BROADCAST OF AUTHORS MARTHA GERSHUN AND JOHN LANTOS MD

James Myers

Hello, everybody. Welcome, welcome, welcome. Tonight, your Uncle Jim has something extra, extra special for you. I want to talk to you about a couple of authors and their new book, Kidney to Share. There's the book. Go right out to your bookstore and buy one. You can also get this on Amazon. It's a very, very interesting book that we're going to talk about tonight. And Martha wrote a very nice dedication. to me in my copy of the book. I thank you for that, Martha. On September 28th, 2018, Martha Gershon donated a kidney at the Mayo Clinic to Deb Porter Gill, a woman she met after reading about her need for a new kidney in the Kansas City Jewish Chronicle.

James Myers

Gershon's newest book, Kidney to Share, published by Cornell University Press, 2021 and oh by the way if you look in the comments there's all kinds of reviews of the book there's links to where you can buy the book there's links to amazon there are videos that Martha and John have done together there are videos where Martha is speaking there are videos where John is speaking and all sorts of links where you can look up our authors and get more information so you know your uncle Jim's taking care of you so be sure you check that out At any rate, Martha co-wrote this book with a medical ethicist and pediatrician, John Lantos, MD, chronicling this journey and exploring medical scientific and ethical issues surrounding transplantation. They have given presentations at more than 30 transplant clinics, medical schools, and bioethics centers about the issues raised in this book. And I tried to post every damn one of them. So please check it out. A little bit about our our authors martha gershon is a non-profit consultant writer and community volunteer with over 40 years of leadership experience in fortune 500 companies startup ventures and non-profit organizations she currently provides executive coaching marketing board development and strategy consulting services to local and national non-profits She graduated with a BA cum laude from Harvard University, and that wasn't enough. She had to graduate from Harvard again with an MBA from the Harvard Business School, where she studied marketing, service operations, and customer experience. She earned a graduate diploma in economics from the University of Stirling in Scotland, where she was a Rotary International Fellow. Dr. John D. Landis is a pediatrician and a bioethicist. He has served as president of the American Society of Bioethics and Humanities and the American Society of Law, Medicine, and Ethics. He was a founding director of the Children's Mercy Hospital Bioethics Center, where he held the Glasnap Family Foundation Chair in Bioethics. He has served as an advisor to the American Academy of Pediatrics, the President's Council on Bioethics, and the National Health Center. He has published hundreds, and I do mean hundreds, of papers on topics in pediatric bioethics and was named one of the best pediatricians in the Midwest by the Ladies Home Journal. Dr. Lantos is a prolific writer. I mean, books, articles. Lots of stuff. That's all in the comments too, by the way. Dr. Lanto's most recent book is The Ethics of Shared Decision Making, which explores current approaches to communication between doctors and patients as they work together to make tough decisions. What makes our discussion so interesting and unique this evening is the way that the book is broken down. The book is broken down into chapters where Martha is describing her experience as a living, altruistic donor. And Dr. Lantos then comments on the ethical and medical issues that are raised by the things that went on with Martha while she was trying to donate a kidney to her friend. So

James Myers

excellent reading, by the way. Most interesting book on kidney donation I've ever read. And your Uncle Jim has read a few, OK? From the author, Kate Watson, quote, Reading this lively book is like eavesdropping on an honest exchange between erudite friends. The insight of the authors into the collective ambivalence about living organ donors is enacted in the medical maze they must navigate. This is revelatory. In other words, lots of revealing. So tonight, our discussion is centered on the scientific and ethical complexities of modern medicine and living kidney donation. Please give a warm welcome to our friends, Marcia Gerwin and Dr. John Lantos. How's everybody doing tonight?

Martha Gershun

We're great. Thanks so much.

Dr. John Lantos

Doing really good, Uncle Jim. Thanks for having us.

James Myers

Oh, thank you for coming. Did I state everything correctly in the introduction? Is there anything that either of you wish to correct?

Dr. John Lantos

100%. Okay. My first one?

James Myers

Let's start with Martha, ladies first. Please tell us a little bit about where you grew up, your educational background, and your employment experience.

Martha Gershun

Well, gosh, so I'm getting old, so that's a long story. I'm going to make it really short. I was born and raised in Southern California. I'm a California girl, and I left after high school to go east to study in Boston. I pursued a business career because... organization, making things work, getting things done has always been interesting to me. And those are some of the themes that are going to carry through here in the book. And I had a long career in corporate management, nonprofit startups, and eventually nonprofit leadership, including a couple in the medical sector. And I retired in 2017, which really is the preface to this story, because donating a kidney takes so much time and so much effort. I don't think I could have done it while I was working full time, raising two kids. It was something that I could do in retirement. So I think in a lot of ways, this story starts when my paid for work career ends.

James Myers

Okay. Thank you, Martha. John, tell us a little bit about where you grew up, your educational background and employment experience.

Dr. John Lantos

Sure. I grew up in Western Pennsylvania, a little town called Johnstown. 60 miles from Pittsburgh out in the mountains.

Dr. John Lantos

Went to college in New England, went to Brown University in Providence, Rhode Island. Then medical school, came back to Pittsburgh. After medical school, did a pediatrics residency in Washington, DC. And while I was there, there was a national controversy about Letting babies die. There was a baby with Down syndrome who needed an operation to save his life and his parents didn't consent. It led the Reagan administration to issue new regulations trying to prohibit this. It was something that I got caught up in because I was working in neonatal intensive care units and taking care of babies like this. And that sparked my passion for medical ethics. owed the government a couple years because they had generously paid for my medical school, so I paid them back by working in southern West Virginia as a primary care doc, and then found one of the first fellowships in medical ethics at the University of Chicago. So I went out there to

Dr. John Lantos

really delve into some of these medical ethics issues intensely for a year. for a year and a half, and then they hired me at University of Chicago, so I stayed there for 20 years. But my passion was pediatric bioethics, and Children's Mercy Hospital in Kansas City made an offer to allow me to come down there and start a pediatric bioethics center based in the Children's Hospital. So I did that for another 15 years, and then just retired recently. I am, like Martha, retired and writing books.

James Myers

All right. Okay. Let's start with Martha. Martha, I saw a post on Facebook recently where you and Deb Gill are about to celebrate your fourth anniversary of your kidney donation on September 28th, 2018.

James Myers

and Deb's kidney transplant at the Mayo Clinic in Rochester. Please tell us, how did you discover that Deb needed a kidney and what made you decide to help?

Martha Gershun

You know, it's one of those coincidences that you have to wonder if there's a higher order operating in our world. I was sitting on our bed reading the Kansas City Jewish Chronicle, which is a weekly in our community that I read every week for the past 20 years. And there was a front page article about a woman who needed a kidney. I didn't know her. In fact, she didn't even live in Kansas City anymore. She had been raised here, but was now living in Fort Lauderdale, according to the article. And it said Deb was going to die without a new kidney. And anybody who might be interested in seeing if they were a match should call a phone number, 1-800. This really resonated for me.

Martha Gershun

Cousin Anne in Omaha, Nebraska, one of my very favorite cousins, and I have a lot of favorite cousins, had PKD and had needed a kidney 20 years before. I wasn't a match. Anne and I aren't blood relatives, and there was no opportunity for me to help her. But a very dear family friend donated a kidney, and Anne lived another nine years of time that we were able to spend together, family celebrations, visited us in Kansas City. We spent time with her and her family in her home in Omaha, Nebraska. It was very, very meaningful to me. And

James Myers

at the time,

Martha Gershun

it sort of stuck. Maybe someday this is something that I can do. As I said before, I had a busy corporate career. I was raising two kids along with my husband. It wasn't something I actively pursued. But when I read this story, five months after I'd retired from my last nonprofit job, I thought, I could do this now. This is the right time. I also knew it's really hard for a stranger to donate to a very specific other stranger. For somebody to donate altruistically to the pool, you just have to be healthy enough. But for Martha to match Deb, who is not a family member, is about a 1 in 100,000 chance. So I always tell people, I didn't call to donate to Deb. I called to enter a lottery. for a one in 100,000 payoff to be able to donate to Deb. Now, it turned out I was a near perfect match, which is really very extraordinary. Only two people responded from that article and called the Mayo Clinic. One of them was not even a blood type match, and I was a near perfect match. So Deb, who in some ways is now closer to me than any other person on earth, except my biological children, was a complete stranger. that a newspaper story matched me with.

James Myers

Okay. And just for the record, Deb was an insulin-dependent diabetic. She had a kidney pancreas transplant in 1999. By 2017, 18 years after, her kidney was failing. It's my understanding that she would not live the average wait time for a deceased donor five to 10 years, something like that. And she needed a living donor right away. Is that kind of the gist of what that article was about?

