My kidney donation

I donated my left kidney to a stranger on April 9, 2024, inspired by my dear friend @Quinn Dougherty (who was inspired by @Scott Alexander, who was inspired by @Dylan Matthews). By the time I woke up after surgery, it was on its way to San Francisco. When my recipient woke up later that same day, they felt better than when they went under. I'm going to talk about one complication and one consequence of my donation, but I want to be clear from the get: I would do it again in a heartbeat.

Correction: Quinn actually donated in April 2023, before Scott’s donation. He wasn’t aware that Scott was planning to donate at the time. The original seed came from Dylan's Vox article, then conversations in the EA Corner Discord, and it's Josh Morrison who gets credit for ultimately helping him decide to donate. Thanks Quinn!

I met Quinn at an EA picnic in Brooklyn and he was wearing a shirt that I remembered as saying "I donated my kidney to a stranger and I didn't even get this t-shirt." It actually said "and all I got was this t-shirt," which isn't as funny. I went home and immediately submitted a form on the National Kidney Registry website. The worst that could happen is I'd get some blood tests and find out I have elevated risk of kidney disease, for free.^[1]

I got through the blood tests and started actually thinking about whether to do this. I read a lot of arguments, against as well as for. The biggest risk factor for me seemed like the heightened risk of pre-eclampsia^[2], but since I live in a developed country, this is not a huge deal. I am planning to have children. We'll just keep an eye on my blood pressure and medicate if necessary.

The arguments against kidney donation seemed to center around this idea of preserving the sanctity or integrity of the human body: If you're going to pierce the sacred periderm of the skin, you should only do it to fix something in you. (That's a pretty good heuristic most of the time, but we make exceptions to give blood and get piercings and plenty of other good things. Why not to give a kidney?)

Or people would say things to the effect of: You must have two for a reason — science just hasn't scienced hard enough! (And you know, there's a chance that's right, but right now the evidence seems to land strongly in favor of "it doesn't matter very much whether you have one kidney or two," and anyway, I'm willing to accept a small risk to myself given the payoff for the person receiving my kidney.)

Ultimately, the idea of removing something from your body to benefit someone else just tickles some people's disgust or "danger" receptors, and that makes sense. When we (humans) first started doing transplants, they were seen as morbid, against God's will. And then they were seen as, well, OK… but only if you were kin (for science reasons, not just superstition). Ireland only recently passed a law that lets people give kidneys to strangers if they're so inclined—the hundredth Irish person just donated her kidney to a stranger last year! And now it's fiercely debated whether people should be allowed to be compensated for giving of themselves in this way—with luck, we may finally see the End Kidney Deaths Act get passed soon (read Dylan's great article summarizing the opposition's arguments and why they're most likely wrong).

Wanting to donate a kidney is treated like a problem. Naturally, the hospital system is used to dealing with sick people. So every time I would log into MyChart to complete a Pre-visit Check-in, over the course of the months of screenings and blood tests, under "Health Issues" I'd see: Willing to be a kidney donor (funny). You really have to be persistent to get through the entire process.

But I was persistent, because for me, it seemed so obviously good to do this if I was able. I was working at the Forecasting Research Institute and had coworkers who were supportive of my taking off the requisite two weeks, three if I needed them. My husband (ex now, which we'll get to) was willing and able to care for me while I was in recovery. I have an incredible community here in Charlottesville—my friends Ashley and Mansi who work at the hospital and came to visit me, my friends and family who called me and brought food and flowers, my church community who held me in the light.

I was introduced by @AvitalM to Rabbi Aryeh Bernstein, leading up to my surgery, who had also given a kidney to a stranger. He wrote one of the essays in this absolutely wonderful book The Five Ounce Gift: A Medical, Philosophical & Spiritual Jewish Guide to Kidney Donation. Rabbi Aryeh said, "Isn't it miraculous that we're able to fulfill such a mitzvah?" and yeah, that's exactly what it is! Someone on the other side of the country desperately needed something that I could easily do without, and with the help of a lot of people at University of Virginia (I live in Charlottesville, VA), UCSF Medical Center, and the National Kidney Registry, I was able to give it to them.

The vetting process for donors seemed really slow. I started the ball rolling in August 2023: a simple form, family history, and shortly thereafter, a blood test. There are quite a number of hoops to jump through after that, and you're never given a list of hoops; every time you jump through one hoop, they tell you what the next one is. So imagine my surprise when I get the call: "That was the last hoop! How's April 9?"

I unlocked a chain of four kidney donations, if I remember right. Some chains are much longer! My recipient had a loved one who wanted to donate to them but was incompatible, so they promised to donate to someone else who had a loved one who wanted to donate to them but was incompatible, so they promised… etc. Sometimes the chain winds all the way around into a circle, but typically you need an altruistic donor to kick things off.

