The Ethics of Kidney Donation

Tyler Gibb

Sometimes I think that my, I mean, I gave away my head of hair when I got children. All

Devan Stahl

right,

Tyler Gibb

all right. I don't know if he's given away willingly or not.

Tyler Gibb

Welcome to another episode of Bioethics for the People, an informal look at hot topics and neglected issues in bioethics, healthcare, medicine, and society.

Devan Stahl

Basically anything that we, your hosts, find interesting.

Tyler Gibb

I'm Tyler Gibb. in beautiful Kalamazoo, Michigan.

Devan Stahl

And I'm Devin Stahl in the slightly less beautiful Waco, Texas. Hey, wait a minute, Tyler. Did you mess with my script?

Tyler Gibb

Devin, welcome back. Season two.

Devan Stahl

It's so good to be here, Tyler.

Tyler Gibb

I know. It's been a weird, weird year. But here we are, back at it again. This season, we're going to have a little bit more variety in the types of things we talk about. And one of them... One of the episodes that I'm really excited about is this one right here about this book called Kidney to Share, which is written by Martha Gershon and John Lantos. So, Devin, my first question to you is what is the most valuable thing that you've ever given away?

Devan Stahl

That's such a good question and makes me feel pretty ungenerous because on the first take, I think, oh, gosh, what? Not very many things. I'm a gift giver for sure. Like that's my language is gifts. But as far as sort of like something I've owned that I've just given away to a stranger. Well, it just so happens that this week I gave away my mini fridge. You know, not the most valuable thing in the world, but I had this mini fridge in my office and a middle school in town burned down. And one of the teachers was on Facebook asking for a certain number of things for her classroom. that had been lost in the fire. And one of them was a mini fridge. And I thought, well, I have a mini fridge. There are lots of other things she needed that I didn't have, like, you know, zip up hoodies for eighth graders. I don't own a lot of those, but I did own this mini fridge. And so I brought it over to her house. I never actually ended up meeting her because she was away when I was at her house. But I decided that that was something that Would be easy to give away. And if I really needed one in the future, I could just buy another. Have you ever given away anything really valuable?

Tyler Gibb

Actually, the thing that I gave away once that was probably the most valuable and the most random and the most spontaneous was I gave away a car.

Devan Stahl

What?

Tyler Gibb

Yeah. And so I was an undergrad and I had purchased my dream car. I had purchased a 1964 Chevy Impala. And it was...

Tyler Gibb

It was exactly like you would imagine. It was huge. It was like 3,700 pounds. I mean, it would go around corners like a boat. It was amazing. But it also really needed somebody who knew how to restore a car. And I bought it on eBay. This story gets crazier the more I think about it. So I bought it on eBay, sight unseen, and drove up. Luckily, it ran. My buddy went up with me. It was a couple of hours away. Picked it up, drove it back. just barely made it home. And my goal was, my idea was, I'm going to fix this up, and then I'm going to sell it, and I'm going to buy an engagement ring for my now wife. And so that was my master plan. And the more I got into it, I can kind of tinker around with things around the house. I'm kind of handy, but I've never taken on a remodel of a car. And as I got into it, it needed way more work than I was able to do. And I thought, okay, I'm just going to do a little bit of the cosmetic stuff that I know how to do, and I'll sell it and make a little bit of a profit, and then do something else with my spare time. And so I posted it on a couple of auto trader websites and stuff. And I got a call from a guy who lived a couple hours away. And he said, you know what, I've been looking for this car. My son and I have had this really hard relationship, and we'd always talked about... restoring a car together and I just got laid off and you know I'm actually just calling to to talk about the car I can't really purchase it right now and I I feel bad even wasting your time and he and I had this like really nice conversation and I thought you know what I should just give it to him and It was one of those like spontaneous decisions where I was like, you know what, this is something that's really going to help this guy. It's, you know, several hundred dollars to me, but in the grand scheme of things, like it's not that big of a deal. And so I drove up to this area where this guy lived. I was able to find him on Facebook and I wrote him a note and I left the title in the car and I walked up and rang the doorbell and just handed the keys and walked away. And basically I've never heard from them ever again. But yeah. So I gave somebody a 1964 Impala.

