director of a group uh called the Living Donor Collective, which is tracking potential and actual living donors long term, but you just have to let time pass. So the big thing I think that you're touching on, which is true, is 30 years from today, we need lots of people who are donors to follow them for their lifetime, right? Yes. Time has to pass. So we don't have answers to some really critical questions that 40 years down the road, what happens? We can look at anecdotal data that we have on donors. What I would want, which is you know, a big registry of all donors ever who have been part of this, and you know, how is their health? And the other part that I think is important for people to know is you want the long-term 40-year trajectory of being a donor, but you also want a comparison group. The normal person in our society, they're probably not healthy enough, many of them, to become donors. So if you compare them against donors, donors are going to look really healthy, successful, and live a long time. And that's because our normal human population is less healthy than most donors. So a lot of the work we're trying to do on the ground now is to say, okay, we want to follow donors long term. We also want to follow people who thought about being donors, maybe came in, but they didn't donate. And now you've got two groups of people, potential donors and actual donors, and we can follow them long term. So that's the intention of the Living Donor Collective.

SPEAKER_02 4:19

And I imagine it's a little bit harder to get data on the people who dropped out for one reason or another, because a lot of them do exactly that. They just kind of fall off the radar and they stop responding.

Donor Identity And Community Belonging

SPEAKER_01 4:31

Yes. Yes, you're insightful and correct. The key thing is do you identify as a donor? And what I notice is there's some people that this becomes very much part of their identity, right? I am a living donor, I am part of a bicycle club, this is my faith community. Other people say I donated a kidney and I moved on with my life. Like I don't consider myself having a new type of identity. It's definitely true, though, for people who were screened or evaluated initially as a donor and never became one because they're not even part of the community. So yeah, collecting this kind of data is it's hard and critical to do, is probably both of them at the same time. And I think there are people who are donors, they donated, they moved on with their life, and they don't say they're part of the community. Have you found that in your experiences?

SPEAKER_02 5:17

Yeah, I have. And I feel a little bit sad for the people who aren't part of the community because to me, that was the most huge, unexpected gift that I wasn't looking for. I feel like there's so many common threads about who we are and what motivates us that it's just interesting to me. Then more often than not, when I sit down with another donor, there's a lot to talk about, and it's not just about kidneys. So when people aren't part of that community, I fully respect it. And I know it's not for everyone. People say I've got enough friends, I don't need more, but it's important to me. And I think a lot of people do find a lot of value in that community.

SPEAKER_01 5:57

Yes, I would say so too.

The Calls That Changed Her Career

SPEAKER_01 5:59

And my um, my kind of foundational reason I'm in this field is because I had a great experience talking to a lot of donors at an early age. So I was a research graduate student, you know, I needed money for summer. So I got funded to call actual donors to talk about if they had any regrets. So the idea was all day, all summer long, for two months, I'd call one donor after the other and I would say, you know, do you regret your decision? And I would say, Are you harmed? And I would say, are you close with the person you donated your organ to? And and all of these things. And so I felt like the bad news police, right? Like, did this happen? Did this happen? You have health insurance. Our work and other people's work has shown is those bad outcomes that everyone's worrying about very rarely happen, you know, 5% or less from for most of them. But the thing that was fascinating as a 28-year-old was that people would say, Could I tell you what I got out of being a donor one after the other? So they would they'd say no to the majority of these things. And then they'd say, Could I tell you about my life? And so I'm sitting there and I don't, I haven't donated an organ. And I'm like, sure. And the one that echoes for me is the person who said, I became a poet after I donated a kidney because I got what life was about. And so I'm sitting here, I haven't donated an organ. And I was like, What did you get? Right. And I, and so in the course of doing this, people were just telling me about gratitude and how important it was, meaningful it was, fulfilling in all of these ways. And I was bulled over. And I had this experience of both asking all these hard questions and then also hearing these beautiful stories, and it changed me forever. That's what I can tell you. Yeah. And I really got that it's I've been in this field for a long time now, over 20 years. And whenever I lose focus on, you know, the challenges of life, it's just it trues me up. And so I'm very grateful.

