Alexander 2023 My Left Kidney
Alexander 2023 My Left Kidney
...
OCT 27, 2023
A person has two kidneys; one advises him to do good and one advises him to do
evil. And it stands to reason that the one advising him to do good is to his right
and the one that advises him to do evil is to his left.
— Talmud (Berakhot 61a)
I.
As I left the Uber, I saw with horror the growing wet spot around my crotch. “It’s not
urine!”, I almost blurted to the driver, before considering that 1) this would just call
attention to it and 2) it was urine. “It’s not my urine,” was my brain’s next proposal -
but no, that was also false. “It is urine, and it is mine, but just because it’s pooling
around my crotch doesn’t mean I peed myself; that’s just a coincidence!” That one
would have been true, but by the time I thought of it he had driven away.
Like most such situations, it began with a Vox article.
II.
I make fun of Vox journalists a lot, but I want to give them credit where credit is due:
they contain valuable organs, which can be harvested and given to others.
I thought about this when reading Dylan Matthews’ Why I Gave My Kidney To A
Stranger - And Why You Should Consider Doing It Too. Six years ago, Matthews
donated a kidney. Not to any particular friend or family member. He just thought
about it, realized he had two kidneys, realized there were thousands of people dying
from kidney disease, and felt like he should help. He contacted his local hospital,
who found a suitable recipient and performed the surgery. He described it as “the
most rewarding experience of my life”:
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. Maybe you should’ve picked another job, where you could do
more good. Maybe you should’ve gone to grad school. Maybe you shouldn’t have
moved to a new city.
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.
Something about that last line struck a chord in me. Still, making decisions about
internal organs based on a Vox article sounded like the worst idea. This was going to
require more research.
III.
Matthews says kidney donation is fantastically low-risk:
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 1. 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 [...]
The procedure does increase your risk of kidney failure — but the average donor
still has only a 1 to 2 percent chance of that happening. The vast majority of
donors, 98 to 99 percent, 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.
I checked the same resources Matthews probably had, and I agreed.
It was my girlfriend (at the time) who figured out the flaw in our calculation. She was
both brilliant and pathologically anxious, which can be a powerful combination: her
zeal to justify her neuroses gave her above-genius-level ability to ferret out medical
risks that doctors and journalists had missed. She made it her project to dissuade
me from donating, did a few hours’ research, and reported back that although the
risk of dying from the surgery was indeed 1/10,000, the risk of dying from the
screening exam was 1/660 .
I regret to inform you she might be right. The screening exam involves a “multiphase
abdominal CT”, a CAT scan that looks at the kidneys and their associated blood
vessels and checks if they’re all in the right place. This involves a radiation dose of
about 30 milli-Sieverts. The usual rule of thumb is that one extra Sievert = 5% higher
risk of dying from cancer, so a 30 mS dose increases death risk about one part in
660. There are about two nonfatal cases of cancer for every fatal case, so the total
cancer risk from the exam could be as high as 1/220 2. I’m not a radiologist, maybe
I’m totally wrong here, but the numbers seemed to check out.
I discussed this concern with transplant doctors at UCSF and the National Kidney
Foundation, who seemed very surprised to hear it, but couldn’t really come up with
any evidence against. I asked if they could do the kidney scan with an MRI (non-
radioactive) instead of a CT. They agreed 3.
The short-term risks taken care of, my girlfriend and I moved on to arguing about the
longer-term ones. One kidney starts out with half the GFR (glomerular filtration rate,
a measure of the kidneys’ filtering ability) of two kidneys. After a few months, it
grows a little to pick up the slack, stabilizing at about 70% of your pre-donation GFR.
70% of a normal healthy person’s GFR is more than enough.
But you lose GFR as you age. Most people never lose enough GFR to matter; they
die of something else first. But some people lose GFR faster than normal and end up
with chronic kidney disease, which can cause fatigue and increase your chance of
other problems like heart attacks and strokes. If you donate one kidney, and so start
with only 70% of normal GFR, you have a slightly higher chance of being in this
group whose GFR decline eventually becomes a problem. How much of a chance?
According to Matthews, “1 to 2 percent”.