Devan Stahl

That's a pretty good one. So Tyler, would you ever give somebody like, say, an organ?

Tyler Gibb

Well, so my wife knows my preferences to donate. And I don't know. I should maybe. I don't know. How about you?

Devan Stahl

So I am an organ. You know, if I were to die, I've checked that box on my license. I can't donate blood because I have an autoimmune disorder. So I've never really had to think about... would I be the kind of person who would donate, say, a kidney? But I do think there's something incredibly admirable, and I feel a little pang of guilt when I get approached, especially by bone marrow folks or folks who are trying to get donations for blood, that I can't do it. But I do wonder, if I could, would I be the kind of person who would donate a kidney to a stranger? That's sort of mind-blowing and hard to imagine, but it happens. something like 1,000 to 1,500 people every year donate a kidney to an absolute stranger in this country.

Tyler Gibb

Yeah, it's amazing that people do that, I think. I think I'm just fundamentally too selfish. I'd be scared of it not going well or, I don't know, maybe it's my fear of rejection that I would decide to do this and then someone would be like, nah, your organs aren't good enough or you're not healthy enough to donate. And then... My fear of failure would be triggered.

Devan Stahl

Yeah, so really terrible reasons not to donate is what I'm hearing. But today we're going to talk to a woman who did just this. She decided to donate her kidney to a stranger, somebody she read about in the newspaper. It's just an incredible story. And after listening to her and after reading the book about this, I mean, I was, I think, really compelled by her story. And she's both inspirational. And at the same time, I wonder, why don't more people decide to do this? I wonder if most people don't even really think about it or if it's an inherent selfishness on most of our parts.

Tyler Gibb

Those are really great questions and great concerns that I've heard other people express as well.

Devan Stahl

Well, we'll get into all of those questions with Martha. We'll see if by the end you are convinced that this is something you want to do. And if it is, we'll post resources on our website, bioethicswiththepeople.com and in the show notes. But feel free to email us. Tell us what you think. Is this something that you do? Is there really compelling reasons not to do it? Are you swayed by what Martha did? Cue the music. Cue

Tyler Gibb

the music.

Devan Stahl

Hello, everybody. We're excited to begin our season two with everyone. And we are joined by two authors whose book we're going to discuss today that we're really excited about. We have Martha Gershon. Martha is a nonprofit consultant and community activist and now author. And John Lantos is a pediatrician and bioethicist at Children's Mercy Hospital. So welcome to you both.

Dr. John Lantos

Thank you.

Devan Stahl

Thanks. So Martha and John, you both... wrote a book together. And I just want to ask you first, how do you know each other? And how did this book come about?

Dr. John Lantos

Yeah, Martha and I have known each other for ages. We are good friends in Kansas City. We belonged to the same synagogue. We've worked on various community projects and political campaigns together. So we go way back. And this book grew out of conversations that we had based on that long-time friendship.

Devan Stahl

And I suppose we should say right off the bat that the topic of this book is kidney donation. And it's a very personal book. Martha, you were actually a living donor. And I'm sure you get this question all the time. But what possessed you to want to donate a kidney?

Martha Gershun

I was reading an article in the Kansas City Jewish Chronicle about a woman who needed a kidney. And something about her story really spoke to me. She was in her... mid-50s. She had been a family law attorney working with children at risk. That is work I had done in my career. She had raised two children in the synagogue where me and my husband had raised our two children. And it hit a very specific time in my life. I had just retired. I was done with paid long-term work and looking for a project. And when I read this story, it jumped off the page at me, and I thought, I could do this. Now, I always hasten to add that living kidney donation is part of my family's story. My beloved cousin Anne in Omaha received a kidney from her best friend Cheryl Cooper in 2002. So I knew what it meant as a family member to have someone's life extended. But back then, I wasn't a match for Anne. I was early in my career. I had two kids at home. Life was complicated. Things had changed for me now, and I could do it.

