Donating a kidney?

[clairebear]

A friend of my husband's needs a kidney. She had a kidney transplant over 15 years ago and now needs another one. Neither my husband nor I are a blood type match, but we were told we can do a paired exchange. One of us would donate to a stranger, and their paired donator would donate to our friend. I'm struggling if this is something we should pursue. We are both in our 30's, healthy, with no family history of kidney or other related diseases. We have a 3 and 4 year old and our blood type does not match theirs so we would not be able to directly donate to them if that was a future need. I am self employed and can easily take off, but would lose approximately 4k in income. This wouldn't affect our financials much at all. My H has plenty of sick time and we would not lose income if he did the donation. We split house work evenly, and the person who doesn't not donate would just have to pick up the slack with house and kids. Would you donate, and if so, which spouse would you choose to donate? Only one person can volunteer to do the paired exchange. 

Maybe pertinent information: We are not close with the friend but is a very nice person. She's played tennis with H for 10+ years but neither of us have a close personal relationship with her. She's 69, but super active and healthy except for this issue. She doesn't have any kids or spouse that I know of. No one else has offered to donate or do the paired exchange. She has approximately one year left without a new kidney. 

My gut says go for it, but I'm undecided. Any thoughts or things I haven't thought of? Has anyone donated a kidney and can share their experience? 

[minzy]

shortstax

[ohgillian]

CrazyLucky

[periwinkle]

I donated a kidney to my step-sister through paired exchange a little over 2 years ago. We aren't very close either but I decided to donate after a close friend passed away and I felt like if I couldn't help her (she had cancer) at least I could help someone else. I don't want to write a wall a text so I'll bullet some of the main stuff below.

- If you decide to donate you can always pull out at any time, even the day of surgery. My team constantly reassured me of this and they will say that something medical came up that halted the donation in order to protect you. You'll never be made to feel guilt if you decide to stop midway though the process. In fact, they must have asked me about 8,000 times if I was sure.

- You will be tested extensively. I had about 25 vials of blood taken at my first screening, along with a EKG, chest x-ray, and a CT scan with contrast of my kidneys. You'll have blood taken multiple times right up to surgery due to them having to continually check your blood against your recipient. The good thing is you'll only be allowed to donate if you are in very good health.

- I also had to speak with a psychologist. They want to make sure you aren't being coerced in any way. They also want to make sure you have a good support system behind you.

- I had laparoscopic surgery which was easier, they were able to take my left kidney which is reachable that way vs. the right. Pain wasn't that bad, I was only on the heavy meds for 3 days and then was able to take extra strength Tylenol after that. They blow you up with gas so that was annoying but luckily I didn't get any trapped gas so it wasn't bad. The biggest side effect was fatigue. I was easily exhausted for a few weeks after but within 3 months after I got cleared to work out again I was back in the gym. After 6 months I was allowed to heavy lift weights again.

- Of course there are always risks but they will lay it all out for you so you can make an educated decision. I have a 11 year old and was always worried about what could happen to me. Also, if in the future you need a kidney you are bumped to the top of the list which is nice to know at least.

- My team was amazing (I went through University of Penn in Philadelphia). They were, and still are, always available for any questions or concerns I have.

I don't regret it, even after I had a falling out with my step-sister about a year after (not related to the surgery). The cool thing was a few months after my surgery I got a letter from my recipient. He was a 30yr old dad of a little girl and said that he was finally healthy enough to play with her. It made me so happy to know I was able to help him.

I hope that helps a bit! If you have any questions feel free to PM me.

[erbear]

I’d do it if I could. I have several friends who are kidney donors and they have never expressed any regret, only intense gratitude.

[krystee]

I am amazed at your generosity, to consider doing this for someone you’re not close to. That is really awesome.

My one concern is my family (parents, siblings, etc.) or best friends might need one someday and I would be unable to donate, but I suppose that is super unlikely and it’s better to save the life that can be saved now. And really, you’re saving TWO lives.

Are either of you in better health than the other? Since it’s your H’s friend and you don’t lose income if he does it, my vote would be him if he is willing.

[af1212]

Wow this is amazing that you’re even considering. I’m curious how did this come up?

