I donated a kidney to my father 10 years ago. It took about 4 weeks of recovery before I could get on a plane to fly home. Even 10 years later, I have not recovered to the same energy level I had before the surgery - something about the original surgery never quite healed right, and my kidney function gets monitored every 6 months or so at the doctor's office - I take a few medications to protect my remaining kidney. My father is still alive today because of it. It is important that if you do this, that you have plans and support. It is not for everyone.
You make an important point about planning and support, which is often overlooked in discussions about donation. Recovery can be unpredictable... What you’ve done for your father is extraordinary, and even though the cost to you has been significant, the fact that he’s alive a decade later speaks volumes about the value of that choice.
A family member had acute kidney failure back in the mid 60s, when kidney transplantation was still quite new in the UK where she lived. She was in her early 20s and it wasn't looking good as they had no donors.
Just as they were about to draw the line, a 17 year old kid who had been riding a motorbike was brought in, and fortunately for her it was a match.
After the transplant, she was told she most likely wouldn't turn 30. Turned that due to that message she decided to never have kids, as she was worried she'd pass away before the kid grew up. That was a real shame, as she had a long and quite normal life, almost reaching her 70th birthday.
Same here, except it turned out a bit the opposite. My grandmother died in her thirties during the mid-1960s from kidney failure since a transplant wasn't really an option in our small town. She left 7 kids at the time.
It is still an incredible challenge to find a donor though, and even if one is found, there is a high risk of rejection - we still have a long way to go in this area of medicine.
I've been told otherwise by my doctors (I'm on dialysis awaiting a transplant.) The drugs these days are so good that 99%+ have no issues with rejection if they take their drugs properly.
Hmmm...the senior doctor in my case spent a fair bit of time telling me about the medicines and making sure I was aware of how closely they need to be monitored and taken. In his setup, each patient is given a notebook with a template to track medicines and fluid intake/outgo etc. He won't see you post transplant unless you bring the book with the latest info!
(He is quite old - in his 80's. Will be retiring after the current set of patients are done with surgery + 1 year!)
I’m scheduled to donate one of mine to a stranger in a few weeks. Similar story here—saw Scott Alexander’s story, did some research, decided it was something i had to do.
I’m donating through the national kidney registry, which means that I (and five close family members) will pop to the top of the transplant list if I ever need one.
How long do you stay at the top of a transplant list?
My spouse recently had a kidney removed due to cancer (she's fine, caught it early).
If she ever needs a new kidney I've been hoping I'm compatible, we share the same blood type. However, if I can give up my kidney to move her permanently up the list, that's worth considering for me.
You'll want to confirm before you donate -- it depends on what hospital/organization you're donating through. In my case, I'm prioritized for being a donor and five of my family members are also prioritized. If a one of those family members receives a kidney out of need then I am still prioritized (effectively giving me/my family two kidneys for the price of one). Note that you can designate five family members to be prioritized, but only the first one in need will be prioritized.
This stays in effect as long as the NKR exists -- there's no expiry.
If you need to donate to your wife and aren't compatible, separate from the NKR vouchers, there are "kidney exchange" programs where pairs of people in that situation are matched with each other. So you'd donate to someone else, and at the same time someone would donate to your wife. Actually calculating the match among all those pairs is a fun NP-hard optimization problem.
It's a match-criteria-based list, so you stay at the top until you die or receive a matching transplant. If you are at the top of the list but don't match an available organ, the organ goes down the list to the highest match that can be brought to an operating room in time.
Edit: Geography is important too. The kidney can only survive outside of a (cardiovascularly-functioning) body for minutes at a time. If you are at the top of a list but the kidney is across the country and you don't have access to a private jet, it's going to someone else. This is the "loophole" that Steve Jobs used to get a liver transplant - Since he had a fleet of private jets available to him, he could be simultaneously listed for transplant on multiple lists.
No, organs for transplant can't be stored that way. They can only exist outside of a functioning human body for a handful of hours; they measure the times in minutes.
Was yours a living donor or deceased donor? In my case, they brought several recipients of different organs together in the same hospital so that the transplants could be carried out quickly. This was a deceased donor case though, so they may have had a tighter window to meet.
I feel like kidney gets attention because you have two of them, but the liver is also great for donation as it regrows. After a couple months, you’ll have just as much liver as you did before the procedure.
Since the FAQ doesn't give much information, this Stack Exchange answer[1] is more helpful, which links to a paper about liver transplant and includes this quote:
> Regeneration of the liver can be more correctly defined as compensatory hyperplasia where in the remaining liver tissue expands to meet the metabolic needs of the organism. Unlike anatomic true regeneration, the expanding liver does not regain its original gross anatomical structure.
