24-May-2019 / Kidneys: How to Save a Life
[INTRO]
CLIP <DYLAN MATTHEWS>: We're going to the transplant center at Hopkins Hospital in Baltimore. And I'm here to get checked up and meet my surgeon before I give my kidney to a stranger.
[THEME]
DYLAN MATTHEWS (Vox Reporter): I’m Dylan Matthews, I’m a writer at Vox and I host the Future Perfect podcast. I first started thinking about donating my kidney when I was 19. I was a sophomore in college I think I read an article in The New Yorker called “The Kindest Cut.” It was by Larissa MacFarquhar and it was about people who gave their kidneys to strangers.
SCORING - NEUTRAL IRENE
DYLAN: And it just seemed obvious I should do this. If you need a kidney that probably means you’re on dialysis. And if you're on dialysis that means your kidneys failed. If you're on dialysis you're hooked up to a machine for four hours a day, three days a week typically. That's typically in a dialysis center or a hospital. It's a physically exhausting process. You typically can't hold down a job. The death rate with dialysis is 25 percent in the first year and about two thirds within five years. That's about the same as brain cancer. So you have a deadly disease. And if you’re in that situation you're on dialysis and you get a kidney from someone, typically your lifespan increases by 10 years. So just like, looking at the math I'm able to extend the life of someone by 10 years, the risk of death in surgery for someone like me who doesn't have high blood pressure is about one in ten thousand. It increases my odds of kidney problems which you would expect but not that much. And I still have a 99% chance of being OK kidney-wise. Like the way I thought about it is just… what do I have that's going on that I shouldn't take this small risk to myself to give someone 10 years.
SCORING OUT
DYLAN: It's a long process and I documented a lot of it using my phone, taking video diaries. Joss Fong on our video team wanted to make a video about it, and I thought that would be a good idea to show people what the process is like, and so she and I were filming stuff sort of as we went. The big thing is that they have to make sure that your kidney is working reasonably well.
CLIP: <DYLAN> At this point I've done two 24-hour urine collections which are as gross as they sound, and the results were inconclusive. So now I'm gonna go get some radioactive particles shot through my kidneys.
DYLAN: They just put me in a room at the Hopkins Hospital and a variety of specialists came in so there was a social worker who is going to be my advocate. There was a psychologist to make sure I was of sound mind and no one was pressuring me. There was a kidney specialist who came in to make sure I wasn't taking any medications that would be bad to take on one kidney. I met the surgeon. Eight hours of meetings with various people on various aspects of this. I had to wait a few weeks and then I finally got approval, they mailed me a letter saying that I was approved to donate. I took a little video of myself reading the letter with my cat.
CLIP: <DYLAN> So this is a letter I got today from Hopkins. “Dear Dylan, you have been approved as a kidney donor by our multidisciplinary transplant team at the Johns Hopkins Hospital. On behalf of the Johns Hopkins Comprehensive Transplant Center thank you for coming forward as a living kidney donor and we look forward to assisting you through your donation.”
DYLAN: And even then it took a few months at least to schedule when I was going to do it because I wanted to do it so that I could set up what's called a “chain”.
SCORING - LET ME EXPLAIN
DYLAN: If you need a kidney and you have a loved one who is willing to donate to you but you're not a match biologically, there's probably someone out there that they are a match to. The idea with the chain is that you can get that person to donate if you can promise their loved one would get a kidney. You set up a chain where their loved one gets a kidney, and they get it from someone who also has a loved one who needs a kidney. And on and on and on.
SCORING BUMP
DYLAN: That has to sort of end somewhere. There aren’t infinite kidneys in the world. It has to end with someone who's willing to give a kidney and doesn't need a kidney back. So that's where people like me who can donate to a stranger and not expect a kidney in return can come in and be helpful. These can go really, really long. There's a guy in California named Rick Ruzzamenti who did a chain that got 30 people kidneys.
SCORING BUMP
CLIP: <NEWS> One Good Samaritan steps forward to help the sick, setting off a chain reaction of selflessness, linking 30 people who were willing to give up an organ with 30 who needed a donation to survive.
CLIP: <RICK RUZZAMENTI> I wanted to help somebody who needed a kidney and I had an extra one, I mean it was really simple. It just made sense. No big deal.
DYLAN: I knew I wanted to do a chain like that because it was a unique thing that someone in my position could do.
SCORING SWITCH AND SCORING BEGINS TO SLOW, REVERB, FADE
CLIP: <DYLAN> It's all happening. There's someone I've matched with and there's a time set for him during the surgery. And that's part of a chain with four transplant centers. And yeah. It's exciting.
