Giving the gift of life

April 24, 2018 6:26 AM

There is something near-miraculous about the organ donation system, which allows tens of thousands of Americans a year to give up parts of their body they no longer need to extend lives There are about 660,000 people in the United Stated being treated for kidney failure. One donor's story.
posted by pjern (17 comments total)

I really appreciate the honesty and level of detail in the donor's story. My cousin's ex-wife's dad needs a kidney. I have the same blood type. I have thought about this a lot. I also have a kid starting kindergarten this fall and am in a new position at work. It doesn't feel like the right time for me. And I feel, maybe not shame, but cowardly and selfish, maybe, that I don't feel like it is the right time for me. Listening to other donors' stories is definitely helpful - to get a good idea of the actual impacts it has on their lives, too. I hope in the next year or two it will feel more like the right timing.
posted by jillithd at 9:43 AM on April 24, 2018

I don't think there's anything *selfish* in wanting to keep your own organs? I'm all in for any of my useful bits being recycled after death, but short of *very* close family there is no way I'd be a live donor and I don't feel even slightly selfish.
posted by tavella at 10:08 AM on April 24, 2018 [5 favorites]

My dad gave a kidney to a family friend; it has been more than 10 years now and both are doing just fine. When he went through the process I was already grown up and out of the house, so it was sort of just an agenda item to ask about during weekly calls back home. But thinking about it after your post, holy cow that was a bigger deal than we made it.

The thing that stuck out the most about the process was how logistically difficult it was for my dad to get time off work/expenses covered. He had to fight a little bit with his work for them to allow enough (unpaid) leave for the surgery and recovery time, he couldn't get any payment from the donee or the hospital other than his direct medical expenses, and my mom had to do a lot of the background work while he was out. Of course he wasn't in it to make any money, but it's crazy to think that he lost a fair bit of money in the process of giving an organ to save a life.

The organ chains the donor describes are a great idea.
posted by AgentRocket at 10:19 AM on April 24, 2018 [5 favorites]

FT last link:

So I was selfishly, deeply gratified to have made at least one choice in my life that I know beyond a shadow of a doubt was the right one. I went through a week of serious pain and a mild recovery thereafter, and as a result, someone got off dialysis and gets to enjoy another nine, 10, maybe more years of life.

Yeah, I am coming from the same place as this guy, and would happily give up a kidney to someone who needs it. What the hell am I doing with it besides filtering out used coffee??

I used to be a blood donor, then switched to giving platelets when I learned I could do it every two weeks. Two weeks, and it only took 90 minutes, and it was so useful -- why not?! But this takes giving tissue to a whole 'nother level that I would be interested in trying. (Yes, I am listed on the National Marrow Donor Registry. Are there others I could sign up for?)
posted by wenestvedt at 11:36 AM on April 24, 2018 [3 favorites]

Thank you for posting this.
posted by mosst at 12:51 PM on April 24, 2018

My real question after reading this (and the donor story was pretty delightful - I may have laughed out loud at the line about his scrotum filling with post-op gas) is what all of the family members in these chains are thinking. Im trying to get in their heads "I have a family member who needs an organ. I would donate to my family member. But we don't match. I would donate to a stranger, but only if my family member gets an organ."

is it wrong of me to characterize this line of reasoning as at least very short sighted/incomplete and at worst selfish. these folks gain the tremendous benefits of other folks altruism but aren't willing to jump in and be that person themselves? It feels like there must be a regulatory solution to this that doesn't require folks literally waiting until their relatives have been matched with a stranger before they will donate, can't they "bank" their donation on the assurance that their relative will be shortlisted?
posted by Exceptional_Hubris at 12:53 PM on April 24, 2018

You could just as easily phrase it as, “I really want my family member to get an organ transplant, and I’m willing to donate to a stranger to make that happen.”

I would consider donating a body part for any reason whatsoever is not selfish by definition. I’m keeping all my body parts until I’m dead.
posted by Autumnheart at 1:17 PM on April 24, 2018 [4 favorites]

Hello, metafilter. This is my story that I am living right now; see my previous ask for details. The tl;dr version is: my wife is on dialysis, it turns out my kidneys are a perfect match for her, and I'm about 80% of the way through the health evaluations. If everything goes well with my tests and with her tests, then we hope to have the transplant surgery this summer.