SPEAKER_02 7:56

I bet it does. That's incredible. So let's back up. That was when you were 28. Tell us a little bit about your career and how you ended up doing what you're doing

Building Better Systems For Patients

SPEAKER_02 8:06

today. Sure.

SPEAKER_01 8:07

So I'm a social psychologist, and that's kind of important to understand about me because the psychology side of me says I'm really with people in moments of vulnerability and challenge and inquiry. And my training there is to just sit and honor that people need room to have informed discussions, to think through what's right for them. And I love doing that. But the social psychology side is that I think about building systems so that that can be embedded in care. So rather than me being a clinical therapist type person, I actually say, how can what I do for a living help so that all the people who are working, no matter where a person might sit and talk to somebody, patients can have the best experience. And so that was my training. And then after discovering this passion of kidney transplant and living donation, then I moved into working at three major transplant centers in the course of my career. So I've been at Washington University School of Medicine and Barnes Dewish Hospital and their transplant center. I then went to UCLA and was in nephrology and was working with their transplant community. And then finally, now I'm at Houston Methodist Hospital where I'm the director of patient engagement in the transplant center itself. And then I'm also still a researcher figuring out and doing a lot of science to understand how do we help our patients have a better experience and our donors as well. Patient engagement is actually a really exciting field in general because we've learned that when patients and family members and donors are empowered, the whole healthcare experience is going to go better. Your expectations can be accurate so you're not coming in surprised or overwhelmed. And then your health outcomes are better. And if somebody's walking in to do this at peace and prepared, then I did my job. So one of the things I do is I make sure people that are donors have their out-of-pocket uh expenses covered so that they can have more time off work and that can be covered. I am an advocate for all of those kinds of programs. I'm referring people to peer mentors all the time. About six to seven thousand people donate a kidney every year. And when people talk to me, they say, Have they ever met another kidney donor? Are you hearing this too? Is that like a podcast? Right. So it's like your podcast gives everybody the opportunity to meet other living donors and to say, would I ever do this? I spend time referring to people now, start referring people to your podcast, but

Peer Mentors And Digital Storytelling

SPEAKER_01 10:31

I refer people to peer mentoring programs like the National Kidney Foundation. They have a peer mentoring program that any person even thinking about being a donor, a potential donor, can go and talk to another donor. And I'm like, that's invaluable. And then the other thing we do is the digital storytelling work. Do you know about this?

SPEAKER_02 10:46

I do. You have the largest digital storytelling platform of donors, and you can sort it by age, by gender, by race, by anything. So you can find a story of somebody who looks like you, basically. Do I understand that correctly? Exactly.

SPEAKER_01 11:03

And what I love is learning what people want and need in stories. I always think, okay, well, this is a weird thing. If I said, would you ever go through a surgery for another person? People say, maybe. So then the thought is, well, maybe you need to meet people in a really non-stressful way where you could kind of peek into their lives and why they did that and start forming your own thoughts, opinions, you know, conclusions. And I feel like if you talk to a live person, that's obviously wonderful, but you might not be ready to do that. So I think your podcast is great because I think people could just listen to a podcast of real people talking about doing it. I think the digital storytelling program is similar in that way where we are trying to have people have a lot of voices and not censor those. So what we do is we invite anybody. So you're invited, I'm Lori, you come and tell your story. If any of your listeners would like to tell their story, they are welcome to do so on living donorstories.org. And we will put that in the show notes so people can go there. Thank you. I appreciate it. And so the idea is people in English, Spanish, French can tell their experiences of being a donor. They can also tell their experiences of being someone who received a living donor transplant because they're people that say, could I let my wife do this? Could I let my daughter do this? And so they need to hear that side as well. So people come and then they go on this platform and then they explore in whatever way appeals to them. And then my job is to make as many stories available and to really have this be an easy way for a lot of people to learn about living donation. So it's been a joy. How many stories do you have on your website? I think there's at least 200 stories now. They keep coming in every single day for living donation. But now there's new libraries coming in for people who decide to donate their organs when they pass away and why they do that. And, you know, people who've gotten lung transplants and liver transplants. So the storytelling methodology is being expanded to cover lots of the kind of situations that people are dealing with in their lives now. That's really important. It's been very beautiful that people have trusted this platform with their stories. If you ever have anyone who wants to do this, you sign a release that you're willing to tell your story. And at the end, when you're done, you sign a second release to say, I'm going to release it to the public. So people feel that, you know, I am choosing to give this to the world for the greater good. Maybe there's something in one of these stories that helps someone with a decision or it echoes for them, or the beauty of our field can be communicated better because of just the number of these real voices. So I think it's great to get the voices of these good people out there.

