Recovering from a kidney donation
sjer.red
sjer.red
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.
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.
No idea if it worked for or against her, but clearly she managed a long time despite them.
(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 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 my case my kidney went on a flight from Seattle to North Carolina overnight and wasn’t transplanted until morning.
If it were so important I would imagine they’d fly the recipient out to me (or vice versa) so that the surgery could be concurrent
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.
This stays in effect as long as the NKR exists -- there's no expiry.
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.
see the FAQ section for more information.
> 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.
A donor ends up with ~70% of their pre-donation capacity, not half.
https://pmc.ncbi.nlm.nih.gov/articles/PMC7737237/
Donating a kidney is a net positive in aggregate kidney function.
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.
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.
> 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.
Hoping that I have the same luck!
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.
I would be interested if you thought about this.
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.
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.
> 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
https://www.kidney.org/transplantation/what-to-expect-after-...
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.
https://stanfordhealthcare.org/medical-treatments/k/kidney-t...
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.
If you have more questions, there's lot of good info here: https://www.donor-shield.org/kidney-donors/
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.htmlThe 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).
We all buy things daily from entities with much more power than ourselves, for example.
Hypothetically, if someone wants to sell a kidney to pay the bills, and they are of sound mind, the government shouldn't stop them.
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.
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.
Your argument amounts to rejecting marginal improvement because it's still not good enough.
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.
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.
It would for some.
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.
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?
https://www.econtalk.org/give-away-a-kidney-are-you-crazy-wi...
I'm also excited for genetic pig kidneys.
https://nyulangone.org/news/studies-reveal-cell-cell-changes...
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.
I hope your case goes so well. Good luck!
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.
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'm a layman so I don't know if this is genuine, but if it is it seems to be a world changing thing for people in your situation.
https://www.npr.org/2024/07/08/nx-s1-5005407/transplant-surg...
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).
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.
https://www.donor-shield.org/donor-protections/lost-wage-rei...
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
> 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).