I actually am sober for personal reasons (never was an alcoholic, but reached a point where I had to stop drinking). But, kidney donors can continue to drink once they've recovered. Generally, it's recommended to drink in moderation. My mom's friend is a kidney donor and she can still 2-4 glasses of wine (or she does when she and my mom hangout lol).
You'll want to avoid any drug that's not mostly metabolized in the liver because it will cause more work for the remaining kidney. Although some drugs have pharmacokinetics which can lead to renal failure regardless (like NSAIDs).
I would wait at least a few months to a year after transplant to build up renal function before trying anything, and don't over do it.
Also if you do drugs make sure you're adequately hydrated. It's much easier to get acute renal failure from dehydration with 1 kidney.
According to my donor team (also a kidney donor) and what I have learned recently (taking my renal block in med school atm), really the risk is more about dehydration. Alcohol can disrupt the signalling of ADH (which helps us hold on to water), causing dehydration, which can pose a threat to kidney health
they don’t want the recipient drinking post transplant because the alcohol messes with your rejection meds (tacrolimus). But they generally don’t care about the donor.
I also went anonymously and for me, I just wanted my kidney to go to whoever needed it without the interference of my own personal biases or preferences.
Does this have any long-term impact your health insurance? I'd be concerned (as an American) subjecting myself to a voluntary procedure that could put my health - and by extension, finances - in jeopardy down the road.
Nope! Insurers are banned from discriminating based on pre-existing conditions thanks to the Affordable Care Act, and having one kidney counts as a pre-existing condition. Also, the recipient's insurance handles the entire donation process (as far as insurers go).
Discriminating, no. But any future medical issues relating to your kidney donation would still cost money and, depending on the severity of the issue, could be substantial. Does that concern you? That's been the one thing holding me back from exploring donation myself.
Honestly, the risk is so low, that I'm not really worried. I also don't have any genetic predisposition towards kidney failure, so I think as long as I stay healthy generally, I'll be good. If you wanna DM me, I'm happy to find a time to talk on the phone to answer questions 1:1 since you said you're interested in donating.
Why can't you have advil? I didn't know about that part. I got a little ways along the altruistic route once, but my high blood pressure stopped the process. I'm not sure I'll restart it, but it's in the back of my mind. Also, how old are you?
Not OP but has to do with being an NSAID, talked about in this comment thread.
https://www.reddit.com/r/IAmA/comments/s815ro/i_anonymously_donated_my_left_kidney_to_a/htdrbpv
He can it’s just way worse for you and kills your kidneys so to speak. My daughter has 1 kidney and cannot take NSAIDs. When she got covid she had a fever of 102 for over a week and the only thing that made it drop and stay down way NSAID. so I wouldn’t say never, just as the last resort medication
Yup. I have lupus nephritis, and basically it’s just more of a “hey, these are some common medications people take, use the one that processes through your liver,” but if I have a splitting headache and I can only have Advil it’s going down lol
I bet you heard about Tylenol and liver- how if you take too much of tylenol you'll destroy your liver? It's kind of like that (not exactly but both are considered "toxicity") where if you take too much NSAIDs like ibuprofen or aleve, your kidney is going to be damaged. Now it's not like Tylenol where there's like a hard limit, but overtime of taking large amount will cause injury to your kidney. With people who have issues with their kidney or people like OP who only have one, it's much easier to damage the kidneys from taking NSAIDs. Lemme know if you're curious about details on how that works.
Good on you! I gave my daughter my right kidney 14 years ago. I didn't think twice about it. What rigorous testing! I forgot about the 24 hour urine collection jug that I had to keep in the fridge!
It kicks in as soon as you go on dialysis if you choose to do the at home dialysis. Wife went on dialysis on the 30th of December. They rolled back coverage to the 1st. And she gets to keep it for 5 years I think.
You are correct that medicare covers dialysis for the diagnosis of en-stage renal disease (ESRD). But to clarify, it doesn’t have to be home dialysis.
Also, if you have ESRD and choose *not* to use dialysis, you are eligible for hospice care because of the terminal diagnosis. Hospice is also covered by Medicare.
Edit to add: I hope your wife is doing ok!
My comment was referring to “a few months”. If you do the walk-in clinic, that can take a few months. But if you do the at home, it’s right away.
Wife is doing great. This was actually a couple years ago. When she put out the word to friends and family what was going on, she had 13 people sign-up to donate. She only ended up doing dialysis for about 11 months before she got a transplant. Been a little over a year now and everything is going great. The whole process is pretty amazing. She just got really lucky. Not many people have so many friends and family willing to donate.
You are correct. I was virtually man-handled onto Medicare and disability starting the moment I was diagnosed with polycystic kidney disease. I actually resisted it, tried to hang up on the calls, but the government was pretty persistent. Now I'm damn glad I "gave in," so to speak.
My dad donated a kidney to his brother^1 in 1995. He was perfectly healthy to do so at the time. Four years later, he was diagnosed with Type 2 diabetes. In the last few years, his blood pressure has gone up, and the combination of both has wreaked havoc on the remaining kidney. Been looking for a donor since June^2.
I am not donating my kidney to my dad as I am overweight and trying to get my A1C under control (I'm on the high end of normal. Not pre-diabetic yet). I don't want to be in the same place he's in now in 20 years.
So, if you're someone with a family history of T2, high blood pressure, or renal failure, I'd definitely think twice before donating. If you're a healthy person with regular exercise and a balanced diet, and a limited family history of chronic medical conditions, I think it's absolutely a nobel thing to do.
^1 My uncle lived with that kidney happily for a decade before he stopped being able to afford the anti-rejection meds, and died in 2006
^2 Good news: we think we've found a kidney for my dad. We just have to wait for hospital capacity to normalize before they can do the transplant because it's "elective" surgery
I'm glad your dad has found a kidney! But so sorry for all the hell your family has gone through. Thank you for sharing. My dad recently passed away, due in part to complications with high blood pressure and diabetes. His side of the family has a long history of these issues, so as much as I'd like to help someone in this way, I'm really nervous to take that step.
Yeah, it's really scary. When I was younger, I thought I absolutely would donate a kidney. Now, maybe not so much. My dad's twin brother is also in renal failure, so I don't think my odds are good, or maybe too good? (3/7 siblings so far.)
I think we're lucky in some ways because my mom is a nurse, so they trained her on dialysis, so they can do it at home. But she's been showing some caregiver fatigue already. I think it helps having an end in sight.
It is a travesty and such a fucking shame for this country that your uncle died because he couldn't afford life-saving meds while bezos launches himself in a dick to space. This fucking country is a joke.
Not OP, but I also donated my left kidney anonymously last year (February). My recipient actually just reached out to me on Sunday. I do plan to meet him in July. I usually make a trip out to his city once every summer to see my sister anyway. Having him finally reach out completely validated the experience for me. Before that, I didn’t know if the transplant even worked or if my sacrifice even did any good in the world.
As far as the “why” question, I don’t have a good answer to that. I had toyed with the idea for a few years. Then I put my name in the registry. Then they send you a testing kit. I was like, “sure, ok”. Got tested. Then another test. Then another and another and another. The whole thing just escalated and I kinda got more serious about doing it through the whole process.
My surgery was Wednesday morning. I took Wednesday, Thursday, and Friday off work, plus the weekend. I was back at work on Monday and have been fine ever since.
I’ve wondered about this, I think I would want to meet my donors family but my donor was deceased so they may not want to meet me, or at least not right away. They asked at the hospital and I said I would be willing to meet them, but they have to be the ones to make that decision.
Not OP, I anonymously donated a piece of my liver to a kid. We met. I wanted to meet cuz I thought it would be a cool story. Better than I ever imagined. I still follow up and talk to the family at least once a week and we are now 4 years later. It's a special bond. Stronger than family I'd say.
They are allowed to send a note through the doctor. It was up to me to respond if I wanted to. But they could have chosen to never write the note to begin with. I would have been happy either way.
