I'm trying to find my tipping point
June 12, 2015 7:15 PM   Subscribe

I reached out to be tested as a possible living kidney donor to a stranger in my community who is in need of a kidney. I have since been approved as a donor, but I am really struggling with the question of whether or not to donate. I would love to hear experiences of those who have donated to strangers.

Specifically, what made you donate to a stranger? What was the tipping point that sent you in the direction of going ahead with the donation rather than not?

This is not for a family member where the benefits would almost completely outweigh the risks. I wouldn't know this man if I met him on the street. But, he is someone who's situation has touched me deeply. He is younger than me, a father and a husband. By all measurements, he should be the most 'deserving' of a kidney.

But, should it be mine? I don't know. This is not the easy decision I thought it would be. Am I needlessly putting my family at risk? Do I need to be this guy's savior? Can I handle it if the donation goes ahead but doesn't work out?

What other questions should I be asking myself?
posted by tafetta, darling! to Human Relations (28 answers total) 3 users marked this as a favorite
 
I would be asking more questions about the risks. You're asking the important ethical questions, but from a pragmatic perspective, I'd want to know what I should expect if all went according to plan (and if I could deal with that), and what to expect if all did not go according to plan (and if I could deal with that), and how likely the latter scenarios are.
posted by J. Wilson at 7:20 PM on June 12, 2015 [6 favorites]


Whether someone else will give this guy a kidney is the other obvious question from an ethical perspective.
posted by J. Wilson at 7:21 PM on June 12, 2015 [1 favorite]


Maybe this sounds jerky but if you do donate and then later on have kidney problems, do you get moved ahead in the waiting list? I don't know if that is the case but it seems fair to me. Is that a consideration for you? (And if you would get preferential treatment, do you think you will be okay with that?)
posted by Beti at 7:29 PM on June 12, 2015 [1 favorite]


Pragmatic thinking: will all of your medical costs be covered by the recipient? Including unforseen contingencies?

If that's a locked-down answer, then lean toward going forward.
posted by yesster at 7:37 PM on June 12, 2015 [3 favorites]


Will your donation kick off a chain?
posted by Jacqueline at 7:39 PM on June 12, 2015 [3 favorites]


a friend of mine donated a kidney and the complications were far worse than what she had been told to expect. It derailed her life very seriously for about a year. But she saved a life, and I think now she's glad she did it.
posted by fingersandtoes at 7:41 PM on June 12, 2015 [2 favorites]


You shouldn't do something that's permanent if you have any doubts.
posted by bleep at 7:46 PM on June 12, 2015 [1 favorite]


Maybe this sounds jerky but if you do donate and then later on have kidney problems, do you get moved ahead in the waiting list?

That's kind of a rare occasion, though.

I had dinner with a woman who donated a kidney to a coworker years before she discovered that her daughter had inherited polycystic kidney disease (PKD) from her father. Obviously she was devastated because she would not be able to donate to her own daughter in the eventuality that her daughter starts dialysis.

But also obviously, she was dealing with it. She donated because she wanted to be part of a world where more people were living donors, and by doing that, her hope was to inspire others to do the same for her daughter.

I am at stage 3 with PKD, which right now has no cure. I'm pretty tired a lot of the time and I have some irksome complications. Stage 5 is when it really hits the fan. My brother wanted to be my donor until he was diagnosed with it as well. My grandfather died from this in his 30s, but my dad lived an extra 25 years due to the generosity of organ donors.

As someone who will be on the list to receive a kidney someday, I see cadaver donors as people who have made a wonderfully generous choice, and living donors as those who are choosing to act through a kindness that's superlatively above and beyond what humans should expect from one another. I have a lot overwhelming respect for people who are even considering it, even if you eventually choose not to.