The day of, I got to the hospital at 5am. The kidney had to catch a 1pm flight from DC so we wasted no time. The last thing I remember is rolling into the surgery room and being surprised how many people there were. "How many people are in here?" I asked. I didn't think anybody answered. "How many people are in here?" I asked again. Then I blinked and I was in a different room, five or so hours later if I remember right. Everything had gone smoothly!

My surgery was on a Tuesday. Typically, I'm told, people spend one or two nights in the hospital. They want to make sure your bowels and bladder have woken all the way up before releasing you. I ate a lot of hospital jello (green is the best flavor) and read and drowsed and shuffled around the halls. You're encouraged to get up and do a few laps on the same day as your surgery, to help "move things around." My shoulders were crazy sore and I got conflicting stories from my nurses about it—air trapped in my abdomen bubbling... up to my shoulders?? or just wires getting crossed in my brain and it was actually my abdomen hurting?—but it was nothing to worry about.

Now I'm going to talk about something that decidedly did not go well, in agonizing detail. (Spoiler: bladder retention.) Feel free to skip down to "It's safe" if this doesn't sound like your cup of tea!

Every 30-45 minutes, for 48 hours after my surgery, I would really need to pee. Nurses or my then-husband Giulio would help me out of bed and I'd hobble to the bathroom. Giulio would diligently write on the white board the time and amount I peed, as instructed by the nurses. It was always less than 75 cc, suspiciously little given that the bladder can ordinarily hold 300-600 cc. The nurses came and went, recording the times and amounts on the computer, as well as the amount of water I'd drunk. I had pain around my lower abdomen (note: this is also where your bladder is), pushing through the opioids, but I put it down to the four-inch incision that had only just been stitched up.

We asked the nurses if the frequency and amount of pee was normal and they assured us that it was fine. At some point on the third day Giulio really pressed them and they did a bladder ultrasound after I'd "voided" (peed all the pee I could). It seemed normal, i.e. not a lot left in there, nothing to worry about. In hindsight, we know that this nurse didn't know how to do a bladder ultrasound.

Later that day a different nurse did another ultrasound, again after I had voided, and there was a lot of urine in my bladder. They put a catheter up there and stared in horror as the bag almost overflowed. New bag. There had been 1800 cc of urine in my bladder. It was extremely distended.

In case you don't know how kidneys are connected to bladders: this is very bad! In the worst case scenario, my bladder would have backed up into my single, solitary kidney. This might not have wound up being terrible, but it's certainly not ideal. The head nephrologist at UVA, whom I had never met before, came in with two other, unnamed people I had never met, and told me that I had to have had a preexisting condition that had been exacerbated by the anesthesia. This seems pretty bullshit, from what everyone I've talked to has said, including a nephrologist family member. The nephrologist family member said given my BMI (at the time, highish), her hospital would have kept me hooked up to a catheter for a day after surgery, which may have mitigated it.

Long story short, I got hooked up to a Foley bag and went home the following day, Friday, after three nights in the hospital. It wasn't too bad! I was up and about, taking walks around the block with the Foley strapped to my leg. I was scheduled to see a urologist the following week. She said this is just something that sometimes, rarely, happens after anesthesia, and it would resolve itself. It would take some weeks, maybe ten months she said—no telling. But what if, I asked her, hypothetically, it doesn't go away. What do we do then? She did not like this question. I tried asking her several different ways but she held fast: it would go away on its own.

Well, it did. I "cathed" (slang for sticking a catheter in your urethra) every few hours, recording what was left after each void. I cathed less and less frequently as my retention subsided, for six weeks.

Stupidly, the cathing was not nearly as annoying or painful as dealing with the bureaucracy during those six weeks—specifically dealing with the folks at UVA to get my recipient's insurance to cover the catheters^[3] and the urology appointments. UVA hadn't dealt with many non-directed donors, certainly not ones with complications. For non-directed donors, typically, the recipient's insurance covers everything, including treatment for any complications the donor may have. The truly painful and annoying part was every time I went in for an appointment, the person at the desk would say "And is [my insurance] the right insurance" and I would say "No" and they would say "Ok, whose insurance should we bill" and I would say "I can't say, but I know it's on your screen somewhere," and even then, more than a few times I STILL GOT A BILL and had to call my transplant team to make it right. That might seem like a minor inconvenience compared to the actual donation, but it felt like a twist of the knife.

(OK, it's safe.)