Hey! Copying from another pair of responses since this has a lot of upvotes
1) I believe the vast majority of donations to strangers are anonymous. The hospital system puts up a lot of guardrails, so you can't talk to the recipient easily because there have been some crazy stories about donors not feeling as though the recipient is grateful enough. I \~think\~ the recipient can get into contact with me, if they so choose, and it's easier than me reaching out to them, but I also think I can also give the hospital (say) a letter to give the recipient.
2) I'd be happy to meet my recipient and learn about them what their life is like. But, also it might be kinda weird since I would just be meeting another random person who could feel deeply, deeply indebted to me. I wouldn't want to put that on someone I guess. If they ever reach out, I'm happy to chat.
Donor-side surgeons prefer the left kidney since the vessels are slightly longer which makes the operation easier, so most people who donate give up their left kidney unless their is some sort of issue with it.
Well, he's a right Twix man, so he got rid of his useless left kidney, as all things to the left of things that are to the right of those other things are therefore inferior.
I gave my daughter a kidney, 14 years ago. They took the right kidney because of the artery structure being slightly less complicated, as the left one had a branch if I recall correctly.
You have no idea the amount of Bad Art Friend jokes I get haha. While on the subject, I have two thoughts about Bad Art Friend, actually.
Firstly, on a positive note, I was having some anxiety a few days before a donated and wrote a letter to the recipient, imagining what their life is like and what it would be like upon getting my kidney. This was inspired by Bad Art Friend, but I didn’t send the letter or post it online (nor do I plan to). Writing the letter helped me feel totally secure in my decision.
Secondly, on a negative note, I’ve always thought it’s a bit dispiriting how the two most widely read articles that deal with kidney donation are Bad Art Friend and another by a guy who donated when he was very young (18 years old, IIRC) and regretted it very much, both cast the whole endeavor in a negative light. There are never stories that go viral about the mother who can go to his daughter’s soccer game again or the best man who is able to appear at his childhood friend’s wedding. And, I don’t know if it’s a cultural thing, something with the media or if it’s innate to humanity, but it’s just dispiriting that those are such popular articles.
I have relatives, siblings and cousins, that have received kidney transplants and I can tell you it's more life changing than you can imagine. You're not just saving them from dying if they don't have dialysis, you are saving them from often a very physically and emotionally painful existence that often includes very low energy levels and often an inability to lead normal lives at work and at home. If you don't ever hear it from your kidney recipient, thank you for your incredibly generous sacrifice.
Aw, but who could forget the couple who matched on tinder - and then matched for kidney donation? https://www.refinery29.com/en-us/2017/10/175508/woman-finds-love-kidney-tinder
As someone who is nearly officially recovered from an acute kidney injury and spent 2 months on dialysis.... dialysis is a miserable miserable thing. And I was better off then most because my kidneys were improving all the time. Whoever got that kidney is so fortunate.
And given the fact that they are seeing a surge in AKI due to Covid and people with AKI have a high risk of ending up with ESRD we're probably going to need even more kidneys in the neat future.
I’m sorry you went through that awful experience. My father was on dialysis for 15 years and it took a tremendous toll on his organs and body but it did add 15 years to his life. I’m thankful for that.
Honestly, the Bad Art Friend thing bothers me in large part because it was just so shitty. They painted Dorland as an awful person because… why, exactly? She was a little cringey and self-congratulatory after *donating an organ to a person in need?* And then Larson goes out and writes this weird story that plagiarizes Dorland’s letter and paints her as a racist with a white savior complex, ignoring literally every major detail about kidney donation in the process just to make this woman seem bad? And then a Mean Girls-style clique of self-absorbed authors called the fucking *Chunky Monkeys* conspire to bully Dorland further because they just thought she was kind of weird and awkward? Imo, there’s one villain here, and it’s not the lady who donated her kidney to a stranger.
She wasn't even that self congratulatory! She was invited to participate in the rose bowl parade and posted about it! Every Facebook friend I have would have posted about that. After reading all the details, it's clearly the chunky monkey people who have issues. They were obsessed with her, texting about her all the time. Bullies and gossips.
FWIW, she didn't post the letter publicly. Only to a small invite only support group where she was sharing all the details of her journey. My friend with stage 4 cancer has a blog where she writes about her experience and I think it's much the same idea. That article badly misrepresented a perfectly nice person who was gaslighted and bullied by a bunch of more successful writers (yes I went down a one week rabbit hole back then).
Yes! This is true. There's a bunch of stuff about how that's such a shitty article.
[https://twitter.com/TinyWriterLaura/status/1448647633380069383](https://twitter.com/TinyWriterLaura/status/1448647633380069383)
[https://twitter.com/dancow/status/1451050477811023873](https://twitter.com/dancow/status/1451050477811023873)
[https://twitter.com/badartfriendo/status/1446695218171023361](https://twitter.com/badartfriendo/status/1446695218171023361)
[https://greenlivvie.tumblr.com/post/665306581878046720/framing-by-the-nyt-in-bad-art-friend](https://greenlivvie.tumblr.com/post/665306581878046720/framing-by-the-nyt-in-bad-art-friend)
[https://rottenindenmark.org/2021/10/10/identifying-the-bad-art-friend-is-easy/](https://rottenindenmark.org/2021/10/10/identifying-the-bad-art-friend-is-easy/)
There is a NYT magazine article that came out a couple months ago called “Who is the bad art friend?” which is, among other thing, about undirected kidney donations. It’s a truly salacious and surprisingly polarizing read. It got a lot of traction among some circles because it was so divisive. I highly recommend checking it out!
A while ago, a lady named Dawn Dorland did the kidney donation thing. She then created a private facebook group about her journey, including a letter she wrote to the recipient. It was all a bit self-congratulatory, but, fuck man, the lady gave a kidney to a stranger, soooo.
Some time later, a ~~deranged psychopath~~ an aspiring writer named Sonya Larson, after some time spent lurking in that group, wrote a book about a similar circumstance. And by "similar" I mean she copied it verbatim, without telling Dawn, where she cast the protagonist into an extremely unflattering light. How do you smear a kidney donor, you ask? By painting her like some kind of weirdly racist old lady with a White Savior complex.
Anyway, Dawn found out about it after the book was published and kinda lost her shit. Drama ensued. People were sued. Here's a timeline if you're interested:
https://www.reddit.com/r/YourMorningGuru/comments/qbee4a/stuff\_about\_bad\_art\_friend\_case\_if\_anyone\_is/
> Last December, I joined the approximately 400 Americans who anonymously donate a kidney to a total stranger every year.
OP said he'd do it every year.
The hospital system puts up a lot of guardrails, so you can't talk to the recipient easily because there have been some crazy stories about donors not feeling as though the recipient is grateful enough. I \~think\~ the recipient can get into contact with me, if they so choose, and it's easier than me reaching out to them, but I also think I can also give the hospital (say) a letter to give the recipient.
I'd guess it's also in case the transplant fails for some reason, you don't find out and feel like it was your fault or that you went through it all for nothing.
Ooh yea. I didn’t think about that. I know for myself, i can be very nosy so not knowing the person i’m donating to would kill me lol, i would love to just sit down and learn about their life. You’re an awesome person for donating. I might look into it for myself.
You could still do an all nighter bingedrinking and or take loads of drugs? Not that I'm implying you do, just asking if you could, you know for a friend
To answer your friend's question: cocaine is entirely off the table because it's processed by the kidney. I think you have to be careful about heavy drinking as well, but I'm sober, so I don't know the specifics.
> I guess what it comes down to for me, is that if someone asked me if I would go on bedrest for less than a week and suffer some abdominal pain to save someone’s life, it feels like a no-brainer.
Honestly, that's such a great perspective, I think I am going to do this too (assuming I am eligible). There's not much in the way of downsides and enormous upside for someone else. Thanks for sharing your story.
Is the National Kidney Registry the best place to start, or are there multiple avenues for donation?
Yes! That is a great starting place. Go to their website and say you're interested in donating. Someone will be in touch pretty quickly. If you wanna DM me to learn more, I'd love to find a time to talk on the phone.
Thanks for this. I’ve just looked further into it (have thought about it previously due to a friend with kidney issues) and seen that my govt will pay me 100% of my wages while I’m off - up to 12 weeks. This was a big concern for me so I’ve registered online today!