SPEAKER_02 13:52

I do too. And I can't tell you how much I appreciate that you've created a space for people to share because I think many people want to share and they don't know how.

Three Donor Motivation Profiles Explained

SPEAKER_02 14:03

Amy, your line of research has interested me for years, but the work that really prompted me to reach out and invite you on to donor diaries is your research on the three donor personality profiles. And I heard you talk about this at the World Transplant Congress, and it completely resonated with me. Not only did it ring true based on my own experience, it felt like you were putting language and data around something I intuitively knew to be true for a really long time. And there really do seem to be three broad buckets of donor motivations. And it was incredibly validating to hear scientists articulate and confirm that. Can you talk about that research and what you found?

SPEAKER_01 14:46

Okay, so I think an important thing for your listeners to think about as they're driving in their cars, which is when I listen to podcasts, is that people are motivated to do generous things from different places. Okay. And I always thought there was one place because I saw it all the time when I was uh working in the transplant center. And the place is that somebody is touched and moved by the need of another person. So it's, you know, their family member, their friend, and they're like, oh, my heart is touched. And if there's something I can do, I want to do that. And that is actually the most common motivation for living donors. And uh generally they we call this the caretaker profile because it's really just if I can help, I want to. And I was like, Oh, that's great. There's a lot of loving, caring, heartfelt people. Well, there's actually two other motivations, and I love these even better now that I know they exist, because I it was like a big discovery for me this year. So the second motivation is that people want their lives to matter. So they say, look, if I can do this, if I can donate a kidney in my lifetime, this will have me feel really that I expressed what was important to me. That I came in this world, I left a legacy already. There could be other legacies that I leave, and this matters. It's about me. And then the last group is a practical, a pragmatic group who say, you know what, there's a societal need. It's not about my heart. You know, it seems kind of like logical almost. If I can donate and it'll help somebody else and it doesn't harm me, why not? So that there's the heartfelt motivating group, the making my life matter group, and the practical solve a you know, societal problem group. And those three areas make up the kind of sum total of people who donate organs as we know it now. There might be other ones that appear. You heard me speak about this before. What were you left with when you heard it for the first time?

SPEAKER_02 16:43

I was just in your audience and I was kind of cracking up because as you talked about them in more depth than you just described them. And I could think of multiple people who fell into each of your buckets as you described them. And it feels very true to me that those are the three main ones. If not, I might have described them differently if you said, Lori, what do you think the three different types of donors are? But I think it I think it would have been close.

SPEAKER_01 17:08

Now you should discuss them. How indeed?

SPEAKER_02 17:10

Um so your third one, the ones who think it's practical. I feel like I know a lot of men who fall into that category and people who are into effective altruism, people who are saying, I can make an impact. How can I make the most impact with the least amount of effort? So those people. So that would have been my first group. The second group I would have called people who want to be part of something that is bigger than them. And that's that's my group. So that's probably your middle group as well. You describe that as you want your life to matter.

SPEAKER_01 17:42

Yes. You wanted your life to express something bigger than just your circumstances. Is that can you say a little bit more about that?