Martha Gershun

That's a pretty good description of the story. Deb had received a cadaveric kidney pancreas transplant and that had lasted 18 years. The pancreas are still going strong. 18 years is a long time for a deceased donor kidney to keep going. Deb took really good care of it. But when it started to fail, she wasn't going to have very long. She was already medically fragile. The pancreas transplant added extra complications. And in fact, a lot of people ask me why we didn't do this in Kansas City, where I lived, which would have been so much simpler. If I have any advice for anybody who wants to donate a kidney, do it in the city you live in. It's much harder to do it in my case at the Mayo Clinic, which is six hour drive away. And for Deb was an airplane flight away. But she was listed, she meant to be listed at one of the transplant clinics in Kansas City, and she was rejected because of the earlier pancreas transplant and some other underlying medical issues. And that really shook her. And so instead of shopping a couple of the other places in Kansas City, which may have accepted her, she jumped right to the number one kidney transplant program in the country, which is the Mayo Clinic. They do more than anybody else.

Martha Gershun

Her situation was fragile and not immediately life-threatening, but she wasn't going to make it as long as it takes to get a cadaveric kidney.

James Myers

Okay. Why did you decide at this point in time to donate? What was going on in your life that led you to believe this was a good situation for you?

Martha Gershun

You know, I do think a lot has to do with being recently retired. And I was recently retired. The last half of my career was in the nonprofit sector. I've been the executive director of an organization that helped abused and neglected children, which had given great meaning to my life. And in retirement, I was sort of looking for the next big project. I served on some boards. I did some hands-on volunteer work. My husband's nonprofit agency runs the largest food pantry in Kansas City. I was working there one day a week. But I was kind of looking for a big project. So when this one walked across my radar, I thought, Anne, kidney, retirement, project, yes. It kind of just all added up. I think there's some very heroic people who do this who still work full-time, who are still raising school-aged kids, who may be doing elder care for a parent. I was not one of those people. I was in a very comfortable place that meant I could go out on a limb a little bit.

James Myers

there's something i read that you tried to donate uh on one occasion before something about a bone marrow transplant can you tell us a little bit about that

Martha Gershun

that's part of the timing of this story too 20 years before uh someone where i worked um was looking for a bone marrow donor for his granddaughter and so a whole bunch of us signed up to have, at that time they used blood draws. Now they do a cheek swab to see if we might match. And if it's one in a hundred thousand for kidneys, it's about one in a million for bone marrow. That's a much tighter match. It's much harder. I did not match for that child, but I went into the pool and about a year later, I got a letter, because that was before email, saying that I was a probable match for a six-year-old little girl with aplastic anemia. And in fact, further testing showed that I was a perfect match. I must have this really weird blood. I seem to match for people.

Martha Gershun

I was very excited about that opportunity. It's easier to donate bone marrow than it is to donate a kidney. I think I could have done that while I was working full time. As it turned out, they never called me to do it. We don't know if she got too sick, if she died, if they found a different donor for her, they never called. And that just kind of sat in my life for a long time, I thought someday they're gonna call. And I think this little girl is seven, this little girl is 10, this little girl is 15. They're gonna call me before her senior prom.

Martha Gershun

They never did. And when I turned 60, I got a letter from the bone marrow donor registry. You don't really time out on your ability to donate a kidney. I mean, you can get too old to survive the surgery or the anesthesia, but your kidney doesn't get too old, but your bone marrow gets too old. The very best bone marrow donors are in their 30s and 40s. So you get this nice letter saying, thank you for your service to the bone marrow donor registry. You fulfilled your obligation and we're taking you off the list. And that had just happened about three weeks before I read Deb's story. So in some ways, this longstanding thought that I might contribute to the transplant community in this blood marrow way was off the table. And then. there's this article about maybe another way to do it. There are many coincidences in this story. You know, my father used to say, there's no such thing as coincidence. You just look back and you tell that story. That's how you write the story for yourself. But in my case, it seemed like many things were coming together to make this both attractive and possible.

James Myers

Okay. John, two questions back to back. First, our friend Ken Pressler from Kidney Solutions has checked in, and he's asking about why a preemptive kidney transplant is preferable to going on dialysis and then receiving a transplant. And ethically, what are your thoughts about that?

Dr. John Lantos

Yeah, I was thinking about that. Thanks, Ken, for that question. When you were talking about what would have happened to Deb, I mean, I think she could have gone on dialysis.

James Myers

And

Dr. John Lantos

unlike, say, a liver transplant or a heart transplant, dialysis can keep people with kidney failure alive for years or even decades. I think she could have. Dialysis is a pretty brutal therapy, though, in terms of the burdens it places on people. It's hard to do. It's not as good as transplants for long-term outcomes. And the longer you're on dialysis, the worse the outcomes become, even when you get a transplant, because being on dialysis is an imperfect replacement for kidney function, and it's burdensome.

Dr. John Lantos

It would be reasonable to make the choice they had made and to seek a living donor. If she hadn't, she probably wouldn't have died. She probably would have been on dialysis. And eventually, these days, probably in five or 10 years, would have risen to the top of the list for cadaver transplant.

James Myers

Okay. The other question that I have, John, in the book, in the introduction to the book, you talk about the medical ethics of taking a healthy living donor who doesn't need surgery for themselves and undergoes this type of surgery. And you contrast it with the oath that all doctors take to do no harm. Can you discuss that ethical issue with us, please?

Dr. John Lantos

sure so uh i mean i think we tend to forget today because transplants had become so widely accepted just how radical a proposal it was when doctors first said hey we got a great idea here uh i got a patient who needs a kidney uh initially uh it was uh twins uh they have a twin brother sister I'm going to take a kidney out of the healthy twin and give it to the sick one. And many surgeons said that's completely unethical. That's completely immoral. It violates the fundamental principle of medical ethics. Do no harm. Now, I mean, in the ordinary treatment of people, we do harm all the time, especially surgeons, but also, you know, chemotherapy is harmful. Cardiac catheterizations are harmful. Even antibiotics can be harmful. But we generally are doing it with the belief that for this particular patient, the benefits outweigh the harms. With transplant, it's hard to argue that the benefits for the donor outweigh the harm. Surgery is dangerous. And so when people first started doing this, one surgeon who opposed it said, This is crazy. This could be the first operation in history with a 200% mortality rate. If you lose the donor and you lose the recipient, you'll have

Dr. John Lantos

killed a perfectly healthy person for the benefit of another. It violates not just medical ethics, but sort of Kantian ethics of using someone as a means to an end. At the same time,

Dr. John Lantos

the compelling need of somebody who needed a transplant. Transplant started about the same time dialysis was being tried, but transplant came first. So there was no available life-saving therapy that you could have used instead of kidney transplants. And people said, first with competent adults, I'm a competent adult. I'm allowed to make this decision. It means so much to me to try to save my sibling's life. ought to let me do that. And some courageous doctors were willing to try. And in the early days of transplant, the outcomes weren't very good. So the harms to the donor were not really outweighed by much benefit to the recipient. Most of the recipients in the early days, this is the 1950s, before doctors understood histocompatibility and immunosuppression, before cyclosporine and all the drugs that we have now, Most of the recipients rejected the kidney, got graft versus host disease, got septic and died horrible deaths. And so you subjected this healthy person to a risky operation in the hope of benefiting someone else and someone else didn't benefit. So there was enormous controversy that only started to wane as the outcomes for recipients got better and

Dr. John Lantos

data started to accumulate that the risk to donors were extremely low, not zero. There have been donor deaths and some long-term health problems for donors. But what it led to, and this may be getting to your later questions, was a program to do the sort of careful screening of donors that Martha describes undergoing in the book.

