Donated my kidney: Food/drinks taste weird. Related?

Posted by betsypuccirogers @betsypuccirogers, Feb 16, 2021

Hi all. I donated a kidney to my sister a few weeks ago (Cleveland Clinic) and one thing I noticed is that a lot of foods/drinks taste weird now. I have my sense of taste and smell but many things now taste metallic. Does anyone out there have similar experiences? I'm not taking anything except Tylenol for pain so I don't really think it's that.

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@gingerw

@2kids Welcome to Mayo Clinic Connect! It is really a gift to be able to test to see if you are a match for your sister!I hope all goes well, and if you cannot be her match, be sure to talk about a paired donation where you can donate to someone and a match is found for your sister, so everyone benefits.

Here is an article from the National Kidney Foundation, about donating a kidney and what to expect afterwards: https://www.kidney.org/transplantation/livingdonors/what-expect-after-donation. As you can see there are some preferred restrictions involved after donation. Living a healthy and active lifestyle is best.

What is the reason your sister needs this transplant?
Ginger

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She found out around 20 years ago that she only had 1 working kidney. We are not sure why the other one stopped working. I am wondering how people are feeling 20-30 years after they have donated a kidney. Have they had health issues, has it shortened their life span or quality of life?

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@2kids

She found out around 20 years ago that she only had 1 working kidney. We are not sure why the other one stopped working. I am wondering how people are feeling 20-30 years after they have donated a kidney. Have they had health issues, has it shortened their life span or quality of life?

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@2kids A person can successfully live with one kidney. It's the only organ we have that we get a spare at birth! Any medical professional will counsel a healthy active lifestyle no matter your situation. In the case of kidney donation, they also tack on no motocross motorcycle riding/racing, no wrestling to eliminate chances of hurting the remaining kidney.
Ginger

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My wife donated her kidney to me 32 years ago. She says, “I remember that at first certain tastes and smells seemed weird. I ignored it and after a while it diminished. One day I realized that it was gone!” She’s had no adverse health effects since then and at 67 is very healthy and strong.
Then, 11 years after the first one, my son donated one of his kidneys to me. He has never noticed a difference in anything. In fact, the only issue he ever had was right after he donated. They had shaved some of his pubic hair so thay could take the kidney out through a central incision. The itchy and sore pimples as his pubes grew out was a huge problem for him.
I have confidence that your tastes will return to normal. I know how it is tho… after my cochlear implant things tasted metallic, salt was super strong, sugar intolerably strong (!) and citrus fruits were terrible. by the 6 month mark that had all returned to normal, though I am still not liking salty foods I once loved.
Take care and be patient.
You were so generous to donate to your sister, I applaud your decision.
L

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@lizzy102

My wife donated her kidney to me 32 years ago. She says, “I remember that at first certain tastes and smells seemed weird. I ignored it and after a while it diminished. One day I realized that it was gone!” She’s had no adverse health effects since then and at 67 is very healthy and strong.
Then, 11 years after the first one, my son donated one of his kidneys to me. He has never noticed a difference in anything. In fact, the only issue he ever had was right after he donated. They had shaved some of his pubic hair so thay could take the kidney out through a central incision. The itchy and sore pimples as his pubes grew out was a huge problem for him.
I have confidence that your tastes will return to normal. I know how it is tho… after my cochlear implant things tasted metallic, salt was super strong, sugar intolerably strong (!) and citrus fruits were terrible. by the 6 month mark that had all returned to normal, though I am still not liking salty foods I once loved.
Take care and be patient.
You were so generous to donate to your sister, I applaud your decision.
L

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@lizzy102 thanks so much for your detailed response. Just a curiosity question…you mentioned that your first kidney transplant lasted 11 years from your wife. How long did your transplant from your son last? …
Is it still working well 22 years later? 🙂

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@2kids

I will start the 3 day testing process at the Mayo clinic next week to be a kidney donor for my sister, who has been put on the transplant list. Can anyone tell me how the donor transplant has effected them long-term? Are you still able to go out and drink with your friends? Any health/energy issues after the procedure?