One year after surgery, 90–95 of 100 people receiving living-donor kidneys still have healthy transplanted kidneys, as opposed to only 88 of 100 deceased-donor recipients.
posted by mochapickle at 7:56 PM on June 12, 2015 [14 favorites]


Will your donation kick off a chain?

i.e. Kidney Chain
posted by andoatnp at 8:02 PM on June 12, 2015 [8 favorites]


Call me chicken, but when I was asked, I thought long and hard and couldn't do it. I've donated gallons of whole blood, dozens of platelet donations, gave bone marrow once and have agreed to donate any parts of my body anybody wants, but I just can't get past my fear of undergoing what is unnecessary surgery TO ME. If this is your worry too, it'll be better and easier for the other guy not to get his hopes up that you'll donate, only to crash those hopes ---he doesn't need that kind of emotional roller coaster.

(I backed away before the final round of testing; there was also a possibility that, even if I HAD matched, I could have been rejected because I have three kidneys, not the normal two... freaked the doctor out, that did.)
posted by easily confused at 8:12 PM on June 12, 2015 [2 favorites]


On the other side of the coin: what if no one else is a match, or can donate, and he dies waiting?
posted by third word on a random page at 8:16 PM on June 12, 2015 [1 favorite]


Third word, it's less of an ethical conundrum of that league because people with kidney failure can be kept alive for many years on dialysis. But, they have to spend many hours per week doing dialysis and there are a lot of complications that can and do come with dialysis treatment.
posted by treehorn+bunny at 10:45 PM on June 12, 2015 [2 favorites]


My mom needed a kidney, and all three of her kids tested as a match. It brought up a lot of issues, and my sister ended up donating because she was the one who was most unencumbered- no pressing mental health issues and no kids. Kidney donation is one of the oldest forms of organ donation, and it was a pretty straight forward operation for my sister- it was done laparoscopically, and immediate recovery was not bad. She has since struggled with some emotionally issues based on the type of person my mother is- my sister feels like she saved my mother's life and she should be more grateful, and my mother is not a grateful person. I had young children at the time of my mother's transplant, and I had been willing to do it if there was no one else, but I felt that my kids should be the priority.

My sister worked for a big retail chain and they had a policy for time off for organ donation. All of her medical costs were covered by my mom's insurance (or medicare? not sure) but my sister didn't have to pay for anything.
posted by momochan at 1:40 AM on June 13, 2015 [2 favorites]


My father was born with only one kidney. He's 88 and runs about 15 miles a week, up and down hills.
posted by mareli at 2:42 AM on June 13, 2015 [1 favorite]


Speaking as someone with only one kidney (the other, alas, was sacrificed to renal cancer), and has a friend who is prepared to participate in a kidney chain, I can offer the following:

According to my friend, a live kidney donor automatically goes to the top of the transplant list when and if (s)he is in need of any sort of transplant.

Living with only one kidney is not a big deal. Staying well-hydrated is important. Don't overload on protein (so protein powders and visits to Brazilian steakhouses are taboo). And have a CMP done semiannually to keep an eye on the functioning of the remaining kidney. That's it.

Mine was removed laparascopically. Five days later I was back working out at the gym. Easy-peasy.

But ultimately, it has to be your decision.
posted by DrGail at 4:36 AM on June 13, 2015 [6 favorites]


Donatelife.net can point you to your local organ donation organization, which can, in turn, provide volunteer donors (and recipients!) for you to speak to.

Keep in mind, these donors will have stories that tend to follow 'the party line' of organ donation, but most will speak candidly about the difficulties they have and have had.

There are lots of groups of orgs donors and recipients, and they might be able to connect you to people willing to share their stories.

I'm an organ donor advocate in a volunteer capacity. My own decision is that when I am done having babies, I will give a kidney. My reasoning for this is that pregnancy is hard on the body and I don't want to make it more difficult.
posted by bilabial at 7:12 AM on June 13, 2015 [4 favorites]


I'm hardly an expert on this topic, but this strikes me as a highly personal decision. And what I mean by that is: no-one has the right to criticize you if you opt to not donate. Most people don't really think of how, say, a botched kidney removal might disable you for a year, which could have long term effects on your family. It's not likely - but it's possible. Anyone who would criticize you because you decide there is too much risk to your family is an ass.