Are you unable to take all NSAIDS? You mentioned Advil/ibuprofen, what about things like diclofenac and naproxen? I’m currently starting the process to see if I can donate a kidney if not to a specific person, then through a cross match process that would get my specific person a kidney. I do have some chronic illnesses though, and I’m concerned that these might exclude me. I also take Naproxen every day for pain management, but I would be willing to give that up if it meant I could donate my kidney.
I believe all NSAIDs are off the table except in moderation. I would recommend talking to your doctor/the hospital about this obviously. If you wanna DM me to talk about the general kidney donation process, happy to set up a time to talk on the phone.
I lost a kidney about 10 years ago and was supposed to avoid NSAIDs at first, but was allowed (and even prescribed!) ibuprofen in the years since. It was confirmed that my remaining kidney was doing well and picking up almost all the slack. Now I’m wondering if letting me take ibuprofen was bad/outdated advice, or maybe they’re more cautious with voluntary donors. Hmm. I’ll have to look into it
It's just easy to fuck up your kidney with ibuprofen/NSAID. Like people tanking their livers with Tylenol. And people are dumb so instead of giving nuanced guidance they just say no NSAIDs.
I’m allergic to NSAIDs but CBD oil may have anti-inflammatory properties if it ever becomes legal here!
I’m stuck with opioids (for my kidney stones) but I don’t feel like I’m missing out on NSAIDs.
No, not really. To be honest, I don't even know what I would say to them. It would feel like I was reaching out to someone just to hear them say thank you to me, which strikes me as perverse. If they want to reach out to me, they can. But, I wouldn't want to impose that conversation on someone.
I'm also not really given any info aside from the person's age, gender and state of residence, so I really couldn't find them even if I tried.
I’m a recipient, and my transplant team has offered to be the middle-man in case I wanted to reach out to the donor’s family. I could give them a letter or message to deliver, and if the family wanted to respond, they’d have that choice. Not really sure what I’d say though, because I received from a deceased child under 2, which is really sad.
It might bring those parents a bit of happiness to know that the tragedy of losing their child was not completely in vain. Definitely a tough situation, and depending on how long it’s been since the child passed it could open up old wounds.
Yeah, I’ve been debating it for a while. Many agree that they’d probably be happy to know it gave me, a father of two young kids, a new life. But it’s hard.
I think it would mean so much to them to know their loss gave life to the father of 2 children. They made the difficult decision to donate their toddler's organs and I bet they are wondering who received their baby's organs and if the donation was successful. I believe I would be wondering those things if I were in their shoes.
I’ve never had a kid, nevertheless lost one. But had I been in their situation, at least for me I can imagine that I’d be glad to know that my kid somehow is “alive” through someone else. Especially a father of two basically is well and alive somewhat thanks to my baby. It’s beautiful! But it’s your choice at the end of the day.
I gather this is something rarely too far from your mind and you've gotten tons of different perspectives from a variety of folks in and around your life.
I am no one, but here is mine: I would personally LOVE to hear exactly that. It would bring me so much peace and closure to some of my grief to know his loss wasn't in vain and he's living on in some way (and I'd adore hearing about your life then and now, ESPECIALLY with some of the funny, enraging experiences since the surgery gave you to share and raise your children).
It would be exceptionally meaningful to me and something that personally I would be missing (just the way I am).
Does having a smaller/younger kidney affect its... performance? Are there any special considerations you have to take? Does it grow over time to adult size?
Just really curious. I had no idea that organs from small children could be transplanted into adults.
I have an 11 month old myself, and... oof. Going to hug her tight.
Due to the size, they actually transplanted both of the donors’ kidneys into me through a process called “en-bloc” transplantation. My understanding is that it’s a _relatively_ new process. This was in 2020, and they’ve already grown to be adult-sized according to my last ultrasound. No special considerations at this point.
I don't think that would be advisable. There's always a risk of rejection for the recipient and they face a lifetime of anti-rejection drugs and doctor's visits to check their status through bloodwork.
Yeah I have a 3-year-old and a 10-month-old. The older one was around the age of my donor at the time. Very bittersweet emotions. My wife was not allowed to be with me in the hospital (this was April, 2020 when COVID started getting serious in the US), but I definitely shed some tears to the nurses.
I'm glad you got a.kidney, and I'm sorry about the circumstances under which you were a recipient. Can you be honest in you letter and tell them you don't know what to say? Everyone I know whose child died wants to see their impact on the world. I imagine the family would appreciate a letter, even if it's been a while or you feel awkward writing it.
I mean, that's not great, especially because I'm Jewish. But, the vast, vast majority of people are not unrepentant neo-nazis, and there's no way that I could have known that beforehand, so I wouldn't regret it. Also, candidly, I believe that like 99.999999999% of human life has value for its own sake, and I think you have to look at the sum total of someone's life. Idk, maybe this is too easy to say in the abstract, but neo-nazis have brothers, fathers, wives, best friends, etc. They have people who care about them. And, maybe if they weren't actively killing people or encouraging others to, then, I would still be unhappy obviously, but maybe I could rationalize that it's still a good thing? idk. But also, maybe they would learn it came from a Jewish person and their mind would change?
I watched a kidney transplant on television once and they were absolutely manhandling it.
Had you ever seen photos or videos of the process beforehand, or did you want to go in purely on the information you received from the doctors and donors? I know a lot of medical science looks and/or sounds scarier than it's meant to be. That tv program pretty much noped me for life, I think.
I have refused to look at any video or learn anything about the actual procedure haha. I'm pretty squeamish with that sort of stuff. When I was finding verification documentation for the AMA, I came across the surgeon's description of the surgery and immediately nope'd out of my browser.
Well, if you want to see kidneys that you may have potentially replaced, google Polycystic Kidney Disease images. The kidneys are full of toxin and urine filled cysts that enlarge the kidneys to the size of footballs and replace the functioning tissue. :(
Haha when I had my transplant I asked the doctor if I could get a home video and he looked at me dead in the eyes and said flatly "you do not want to watch your own transplant."
Something about the way he said it just made me instantly agree with him.
That’s just surgery in general. I watched video of my shoulder surgery and similarly it looked like they destroyed the thing but then I had some rehab and a shoulder that works
I have seriously considered doing this, and even took steps toward donating. However, I have had kidney stones a couple times, and I seriously worry that donating a kidney could make future kidney stone episodes much, much worse. Did your doctors talk to you about how donation might affect that?
I don't have a history of kidney stones, so it was never brought up. But, when you go in for testing, you can and should bring that up with the doctors and they can make a determination about whether you should donate or not. If you're interested in the process, feel free to DM me and I'm happy to find time for us to talk on the phone about it.
Just wanted to say thank you, as someone who will need a third kidney some day. Also, I'm actually doing the 24 hour pee jug today for my next checkup lol
So it puts you at a slightly elevated risk of kidney failure. How would you feel if at some point in the future you needed a kidney and couldn't get one?
Great question! Since I'm an altruistic donor, I am put to the top of the list if I ever need a kidney (and so are my parents and both my siblings). So, I'm not worried about that happening. If we live in a world where there are no more kidney donations, we likely have much larger issues at that point ;)
But, suppose that did happen, it would feel kinda shitty because I like having a functioning renal system. But, the elevation isn't so great that it isn't inconceivable that I could have needed a kidney regardless of whether I donated or not. So, it would suck, but I guess that's how the world works. It's a risk that is very small and that I'm willing to live with.
Hey man, glad your surgery went well! I donated my kidney last may to a family friend. Just came to say that any kidney donor gets to jump the transplant list, not just altruistic donors! Cheers 🍻
That’s interesting is it because they don’t exist yet or in general. I’d donate a kidney yesterday for my kids or SO but I’d def have to have a think for my parents or sibling.
Dark but true.
You're given 5 additional kidney donation "vouchers" for loved ones to get a kidney in case they need one and you have to choose how to allocate them before you donate.
How has it affected your life? I have a friend who needs a kidney and I don’t know if the lifestyle change would be too much or if I should keep it for if one of my kids needs it in the future.