James Myers

okay um martha i i want you to talk about your first contact with the mayo clinic and how they reacted to your call and what you expected

Martha Gershun

well this i think is a little bit um a story of their poor customer service and my naivete kind of coming together having spent parts of my career in sort of pseudo sales functions where I was trying to convince people to do something, whether it was fundraising or sign up for a graduate program at a university. I always had the feeling that if someone called you who was a lead, a warm lead who wanted to do what you wanted them to do, that you immediately tried to convert that warm lead to a hot lead. somebody calls to donate money to your nonprofit, you work really hard to get them from five bucks to 10 bucks to 20 bucks to leaving their entire estate at their death. That's kind of your job. So that's my mentality about what happens when you call an 800 number for someone who's asked you to do something. So when I called the 1-800 number for the Mayo Clinic,

Martha Gershun

my view was that sales mentality combined with i watch way too many medical procedurals i've spent my life watching gray's anatomy in chicago hope and chicago med and the good doctor i kind of feed off this stuff i figured somebody would go oh my god we have somebody for deb quick get the i don't know what get get the cart get the needle get the something

Dr. John Lantos

the helicopter

Martha Gershun

it was nothing I mean, nothing like that. I did get a live person. So credit, I got a live person. I got a very live, very bored receptionist who manned the phones for the transplant clinic. I said, hi, I'm calling. I'd like to be tested to donate a kidney to Deb Porter Gill. And instead of saying, oh my God, that's the most generous thing in the world. We're so glad you called. She said, okay, fine. Have you gone to our website? I said, no, I called the 1-800 number that was in the newspaper. Here's our website, www.blah, blah, blah, blah. Please go to the website. Please fill out the questionnaire. Thank you very much. Goodbye. Click. And I got to tell you, I went a little kind of lukewarm. I mean, I wasn't not going to try and save Deb's life because this woman didn't have a better customer service attitude. And I'm sure she was busy and she had a lot going on and she hadn't been trained to do anything else. But if I were making that very long list of things transplant centers could do, to get more living donors, to stick with it from initial inquiry all the way to donation, and John can give you some data about how rare it actually is. It's rare to make the phone call and it's much rarer to go from the phone call to transplantation. They might start with a little warmer approach to that initial contact. Wouldn't it kill her to be cheerful?

Martha Gershun

Being cheerful costs nothing. That's the name of my next book.

Dr. John Lantos

Oh, that's not true. Disney and Marriott invest in it. You're the business person. Teaching people to be cheerful is expensive.

James Myers

Martha, I understand that in two weeks you received a call from Alisa at the Mayo Clinic. Can you talk to us about that conversation, your blood type, next steps, all that kind of thing?

Martha Gershun

So I did go to the website and I did fill out this long, it's a health questionnaire, essentially. And one of the questions they ask is, if you know your blood type, could you please tell us your blood type? And having been listed on the bone marrow donor registry, I absolutely knew my blood type. I'm B positive. I know it's relatively rare, about 8% of the American population.

James Myers

I filled out the whole

Martha Gershun

health questionnaire. So Lisa, who is, she's really fabulous. Now, Lisa has got customer service down pat. Lisa called... She's a nurse coordinator. She works with potential donors and said, you are the right blood type. This woman you're trying to match actually is B positive. So like that's already a thing, right? 8%, this is kind of rare. The next step would be for us to mail you a box, a kit to take to your doctor and have your blood drawn to send up to us to do more advanced tissue typing to see. Being a blood type match is insufficient. There's a lot more matching that has to go on. But before we invest in you, she never used those words, but before we invest in you, before we spend the insurance company's money to send you that box, we have questions. Okay, what are your questions? We have concerns. It was concerns. The first concern

Martha Gershun

is that I said on the form, the question was, have you ever sought the services of a mental health profession? So I would like to say ever is a very big word, but yes, I actually have a therapist that I see from time to time when I'm trying to make big decisions, very influential in helping me decide to retire at the age of 60. So I said, yes, that's a big red flag in this system. So the question Lisa asked is, If we send you this kit and your blood matches, will you consent to sending us all your mental health records? That seemed like a big ask, but I was thinking, sure. Didn't seem like another reason not to let Deb get my kidney. So yes, if you send me the box and my blood matches, I will send you my mental health records. Okay, good, check. Here's the next one. It's a tougher one, she says.

Brief crosstalk / diarization fragments

you

Martha Gershun

answered the question have you ever used recreational drugs yes you said you have used recreational cannabis i said yes i have used recreational cannabis i may live in a state where it's illegal but it is legal at the time it was legal in eight states in the district of columbia now it's legal in many many more um so yeah i was on vacation with my husband went to colorado we had a good time i smoked a joint or two and we're not even talking about college yes Well, if we send you the box and your blood is a match and we get your mental health records, will you agree to talk to a substance abuse counsel? Okay, this seemed like really over the top, having spent a good part of my career working with kids in the foster care system, parents with substance abuse issues. I kind of get the whole substance abuse thing, but I've always viewed it as very far from my life. and talking to a substance abuse counselor seemed a little invasive. But it also, again, seemed like an hour out of my life to possibly give Deb years and years of healthy life. So I said, sure.

Martha Gershun

Little did I know that each of those things would turn out not to be simple asks. It turned out that my therapist was unwilling to send my mental health records up to the Mayo Clinic. She felt that was an inappropriate request. And that since I was not the patient and she couldn't be sure my medical records wouldn't get matched with Deb's, though I think there's some HIPAA protections, I'm sure, she was unwilling to do that. She was willing to summarize some of our conversations and say that I had no diagnosis and send that up. But we kind of had to navigate that. The pot thing turned out to be a whole lot harder because it turns out that the Mayo Clinic doesn't have enough substance abuse counselors. And I think I know why. It's because they make everybody talk to one. Oh my God, if you funnel all your surgical patients through that one place, you're never gonna have enough. So when it was my time to go up for my medical evaluation, the pretty intense medical three days, I had 25 appointments, nephrologists, cardiologists, lung X-ray, financial counselors, social worker, donor advocate, literally packed three three days of appointments mayo had no available substance abuse counselor appointments during the time i was there and they wouldn't do it virtually i think now there may be more inclination since the pandemic and zoom and telehealth and things but they wouldn't do it virtually then they asked me to make a separate trip six hours from my home 12 hours round trip spend the night in a hotel

Martha Gershun

in order to accomplish this little extra task, which they had decided I needed, even though I knew darn well I didn't need. So turned out to be a really big obstacle, something I've become more upset and offended by since researching the book with John and being out and talking to more folks, kind of realizing that that was a big ask and it kind of annoyed me. And in the end, I didn't do it. In the end, I talked my way out of it. You can kind of guess how I might have done that. But it was pretty clear to me that being 60 and affluent and well-spoken and advocating for myself and white probably got me through that. And asking that very question to 35-year-old black guy trying to save his mother's life might well, he might well just bail right there. You know, you tell a black kid from the inner city, that we won't let you before unless you talk to a substance abuse counselor, you could really be throwing a barrier in their way, even if it's no bigger issue than it was for me. So over time, I've become more offended by that ask in the ways that I think it could be classist, I think it could be racist, I think it could be a barrier based on socioeconomic factors. The only reason they let me out of it is because I looked clean to them. And that's a pretty subjective idea.

James Myers

okay john um talk to us a a little bit about this tell us about the history of live altruistic kidney donation from a a non-relative why these people are always constantly being questioned about their their motivation why do they put up roadblocks for people that are trying to generously donate a kidney to someone else? Are there legal issues, competency issues, immunosuppressant therapy type issues, tissue matching? Why do they give people such a hard time?

Dr. John Lantos

Yeah, great. And I love the way you're doing this, going back and forth, because it's very much the way we wrote the book,

James Myers

where we

Dr. John Lantos

started with the experience and then talked about some of the background. So this one picks up on what we were talking about before, about how surgeons were initially reticent to

James Myers

do

Dr. John Lantos

any procedure on a living donor. And in the early days, those were all family members. So even for a family member who had an obvious psychological payoff in saving a loved one, people were worried about whether A, whether somebody could really consent to this, and B, whether it was safe enough that it was ethical to subject this healthy person to risk. But family members eventually, as I said, the outcomes got good enough that it came to be accepted that this was ethically

Dr. John Lantos

appropriate to do. But then it started expanding beyond biologic family members. Like what if a husband wanted to donate to his wife or wife to her husband? They're not biologically related, but they're obviously emotionally connected. Well, it wasn't until people started to understand the histocompatibility matching and the mechanisms by which kidneys are rejected. And when the immunosuppression got better, that people started to say, maybe this could work. Maybe if you're not a perfect match, but you're a five out of six match. or a four out of six match. We'll try it. We'll give a little bit more immunosuppression and we'll see what happens. And gradually over time, the outcomes got better with people who were less well matched and therefore less biologically related. Well, if a husband can donate to his wife, why couldn't somebody who's in the same church and wants to save a fellow congregate or somebody in the workplace?

Dr. John Lantos

who's emotionally bonded. And this started pushing the comfort level of the surgeons in the transplant program where they said, you know, how far do we go here? We can understand why a husband would want to save his wife. We can understand why somebody might want to save their adopted child. Church members?