[vamoose]

I would not even consider it for someone of that age when I have young kids. Maybe I am terrible after reading the other responses? I feel a strong need to prioritize my own health while I have young kids in my home. She is old and has no dependents. I hope someone does it for her, but I also hope it is someone that has fewer people counting on them.

And I feel like a horrible person saying this after the other responses.

[whattheheck]

If you do decide to do make sure your life insurance is where you want it to be because you will likely have difficulty increasing if Later. For the future I mean.

[carmenere]

Apr 10, 2021 22:21:12 GMT -5 vamoose said:

I would not even consider it for someone of that age when I have young kids. Maybe I am terrible after reading the other responses? I feel a strong need to prioritize my own health while I have young kids in my home. She is old and has no dependents. I hope someone does it for her, but I also hope it is someone that has fewer people counting on them.

And I feel like a horrible person saying this after the other responses.

This is a valid concern, although since it’s a paired exchange, there’s a possibility the actual recipient could be someone younger and/or who has dependents.

[clairebear]

Apr 10, 2021 23:21:29 GMT -5 whattheheck said:

If you do decide to do make sure your life insurance is where you want it to be because you will likely have difficulty increasing if Later. For the future I mean.

H is set for life insurance and I don't have any nor plan to get it. I tried but my premiums would be too high based on my below average BMI. I'm 5'11 and slender which skews my BMI. It doesn't disqualify me from donating, I just have to donated to someone with similar weight.

af1212 My H plays tennis with her every week and she mentioned being back in kidney failure and needing a kidney. She never asked us or even hinted. We discussed it and it seemed like the right thing to at least pursue and and see if one of us was eligible.

vamoose Not terrible at all! I really struggle with balancing the needs of my family with the friend's need for a kidney. My family has overwhelmingly been against it but support whatever we decide and would also help with the kids when one of us is in the hospital.

carmenere I almost like the paired exchange better because I feel like I'm helping two people out instead of just one.

[sonrisa]

I wouldn’t in your shoes. I say that as someone whose father died at 70 because of cancer in his kidney. It would have been years earlier if he only had one. You never know what life has in store for you. Wait a bit until your kids are older.

(ETA: the surgeon removed his kidney without consulting the oncologist first and the oncologist was unhappy about that decision. Having only one kidney meant he tolerated chemo worse and had to end it because his creatinine levels were too high. The oncologist would have preferred to do chemo first because even while cancerous the second kidney would have helped filter the chemo and improved his chances. I don’t know if his chemo was unusual but having only one kidney meant he couldn’t stay on the only cancer treatment that was otherwise working for him. That is just too high a risk for me - especially when you have young dependents.)

[scout8]

Apr 10, 2021 22:21:12 GMT -5 vamoose said:

I would not even consider it for someone of that age when I have young kids. Maybe I am terrible after reading the other responses? I feel a strong need to prioritize my own health while I have young kids in my home. She is old and has no dependents. I hope someone does it for her, but I also hope it is someone that has fewer people counting on them.

And I feel like a horrible person saying this after the other responses.

I'm sorry, but this is rubbing me the wrong way. I don't feel that her life is any less valuable because she doesn't have dependents. 

[shortstax]

I have a ton of info and anecdotal advice to share. I’m 6 months out from donating my kidney through a paired donation program through the National Kidney Registry. It’s been a positive, loving experience for me and I’m glad I made the choice, although it’s not the right choice for everyone.

My kidney when to a random man in GA (who I don’t know, but think of often) and then our 12 person chain ended with H’s best friend getting a kidney from a young man in CA.

Recovery was both easier and harder than I thought (I’ll cover details later), but by 3 months out I was back to normal activities without even thinking about the surgery, and by 4.5 months my testing showed my GFR was back in the normal range for adults with my remaining kidney. (Note—during your tests they will evaluate the arteries flowing into each kidney to validate the strength of both kidneys to leave you with the “strongest.” If they’re not comfortable with either one supporting you individually throughout life, they won’t approve you. Which was comforting to me.)

I’m on my phone and will be out and about until this afternoon, but when I’m home later I’ll share a lot of details about how I researched , what tipped the scale for me, and my experience when I can type them out on my computer.