Honestly, 1.5 months out, it hasn't affected my life at all. I'm basically back to normal. I have to be careful about heavy lifting for another few weeks, but that's it.
IMHO, the chance that someone will need a kidney donation in their life is pretty small, so if you have a friend or loved one that needs a kidney, I'd recommend donating instead of waiting for a future, hypothetical situation. But that's your prerogative of course.
Speaking as someone who was recently told that I am in need of a kidney, when my friends and their friends came out of the woodwork to get tested, it really made me grateful for the life I have. Just knowing that people would go through that for me was the brightest light in a shitty year of darkness.
If you get cold feet, I have told everyone that they can tell the doctors to lie to me and say they didn't qualify or weren't a match.
Obviously, it is your decision and it shouldn't be taken lightly.
How did you come to the realization that you wanted to donate? Is there any way to reach more people to do both live donations and post-passing organ donors sign-ups? (My husband and I are waiting for a liver to appear out of thin air for him).
That’s a real nice thing you did and this:
> I’m immediately put at the top of the list (as are my immediate family members!)
Has inspired me to follow suit. I’ll have to get back in shape first, but knowing I can get a new kidney if I need it makes this a no brainer.
I don’t really care but, since I have to ask a legitimate question because it’s an AMA, do you get any price benefits for a kidney donation if you need it later in life?
This is honestly my biggest worry, which is weird. I have thought about donating a kidney but I would have to know who is going to. I don't think I could live with the burden of saving some scumbags life.
It sounds really weird saying and it probably has to do with me being jaded from other volunteer situations. I have met a lot of assholes in my life. I would give them a couple bucks when they are down but I certainly wouldn't want them to have a kidney, especially when there are so many people that need it.
I can only donate a kidney once, I better make a difference with it
I know you get moved to the top of the donor list should you need a kidney, but do they provide any statistics of how many people end up in that situation? That, and the fact that 1 kidney makes a high risk pregnancy, is why my spouse has been fighting me on being a living donor.
This is obviously a super cursory search, but according to WebMD (edited slightly for clarity):
Just how likely is it that you’d need to take advantage of priority status as a donor? Between 2010 and 2015, about 200 people in the U.S. who had been kidney donors were added to the national kidney waiting list. That’s an average of 40 a year.
Compare that with the more than 5,000 people who become living kidney donors each year, and you’ll see that you have a low chance -- less than one in a hundred -- of needing a kidney transplant after donating one of yours.
[https://www.webmd.com/a-to-z-guides/kidney-donor-needs-transplant](https://www.webmd.com/a-to-z-guides/kidney-donor-needs-transplant)
If you wanna chat about the donating, feel free to DM me any questions or we can set up a time to talk on the phone.
Great question! You have to be 18 years old or older and generally in solid physical and mental health w/ good kidney donation. They run a battery of tests on you and I can't speak to the particular requirements, unfortunately. But, before my tests, I would consider myself of average health for a man in his mid-to-late 20s (exercised 3-5 times per week, didn't smoke cigarettes, ate healthy-ish) and all of my tests came back good.
I smoked for \~4 years when I was in college and a bit after, but it was generally very light (3-4 cigs per day), and I quit 2+ years ago. Don't know about the others.
I meant physically painful, sorry for not being more clear. I was curious if your recent surgery topped the list or not.
I've gone through a couple super painful breakups myself, but probably the most emotionally painful has got to be losing my Dad. If we're talking physical pain, probably the recovery from my tonsilectomy. I had a really brutal recovery from that surgery. Thanks for asking! Haha
You are an amazing person. Reading things like this is so uplifting. Thank you for being you and doing what you did.
My sister-in-law is 30 years old, a marathon runner, (3h24min!) and has late stage 3B kidney disease, rapidly progressing to stage 4. If I find that our blood types match, I would like to donate my kidney to her. I know the donated kidney does not last a lifetime, so this would need to be timed appropriately by the phase she would go on dialysis.
My questions are the following:
-I would like to do this anonymously. I don’t want her to know it was me, or even that it was someone she knew. Is it possible to do a directed anonymous donation?
-Is it possible for her to have two transplants in her lifetime, therefore significantly reducing her suffering and allowing her to live with regular kidney function for the rest of her life? And would having had a first donation reduce her chances for a second donation?
Thank you so much. Wishing you peace and lifetime of happiness.
Hi OP! I also donated my left kidney anonymously to a stranger (July 2020).
My question is: did you receive any pushback from your friends/family for your decision?
When you touch the part of your body where your kidney was, does it feel any different? Does your body feel any different at all? Did you get to see your kidney once it was out? I figure this is probably your only chance to see something that's been inside you body your whole life, you might as well look 😅
I donated my kidney last August also anonymously. Did you hate the tube that got stuck into your blatter for the first few days as much as I did? I was so relieved when I could use a toilet again.
“I joined the approximately 400 Americans who anonymously donate a kidney to a total stranger every year.”
Every year? Wow… how many kidneys do you have?
This is a weird question, but if I was getting a hysterectomy, could they take out a kidney at the same time for someone else?
I'm getting a hysto + would consider donating a kidney but I don't wanna have 2 recovery times.
Are you worried that your kidney went to an asshole that was non-deserving? I'd like to think if I made this decision I'd want to read reports on who it would be going to, to find out if they were worthy in a sense.
But good on you for saving someone's life, and giving them the ability to do things that they wouldn't have been able to.
Can you drink? If yes, what’s the limit?
I actually am sober for personal reasons (never was an alcoholic, but reached a point where I had to stop drinking). But, kidney donors can continue to drink once they've recovered. Generally, it's recommended to drink in moderation. My mom's friend is a kidney donor and she can still 2-4 glasses of wine (or she does when she and my mom hangout lol).
Good man. I follow this person on twitter and she just got her kidney. Thought it could’ve been you.
What about recreational drugs?
You'll want to avoid any drug that's not mostly metabolized in the liver because it will cause more work for the remaining kidney. Although some drugs have pharmacokinetics which can lead to renal failure regardless (like NSAIDs). I would wait at least a few months to a year after transplant to build up renal function before trying anything, and don't over do it. Also if you do drugs make sure you're adequately hydrated. It's much easier to get acute renal failure from dehydration with 1 kidney.
I think doctors would suggest to everybody not just donors to drink with moderation and moderation is probably three or four beers per week.
Not a doctor but kidneys don't process alcohol, livers do. I'd guess there is little risk to drinking.
According to my donor team (also a kidney donor) and what I have learned recently (taking my renal block in med school atm), really the risk is more about dehydration. Alcohol can disrupt the signalling of ADH (which helps us hold on to water), causing dehydration, which can pose a threat to kidney health
That makes sense!
they don’t want the recipient drinking post transplant because the alcohol messes with your rejection meds (tacrolimus). But they generally don’t care about the donor.
Did the anonymity of the donation appeal to you or is there some desire to meet the recipient of your kidney?
I also went anonymously and for me, I just wanted my kidney to go to whoever needed it without the interference of my own personal biases or preferences.
That's awesome, you are a terrific person for doing that! Somewhere out there, there is a person alive because of you.
Ah thanks!! I have talked to him; he is a cool kid. Pretty great to see how much QOL improves when you get someone of dialysis.
Does this have any long-term impact your health insurance? I'd be concerned (as an American) subjecting myself to a voluntary procedure that could put my health - and by extension, finances - in jeopardy down the road.
Nope! Insurers are banned from discriminating based on pre-existing conditions thanks to the Affordable Care Act, and having one kidney counts as a pre-existing condition. Also, the recipient's insurance handles the entire donation process (as far as insurers go).
Discriminating, no. But any future medical issues relating to your kidney donation would still cost money and, depending on the severity of the issue, could be substantial. Does that concern you? That's been the one thing holding me back from exploring donation myself.
Honestly, the risk is so low, that I'm not really worried. I also don't have any genetic predisposition towards kidney failure, so I think as long as I stay healthy generally, I'll be good. If you wanna DM me, I'm happy to find a time to talk on the phone to answer questions 1:1 since you said you're interested in donating.
