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.
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.
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.
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?
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.
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.“
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.
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.
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.
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!
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.
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.
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.
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?
I would be interested if you thought about this.
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.
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.“
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.
https://www.econtalk.org/give-away-a-kidney-are-you-crazy-wi...
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.
I'm also excited for genetic pig kidneys.
https://nyulangone.org/news/studies-reveal-cell-cell-changes...
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.
I hope your case goes so well. Good luck!
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.
You may be interested in this: https://x-therma.com/news/x-therma-achieves-worlds-first-sub...
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.
Penny Lane just made a documentary about donating one of her kidneys to a stranger. It’s called Confessions of a Good Samaritan: https://www.sandboxfilms.org/films/confessions-of-a-good-sam...
Thank you, good human. Maybe you could share more about your motivation?
THANK YOU.
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.
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!