SCORING OUT
CLIP: <DYLAN> I'm pumped and uh, yeah. Yeah. <Laughs>
DYLAN: The surgery was on a Monday. My girlfriend Hannah and I and my dad went up on Sunday on the train. Got a hotel. We had to be up at I think it was 3 a.m. Took an Uber over, got mocked up, got in scrubs.
CLIP: <DOCTOR> Dylan we already marked your belly, on the left side. [Inaudible] We have to mark your left side...
<DYLAN> OK
<DOCTOR> Before we go back.
<DYLAN> My left or your left?
<DOCTOR> Your left.
<DYLAN> Ok. We should probably clear that up. <Laughs>
DYLAN: Met my anesthesiologist, got some needles put in me for general anesthesia.
CLIP: <DYLAN> So it looks like I’m getting an IV in next and then my dad and Hannah can come back in and visit. And I'm supposed to give my glasses to my dad. That's very important.
DYLAN: And then I don't remember anything else.
ALL SOUND REVERBED OUT
[BEAT]
SFX IN
DYLAN: My dad and my my girlfriend were in the waiting room, patiently waiting to see what would happen. And the the surgeon got out and said to them, “Dylan has a beautiful kidney. It's gorgeous. It's on its way.” And they’re like, “Is he okay?” And he was like, “Oh yeah, also he's okay.” <Laughs>
SCORING - MELODICA #2
DYLAN: Next thing I know it's a couple hours later I've woken up in a recovery room. Everything hurts. This is sort of the worst moment of recovery is is right when you're out of it. It's mostly the carbon dioxide that they pump into your stomach.
SCORING EQ CHANGE
DYLAN: The way that abdominal surgery often works now is three small incisions. One of them is for a camera. One of them is for tools and then they had what's called a “handport” that the surgeon put his hand through so that he could get the kidney and pull it out. The way that they can do this is that they pump your stomach full of CO2 so that your abdominal wall lifts up, so that they can survey the landscape and see where they're going. And so the hard thing was the gas pain, just like having CO2 gradually reabsorbed, hitting nerve endings. So I would get these sharp shoulder pains. The first day was rough as that probably indicates. But it's one of those things where each day is exponentially easier than the last.
SCORING EQ STARTS COMING BACK
DYLAN: Initially I was not allowed to drink anything. And so the most that they would let me do is dab my lips with ice so that I would not feel totally dehydrated. But by the next day I was drinking water, jello, gradually building up to solid foods. They make you do a lot of walks to help reabsorb the carbon dioxide. I remember getting lapped a lot by a guy in his 80s who seemed really psyched to be lapping a 26-year-old. <laughs> They made you do all these coughs as an exercise to make sure you're breathing right. And there was a teddy bear that you have to hold to your stomach. And do coughs to make sure your lungs were going well.
CLIP: <DYLAN> I have to do coughs with my cough buddy. Three times an hour. <Coughs>
DYLAN: They also had another thing that was like a lung capacity exerciser where you had to inhale and get this little ticker within a certain region on this little contraption to make sure that you were breathing right.
CLIP: <DYLAN> <Breaths & sound of contraption> And so on. Apparently that keeps me from getting pneumonia. Science is a magical thing.
DYLAN: One of the things that I had to do before they let me out was they had to make sure that I was peeing right because your kidney is part of the urinary system. So I would like go and pee and be like “Hey, I peed,” and they're like “We have to double check” and that they would ultrasound my bladder. They were like “There's still some pee left. You can't fool us. We know there's still pee in there. We’re nurses. We have our ways.” <chuckles> After I recovered a little bit, Janet Hiller, who was our administrator who did kidney chain operations, showed me that my kidney was healthy it looked good and that they had shipped it to Cincinnati for someone to receive.
CLIP: <JANET> So here's Dylan. His kidney went to the Christ Hospital in Ohio. And then the Christ Hospital donor went to Georgetown, D.C. Then the Georgetown donor went to a recipient at UCLA in California and then the UCLA donor went to University of California San Francisco for... the last person would have been someone on the waiting list.
SCORING OUT
DYLAN: I remember Janet telling me before I did it the people she talked to had donated said there's some point and it might be three weeks in, it might be four weeks in, it might be five weeks in… and you just wake up and you realize you feel normal again that you don't feel like you're recovering from something. And about four weeks and that happened. I woke up I was like, “Yeah. That was a good feeling.” And by that point I was back to work. I was I was eating normally. And one of the things they ask you when you donate is do you want to meet your recipient. I sort of of two minds on this I thought would be very meaningful to meet him. I was also very wary of setting up a weird sense of obligation. Like, he doesn't owe me anything. I didn't do this to help a specific person. I just thought it would be a good thing to do. And so I was tempted to do it totally anonymously, but I eventually decided if they want to get in touch, I'm open to that. And so in March about six months after I donated Janet send me an email with a copy of a letter that the recipient had sent her.