The studies showing this are a bit of a mess. Non-controlled studies find that kidney
donors have lower lifetime risk of kidney disease than the general population. But
this is because kidney donors are screened for good kidney health. It’s good to know
that donation is so low-risk that it doesn’t overcome this pre-existing advantage. But
in order to quantify the risk exactly, we need to find a better control group.
Two large studies tried to compare kidney donors to other people who would have
passed the kidney donation screening if they had applied, and who therefore were
valid controls. An American study of 347 donors found no increased mortality after
an average followup of 6 years. A much bigger and better Norwegian study of 1901
donors found there was increased mortality after 25 years - so much so that the
donors had an extra 5% chance of dying during that period (ie absolute risk
increase). But looking more closely at the increased deaths, they were mostly from
autoimmune diseases that couldn’t plausibly be related to their donations. The
researchers realized that most kidney donors give to family members. If your family
member needs a kidney donation, it probably means they have some disease that
harms the kidneys. Lots of diseases are genetic, so if your family members have
them, you might have them too. They suspected that the increase in mortality was
mostly because of genetic diseases which these donors shared with their kidney-
needing relatives - diseases which may not have shown up during the screening
process.
Muzaale et al investigate this possibility in a sample of 96,217 donors. They were
only able to follow for an average 7 years, but used curves derived from other
samples to project up to 15 years. They found 34 extra cases of ESRD (end-stage
renal disease, the most severe form of kidney disease) per 10,000 donors who were
related to their recipients, compared to 15 cases per 10,000 for donors who weren’t
(the difference wasn’t statistically significant, but I think it’s still correct for unrelated
donors to use the unrelated donor number). They estimated a total increased risk of
78/10,000 per lifetime; although I can’t prove it, I think by analogy to the earlier
statistic this number should plausibly be ~halved for unrelated donors. So I think that
if anything, Matthews is overestimating how worried to be - the real number could
be as low as an 0.5 - 1% increase.
On the other hand, I discussed this with my uncle, a nephrologist (kidney doctor),
who says he sees suspiciously many patients who donated kidneys 30+ years ago
and now have serious kidney disease. None of these studies have followed subjects
for 30+ years, and although they can statistically extend their projections, something
weird might happen after many decades that deviates from what you would get by
just extrapolating the earlier trend. I was eventually able to find Ibrahim et al, which
follows some kidney donors for as long as 30-40 years. They find no negative
deviation from trend after the 20 year mark. Even up to 35-40 years, donors
continue to have less kidney disease than the average non-donor.
This isn’t controlling for selection bias - but neither was my uncle’s anecdotal
observation. So although it does make me slightly nervous, I’m not going to treat it
as actionable evidence.
Still, my girlfriend ending up begging me not to donate, and I caved. But we broke up
in 2019. The next few years were bumpy, but by 2022 my life was in a more stable
place and I started thinking about kidneys again. By then I was married. I discussed
the risks with my wife and she decided to let me go ahead. So in early November
2022, for the second time, I sent a form to the University of California San Francisco
Medical Center saying I wanted to donate a kidney.
IV.
Something else happened that month. On November 11, FTX fell apart and was
revealed as a giant scam. Suddenly everyone hated effective altruists. Publications
that had been feting us a few months before pivoted to saying they knew we were
evil all along. I practiced rehearsing the words “I have never donated to charity, and if
I did, I certainly wouldn’t care whether it was effective or not”.
But during the flurry of intakes, screenings, and evaluations that UCSF gave me that
month, the doctors asked “so what made you want to donate?” And I hadn’t
rehearsed an answer to this one, so I blurted out “Have you heard of effective
altruism?” I expected the worst. But the usual response was “Oh! Those people!
Great, no further explanation needed.” When everyone else abandoned us, the organ
banks still thought of us as those nice people who were always giving them free
kidneys.
We were giving them a lot of free kidneys. When I talked to my family and non-EA
friends about wanting to donate, the usual reaction was “You want to what?!” and
then trying to convince me this was unfair to my wife or my potential future children
or whatever. When I talked to my EA friends, the reaction was at least “Cool!”. But
pretty often it was “Oh yeah, I donated two years ago, want to see my scar?” Most
people don’t do interesting things unless they’re in a community where those things
have been normalized. I was blessed with a community where this was so normal
that I could read a Vox article about it and not vomit it back out.