Legacy, Impact, And Generations Of Good

SPEAKER_02 17:52

Yeah. So I donated because my dad received a liver from a deceased donor, and it was just so powerful to receive that gift that I thought the universe threw this beautiful gift my way, and I have this opportunity to throw it back. To me, it felt like, and I this is where I feel connected to other donors as well. I feel like we have a different connection to the whole than others might. And to be part of something that is so much bigger than me really appeals to me.

SPEAKER_00 18:24

Yes.

SPEAKER_02 18:24

And that goes into little things, even. Like, I've never been part of a flash mob, but I really want to be in a flash mob and be somewhere where we're like doing the Michael Jackson thriller dance in a public space to just like make all the people around just so happy. Like, wouldn't you be so excited if you got to see that in real life?

SPEAKER_01 18:43

For sure.

SPEAKER_02 18:44

Yeah. So I like to be part of something bigger than me that sends that big bolt of lightning out there of happiness or feeling good.

SPEAKER_01 18:53

Interesting. So you fit the second. Okay, this is so great. I love to hear people connect with these and especially thank you for your own personal story. Because for you, then is it about that your life isn't just about yourself, it's about others and yourself, like your part, or is it about the bigness of what you got to do?

SPEAKER_02 19:11

I I wish there was just more things I could do that were an inconvenience for three weeks of my life that I know made that big of an impact. And I just can't think of other things I can do. And if you think of more things like this, Amy, I'll do it. Sign me up. But to me, it felt like the biggest bang for my buck. The effect of it will go on and affect generations of people. But I can't think of other ways I could spend my time or use my body that would provide that positive of an impact.

SPEAKER_01 19:41

Interesting. Okay, so this is my personal reaction to this instead of my transplant professional, not that they aren't the same. But the feeling that I get is as I look to what's important, I want to have my life, I want to do what's important. I don't want to waste my time. I feel that life's very precious. I think we all can influence each other for the good. And then the idea is what's an important use of my time? An important use of my training, an important use of being with people. Fundamentally, I just love people. I really I think we're all just these interesting, intricate beings, and we need things. And I just love to honor people and be there and and be a witness and give people safe spaces. Like I'm really clear at this point. I just know what I'm supposed to do. So I joke I love people for a living. So I definitely think this is a big difference. For people who want to make a big difference, this is something that no question makes a big difference in someone's life. And I I've never heard anyone say it. I really love what you just said about it's that person's life and health, but it's also all the people that that person is going to influence after. Yeah. I love that that you're thinking about the generations of good as opposed to the person who gets the organ.

SPEAKER_02 21:04

My niece and nephew were little kids when my dad got his liver. And they are profoundly affected by his presence in their life and his love. So they wouldn't have had that. They would have been slightly different people without that gift, you know. So yeah, I think about the generations.

SPEAKER_01 21:23

Yeah. That's amazing. Yeah, I've never thought that far forward. I live on this line. So, okay, this is a share here.

A Spiritual Lens On Life And Death

SPEAKER_01 21:30

So I was just in Japan on a spiritual pilgrimage. I love to go and look for different expressions of connecting and the divine. And so I'm in Japan and there's this famous cemetery. And the idea is the first part of the cemetery, you're walking in the living. And then the second part is you cross the bridge and now you're walking with the people who've passed away. And then the last part is there is the Buddhist being that is not in the temple, but is praying for the good of all people. People. So there's actually no one in the temple. They don't believe the person died, but that being is praying for the good. In our group, we're all from every walk of life and spiritual tradition. And they said, okay, in the Buddhist tradition, we believe that your ancestors are always with you. So we all took a second and we presenced all of our ancestors as we began to walk. Then we cross over the bridge, and people were inviting their ancestors to walk with them, which was really cool. And as we were walking, they would have little statues and they would have, you know, uh various things made out of stone, you know, ducks for certain people who'd passed away. And there were little red hats on the statues, little knitted caps, and there were things on the stones. And I was like, What are those? And they said, Oh, well, we thought since we believe our ancestors are with us, we wanted to put hats on the statues because we thought they might be cold. So you're walking in, you know, I've never seen a cemetery where the images of angels and and people and all of this have clothing on because they're with us. And so it was so beautiful. But as I walked between the alive part and the part about people who pass away, I said, this is what organ donation is like, because I happen to get the gift of being in this field. I walk with people who are alive and need organs, and then some of them pass away and organs aren't there, and one did not come in time. And then I also get to see people are on the bridge saying, I might be dying or I might return to life, and then they return to life and some pass away. And I said, I'm on this walk as a career, and it makes me a better person. And the fact that it wasn't a surprise for me, right? Because you're you're meditative and you're in this space and you're thinking about life and death. But because I work in organ donation, I'm like, yeah, this makes sense. It's not that it wasn't moving, but it was familiar.