CLIP: <DYLAN> I got a letter from my recipient. He was on dialysis for 15 months: “I’m in relatively good shape physically and have high hopes to now live perhaps 20 or 25 years with a kidney which you so graciously gave, which was an excellent match for me.”
SCORING - FRAUDULENT WEATHER
CLIP: <DYLAN> “Let me say again ‘thank you’ from the bottom of my heart and assure you I will take most excellent care of your kidney.” That’s all I can really ask.
SCORING BUMP
[MIDROLL]
SEAN RAMESWARAM (Host): Dylan, as a person who has had some bad experiences with surgeries I am not afraid to admit that surgeries kind of scare me. I don't think I'm alone in this world. That surgery is scary. It's not like donating blood. You weren't scared of surgery?
DYLAN: Yeah, I'm a weird person in certain ways and so was probably less scared of it than the average person. Like, when I got my wisdom teeth out I had them not knock me out because I wanted to watch them do it and see how they did it.
SEAN: <Laughs>
DYLAN: And if you don't have that kind of relationship to surgery it seems scarier. But it's really not that bad. And you do have to go under you're under general anesthetic and everything that that entails but you're out of the hospital in a few days. I came out and stuff hurt for a while but things were still basically all right.
SEAN: Okay so as a weird person who's okay with being in a somewhat painful situation. Are you comfortable assessing the risks of a kidney surgery.
DYLAN: I know the numbers. I don't I'm…
SEAN: <Laughs>
DYLAN: I don't feel like I am emotionally on the same wavelength as most people reading the numbers. I read the numbers I'm like, obviously I should do this.
SEAN: What are the numbers?
DYLAN: The benefit is you add nine or 10 years to the average lifespan of the person you're giving it to.
SEAN: Yeah.
DYLAN: The biggest risk that you worry about is dying, obviously.
SEAN: In the surgery itself.
DYLAN: In the surgery itself, but it happens super, super rarely. The number is three in ten thousand, and one in 10,000 if you don't have hypertension.
SEAN: This is in the United States?
DYLAN: This is in the United States.
SEAN: Hmm.
DYLAN: The way that one doctor put it to me is like if someone dies in surgery it's gonna be on the news. It's like a major event, but if you are a person who can get pregnant, your risk of preeclampsia and certain complications in pregnancy does go up.
SEAN: Hmm.
DYLAN: The really significant in your life risks are concentrated among people with uteruses which is not fair, but is something that I try to say to women, trans men who might be interested in doing this.
SEAN: What about like giving away a kidney making you at higher risk for kidney failure at some point? Is there a risk there?
DYLAN: It does do that which it would be sort of surprising if it didn't.
SEAN: Yeah.
DYLAN: But here's the thing. If you're donating a kidney you've passed this battery of tests for kidney health and you’re a lot healthier than the average person. So, the average American the rate of kidney failure eventually at some point in your life is three percent.
SEAN: Yeah.
DYLAN: And for people who've donated a kidney it's 1 percent.
SEAN: Hmm.
DYLAN: What's more, if you do get that situation, you get bumped up to the top of the transplant list.
SEAN: You know after tragedies, after major traumatic events where people are injured, people die you always see this, like, uptick in blood donations and people coming out to do whatever they can. Has there ever been an event where you saw an uptick in kidney donations or could there ever be some such event like that?
DYLAN: I’m not a nephrologist so I don’t want to rule things out entirely, it’s just really hard for me to imagine. Most kidney failure is due to things like type 2 diabetes and obesity in the United States. It's the sort of lurking chronic condition that never emerges all at once in one big tragedy. It's sort of a slow grinding tragedy that's happening in the background.
SEAN: Does that mean that there will always be this sort of struggle to find kidney donors?
DYLAN: I think it means that to some degree and also like a blood donation doesn't even like change your day appreciably... <laughs>
SEAN: Unless you're a wuss like me when you pass out you know?
DYLAN: Yeah. Well, and the other thing about blood is that it's legal to buy and sell blood in the United States.
SEAN: Right.
DYLAN: When things get really bad they can just go and buy a bunch more blood. And so it's both more necessary but also a much more dramatic thing.
SEAN: And if kidneys went that way in America, could we end up creating a system where certain people have an easier time getting organs than others?