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@2kids, Have you started the evaluation process yet? Which Mayo campus?
I am a recipient (Mayo Rochester) and I am aware of how involved the process is from a recipient point of view. How can I be of assistance as you navigate the tests and the busy schedule? What questions would you like to ask?

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@rosemarya

@2kids, Have you started the evaluation process yet? Which Mayo campus?
I am a recipient (Mayo Rochester) and I am aware of how involved the process is from a recipient point of view. How can I be of assistance as you navigate the tests and the busy schedule? What questions would you like to ask?

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I have finished the testing at the Mayo in Rochester, MN– and am WAITING for the results (they said I would know last Thursday or Friday). I have a good understanding, I think, of the recovery period after the surgery —– I am wondering more about the long term — 2, 5, 10 years down the road. How has your daily life changed? Can you do all that you did before the surgery? I realize it may be different from the recipients point of view, but still would like to know.

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@2kids

I have finished the testing at the Mayo in Rochester, MN– and am WAITING for the results (they said I would know last Thursday or Friday). I have a good understanding, I think, of the recovery period after the surgery —– I am wondering more about the long term — 2, 5, 10 years down the road. How has your daily life changed? Can you do all that you did before the surgery? I realize it may be different from the recipients point of view, but still would like to know.

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I donated a kidney at the Mayo in Rochester in June 2021 and I feel 100% normal now. I am able to do anything physically that I want, including mountain bike…I do that 3-5 times a week. My fitness isn't quite were it was pre-donation, but I trust it will get there. I don't follow a special diet, and the thing I concentrate on most is staying hydrated. I have a glass of ice water in front of me almost all the time. I realize you are looking for longer term recovery, but thought I'd share my short term perspective.

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@mtbiker

I donated a kidney at the Mayo in Rochester in June 2021 and I feel 100% normal now. I am able to do anything physically that I want, including mountain bike…I do that 3-5 times a week. My fitness isn't quite were it was pre-donation, but I trust it will get there. I don't follow a special diet, and the thing I concentrate on most is staying hydrated. I have a glass of ice water in front of me almost all the time. I realize you are looking for longer term recovery, but thought I'd share my short term perspective.

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Thank you for donating a kidney! You are fairly new on your recovery from the surgery, and it is nice to hear you're progressing so well!
Ginger

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@mtbiker

I donated a kidney at the Mayo in Rochester in June 2021 and I feel 100% normal now. I am able to do anything physically that I want, including mountain bike…I do that 3-5 times a week. My fitness isn't quite were it was pre-donation, but I trust it will get there. I don't follow a special diet, and the thing I concentrate on most is staying hydrated. I have a glass of ice water in front of me almost all the time. I realize you are looking for longer term recovery, but thought I'd share my short term perspective.

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@mtbiker, Thank you for your generous living kidney donation. Did you know the recipient ahead of time?
I like your plan for having a glass of ice water nearby!

When I read in your response that you feel 100% now, I want to ask you whether that was a surprise to you when you realized how quickly you recovered? Do you know whether that was a result of your excellent physical fitness as an endurance athlete?

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Yes, I donated to a former teacher I had about 40 years earlier. I was definitely surprised how quickly I recovered. I wouldn't say I was in excellent physical condition, but I did/do exercise regularly, mostly riding a bike. That likely had something to do with the recovery. I donated June 8, and walked a total of more than 30 miles the week of June 14-20 and averaged 30-40 miles a week every week until I was cleared to start riding a bike again at 8 weeks. The Dr. said the best things I could do to aid my recovery was drink a lot of water, take naps, and walk, so I did. Early on it was 3 or 4 shorter walks a day, and as time went on the walks increased to 5 or 6 miles once a day, but every day. Also, for the first 6 weeks I napped pretty much every afternoon.

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