This is surprising, because kidney donation is only medium effective, as far as
altruisms go 4. The average donation buys the recipient about 5 - 7 extra years of life
(beyond the counterfactual of dialysis). It also improves quality of life from about
70% of the healthy average to about 90%. Non-directed kidney donations can also
help the organ bank solve allocation problems around matching donors and
recipients of different blood types. Most sources say that an average donated kidney
creates a “chain” of about five other donations, but most of these other donations
would have happened anyway; the value over counterfactual is about 0.5 to 1 extra
transplant completed before the intended recipient dies from waiting too long. So in
total, a donation produces about 10 - 20 extra quality-adjusted life years.
This is great - my grandfather died of kidney disease, and 10 - 20 more years with
him would have meant a lot. But it only costs about $5,000 - $10,000 to produce this
many QALYs through bog-standard effective altruist interventions, like buying
mosquito nets for malarial regions in Africa. In a Philosophy 101 Thought Experiment
sense, if you’re going to miss a lot of work recovering from your surgery, you might
as well skip the surgery, do the work, and donate the extra money to Against Malaria
Foundation instead 5.
Obviously this kind of thing is why everyone hates effective altruists. People got so
mad at some British EAs who used donor money to “buy a castle”. I read the Brits’
arguments: they’d been running lots of conferences with policy-makers,
researchers, etc; those conferences have gone really well and produced some of the
systemic change everyone keeps wanting. But conference venues kept ripping them
off, having a nice venue of their own would be cheaper in the long run, and after
looking at many options, the “castle” was the cheapest. Their math checked out, and
I believe them when they say this was the most effective use for that money. For
their work, they got a million sneering thinkpieces on how “EA just takes people’s
money to buy castles, then sit in them wearing crowns and waving scepters and
laughing at poor people”. I respect the British organizers’ willingness to sacrifice
their reputation on the altar of doing what was actually good instead of just good-
looking.
I worry that people use suffering as a heuristic for goodness. Mother Teresa
becomes a hero because living with lepers in the Calcutta slums sounds horrible - so
anyone who does it must be really charitable (regardless of whether or not the lepers
get helped). Owning a castle is the opposite of suffering - it sounds great - therefore
it is fake charity (no matter how much good you do with the castle).
This heuristic isn’t terrible. If you’re suffering for your charity, then it must seem
important to you, and you’re obviously not doing it for personal gain. If you do
charity in a way that benefits you (like gets you a castle), then the personal gain
aspect starts looking suspicious. The problem is the people who elevate it from a
suspicion to an automatic condemnation. It seems like such a natural thing to do.
And it encourages people to be masochists, sacrificing themselves pointlessly in
photogenic ways, instead of thinking about what will actually help others.
But getting back to the point: kidney donation has an unusually high ratio of
photogenic suffering to altruistic gains. So why do EAs keep doing it? I can’t speak
for anyone else, but I’ll speak for myself.
It starts with wanting, just once, do a good thing that will make people like you more
instead of less. It would be morally fraught to do this with money, since any money
you spent on improving your self-image would be denied to the people in malarial
regions of Africa who need it the most. But it’s not like there’s anything else you can
do with that spare kidney.
Still, it’s not just about that. All of this calculating and funging takes a psychic toll.
Your brain uses the same emotional heuristics as everyone else’s. No matter how
contrarian you pretend to be, deep down it’s hard to make your emotions track what
you know is right and not what the rest of the world is telling you. The last Guardian
opinion columnist who must be defeated is the Guardian opinion columnist inside
your own heart. You want to do just one good thing that you’ll feel unreservedly
good about, and where you know somebody’s going to be directly happy at the end
of it in a way that doesn’t depend on a giant rickety tower of assumptions.
Dylan Matthews wrote:
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. Maybe you should’ve picked another job, where you could do
more good. Maybe you should’ve gone to grad school. Maybe you shouldn’t have
moved to a new city.
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.
…and it really resonated. Everything else I try to do, there’s a little voice inside of me
which says “Maybe the haters are right, maybe you’re stupid, maybe you’re just
doing the easy things. Maybe you’re no good after all, maybe you’ll never be able to
figure any of this out. Maybe you should just give up.”