But for now, I will tell you that H is super healthy and could have given too. However, I had the genuine desire to donate (and the ability to give a gift with no strings attached) and DH was more reluctant. He was my rock though, which was needed with a 5 and 9 year old homeschooling through covid while I recovered. Craziness, lol.

Also, I think doing as much research as possible in preparation of deciding to pursue this is smart. That way IF you make the choice to move forward, you can do it with the mindset that it’s the right choice for you.

Ok, thats a WOT in itself, but more content is coming later. Much love it you as you even consider this. ❤️

[icedcoffee]

periwinkle you are amazing! That letter from the recipient! 😭

[shortstax]

Thanks for the tag minzy ❤️

[shortstax]

❤️❤️ periwinkle

Glad to hear about your positive experience too!

[aprilsails]

I think of this on the regular since my Dad was only born with one kidney (found out at 35 when he lost his appendix). No one in the family has the same blood type so we would likely be looking at a paired donation if that was possible.

Based on the information that you’ve provided, it would appear that your husband would be better suited, and if that was something he would want to do I would pursue looking into the possibility.

[wanderingback]

Apr 11, 2021 6:30:03 GMT -5 mofongo said:

Also could you clarify her having a year left? People can live for many years on dialysis.

But the truth is the mortality rate for dialysis at one year is 20% Obviously that’s depends on a lot of factors. The mortality rate is 50% by 5 years. Infection, MI, etc, things not directly related to the kidney often kill people, especially older people. Plus the quality of life can deteriorate a lot being on dialysis. Some people opt to not do dialysis as well because they don’t think the likely poorer quality of life will be worth it (I know that’s not everyone’s experience, especially if one is younger).

Anyway, OP, I would strongly consider it, but would definitely have hesitations as well. I guess I would probably at least do the medical consult and get more information and then go from there.

My partner’s mom got a kidney from a family member and then lived for 4 more years before she died from covid and her quality of life improved so much after she was no longer on dialysis.

[circa1978]

I have a close friend who donated to her father about eight years ago. It went much better for him than her. I think it is normal for that to be the case because the other person is sick and feels "better" right away but she also had a fairly significant complication with bleeding and a very long recovery.

My husband has kidney cancer and I'd give one to him, of course. And I know from him that you will likely never really notice living with just one. I think it's noble to think of doing for someone you aren't close to but I'm not sure what I'd do in that situation.

[Saudade]

My brother was born with only one kidney, so I haven't donated yet because I want to be able to do so if he needs one.

We have a transplant program at work and frequently do the paired program. It's so much fun and so rewarding for the patients.

@sharonsaysso on Instagram talks a lot about her husband's experience with it. He needed a kidney and his mother did the paired donation so he could receive one.

[ste]

Apr 11, 2021 8:45:44 GMT -5 Saudade said:

My brother was born with only one kidney, so I haven't donated yet because I want to be able to do so if he needs one.

We have a transplant program at work and frequently do the paired program. It's so much fun and so rewarding for the patients.

@sharonsaysso on Instagram talks a lot about her husband's experience with it. He needed a kidney and his mother did the paired donation so he could receive one.

I think it was her mother, not his. And the guy who donated to her H was like a 20something regular guy who decided on a whim to fill out the paperwork, with no ties to anyone who needed an organ.

[Saudade]

Apr 11, 2021 8:47:21 GMT -5 ste said:

Apr 11, 2021 8:45:44 GMT -5 Saudade said:

My brother was born with only one kidney, so I haven't donated yet because I want to be able to do so if he needs one.

We have a transplant program at work and frequently do the paired program. It's so much fun and so rewarding for the patients.

@sharonsaysso on Instagram talks a lot about her husband's experience with it. He needed a kidney and his mother did the paired donation so he could receive one.

I think it was her mother, not his. And the guy who donated to her H was like a 20something regular guy who decided on a whim to fill out the paperwork, with no ties to anyone who needed an organ.

Thanks, I couldn't remember if it was his or hers. 

