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notpeternotpete t1_j4ra7fz wrote

Reply to comment by thetomahawk42 in Dad donates kidney to stranger after daughter's transplant by Roshanrapha

My mom donated her kidney to a stranger a couple years ago and the transplant team was able to make a 6 person donation chain following her donation as a result. The ability to set off a reaction that changes that many lives is a beautiful thing. For folks who are considering donation to a stranger (or a “non-directed donation”), many major hospital systems have registries you can sign up for, and transplant teams will be more than happy to meet with you to talk about the process and associated risks.

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Astavri t1_j4rpxrt wrote

That sounds like a true alturistic donation. No one in your family recieved a kidney in return?

Here's a link describing the chain for anyone else wanting to see it. https://www.mayoclinic.org/tests-procedures/nondirected-living-donor/pyc-20384850

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notpeternotpete t1_j4s184i wrote

Nope! She intentionally wanted to start the chain.

The transplant team’s social worker and clinical psychiatrist did require her to have conversations with my father, my siblings and I individually to talk about how we’d feel if we did someday need a kidney and she wasn’t able to donate to us - we all felt the same way, which was that we didn’t feel that she owed us even the potential of a kidney donation, much less the organ itself. Thought that was an interesting part of the process!

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thecityofthefuture t1_j4t291b wrote

The National Kidney Registry will let you designate 5 people to get "vouchers" that put them at the top of the list if they later need one. I donated to a stranger in September and my parents, wife, and kids all have vouchers if they need a kidney someday.

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srpsychosexythatisme t1_j4skm5f wrote

This is interesting. I work in the dialysis field and know of the transplant exchange system, But never stopped to think that this makes sense vs finding 2 donatees that will just be swapped out with each other. I mean, that would just be a longer process/wait time that would not be very practical at all.

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Aalnius t1_j4uhji9 wrote

its really weird that she was required to talk to her family about this as if we owe family members our organs.

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Luuk341 t1_j4v29tm wrote

I dont think its an "owe" thing.

I had been reading this whole thread and it never even occurred to me that one of MY family members would even need one my kidneys.

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Aalnius t1_j4v69l3 wrote

the bit where it said they were required to talk to their family about it makes it seem like the organs are owed to the family and they have to sign off on you giving the organs away.

Which feels absurd, if it was just a matter of making the patient aware their organs could be used for family they could just state that in the disclaimers.

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Deweyneversaysdie t1_j4sscpj wrote

I donated in a chain 7 years ago through the Alliance for Paired Kidney Donation (Toledo, OH). From what I know, I was a link in a chain 4 donations across the country all within a day or two. A relative of the person that received my kidney was in the system waiting to serve as a link on another chain, too.

If anyone is interested in the donor experience with APD, I’m happy to chat.

https://paireddonation.org/

Edit: Fixed typo

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Astavri t1_j4t2pzj wrote

Where they reluctant to let you do it and why did you do it? What gain is there for you? Even if minimal, ie. spiritual gain, or satisfaction that you know you helped someone.

There's quite a bit of ethic issues that arise from non directed donation that folks wouldn't think exists. You'd think providers would be happy to have volunteers but that's not the case.

There was someone on reddit who made an AMA about it and I feel they shouldn't have been allowed to do it based on the rules of being excluded if you desire to do it for attention since it seemed to indirectly related to attention seeking.

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Deweyneversaysdie t1_j4ta2ln wrote

My SO was nervous. They are more squeamish about medical stuff overall, though. They had a friend that was previously on the waitlist for a kidney for long time, so that gave them some perspective.

I did it after learning about how many people wait for years to receive something life-saving that other people have and don’t really even ever think about in their daily life. I was a blood donor and on the Be the Match registry, so I was already comfortable with the general idea of “giving up” part of me (I don’t feel this way, but that’s how many people talk about it.) When I researched paired donation and found out the potential impacts of the chain reaction, I was even more convinced it was the right thing to do.

I underwent extensive psychological screening and counseling as part of the process, but it seemed like donors that know the recipient undergo other/ possibly more to ensure they’re not feeling pressured, explicitly or implicitly, to do it.

It’s not something I bring up in conversation because I really didn’t do it for attention and I get pretty awkward with some of the extreme praise (“you’re someone’s angel”). I also don’t want to seem like I’m on a soap box or trying to guilt people by something I say. I’m more comfortable talking about it here because you’re all strangers and maybe even jerks, haha.

Here’s what I want to say when people bring it up:

I wish more people would consider it because it was pretty easy in the grand scheme of things and didn’t change my life much at all. I didn’t suffer or sacrifice much, but hopefully the recipient benefited greatly. It didn’t make me a better person. It just had the potential to make a stranger better (physically), and that’s what matters.

I appreciate that much of this thread has been about the process, not one person’s “gift.” It took me a few tries to convince myself to post, but I hoped others would be interested in reading more about organizations that handle paired donation, including the group I went through.

I think I saw that AMA but didn’t participate. I think a better AMA would be with one of the coordinators or surgeons that is involved in the process. They all meet so many people for a short period of time but treat everyone so great. (Like most others in the U.S., I’ve been conditioned to expect frustrating, impersonal healthcare).

