Kidney transplant - The Journey from the Donor's Side

Posted by mauraacro @mauraacro, Jan 2, 2018

I’m headed to Rochester on the 10th for surgery on the 12th. I’m excited and nervous! I didn’t know the recipient but have gotten to “meet” her and some of her daughters through phone calls and emails.
I’ve had labs done at my doctor’s office and went to Mayo a few weeks ago for a million more tests. My case was presented to the donor board a few days before Christmas and I was approved and notified the same day. It seems like everything took so long and now is going so fast.
I’m interested in hearing from donors but haven’t had a lot of luck. It seems like the recipients are the ones who post the most, which gives me some info and reassurance but it would be nice to hear from the other side too.

I was at Mayo-Rochester in mid March for the 2 day screening. Everything went well except the CT scan showed I had appendicitis with a mass where the appendix met the colon. They said it should probably come out. When my case went to the board it was put on hold until my appendix was taken care of. It got removed this week and the pathology was negative/normal and I am being resubmitted to the board next week. All that is background information. I'm wondering if there are any donors on here who participate endurance activities (like distance running/marathons, long cycling or mountain biking events, etc.) that I could talk to to hear their experience with their ability to participate in their sport before and after donation. Thanks so much!

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Hi! I’m a liver donor and an endurance athlete. I would be happy to discuss. Also, check out kidney donor athletes website – lots of stories and experiences there.

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@rebekahinvt

Hi! I’m a liver donor and an endurance athlete. I would be happy to discuss. Also, check out kidney donor athletes website – lots of stories and experiences there.

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Thank you so much for the reply! that website is exactly what I needed!

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@mtbiker

I was at Mayo-Rochester in mid March for the 2 day screening. Everything went well except the CT scan showed I had appendicitis with a mass where the appendix met the colon. They said it should probably come out. When my case went to the board it was put on hold until my appendix was taken care of. It got removed this week and the pathology was negative/normal and I am being resubmitted to the board next week. All that is background information. I'm wondering if there are any donors on here who participate endurance activities (like distance running/marathons, long cycling or mountain biking events, etc.) that I could talk to to hear their experience with their ability to participate in their sport before and after donation. Thanks so much!

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@mtbiker, Welcome to Connect. I am glad that you have joined and that you have already met @rebekahinvt and that she was able to provide you with the specific information that you were looking for.

Since you mentioned that you are being screened to be a donor, I have another discussion that you will want to visit –
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/

We hope that you will share your donor experience with us on Connect. Especially your return to endurance events.

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@rosemarya

@mtbiker, Welcome to Connect. I am glad that you have joined and that you have already met @rebekahinvt and that she was able to provide you with the specific information that you were looking for.

Since you mentioned that you are being screened to be a donor, I have another discussion that you will want to visit –
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/

We hope that you will share your donor experience with us on Connect. Especially your return to endurance events.

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Thank you Rosemary! I will check it out.

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I wasn't sure where to post this, there still isn't a ton of info for donors out there and I haven't seen it addressed.
Are organ donors considered high risk for viruses & flu? I don't think we're high risk for contacting it but would it affect treatment making it more dangerous for us?
I am healthy and taking precautions but with things starting to open up, I expect to be back to work soon (Yay!) and more people out & about.

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@mauraacro

I wasn't sure where to post this, there still isn't a ton of info for donors out there and I haven't seen it addressed.
Are organ donors considered high risk for viruses & flu? I don't think we're high risk for contacting it but would it affect treatment making it more dangerous for us?
I am healthy and taking precautions but with things starting to open up, I expect to be back to work soon (Yay!) and more people out & about.