[RoxMonster]

Apr 11, 2021 7:15:36 GMT -5 scout8 said:

Apr 10, 2021 22:21:12 GMT -5 vamoose said:

I would not even consider it for someone of that age when I have young kids. Maybe I am terrible after reading the other responses? I feel a strong need to prioritize my own health while I have young kids in my home. She is old and has no dependents. I hope someone does it for her, but I also hope it is someone that has fewer people counting on them.

And I feel like a horrible person saying this after the other responses.

I'm sorry, but this is rubbing me the wrong way. I don't feel that her life is any less valuable because she doesn't have dependents. 

I feel the same way. I am choosing not to have kids. I still feel my life is just as valuable as those with kids.

I am NOT saying OP (or anyone) should feel obligated to donate a kidney in this situation or any situation. I don't know that I would due to concerns over my own health. But I also don't think we need to say out loud that we feel someone else's life is less valuable because "no one is counting on them." Yikes. Thanks. Great way to start my morning. Glad to know some people find my life less valuable due to not having children.

[heliocentric]

My SIL was an altruistic donor as part of a chain at Johns Hopkins. She had no trouble at all and has zero regrets.

I was tested to be a donor for my mom 15+ years ago. Like a PP said, there is extensive testing and you can back out at any time.

I never ended up donating (not because I didn't want to) so my mom was on dialysis for 7 years. Those were horrible years for her and she was hospitalized and nearly died several times because of infections and other complications. Thankfully she somehow beat the odds and eventually received a kidney from a deceased donor. I cannot begin to describe the change in her quality of life. I mention this because it would be a wonderful gift to spare someone that experience if you feel called to do so.

For context, there was a scare last year with my mom's new kidney (cancer) and they originally told her it might have to be removed. If that had been the case she was adamant that she was going to refuse dialysis. That's how horrible it was for her. (Once again, she beat the odds and they were able to operate and leave the kidney intact.)


Thinking about the positive impact my mom's new kidney has had on her and our family makes me want to look into donating again.

[af1212]

Hearing all of these stories is so inspiring! I feel like kind of an ass saying this but I don’t think I would consider something like this for someone I wasn’t extremely close to. @@@ I have three kids and would just be too worried something would go wrong.

I did donate stem cells to an anonymous recipient in my twenties so I’m not opposed to donation in any way, just I can’t imagine donating something that doesn’t regenerate in my own body.

You are all such wonderful people!

[Pilsy]

I admire you for even considering it. I have no personal experience, and I'm not ready to investigate altruistic organ donation, but if we actually knew someone in need, I'd like to think i'd pursue it.

I agree with those suggesting your husband is probably the better candidate, simply based on his sick time allowance, and assuming you're both healthy.

Best of luck to you and your husband if you pursue it! If you're willing to share, I would love to hear how more about the whole experience.

[shortstax]

This is a whole list of experiences and things that helped me as I navigated this process. Also, if clairebear or anyone else is considering donating, I'd be happy to hop on a zoom call and chat it out. I'm no expert, but I think there's value in hearing many people's experiences (including the parts that aren't as rosy.)

I'll start with some things you mention:

1. Lost wages - if you donate as part of a paired donation and your hospital is part of the National Kidney Registry, as a donor you receive lost wages as part of the "Donor Shield" program. Example - If I would have been a match for BF, I wouldn't have qualified and would have had to take time off unpaid (which I'm privileged to be able to do.) But since that wasn't the case, and the Cleveland Clinic is part of the NKR, Donor Shield paid my time for missed paychecks, mileage for travel for testing/surgery, hotel for the night before (I had to check in around 2am), etc. Here's a link for more info: www.donor-shield.org/ The reimbursement process was really easy and they were helpful if you needed to contact them.

2. Time off - I have a office job that was all WFH due to covid. I took 4 weeks off. Some people take more, although I wouldn't recommend taking less (although some can.) I took 2 weeks vacay, 2 weeks unpaid leave using the lost wage insurance above. I wish I would have taken more as lost wages. I underestimated how wiping out nearly all of my vacation time for the year would suck later on when I needed a mental health day (but that may be mainly due to covid.) Donor shield didn't care whether you wiped out your PTO prior to taking unpaid leave, which I found surprising and grateful for.