SPEAKER_02 23:58

And was your husband like she's talking about kidneys again?

SPEAKER_01 24:01

No, everyone, the running joke is that no matter where I am, somebody shares a kidney story. It doesn't matter. I like I'm a space in which you know people come to me and they have it's their stories. I'm just a space to receive their stories. But yeah, it is there was someone on the trip thinking she might need a liver transplant. So you know, all of these things they you know, it's everywhere. This is part of the human condition, as my mother, the social worker, says. And so I just get to live in it all the time.

SPEAKER_02 24:29

So you know, we don't know each other well, but scientists rarely are woo-woo people, and that was a woo-woo story, Amy.

SPEAKER_01 24:38

Oh, well, I'm a woo-woo person. I really think this is one of the most beautiful parts of humanity, and it teaches people. I get to learn from the things people tell me about what they're learning, being donors. To go back to the point about what's important, right? I only want to do what's important in life. I used to care about a lot of things. I think it's also about being in my 50s. Somebody said that in your 50s, you you get this magic uh moment of being a woman where you just don't care what other people think anymore. I think that's 40s. Your your give a shit goes away. I know. Let me just say, whenever the year, I highly recommend this because now all of a sudden I'm like, who cares? My boss and I, we've talked about how he's uh the head of surgery. We've talked about how he will sit when the transplant doesn't work and he will be with people just to honor and be a witness at that point. And I think there's so much depth of this field, and I appreciate what you're trying to do to have people hear about it. It's a beautiful, meaningful place. To go back to your point, you want to be part of something big that matters for anybody that says that's part of what I want my life to be about, whether it's to have your own children, whether it's about to, you know, I don't know. It doesn't have to be organ donation, but I wanted my life to matter too. And I I don't know why. As a little kid, you know, I was like, I want my life to make a big difference. And I can really say that my career has made an international difference now. Like I'm going to countries that I didn't even know where they were on a map before I was invited to see there. You know what I mean? I have to, I need a globe. You know, like when you put the pins. What country was it? Estonia. Where's Estonia? You know what I mean? Like what? But the other part that is so great, like I went to this World Health Organization meeting. It was actually hosted in this in in Santander, Spain. And there was one person from every country, or one to three people, maybe. I don't know. I'm not speaking it probably perfectly accurately. But we were all there and we were talking about what are the main principles and tenets that all organ donation around the globe would want to stand for. And I came to speak on the living donation ones. And at the end, we built a set of principles. And the kind of things I stood for

Why Donors Donate Again

SPEAKER_01 26:52

were, to me, very obvious and universal that you shouldn't exploit anybody that's poor if they need organs, and that you should give people the room to choose and have the information that they need. And we should have living donation programs in all countries. These are not big, wise, insightful things. They are like the fundamentals of living donation, but the United States is leading in living donation. There's a few other countries like that too. And there are countries that don't have these programs at all. And only deceased donation is legal, which is interesting. So we we stood for these things, and um, then the World Health Organization adopted them as the universal principles of organ donation for the globe. Wow, you mean like holy cow, this is worth me doing my life for. It is. Yeah. And now maybe this will help somewhere. I think that people who want their lives to matter, you can donate a kidney. I think that's absolutely amazing, or a lobe of your liver. It's a training ground for doing things that matter and then in anything.

