Living Kidney Donation Questions
May 14, 2010 10:41 PM   Subscribe

I have some general questions about living, anonymous kidney donation.

I've been thinking about living kidney donation casually for about a year, and would like to think more seriously about it this coming year. I'm an early-20s male, living in the US. I'm in average health, with no past or present serious or ongoing medical conditions. I do not drink or smoke. I use no drugs, legal or otherwise. In about a year, I will have a 2 to 3 month window where I will be between my current job and grad school, in town with my parents and other emotional support, and with little to no need to earn income.

I'd like to hear from those involved, particularly living kidney donors and medical professionals, about what questions I should ask, organizations I should contact, and the potential physical or emotional complications from this procedure. I do not need a discussion of the relevant merits of transplant versus dialysis or other appeals to donate. Some additional considerations:

- I have no family members or friends in mind to receive the donation, and would like the process to remain entirely anonymous - I have no desire for another person to feel indebted to me personally. At the same time, it would be essential to have all direct medical costs taken care of by outside funding. With no recipient in mind, can I still schedule a procedure for a particular date? Can I guarantee anonymity while still accepting funds for the procedure?

- Though I believe strongly in the equal merit of human life (and believe kidney donation can be one way I have to commit to that belief), I do have some hesitation because I fear a hypothetical situation in which I grow close to someone later in my life who requires a transplant that I am unable to give. Again, there is currently no one in my life to whom this applies. Is this fear realistic and how do I deal with it?

- I have some general hospital and medical procedure anxiety which presents my biggest psychological barrier to donation, particularly around the insertion of needles and catheters. I've never been hospitalized. What are good ways to deal with this anxiety?

- What, realistically, are the long term physical implications of living with one kidney? Is there any reason to believe I could later require a transplant or dialysis because of my decision to live with one kidney?
posted by l33tpolicywonk to Health & Fitness (14 answers total) 6 users marked this as a favorite
Sure, there's a chance your one working kidney will fail, but if that should happen, because you were a donor, you move to the top of the donor list. At least that's how it is here in the Bay Area. So you likely wouldn't need dialysis. One perk of organ donation.
posted by wherever, whatever at 12:01 AM on May 15, 2010

What, realistically, are the long term physical implications of living with one kidney? Is there any reason to believe I could later require a transplant or dialysis because of my decision to live with one kidney?

Definitely a possibility. Not judging what you are doing at all, but living with one kidney is reasonably serious, man. It's not like donating blood marrow; you will be looking at compromised health and body function for the rest of your life.

Not saying don't do it; but you will be giving away something your body currently uses, ideally needs, and cannot be replaced.

Be careful researching it online, there's some pretty bonkers info out there. here's a good fact sheet with the basics..
posted by smoke at 12:48 AM on May 15, 2010

uh, obviously I mean bone marrow there...
posted by smoke at 1:55 AM on May 15, 2010

i can't find a citation for it, but i was told years ago that a person can live just fine with 30% function in just one kidney. the reason i was told that is because my father had a kidney transplant back in the early 60s--he was essentially an early transplant when the procedure was still experimental. he lived for a year following the transplant.

2nding thinking about doing bone marrow or stem cell donations instead of shedding an organ, though. marrow & stem cells are replenished; organs are not. and marrow & stem cells can be as much of a lifesaver as an organ. my brother had a stem cell transplant 6 years ago & he's doing GREAT.

if you're determined, the national kidney foundation which smoke linked to above is the best (and maybe only?) place to start. they've been doing this a loooonnnggg time.
posted by msconduct at 5:23 AM on May 15, 2010

Do you have your heart set on donating a kidney? From what I understand you might be better off donating some of your liver tissue. Again I'm no doctor, but from what I've heard your liver will actually regenerate itself. You could donate without any worry about the side effects of living without a major organ.
posted by TooFewShoes at 7:24 AM on May 15, 2010

There's an account today on the Guardian site by a woman who donated a kidney to a stranger. Worth reading about her experience.
posted by zadcat at 7:59 AM on May 15, 2010

Living with one kidney is perfectly doable, but, does require a lifestyle change. I only have a left kidney (due to cancer, not donation.) I can not take NSAIDs as they can damage your kidneys and with only one it isn't worth the risk. You have to watch what sports you are involved in, so as not to injure the remaining kidney.

But, I also have almost normal kidney function and this is only 18 months post-nephrectomy. Your remaining kidney will grow to compensate for the loss of one.

What you are thinking of doing is an awesome thing and could change the life of someone, and their family, immensely. Taking someone from dialysis to having a working kidney is incredible.
posted by SuzySmith at 8:16 AM on May 15, 2010

I have personally known 2 people who have had a kidney removed and they went on to live pretty normal lives. You would have to be careful not to overindulge in foods with high levels of potassium, like fruits and vegetables, especially tomatoes and melons. Potassium is what lethal injection is made of.

How would you feel if you found out that the kidney you donated only lasted for a short time and then had to be removed? I can assure you in no uncertain terms that this sometimes happens.
posted by Daddy-O at 8:21 AM on May 15, 2010

Response by poster: How would you feel if you found out that the kidney you donated only lasted for a short time and then had to be removed?

I would only do this if I were insulated from any information about the recipient, good or bad.
posted by l33tpolicywonk at 9:33 AM on May 15, 2010

My sister gave my mom a kidney a year ago. Both are doing great, my mom more so because her kidney function was so bad before the transplant, that afterward being able to eat foods she had to avoid prior and stop taking medicine really made her quality of life better. My sister, because she wasn't sick before the transplant, had a harder recovery but now has no issues at all. She must avoid certain pain medication, but for the most part will have no long term side effects. One thing I learned about kidney transplantation is they have been doing them forever and for the most part all parties do really well.