Martha Gershun

I always want to say I'm not this great altruist who immediately ripped out my kidney and threw it at Deb to have it transplanted. What I really did is call a phone number to be tested to see if I was that one in 100,000 tissue-tight blood match and to see if I was physically and mentally able to donate. So when you decide to do this, you're not really deciding to do this. You're deciding to try to do this.

Tyler Gibb

I think what's interesting about the story that you tell during this book is the... the arduous process involved in going from reading that article in the newspaper, committing to trying to do it, and then actually the entire journey. It's almost an odyssey that you went through in order to get there. My question to start off with is, have you registered to donate other organs after you have died? Have you checked that box on your driver's license?

Martha Gershun

So I've always been a registered organ donor from the time I reached adulthood. I believe in recycling. And I think when you don't need something anymore, you should put it to better use. You should send your clothes to Goodwill and you should recycle your tin cans. And if you're dead and you don't need your organs anymore, they should go to someone who needs them. But that's easy because nobody says you're going to compromise your health or take time out of your schedule after you're dead. I had also registered to be a bone marrow. donor. And I suppose an important part of this story is that a long time ago in my 40s, I matched with a young girl who had aplastic anemia and needed a bone marrow transplant. And that was the first time in my life I felt that miracle touch of knowing that something about your body could literally save someone else's life. That story had an indeterminate ending. They did not take my bone marrow. I do not know if she got better and didn't need it, or if she died. All I know is that when I turned 60, I got a letter from the bone marrow registry saying, you've timed out, your bone marrow is now too old. So when I found this other opportunity, which is to donate a kidney, and by the way, you don't time out on kidney donations. People donate well into their 70s. Kidneys age better than bone marrow. It was sort of another chance to fill that little sparkle of specialness. Now, I will tell you, I have friends, and John is one of them, who weren't so sure I was making a good decision and who sort of kind of tried to talk me out of it in the beginning. This is not a decision one makes without pushback and without consideration.

Devan Stahl

Yeah, I imagine that a lot of your friends and family, at least initially, were like, ah, have you really thought about this? So John, what was sort of holding you back from embracing this wonderful gift that Martha wanted to give?

Dr. John Lantos

Really concerned about whether she had thought through the implications and the risks. Kidney donation has a long and controversial history in the world of bioethics and in the world of transplantation, living kidney donation. In the early days of transplantation, in the earliest days, the only successful donations were from identical twins because

Devan Stahl

nobody really understood

Dr. John Lantos

histocompatibility. There weren't good drugs to prevent rejection. And so if people got kidneys donated from either cadavers or from other relatives besides identical twins, the transplants just didn't work. And so nobody wanted to put living donors through what would ultimately be an unsuccessful and dangerous, potentially dangerous procedure. Over the years, kidney... Treatment of recipients got much better. We learned how to prevent rejection. Outcomes were better. And the pool of potential donors gradually expanded, first from identical twins to siblings, from siblings to cousins, initially just to people who were biologically related. Then it expanded even further to spouses who wanted to try to save their loved one, but who were not biologically related. And as the data came in, it became apparent that this was... at least successful. It was always controversial, though, whether it was appropriate to subject the donor to these risks of what's pretty major surgery. And at least at the beginning, unknown long-term outcomes. We now have a lot more data on outcomes. So when Martha first brought this up, I probed a little bit to see whether she'd done her homework and read what had been written about this and was really making an informed decision.

Tyler Gibb

John, can you give us some context or situate this a little bit in the history of kidney transplantation? What era or what year, roughly, were the first attempts at kidney transplantation? And when did it become more established and kind of standard of care?