I confess that I hadn't seriously thought about donating a kidney before this. Like wenestvedt I had donated blood and platelets and had signed up for the bone marrow registry, and I guess that kidney donation had always been in the back of my mind as something I could do someday. And now it turns out that the someday is today.

I wish to tell you, dear metafilter, that dialysis is a terrible, terrible thing. It keeps my wife alive but it kills her in the process. As mentioned in the vox article, dialysis replaces maybe 10% of the kidney functioning, so it leaves the patient tired all the time, still full of toxins and fluid. Generally speaking, you can't hold down a job, you can't go anywhere, you can't do much of anything at all.

There are hundreds of thousands of people in this country just like my wife, tethered to a machine and hoping to beat the dismal survival statistics (expected survival is just 4-7 years depending on the age at which you start), and their families and their children are hoping for a miracle.

Think about it, is all I ask. You might not be able to do it, and that's fine. You might not be able to do it right now, and that's fine too. But maybe you could, quite literally, save a life. You can start reading about it here: https://www.kidney.org/transplantation/livingdonors
posted by fuzzy.little.sock at 1:57 PM on April 24, 2018 [27 favorites]

Yeah, dialysis is an amazing thing (an internal organ replaced with a machine!) but also terrible. It's like if you need 8 hours of sleep a night, but getting a full night sleep only counts for 4 hours worth. Dialysis adds another 3. What about that last hour? Tough, you don't get any more spoons. You're fatigued and there's nothing to be done.

Going on 12 years ago, someone's family decided to donate their organs. With that kidney, I've had more than a decade of life; I've spent time with friends and family, done meaningful work, fallen in love, visited every inhabited continent. I dedicated my Master's thesis to my donor. I'm grateful every damn day.
posted by Homeboy Trouble at 6:10 PM on April 24, 2018 [17 favorites]

fuzzy little sock, you’re fucking awesome. Go, you!!

And I will follow that link now and start reading, because you asked me to. Another link in the chain some day, perhaps?
posted by wenestvedt at 6:58 PM on April 24, 2018 [2 favorites]

One of the reasons I posted this is that I'm in my 4th year of dialysis, and working to be listed for a transplant in the near future. I do home hemodialysis (somewhat rare, I actually have to stick my arm with 15 gauge cannulas twice every session) and spend 3 hours a day, 6 days a week hooked up.

There's a ton of maintenance and management of supplies that goes along with home dialysis, to the point where it is effectively a full time job. The spoons analogy above is interesting, I describe the feeling as having the flu continuously. (As in every day for 4 years). It saps your energy over time, and I'm fairly lucky in being able to manage this illness. Many of the dialysis patients I meet simply don't have the capacity to manage their own illnesses.

I feel fortunate in being surrounded by good, caring, health professionals who have, over time, become more like my family than just caregivers. I'd still trade it all in for another chance at a normal life.
posted by pjern at 7:48 PM on April 24, 2018 [7 favorites]

I went through the process of being tested, matched, and was approved as a living kidney donor for my father-in-law — who immediately, literally the day I started being tested, had a stroke and was thus deferred for a year, and then two months after the stroke, developed a systemic infection that caused a spinal abscess that left him paralyzed. Follow-ons included months of delirium and a permanent bedsore. Transplant was off the table; I never got to donate. This past Christmas, after two more strokes, he decided to end dialysis and passed away a week later, seven and a half years after starting dialysis.

I’ve felt guilty that I didn’t get tested a year earlier. I wonder if it would have prevented the stroke. I suspect it would have prevented the infection, which I think, but can’t prove, came from dialysis. Could I have saved him? Is it my fault he’s dead now? (Please note that no one but myself has ever so much as breathed a suggestion of any of this. My husband flatly contradicts the idea when I raise it. Yet I can’t entirely let it go.)

And yet I also know exactly what’s involved in donating. It’s less than what a lot of people fear (people always imagine a huge incision, but it’s usually done laparoscopically), but it is still a major surgery. It still involves serious pain and risk and cost; no more than other similar surgery, but also no less. I’ve had laparoscopic abdominal surgery; I know how much it sucks and how, while I was walking again within a week, it took two months or more to start feeling normal again rather than exhausted. It sucks — for a finite period of time, but it sucks.

