Kidney to Share Authors on Living Organ Donations

Steve Kraske

And welcome back. This is Up to Date on KCUR. I'm Steve Kraske. April is National Donate Life Month. It serves as a reminder of the importance that organ, eye, and tissue donors can make in the lives of others. How many of us have marked on our driver's license that our organs are to be donated? That's for when we die, but you can be a living donor as well. Here to tell us about it are two people who have teamed up to write a book about all this. The title is Kidney to Share. Dr. John Lantos is the Glasnap Family Foundation Endowed Chair in Bioethics and Director of the Children's Mercy Hospital Bioethics Center. Dr. Lantos, John, nice to have you back again.

Dr. John Lantos

Great to be back. Thanks, Steve.

Steve Kraske

Martha Gershon is a principal at MG Consulting and a living donor. Martha, good morning to you.

Dr. John Lantos

Good morning, Steve.

Steve Kraske

Martha, you tell a story in this book about your decision to donate a kidney to a woman who was once a complete stranger to you. Why did you do it?

Dr. John Lantos

You know, the timing was just right, Steve. I had recently retired from my work in the nonprofit sector. Our kids were grown. Sadly, our parents were already gone. There wasn't really anybody who needed me to do something else more important. And I read an article in the Kansas City Jewish Chronicle about a woman about five years younger than me. She had two kids like me. She was a lawyer, which isn't kind of like me, but sort of kind of like me. And as I read her story, I kept thinking, I hope somebody can help. Someone needs to help this woman. And then I had I mean, it was really kind of a thunderbolt moment. I thought this this could this could be me. So I put down the newspaper. I talked to my husband and I made that phone call to the Mayo Clinic to start a very long. very complicated, very uncertain process to be Deb's living kidney donor.

Steve Kraske

When you decided, Martha, that this could be you, was that your own thought or did someone put that idea in your head for you?

Dr. John Lantos

That's a great question. Living kidney donation is part of my family's story, and I'm sure that impacted me. I had a beloved cousin in Omaha. who received a living kidney donation from her best friend in 2002. So a long time ago when this was much less common and Ann lived another nine years, she participated in many family events. I was always so grateful for that. But I didn't really ever think it would be me. But I do think it's important to note it wasn't a strange idea to me. I had seen it before. I had seen the joy and the gift it can be. And I just thought, you know, I'm retired. This is my next project.

Steve Kraske

Well, before you proceeded with this, did you call up this lawyer and did you go sit down and have lunch with her and sort of size her up a little bit and see if this was someone you wanted to support in this way?

Dr. John Lantos

I didn't. And there's a really specific reason. The odds of a stranger, a non-biological relative matching for any specific, very particular kidney patient are one in 100,000. So to call and say, I'm sending blood and a kid up to the Mayo Clinic to see if I'm your match. There are probably 50 people who did

Dr. John Lantos

that for her.

Dr. John Lantos

I only contacted her after I found out I was her exact perfect histocompatible match because that's when it became real. You

Steve Kraske

know, a lot of people would be like, you know, no, thank you. No one's going to operate on me and pull out one of my organs. It's all just too risky. What do you say to them?

Dr. John Lantos

It's not nearly as risky as you think. It's abdominal surgery. It's laparoscopic. I'd already had my gallbladder taken out. They'd already taken something out of me. I have a lot of friends who've had hysterectomies. That's a much bigger organ than a kidney. So I think people's fear in their heads is a whole lot bigger than reality. The truth is that the risk to living kidney donation is that you have to live the rest of your life with one kidney. And it does make you slightly, slightly, slightly, slightly more likely to get end-stage renal disease. But that's such an unlikely occurrence to begin with. And I was so well-screened. I went through three days of medical tests at the Mayo Clinic. I'm the healthiest person you know. And they had to believe that before they would do the surgery.

Steve Kraske

Dr. Lantos, it strikes me as Martha's telling a heroic story here. How would you describe her?

Dr. John Lantos

I think she downplays how extraordinary her gift to Deb was. I mean, she makes it sound almost matter of fact. I think your response is probably typical of what most people would say. A lot of people have trouble even taking the time to donate blood, which is much quicker, safer. But you do have to drive to a blood donation station and make an appointment and get an IV. And they have trouble getting people to do that. This is a much bigger thing, although it's also a much more directly life-saving thing. So most people who decide to do it talk about it as being one of the emotional and spiritual peaks of their lives.

Steve Kraske

How many more Martha Gershons do we need in this world, Dr. Lantos?

Dr. John Lantos

Right now, there's about 100,000 people on a waiting list for a kidney. About 12 people in the United States die every day on that waiting list. So

Dr. John Lantos

that would give you a ballpark figure of how many it would take to clear out the current waiting list. But every donation helps. So the goal isn't really to get it to zero, but to save as many lives as possible.

