Becoming part of a chain of donations can unlock literally dozens of life-saving interventions. Dylan Matthews explains in Vox why he donated his kidney to a total stranger.
Matthews writes: “On Monday, 22 August, 2016, a surgical team at Johns Hopkins Hospital in Baltimore removed my left kidney. It was then drained of blood, flushed with a preservative solution, placed on ice, and flown to Cincinnati.
“Surgeons in Cincinnati then transplanted the kidney into a recipient I’d never met and whose name I didn’t know; we didn’t correspond until this past month. The only thing I knew about him at the time was that he needed my kidney more than I did. It would let him avoid the physically draining experience of dialysis and possibly live an extra nine to 10 years, maybe more.
“It’s not just him, though. We were part of a chain of donations that led to four people getting kidneys, all told. My recipient (let’s call him Craig) had a relative who was willing to donate a kidney to him. Unfortunately, the two didn’t match. So Craig and his relative agreed to a trade: If Craig got a kidney from somebody, his relative would still go forward and donate to someone else who needed a kidney.
“So the very same day that I donated, Craig’s relative had their kidney taken out as well and flown to the West Coast. This second recipient also had a friend or relative agreeing to an exchange; so did the third recipient, who got the second recipient’s friend’s kidney. Our chain will let people enjoy 36 to 40 years of life they would’ve otherwise been denied.
“Our four kidneys were pretty good, but some chains can go even longer. A chain started by a 44-year-old man in California named Rick Ruzzamenti wound up getting 30 people kidneys. Ruzzamenti’s chain let people live 270 to 300 years longer. You can literally measure the years of life his kidney donation chain gave in centuries.
And here’s the thing: This is not that hard to do. Not really. Anyone with an understanding employer with paid medical leave, and friends and family willing to support them in the recovery, can do the same thing I did. There’s a simple form that takes, like, five minutes to fill out, if you want to get started.
“I’d wanted to give a kidney for years – at least since I first heard it was possible after reading Larissa MacFarquhar’s New Yorker piece on “good Samaritan” kidney donors when I was in college. It just seemed like such a simple and clear way to help someone else, through a procedure that’s very low-risk to me. I studied moral philosophy as an undergrad, and there’s a famous thought experiment about a man who walks by a shallow pond where a child is drowning and does nothing, because leaping in to save the child might muddy his clothes.
“If I kept walking around with two kidneys, when there were more than 100,000 people on the kidney waitlist who would most likely die in the next five years if they didn’t get one, was I doing anything different from that man, really? Wasn’t I, like him, letting another person die to avoid a small cost to myself?
“I grew up in a Christian church that put a huge emphasis on social justice, on Christ’s message being one of radical empathy and selflessness. One passage that always stuck with me was Luke 3:11: ‘Whoever has two coats must share with anyone who has none.’ Well, I had two working kidneys. There were people with none. What to do next felt pretty clear.
“I had it in my head as a kind of abstract goal for years, but I kept putting off the donation. I couldn’t do it in college, since I couldn’t take the time off from exams and papers. I didn’t want to do it in my summers, when I was interning in Washington, DC. It just came to seem like such an extravagant step to take, one that I couldn’t find time for. This was just excuse-making, in retrospect. But it was effective excuse-making.
“Then I became friends with people who’d donated kidneys; first with Alexander Berger, who donated his kidney to a stranger when he was 21. Seeing that he was able to give a kidney and barely interrupt his career to do so was striking. I knew intellectually, before, that the costs of donating were small. Hanging out with Alexander, whose life post-donation was totally normal with no lingering side effects of the procedure at all, made the costs look and feel small, minuscule even.
“But Alexander works for a charity. Maybe his employer was unusually game for him to take time off for something wacky-sounding but altruistic?
“Then I made my second kidney donor friend: Ben Strahs, a bar trivia buddy of mine in DC whom I first met right after he donated. Ben is a programmer at Facebook; he’s a pretty normal guy with a job at a company like anyone else. If he could manage to take time off to do this, what was my excuse?
“And then there were just the raw facts – of how awful it is to need a kidney, how much good it does to receive one, and how little risk donation poses to donors. To be on the kidney waitlist, you have to have end-stage renal disease: Your existing kidneys have to be failing. Once you have end-stage renal disease, you have two options: dialysis or transplant. And since transplants are scarce, that usually means dialysis.
“Dialysis uses a machine to partially replace your kidneys’ waste-filtering functions, and it’s terrible. It reduces your quality of life in a profound way, and having to rely on it rather than a real kidney shortens your life span dramatically.
“Dialysis is usually offered three times a week, for four hours at a time. That means no traveling of any real length, since you have to be close to the machine. You can’t hold down a regular work schedule at an office or workplace – you have to be home (if you’re lucky enough to have a home dialysis machine) or at the hospital too often. Even part-time work is difficult because dialysis is physically extremely draining, and the vast majority of people on it report being fatigued. The rate of depression is more than double that in the general population.