Essentially, it's not the same kind of tissue so it won't work as well for a transplant a second time. I guess you could donate multiple non-translated parts of your liver and the remaining could compensate up to a point, but it's obviously risky and is why no doctor would accept doing a second one.
When I looked into live donor liver transplant, there was a 2% donor fatality rate which seemed quite material. Due to relatively small sample sizes, it's difficult to know if this 2% fatality rate is representative today. But in any case, live donor liver transplant is not a low-risk operation.
Discharged after just one day? That's brave. I was much more of a chicken and stayed for almost a week (even though the surgeon thought I could have left earlier, but on Friday (two days post-op) I didn't quite feel like it and there was no doc to sign me out over the weekend), payed in Germany by the health insurance of the recipient.
Spread the word, I say! I found the courage to donate one of mine to a buddy since a few years earlier a co-worker (thanks, Daryll!) mentioned that his wife donated (before committing, I checked with him on the long-term outlook and with my doc, who just shrugged).
It's seven years now and I can't tell the difference.
It's very frustrating that in Germany you are only allowed to donate a kidney if you can prove that you have a deep relationship with the recipient (family members, close friends...). Maybe these rules made sense when the operation came with great risks, but that doesn't seem to be the case anymore. It's okay to check that the person is doing it willingly and not because they got pressured but why am I not allowed to donate it to a stranger? Is adding years to their lifespan not enough of a motivation?
I believe (I wasn't in the country then and missed the public discourse) that those rules were put in place after some allegation regarding financial conflict of interest were made.
I had to speak to such a committee. I was not fond of that idea, willing to explain myself, but not to defend my decision. It turned out however, that this was rather a formality, the committee being three very friendly, well meaning and encouraging citizen.
But yes, the system in the US (donate to a pool, recipient receives from pool) seems preferable as in my case the recipient is not a perfect match for my organ and consequently (afaiu, but I know next to nothing about medicine and biology) has to henceforth take (fairly expensive) autoimmune suppressors.
I just think there are much better solutions to that. You could say that the donor can only control who gets the organ if they can proof a close relationship. Otherwise they cannot chose the recipient. I think that would allow donations to strangers while preventing coercion.
I was told that most donors at the hospital spend one night, and some spend two. Was your surgery laparoscopic? Mine was, which was part of why the recovery is so much faster compared to traditional donations.
> payed in Germany by the health insurance of the recipient
My surgery was also free, though I'm not sure who exactly paid the bill. The NKR will also cover any expense from future complications related to the donation.
> It's seven years now and I can't tell the difference.
Kidney disease runs in my family. Trying to find a donor while spending years on dialysis is brutal. Especially when the tests don't match. Heartbreaking to get your hopes up. Even worse when a friend steps up and they don't match.
Having seen two relatives go through this, I don't have words or thoughts to express how this feels. For you to do it, anonymously ... to thank you for this is beyond my awkward attempts at the English language.
I hope your life is absolutely fucking perfect from here on out. You deserve it.
One thing that would cross my mind before donating to a stranger: what if a family member of mine needed a kidney in the future, and my donation to a stranger in the past left me unable to donate to them?
See comment in this thread: „I’m donating through the national kidney registry, which means that I (and five close family members) will pop to the top of the transplant list if I ever need one.“
In the US, if you donate and later need a kidney yourself, they you will be put on the front of the transplant list. I believe it also applies if your family member needs a kidney also but I not certain.
> If you donate at a transplant center that partners with the National Kidney Registry and for any reason, need a kidney after donation, you will be given priority for a living don
Also its common that family members cannot be a compatible donor. For example I'm type O blood and all my living family members were not type O or had other health issues that would disqualify them. And kidney transplant chains are another thing. Each recipient has a donor that is not a direct match but will donate to someone else when their recipient gets a match. And a non-directed donor usually starts off the chain.
This is the first thing everyone thinks about before donating a kidney, I think.
I think some questions to add to this list:
What if your kidney isn't compatible with that of your family member, and they'd have to rely on a stranger's donation? How would you then feel about never having donated in the past?
What if you donate your kidney to a parent, only to find that a year later your child needs your kidney?
What if you donate your kidney to a family member and they later end up ruining your life?
There are so many "what-if" scenarios possible. Ultimately I think it boils down to probabilities vs effectiveness.
> What if your kidney isn't compatible with that of your family member, and they'd have to rely on a stranger's donation? How would you then feel about never having donated in the past?