Steve Kraske

John, did Martha describe the risk pretty accurately? giving up a kidney in this case? Is it fairly low risk when it comes to my own personal health?

Dr. John Lantos

So one of the things we talk about a lot in the book and that we explore some of the ethical issues, it is very low risk if potential donors are carefully screened both medically and psychologically. The psychological piece is the most ambiguous since in the early days when People would sign up to donate to somebody they didn't know. Most doctors and transplant centers treated them like they were insane. They said nobody in their right mind would do this. And the first step was to refer them to a psychiatrist and see if they needed help. Over the years, that's turned into more of a screening process to see whether people have any mental health problems because donating can be psychologically stressful as well as... physically. But if you are carefully screened and you're in good physical health, that is no high blood pressure, no diabetes, no other chronic underlying conditions, and you seem psychologically stable, then yeah, it's a pretty safe procedure.

Steve Kraske

Martha, did you find it psychologically distressing as Dr. Lantos just said?

Dr. John Lantos

I did, but not for the reasons you would expect. The idea of saving Deb's life was powerful and motivating. And that only truly brought me pleasure and determination. But the logistic hassles of getting this done, and that's a lot of what we talk about in Kidney to Share, that the system has a lot of barriers in place. That was really frustrating. I'm someone who likes to hop over barriers. I like a straight line from here to there. And there's still a lot of residual stigma associated with donating a kidney. When I disclosed to Mayo that I had seen a therapist around the time I was trying to decide about retiring, they wanted me to fax all my records up to them immediately. When I disclosed that I'd smoked marijuana in Colorado on vacation where it's completely legal, they insisted I see a substance abuse counselor. So some of those kinds of barriers I found a little annoying and frustrating. And one of the reasons John and I paired up to write this book is our belief that those barriers create health disparities. It was easy enough for me to get past the barriers. I'm well resourced. I'm retired. We're comfortable financially. I don't have kids to take care of. But what about somebody who's in a different situation? Someone who's trying to save the life of her sister with a kidney donation. But she has an hourly job at McDonald's and three kids at home. The barriers we put in place, I think, would make it almost impossible for someone in that very common situation to do something like this for someone they love, never mind even a stranger.

Steve Kraske

John Lantos, why so many barriers to making an organ donation?

Dr. John Lantos

It's a great question. And in Kidney to Share, we really talk about... the two types. One is the sort of psychological barrier for somebody who wants to do this. But then we also spend a lot of time talking about the public policy and the institutional barriers. And what we end up concluding is there's three types. One is this stigmatization that comes from thinking that somebody who wants to donate might be crazy and asking for their... psychotherapy records and sending the substance abuse counselors. I

Steve Kraske

mean, that idea never crossed my mind, John, that someone who wants to donate would, would you would assume they're crazy. I don't, I don't get that, get that link. That doesn't, that doesn't make any sense to me.

Dr. John Lantos

You should read the book. There's a great chapter talking about some of the evaluations that people went through in the early days. It may relate to your question of whether somebody put the idea into, Martha's head, a lot of what the psychiatrists do is try to figure out whether people are being coerced or being paid under the table, whether this is a truly voluntary and therefore purely altruistic act or whether they are part of a sect or a cult or some other

Dr. John Lantos

reason to think that this is not a purely... Voluntary Act. Those carriers are there. I

Steve Kraske

don't want to belabor the point, but what difference would it make if you're part of a sect or if you're willing to donate and there's a need out there? Why do people care?

Dr. John Lantos

The idea is that you are taking a risk, a personal risk, and therefore your decision should be completely voluntary and uncoerced. That notion is fraught with Ambiguity and complexity, especially if you consider intrafamilial donations. To donate to a loved one because you love them is, many people in their head say, this was not voluntary. I had no choice. So

Steve Kraske

Martha's experience running through this gauntlet, if you will, John, is this a pretty typical experience for someone who wants to become an organ donor?

Dr. John Lantos

It is. Most places have not figured out how to lower the barriers, particularly some of the financial barriers. So as we talk about in Kidney to Share, Martha had to make a couple of trips up to Minnesota where the donation was supposed to take place at her own expense. There are mechanisms in place to pay the medical costs of a donor, but not to pay for lost work and travel and... all the other things that are associated with it. So these barriers could be lowered. And the policy piece of the book suggests that there ought to be a way somewhere between our current system and the other extreme, which would be free markets in organs where you buy and sell them. But to say legitimate expenses associated with donation should be covered so that they aren't barriers for people who are altruistic and want to give the gift of life to someone else.