As for making the decision, I think J. Wilson described the essentials: lay out the possible negative outcomes, your best guess at their likelihood, and how it would affect you / your family and how you / your family would cope.

I'm not trying to talk you out of it - if you do it, you are simply a better man than I.
posted by doctor tough love at 7:16 AM on June 13, 2015 [1 favorite]


I was tested to be a donor for my father a few years ago and can tell you some of the questions that ran through my head that helped me decide about how I would handle the emotions of what would come if I had donated. When it was discovered that I was not a match, I was asked to participate in a type of kidney chain (which involved me donating to a stranger and would ideally end in my father receiving a matched kidney) but because of my father's health I eventually declined. However, as part of the process, these are some of the questions I came up with to help me sort out my thoughts and feels:

How would I feel if the kidney I donated did not open in the donor? How would I deal with those emotions?
How would this affect my future? If I were to have children, or there was someone close to me who needed a kidney sometime down the road, would I feel regret at donating to a stranger now?
If my remaining kidney fails in my lifetime, how will I deal with the emotions associated with the decision I made to make this sacrifice?
Why am I doing this? Who am I doing this for?
Am I expecting anything from the person I donate to, consciously or unconsciously? Am I expecting anything from myself?
Do I have a strong enough support network to support me in the emotional and physical recovery process?

Also, what stage of approval are you at? Have you gone through the blood-typing only? Or have you been HLA/tissue matched to this individual as well? It might sound cold but before you start to put yourself though the process of thinking about the next steps and questions, it's helpful mentally to know that there are actually next steps to be taken. As part of the donation process, you should be matched with a counselor as well and they can recommend mentors in the donation community who would be willing to talk with you face to face or on the phone about their experiences which can be very helpful. They will also tell you that once you've started the process you have the power to change your mind at any time along the way so don't feel that any "Next step" is a commitment to donation. Take one step at a time, really.
posted by danapiper at 8:12 AM on June 13, 2015 [5 favorites]


Also, you are an amazing person for even considering this, so do not beat yourself up ever for any doubts or second-thoughts you may or may not have, ever. Even if you decide not to move forward right now, you are truly awesome for thinking about it in the first place.
posted by danapiper at 8:14 AM on June 13, 2015 [4 favorites]


I keep thinking about your question.

Several doctors I have spoken with view dialysis not as a treatment, but as a way to keep you alive while you are waiting for a kidney.

The waiting list for a cadaver kidney is about eight years. My dad waited 7.5 years. My dad had been a lifelong athlete. He had been an Army Ranger and a marathon runner. I am not sure he could have waited much longer. Many people do not make it through the wait, but others wait for years and years. It's hard to predict who will make it.

Dialysis can keep you alive but, as treehorn+bunny says, it can be complicated. The dialysis session can take off too much or too little fluid, which will leave you weak. You have to limit fluids, of course, but also protein, phosphorus, potassium, sodium, which all make foods delicious and pleasurable. (Dad was a Southerner and a life without steak and salted corn and a big glass of sweet tea was in many ways harder for him than the dialysis itself.) You have to schedule your life around dialysis. It makes it harder to travel. And waiting for a kidney and not knowing if or when it will come can be very stressful. It's not easy.

You say this man is a husband and father. I can honestly say I wouldn't have gotten to know my dad without the transplant. He passed away recently (heart complications due to the hereditary kidney disease -- hearts and kidneys depend on each other). Had he passed away when I was a teenager, my life would have been very different without him. The transplant literally gave my dad a second chance at life, and with it, he became a person who was more curious about the world, more accepting, more grateful, more dazzled by what life had to offer.

Again, I think you're a hero just for considering it. If I did not have kidney disease, I would become a living donor because I know how powerful a gift it can be. (I recently tried to sign up to donate bone marrow and was rejected due to kidney disease. I was devastated because I will be asking for such a donation someday and have no equal measure to repay it.)