If you are ever tested to be a living donor, they will make very sure you know all of this. It isn’t like donating blood. It isn’t something that can be expected or that anyone should feel guilty for not doing. It absolutely has to be a free choice. It is a great good deed, but it can’t come from a place of guilt. (In fact, it’s disqualifying if you’re coerced or pressured in any way.)
posted by snowmentality at 8:38 PM on April 24, 2018 [3 favorites]

I've probably have told this here before, but in late 2008 my partner Sandra, who had struggled with borderline kidney functionality for literally decades, the after effect of a bout of cancer she'd had in the eighties, finally hit the point where she needed dialysis immediately and a kidney transplant sooner rather than later.

So in 2009 we started looking into the whole process of third party donation: I'd donate a kidney to a stranger and the donor for that stranger would donate a kidney to Sandra in return. A quick round of testing later and it turned out that his wasn't needed, because Sandra and I turned out to match perfectly.

Still took a year before the doctors declared us both ready for the operation but we had the operation just before Christmas that year. Sadly Sandra passed away two years later, but not because of kidney problems, but rather because her immune system, never all that strong since the cancer, had packed it in and she kept getting complications on complications.

But I don't regret what I did, because seeing her on dialysis was worse: that kept her alive but as fuzzy.little.sock said, it killed her in the process.

As for myself, I'm neither better nor worse off with only one kidney. There was a bit of pain after the operation and I was wobbly for the three days I stayed in hospital, but it was back to work after two weeks. I did get a wound infection, but that was quickly fixed with antibiotics.

The one thing I would've done differently looking back was to push more for getting the operation quicker. In hidnsight the doctors were far too fixated on getting me to lose weight for it that only marginally improved my chances at the expense of Sandra's. I was still overweight when the operation did happen and I can't imagine the 10-15 kilos I'd shaved off made that much difference.
posted by MartinWisse at 12:12 AM on April 25, 2018 [3 favorites]

In the 18+ years since my kidney function gave up the ghost due to FSGS, I've done hemodialysis, had and lost a transplant, done peritoneal dialysis, and am now back on hemodialysis. Kidney failure ain't for sissies, but at least it's not liver failure. If anyone needs to talk or has questions, feel free to memail me.
posted by Daddy-O at 8:44 AM on April 25, 2018 [3 favorites]

Years ago, my 16-yo son was in a car accident and declared brain-dead several days later. We donated all of his organs. In that moment, with everything else going on, it was a difficult decision and nothing the transplant group did made it any easier. I remember the (lengthy) questionnaire from the transplant nurse being so explicitly, brutally insensitive and personal that my wife left the room in tears just half way through. But we still thought it was the right thing to do. I know that at 35-yo women somewhere got his pancreas and 60ish-yo men got his heart and his liver. I don't remember who got anything else. We let the transplant coordinator know that we would be happy to communicate with the recipients, but we never heard anything back. Nothing. I hope, like Homeboy Trouble, that the recipients went on to have interesting, meaningful lives, but I'll never know. I just know that my son died.

Would I do this again: no, I don't think so.
posted by codex99 at 3:05 PM on April 25, 2018 [9 favorites]

Big love to you, codex99.
posted by jillithd at 7:03 AM on April 26, 2018 [1 favorite]

After my mother was hit by a man driving a car, me and my father were in a similar situation. She was declared brain-dead, and we were approached by the liaison for the local transplant organization. We wanted to donate whatever was possible, because that's what she would have wanted and we believed in it too. They started trying to stabilize her body and her organs so that transplants could occur, but it wasn't possible. The possibility of transplants had become important to me because it was the only thing left to hope for; the only way left for something good to happen in all of that. It was hard, when even that was gone. We told them to take whatever would be useful still, and I believe they took various tissue samples for research purposes. I still wish we could have done more.

I'm sorry your experience was so terrible, codex. The liaison I worked with was kind, but we also didn't get very far in the process. It's a hard thing all around.
posted by vibratory manner of working at 4:38 PM on April 27, 2018 [2 favorites]