DYLAN: Totally. And I think this is a huge fight within the kidney world. They're very vocal people who oppose monetary compensation for kidneys. There are people who are very ardently in favor.
SEAN: And how much would a kidney go for?
DYLAN: A kidney would go for like 60 or 70 grand.
SEAN: Wow. So that's like a game-changing amount of money for some people?
DYLAN: Well here's the thing. We have Medicare for All in America for one disease.
SCORING - TOSSING AND TURNING
DYLAN: Richard Nixon said no matter what your situation is Medicare pays for everything kidney failure related. It was this weird law he did in the 70s. So Medicare has to pay for dialysis for everyone, which is like ungodly expensive and transplants save so much money compared to that that they're willing to shell out 60, 70, 80 grand and that would still save them a lot of money. It's not a question of do we commodify it or not. It's already commodified. If you're a rich American you can get a kidney. You just go to India or South Africa or someplace in Brazil but it becomes this debate almost like the drug debate in the United States. We know this is happening. As long as rich people get kidney problems they're going to be going and creating these markets. Is there a way that we could use that mechanism in a way that protects the well selling kidneys or donating kidneys in exchange for compensation. And that prevents abuses and prevents it from being a free for all?
SEAN: Is there a way?
DYLAN: So my ideal world solution which is many many eons from, from being a reality would be to have Medicare be single buyer so they would pay out 60 or 70 grand to people who donated a kidney and then they would assign those kidneys on the basis of need. The rich people couldn't cut the line and there would be a really hard minimum of, I would even be willing to go like way above 60 or 70 and do, like, 100 grand or something. I wouldn't have felt exploited if someone gave me a ton of money in exchange for doing that. I didn't feel exploited doing it for free. And I think we have to be thinking about a way to increase donations that protects people and make sure that people are not being pressured into doing it and doing it out of desperation. But something like 40,000 people are dying every year in the United States because we don't have enough kidneys. It's a problem roughly on the scale of suicide or car crashes or gun deaths in the United States. We're arguing against a status quo that is like unbelievably horrible and it's hard for me to think that we couldn't figure out a system that's better than that.
SCORING OUT
SEAN: Do you think money would be enough to get people over the psychological hump of going under the knife to make a donation?
DYLAN: I think it would. People do wild stuff for money man <laughs>
SEAN: Right.
DYLAN: And like much much more dangerous. We allow people to be like loggers and big catch fishermen in Alaska. There was a good paper that some folks at Duke did comparing the legality of the National Football League and the illegality of kidney compensation.
SEAN: Huh.
DYLAN: Based on all we know being an NFL player is so much worse for your health than donating a kidney.
SEAN: Yeah <Laughs>
DYLAN: Like it's not even comparable.
SEAN: Right.
DYLAN: And we've agreed that because you get a ton of money for doing it, not only are we going to allow this but we're going to allow a whole secondary industry where you get paid nothing in college to do this in hopes that you might one day make some money doing this professionally.
SEAN: Yeah.
DYLAN: That's a decision we've made as a society. That's a physical risk we're willing to let people take in exchange for enough money.
SEAN: Now that you belong to, like, a community of people who have donated their kidneys do you feel like... I mean obviously there's like the privilege of health, but also was there another element of like your privilege that allowed you to do this?
DYLAN: Sure there are a bunch of things that I was lucky to have that helped a lot. Vox has unlimited medical leave.
SEAN: Hmm.
DYLAN: I didn't have any lost wages. That was a big privilege.
SEAN: Yeah.
DYLAN: I also was privileged to be in a job where I don't have to lift heavy objects. You can't lift anything over 10 pounds for several weeks after the surgery.
SEAN: Hmm.
DYLAN: If you're in a manual profession, if you're doing construction work, and also if you're a parent of small children who you have to pick up, that might not be something you're able to do. So I had the privilege of that not being a problem for me in my life.
SEAN: And like to just the person on the street who might find out that you did this in conversation or like see a scar and ask you what that is and they go like “Whoa! You gave your kidney away, like why would you do that?” Do you have like a stock answer?
DYLAN: My elevator pitch?
SEAN: Yeah. <laughs>
DYLAN: It seemed like an easy way to help another person a lot.
SCORING - LAYER BY LAYER
DYLAN: And then they ask you about how easy it is and I give my whole spiel about how it's not as bad as you think. But that's really the core answer: that it didn't cost me that much and it helped this guy a lot, and it helped his family a lot. And... I don’t know... that was enough for me.
SCORING BUMP
SEAN: Dylan Matthews is the host of the Future Perfect podcast at Vox. It’s all about finding radical ways to make the world a better place.
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