Donation chains partially address this.
But more importantly, donation now means you and your family get bumped up to the top of the list if needed later.
Others have already answered, but I'll repeat it: you can designate five family members _before_ your surgery who can receive a kidney if they ever need one.
This isn't perfect as you're unlikely to know ahead of time who might need a kidney, and you're relying on the NKR to continue to exist.
Honestly though, this wasn't a factor in my donation. 100,000 people in the US need a kidney today -- this is more important than a possible need in the future. I understand that many don't share my viewpoint, though.
As relatively smoothly as it went the overall experience sounds more awful then any but the few worst I've ever had. I am not so noble as Mr. Shepherd, and I don't think I'm unusual in that reluctance. I agree with Mr. Berger, who also donated a kidney, but believes that relying on such sacrifice is "part of the problem":
The people waiting for kidneys aren’t dying because of kidney failure; they’re dying because of our failure — without Congress’s misguided effort to ban organ sales, they would have been able to get the kidneys they desperately needed. -- https://marginalrevolution.com/marginalrevolution/2011/12/organ-donors-for-compensation.html
Of course it's bad that they have to. But not letting them do it doesn't magically make the ends meet. Right now, today, people have to sell their organs to make ends, but they can't, so they fail to make ends meet.
Your argument amounts to rejecting marginal improvement because it's still not good enough.
No, the argument is that there is no "marginal improvement", it's that it's a net negative for society to have poor people need to sell their kidneys to make ends meet.
"it's a net negative for society to have poor people need to sell their kidneys to make ends meet."
This is, again, not something that is being remedied by the ban. The need hasn't gone away simply because you've taken away the option. People remain poor and struggling in today's world.
Elaine Perlman (the woman I first spoke to) is trying to incentivize kidney donations with a $10,000/yr tax credit for five years for donors. It seems like a reasonable proposal to me.
Indeed. The ideal is where all the rich people (hospital, transplant surgeon, OPO chief) make money and the poor person gets nothing for his organ. In this way we have saved the poor guy from exploitation.
I think (definitely not my idea, Alexander discusses it in his post) that a comfortably large tax break in exchange for a kidney donation hits the sweet spot.
You can't get out of acute money problems with a tax break. Arguably still more appealing to the lower middle class than the upper class, but it seems literally impossible to reward people for the sacrifice involved in an organ donation without the marginal utility problem arising.
Still, I think it eliminates all the truly unpalatable failure modes, like impulsively donating a kidney to pay off a gambling debt. If some people choose to make an organ donation so they'll have more of their income over a five year period to invest into their children's college fund, that isn't such a bad thing.
Financial transactions are rarely a matter of consent between equals. There is almost always a power imbalance, particularly when medical issues are involved.
The law, in its majestic equality, allows rich and poor alike to sell their internal organs to try to make their power bill payment next month.
That's without explicit coercion (sure, I'll do X for you, so long as you sell your kidney).
Focusing on equal relations is missing the point, which is that the corporation (a more powerful entity) is selling you things, not the other way around. “Punching down” isn’t acceptable, and all that.
What if I offer someone a million dollars to commit suicide and harvest all their organs? Will desperate people accept that offer? Is it ethical?
That is rhetorical, it is highly unethical. And similarly, desperate people will sell organs under financial pressure and limited or no regulation on the sales tactics or accurate disclosure.
A more effective plan would be to offer $100-$1000 cash payment at time of registration when getting a license to be an organ donor. It is hard to find matches. Better and more economically efficient to have a broader pool of potential donors, for all parties. And since the donors are already brain dead, no ethical dilemma.
Kidney sales are not exploitation of the poor in all circumstances. Let's say the market clearing price was 10kUSD. What if legislation made it 1mUSD? Is that still exploitation? It should be exploitation at any price if it's exploitation at all.
I personally believe it should be set at a price where the donor queue is something like 100x the need queue. Then it's way above market and the argument for "exploitation" is weakened further.
I agree with you that it shouldn't. What I was trying to do is suggest that for some people it might be a function of the money.
The suggestion I made was so that the person that gets chosen to donate would be delighted that he was chosen (ahead of 99 others), and when someone is delighted, how can one argue it's exploitation?
It is unlikely that a parent will be the only possible donor to a child. However if they were then they could donate it to their kid, and if there was a market for kidneys (price TBD) then the parent should in turn be able to find a replacement if their other kidney went wrong.
Clumsy phasing initially, sorry.