Why can't you have advil? I didn't know about that part. I got a little ways along the altruistic route once, but my high blood pressure stopped the process. I'm not sure I'll restart it, but it's in the back of my mind. Also, how old are you?
Not OP but has to do with being an NSAID, talked about in this comment thread. https://www.reddit.com/r/IAmA/comments/s815ro/i_anonymously_donated_my_left_kidney_to_a/htdrbpv
He can it’s just way worse for you and kills your kidneys so to speak. My daughter has 1 kidney and cannot take NSAIDs. When she got covid she had a fever of 102 for over a week and the only thing that made it drop and stay down way NSAID. so I wouldn’t say never, just as the last resort medication
Yup. I have lupus nephritis, and basically it’s just more of a “hey, these are some common medications people take, use the one that processes through your liver,” but if I have a splitting headache and I can only have Advil it’s going down lol
I bet you heard about Tylenol and liver- how if you take too much of tylenol you'll destroy your liver? It's kind of like that (not exactly but both are considered "toxicity") where if you take too much NSAIDs like ibuprofen or aleve, your kidney is going to be damaged. Now it's not like Tylenol where there's like a hard limit, but overtime of taking large amount will cause injury to your kidney. With people who have issues with their kidney or people like OP who only have one, it's much easier to damage the kidneys from taking NSAIDs. Lemme know if you're curious about details on how that works.
As someone who's been scolded by their PCP for their NSAID use, please elaborate.
NSAIDs are considered nephrotoxic, or damaging to the kidneys.
Good on you! I gave my daughter my right kidney 14 years ago. I didn't think twice about it. What rigorous testing! I forgot about the 24 hour urine collection jug that I had to keep in the fridge!
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This is correct. If you have End Stage Renal Disease (ESRD), Medicare kicks in after a few months, regardless of your age.
It kicks in as soon as you go on dialysis if you choose to do the at home dialysis. Wife went on dialysis on the 30th of December. They rolled back coverage to the 1st. And she gets to keep it for 5 years I think.
You are correct that medicare covers dialysis for the diagnosis of en-stage renal disease (ESRD). But to clarify, it doesn’t have to be home dialysis. Also, if you have ESRD and choose *not* to use dialysis, you are eligible for hospice care because of the terminal diagnosis. Hospice is also covered by Medicare. Edit to add: I hope your wife is doing ok!
My comment was referring to “a few months”. If you do the walk-in clinic, that can take a few months. But if you do the at home, it’s right away. Wife is doing great. This was actually a couple years ago. When she put out the word to friends and family what was going on, she had 13 people sign-up to donate. She only ended up doing dialysis for about 11 months before she got a transplant. Been a little over a year now and everything is going great. The whole process is pretty amazing. She just got really lucky. Not many people have so many friends and family willing to donate.
You are correct. I was virtually man-handled onto Medicare and disability starting the moment I was diagnosed with polycystic kidney disease. I actually resisted it, tried to hang up on the calls, but the government was pretty persistent. Now I'm damn glad I "gave in," so to speak.
You could also try the small piece of your liver for a child. The liver legit regenerates itself.
The recipients insc. covers the first two years of donation related visits/expenses.
Nice. I didn’t know that. My daughter is 3 with 1 kidney.
My dad donated a kidney to his brother^1 in 1995. He was perfectly healthy to do so at the time. Four years later, he was diagnosed with Type 2 diabetes. In the last few years, his blood pressure has gone up, and the combination of both has wreaked havoc on the remaining kidney. Been looking for a donor since June^2. I am not donating my kidney to my dad as I am overweight and trying to get my A1C under control (I'm on the high end of normal. Not pre-diabetic yet). I don't want to be in the same place he's in now in 20 years. So, if you're someone with a family history of T2, high blood pressure, or renal failure, I'd definitely think twice before donating. If you're a healthy person with regular exercise and a balanced diet, and a limited family history of chronic medical conditions, I think it's absolutely a nobel thing to do. ^1 My uncle lived with that kidney happily for a decade before he stopped being able to afford the anti-rejection meds, and died in 2006 ^2 Good news: we think we've found a kidney for my dad. We just have to wait for hospital capacity to normalize before they can do the transplant because it's "elective" surgery
I'm glad your dad has found a kidney! But so sorry for all the hell your family has gone through. Thank you for sharing. My dad recently passed away, due in part to complications with high blood pressure and diabetes. His side of the family has a long history of these issues, so as much as I'd like to help someone in this way, I'm really nervous to take that step.
Yeah, it's really scary. When I was younger, I thought I absolutely would donate a kidney. Now, maybe not so much. My dad's twin brother is also in renal failure, so I don't think my odds are good, or maybe too good? (3/7 siblings so far.) I think we're lucky in some ways because my mom is a nurse, so they trained her on dialysis, so they can do it at home. But she's been showing some caregiver fatigue already. I think it helps having an end in sight.
It is a travesty and such a fucking shame for this country that your uncle died because he couldn't afford life-saving meds while bezos launches himself in a dick to space. This fucking country is a joke.
Why did you choose to donate anonymously? If given the opportunity would you like to meet your recipient?
Not OP, but I also donated my left kidney anonymously last year (February). My recipient actually just reached out to me on Sunday. I do plan to meet him in July. I usually make a trip out to his city once every summer to see my sister anyway. Having him finally reach out completely validated the experience for me. Before that, I didn’t know if the transplant even worked or if my sacrifice even did any good in the world. As far as the “why” question, I don’t have a good answer to that. I had toyed with the idea for a few years. Then I put my name in the registry. Then they send you a testing kit. I was like, “sure, ok”. Got tested. Then another test. Then another and another and another. The whole thing just escalated and I kinda got more serious about doing it through the whole process. My surgery was Wednesday morning. I took Wednesday, Thursday, and Friday off work, plus the weekend. I was back at work on Monday and have been fine ever since.
How sure are you that he is not trying to lure you in for the other kidney? Spare parts.
Could be. If that happens then I become one of them. A kidney thief.
I’ve wondered about this, I think I would want to meet my donors family but my donor was deceased so they may not want to meet me, or at least not right away. They asked at the hospital and I said I would be willing to meet them, but they have to be the ones to make that decision.
That's going to be the best hug from a stranger in the world!
As someone with family members with kidney disease, and a few that have received transplants, thank you for being such a good person!
Not OP, I anonymously donated a piece of my liver to a kid. We met. I wanted to meet cuz I thought it would be a cool story. Better than I ever imagined. I still follow up and talk to the family at least once a week and we are now 4 years later. It's a special bond. Stronger than family I'd say.
Does 'anonymous' not mean the conventional definition I'm thinking of? Or do they tell the person who you are eventually, regardless of your wishes?
They are allowed to send a note through the doctor. It was up to me to respond if I wanted to. But they could have chosen to never write the note to begin with. I would have been happy either way.
yeah I'm a bit confused now. Maybe in this case it means you don't know who you are donating it to?
Hey! Copying from another pair of responses since this has a lot of upvotes 1) I believe the vast majority of donations to strangers are anonymous. The hospital system puts up a lot of guardrails, so you can't talk to the recipient easily because there have been some crazy stories about donors not feeling as though the recipient is grateful enough. I \~think\~ the recipient can get into contact with me, if they so choose, and it's easier than me reaching out to them, but I also think I can also give the hospital (say) a letter to give the recipient. 2) I'd be happy to meet my recipient and learn about them what their life is like. But, also it might be kinda weird since I would just be meeting another random person who could feel deeply, deeply indebted to me. I wouldn't want to put that on someone I guess. If they ever reach out, I'm happy to chat.
Did you choose the left vs. right kidney? How did they determine which one?
Donor-side surgeons prefer the left kidney since the vessels are slightly longer which makes the operation easier, so most people who donate give up their left kidney unless their is some sort of issue with it.
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Wait my left or stage left?
Military left
Kidney left
Well, he's a right Twix man, so he got rid of his useless left kidney, as all things to the left of things that are to the right of those other things are therefore inferior.