Dr. John Lantos

And then finally it got to situations like Martha's, where somebody stepped forward and said, I want to donate to somebody I've never met. I just read about them in the newspaper. Take me. And the first response of most transplant programs was to refer people to psychiatrists, assuming that anybody who wanted to do that must be crazy.

Dr. John Lantos

all of the psychological benefits that they thought would accrue to the people who were donating to a loved one or to a close friend or to someone in their faith community or someone in their workplace, somebody with whom they had an emotional connection. None of those would apply to somebody who wanted to donate to a stranger. And some of the stranger donors were even less connected with Martha. Martha read about this woman in the newspaper. uh they were in the same faith community they were both jewish turns out they have a lot of other connections some people would come to transplant programs and say i just want to give a kidney use it for anybody who needs it i know there are people on the waiting list i have two uh

Dr. John Lantos

you know it to me it's important that i do anything i can to help people who are suffering take my kidney and um So the doctors really worried about these people and sent them to psychiatrists. And if you go back to the 1980s and 1990s, there's a bunch of articles in psychiatric journals from the psychiatrists who were asked to do the evaluations of these people. And they worked hard to try to uncover psychopathology. And they had two concerns. One was the sort of psychopathology that would make someone want to donate in the first place. The second one was more what would happen to someone who said they wanted to do this because they felt

Dr. John Lantos

a sense of mission, a sense of purpose. They wanted to save somebody's life. And the recipient died. And this, I think, is where the substance abuse question comes in. If somebody's in fragile psychological health to start with, they think it's going to improve their life too. donate a kidney to save somebody else's life and the person they donate to dies, what's going to happen to them? And so one of the tasks for these psychiatrists was to try to predict who might be at risk for depression or worse, suicide, if the transplant didn't go well. And there were even a couple of published case reports of donors when recipients died who killed themselves.

Dr. John Lantos

Turns out, in those cases, in the published reports, they had been evaluated by psychiatrists ahead of time. So predicting who's going to have that sort of catastrophic reaction is an imperfect science at best and maybe pure guesswork. But eventually, the compromise that many transplant programs came to was to say, we can't tell for sure who's doing this for good reasons and who's doing it for psychopathological reasons. But we're going to set up a few screening questions and hope that by doing that, we're going to be able to at least uncover the most egregious

Dr. John Lantos

bad motivations or psychologically worrisome profiles. And maybe that would be a contraindication to allowing someone to be a donor. just the way the medical screening is attempting to find out whether somebody has medical contraindications, all sort of tapping back into this idea that you want to do no harm. And so how can we be sure we're not doing harm to potential donors? We want to make sure they're medically appropriate to donate. We want to make sure they're psychologically appropriate to donate. I think what we learned through Martha's experience is the way this has been operationalized is not very evidence-based or even rational and may increase disparities and discrimination. So that was an important lesson.

James Myers

Doc, as a follow-up type question, do transplant coordinators, pre-transplant doctors, transplant centers in general, explain all of this to their patients or do they just kind of do what martha experienced they're kind of chilly and cold and not real receptive at times what's your experience with that

Dr. John Lantos

i don't actually know the answer to that it's a great question my guess would be just based on my general medical experience i mean i think i doubt that they explain that history very well I'll bet they're not generally cold, but they can be rushed and so might

Dr. John Lantos

race through it. There may be another thing at work here too. I think there's still a little queasiness and qualms about altruistic donors. And so setting up barriers and saying like, how badly do you want to do this? And sort of, I mean, the flip side of it is enticement, which sort of, if you go along the enticement scale too far, you get to coercion. If you go along the careful screening and looking for psychological problems, you can get to discrimination and disparities at the extremes of the scale. But I mean, imagine the opposite of extreme. If Mark had called up, I would have said I wanted to, donated a kidney and they said, oh, we'll fly you up to Rochester and we'll put you up in a four-star hotel and give you a lovely dinner with fine wine.

Dr. John Lantos

Come tomorrow. Many people would see that as inducement or payment. And so it's a little tricky. How much do you encourage? How much do you discourage?

James Myers

OK. Martha. Talk to us a little bit about the first time you reached out to Deb by Facebook and then later in person. Can you explain the circumstances that led to your conversations, what your contacts were like and the kind of things you were initially discussing?

Martha Gershun

When Lisa, it was Lisa called and said, you are a perfect match for this person. I was actually in a coffee shop and I screamed. It had a feeling of winning the lottery, right? I knew this was a one in 100,000 chance. I'd become very invested in the idea of being able to do this. And I felt like somebody had given me an Academy Award. And I said, can you give me your contact information? We need to start planning. I mean, you know, we're now planning one of the most complicated things you can ever do with another person. I mean, wedding planning is easy compared to this. We got to pick a date. We got to get her act together. And she said, no, HIPAA. HIPAA, I can't tell you anything about her. The only reason you know anything about her is you read about her in the newspaper. So I thought, I said, can I find her? She said, yeah, you can find her. I mean, if you can find her, it's okay for you to find her. You know, Deb Porter Gill is a pretty common name. So this wasn't like a simple Google search.

Martha Gershun

But I did go to Facebook to see if I could find her there. And sure enough, there she was. And it was clearly the same woman from the newspaper. Gorgeous, blonde, Florida backdrop, originally from Kansas City. This was the right person. So I sent her a message on Facebook and said, Deb, you don't know me. I read your story in the Kansas City Jewish Chronicle, and I just heard from the Mayo Clinic that I am a perfect tissue type match. And I have been approved to come be medically evaluated to be your kidney donor. I understand if you don't want to have direct contact with me, but if you would like, here's my phone number. I didn't hear anything for 24 hours. And I thought, oh my God, I freaked her out. I've offended her. She's died. I mean, who knows? Phone rang and she said, I couldn't call. I was crying. And I couldn't call. As it turns out, I read your Facebook message on the airplane. I am in Kansas City. I've come to see my parents. Do you want to have lunch? So Deb and I had lunch. It was, I mean, that was scarier than any first date I've ever been to.

Martha Gershun

I don't know why. I wanted to be acceptable. I wanted her to want my kidney. In retrospect, like whose kidney would she not have wanted? But, and I wanted to like her.

Martha Gershun

There are things about a person that if they turned out to be true, it would make it very hard for me. If she were homophobic, if she'd been anti-Semitic, if she'd been mean, I might not have felt as good about this project that I was now embarking on. But it turned out that we were instantly compatible in some really remarkable ways. She's charming and she's funny and... had had a career in the sex crimes unit working with children in the same county where I worked with abused and neglected children, our paths had crossed in some pretty coincidental and interesting ways. And the Kansas City Jewish community is not that big, so we like knew everybody in common. And after that lunch, I just knew that my kidney would be really happy inside of Deb.

James Myers

Okay. John, one of the things that I was cautioned about from IU Health when I was transplanted was not to reach out to any potential living donor, not to have discussions with them. Can you talk about the ethical concerns of talking or meeting with one's kidney donation recipient? And in particular, I'm thinking about your chapter in the book, who owns the kidney in these circumstances. How does that differ between a living, altruistic kidney donor and a deceased donor? Are there concerns about undue influence, people getting paid to donate, that sort of thing?

Dr. John Lantos

Yeah, when was that that you were told

James Myers

that? I was transplanted when I was 50, or I'm sorry, 61, which would have been six years ago.

Dr. John Lantos

Okay. Dr.

James Myers

William Goggins.

Dr. John Lantos

Okay. That's pretty interesting because there has been a big shift in this, as there has been, I think, in most things related to living kidney donation, where many programs now encourage people who are looking for a kidney to

Dr. John Lantos

essentially crowdsource it, go to social media and create a campaign to try to find a donor. I mean, sort of like Ed Porter Gill went to traditional media, newspapers, told her story and lo and behold, she found a donor. So University of Pennsylvania in particular, I think was one of the first, but they have a whole office now within their transplant program that coaches people on setting up Facebook pages and starting a digital media campaign to to try to locate a donor. There are concerns about that. And

Dr. John Lantos

your question's a complicated one. So let me see if I can do both concerns related to living donors and then how it's different from deceased donors. The concerns with regard to living donors basically have to do with disparities and exacerbating disparities. It turns out running a successful digital media campaign to try to locate a kidney takes money and it takes expertise. Not always. Some people can do it. But for starters, you need access to the internet. And that in itself eliminates quite a few people at the lower end of the socioeconomic spectrum. But to run a successful campaign, you also need some savvy, and there are consulting firms now that will help you. There's a parallel to crowdsourcing for medical care, which is a similar sort of thing. It's where you have a medical problem and you need money, and crowdsourcing has become a good way to do that. But it turns out most crowdsourcing campaigns fail dismally because they're not well done, and the internet's a brutal and competitive place. So getting your story to the attention of the people who need to see it is difficult. And there's a whole science now about how to do it. The people who are experts charge a lot of money, and that can exacerbate health disparities. It's also sort of a beauty contest. That is, if you're the right sort of person,

Dr. John Lantos

maybe attractive, maybe white, maybe able to put together

Dr. John Lantos

a tug on your heartstrings sort of video, you might be more likely to do it. Nice comment from Roberta Reed. This is another example. It's not just transplant programs. The National Kidney Foundation is also trying to help people, in part because of this tension that we're seeing, where sort of from the early days of transplant, stranger donors were looked down upon, screened out, thought to be mentally ill to these days where it's gotten safer, it's gotten more effective. And so transplant programs are now starting to encourage people to reach out and recruit altruistic donors.