If you're still in the early stages of the match, there are resources and counselors who can talk with you as you explore this. No one would ever fault you for not doing it, but doing it will absolutely change lives.
posted by mochapickle at 9:28 AM on June 13, 2015 [4 favorites]


Here's a thread from years ago about the same topic, which I commented on. I donated a kidney to a stranger in 2002. Feel free to ask me questions, but everything, I mean EVERYTHING! is better now than when I did it.
posted by small_ruminant at 11:22 AM on June 13, 2015 [5 favorites]


And yes, if you've donated you get moved to the front of the line should you ever need a kidney yourself. However, you probably won't, barring blunt force trauma, because your kidneys have to be insanely healthy to be allowed to donate in the first place.
posted by small_ruminant at 11:23 AM on June 13, 2015 [1 favorite]


Living with only one kidney is not a big deal. Staying well-hydrated is important. Don't overload on protein (so protein powders and visits to Brazilian steakhouses are taboo)

And I live on meat and fruit and my lone kidney is still doing awesome, so I don't know about this. Lots of people have only one kidney, don't even know it, and eat the usual terrible American diet.

I'm convinced that kidney doctors give this same advice to everyone, whether they have one kidney or three (which occasionally happens, apparently).
posted by small_ruminant at 11:25 AM on June 13, 2015 [1 favorite]


I have no experience, advice or wisdom. Just wanted to say bless you for your humanity.
posted by raider at 9:41 PM on June 13, 2015 [1 favorite]


Just wanted to say bless you for your humanity

ALL of you in this thread.
posted by DreamerFi at 6:46 AM on June 14, 2015 [1 favorite]


My favourite Aunt suffered a rare kind of bone cancer, that incidentally destroyed her kidneys.
Not only was it a type of cancer with low survivability/remission, she was stuck in a double bind, where many cancer treatments could not be used because she was on dialysis, and none of our extended family could offer her a kidney while she had cancer. We were lucky in that she rode a wave of medical trials which means we did get 5 years with her, which we might not otherwise have had.

In conclusion, cancer sucks, and dialysis sucks about as badly.

This spurred her older sister, another of my Aunts, to offer a kidney donation. She was matched with an anonymous stranger, and it was successful. She got a thank you card, some details about their life - their kids will get to have them as they grow up, now.

My Aunt isn't on Metafilter, but she has no regrets. She is Buddhist, and was comfortable with the idea that it might fail. She's rocking life as hard, or harder than ever.
Having seen kidney failure up close, it's one of those things where you can just... literally save someones life.
Only 1/3 of people on the waiting list ever get a kidney.

I'm putting it off at the moment. If I'm going to be pregnant at any point, I'd prefer to do it with 2 kidneys, so, current idea is up to 5 years after kids, if I have them.
I probably won't know any details about my recipient, as, fingers crossed, hopefully I won't be in the situation of having someone I know, need a kidney.
The only things I've really thought about are, if it is going to a stranger, I'd just be hoping for it to go to a perfect match, so it can work out for longer. Also, as AB+, my blood has always been the least useful to donate (we can receive blood from anyone, can only donate to other AB+), so I feel like finally, I'd be able to do something really useful with it - donate to someone with the same rare blood type. It just seems like that is something worthwhile I could do.
Of course, in 8 years, they'll probably have progressed further with non-matching blood type donations, but I'm pretty sure there will still be a need for kidney donations.
posted by Elysum at 1:45 PM on June 14, 2015 [1 favorite]


In the new kidney allocation system put into practice this year, prior living donors automatically receive 4 points (equivalent to 4 years' waiting time) and get bumped up to the highest allocation category below perfect matches to sensitized candidates. It's a complicated system, but in essence, prior donors skip ahead 4 years and have the highest general-population priority.
posted by WasabiFlux at 4:18 PM on June 14, 2015 [2 favorites]


I know someone who was a living donor to a stranger and she is happy that she did it and has suffered no ill effects. I feel like this is a special secret of hers. Many people carry an extra kidney around hidden inside of them, my friend carries around, hidden inside of her, the knowledge that she gave someone life, and it could be any person she interacts with on any given day.
posted by janey47 at 2:02 PM on June 24, 2015 [1 favorite]


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