Dr. John Lantos

So the first ones were in the 1950s. They were mostly done by a group at the Harvard hospitals and then gradually expanded out from there. pioneering work in the 50s has been summarized in a classic book in medical sociology called The Courage to Fail by Renee Fox. And she describes how miserable the initial outcomes were. Again, nobody understood immunology, rejection. immunosuppression and they do these transplants and the recipient would do well for a few days or a few weeks and then gradually either reject the kidney or when they tried to give immunosuppressive drugs, get overwhelming infections and die of sepsis. Through those pioneering efforts, though, and that evocative title, The Courage to Fail, pioneers really started to understand what led to successful kidney transplants. And by the 1960s and 70s, this was becoming more and more a standard of care. Kidney transplantation is unique and was in those days because there's an alternative, renal dialysis. It can keep someone with renal failure alive, although the outcomes on dialysis were initially better than transplant. Transplant quickly surpassed them, and so it became the treatment of choice by probably the mid-1970s.

Tyler Gibb

Was there a big difference between the process, maybe the medical technology necessary to do a donation from a dead donor versus a living donor? And what were the ethical differences between those types of procedures?

Dr. John Lantos

One of the things that made transplantation from dead donors more feasible and more likely to be successful was the invention of the concept of brain death. Brain death didn't exist before 1968. It was developed by a group again at Harvard who proposed in what it seems to me should have been a more radical concept than it was viewed at the time, proposed that people that had irreversible cessation of brain function should be dead. That allowed people to recover organs from those people before the organs had undergone damage from lack of adequate blood supply. and oxygenation. So that was the late 60s. Since then, we've developed a framework for allocation of organs from cadaveric donors called the UNOS system, United Network of Organ Sharing, which says who the organ should go to. Probably one of the biggest ethical and legal differences between living donation and cadaveric donation is generally for... Dead donors, they don't designate who gets their organ. It goes into a pool. It's treated as a communal resource. And the allocation is based on a widely agreed upon system of trying to direct the organs to the sickest people, the most desperate people, and the people who are most likely to benefit. So organs can travel around the country and usually go to strangers. With living donation, it is almost always a directed donation. Most of them are to a loved one or somebody the donor knows quite well. Some are anonymous. But that's the biggest ethical and legal difference. Of course, the medical difference is living donation, you're doing an operation on a living person. So you're much more concerned about their long-term outcome.

Martha Gershun

I'd like to jump in here. I'm not the doctor, but I've been reading a lot about this and I talk to John frequently. And one of the things I have learned... is that a living kidney is much better for the recipient. And that's for a number of reasons. It is more likely to last longer. It attaches immediately and starts working right away because it goes from one warm blood supply to another warm blood supply. And you can, of course, time the surgery. It's not, oh my gosh, somebody's died. Let's go find the recipient and fly them in and prep them and get ready. you can plan for it and make it a very well-considered decision. Both surgical teams can be ready to go. The operating room is all set up. You don't have to do it at 3 a.m. after the car accident. And so one reason that living kidney donations are preferable is because it gives the recipient a better shot at a longer life.

Devan Stahl

Yeah. And what's interesting about the history of the living organ donation was it sort of makes sense when you're a close family member, we recognize the psychological benefits to a family member of being able to save somebody close to them. And John, when you were narrating this in the book, there was an incredible skepticism towards stranger donors. Why would anyone want to give their kidney to a stranger? Might we be concerned that they have some sort of psychological issues or mental health problems or, you know, there was an incredible paternalism and skepticism of this population. And Martha, I'm just wondering, did you feel that from any of the health care providers that they were skeptical that you were an appropriate person to make this kind of donation?