3. Matching - some people it's a quick paired match, others take longer. My friend was a really hard match, and it took 4 months of looking for internal paired matches and then about 16 months on the NKR before we got a hit. In that time, there were two "false alarms" where we thought we had it, went for final testing, only for the result to be a no go. This length of time is rare, but it's something to keep in mind. For me, I liked it because by the time the call came, I was all in. Plus, when I was disappointed during those false alarms, that emotion let me know I was ready. It sucked for BF on dialysis, but afterwards I found that one of them was him calling it off. The kidney that was a potential match was coming from someone with a history of hard drug use although they had been clean for 10+ years. He opted out, and it was a risk, but then the one he ended up with was from a 24 year old guys and was a better match.

4. Testing--the coordinators are great, and at any time if you decide not to move forward, they coordinate a response to everyone in the process that based on medical testing you were deemed ineligible. it takes the pressure off you if you decide this isn't your path. I had to do the preliminary testing twice as it's only good for 12 months. AFter the initial blood testing, it's a full day of a battery of tests. It's reassuring as hell as a person to know you're healthy. It included stress tests, xrays, full body dermatology review, 24 hour urine analysis, you name it. It felt good to know for sure I had a clean bill of health. You also meet with financial coordinators to answer questions and help you with processes in addition to a psychologist and a dietician.

Then you have pre-op testing once a match is made and surgery date is set. It's like a mini review of what's listed above. If this happens during the time of covid for you, I also have covid testing every other day the week prior to surgery.

5. Information gathering--my surgery team at the CC was amazing to make sure I was educated about the process and that all my ?s were answered. They shared studies showing the low rate of future complications but also gave the reasoning behind it--if you're approved to be a donor, you're "healthier" than the general public, therefore it's reasonable why donors have a less risk of future kidney failure than the general population. They gave a lot of real talk and were super supportive of anyone who might back out. I went into a Google Scholar rabbit hole and realistically the most I found against it was that donors are estimated to shorten their life span by 4-5 months by doing this. (I'm paraphrasing, I can search for it later.) *for me* knowing that I could be trading that for someone else to have freedom from dialysis and more time was an easy trade-off. it's not for everyone, and I get that.

Fun fact, the first time I met my surgeon (Dr. Wee, he was AMAZING) he asked stone-faced why I was doing this for BF and not my husband if it was his friend. I was a little "well, uhh, I feel..." and he started laughing. He was all, "let me tell you why, men are more scared of pain than women..." He went on to tell me that the overwhelming majority of donors are women, which I found interesting." He was all "you've been through childbirth, this is nothing compared to that..." and I thought "ok buddy, what do you know." But, he was right. Recovery from this was much easier than childbirth and from when I recovered from orthopedic surgery 10 years earlier.

I also found it helpful to read about other people's experiences. There's a former Nest friend who I contacted who had been through it and I found myself in a deep dive on reddit. r/transplant has some great threads if you search for "kidney donor" and I can PM you the thread about my recovery if you'd like.

A bit of warning--there's a FB group called "living kidney donors" or something like that which was thousands of members. I didn't know about it beforehand and joined it during recovery. There are a lot of lovely people cheering people on, but there's also a mindset that people are defined by this act, like it's a brotherhood, and there's a bit of a martyr tone to it all. Just, be cautious on there, lol.

6. Surgery - I had laparoscopic surgery to remove my left kidney. I was out of surgery in a few hours and recovering quickly. My surgery was on a Wednesday am (like 8am) and I was discharged around noon on Friday. I was on a "covid cold" recovery floor, so I was afforded no visitors (and I loved this.) I could sleep as much as I wanted and didn't have to worry about any visitors. I actually think this helped my initial recovery.

7. At home - I was walking gingerly for about a week, but it's the fatigue that really got me. It HURT SO BAD to laugh or cough, but time moves fast and each day was a little better. Sitting up was the hardest part, so I learned how to push myself up to the headboard of my bed with my legs, then grab hold to "pull" myself up. I was really grateful to DH who slept on the couch for about 2 weeks, so I didn't have to worry weather I woke him up or not. Post surgery my only lifestyle change is not using ibuprofen, so that's not bad. My menstrual cycle has been WACKY since surgery, but it's starting to be more regular. that's a weird effect.

