Kidney Donor Side Effects?

Posted by betsypuccirogers @betsypuccirogers, Feb 16 12:52pm

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.

I donated a few years ago and didn't experience that but have heard that it can happen after surgery from the anesthesia and could last a few weeks.
Congratulations on donating! how are you feeling otherwise? How is your sister?

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Thanks for your response! My sister seems to be doing pretty good. All the doctors are very pleased with her new kidney function, but she is retaining a lot of fluid so that's the next challenge. I feel good and I think everything is going as expected. What was really weird, and something I didn't expect was significant pain in my shoulders for a few days post op. I've read that that is a result of either the arthroscopic techniques or the anesthesia. It's gone finally, but it was a surprise. I've had other procedures and anesthesia before and did not experience that.

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@mauraacro

I donated a few years ago and didn't experience that but have heard that it can happen after surgery from the anesthesia and could last a few weeks.
Congratulations on donating! how are you feeling otherwise? How is your sister?

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I meant to start out with thanks for your donation as well!! How are you doing 3 years after the fact?

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The recipient and I are both doing great, thanks! I heard about the shoulder pain before I had surgery and worried about it so much I am surprised I didn't develop some weird phantom pain from dwelling on it so much.
I wonder if there are different anesthesia types and you got one that doesn't work great for you? That may be important to know for potential future reference. Is the Cleveland Clinic good about aftercare support? Maybe they would be able to give you more info.
I found that my questions were answered more easily when I called, rather than emailed but have heard that I'm not very clear over email, so it could just be me.

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@mauraacro

The recipient and I are both doing great, thanks! I heard about the shoulder pain before I had surgery and worried about it so much I am surprised I didn't develop some weird phantom pain from dwelling on it so much.
I wonder if there are different anesthesia types and you got one that doesn't work great for you? That may be important to know for potential future reference. Is the Cleveland Clinic good about aftercare support? Maybe they would be able to give you more info.
I found that my questions were answered more easily when I called, rather than emailed but have heard that I'm not very clear over email, so it could just be me.

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Cleveland Clinic is great with questions so I'll be following up with them too. I live in MN but my sister is in Cleveland in their program. Ill be checking in with my local doctor sometime. Thanks for validating my symptoms. It's nice to talk to others.

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@betsypuccirogers

Cleveland Clinic is great with questions so I'll be following up with them too. I live in MN but my sister is in Cleveland in their program. Ill be checking in with my local doctor sometime. Thanks for validating my symptoms. It's nice to talk to others.

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@betsypuccirogers, I am happy to welcome you to Connect. We are a community of patients who support each other through our own experiences.
I am even happier to hear about your recent kidney donation to your sister. What a blessing for both of you!

As you continue your healing, here are some discussions where you can meet and join with other members who are living kidney donors. Your questions, your comment, and any words of encouragement are always welcome. I had a deceased donor in 2009, so I am sitting on the sidelines.

From a Living Donor: One year later, what is your life like now?
https://connect.mayoclinic.org/discussion/a-post-donation-check-in-one-year-later/
Donated my Kidney: May 20, 2020
https://connect.mayoclinic.org/discussion/wed-may-20-20-kidney-donation/
Kidney transplant – The Journey from the Donor's Side
https://connect.mayoclinic.org/discussion/kidney-transplant-from-the-donor-side/

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@betsypuccirogers, I would like to ask whether your sense of taste has improved since your last posting. Have you been in contact with the transplant team about it and what have you learned?
On the opposite side of transplant (recipient/deceased donor) I had experienced loss of taste prior to transplant and my taste came back almost immediately after my transplant. I do remember the metallic taste to some beverages afterward, though.

Is the metallic taste/smell related to the surgery medications? How long can you expect to experience this?

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Wow. Interesting. My sense of taste is just about normal now. What I learned was that the anesthesia recovery and follow-up pain meds likely contributed to my taste issues. My transplant team also confirmed that my recovery was pretty normal so I am not too worried anymore. Metallic taste is almost completely gone and my appetite is good too. How long ago was your transplant? How are you doing? This whole process was amazing and very interesting.

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@betsypuccirogers

Wow. Interesting. My sense of taste is just about normal now. What I learned was that the anesthesia recovery and follow-up pain meds likely contributed to my taste issues. My transplant team also confirmed that my recovery was pretty normal so I am not too worried anymore. Metallic taste is almost completely gone and my appetite is good too. How long ago was your transplant? How are you doing? This whole process was amazing and very interesting.

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@betsypuccirogers, Sorry for the delayed response. It is wonderful to hear that you are doing so well! It is messages like this that inspire others to step up and to consider living donation.
As for me, I am doing well. Soon to celebrate my 12th year of living with 2 beautiful organs which I hope I mentioned are from a generous deceased donor. I treasure my life and take special care of my new organs as I honor this anonymous donor.

I have shared my story in the transplant discussion – Organ Donation and Transplant: What is Your story? https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

Please visit the discussion group where you can read the stories of others. Please accept my invite to share your story there, where others can read it and learn about living donation.
Stay well and hope to hear from you again soon.

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