Martha Gershun

I did. I got pushback and pull at the same time from the same transplant center. On the one hand, they very much wanted to recruit me and be sure that I was medically fit in order to donate to their patient, my recipient, whose life they were trying to save. So they wanted me. On the other hand, they very much did not want to take any risk with a donor. As John says, donors aren't sick when they start this process, and it's not the transplant center's job to make them sick. I didn't have any medical concerns of great import. There were a couple of small things. I tend to be overweight and I tend to struggle a little bit with hypertension. And they asked me to go on blood pressure medication for the duration of my life, probably. Certainly up until the transplant, but probably afterwards. Both my primary care physician and John have reassured me that A, it's a small dose and it won't hurt me. And B, I should probably have done it anyway. But that certainly was a medical intervention I undertook specifically to donate. On the mental health side, we had a couple of fun little kerfuffles. I disclosed on my early application to be a kidney donor two things that raised a bunch of red flags. And I have to say, I know this is terribly unethical, but if I had known the red flags, I just would have lied going in because it didn't matter. It just caused me a lot of trouble. So one of them is that I disclosed that. Now and again, I talked to a local therapist here, a woman who's helped me navigate some career decisions, some family decisions. I don't have a mental health diagnosis, but she's a big help to me and an important counselor. That was a big red flag. Could I have significant mental illness? Could I descend into depression after the donation? Could I kill myself? And so the transplant... clinic demanded that my therapist send my entire mental health record up to them before I could be considered. They did that before they would even test my blood to see if I was a tissue type match for this recipient. They weren't going to even spend the money on the blood test until they knew I wasn't crazy. My therapist, who's a smart cookie, said, no, these are your personal records. Once we send them up... I don't know where the HIPAA wall changes and where your records merge with your recipient's records. What you have to say about your family of origin and your employer is nobody's business. And instead, she offered to write a letter summarizing our conversations and her assessment of my mental health. And to their credit, the transplant clinic accepted it, but it was a lot of trouble and it set things back and it took some time. The other story is, I think, more fun. They have a question. Well, they have two questions. One is, do you drink alcohol? And I said, yes, occasionally, because I do. And the other is, have you ever, ever used recreational drugs? And I said, yes. They don't say how often or how recently or in a state where it was legal. And so there was nowhere for me to comment that I'd smoked pot and had some edibles on a vacation in Colorado three years ago where this is legal. I just kind of looked like a drug addict to them. And that was a big deal. They demanded that when I come up for my medical exam, I see a substance abuse counselor. They didn't have any room in their schedule to work me in to see a substance abuse counselor, capacity constraint on their part. And so then they asked me to fly back from Kansas City to Rochester, Minnesota on a separate trip. So we're talking separate airline trip, separate overnight hotel stay, two more days out of my schedule for a one hour visit with a substance abuse counselor. I offered to do that on Skype. That was before Zoom. They said, no. I offered to do it locally and fax them the results. They said, no. I offered to do a pee test, a hair test. They said, no. They were very rigid in the way they viewed this problem. Now, as you all know from reading the book, I talked my way out of it because I'm a talker and probably because I am a white, well-educated, upper middle class woman who just was pretty adamant that this was absurd. And in the end, they did remove that restriction. But I've always wondered, and we do talk about it in our book, what if I had been a 30-year-old Black guy with dreads or a single mom working at McDonald's with three kids? Could those people have talked their way out of it? Or would they have been hitchhiking to Rochester, Minnesota to try and save the life of a loved one? There's some pretty absurd and archaic stigmas around mental illness, certain kinds of drug use. I don't think intravenous heroin users should be donating organs, but pot's legal in 23 states, and they didn't ever ask how much liquor I drank. So I think we've got some old-fashioned things going on.