Nevertheless, of all the abdominal surgeries you can get, I definitely recommend getting a kidney out. You can't beat it! Two weeks after surgery, aside from the bladder issue, I was back to normal, modulo I was told not to lift anything heavier than a gallon of milk (they cut through some abdominal muscle to get to my kidney). I walked almost eight miles one day, went out with friends, did some light gardening.

I had laparoscopic (robot-assisted) surgery, and my kidney was taken out the front, which resulted in four scars: three very small scars where the robot arms went in, and the main, four-inch one right above my pubic hair. This is where C-sections happen, too. My surgeon Dr. Papageorge said, should I ever need one, they'll sort of reuse that incision.

Dr. Papageorge had done dozens of surgeries without the robot and dozens of laparoscopic surgeries. She said without the robot, it's like performing surgery with chopsticks, and "with the robot, it's like performing surgery with chopsticks with tiny robot hands at the ends" (here, she pantomimed the little robot hands). I loved my surgeon. She visited me every night after my surgery, and texted me pictures of my "beautiful" kidney. I'll happily share these pictures upon request.

All in all, my recovery was worse than almost any other donor's that I've heard or read about, and it really wasn't that bad. However…

I promised I'd talk about a "consequence" of my donation, which is a bit of an exaggeration. But I know of two other people who had long-term relationships end shortly after their kidney donation and it beggars coincidence. It's the risk nobody talks about! Worse even than CT scans!

Two weeks after my surgery, my husband told me he wanted to separate. We had been partners for nigh on twelve years, and my propensity for taking on responsibilities and projects had oftimes put a strain on our marriage, but he was always supportive, always there for me, up to and including the kidney donation project. He was an incredible advocate in the hospital, despite his abiding anxiety around blood and doctors.

But Giulio saw my kidney donation as impulsive and attention-seeking. It felt to him like I had rushed to the decision. I felt like it was 2-3 days of his time, weighed against 5-7 extra years of life for my recipient (beyond how long they would expect to live if they were just on dialysis until they died)^[4]—but that wasn't exactly true, nor the point. Giulio might have come around, but I didn't give him a chance. I felt an urgency about it that made no sense to him. Giulio's reaction to my charitable giving, my kidney donation, etc. was something like, "OK, that's obviously good, but it affects both of us." I felt like it was so obviously good that it didn't bear talking about; he just needed to get on board. In our relationship I could be a bit of a bulldozer.

There were also notes of "what's next" in Giulio's disapproval. If I give a kidney, what's next… Liver donation?^[5] If my EA friends jumped off a bridge, would I jump too?

I've been sitting on this draft for six months because I don't know what the point is. I gave a kidney away. It didn't go altogether smoothly. If I had it to do over again, I might have gone to Georgetown (2.5 hours from my house) instead of UVA (around the corner). Georgetown is one of the best places in the country to give a kidney away—they definitely do a lot more living donor surgeries than UVA.^[6] But that's all I'd do differently. I'm incredibly grateful to everyone who made my donation possible, most especially Giulio. His support and advocacy throughout the process, despite his disapproval, was nothing short of heroic. I hate to think what might have happened with my bladder if he hadn't been there. My donation may have catalyzed my divorce but I'm even grateful for that; it was bound to happen with or without my left kidney.

The day after my surgery, Dr. Papageorge told me my kidney had arrived on time and my recipient's surgery was successful, but that's all I know. If either of us wanted to be in touch, we'd write a letter and ask our respective transplant teams to pass it on. It's only if we both want to be connected that they put us in touch. My recipient hasn't reached out and I decided not to reach out, although I may change my mind. They might have rejected my kidney—this usually happens in the first six months after the surgery, with the first few weeks being the diciest.

It's been a little more than a year and most days, I don't think about my donation. But I love any excuse for a party, so I observed my one-year kidneyversary with cake and wine and friends.

1. ^{^}

    This just happened to someone.

2. ^{^}

    Thanks, comment section on Scott's kidney post! This meta-analysis from NIHR says: "Donors developed pre-eclampsia in almost six in 100 pregnancies compared to around three in 100 pregnancies in the control group (aRR 2.12, 95% CI 1.06 to 4.27; three studies)."

3. ^{^}

    I think the catheter people may never have gotten paid. Every time I ran low, I would call the catheter people and they'd call the UVA people and no one would know how to pay for the catheters and then the catheter people would just send me free samples. Only slightly nerve-wracking.

^{^}

 By Scott's reckoning, 10-20 extra quality-adjusted life-years. (Dialysis is miserable.)

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 Just kidding…. unless…..

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 I recently made a new altruistic donor friend Adder, who lives near Charlottesville and donated at Georgetown. Go Hoyas!

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