The Talmud is very clear: that voice is called the evil inclination, and it dwells in the
left kidney. There is only one way to shut it off forever. I was ready.
V.
You might not be a masochist. But hospitals are sadists. They want to hear you beg.
After I submitted the donation form, I was evaluated by a horde of indistinguishable
women. They all had titles like “Transplant Coordinator”, “Financial Coordinator”, and
“Patient Care Representative”. Several were social workers; one was a psychiatrist.
They would see me through a buggy version of Zoom that caused various parts of
their body to suddenly turn into the UCSF logo, and they all had questions like “Are
you sure you want to do this?” and “Are you going to regret this later?” and “Is
anyone pressuring you to do this?” and “Are you sure you want to do this?”
After clearing that gauntlet came the tests. Blood tests - I think I must have given
between 20 and 50 vials of blood throughout the screening process. Urine tests -
both the normal kind where you pee in a cup, and a more involved kind where you
have to store all your urine for 24 hours in a big jug, then take it to the lab. “Urinate
into a jug” ought to be the easiest thing in the world, but some of the labs have
overly complicated jugs that I, with my mere MD, couldn’t always get right - hence
my experience accidentally pouring urine on myself in an Uber.
Then came the big guns. Echocardiogram. MRI. One of my urine tests was slightly
off, so I also got a nuclear kidney scan, where they injected radioactive liquid in me
and monitored how long it took to come out the other end (I remember asking a
friend “Can I use your bathroom? My urine might be slightly radioactive today, but it
shouldn’t be enough to matter.”)
Finally, five months after I originally applied, I got a phone call from the Transplant
Coordinator. The test results were in, and . . . I had been rejected because I’d had
mild childhood OCD.
This was something I’d mentioned offhandedly during one of the psych evaluations.
As a child, I used to touch objects in odd patterns that only made sense to me. I got
diagnosed with OCD, put on SSRIs for a while, finally did therapy at age 15, hadn’t
had any problems since. I still go back on SSRIs sometimes when I’m really stressed,
and will grudgingly admit to the occasional odd-pattern-touching when no one’s
looking.
But it’s nothing anyone would know about if I didn’t tell them! It was mild even at age
15, and it’s been close-to-nonexistent for the past twenty years! Now I’m a
successful psychiatrist who owns his own psychiatry practice and helps other
people with the condition! I told them all this. They didn’t care.
I asked them if there was anything I could do. They said maybe I could go to therapy
for six months, then apply again.
I asked them what kind of therapy was indicated for mild OCD that’s been in
remission for twenty years. They sounded kind of surprised to learn there were
different types of therapy and said whatever, just talk to someone or something.
I asked them how frequent they thought the therapy needed to be. They sounded
kind of surprised to learn that therapy could have different frequencies, and said,
you know, therapy, the thing where you talk to someone.
I asked them if they actually knew anything about OCD, psychotherapy, or mental
health in general, or if they had just vaguely heard rumors that some people were
bad and crazy and shouldn’t be allowed to make their own decisions, and that a
ritual called “therapy” could absolve one of this impurity. They responded as politely
as possible under the circumstances, but didn’t change their mind.
I wasn’t going to waste an hour a week for six months, and spend thousands of
dollars of my own extremely-not-reimbursed-by-UCSF money, to see a randomly-
selected therapist for a condition I’d gotten over twenty years ago, just so I could
apply again and get rejected a second time.
This was one of the most infuriating and humiliating things that’s ever happened to
me. We throw around a lot of terms like “stigma” and “paternalism”, and I’ve worked
with patients who have dealt with all these issues (it’s UCSF in particular a surprising
amount of the time!). But I was still surprised how much it hurt when it happened to
me. Being denied the right to control your own body because of some meaningless
diagnosis on a chart somewhere is surprisingly frustrating, even compared to things
that should objectively be worse. I thought I was going to be able to do a good deed
that I’d been fantasizing about for years, and some jerk administrator torpedoed my
dreams because I had once, long ago, had mild mental health issues.
So I gave up.