You will need to go and be tested, and even if you test positive for a match, there will still be tests right before the operation to make sure you still match, the surgery will be scheduled, but note that because the teams are huge the surgery might be rescheduled (that happened to my mom and sister and it was postponed a week.) Also your match will need to be healty to have the surgery and sometimes dialysis can kick up issues, so even if the operation is scheduled it can still be canceled.

Medicaid and insurance cover all of the costs related to the surgery.
posted by momochan at 4:43 PM on May 15, 2010

Best answer: Another good story about anonymous kidney donation at the New Yorker, but unfortunately their archives seem to be behind a paywall. But I think you need to find a way to read it. It seems with anonymous donations, the least difficult part of the whole process is the actual transplant itself.

I have been lopsided for several years now (donated a kidney to my father whose kidney function was dangerously low due to complications from diabetes) and I feel no difference in quality of life before and after the operation. It's a significant comfort to know that you will go to the top of the list should you need a kidney at some point in the future, if you have donated.

For me the decision was a very easy one. The certainty I felt that this was the right thing to do really eliminated any fear or hesitation from the process. It was either do this, or your father suffers and possibly dies. Of course, this dynamic is different with an anonymous donation. But if you are really committed to possibly saving someone's life, then the barriers recede and the parts of the procedure just become steps in the process of getting to that goal.

Best of luck to you whatever you decide.
posted by lovejones at 6:39 PM on May 15, 2010

Best answer: My landlady donated a kidney just a couple months ago. It was going to be anonymous but I think she wound up meeting up with the person, or at least being told about them. I'm sure she would be happy to talk about it - MeMail me if you would like to do so.
posted by Earl the Polliwog at 11:38 PM on May 16, 2010

Best answer: Go to LivingDonorsOnline. This site has a massive amount of helpful information. Be sure to go to the Experiences section to read narrative accounts of people's experiences with living donation. Also check out the message board, where people have conversations about anything and everything having to do with living donation. It seems like MOST people have good experiences (I did), but I personally wanted to find out in advance about all possibilities, good and bad.

If I were you, I would call the living donor coordinator at your local hospital and tell them that you're thinking about it and want to learn more. They should give you information, and then, if you're still interested, you can at least start the testing process. Don't worry about not being sure right away -- you'll have many (I repeat, MANY) opportunities to back out if you decide you don't want to do it.

I donated on behalf of a friend, expecting that a year would be plenty of time to get the thing done and be entirely recovered with time to spare; however, I barely got the surgery done in that time frame. The process was long, slow, and frustrating, in large part because I had a specific time frame in mind. (I actually ended up deferring beginning a graduate program because of my kidney donation, which was extremely frustrating at the time, but I don't regret it now.) So, if you start the testing process NOW -- like just the basic blood/urine tests, which, for all you know, could rule you out -- you will have LOTS of time to research the whole thing. I did, anyway. I gathered a huge amount of extremely helpful information from LDO. I also learned about the experiences of people with kidney failure and on dialysis (beyond those of my friend) by hanging out on a site called; I got a lot of insight there that helped me stay the course in spite of various frustrations with the system. It's really okay, though, to start the testing process and then decide you don't want to do it, for any number of reasons.

I donated just under 2 years ago and am FINE; once the wait was over and the surgery got underway, everything went very smoothly for me. However, although most donors seem to agree that they would do it again if they could, not all have experiences that are as problem-free as mine was. Oh yeah, another thing: Friends and family may well think you're CRAZY to even consider donating, so I found it helpful to keep the whole thing pretty low-profile until I was fairly sure that I was going to go forward. Also, regarding your question about someone close to you maybe needing a kidney in the future: I have a sister who theoretically could need a kidney someday, but my friend (and about 90,000 other people) need one now. I just couldn't see hanging on to my kidney and possibly taking it to my grave on the chance that someone else might need it someday.

There's more to say; it's a complicated subject. Although I personally have no regrets about doing it, I do have complaints about the system and the lack of support for living donors -- from the medical establishment as well as society at large -- that make me leery of actually recommending that anyone do it. However, I am very glad that I did.

Please feel free to memail me if you want more information.
posted by littlecatfeet at 1:18 PM on May 17, 2010 [2 favorites]

Best answer: A couple more things: Many, if not most, of the diseases that cause renal failure are bilateral; that is, they'll knock out both of your kidneys, so having the "spare" isn't going to help you. However, there are situations (such as cancer or trauma due to accident) in which that "extra" kidney would be the only thing standing between you and the dialysis machine.

Also, not wanting to split hairs, but it's my impression that the belief that kidney donors go to "the top" of the transplant list is not, strictly speaking, true. Kidney donors definitely get extra points that push them up on the list, but, top of the list -- No, not as I understand the system, which (in theory anyway) is the same nationwide. So, yes, there are risks involved in having only one kidney.

Another thing about the possibility of someone you love needing your kidney someday: I guess I am hoping (unrealistically perhaps) that just as I stepped forward to help my friend, someone else would step forward to help my sister if she needed it -- in part because of the example set by those of us who already have donated and shown that it is a doable thing. On the other hand, by the time my sister or your hypothetical loved one needs a kidney, they may be growing them in petri dishes and there will be no need for anyone to donate: as far as I'm concerned that's all the more reason to do it now -- IF you decide it's something you want to do. Again, there is no dishonor in weighing the risks and then deciding not to donate. You are a special person for even considering it.
posted by littlecatfeet at 2:10 PM on May 17, 2010 [1 favorite]

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