Tyler Gibb

That's really interesting, especially with, as you mentioned at the end, that recreational marijuana is being legalized across the country and increasingly you know more states moving uh moving to the future i i would expect them to do that as well so john my question for you is what were the physicians doing were they trying to protect themselves against in in getting into the weeds about martha's use of marijuana and her i wouldn't even say mental health concerns just the fact that she had spoken to a counselor at multiple points in her life i

Dr. John Lantos

think it gets back to this skepticism about the motivations of Living donors generally, but particularly people who want to donate to a stranger or someone they don't know well, those grow out of doctors' concerns that they're going to harm this person. And so to have a donor commit suicide after donation would be a terrible outcome for a transplant program. They all, or at least the good ones, err on the side of extreme risk-averseness. in making choices about permitting someone to donate. And to be clear, anybody has the right to volunteer to be a donor, but the transplant center also has the right to say no. So if they decide and they have a formal process where they consider all the information that they deem relevant, They have a committee that meets, and if that committee says, we're not accepting you as a donor,

Martha Gershun

you're

Dr. John Lantos

done. So those committees consider medical factors like hypertension, like diabetes, other things, and they also consider psychological factors. And so in this case, I think that's the concern.

Devan Stahl

It's an interesting concern because on the one hand, right, you would want to look out for... mental health issues that would preclude somebody from making wise decisions. On the other hand, I think seeing a therapist is often the sign of somebody who's mentally healthy and recognizes the importance of their mental health. So it's sort of a bizarre kind of trigger for that sort of scrutiny. Had she had a lot of issues and never talked to anybody about them, she might be actually in a less well-positioned to make this kind of decision. And yet the trigger of I've seen a therapist ever It just seems so incredibly paternalistic. Is that how you felt about it, Martha?

Martha Gershun

I did. I was mightily offended. I'm just old enough, I'm in my mid-60s, that I remember in my 20s, people, if they saw a therapist, didn't say so. Or you were afraid that you could never be appointed to the bench if you were a prominent attorney looking to be a judge. Or you were afraid, we saw politicians get... derailed about that. Those days are long over. And I will tell you two really interesting things came out of the book, unexpected and unrelated, I think, to direct kidney donation. One of them is because I disclosed that I've struggled with my weight my entire life. Many people have written to me about that, not about kidney donation, but that so few people disclose that weight is an issue. And a lot of people, particularly locally, wrote to me and asked me the name of my therapist because they wanted an appointment too.

Devan Stahl

Besides these sort of initial red flags that came up that seemed so archaic and arbitrary, there were so many instances in this book when I became so frustrated for you, Martha, because of the incredible hoops that you, this amazing person who wants to donate a kidney, were subjected to in order to fulfill the requirements. Once it was decided you were a match, all the things that you had to do, time and energy and money, to make sure that you were sort of upholding your end of it. So what were kind of the surprising things that came up on your journey that you didn't expect?

Martha Gershun

It took me a while to understand that what I was doing was pretty complicated because it was an out-of-town donation. I'm in Kansas City, the Mayo Clinic is in Rochester, Minnesota, it's six hours away. So everything we were gonna do was gonna be a little more difficult than if I'd been donating in my own backyard. But that being said, the system is set up to understand two kinds of things, maybe many things, but two kinds of things as it relates to this. One is a patient. When you get to the hospital, we wanna take really good care of you. And I have to tell you that the Mayo Clinic did an extraordinary job of that. My health was already always primary concern. The surgery went extremely well. My pain was managed very effectively. That part was A plus. But I'm also part of the supply chain. I am a living, warm incubator for this thing called a kidney, which they need to get into somebody else. I'm kind of like a pig's valve on the shelf or the metal plate that they're going to put in somebody's ankle. So the system is not well set up and has not been well thought through for a patient who is also a part of the supply chain. And the other reason that gets complicated is a patient like me, who's trying to do a good thing for somebody else, doesn't, I think, have the same patience or fortitude as a supplicant to the system. I didn't come to the system saying, save my life and I don't care how long the line is, how many times you put me on hold. how many times I have to drive up there or what trouble you put me through, save my life or save the life of my loved one. I'm saying, I'm trying to do a nice thing that's going to save society money because kidney transplants are cheaper than dialysis and make money for the transplant center because they make money on this and save the life of this woman I've never met before. And you guys are making it

Tyler Gibb

really... hard for me.