I spent the next few weeks unleashing torrents of anti-UCSF abuse at anyone who
would listen. This turned out to be very productive! When I was unleashing a torrent
of anti-UCSF abuse to Josh Morrison of WaitlistZero, he asked if I’d tried other
hospitals.
I hadn’t. I’d assumed they were all in cahoots. But Josh said no, each hospital had
their own evaluation process. Weill Cornell, a hospital in NYC, was one of the best
transplant centers in the country, and had a reputation for fair and thoughtful pre-
donor screening. Why didn’t I talk to them?
NYC was far away, and I hate to travel, but I was just angry enough to accept. At this
point I’d forgotten whatever good altruistic motivations I might have originally had
and was fueled entirely by spite. Getting my kidney taken out somewhere else felt
like it would be a sort of victory over UCSF. So I went for it.
Cornell was lovely. They tried to do as much of the process as they could via
Californian intermediaries, so that I only had to fly to New York twice. Their
psychiatrist evaluated me, listened to me explain my weak history of OCD, then
treated me like a reasonable adult who tells the truth and can handle his own
medical decisions. They were concerned that I sometimes self-prescribed Lexapro
to deal with anxiety. But we agreed on a compromise: I found another psychiatrist,
let her give me the exact same prescription of Lexapro at a much higher cost to my
insurance, and that resolved the problem.
So in late September 2023 - ten months after I started the process - I finally got fully
cleared to donate, surgery set for October 12.
VI.
I knew, in theory, that anaesthetics existed. Still, it’s weird. One moment you’re lying
on a table in the OR, steeling yourself up for one of the big ordeals of your life. The
next, you’re in a bed in the recovery room, feeling fine. The operation - this thing
you’ve been thinking about and dreading for months - exists only as a lacuna in your
memory. Not even some kind of fancy lacuna, where you remember the darkness
closing in on you beforehand, or have to claw yourself back into consciousness
afterwards. The most ordinary of lacunas, like a good night sleep.
There was no pain, not at first. The painkillers and nerve blocks lasted about a day
after the surgery. By the time they wore off, it was more of a dull ache. The hospital
offered me Tylenol, and I wanted to protest - really? Tylenol? After major surgery?
But the Tylenol worked.
Some people will have small complications (I am a doctor, pretty jaded, and my
definition of “small” may be different from yours). Dylan Matthews wrote about an
issue where his scrotum briefly inflated like a balloon (probably this is one of the
ones that doesn’t feel small when it’s happening to you). I missed out on that
particular pleasure, but got others in exchange. I had an unusually hard time with the
catheter - the nurse taking it out frowned and said the team that put it in had “gone
too deep”, as if my urinary tract was the f@#king Mines of Moria - but that was
fifteen seconds of intense pain. Then a week afterwards, just when I thought I’d
recovered fully, I got bowled over by a UTI which knocked me out for a few days. But
overall, I was surprised by the speed and ease of my recovery.
A few hours after the surgery, I walked a few steps. After a day, I got the catheter out
and could urinate normally again. After two days, I was eating “SmartGel”, a food
substitute that has mysteriously failed to catch on outside of the immobilized-
hospital-patient market. After three, I was out of the hospital. After four, I started
easing myself back into (remote) work. After a week, I flew cross-country.
. . . and then I got the UTI. If this section sounds schizophrenic, it’s because it’s a
compromise between an original draft where I said nothing went wrong and it was
amazing, and a later draft written after a haze of bladder pain. Just don’t develop
complications, that’s my advice.
Still, I recently heard from the surgeon that my recipient’s side of the surgery was a
success, that my kidney was in them and going fine - and that put things back into
perspective. To a first approximation, compared to the inherent gravity of taking an
organ out of one person and putting it in a second person and saving their life - it
was all easy and everything went well. When I look back on this in a decade, I’ll
remember it as everything being easy and going well. Even now, with some lingering
bladder pain, modern medicine still feels like a miracle.
VII.
In polls, 25 - 50% of Americans say they would donate a kidney to a stranger in
need.