SPEAKER_02 27:55

So I agree. I think it's a training ground. That's a good way to put it because we do see people donate kidneys and then go on to donate their liver, or it normalizes giving in a really special way.

SPEAKER_01 28:08

It does. And it challenges people, I think, that are closed in some way. I think we as a community are inviting people to become more open, is what I think that the space is and to bring hope. My feeling right now in this time of where there's a lot of people saying we should all be separate and fend for ourselves, if we can say, I invite you to still be generous and to be hopeful, we have to loudly champion the goodness of us and the goodness of our field, and that the fact that this is happening every day so that people can be inspired and soothed almost in this time where people are like, Are we all out to get each other? No, they're good people in every religion and race and ethnicity, and this is happening. Am I more important? No. But did I get to make my influence? Did my life matter? And did do I get to go home and feel good about my day? Are you kidding? Every single day.

SPEAKER_02 29:06

Yeah.

SPEAKER_01 29:06

That's that's a life worth living. So thank you for asking these great questions.

SPEAKER_02 29:11

Yeah, yeah. I think it's disconnect is what makes people sick and unhappy, and connection is what makes us feel fulfilled. And I think that donating an organ, unless you're hiding under a rock afterwards, is an amazing way to connect to humanity.

SPEAKER_01 29:29

Yeah, I agree. I would love to hear, like I heard the person talk about being a poet. I would love to find all of the deep ways in which being a donor changed people. What I gained was so much greater than the sacrifice. And how would you put that into words, what you gained that that somebody maybe wouldn't obviously get?

SPEAKER_02 29:50

My connection. I think it's about my connection to the whole and how important that is to me to not live in separateness from the whole.

SPEAKER_01 29:59

Yeah. Yeah. I think for me, the big thing that I think about when I'm in a hospital is I think, you know, no one wants to be in a hospital. No one ever wants to meet me in any serious way. Today is not my day to need to be in a hospital. But if the day that I need to be here for my appointment, if there could be somebody like me, I want to be part of building that system.

SPEAKER_02 30:27

I want to be part of building that system too. Yeah. One of the things I frequently hear is that over 95% of donors say if given the opportunity, they would donate again. Is that a true statistic?

SPEAKER_01 30:40

That's true. Yeah. If I'm doing my job right, anybody that this isn't the right choice for them will have an ability to discern that for themselves and then to say no. So our job is to make sure they're going to be healthy, it won't harm them. And they made an informed choice. Half of it's

Storytelling Invitation And Closing

SPEAKER_01 30:55

on us. But the second part is that when people step forward, that even though there are things they have to go through, those things do not outweigh the good that they did and the value that they felt they provided. And we see that consistently.

SPEAKER_02 31:08

How do you measure their happiness?

SPEAKER_01 31:11

That's my whole life's work. There's a lot of ways you can measure. I think they tell you that's the first part. So they have to assess that. So you could take it apart if you wanted to be very scientific about it, right? You could say, okay, regret. Where could regret happen? You could regret could be that the organ failed. So I did this and it didn't work. Maybe people wouldn't said, Well, if I knew it wouldn't work, I wouldn't have tried it. And many people have said to me, Well, I needed to do what I could do in the circumstance. I couldn't control whether it worked forever or it matched. So that that I think is something that I've learned because I would think, well, maybe you would regret it if it didn't work for the person for 20 years, which is what you want it to have happen. And people have said, no, I got to help them for three years or I got to try, or and if I didn't try, I would have regretted that. So that's an interesting example of something that like you think is there a reason. And as we're talking about these big as you woo-woo things, these big deep motivations. I think if you get to express a deep motivation, whatever happens, the fact that you have some pain and you have two more medical appointments or whatever, then it's okay. I think for me, someone who would say, I don't want to do this again, would be somebody who wasn't coming from a place that was pretty unshakable for them. Do you know what I mean? Like they're different places and I honor all those places. But yeah, because like, okay, your maybe your recipient um would not be appropriately grateful. That's possible. Right. So, well, why did you do it in the first place? Was it for them to be very grateful in a certain way that looked a certain way? Or would you be okay if they didn't look that way? Do you have to know the person you donated to? Do you know the person? Have you met the person you donated to?