James Myers

Quickly with

Dr. John Lantos

deceased

James Myers

donors,

Dr. John Lantos

we treat that very differently and probably for good reasons, Organs from deceased donors, they are the property of the family. So if somebody wanted to do a directed donation of a loved one, or if I wanted in my advance directive to say who I wanted my kidney to go to, I could. Although,

Dr. John Lantos

since I don't know when I'm going to die, and I don't know who's going to need a kidney at that time, if i said i only wanted to go to my children or my spouse chances are when i died they wouldn't need it and so instead what we do is say you know do you want to be an organ donor yes and if so there's a national system for allocating deceased donors to the people who need the most who are the sickest we've been on the list the longest and uh the system incorporates notions of justice that have been hotly debated by policymakers and bioethicists since the beginning of the UNOS system. That is, how can we be sure they're fair? Things like histocompatibility turn out to sort of match recipients who are of the same race as the donor. And so if more white people donate, you say you have a race-neutral allocation mechanism, which is only based on biology. It's just about histocompatibility. Turns out more white recipients get kidneys than black recipients. And so sort of trying to figure out how to perfect the justice considerations within the UNOS organ allocation system. has been a source of ongoing tweaking in controversy. I think it's a pretty good system now.

Dr. John Lantos

But they're treated more as communal property than as individual property.

James Myers

Okay. I just wanted to point out to our audience, Martha had permission to speak to her potential recipient, so she didn't do anything wrong. And also... I multi-listed. I was listed at Rush Medical in Chicago and at the University of Wisconsin in Madison. And those two groups did not give me any kind of don't do this communication thing with my potential recipients. And John mentioned kidney pages for individuals seeking a donor on Facebook. Yours truly has completed, made many of those kidney pages. uh for my friends so i don't want people to think martha did anything wrong i just thought it was an interesting ethical question and as long as i got the the guy here that's an expert on medical ethics i wanted to to bring that to our audience

Dr. John Lantos

well and and just to be clear she didn't need permission that is she she read about deb in the newspaper if she she could have looked up deb on facebook before she called the mayo clinic

James Myers

Yeah, that is an open invitation, right?

Martha Gershun

I'd say once you put your name and your photo in the newspaper, you're kind of out there.

Dr. John Lantos

Hospitals have very different rules because of this law we call HIPAA, which is to protect patient privacy. They can't give anybody any information without the person's permission. And that would include a potential donor, but it would also include... I mean, if Martha called up the Mayo Clinic and said, you know, tell me Deb's health records. I want to know if she's healthy enough before I donate. They'd say, no, we can't do that, the patient confidentiality. So they have rules that private citizens don't.

James Myers

Okay. Martha, talk to us a little bit about your challenges in scheduling an appointment at Mayo's for all this testing that they wanted and what difficult if any of you had and how it was resolved.

Martha Gershun

So by far the worst problem was that we couldn't fit in this ridiculous substance abuse appointment. When we got that cleared up, the rest moved pretty quickly. But it takes time and it takes money. And I was warned about this. I mean, I don't want to say that this was without consent. From the day I started talking to Lisa at the Mayo Clinic, she said,

Martha Gershun

Your recipient's insurance will cover all of your medical expenses. And it did. I didn't pay for anything. I don't think Mayo has my insurance card. But all of your travel will be at your expense. There's no reimbursement for your time off work. You have to bring a caregiver with you. There's no reimbursement for their time off work. So I was well informed. And I said, that's fine. We're retired. We have some money in the bank. We'll pay for this. But it turns out that it costs a lot of money and takes a lot of time. to do this. By the time we got all the way through to transplant, I didn't miss any paid work because I consult catch as catch can, but I didn't have a paying job at the time. My husband missed 16 days of paid work in order to accompany me and help me on this journey. And our out of pocket expenses were over $5,000. That's not a trivial amount of money. In our case, Deb's father reimbursed us. which it was incredibly sweet. He called my husband and asked if he could please send a check. He would be honored to. And we were honored to accept, but we had always planned

Martha Gershun

to front that expense. But again, when we talk about disparities, even if your recipient has money and is able to reimburse you, not everybody has a credit card. You can throw $5,000 worth of travel expenses on. Many people cannot miss 16 days of paid work. There were many times in my career where that would have been impossible. Don's kind of at the top of his nonprofit career now late in life, a little more flexibility. So once again, it turns out, and this is just part of the game, but this is very difficult to do. And there are a lot of financial and logistic barriers that make it hard for people to get it done. It's really hard to save somebody else's life.

James Myers

Okay, Anne. Correct me if I'm wrong, Martha, but we're talking about a 400-mile round trip between Kansas City and Rochester, Minnesota.

Martha Gershun

It's further than that. Yeah, it's about 600-mile round trip. One reason I thought this would be a good project for us, my son and daughter-in-law live in Minneapolis, which is not too far from Rochester, Minnesota. So I had this thought like, oh, we're going to go where Nathan and Bridget are. We're going to see Nathan and Bridget. Well, the Mayo Clinic is not in Minneapolis. And when you're spending, you know, 18 hours a day doing medical tests, you are not cavorting with your son and daughter-in-law. So while it was true that after surgery, they were able to drive the 90 minutes and come bring me bagels and chocolate, my thought that this would bring me closer to my son and daughter-in-law was kind of a fantasy. You know, nonetheless, it is the hospital at which she was registered, right? as you say, where the recipient's registered is where the donor's gonna go.

James Myers

What was your first day, your first round of testing with males like? How did that go? What were the results and what did they tell you?

Martha Gershun

Well, it was long. I mean, just exhausting. For the most part, I passed with flying colors. It turns out I have like remarkable kidneys, like really incredible kidney function. Who knew, right? In the normal course of affairs, people do not, rigorously test your kidneys. No heart problems, no lung problems. But there were two concerns. These were real medical concerns. These weren't things that the clinic was just making up to make life difficult for me. I had borderline hypertension. I wore a 24-hour blood pressure monitor, and it was high. And my blood sugar ratings were borderline high. And those are two real concerns because hypertension and diabetes are really hard on kidneys. And if you only have one, that's not good. As it turns out, there's a more sophisticated test for blood sugar. I was surprised at that number. I've been tested for blood sugar many times and not had problems. They did the more sophisticated test and I passed, just barely, but I passed. They required me to go on a blood pressure medication in order to proceed with the transplant.

Martha Gershun

that seemed reasonable to me. Again, why wouldn't I take one pill a day to save Deb's life? And it was pretty clear to me that that was probably something I should do anyway. And that what I should really be very grateful to the Mayo Clinic for was diagnosing my hypertension so I could get it immediately under control now and for the rest of my life. But there were hiccups. These were hiccups along the way. Could have dissuaded someone. I never felt that if I gave away a kidney, I was going to have a foreshortened life. I mean, I really never felt that. But it did seem reasonable that I should take good care of myself. And I haven't missed a day taking that medication since. So who knows? Maybe getting evaluated saved my life in a different way.

James Myers

Okay. A couple of follow-ups, Martha. One, it's my understanding that on the way to Mayo Clinic, you were... contributing to a 24-hour urine collection in a big orange canister, which I've been exposed to a couple of times. And two, the initial medication that was prescribed to you for your blood pressure, you didn't exactly get along well with that, did you?