This sentence fascinates me because of the hanging “would”. Would, if what? A
natural reading is “would if someone needs it”. But there are 100,000 strangers on
the waiting list for kidney transplants. Between 5,000 and 40,000 people die each
year for lack of sufficient kidneys to transplant. Someone definitely needs it. Yet only
about 200 people (0.0001%) donate kidneys to strangers per year. Why the gap
between 25-50% and 0.0001%?
Some of you will suspect respondents are lying to look good. But these are
anonymous surveys. Lying to themselves to feel good, then? Maybe. But I think
about myself at age 20, a young philosophy major studying utilitarianism. If someone
had asked me a hypothetical about whether I would donate a kidney to a stranger in
need, I probably would have said yes. Then I would have continued going about my
business, never thinking of it as a thing real-life people could do. Part of this would
have been logistics. I wouldn’t have known where to start. Do you need to have
special contacts in the surgery industry? Seek out a would-be recipient on your
own? Where would you find them? But more of it would have been psychological: it
just wasn’t something that the people I knew did, and it would be weird and
alienating for me to be the only one.
This is going to be the preachy “and you should donate too!” section you were
dreading all along, but I’m not going to make a lot of positive arguments. If 90% of
the people who answer yes on those surveys are lying to feel good, then only 3 - 5%
really want to donate. But bringing the donation rate from 0.0001% of people to 3 -
5% of people would solve the kidney shortage many times over. The point isn’t to
drag anti-donation-extremists kicking and screaming to the operating table. The
point is to reach the people who already want to do it, and make them feel
comfortable starting the process.
20-year-old me was in that category. The process of making him feel comfortable
involved fifteen years of meeting people who already done it. During residency, I met
a fellow student doctor who had donated. Later, I got involved in effective altruism,
and learned that movement leader Alexander Berger - a guy who can easily direct
millions of dollars at whatever cause he wants - had donated his personal kidney as
well. Some online friends. Some people I met at conferences. And Dylan Matthews,
who I kept crossing paths with (most recently at the Manifest journalism panel). After
enough of these people, it no longer felt like something that nobody does, and then I
felt like I had psychological permission to do it.
(obviously saints can do good things without needing psychological permission first,
but not everyone has to be in that category, and I found it easier to get the
psychological permission than to self-modify into a saint 6.)
So I’m mostly not going to argue besides saying: this is a thing I did, it’s a thing
hundreds of other people do each year, getting started is as simple as filling out a
form, and if it works for you, you should go for it 7.
When I woke up in the recovery room after surgery, I felt great. Amazing. Content,
peaceful, proud of myself. Mostly this was because I was on enough opioids to
supply a San Francisco homeless encampment for a month. But probably some of it
was also the warm glow of having made a difference or something. That could be
you!
VIII.
The ten of you who will listen to this and donate are great. That brings the kidney
shortage down from 40,000 to 39,990/year.
Everyone knows we need a systemic solution, and everyone knows what that
solution will eventually have to be: financial compensation for kidney donors. But so
far they haven’t been able to get together enough of a coalition to overcome the
usual cabal of evil bioethicists who thwart every medical advance.
My kidney donation “mentor” 8 Ned Brooks is starting a new push - the Coalition To
Modify NOTA - which proposes a $100,000 refundable tax credit - $10,000 per year
for 10 years - for kidney donors. There would be a waiting period and you’d have to
get evaluated first, so junkies couldn’t walk in off the street and get $100K to spend
on fentanyl. No intermediate company would “profit” off the transaction, and rich
people wouldn’t be able to pay directly to jump in line. It would be the same kidney
donation system we have now, except the donors get $100,000 back after saving the
government $1MM+.
(the libertarian in me would normally prefer a free market, but “avoid taxes by selling
your organs” also has a certain libertarian appeal)
This came up often when I talked to other donors. They all had various motivations,
but one of the things they cared about was being able to advocate for these kinds of
systemic changes more effectively. I personally have been wanting to push this in an
essay here for a while, but it seemed hypocritical to play up the desperate kidney
shortage while I still had two kidneys. Now I can support NOTA modification whole-
heartedly . . . full-throatedly? . . . it’s weird how many of these adverbs involve claims
to have still all of your organs.