Martha Gershun

So one reason we decided to write the book is I think John got tired of me bitching about it and said, let's see if we can't make some sense of that. Full disclosure, I should probably say I have an MBA from the Harvard Business School and a career in customer experience and service operations. So they kind of picked the wrong person to mess around with. This has been my career and my academic interest for a long time, but there were several points in the process. where they made me do really stupid hard stuff that somebody else on their end who's paid could have done it. I'm going to tell you one quick story. We call it the dry ice saga. I know you all read it in the book. Within 30 days of donating an organ, you must, by federal law, be tested for HIV, AIDS, and hepatitis. We don't want to give an infected organ to a recipient who's going to start taking immunocompromising drugs to preserve an organ. It would kill them. I get that. I'm on board with that. It's a good law. It turns out that the blood for that test has to be shipped on dry ice. You can't just put it in the mail. So the clinic sent me a box and asked me to get my blood drawn at my doctor's and to find dry ice and mail it to them. So I don't know about you guys. I don't know about the people listening to this podcast, but finding dry ice and mailing it were not things in my experience set. And in fact, all in, I added it up. It took me two full days of my time at my billing rate to figure out where you purchase dry ice, how you pack it safely, because it's actually an explosive substance and it's controlled, and get my blood sample up to the clinic within 30 days. What I kept thinking over and over, and I thought this so many times in this process, I'm retired. I have time. I'm affluent, I have money, I have a car, I have gas in my car, I have a supportive husband who is on board with this, I speak English as a first language, I'm highly educated, I can read directions, I can call people on the phone. Does that mean that a low educated under-resourced person, maybe someone who doesn't speak English as a first language is unable to jump over these hurdles and maybe not save the life of their mother or their sibling or their cousin. It doesn't have to be this hard. I will also say John has a really good phrase for this, and I'm not going to take away his thunder, but he can tell you how he helped me start to think about how we might think about living organ donors.

Dr. John Lantos

Yeah. I mean, what became apparent through this is that the hospital just hadn't thought through some of the issues that would come up. particularly in a case like this, where the donor lived a distance away from the hospital. Many of these issues probably wouldn't have been problems if you'd lived in Minnesota and they wanted a blood test. You'd have gone to the Mayo Clinic and they'd have drawn your blood. And I mean, it would have been an hour of your time, but it wouldn't have been two days and your own research trying to figure out this arcane process. They could have accepted a blood test done at KU. I mean, it's not like HIV tests or some arcane procedure that only the Mayo Clinic knows how to do, but it just showed a sort of lack of attention or lack of recognition. that what they were asking was burdensome. That is the sort of thing that, sad to say, hospitals feel comfortable doing to patients all the time. But there is a group of people for whom hospitals don't do that, and those are their valued donors. You've given a lot of money to a hospital. They tend to have programs where if you show up for a clinic appointment, someone from the development office will meet you at the door and escort you to your clinic appointment, treat you like a very important person. Someone who's contributing to the hospital mission and deserves a little extra attention and service. That raises equity issues all of its own. But in the book, we propose that kidney donors ought to be treated like money donors,

Devan Stahl

like philanthropic donors. And

Dr. John Lantos

perhaps there should be a wall of appreciation that has their names and perhaps... There should be someone assigned to make sure that they aren't asked to burden themselves in trying to give a valuable donation to the hospital. That's one of the conclusions that we come to in the book.

Tyler Gibb

So throughout the process, Martha, there were, like Devin said, a number of hoops that you had to jump through and seemingly artificial or unnecessary barriers created by the system or by the process itself. Were there points in which you thought, that's enough, I'm done, I'm going to back out?