8. People's reactions - I had been ready to donate for 18 months, and literally only me, DH, my parents, and BF knew. When I got the date I started to tell my kids to get them ready, and they were so supportive. I posted something about it on facebook the day before my surgery to ask for prayers and bring attention to the kidney donation paired process. The outpouring of love was something I didn't expect and I'll always be humbled by it. I'm tearing up right now thinking about it. That alone changed me forever.

Be ready for people to also tell you that it was foolish. I was surpised (though I shouldn't have been) at the number of people who were all "I can't believe you did that. You may regret this one day!" My inlaws are the worst and they were my biggest source of this. They also don't have a selfless bone in their body, so I get it.

9. Intersection with motherhood - because of some of the comments above, I wanted to add to the discourse a little. There's no *right* answer about this, but this was my perspective. We have no kidney issues that run in our family, so the risk is low that my kids might need one someday. Sure, they might, but that hypothetical situation (for me) didn't outweigh the fact that there are mothers out there who would give anything for their own child to get the call that they've secured a new kidney. Seeing how hard it was on BF after years and years on dialysis only solidified this feeling for me. By donating, I did it for the recipients but also for their family. I like to think that little acts can snowball, and perhaps that helped me make the choice. As part of a paired chain, I also feel the positive feeling like I helped BF (because I helped him secure one) and I helped the random guy in Georgia who's now walking around with a piece of me inside of him forever. That energizes me and warms my heart.

Final rambling thoughts:

Economist Al Roth won a Nobel prize 15 years or so ago for designing this matched process. There's an old Freakanomics podcast episode with him that I found fascinating: freakonomics.com/podcast/make-match-rebroadcast/ I liked that it wasn't all about altruism, but instead about finding a more efficient way to meet needs. I actually listened to it on my drive home from my first testing day and I already knew it was something I wanted to do.

My scars are minimal--3 small "dashes" down my left side, then a c-section like scare at my public bone that swimsuit bottoms would easily cover.

Because I've donated my kidney, I realize that I'm actually more conscious of my health. I drink more water, exercise more, and eat better--primarily because I want to preserve my health because I've donated. I'm sure it's a weird psychological benefit, but it's noticeable for me. I'm only 6 months out, so maybe this "benefit" will dwindle over time.

Best of luck!

[spindle92]

Apr 11, 2021 9:15:09 GMT -5 RoxMonster said:

Apr 11, 2021 7:15:36 GMT -5 scout8 said:

I'm sorry, but this is rubbing me the wrong way. I don't feel that her life is any less valuable because she doesn't have dependents. 

I feel the same way. I am choosing not to have kids. I still feel my life is just as valuable as those with kids.

I am NOT saying OP (or anyone) should feel obligated to donate a kidney in this situation or any situation. I don't know that I would due to concerns over my own health. But I also don't think we need to say out loud that we feel someone else's life is less valuable because "no one is counting on them." Yikes. Thanks. Great way to start my morning. Glad to know some people find my life less valuable due to not having children.

You said it way nicer than I would have.

So basically because we don't have children we are not worthy. So so sad.

[clairebear]

Apr 11, 2021 14:03:05 GMT -5 spindle92 said:

Apr 11, 2021 9:15:09 GMT -5 RoxMonster said:

I feel the same way. I am choosing not to have kids. I still feel my life is just as valuable as those with kids.

I am NOT saying OP (or anyone) should feel obligated to donate a kidney in this situation or any situation. I don't know that I would due to concerns over my own health. But I also don't think we need to say out loud that we feel someone else's life is less valuable because "no one is counting on them." Yikes. Thanks. Great way to start my morning. Glad to know some people find my life less valuable due to not having children.

You said it way nicer than I would have.

So basically because we don't have children we are not worthy. So so sad.

I only mentioned her lack of kids as a way of saying she had no close family members to donate to her. I know she has siblings and her parents are still alive but probably aren't eligible due to age. She has an active lifestyle, and quite honestly I want to be like her when I'm old! She travels a lot, is quite social and plays sports 4x a week. Not having kids does not diminishes anyone's value and wasn't even part of my consideration.