This is also one of the answers to the question I asked in section IV: how do you
balance acts of heroic altruism that everyone will love you for vs. acts of boring
autistic altruism that will make everyone hate you, but which will accomplish more
good in the end?) Coalition To Modify NOTA is full of previous living kidney donors,
who are using the moral clout and recognition they’ve gotten to get attention and
change the system in an unglamorous way. I find this an admirable way of squaring
the circle: do the flashy heroic things to gain social capital, then spend the social
capital on whatever’s ultimately most important.
If you get one takeaway from this, let it be that those guys who bought the castle
were good guys. Two takeaways, and it’s that plus modify NOTA. Three takeaways,
and you should feel permission to (if you want) donate a kidney. You can sign up
here. 9 Feel free to email me at [email protected] if you have questions
about the process.
1 Further perspective: I’m 38, which gives me a 2/million total chance of dying per day. So
the likelihood that I would die during my kidney operation equals the likelihood that I
would die during a randomly chosen two months of everyday life.
2 Maybe, kind of. Our knowledge of how radiation causes cancer comes primarily from
Hiroshima and Nagasaki; we can follow survivors who were one mile, two miles, etc,
from the center of the blast, calculate how much radiation exposure they sustained, and
see how much cancer they got years later. But by the time we’re dealing with CAT scan
levels of radiation, cancer levels are so close to background that it’s hard to adjust for
possible confounders. So the first scientists to study the problem just drew a line
through their high-radiation data points and extended it to the low radiation levels - ie if
1 Sievert caused one thousand extra cancers, probably 1 milli-Sievert would cause one
extra cancer. This is called the Linear Dose No Threshold (LDNT) model, and has
become a subject of intense and acrimonious debate. Some people think that at some
very small dose, radiation stops being bad for you at all. Other people think maybe at
low enough doses radiation is good for you - see this claim that the atomic bomb
“elongated lifespan” in survivors far enough away from the blast. If this were true, CTs
probably wouldn’t increase cancer risk at all. I didn’t consider myself knowledgeable
enough to take a firm position, and I noticed eminent scientists on both sides, so I am
using the more cautious estimate here.
3 I told them I had an aunt who died of radiation-induced cancer. It’s true, but I feel
grubby for bringing her into this; I thought doctors would be more likely to listen to an
emotional story than cold logic.
4 EAs have been debating the exact effectiveness of kidney donations for a long time.
You can find good skeptical arguments by Jeff Kaufman and Derek Shiller, and good
arguments in favor by Alexander Berger and Tom Ash.
5 Outside of Philosophy 101 thought experiments, there’s a nonprofit that will often
reimburse you for lost wages from your donation.
6 Self-modifying into a person who can act boldly without social permission is a more
general solution and has many other advantages. But the long version involves living a
full life of accumulating moral wisdom, and the short version starts with removing
guardrails that are there for good reasons.
7 But here are some practical points you might not already appreciate:
You shouldn’t have to pay much money. If, like me, you need to travel (eg to New
York), kidney related charities will reimburse your travel costs (in theory, I haven’t
yet proven this, and a few costs were illegible and I decided not to submit them).
You shouldn’t have to lose too much money from work. Kidney-related charities
will pay for lost wages during recovery, again read the small print before trusting
this 100%.
You don’t need to worry about not having a kidney when a friend or family member
needs one. When you donate, you can give the organ bank the names of up to five
friends or family members who you’re worried might end up in this situation. In
exchange for your donation, they will make sure those people get to the top of the
list if they ever need a transplant themselves.
95% of donors say if they could do it all over, they would donate again. My
impression is the most common reasons people wouldn’t is because they donated
to a family member and it made things awkward (not a problem for nondirected
donations), or because they learned that the recipient died from the procedure
and that was too depressing. I asked that I not be told how my recipient did - most
likely everything would go well, I was happy to keep assuming this, and more
information could only make things worse. This request didn’t get communicated
to the surgeon and he told me anyway - but luckily everything did go well.
8 What’s a kidney donation mentor? I still don’t really know: I was told that I was assigned
him as a mentor, and every so often he called me and asked if I was doing okay. I
appreciate it, but hope it didn’t take him away from more important work.
9 Kidney donation is a complicated and exhausting process, and I couldn’t have done it
without the help of many other people. Thanking them in no particular order:
My ex-girlfriend, who helped me figure out to ask for an MRI instead of a CT.