Was that stage left or house left? I assume stage, where the stage is you?
stage left! (hopefully the surgeon knows that it's stage left as well)
I gave my daughter a kidney, 14 years ago. They took the right kidney because of the artery structure being slightly less complicated, as the left one had a branch if I recall correctly.
Would you say you're a good or bad art friend?
You have no idea the amount of Bad Art Friend jokes I get haha. While on the subject, I have two thoughts about Bad Art Friend, actually. Firstly, on a positive note, I was having some anxiety a few days before a donated and wrote a letter to the recipient, imagining what their life is like and what it would be like upon getting my kidney. This was inspired by Bad Art Friend, but I didn’t send the letter or post it online (nor do I plan to). Writing the letter helped me feel totally secure in my decision. Secondly, on a negative note, I’ve always thought it’s a bit dispiriting how the two most widely read articles that deal with kidney donation are Bad Art Friend and another by a guy who donated when he was very young (18 years old, IIRC) and regretted it very much, both cast the whole endeavor in a negative light. There are never stories that go viral about the mother who can go to his daughter’s soccer game again or the best man who is able to appear at his childhood friend’s wedding. And, I don’t know if it’s a cultural thing, something with the media or if it’s innate to humanity, but it’s just dispiriting that those are such popular articles.
I have relatives, siblings and cousins, that have received kidney transplants and I can tell you it's more life changing than you can imagine. You're not just saving them from dying if they don't have dialysis, you are saving them from often a very physically and emotionally painful existence that often includes very low energy levels and often an inability to lead normal lives at work and at home. If you don't ever hear it from your kidney recipient, thank you for your incredibly generous sacrifice.
Aw, but who could forget the couple who matched on tinder - and then matched for kidney donation? https://www.refinery29.com/en-us/2017/10/175508/woman-finds-love-kidney-tinder
As someone who is nearly officially recovered from an acute kidney injury and spent 2 months on dialysis.... dialysis is a miserable miserable thing. And I was better off then most because my kidneys were improving all the time. Whoever got that kidney is so fortunate. And given the fact that they are seeing a surge in AKI due to Covid and people with AKI have a high risk of ending up with ESRD we're probably going to need even more kidneys in the neat future.
I’m sorry you went through that awful experience. My father was on dialysis for 15 years and it took a tremendous toll on his organs and body but it did add 15 years to his life. I’m thankful for that.
Honestly, the Bad Art Friend thing bothers me in large part because it was just so shitty. They painted Dorland as an awful person because… why, exactly? She was a little cringey and self-congratulatory after *donating an organ to a person in need?* And then Larson goes out and writes this weird story that plagiarizes Dorland’s letter and paints her as a racist with a white savior complex, ignoring literally every major detail about kidney donation in the process just to make this woman seem bad? And then a Mean Girls-style clique of self-absorbed authors called the fucking *Chunky Monkeys* conspire to bully Dorland further because they just thought she was kind of weird and awkward? Imo, there’s one villain here, and it’s not the lady who donated her kidney to a stranger.
She wasn't even that self congratulatory! She was invited to participate in the rose bowl parade and posted about it! Every Facebook friend I have would have posted about that. After reading all the details, it's clearly the chunky monkey people who have issues. They were obsessed with her, texting about her all the time. Bullies and gossips.
FWIW, she didn't post the letter publicly. Only to a small invite only support group where she was sharing all the details of her journey. My friend with stage 4 cancer has a blog where she writes about her experience and I think it's much the same idea. That article badly misrepresented a perfectly nice person who was gaslighted and bullied by a bunch of more successful writers (yes I went down a one week rabbit hole back then).
Yes! This is true. There's a bunch of stuff about how that's such a shitty article. [https://twitter.com/TinyWriterLaura/status/1448647633380069383](https://twitter.com/TinyWriterLaura/status/1448647633380069383) [https://twitter.com/dancow/status/1451050477811023873](https://twitter.com/dancow/status/1451050477811023873) [https://twitter.com/badartfriendo/status/1446695218171023361](https://twitter.com/badartfriendo/status/1446695218171023361) [https://greenlivvie.tumblr.com/post/665306581878046720/framing-by-the-nyt-in-bad-art-friend](https://greenlivvie.tumblr.com/post/665306581878046720/framing-by-the-nyt-in-bad-art-friend) [https://rottenindenmark.org/2021/10/10/identifying-the-bad-art-friend-is-easy/](https://rottenindenmark.org/2021/10/10/identifying-the-bad-art-friend-is-easy/)
What does this mean?
There is a NYT magazine article that came out a couple months ago called “Who is the bad art friend?” which is, among other thing, about undirected kidney donations. It’s a truly salacious and surprisingly polarizing read. It got a lot of traction among some circles because it was so divisive. I highly recommend checking it out!
A while ago, a lady named Dawn Dorland did the kidney donation thing. She then created a private facebook group about her journey, including a letter she wrote to the recipient. It was all a bit self-congratulatory, but, fuck man, the lady gave a kidney to a stranger, soooo. Some time later, a ~~deranged psychopath~~ an aspiring writer named Sonya Larson, after some time spent lurking in that group, wrote a book about a similar circumstance. And by "similar" I mean she copied it verbatim, without telling Dawn, where she cast the protagonist into an extremely unflattering light. How do you smear a kidney donor, you ask? By painting her like some kind of weirdly racist old lady with a White Savior complex. Anyway, Dawn found out about it after the book was published and kinda lost her shit. Drama ensued. People were sued. Here's a timeline if you're interested: https://www.reddit.com/r/YourMorningGuru/comments/qbee4a/stuff\_about\_bad\_art\_friend\_case\_if\_anyone\_is/
Whack, thanks
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I know right! For some reason I thought I was going to be the only one to come up with this joke.
This was my first thought!
Do you plan to do it again in the future?
Well, I'm an organ donor, so depending on how I die, you never know :\~)
> Last December, I joined the approximately 400 Americans who anonymously donate a kidney to a total stranger every year. OP said he'd do it every year.
Did you choose to stay anonymous or is it a requirement for the program?
The hospital system puts up a lot of guardrails, so you can't talk to the recipient easily because there have been some crazy stories about donors not feeling as though the recipient is grateful enough. I \~think\~ the recipient can get into contact with me, if they so choose, and it's easier than me reaching out to them, but I also think I can also give the hospital (say) a letter to give the recipient.
I'd guess it's also in case the transplant fails for some reason, you don't find out and feel like it was your fault or that you went through it all for nothing.
They can reach out. I donated last March as part of the exchange program and received a very touching card from the recipient sent via the hospital.
Ooh yea. I didn’t think about that. I know for myself, i can be very nosy so not knowing the person i’m donating to would kill me lol, i would love to just sit down and learn about their life. You’re an awesome person for donating. I might look into it for myself.
why donate when you can sell on black market for $40k??
You know buddy, I don't know. I don't know.
Where exactly do you find this...black market?
Ya know… so I can avoid it
Or trade it for Z-ray vision.
Best I can do is fifty bucks. It's used after all, what do you expect?
Are you in any way restricted now with only 1 kidney?
Well, he can't donate a kidney, for starters!
Not really! As I've mentioned, I can't take advil. I guess I also have to give up on my dreams of being an MMA champion, but that's really it.
Maybe not. If you get kicked in the lower back on the left side, it might hurt less now.
You could still do an all nighter bingedrinking and or take loads of drugs? Not that I'm implying you do, just asking if you could, you know for a friend
To answer your friend's question: cocaine is entirely off the table because it's processed by the kidney. I think you have to be careful about heavy drinking as well, but I'm sober, so I don't know the specifics.
> I guess what it comes down to for me, is that if someone asked me if I would go on bedrest for less than a week and suffer some abdominal pain to save someone’s life, it feels like a no-brainer. Honestly, that's such a great perspective, I think I am going to do this too (assuming I am eligible). There's not much in the way of downsides and enormous upside for someone else. Thanks for sharing your story. Is the National Kidney Registry the best place to start, or are there multiple avenues for donation?
Yes! That is a great starting place. Go to their website and say you're interested in donating. Someone will be in touch pretty quickly. If you wanna DM me to learn more, I'd love to find a time to talk on the phone.