Martha Gershun

So yes to the 24-hour urine collection. If anyone's not done that, who's on this call, I highly recommend it. You have no idea how much you pee until you keep all of it in an entire bucket for 24 hours um in retrospect that's something i probably should could have done if they let me know in advance and just you can mail up a sample and they can run the test um i i would not recommend to somebody that you make that long a road trip stopping to pee in an orange gallon jar every time you walk into a quick trip but that was not the worst of the barriers um

Martha Gershun

It is also the case that the very first medication they prescribed for my hypertension has a pretty well-known side effect. About 20% of people get a dry cough. And when they told me that, I was like, okay, 20% and dry cough, whatever. Well, it turned out the dry cough was persistent and impossible. I couldn't sleep. I couldn't go to the movies. I couldn't go to the theater. And I spent a couple of really bad days thinking, I can't cough like this for the rest of my life. I'm going to have to back out. My very sensible husband said, call your primary care doctor. Don't figure this out. You are not a doctor yourself. And when I did, my primary care doctor said, oh, yeah, that happens all the time. I'm switching your medication. You'll be fine. So in fact, I did switch the medications. I did retest and my blood pressure simmered right down. So again, no criticism to the system there other than my head, if you tell me it only happens 20% of the time, I'm really sure it's never happening to me. And I could have been a little more sophisticated about

James Myers

that. OK. Doc, we've talked a little bit about strange donors, irrational, and slow acceptance. Talk to us about the modern assessment basis of potential risk. of the donor and the likelihood of the transplant of being a success? What has changed?

Dr. John Lantos

So

Dr. John Lantos

it depends how long a timeframe you take, but over the history of transplant, which is now 70 years, a big thing that's changed is our understanding of immunology and rejection. And that's led to two separate technological innovations. One is tissue typing and better understanding what it means to match. In the early days, it was just about biologic relationship or blood type. But now we've learned about the many different tissue antigens that lead to better or worse outcomes. So if you can get a well-matched kidney that improves outcomes dramatically. The other is better medications for immunosuppressions. If you're not well matched, the way to prevent rejection of the transplanting organ is to suppress the recipient's immune system either for a short time or a long time. One of the devastating adverse outcomes in the early days was rejection of the kidney or

Dr. John Lantos

sometimes the kidney Well, rejection of the kidney would be the worst, where the recipient's antibodies would attack the kidney as a foreign object and shut it down. And so you wouldn't get viable kidney function. So those are the things that have led to better outcomes for the recipient. On the donor side, it's the kind of comprehensive medical screening and psychological screening that Martha underwent. I mean, the idea is to find someone whose

James Myers

kidneys

Dr. John Lantos

are perfect and who doesn't have any other medical problem that might lead them into kidney failure when their innate renal function is cut in half by the removal of one kidney. So if they have hypertension, if they have diabetes, if they have heart disease, they have pretty much any other medical problem. they may not be eligible to donate based on the long-term risk to the donor. It's interesting. I mean, we're going to get into markets for organs. But one of the things that often comes up in evaluating the ethics of markets for organs is, how risky is it to donate? And how rational would it be for someone to say, I'll sell my kidney. Pick a number, $15,000, $20,000. And in many of the discussions on that, they highlight the potential risks to the donor. Those risks are minimized if the donors are carefully screened. If you're doing it for no money and you're rejected, well, that's sad. And you may not like it, but probably willing to accept it. If you're really counting on the $20,000 for something, you may

Martha Gershun

be.

Dr. John Lantos

tempted to lie about things like a past psychiatric history or a history of drug use or even a history of medical problems.

James Myers

Okay. Martha, after you went through all of this testing and you did all the things that Mayo asked you to do with your glucose and your blood pressure, and I understand there was some retesting that went on. Tell us about your conversations with the Mayo Clinic and a little bit about how you had to push your way through to actually be able to donate to Deb.

Martha Gershun

It was really important to the clinic, and I think this goes to a lot of the things that John has talked about, that my motivations were sincere, were pure, and were consistent with my values in life. the fact that I'd spent my career, much of my career in nonprofit work, that this was inconsistent with my faith values. All of those things, I think, really reassured them that I was doing this for a lot of the right reasons. And the story about my cousin and the bone marrow transplant, things that make this look like not a one-off, like one day you wake up and you're crazy, but that it's consistent with your life path. I would like to think that when my friends learned that I was going to become a kidney donor, for the most part, they thought, oh, that sounds like Martha. That's what you want it to be. You want it to be consistent. Once we took care of the retest on the glucose, once I passed the retest on the blood pressure situation, I was essentially good to go. I had to wait for all my other tests and things to be sent to be sent up and i had to wait for the committee to meet but it was pretty clear that i had checked all the boxes and that and that eventually the call was going to come that said yeah you're you're good to go let's do it

James Myers

terrific um john we've talked a little bit about the strong motivation to screen and reject people that aren't physically and psychologically healthy or have financial issues Do you feel that there are unnecessary bureaucratic barriers for living donors who wish to donate? And how do we overcome these barriers and still maintain appropriate patient protection? For example, you talk about in the book, the Irish have a one day evaluation process. Can you address those things for us, please?

Dr. John Lantos

Yeah. I mean, one of the interesting things about the way

Dr. John Lantos

transplant programs have developed with regard to this issue is there's no standardization. So every program gets to make its own rules about what sort of testing should be done, how comprehensive it should be, and what the criteria should be for considering somebody eligible or rejecting them. um it would be nice and i haven't seen this to to know whether uh the programs that require three days like the mayo clinic uh have better long-term outcomes for their donors than a program like the one at belfast hospital that does it all in one day if they do then i think it would be reasonable to say belfast is cutting corners and Mayo, for all its bureaucratic hassles, is doing the right thing. They're erring on the side of safety. If there's no difference between the two, then I think you'd say not only is Mayo throwing up bureaucratic hurdles, but they're doing it in what seems to be a somewhat self-serving way. They're getting paid for all these evaluations. And when they do three days' worth of evaluations, I mean, the recipient's insurance pays for the medical evaluation, so that wasn't part of the financial barriers for the donor.

Dr. John Lantos

But it's in the institution's interest to do more testing rather than less, as it is in every other medical. But figuring out what actually works, I mean, and it seems like

Dr. John Lantos

Where I would start would be diabetes, hypertension, heart disease, and maybe a psychiatric evaluation

Dr. John Lantos

would probably be a pretty good place to start as a comparison to a more comprehensive program. Problem is you'd need to follow people for five or 10 years since whatever problems donors have, aside from the immediate surgical problems. probably wouldn't show up for a long time. And what you're really worried about is that they're going to develop kidney failure or more hypertension down the road. And so these would be difficult evaluations to do, but we're going to be having transplants for a long time. So it would be worth trying to sort that out.

James Myers

Okay. Martha, you talked to us about your high blood pressure and I understand you were taking this linusapril that it didn't agree with you and one of the things that Mayo agreed to is they were going to send you a special blood pressure cup so you could check your blood pressure in a couple of weeks and get back to them and hopefully you know without the hustle and bustle of running around in all their buildings to get all the testing done and the travel over 400 miles to get there your blood pressure would have gone down i understand they sent you this special blood pressure cup early earlier than than they should have and they had to send you a second one can you talk to us a little bit about that

Martha Gershun

yes administrative scheduling i think wasn't their strong suit um so the blood pressure cuff showed up uh too early And I called and I said, you know, I'm supposed to be on these meds for 10 days or whatever it was before we measure it. How about if I just hang onto the cuff and do it then? They said, oh my God, no, the battery will run out and won't work. Send it back. So, you know, I'm in the car driving to FedEx. We send the thing back. We have to wait for the new one to come. There were many times when I felt like I was responsible for Mayo's shipping and receiving protocols and scheduling management. I'm not saying that the kidney transplant wouldn't have happened anyway, but in order to make things move in a fluid and consistent way, which is all that was going to suit me, it seemed like there were a lot of hiccups that I was kind of cleaning up after. And, you know, they have this saying in the New York Times, which is, if we have typos, if you don't believe our spelling, how can you believe our facts? sometimes i worried if you can't schedule my blood pressure cuff right how can i be sure you're going to cut in the right place now of course they always cut in the right place at the mayo clinic always but still i think you need to take as much care with the little things

Dr. John Lantos

as you do with the big things

James Myers

okay and they mark you too right

Martha Gershun

oh yeah oh yeah big uh sharpie and the surgeon's initials it didn't wash off for like five months

James Myers

Did

James Myers

they ever discuss with you paired donation change exchanges in the event that the blood pressure was too high?