Steve Kraske

If you're just joining us, you're listening to Up to Date on KCUR. We're talking about organ donation this morning, the idea of eye, tissue, organ donations, so much need out there. And a new book that's now out to talk about all this and explain it all. It's called Kidney to Share. The co-authors are Dr. John Lantos. He's director of the Children's Mercy Hospital Bioethics Center. And Martha Gershon, who's a principal at MG Consulting. She's a living donor herself. If you have questions for our guests, 816-235-2888. Or you can tweet us at KCUR, up to date.

Steve Kraske

Martha, what was the recovery period for you like after you donated your kidney?

Dr. John Lantos

I recovered from the surgery really quickly. I was out of the hospital after two nights. I was able to walk half a mile to see my kidney recipient in her condo where she was recuperating. And in fact, the third night after surgery, we were in a hotel in Rochester, as John explained. This was an out-of-town donation.

Dr. John Lantos

There was a fire alarm.

Dr. John Lantos

And I grabbed my purse and my computer and made my husband walk down the six flights of stairs because I was determined not to die in a fire having just donated a kidney. And when they cleared the fire alarm, I walked back up the six flights of stairs. So I recovered quickly. Took me a while to get past the fatigue of anesthesia. I was 61 when I donated, not a spring chicken. There's some sense that having cut your kidney capacity in half overnight makes you tired. But within four weeks, we went to New York City on vacation. I went to two Broadway plays and I walked up and down. So because people are so carefully screened for this, and you really do have to be in very, very good health for them to say yes, coming out of it, I have to tell you, it was a whole lot easier than birthing two babies 20 years before.

Steve Kraske

Martha, is it unusual for donors and recipients to meet?

Dr. John Lantos

It's quite common. Every year in this country, there are only about 5,000 people like me, living organ donors. And of those, only 10% give to someone who was not previously related, who is a stranger. So 4,500 of those 5,000 people, they're related. They're spouses, they're cousins. Maybe they go to the gym together. The fact that Deb and I were complete strangers until we matched and then we met for lunch, there are only 500 of us a year in this country. I asked when I was up at the Mayo Clinic and going through all these psychological evaluations and medical evaluations, if most people do choose to meet, and they said yes. The number of literal anonymous donations is really still quite small.

Steve Kraske

That must have been a moment for you, Martha, when you met the person you donated your kidney to.

Dr. John Lantos

It was the most extraordinary thing. Deb and I met a few weeks after I found out I was a match. She actually lives in Fort Lauderdale. Her parents and her family are still here in Kansas City. And she was coming home to see them. And we set up a lunch. We knew it would be our only chance. It was the most nervous I'd ever been in my life. I felt like I was going on a first date or something.

Steve Kraske

Why do you think you felt that way?

Dr. John Lantos

I wanted her to like me. Isn't that funny? Here I was offering to save her life. But... I wanted her to look at me and think, yeah, I want her kidney.

Steve Kraske

John, how many people, living people in this country, donate organs each year just the way that Martha just did?

Dr. John Lantos

That's a good question. Kidney is the most common, and that's about 500. The other potential living organ donations are more complicated, more risky, and therefore more rare. You can donate part of a liver, you can donate part of a lung, but I think the numbers for those are in the double digits every year.

Steve Kraske

Where's the greatest need?

Dr. John Lantos

The circumstances are different medically because for kidneys, there is dialysis, which keeps people alive. If you need a heart transplant, you know, I mean, there are some devices, but the urgency is greater. Liver is probably the greatest of all since there's no organ replacement therapy for

Steve Kraske

that.

Dr. John Lantos

But kidney failure is the most common of the bunch.

Steve Kraske

There's also organ donation by donors who have died, John, obviously. I assume that's more common?

Dr. John Lantos

Still much

Steve Kraske

more common, yep. But by what kind of factor?

Dr. John Lantos

Three or four to one. And that's where the driver's license checkoffs come, or more likely, if you have a loved one who's dying, there are organ procurement agencies around the country. It's organized by the federal government. There's an organization called United Network of Organ Sharing that coordinates allocating donors that are donated from someone who's died. Those don't go usually to someone you know. They go into a pool and they're allocated to the person on the list who needs them the most.

Steve Kraske

You know, I know, John, from past programs on this topic that determining who gets a donated organ is intensely controversial as well. How does that process work? Or it varies around the country, I think.

Dr. John Lantos

There are regions. It varies a bit around the country, although the general rule is the same from region to region. Applying the rule is a little complicated, but the general rule is to give it to the person who has the most dire need, that is, who's closest to death, but also not so close that the transplant won't do any good. So there's this interesting tipping point. If you get sicker and sicker and sicker, you go higher up on the list until you get too sick, and then you could... drop off the list. But in general, the idea is to take the kidneys and send them where they're most needed. It's regionalized because you can only travel so far and take so much time before the donated organ starts to lose function or be harmed by being out of the body.