I meaning that they may feel compelled to take the money for some reason. It might not be the donor putting the pressure on, it might be someone else.
Penny Lane made a documentary (Confessions of a Good Samaritan) of her experience as a donor for a stranger. A recent episode of the Econtalk podcast talks to her and is more focused on the philosophical aspects of kidney donation to a stranger.
Incredibly noble. I have a disastrous, incurable disease (PSC - primary sclerosing cholangitis) that may someday need a liver transplant (I'm not asking right now), which has lead me to thinking often about organ transplants.
My sister needed a liver transplant last year after many years of decreasing liver function. Given her age and other factors, they told her to expect to wait three to five years for a deceased donor, and that she likely would not live long enough for that. Of her six siblings, three of us passed the initial screenings to be donors. As we were about to start the more invasive tests, a deceased donor became available and my sister was the only match within the distance they were willing to transport the liver. Five hours later she went into surgery. She was only on the recipient list for two days. Everything went as well as could be expected and, in many ways, she's doing better than she has in decades.
It's very complicated to think about the donor. All they told us was that it was an 18-year old who died in a traffic accident. We are all so grateful for the liver, and so sad for the donor's loved ones. Hopefully knowing that the donation saved another life and a part of their loved one lives on gives them some solace.
If you don't mind me asking, what were you and your siblings told regarding the risk level for the donor? I tried googling this and I didn't find anything particularly definitive as the sample sizes were reasonably small
They said the primary risk was the same infection risk present in any major surgery, but they didn't put numbers on that. It's a large incision, so they said to expect significant scaring. They take half of the donor's liver. They said it will be back to ~80% of its original size in ~6 weeks and full size in about a year. They said to expect a week in the hospital, with significant pain, and a month of recovery nearby - we would have been travelling to have it done near my sister, and they wanted to be able to treat us if there were complications. The hospital covered all medical costs for donors, outside of medical insurance.
It sounded like there was very little risk to liver function in the donor after recovery. They said that ongoing liver function should, in fact, be above average, as they wouldn't take a donor unless they had reason to believe it was a completely healthy liver to begin with.
In our case, multiple advocates were assigned to each of the potential donors. Those advocates had no contact with my sister, and didn't even know her name or our relationship to her. It was their job to ensure minimal risk to us and to try to make it 100% okay for us to back out of donating. If we backed out or were ruled out medically, or for any other reason, their communication to my sister's team would have been the same, "they are no longer a candidate." Of course, we would be free to communicate whatever we wanted.
Overall, they were very picky about selecting living donors. This was a large research hospital that is well known for liver transplants. They said they'd never had a liver donor death (as you said, not a huge sample size) and that it would be highly costly to the program, in terms or ability to attract donors, if they did have one. They said that the living donor should expect to go through a nutrition program run by their doctors to get to their ideal weight, with significant physical training involved. A therapist would also be assigned to the donor. Everything seemed geared to reducing risks to the donor.
As a long time lurker here I created an account just to reply to this. I'm in the same boat! Diagnosed five years ago.
It has taught me one thing about how hard finding causations is. While my liver is not fully healthy, ever since diagnosis it's been unchanged (according to scans) and my liver values have been good (for five years!). The reason? Chance, as far as I can tell. I am on the most conservative bog-standard treatment available (only UDCA), and it has been working really well.
Reading online there are a lot of people doing antibiotics etc. I'm not being negative about these attempts (I'm sure it has some efficiency, studies seem promising), my point is just that if I took _anything_, I would contribute my mild progression to it and praise it like a panacea. Causation seems almost impossible to find with n=1. To me pure chance seems to dictate a lot.
I am expecting a day when it all goes downhill though. With that said there does seems to be people who can go all their life without needing a transplant (the doctors seem more confident of this than the statistics, which is another strange oddity, but the statistics have always seemed overly harsh to me. I wonder if late diagnoses contribute to this).
I also have PSC. Pretty scary how little is known about how to treat it. The facebook group for it seems like a good resource. Ive been on oral vancomycin for about two years and it has normalized my enzymes, at least
You should try to convince the others on the Facebook groups to undergo full genome DNA sequencing (around $1K USD, usually not covered by insurance, I would pay for the other patients if I were you, their data is more than worth it given it’s your life on the line) and submit the data to patient networks and orphan drug groups. There are lots of bioinformatics methods now (thanks to mostly advances in ML among other things) that can derive insights into the problem, without any physical assays or laboratory tests.
DNA sequencing has been done, we know the HLA[1] is a part of the disease. I don't think any more DNA will help find a cure or even a way to help. PSC is a complex "black box" disease. A person can have the DNA but not have the disease.