Here are 2 quick examples:

I was in awe of how my donation coordinator handled so many different people and tasks, all with genuine care. At one point, I was a potential match for someone and had to travel to the center for advanced testing. It was winter and my connecting flight got cancelled. It was only a few hours away, so after I told her repeatedly I was okay with it, she booked me a rental car. She checked in with me throughout the drive, offered to make sure the hotel had a meal ready for me upon arrival, etc.

I travelled from out of state to donate and when one of the surgeons found out, they invited me to their house for dinner during the week I was recovering locally. It was a low-key family dinner and we didn’t talk about the surgery. I appreciated it greatly.

I’m sorry for such a lengthy response. Like I said, I rarely ever talk about it and I think this was a bit of a healthy release of thoughts I keep to myself. Thank you!

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kookiemaster t1_j4tgnys wrote

There is a lot of scrutiny when you try to make a non directed donation. Here (in Canada) we can do it with a bunch of psychosocial screenings. I struggled to explain why I wanted to donate but basically with very minimal risk to myself I could give someone a decade or two of way better quality of life. It may seem purely altruistic but knowing that some stranger somewhere got a bit longer to live their lives is something very comforting. I did get an anonymous letter from him and it was a father of two who was able to go back ro work so his wife wouldn't carry that whole burden herself. He spoke about being able to see his kids grow up. To know I played a part in it meant a lot to me. That is my "benefit". It has in some way improved my mental health because no matter what I at least did that one good thing.

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Astavri t1_j4uzdiz wrote

It's funny one of the most rare things happens to be on reddit in the same comment chain, someone's mother, and two people themselves.

It's internet so forgive me for my skepticism.

Your history shows talking about personality disorders and anxiety/depression. I don't think they would have let you donate, but I don't let false information fill my mind.

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kookiemaster t1_j4v9rwc wrote

If you are so curious the depression was about 10 years in remission when I donated. If you have active depression sure, likely not possible to donate, but a history of depression isn't a full on counter-indication. I was honest with the psychiatrist about it. The depression was sort of linked to having a schizoid personality and actually understanding how my personality was built did wonders to deal with the depression; enough to get off meds and therapy.

It is true that PDs are kind of permanent but they are only a "disorder" so long as they really impact your functioning. There was a time when it did, but when I donated, it didn't. If you can live independently, work, support yourself and have a reasonably stable life, despite being mostly a loner and preferring solitary activities, I was very happy and content when I donated.

Back then psychiatrist doing the assessment asked me why I wanted to donate, and about things like mood, sleep, etc. I think they want to ensure people realize what donation entails and that your motivation is not linked to a mental disorder.

And well, the anxiety is recent. A derecho hit our city, and to massive trees fell on our house. The follow-up chaos sent me in to an anxiety spiral. I mean, I've been a worrier all my life but only for certain things. House getting destroyed is one of them. So yeah, fun times. But much better now.

And for what it's worth, there is a pretty big Reddit community related to transplants (donors and recipients), to share info on the process, etc.

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cyberFluke t1_j4ugd0m wrote

I feel you. Our lives are at worth it, knowing we made others' lives better, that we saved a life.

I haven't donated tissue, (yet?) but I know I have been in the right place at the right time to save at least one life. I draw comfort from knowing that I made a positive difference somewhere.

Tha's a good egg, as we say round these parts. 🧡

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kookiemaster t1_j4vb0er wrote

I view it as buying ther person time. Pretty much any organ eventually gets rejected but a decade or two is something.

You can also donate post mortem or bone marrow. Still on the registry for that but I think I am getting too old for that.

And even people who get assessed and cannot donate are to be comended. They were willing to do it but couldn't for whatever reason. Can be as uncontrollable as the anatomy of your kidneys (number of arteries, synetry, etc).

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cyberFluke t1_j4vhyqh wrote

Here in the UK, we have an opt-in (except on a new driving licence application, defaults in unless you tick a box IIRC) organ donor registry which will use any bits I'm willing to donate (the lot, if it's of any use to anyone. What do I need it for? I'm dead at this point 😂).

It does require me to either die close enough to a hospital, or die in such a way that my meatbag can be kept on support until they can strip it for parts though. A dead human doesn't stay viable as parts for very long, and our NHS is collapsing before our very eyes (as is intended by the vile vultures in power, but that's another story entirely...)

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kookiemaster t1_j4vv43p wrote

I also registered to donate my body to science (with a university in my city) so of organ donation doesn't pan out I can help train doctors. I think they would still take my body sans the one kidney I gave, but not with the full post mortem donation (won't be much left to use XD).

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srpsychosexythatisme t1_j4sidof wrote

Wow! That’s amazing and beautiful to know this happened. I work with dialysis patients and when my patients get a transplant I am so happy for them. I tell them it’s their second birthday. Without dialysis, they wouldn’t be alive. It is their lifeline. It’s amazing that the US government covers this life sustaining treatment. Now, why can’t this be a thing for other chronic diseases?

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