Martha Gershun

Never. I am a really determined person. And if anything, the more barriers just made me more determined to prove this could be done. But I always want to put that in the context. I am well resourced. I am, other than my consulting clients, I am retired. I can't tell you that I would have pushed through 20 years before when I was a working mom with two kids at home and a husband with a high pressure career. And I'm confident I could not have pushed through if I didn't have money in the bank, gas in the car, some just really practical things. So it's one of those times in my life when I was just really aware that privilege made something possible. I will say before I met Deb, this was all pretty abstract. You know, they called and said, you're a perfect match for this stranger. And you're like, whoa, this is something very exciting. But after I met Deb, she and I had lunch not long after we found out we were a match. I was never giving up after that. To give up, in my mind, would have been the functional equivalent of sentencing this lovely woman to death. And once she was real to me, I felt like her life had become my responsibility. If they at any point had told me, you know, you can't do this, it's not safe. If they had crossed me off the list, I would have been really sad and understood. But I wasn't going to take myself off. the list. It's an extraordinary privilege to be in that position. And I feel like the system needs to acknowledge that because kidney disease disproportionately affects low-income people, people of color, the very people without the resources to push through the way I did. And so I think the system needs to understand that if we want to save the lives of the people most impacted by kidney disease, we need to lower the barriers.

Tyler Gibb

Another aspect of your story that's a

Tyler Gibb

Like you knew her name and you knew kind of what community she was in because of the article that you read. Is that true? Is that fair?

Martha Gershun

I have often wondered, and John asked me this question a lot, would I have been as compelled if I had read about somebody very different from me? Deb was Jewish. She has a couple of kids. She's a few years younger than me, but we're basically in the same demographic world. She now lives in Fort Lauderdale, Florida. She doesn't live here in Kansas City, but a very similar background. Had I read a story on Facebook about a 30-year-old Muslim man, would I have felt that pull? And what I have to honestly say is I don't know. I don't know the extent to which we were similar spoke to me, but I suspect it mattered.

Dr. John Lantos

I think you're being a little too generous with yourself. I mean, you've read about those people all the time.

Martha Gershun

You're right. And I never called. I never, ever called. This woman seemed like somebody I was going to try and help. Yeah, I think that's right. The other thing John and I've talked a lot about, and I think it's the tougher question, after I met her, what happens if I don't like her, right? I mean, you read a newspaper article about somebody, how much do you really know about them? What if when we met, I found our politics were very divergent? This was a very polarized time in our country, and I had very strong views. What if I found out that she supported candidates or policies I found abhorrent and was very vocal about them? Would I still want to save her life? So an interesting question. When I met her, I happened to adore her. But what good luck was that?

Devan Stahl

Martha and John, this is such an interesting story and I don't want to give away all the twists and turns that happen in the book because I want people to actually read the book. So I'll say it's compelling. It's super accessible. It's easy to read. You don't have to know anything already about organ donation or the medical system in order to appreciate and understand it. Are there any final thoughts from either of you, takeaways or things that you really want people to know about the process or about the book?

Martha Gershun

What I want to be sure people know is that there were a lot of obstacles and a lot of barriers. I have been glad every single day since I first made that phone call that I was chosen to be Deb's donor, that I was able medically and psychologically to be Deb's donor. And it makes me feel special every single day that someone wonderful is alive in the world besides my own children because of something my body could do. And the only complaint system emphasis that I've wanted to promote is we should make it easier for more people who can safely do that to do that.

Devan Stahl

Well, thank you so much. So the book is called Kidney to Share. We'll put a link to the book on our website.

Tyler Gibb

Yeah, again, congratulations on the book.

Dr. John Lantos

Thanks so much. Have a great day, guys.

Devan Stahl

For more information about today's episode, show notes and links to articles and topics discussed, please head over to bioethicsforthepeople.com. Special thanks to Darian Golden-Stahl for all the podcast-related artwork and Christopher Wright for composing and recording all the music you've heard here.

Martha Gershun

Yes, do completely. We already know I'm a crazy pothead, so go for it.

Devan Stahl

Well, I'm definitely keeping that line in. We're still recording, so.