“And it doesn’t work nearly as well as a human kidney. Dialysis can only replace about 10 percent of normal kidney function. One in four people on dialysis don’t survive a year – 67% die within the first five. That’s a five-year survival rate comparable to that of brain cancer.
“This is why getting a kidney is such a big deal: The recipient gains about a decade of life, on average. They get to see their children and grandchildren grow, to spend more time with their partner and their friends, and to escape a painful, exhausting procedure that would otherwise consume half their days.
“And the toll on the donor is tiny in comparison. The risk of death in surgery is 3.1 in 10,000, or 1.3 in 10,000 if (like me) you don’t suffer from hypertension. For comparison, that’s a little higher and a little lower, respectively, than the risk of pregnancy-related death in the US. The risk isn’t zero (this is still major surgery), but death is extraordinarily rare. Indeed, there’s no good evidence that donating reduces your life expectancy at all.
“There are occasionally complications in the hospital post-surgery, but the vast majority of complications that do happen are relatively minor, like a urinary tract infection or a fever. The most significant risk is the increased rate of preeclampsia (pregnancy-related high blood pressure and organ damage, often requiring premature delivery) in people who become pregnant after donating; giving increases the incidence from 5% to 11%.
“The procedure does increase your risk of kidney failure – but the average donor still has only a 1% to 2% chance of that happening. The vast majority of donors, 98% to 99%, don’t have kidney failure later on. And those who do get bumped up to the top of the waiting list due to their donation.
“The monetary costs are small or non-existent. In the US, the Medicare programme covers just about everyone with end-stage renal disease regardless of their age. Medicare is more than happy to pay for transplant surgery, which saves the programme tens of thousands of dollars in dialysis expenses. I paid nothing for my surgery or follow-up treatment. The closest thing to an expense was the cost of my dad flying down and staying in a hotel to be by me for the surgery. For families with more financial need than my own, the National Living Donor Assistance Centre can pay for travel and other donation-related expenses.
“All those risks and costs, stacked up next to the benefits to the recipients, felt so small, particularly for someone like me who won’t ever get pregnant and doesn’t have hypertension.
“I registered as a donor through the National Kidney Registry; you can also go through Waitlist Zero or the Alliance for Paired Kidney Donation. I researched transplant centres in my area, to see which ones did the most living donor surgeries and which had the best reputations in the field. I opted for Johns Hopkins, which is a bit far from where I live in DC but is a leader in research on kidney transplants and performs dozens of living donor transplants a year; high surgical volume is a good predictor of low complication rates.
“After filling out some paperwork and completing a psychological screening by phone to show I was of sound mind, I started going in for tests. Giving a kidney means getting a lot of blood taken out of you, often a few vials at a time. I wasn’t counting, but I wouldn’t be shocked if I had more than 100 vials drawn over the course of the whole process (over the course of months, this really isn’t a big deal). Luckily, I did the initial tests at a LabCorp in DC, so I didn’t have to schlep all the way up to Baltimore.
“The most invasive initial test is the 24-hour urine collection. That is exactly what it sounds like: You get a big jug, and you have to piss into it for a day. And it has to have all your urine: No cheating and going to a toilet. Suffice it to say I worked from home that day – and the day I had to do it again, because LabCorp couldn’t get a clear enough reading from my first try.
“But even the second day of me pissing into a jug, and capturing the overflow in water bottles, and then carrying them and the jug in the middle of a public street to a testing office like Howard Hughes wasn’t enough to get a clear reading.
“The test is meant to capture my glomerular filtration rate, the rate at which my kidneys filtered out waste products, specifically the product creatinine. Another way to do that is to have yourself injected with a radioactive tracer and then get regular blood draws to see how much of the tracer is left after a few hours. This is a totally safe procedure, but did entail a day spent working in a hospital waiting room.
“That, finally, was enough to show my kidneys were working properly. The next step was going up to Johns Hopkins for a day and holding court in an exam room, talking to a bevy of people on the transplant team. Throughout the day, a transplant surgeon, a psychologist, a nephrologist, and several nurses and social workers filtered in and out – walking me through what the procedure would entail, checking if I had any medications that would be affected, triple-checking I was mentally fit to consent to this and wasn’t being pressured or coerced in any way.
“It turned out I had to slightly change my antidepressant mixture (too much Wellbutrin is tough on the kidneys), and everyone who donates a kidney has to switch to acetaminophen (Tylenol) rather than aspirin or ibuprofen for over-the-counter pain relief for the rest of their lives. Neither of those seemed like a particularly big deal; my brand loyalty to Advil shouldn’t keep someone from getting a kidney.
“After the day of meetings, the transplant team got together to review my case file, and officially approved me as a donor. At that point, it was just a matter of matching with someone (not just on blood type but on a wide variety of antibodies they test for), constructing a chain, and scheduling. We settled on late August 2016; it was after the political conventions, so I wouldn’t be missing as much at work, and it worked for my girlfriend’s and dad’s schedules so they could be with me at the hospital.