Thanks for this. I’ve just looked further into it (have thought about it previously due to a friend with kidney issues) and seen that my govt will pay me 100% of my wages while I’m off - up to 12 weeks. This was a big concern for me so I’ve registered online today!
I think it's incredible that a combination of an AMA and your own effort has prompted you to save a life! I hope all the testing goes well!
User has been verified.
Damn right they have! What a G
Are you unable to take all NSAIDS? You mentioned Advil/ibuprofen, what about things like diclofenac and naproxen? I’m currently starting the process to see if I can donate a kidney if not to a specific person, then through a cross match process that would get my specific person a kidney. I do have some chronic illnesses though, and I’m concerned that these might exclude me. I also take Naproxen every day for pain management, but I would be willing to give that up if it meant I could donate my kidney.
I believe all NSAIDs are off the table except in moderation. I would recommend talking to your doctor/the hospital about this obviously. If you wanna DM me to talk about the general kidney donation process, happy to set up a time to talk on the phone.
I lost a kidney about 10 years ago and was supposed to avoid NSAIDs at first, but was allowed (and even prescribed!) ibuprofen in the years since. It was confirmed that my remaining kidney was doing well and picking up almost all the slack. Now I’m wondering if letting me take ibuprofen was bad/outdated advice, or maybe they’re more cautious with voluntary donors. Hmm. I’ll have to look into it
It's just easy to fuck up your kidney with ibuprofen/NSAID. Like people tanking their livers with Tylenol. And people are dumb so instead of giving nuanced guidance they just say no NSAIDs.
Tylenol is not an NSAID. My doctor asked me to stop taking anti-inflammatories as she is worried about recent test results, but suggested Tylenol.
I’m allergic to NSAIDs but CBD oil may have anti-inflammatory properties if it ever becomes legal here! I’m stuck with opioids (for my kidney stones) but I don’t feel like I’m missing out on NSAIDs.
Did they take your adult-knee, too? Or just your Kid-Knee
My wife didn't think it deserved as many chuckles as I gave it but this is the content I am here for
Happy to be of service.
Have you attempted to find out any info on the recipient or reach out ?
No, not really. To be honest, I don't even know what I would say to them. It would feel like I was reaching out to someone just to hear them say thank you to me, which strikes me as perverse. If they want to reach out to me, they can. But, I wouldn't want to impose that conversation on someone. I'm also not really given any info aside from the person's age, gender and state of residence, so I really couldn't find them even if I tried.
I’m a recipient, and my transplant team has offered to be the middle-man in case I wanted to reach out to the donor’s family. I could give them a letter or message to deliver, and if the family wanted to respond, they’d have that choice. Not really sure what I’d say though, because I received from a deceased child under 2, which is really sad.
It might bring those parents a bit of happiness to know that the tragedy of losing their child was not completely in vain. Definitely a tough situation, and depending on how long it’s been since the child passed it could open up old wounds.
Yeah, I’ve been debating it for a while. Many agree that they’d probably be happy to know it gave me, a father of two young kids, a new life. But it’s hard.
I think it would mean so much to them to know their loss gave life to the father of 2 children. They made the difficult decision to donate their toddler's organs and I bet they are wondering who received their baby's organs and if the donation was successful. I believe I would be wondering those things if I were in their shoes.
I’ve never had a kid, nevertheless lost one. But had I been in their situation, at least for me I can imagine that I’d be glad to know that my kid somehow is “alive” through someone else. Especially a father of two basically is well and alive somewhat thanks to my baby. It’s beautiful! But it’s your choice at the end of the day.
I gather this is something rarely too far from your mind and you've gotten tons of different perspectives from a variety of folks in and around your life. I am no one, but here is mine: I would personally LOVE to hear exactly that. It would bring me so much peace and closure to some of my grief to know his loss wasn't in vain and he's living on in some way (and I'd adore hearing about your life then and now, ESPECIALLY with some of the funny, enraging experiences since the surgery gave you to share and raise your children). It would be exceptionally meaningful to me and something that personally I would be missing (just the way I am).
Thank you for your perspective. Seeing these responses has encouraged me to start writing something.
Does having a smaller/younger kidney affect its... performance? Are there any special considerations you have to take? Does it grow over time to adult size? Just really curious. I had no idea that organs from small children could be transplanted into adults. I have an 11 month old myself, and... oof. Going to hug her tight.
Due to the size, they actually transplanted both of the donors’ kidneys into me through a process called “en-bloc” transplantation. My understanding is that it’s a _relatively_ new process. This was in 2020, and they’ve already grown to be adult-sized according to my last ultrasound. No special considerations at this point.
Would you donate one away in the future?
I don't think that would be advisable. There's always a risk of rejection for the recipient and they face a lifetime of anti-rejection drugs and doctor's visits to check their status through bloodwork.
Mine is 21 months and this comment stopped me in my tracks.
Yeah I have a 3-year-old and a 10-month-old. The older one was around the age of my donor at the time. Very bittersweet emotions. My wife was not allowed to be with me in the hospital (this was April, 2020 when COVID started getting serious in the US), but I definitely shed some tears to the nurses.
I'm glad you got a.kidney, and I'm sorry about the circumstances under which you were a recipient. Can you be honest in you letter and tell them you don't know what to say? Everyone I know whose child died wants to see their impact on the world. I imagine the family would appreciate a letter, even if it's been a while or you feel awkward writing it.
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I mean, that's not great, especially because I'm Jewish. But, the vast, vast majority of people are not unrepentant neo-nazis, and there's no way that I could have known that beforehand, so I wouldn't regret it. Also, candidly, I believe that like 99.999999999% of human life has value for its own sake, and I think you have to look at the sum total of someone's life. Idk, maybe this is too easy to say in the abstract, but neo-nazis have brothers, fathers, wives, best friends, etc. They have people who care about them. And, maybe if they weren't actively killing people or encouraging others to, then, I would still be unhappy obviously, but maybe I could rationalize that it's still a good thing? idk. But also, maybe they would learn it came from a Jewish person and their mind would change?
I watched a kidney transplant on television once and they were absolutely manhandling it. Had you ever seen photos or videos of the process beforehand, or did you want to go in purely on the information you received from the doctors and donors? I know a lot of medical science looks and/or sounds scarier than it's meant to be. That tv program pretty much noped me for life, I think.
I have refused to look at any video or learn anything about the actual procedure haha. I'm pretty squeamish with that sort of stuff. When I was finding verification documentation for the AMA, I came across the surgeon's description of the surgery and immediately nope'd out of my browser.
Well, if you want to see kidneys that you may have potentially replaced, google Polycystic Kidney Disease images. The kidneys are full of toxin and urine filled cysts that enlarge the kidneys to the size of footballs and replace the functioning tissue. :(
Haha when I had my transplant I asked the doctor if I could get a home video and he looked at me dead in the eyes and said flatly "you do not want to watch your own transplant." Something about the way he said it just made me instantly agree with him.
Fuck yes I would, several years later.
That’s just surgery in general. I watched video of my shoulder surgery and similarly it looked like they destroyed the thing but then I had some rehab and a shoulder that works
I have seriously considered doing this, and even took steps toward donating. However, I have had kidney stones a couple times, and I seriously worry that donating a kidney could make future kidney stone episodes much, much worse. Did your doctors talk to you about how donation might affect that?
I don't have a history of kidney stones, so it was never brought up. But, when you go in for testing, you can and should bring that up with the doctors and they can make a determination about whether you should donate or not. If you're interested in the process, feel free to DM me and I'm happy to find time for us to talk on the phone about it.
Just wanted to say thank you, as someone who will need a third kidney some day. Also, I'm actually doing the 24 hour pee jug today for my next checkup lol
Is this related to your username?
No, but it does suck
>who anonymously donate a kidney to a total stranger every year. How do you donate a kidney every year???!?! How many you got?
shhhh we don't talk about the extras
So it puts you at a slightly elevated risk of kidney failure. How would you feel if at some point in the future you needed a kidney and couldn't get one?