BUT... bile and fecal samples still seem to be of high value for data collection. I've spoken with the doctors at PSC Partners to start advocating this collection, but they've noted that they don't have a way to process and store. Yet other clinicians have been doing this. I want to look into this more to help bring it all together (data is fun!), but haven't had to the time (single parent).
I have always had a great deal of empathy. In my younger years I would help people to my own detriment. It was something I had to work on, to put myself first. The idea was that in order to help someone else you had to be okay yourself. I have struggled with depression my whole life, and in those early years my natural inclination towards empathy let me to being taken advantage of more often than I truly helped someone. I learned some hard lessons. I always wondered what my empathy would have led me to had I not struggled with my own depression. It's when I read accounts such as this that I am able to understand. It gives me an invaluable insight into that very qustion, and so I always appreciate hearing the accounts of people not burdened by depression. It helps me understand, and in the end, feel less guilty and not so selfish. Thank you for sharing this because it means a lot to people like myself that want to help more than they are truly able to, and to feel less guilty about that fact.
I’m just about a week later in my kidney donation than the author.
My husband was diagnosed with chronic kidney disease in late
2022 and it rapidly progressed to end-stage renal failure at the end of 2023. He’s been on dialysis since February.
It took quite a bit of semi-political hurdles to get him on the UNOS transplant list; once that happened, several people had volunteered to go thru the process to be a donor on his behalf.
I was the only one cleared; it turns out I was a match, but a better one could be found, so I went ahead and donated to an anonymous recipient. A few days after my donation, a match was found for him, and he receives his new kidney in a few weeks. That will make all this worth it for me.
My pain was much less than the author’s; it never got 9over a 3. I used one Oxy pill, and the rest of the time, Tylenol controls it. Still sore around the main laparoscopic site (1-2) still uncomfortable and can’t sleep on my left side 2 weeks out.
Definitely feeling the fatigue I was told to expect as my body adjusts to one kidney. I was told to plan for 6 weeks out of work, and I think I’m going to need most of that to rebuild stamina. I’ve been trying to walk as much as I can, weather and fatigue permitting, and I’ve had helpers to deal with the weight restrictions I’m under.
The weight restriction is so annoying, especially as I've been trying to get into better shape/exercise more. I'm glad your donation went well & hope that your husband's surgery goes just as well.
I imagine taking 6 weeks off of work would be the hardest part of this for many people, unless they can get fully-paid medical leave. Presumably most people with decent middle-class jobs do get that.
My maternal grandmother lived with kidney disease and my mother and (maternal) aunt both had kidney disease too and have both had kidney transplants (ironically each from their partner).
A good friend had a kidney transplant too from her twin sister which means that she has negligible anti-rejection medications.
My mother's transplant was more than 10 years ago. She's had issues including, as a consequence of being immuno-supressed, cancer from Epstein-Barr virus (she recovered) but she's otherwise enjoying her 80s with her several grands and a great.
My father (her donor) continues to thrive and has had no obvious negative consequences to his life-saving gift.
They still bicker!!
My sister, cousins and I have our creatinine and potassium levels monitored.
I had an elevated potassium test recently and it's depressing to be reminded how fragile life is. In my case, a follow up test appears to indicate that the prior test was exceptional (and I think can be explained).
We have 2 kidneys but only one heart, liver etc. and so, while there's an evolutionary benefit, experience suggests that people do just fine with one kidney.
To every brave and selfless person who's donated an organ, you have my utmost respect and gratitude.
Fun fact: kidney transplant recipients generally have 3 kidneys: the OGs and the donated kidney
If more people shared perspectives like it was shared in this article, altruistic organ donation might feel less like an exception. Kudos to the author for not only doing this but also writing about it in a way that invites others to consider it for themselves.
Your act of donating a kidney is incredibly selfless and inspiring. Thank you for your courage and generosity in making such a significant impact on someone’s life. You're a true example of compassion and kindness. Wishing you a smooth recovery and continued good health!
Age: 18 or over.
"While some transplant centers may have a hard cutoff for kidney donor age, an increasing number are focusing more on health and evaluating older donors on a case-by-case basis."
It was pretty straightforward for me. I read this blog post [0], and one specific section stood out to me:
> 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.
I fell into the category of people who would say yes, so I took action. It's a bit scary, but the outcomes look very good for donors. It's a very low risk (extremely low chance of death or major complication) for a very high reward (very likely give someone else years of life without relying on dialysis).