“The process with the transplant centre took about five months from start to finish. I started working with Hopkins in March, finished my evaluations in mid-May, and was approved in June, before waiting another two months for a preoperative appointment and then the ultimate surgery. But all told it wasn’t that intrusive. I only had to go up to Baltimore three times before the surgery, I could get the blood tests done at a lab close to my office, and even the urine collection was more funny than anything else.
“After fasting for a day, I got up in my Baltimore hotel at 4:30 am on Monday, 22 August, and took a cab over with my extremely supportive dad and girlfriend to Johns Hopkins Hospital, where I was due in at 5:15 am.
“The surgery itself is minimally invasive, or ‘laparoscopic.’ The surgeon made three incisions: two small ones on the left side of my abdomen for a camera and surgical instruments respectively, and a few-inches-long ‘hand port’ cut around my belly button that he could use to pull the kidney out once all the veins and arteries had been snipped.
“The hardest parts of recovering, I found, had nothing to do with the actual cuts. The first thing you notice upon waking up is that you’re really hungry and thirsty; you spent the previous day fasting and haven’t had anything to drink in many hours. And you can’t eat or drink again right away; it can take a while for the digestive system to start up again after abdominal surgery. So initially I was limited to dabbing a Q-tip on ice and using that to wet my lips. That got better as I was eased back into eating, but it’s still the most desperately thirsty I’ve ever felt.
“I had plenty of painkillers available; I was initially hooked up to a drip of fentanyl, and then switched to Dilaudid when fentanyl made me nauseated. But painkillers don’t help with the worst pain after laparoscopic surgery, namely gas pain. So the surgeon can see what’s going on, laparoscopic procedures generally involve pumping you full of carbon dioxide to lift up the abdominal wall and give a clear view. That carbon dioxide is then slowly absorbed into your body, but not before applying pressure to various nerves and causing serious pain.
“The worst for me was my phrenic nerve, which extends from the neck down to the diaphragm. The CO² hit it at the lower point, and the result was sharp stabbing pain in my shoulders. This was all fine at night, as I figured out how to sleep more or less upside down on my hospital bed, so my legs were elevated and the gas would flow away from my diaphragm. But the best way to get your body to absorb the gas faster is to get up and walk around a lot, and with gas pain that’s pretty rough. I distinctly remember trying to walk around my hospital ward and getting repeatedly lapped by an older man who was clearly ecstatic to be owning a 26-year-old.
“Also embarrassing was discovering that many men, apparently including me, don’t have a really firm division between their abdominal cavity and their scrotum, so when the former is pumped full of the gas, the latter gets blown up like a carnival balloon. This is an extremely fun thing to explain to nurses, especially with your girlfriend and father both present.
“But the pain went away quickly. It was half as bad the second day as the first day, half as bad the third day as the second, and on the fourth day I was feeling well enough to go home. In fact, I could’ve gone home the day before if I hadn’t failed a bladder ultrasound (the nurses would periodically ultrasound my bladder to make sure all my pee was getting out; being hospitalised is a very dignified experience, all told).
“I vomited in the cab on the way home from Baltimore, and experienced some constipation my first week home. But other than that, I felt back to normal. And while I didn’t work the next week, it felt less like recovery than like vacation. The surgery didn’t slow me down.
“Before the surgery, one of the nurses told me that most patients get to a point, usually three to four weeks after the surgery, where they stop and realise that they feel completely normal again. I hit that point in my second week back at work. It was less that I felt something specific, and more that I didn’t feel anything weird or different anymore. My life was back to where it was pre-surgery. And it had happened really, really fast.
“Being able to do all this, to afford the time off work and the travel bills and hotel for my dad, is a reflection of privilege. Not everyone has an employer with benefits that generous, or good enough health to be able to donate to begin with. I know I’m profoundly lucky to be able to donate at all.
“And ‘lucky’ is really the right word. As I’m no doubt the first person to notice, being an adult is hard. You are consistently faced with choices – about your career, about your friendships, about your romantic life, about your family – that have deep moral consequences, and even when you try the best you can, you’re going to get a lot of those choices wrong. And you more often than not won’t know if you got them wrong or right.
“So I was selfishly, deeply gratified to have made at least one choice in my life that I know beyond a shadow of a doubt was the right one. I went through a week of serious pain and a mild recovery thereafter, and as a result, someone got off dialysis and gets to enjoy another nine, 10, maybe more years of life. My recipient and I recently opened up an email dialogue, and it just means the world to me – to both of us.
“It’s a strange bond, the one between donor and donee. And not just between us, but among all eight people who participated in the chain on 22 August, four donors and four recipients altogether. We barely know each other, but we’re literally linked by blood, by an operation that profoundly changed each of our lives. I have not regretted being part of that for a second.”Vox report