Steve Kraske

Martha, what kind of prep did you have to go through as a living donor to prepare for your procedure?

Dr. John Lantos

really they didn't ask very much of me at all in terms of medical preparation um i kept having to send lab kits up to mayo have blood drawn some things like that to keep going through testing and screening um within 30 days of donating you have to send blood up for an hiv aids hepatitis screen because you don't want an infected organ right an organ that could kill your recipient to get um to get transplanted accidentally i guess if i had chosen to contract one of those diseases immediately after that blood test they would never know but they at least um scope that pretty pretty i did have to go up to mayo the day before the transplant and again spend a whole day of tests one last round to be sure that nothing about this surgery would harm me and then they gave me a prescription i took it down to their to their pharmacy in the basement I had to get two bottles. One was an antiseptic soap, of course, to scrub, scrub, scrub the night before. And the other was an entire bottle of laxative, which I had to chug the night before. So that was the extent of my prep, sort of like a massive cleanse inside and out.

Steve Kraske

You know, what's coming through to me in this conversation, Martha, are a couple points here that one thing for sure is that the payoff for making a donation is great. But the determination you need to go through with this as a potential donor is almost as great. I mean, you really had to be determined to get this done.

Dr. John Lantos

I had to work it really hard. And for the folks who know me, I'm a really determined person. I have a Harvard MBA. I'm a project manager at heart. I don't let things get in my way. I'm a problem solver. But isn't it a shame that that's the system? As we talk about in Kidney to Share, there are so many people who need a kidney. And in fact, kidney disease disproportionately affects the African-American community, two to one, and the Latino community, about half again that much. And here we are saying, if you want to save your family member, your friend who's a member of that community, we're going to make it so hard. that there's probably gonna be significant drop off. Even people who are willing to go through surgery, people who understand what this could possibly do to their own health. As John mentioned, in the end, my husband took 18 days off work to accompany me to do this. I was retired, but if I hadn't been retired, it'd been 18 days for me too. And it was over $4,000 in out-of-pocket expense. We were very fortunate. My recipient was in a position to reimburse us for that, and that's allowed under the law. But think of, I mean, how many people have an extra $4,000 and 18 days of paid work time off just to do a really nice thing for someone else? John and I feel really strongly that the system needs a lot of work. I

Steve Kraske

was going to say, John, is the medical community taking a hard look at the system and thinking we've got to make some changes here?

Dr. John Lantos

Lots of transplant centers have been advocating for changes. It runs into this complicated question about when reimbursement becomes payment and when we slide into markets for organs, which raises a whole different set of issues. There's fear that paying people to donate will be another form of coercion.

Steve Kraske

But I mean, all the different precautions that Martha had to take, the testing, the you know, it just sounded to me like it's a little bit over the top.

Dr. John Lantos

That is part of this attempt to reduce the risk for donors. So some of it is perhaps too risk averse, but it's done in the name of careful screening in order to make sure that no donor dies. Those are good ideas. They could be done, as we point out in kidney to share, they could be done more efficiently, more conveniently, and some of the barriers, including the expenses, could be dealt with in a way that would facilitate donation rather than erecting barriers that make it harder to donate. So we think there are solutions. Some transplant centers are looking at them. It may take some federal legislation to alter the rules a bit and perhaps provide reimbursement for expenses through Medicare. allow insurance companies to pay. That doesn't exist now, but it could.

Steve Kraske

John, is there a maximum age for a donor, a living donor?

Dr. John Lantos

So far for kidneys, the oldest ever recorded is an 84-year-old man. Wow.

Steve Kraske

Wow. So the sky is almost the limit here then. Yeah. Veronica tweeted us this. Why is it legal to pay plasma and egg donors, but not other organs, John?

Dr. John Lantos

Yeah, for... I got

Steve Kraske

like 20 more seconds here too, I'm sorry. Reasons

Dr. John Lantos

lost in history, organs that regenerate are marketable and organs that don't are not.

Steve Kraske

Okay, okay. Well, interesting conversation. The Kansas City Public Library will host a virtual author event at 630 May 26th on their online platform. The RSVP link will be posted soon on the library website. That's 630 on May 26th, the Kansas City Public Library. For more information, I want to thank Dr. John Lantos, the Glasnap Family Foundation Endowed Chair in Bioethics. John, always good to have you here. Thanks so much.

Dr. John Lantos

Thank

Steve Kraske

you, Steve. Martha Gershon, again, a principal at MG Consulting. She's a living donor herself. Martha, thanks for sharing your story.

Dr. John Lantos

Thanks for having us.