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@mauraacro Good question! You might want to check with the medical team you worked with, for their thoughts on this. There is also a group discussion in the COVID-19 group for transplant patients, and there may be some donors there, also https://connect.mayoclinic.org/discussion/covid-19-in-transplant-patients/
My own thoughts run towards keeping yourself safe, and follow the protocol you would normally, however that means to you. Would you let us know what the medical team says, please?
Ginger

Liked by cehunt57, mauraacro

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@mauraacro & @gingerw my daughter is a living kidney donor (to her Grandpa in 2003). She is a biologist working in some research capacity at Mayo in Rochester, MN. She told me that being a donor does not make her more likely to contract the virus, but if she did, it could be VERY bad. The virus effects lungs & diminishes oxygen to the body. When vital organs (Kidneys) aren’t getting oxygen they will shut down. If you only have 1 kidney, this presents an increased concern. Mayo is diligently working on triage/testing plus working on developing a vaccine and researching possible treatments. My daughter sent pictures of construction of testing facilities set up in parking lots across the street from her office where she usually works. She is working from home now. My SIL works in bio mechanical engineering at Mayo. He is working from home too. They have taken turns going into work during off times when fewer people are around. Mostly they are doing everything they can to stay safe and protect my daughter’s one kidney.

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@cehunt57

@mauraacro & @gingerw my daughter is a living kidney donor (to her Grandpa in 2003). She is a biologist working in some research capacity at Mayo in Rochester, MN. She told me that being a donor does not make her more likely to contract the virus, but if she did, it could be VERY bad. The virus effects lungs & diminishes oxygen to the body. When vital organs (Kidneys) aren’t getting oxygen they will shut down. If you only have 1 kidney, this presents an increased concern. Mayo is diligently working on triage/testing plus working on developing a vaccine and researching possible treatments. My daughter sent pictures of construction of testing facilities set up in parking lots across the street from her office where she usually works. She is working from home now. My SIL works in bio mechanical engineering at Mayo. He is working from home too. They have taken turns going into work during off times when fewer people are around. Mostly they are doing everything they can to stay safe and protect my daughter’s one kidney.

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Thank you for the info.
The transplant nurse didn't offer much besides practice social distancing and stay away from anti inflammatory meds. I'm not sure if that's all the info available or if it's because I'm not sick and have passed my 2 year mark so not covered by Mayo anymore.
It's difficult to find information on this or any virus when I search for results using "kidney donor" or "1 kidney" because the results are geared toward kidney disease or the process of donation. I am pretty awful at The Google though.
I will proceed cautiously and continue to be grateful that I am healthy.

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@mauraacro, It is wonderful to hear from you. Proceeding cautiously is, in my opinion, a healthy choice for each one of us. As the current restrictions are being lifted, I expect that we might be hearing from more organ donor about this question. So, thank you for bring up the question.

Have you seen this discussion – From a Living Donor: One year later, what is your life like now? @mauraacro, Would you post your question again in it? I think it will be seen by more of the living donors.
https://connect.mayoclinic.org/discussion/a-post-donation-check-in-one-year-later/

Liked by mauraacro

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@cehunt57

@mauraacro & @gingerw my daughter is a living kidney donor (to her Grandpa in 2003). She is a biologist working in some research capacity at Mayo in Rochester, MN. She told me that being a donor does not make her more likely to contract the virus, but if she did, it could be VERY bad. The virus effects lungs & diminishes oxygen to the body. When vital organs (Kidneys) aren’t getting oxygen they will shut down. If you only have 1 kidney, this presents an increased concern. Mayo is diligently working on triage/testing plus working on developing a vaccine and researching possible treatments. My daughter sent pictures of construction of testing facilities set up in parking lots across the street from her office where she usually works. She is working from home now. My SIL works in bio mechanical engineering at Mayo. He is working from home too. They have taken turns going into work during off times when fewer people are around. Mostly they are doing everything they can to stay safe and protect my daughter’s one kidney.

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Thank you, @cehunt57, for sharing your unique account from your daughter.

Liked by cehunt57

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@rosemarya

@mauraacro, It is wonderful to hear from you. Proceeding cautiously is, in my opinion, a healthy choice for each one of us. As the current restrictions are being lifted, I expect that we might be hearing from more organ donor about this question. So, thank you for bring up the question.

Have you seen this discussion – From a Living Donor: One year later, what is your life like now? @mauraacro, Would you post your question again in it? I think it will be seen by more of the living donors.
https://connect.mayoclinic.org/discussion/a-post-donation-check-in-one-year-later/

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Thanks Rosemary, I'll post it over there

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