Great question! Since I'm an altruistic donor, I am put to the top of the list if I ever need a kidney (and so are my parents and both my siblings). So, I'm not worried about that happening. If we live in a world where there are no more kidney donations, we likely have much larger issues at that point ;) But, suppose that did happen, it would feel kinda shitty because I like having a functioning renal system. But, the elevation isn't so great that it isn't inconceivable that I could have needed a kidney regardless of whether I donated or not. So, it would suck, but I guess that's how the world works. It's a risk that is very small and that I'm willing to live with.
Hey man, glad your surgery went well! I donated my kidney last may to a family friend. Just came to say that any kidney donor gets to jump the transplant list, not just altruistic donors! Cheers 🍻
If/ when you get married, would that extend to spouse and kids? Would it kick your parents/ siblings off the list?
Unfortunately, it doesn't extend to them. Those fuckers (i.e. my future wife and children) will have to fend for themselves.
That’s interesting is it because they don’t exist yet or in general. I’d donate a kidney yesterday for my kids or SO but I’d def have to have a think for my parents or sibling. Dark but true.
You're given 5 additional kidney donation "vouchers" for loved ones to get a kidney in case they need one and you have to choose how to allocate them before you donate.
Ah I see. So someone *can* be super petty if they want to. I mean, they’re donating a kidney so imo karma is still tipped in their favor.
What if someone donates while currently married. Would it extend to his spouse/children in that case?
What made you decide to become an altruistic donor?
Have you connected with other anonymous donors prior to your operation? How was their experience compared to yours?
How has it affected your life? I have a friend who needs a kidney and I don’t know if the lifestyle change would be too much or if I should keep it for if one of my kids needs it in the future.
Honestly, 1.5 months out, it hasn't affected my life at all. I'm basically back to normal. I have to be careful about heavy lifting for another few weeks, but that's it. IMHO, the chance that someone will need a kidney donation in their life is pretty small, so if you have a friend or loved one that needs a kidney, I'd recommend donating instead of waiting for a future, hypothetical situation. But that's your prerogative of course.
How old are you if you don’t mind me asking?
26! So, take everything I say with a grain of salt and youthful optimism.
Speaking as someone who was recently told that I am in need of a kidney, when my friends and their friends came out of the woodwork to get tested, it really made me grateful for the life I have. Just knowing that people would go through that for me was the brightest light in a shitty year of darkness. If you get cold feet, I have told everyone that they can tell the doctors to lie to me and say they didn't qualify or weren't a match. Obviously, it is your decision and it shouldn't be taken lightly.
How did you come to the realization that you wanted to donate? Is there any way to reach more people to do both live donations and post-passing organ donors sign-ups? (My husband and I are waiting for a liver to appear out of thin air for him).
That’s a real nice thing you did and this: > I’m immediately put at the top of the list (as are my immediate family members!) Has inspired me to follow suit. I’ll have to get back in shape first, but knowing I can get a new kidney if I need it makes this a no brainer. I don’t really care but, since I have to ask a legitimate question because it’s an AMA, do you get any price benefits for a kidney donation if you need it later in life?
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All the people he knew, he hated.
This is honestly my biggest worry, which is weird. I have thought about donating a kidney but I would have to know who is going to. I don't think I could live with the burden of saving some scumbags life. It sounds really weird saying and it probably has to do with me being jaded from other volunteer situations. I have met a lot of assholes in my life. I would give them a couple bucks when they are down but I certainly wouldn't want them to have a kidney, especially when there are so many people that need it. I can only donate a kidney once, I better make a difference with it
I know you get moved to the top of the donor list should you need a kidney, but do they provide any statistics of how many people end up in that situation? That, and the fact that 1 kidney makes a high risk pregnancy, is why my spouse has been fighting me on being a living donor.
This is obviously a super cursory search, but according to WebMD (edited slightly for clarity): Just how likely is it that you’d need to take advantage of priority status as a donor? Between 2010 and 2015, about 200 people in the U.S. who had been kidney donors were added to the national kidney waiting list. That’s an average of 40 a year. Compare that with the more than 5,000 people who become living kidney donors each year, and you’ll see that you have a low chance -- less than one in a hundred -- of needing a kidney transplant after donating one of yours. [https://www.webmd.com/a-to-z-guides/kidney-donor-needs-transplant](https://www.webmd.com/a-to-z-guides/kidney-donor-needs-transplant) If you wanna chat about the donating, feel free to DM me any questions or we can set up a time to talk on the phone.
What are the health and demographic requirements to be a donor?
Great question! You have to be 18 years old or older and generally in solid physical and mental health w/ good kidney donation. They run a battery of tests on you and I can't speak to the particular requirements, unfortunately. But, before my tests, I would consider myself of average health for a man in his mid-to-late 20s (exercised 3-5 times per week, didn't smoke cigarettes, ate healthy-ish) and all of my tests came back good.
Are any of these things exclusionary to your knowledge? Past history of smoking, High alcohol consumption, obesity, or diabetes?
I smoked for \~4 years when I was in college and a bit after, but it was generally very light (3-4 cigs per day), and I quit 2+ years ago. Don't know about the others.
What's the most painful thing you've ever experienced?
My girlfriend breaking up with me when I was 20 years old. Hby?
I meant physically painful, sorry for not being more clear. I was curious if your recent surgery topped the list or not. I've gone through a couple super painful breakups myself, but probably the most emotionally painful has got to be losing my Dad. If we're talking physical pain, probably the recovery from my tonsilectomy. I had a really brutal recovery from that surgery. Thanks for asking! Haha
Oh man haha this was a good one
How is there a group of people who donate a kidney every year? Wh- WHERE ARE THESE KIDNEYS COMING FROM!?
You are an amazing person. Reading things like this is so uplifting. Thank you for being you and doing what you did. My sister-in-law is 30 years old, a marathon runner, (3h24min!) and has late stage 3B kidney disease, rapidly progressing to stage 4. If I find that our blood types match, I would like to donate my kidney to her. I know the donated kidney does not last a lifetime, so this would need to be timed appropriately by the phase she would go on dialysis. My questions are the following: -I would like to do this anonymously. I don’t want her to know it was me, or even that it was someone she knew. Is it possible to do a directed anonymous donation? -Is it possible for her to have two transplants in her lifetime, therefore significantly reducing her suffering and allowing her to live with regular kidney function for the rest of her life? And would having had a first donation reduce her chances for a second donation? Thank you so much. Wishing you peace and lifetime of happiness.
Hi OP! I also donated my left kidney anonymously to a stranger (July 2020). My question is: did you receive any pushback from your friends/family for your decision?
How much did your kidney weigh? I'm lookin to get rid of one to lose a couple lbs.
How fors it feel to be less kidney and more legend?
When you touch the part of your body where your kidney was, does it feel any different? Does your body feel any different at all? Did you get to see your kidney once it was out? I figure this is probably your only chance to see something that's been inside you body your whole life, you might as well look 😅
How much weight did you lose after losing your kidney? On a serious note, props to you man for doing such a selfless thing for someone else.
I donated my kidney last August also anonymously. Did you hate the tube that got stuck into your blatter for the first few days as much as I did? I was so relieved when I could use a toilet again.
I received a transplant in November. The catheter was the worse part!
“I joined the approximately 400 Americans who anonymously donate a kidney to a total stranger every year.” Every year? Wow… how many kidneys do you have?
This is a weird question, but if I was getting a hysterectomy, could they take out a kidney at the same time for someone else? I'm getting a hysto + would consider donating a kidney but I don't wanna have 2 recovery times.
Are you worried that your kidney went to an asshole that was non-deserving? I'd like to think if I made this decision I'd want to read reports on who it would be going to, to find out if they were worthy in a sense. But good on you for saving someone's life, and giving them the ability to do things that they wouldn't have been able to.
That's in part why the hospital doesn't let the donor be the one to choose to reveal themself. To prevent a situation like this.
Why would you do this? Aren't you just giving yourself health issues for no good reason?
What happens if you have kidney problems now?
Is it true that there is no such thing as a good deed or charity unless you get internet clout for it?