Martha Gershun

Not because of the blood pressure, but there was a period in... It took nine months from the day I first called until my kidney was actually transplanted into Deb for some reasons having to do with her scheduled vacation. My kids had a wedding. A lot of things had to be worked out. There came a period where one of the blood tests showed that the HLA tissue typing was not going as well as it had gone. Deb's blood is highly sensitized. People who are multiple transplant recipients take a lot of immunosuppressant drugs, have a lot of issues. And there was a sense that we might not be as perfect a match, that we were starting to have some issues. And the question was, did we want to enter the paired or the chain program? And Deb and I both said yes. I felt really strongly that the goal was to give away my kidney and Deb would get a kidney. And if something else happened in the middle, that was fine. At one point, they did make us a match. There was going to be a six-person chain, three donors and three recipients. I was kind of excited about that. Save one life, save three lives. That seemed better. It fell apart. Not Deb and me, but something happened in one of the other pairs. And of course, because of HIPAA, they don't tell you. But someone got sick, someone died, someone backed out. And they never found another match for us. So Deb and I moved to a directed donation. As John said, what that really meant is that her immunosuppressant regimen was more complex after surgery not that it couldn't be managed but it would be more complicated but um the decision was that we were good enough and we weren't going to keep just sitting out there waiting but i got to play in that system a little bit it's pretty interesting

James Myers

yeah um john talk to us a little bit about paired exchanges and chain donations as martha's pointing out if somebody in the chain has issues doesn't match up if there are problems then the whole thing seems to disappear. Can you explain to our audience what paired donation and chain donation is all about?

Dr. John Lantos

Sure. So the idea for this was developed by an economist who's now at Stanford, a guy named Al Roth, who actually won the Nobel Prize in economics for coming up with this idea. Roth himself thinks that we should just legalize markets in kidneys, regulated markets.

Dr. John Lantos

And as an economist, he thinks that would be a much more efficient way to organize this whole process of living donation. But he couldn't do that. And so he pretty straightforwardly said, well, if I can't do money markets, I'll do barter markets, which seemed to be a loophole in the system. And the initial was a paired exchange.

Dr. John Lantos

It is a straightforward barter thing. The idea is if you have a loved one who needs a kidney, but you're not a good match and somebody else has a loved one. I'm trying to get my fingers on the camera here. They need a good match.

Dr. John Lantos

And they're not a match. You say, I'll donate to your loved one. If you donate to my loved one, that's a barter. And both recipients get a matched kidney. And everybody's better off. So Roth said, this is a perfect market exchange. Everybody feels like they're better off. What's wrong with that? It would be better just to say, let's give people money, but we're not allowed to do that, so let's do this. And initially, there were questions about whether that was legal under United States law, because paying somebody for kidneys is not legal. They actually amended the Organ Donation Act to allow uh... paired exchanges and once paired exchanges work then to go to chain exchanges is uh... pretty easily at least conceptually if you want to donate to your loved one but you can't but you find somebody else and their potential donor isn't a match and they find somebody else their potential isn't a match they find somebody else eventually you get this chain as long as the last potential donor matches with the first potential recipient close the loop of the chain and just like in a paired donation Everybody gets a kidney, everybody's better off even though you didn't give to your loved one. The longer the chain gets, the more logistically complicated it gets because once you take a kidney out, you have to put it in relatively quickly and all sorts of barriers to transplant come up as came up with Martha and Deb eventually. We'll get to that where on the night she was, before she was supposed to get a transplant, sick and couldn't go through with it. If she had been part of a 20-person chain, the whole chain would have fallen apart. So they're tough to organize. But ethically, they're relatively simple in the sense that everybody's better off. They get more complicated when they start to push the boundary on what it means to legalize a market.

Dr. John Lantos

You know, I could give a kidney to your loved one and you could give a kidney to mine. Could I give something else to your loved one instead of a kidney? Could be another organ. Maybe I'd pay for their medical treatment for cancer. Maybe there would be other ways to imagine this barter exchange going the farther down that road you go, the closer you get to more traditional money markets.

James Myers

Okay, Martha, it's my understanding from my notes that your case and Deb's case was submitted to the selection committee April 26th, that the first attempt at the surgery was booked September 18th. But in between, you have something that you referred to as the dry ice saga. Can you tell us a little bit about What went on with the dry ice thing? Because when I read this, I couldn't believe it.

Martha Gershun

So it is my favorite section of the entire book. And if anybody needs incentive to read the book, it's worth it. It's even better that I'm going to tell the story now. But 30 days before any living donor transplant, the living donor has to be tested for HIV and hepatitis. That's a federal law. You do not want to transplant an organ. an infected organ into someone who's about to be infused with immunosuppressant drugs that would probably kill them. I understood that that was no big deal. Um, and the way, the way that test is done is like so many other times they were gonna send me a box. I was gonna have blood drawn. I was gonna ship the blood back and Mayo was gonna run the HIV and the hepatitis test. Well, it turns out that that particular test has to be run on cold blood, which means that you have to ship it back on dry ice. So I get a box from the Mayo Clinic, the same box I'm always getting with these instructions, please ship back on dry ice. Well, I don't know about you, but I had no idea how to do that. I know how to buy like big, big chunks of dry ice to ship steaks across the country. But you know, there's a little box.

Martha Gershun

So I called my donor coordinator at Mayo and she said, oh, well, your doctor should be able to do that for you. So I called my doctor and they said, well, we can draw the blood, but we don't ship on dry ice.

Dr. John Lantos

So

Martha Gershun

I called the Mayo Clinic again and they said, well, here's a website. It has all the people who sell dry ice all over the country. So I found one place in Kansas near where I live that sold medical transport dry ice. I went down to see them. Sure enough, they sold dry ice pellets. And if I would come at 6 a.m. the morning I was to have my blood drawn, They would put some dry ice in a box and let me take it to my doctor's office. But oh, they tell me you have to be careful because if you don't pack the box properly, it will explode on the airplane and kill everybody.

Martha Gershun

This was a source of great concern to me, trying to save Deb's life. I didn't want it down like the FedEx airplane. I Googled it. Yeah, sure enough, if you package dry ice too tight, it has no way to expand as it evaporates and it will go kaboom. So I found somebody at UPS who helped me, who agreed that they would pack it. I got my blood drawn. I got the dry ice. This thing took me hours and hours of logistic management. And I'm a very good logistics manager. This is in my sweet spot. This is stuff I do well. But it was very hard. And it was completely ridiculous and absurd. I should have been able to do the HIV and hepatitis test at the local Quester LabCorp here in Kansas City. I'm sure they do HIV and hepatitis tests all the time and have the results faxed up to the Mayo Clinic. There's no reason in the world that somebody else can't run that test for them. But it's one of these, we do it better, we do it ourselves, only we can do it, that led to these ridiculous complications. Once again, I have a car. I have money to put gas in the car. I'm retired from paid work. I'm not managing small children. I don't have an elderly mother in the back bedroom. But think of all the reasons this would be an obstacle for someone who is less well-resourced than me to not end up donating a kidney because they can't find the dry ice. In my mind, it is the stupidest of the barriers because the solution is so simple. We test for HIV and hepatitis all the time, all over the country. This is not tough or tricky or anything. It's not proprietary. So that's my saga.

James Myers

Okay. John, we've been through a few of Martha's disincentives that face organ donors today. It's my understanding from reading the book that one of the things you propose is that treating kidney donors like financial philanthropic donors is a better way And if so, why do you feel that way? And what are the types of things that transplant centers can do to reduce barriers for altruistic donors like our friend Martha?

Dr. John Lantos

Yeah, this would be a way of encouraging donors without going all the way down the road towards markets and kidneys.

James Myers

I mean,

Dr. John Lantos

most of the book is about these stupid barriers that Martha faced that were just inattention to detail. and inconsiderateness. And we all know that there is a department in the hospitals that is very good at paying attention to that sort of detail, and that's the Department of Philanthropy. I mean, when they court financial donors, they take care of their every need. They have paid staff whose job it is to make sure that that occurs. The same could be done with organ donors. Just take an institutional commitment and

James Myers

some

Dr. John Lantos

resources up front to make that happen. Development offices put in that money because they're making money. But transplant programs make money for hospitals too. I think this would be a relatively simple solution, although it would take a relatively radical a shifting mindset to think of people who want to donate a kidney the way you think of people who want to donate money?

James Myers

Okay. Martha, I understand that the first transplant surgery scheduled September 18th didn't go forward. That eventually it was rescheduled September 28th. Can you talk to us about what happened on those two dates, the 18th and the 28th?

Martha Gershun

Deb and I both got to the Mayo Clinic on September 17th for another day of testing. There's some still last minute tests to be sure that everyone is okay. And Deb wasn't looking good. I hadn't seen her for many months, but she had lost weight and she's not someone who had weight to lose. She was pretty pale. And by the end of the day, I kept meeting her at these various testing stations at Mayo. She was in a wheelchair. Her boyfriend was pushing her. They asked her to check into the hospital overnight in preparation for surgery. I went back to the hotel and was going to go in the morning.