SPEAKER_02 33:00

I understood that my recipient might not want to meet, but my experience was is all the people I knew who were donor and recipients, they had these close relationships. So I saw one thing and then the exact opposite happened to me. And I was sad. And now I'm grateful because I feel like it was a really amazing lesson. And I was supposed to learn that lesson and I learned it in a very profound way.

SPEAKER_00 33:24

Yes.

SPEAKER_02 33:25

So it's just part of my story now and my kidney somewhere in Texas with you. So I know that much, but I yeah.

SPEAKER_01 33:30

Wouldn't it be weird if I took care of the person that you don't know and they came in to get their kidney care here?

SPEAKER_02 33:38

I bet I bet you could figure that out if I gave you some dates, Amy. Oh no. Now we break everybody's confidentiality.

SPEAKER_01 33:46

Yes. Yeah, but it it's interesting because that goes back to the universal, then, right? You you didn't get an individual experience, you got the connection to the universal and the that you're talking about. Do you know what I mean? I do, I do. Yeah, yeah. Well, I've met somebody who said, I wanted to do this for the greater good, very much in the pragmatist camp. Yes. I wanted to do a universal good. I wished that organ well and I moved on with my life. And so yeah, she didn't want an identification as a donor. It was she wanted to be healthy, but then she just wanted to do the good. Yeah, it's fascinating. This is such a we could talk about this forever.

SPEAKER_02 34:21

Yeah, we could. Well, thank you so much for your time today. I enjoyed that. And I hope that I get the opportunity whenever I see you, you're surrounded by people. But I would love to sit down with you uh one-to-one sometime and talk some more because I think we have a lot to talk about and a lot to share with each other.

SPEAKER_01 34:36

Absolutely. No, it's so great, Lori. Thank you for what you're doing. Thank you to everyone who's listening and uh keep exploring what is beautiful and meaningful. Thank you, Amy.

SPEAKER_02 34:46

Thanks. Today I want to close with a quote from Maya Angelo that I love that I come back to again and again. She said, There's no greater agony than bearing an untold story inside you. Stories don't just live in our hearts, they live in our bodies, our choices, and our understanding of one another. And in transplant especially, stories are how people find courage, clarity, and sometimes the simple belief that they're not alone. Telling your story matters. Hearing other people's stories matters. And sometimes you're both the storyteller and the person who needs to listen. I want to invite you to check out the Living Donation Storytelling Project, and you can find a link to this in my show notes. Whether you're someone who wants to share your own experience, someone who would benefit from hearing the voices of others, or both, this is a platform that is truly worth your time. I'll be honest, I put off telling my story there for a long time because it just felt hard. I finally did it a few weeks ago, and I can tell you now it is the easiest website to navigate. The questions are broken up one at a time, so you don't have to memorize some big speech in advance. You can re-record as many times as you want, and it honestly ended up being really fun to do. The hardest part for me was putting on my makeup on a Saturday morning to record myself. Your story matters. Let people hear it. This season of Donor Diaries is sponsored by Giftworks, an organization dedicated to education, advocacy, and support for organ recipients and living donors. Giftworks celebrates the courage it takes to ask for help and the miraculous ways help often answers. Within this growing community, recipients, families, and donors come together to participate in a transformative exchange that reminds us of the power of human connection. Visit yourgiftworks.com to learn more. If you're enjoying donor diaries, a quick like or rating on your podcast app really does help more people find the show. And if you want to keep the conversation going between episodes, come find us on Facebook or Instagram. In closing, remember kindness matters and it's always a choice. This is Lori Lee signing off.