My wife, who was amazing through the whole process and didn’t freak out at all.
My parents, who freaked out somewhat less than they could have, all things
considered. My father in particular, for giving good medical advice during my
recovery.
My cousin Harvey and his wife Pam, who let me stay at their house on Long Island
while I recovered, and their son Will, for visiting me in the hospital.
My uncle Mark for a quick nephrology consult.
Clara Collier, Georgia Ray, Taymon Beal, and Sam Rosen, for various forms of
emotional support and offering to visit/stay with me in the hospital.
Elissa F, Miranda G, and especially Dylan Matthews, for talking to me about
altruistic kidney donation, providing social proof of its acceptability, and letting me
know the option existed. Probably there are other people in this category, sorry if I
forgot you.
Fellow psychiatrist and ACX reader Dr. Brown, who covered my patients while I was
away.
Josh Morrison of WaitlistZero (now of 1DaySooner), who encouraged me and gave
me good advice.
The doctors, nurses, social workers, etc at Weill Cornell who did the actual work.
You were all great. Except the guy who said getting my catheter out “won’t be bad,
I promise”, I’m still mad at you.
The subset of doctors, nurses, social workers, etc at UCSF who were helpful
during the intake process there and weren’t responsible for their final decision not
to accept me.
Everyone who expected me to do things for them this past month and hasn’t made
a fuss about me being out of commission for a few weeks. That includes all of you
blog readers; sorry for the recent lack of articles. Normal business resumes next
week, situation permitting.
267 Comments
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Chronological
Having said that, there's one thing that the article never went into that you'd kind of
think would be front and center in any talk about transplants: rejection and
management thereof. If you give someone a new kidney but at the same time condemn
them to a lifetime of immunocompromise, how much have you really improved their
quality of life? The more you look at transplants, the more they look like a really terrible
thing that we only do because it's the least-bad option available at the moment, the
kind of thing that Dr. McCoy would scoff at and accuse us of being barbarians living in
the Dark Ages for practicing.
Out of curiosity, (I genuinely don't know and would be interested in finding out if
anyone's looked at this,) has there been any research done on questions along the
lines of "would it be more effective to donate a kidney and help one recipient, but we
know it works, or to fund stem cell research into own-organ cloning which could end
up solving the problem for everyone but is currently hypothetical?"
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Metacelsus Writes De Novo 59 mins ago
1. Everyone knows we need a systemic solution, and everyone knows what that
solution will eventually have to be: financial compensation for kidney donors.
Over the longer term, I'm highly optimistic about bioengineered human-compatible
kidneys grown in pigs.
2. I was getting worried when Scott didn't post much over the last few weeks. Now I
know why! And it's a very commendable reason. Thank you Scott for donating!
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Mr. Doolittle 54 mins ago
For what it's worth, I know two people who have recently gone through the process.
One dropped out late in the process, and the other successfully donated their kidney.
This is in the last ~6 months.
The one that dropped out felt very pressured by friends and family, and realized they
were not in a good life place to take the time off of work. I think they were scared as
well.
The one who donated seemed to have a fine time and was back at work well before
expected.
Both reported that a charity was going to pay their expenses, including lost wages. For
the one that went through with it, that seems to have worked exactly as advertised.
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Paula Amato 44 mins ago
Kind of related. I’ve always thought that “opt-out” (instead of opt-in) organ donation
on driver’s licenses for example, would help increase the supply of organs including
kidneys. But when I’ve talked to healthcare economists about it, they say it’s a bad idea
because it would bankrupt the health care system given the high cost of these
surgeries and the aftercare. Thoughts?
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averagethinker 14 mins ago
Obviously the castle people could have found cheaper, drabber options, and guests
would've been fine with it. I doubt there's a warehouse shortage. It seems EA folks
haven't learned much from FTX.
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averagethinker 12 mins ago
There's an implicit Peter Singer argument in here somewhere. I only have one kidney to
give, so by giving it to a stranger, I can no longer give it to a family member.
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Blowtorch Writes Blowtorch's Public Service Anno… 10 mins ago
Very honest post. I hope you get the likes from people you were looking for by
donating your kidney!
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