Martha Gershun

That night I did the prep things they tell you to do before surgery. I washed with an antiseptic soap. I think that's pretty standard operating procedure. I drank an entire bottle of laxative because they would like you cleaned out before you go under anesthesia. And having done both those things, the phone rang at 9 p.m. It was the nephrology fellow in the hospital. And he said, we're calling off your surgery. I said, what do you mean? He said, Deb's sick and we're calling off your surgery. And I said, oh my God, tell me what's wrong. He said, I can't, HIPAA. That should be a chapter in the book. The book is called HIPAA. I said, what am I supposed to do? He said, call your donor coordinator in the morning. I'm sure they'll have more information for you. I said, can I talk to Deb? He said, she's crying. You can't talk to her. So I hung up the phone and I was essentially out of my mind because my orientation had been so radically jarred. And I said to my husband, Pat, we're going home. The surgery's off. He said, it's 9 p.m., it's dark outside, and you just drank an entire bottle of laxative. We are not going anywhere. Which, of course, was sensible. He's a very sensible man.

Martha Gershun

Went to sleep. I was up a lot that night for the obvious reason you can guess. And at one point, I went ahead and logged on to CaringBridge, the website that both Deb and I were using to keep our families informed. And Deb had posted. And I understood the story. They had done a lung x-ray. They had seen shadows on her lungs. They were concerned it was an infection. If it was an infection, they couldn't flood her with immunosuppressant drugs. They had to wait till morning when infectious disease could get to the hospital and see what was going on. Of course, they had to cancel the surgery. It could have been life-threatening to her. As it turns out, there was no infection. Her kidneys really were failing, and it was liquid. It was water that she was retaining because her kidneys weren't working. And the way they handled it was to pump her with Major League Diuretics IV in the hospital. They sent me home to wait to see if Deb could get well enough to survive the transplant. So Don and I... Drove back home to Kansas City. Those were long days waiting. I was very worried about Deb. She texted me all the time, but she was worried too. I know she was scared.

Martha Gershun

And then finally, the Wednesday following, I got a text, we're good to go. It's okay. And then my phone rang. It was the donor coordinator. She said, get up here. We're going to go. So in fact... on September 28th in the Mayo Clinic in two adjoining operating rooms. They took out my left kidney and they transplanted it into Deb. This time everything was fine. It worked. I came out of anesthesia. She came out of anesthesia and we had the happy ending that we had worked so hard for.

James Myers

Okay. Talk to us a little bit about your current health situation, Martha, and what you know about deb's current health situation how are you guys doing

Martha Gershun

i think we're both doing great um my uh my creatinine is about 1.2 so those of you who are kidney people know that's not great if you have two kidneys but if you only have one kidney it's really good um hypertension's under control and the rest of me is just fine i just heard from deb a couple of days ago as we always when we get close to our transplant anniversary there's a lot of back and forth She's in Anchorage, Alaska on vacation. And I wrote and I said, you take my kidney to the best cases. And she said, uh-uh, honey, it's my kidney now.

Brief crosstalk / diarization fragments

All

Martha Gershun

right. Yeah. I really think in a lot of ways I'm healthier than I would have been if I hadn't done this because I watch my weight. I drink a lot of water. I monitor my salt intake. I take my hypertension medications. There's something about doing this that makes you not wanna then be stupid and hurt yourself. And so I think I'm in great health and I have every intention of living just as long as I was planning to live before.

James Myers

Okay. Sean, when you listen to all of these challenges and in the process of writing the book, concentrating on Martha's challenges, what lessons should we have learned from this experience what are the things that transplant centers could do differently to make it easier for someone like martha because there's lots and lots of challenges here i i i'm amazed that at some point in time she did not throw in the towel

Dr. John Lantos

yeah well i i i mean in some ways my answer is one that martha's given when she's asked been asked the same question, would be to assign a single coordinator who would see the case through from beginning to end and stay in touch and explain what's going on and troubleshoot. So somebody in Mayo needs to hear about the dry ice problem and figure it out. Somebody in Mayo needs to hear about the substance abuse council shortage and figure it out. And it seems like, I mean, Mayo, I'm sure is

Dr. John Lantos

as good or better than most. I doubt that the problems are unique to that institution. It just happens to be the one Martha was at. But it's to recognize that donors are making an altruistic donation. And again, get back to this idea that they should be treated like donors and honored and cared for.

James Myers

OK. We're in the home stretch here, guys, honest. Last questions for both of you. We'll start with John since we started with Martha. Is there any statement that you would like to make in conclusion tonight, things we haven't discussed, something I missed, any kind of closing statement you would like to make, John?

Dr. John Lantos

Only to say this is one story, and every transplant story is different. And one of the unique factors of this one was both the donor and the recipient were not from the town where the transplant was taking place. So that made everything more complicated. This probably isn't the typical story. But from what we've heard talking about this in various other venues, everybody faces some bureaucratic hassles. And there are now organizations designed to help overcome them. Kidney Foundation has programs to help cover some of the expenses that Martha and Don incurred as part of this. There's a bill in Congress that helps offset some of the expenses for the poorest candidates. So it's not that people are unaware of this. There's recognition that these are problems and really important attempts to try to solve them. So things are getting better.

James Myers

Okay. Martha, do you have any closing statement, any closing thoughts you would like to make at this time?

Martha Gershun

Well, what I always want to tell people is, you know, the book is sort of a cosmic bitch by Martha about things that didn't sit in the system, and thank you, and plugging, and John's efforts to explain, put them in context, show how other ways we might think about them. But in fact, Donating my kidney to Deb was the most meaningful experience of my life other than giving birth to my own two children. And I wouldn't have changed doing it for the world. I just wish doing it had been different. And I felt compelled to advocate for some changes in the system that would make it easier for other people. But the real truth is given the opportunity to save someone else's life, it's a miracle. And I would encourage anybody with any inclination at all to give it a shot. And as John says, stay in your hometown. It's better to stay in your hometown. So it was too hard. We should make it easier. That being said, I think this is a gift both to the recipient and to the donor.

James Myers

All right. Well, I thank both of you very much for taking time out to come on and to educate us and instruct us on kidney donations. First time I've... I've ever had an ethics discussion about issues in kidney donations. Just wonderful, John. Great discussion. And probably the coolest kidney donation story I've ever heard in my whole life, you know, from Martha. So I greatly appreciate that. I know I kept you guys a little over what I promised. So I'm going to let you go. I have some things to do to close up with the folks to let them know what... what's coming up in the future. But I just wanted to say, I greatly appreciate you taking time to raise awareness and to educate us on this issue. Just a wonderful job tonight. And I want to recommend everybody check out the book, Kidney to Share by my friends, Martha and Dr. John. And it's a great book. It's a good read. It's real easy to read. You don't want to miss it. Thank you so much for having

Martha Gershun

us. Thanks for spreading the word. It's important. We really appreciate it.

James Myers

Well, I'm not done yet, Martha. Trust me. By the end of the week, over 1,000 people are going to see this.

Martha Gershun

Thank you so much.

James Myers

All right. You guys have a good evening, and let me talk to my audience, and I'll let you go.

Martha Gershun

Good night. Thank you. Good night.

James Myers

Good night now. All right. So another broadcast in the books. Let's talk about some things that are coming up. On the 19th of August, a great kidney advocate and a regional five leader from the National Kidney Foundation, Beth Lundridge is coming on to talk to us about her kidney advocacy and her kidney experience. On the 26th, Dave LaFletch, he's a PKD patient who's seeking, he lives in Canada. We're gonna talk a little bit about their transplant system comparatively. On the 2nd of September, Kale Yochum is coming on to talk to us about her kidney story. And that's an interesting story. You don't want to miss that. On the 16th of September, Shane Moore and a

James Myers

representative from a company that has helped him, Michelle, and I hope I get this right, Arklez, Arklez, something like that, bad uncle Jim. They're going to be on to... talk about Shane's transplant. His friend is coming on with him, the person that donated, and you don't want to miss that. And we're going to talk a little bit about silent rejection and some other issues. I have openings on the 23rd and the 30th of September. So if you would like an opportunity to tell your kidney story, you have something unique or special, that you would like to discuss. If you have an expert you would like to recommend, contact your Uncle Jim on Messenger, and we'll see if we can get something arranged. So at any rate, thanks to everybody who commented. My good friend Rachel hung in there all the way to the end of the broadcast. Thank you, Rachel. Rachel's my advocacy partner with... kid in a can and did an excellent job and we're going to get rachel on the show real soon so all right everybody well you have a good night take care and we'll be in touch