Any double donors out there: liver and kidney?

Posted by rebekahinvt @rebekahinvt, Fri, Aug 30 12:09pm

Hi – just wondering if there are folks who have donated both part of their liver as well as a kidney. I’m about 6 weeks post liver donation and was told to wait at least a year before proceeding with a kidney donation. Anyone already done both?

I'm no help here, just interested in the answers.
I donated a kidney & have thought about liver donation but didn't know if I would be flagged as a crazy person for considering it.
Do you know the recipient? I've heard that some places don't like to transplant if not but not sure why.
I've also heard that liver donation is more painful and a longer downtime for the donor. Your experience must have been good if you are looking at donating again. That's great!

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@mauraacro

I'm no help here, just interested in the answers.
I donated a kidney & have thought about liver donation but didn't know if I would be flagged as a crazy person for considering it.
Do you know the recipient? I've heard that some places don't like to transplant if not but not sure why.
I've also heard that liver donation is more painful and a longer downtime for the donor. Your experience must have been good if you are looking at donating again. That's great!

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It is not as unusual as one might think. I know several liver donors who are now considering kidney donation. While it is true that many hospitals require that you know the recipient for your liver, I did lots of research and was pursuing those that allow for non-directed/altruistic donors. There are definitely far fewer hospitals that do living liver donor transplants, and even fewer that take altruistic donors. It has been my experience that there are fewer hospitals that have such restrictions for kidney donors. I am also narrowing my search to hospitals that participate in the kidney voucher program, as I do have a voucher recipient in mind. However, I would leave the decision about who gets my own kidney up to the hospital's transplant team. If you had a positive experience with your kidney donation, I would at least consider pursuing the liver donation (not sure if Mayo allows for non-directed). Good luck!

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@rebekahinvt, Welcome to the Transplant group on Mayo Clinic Connect. The decision to become a living donor requires time and careful consideration. As an organ transplant recipient, I honor your decision to be a living liver donor.

Thank you for your Discussion question about a second living organ donation. It is one that I have no experience with. However, I want to share the following information and resources from Mayo Transplant Dept.

-Living Donor Toolkit
https://connect.mayoclinic.org/page/transplant/tab/resource-36/#toolkit2
-Contact Us
https://www.mayoclinic.org/departments-centers/transplant-center/contact-us/occ-20209784
I encourage you to call Mayo to get the accurate answer to your inquiry. Will you share with us after you collect more information? I will look forward to hearing from you.

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Hi Rosemary,
Thanks, and I’m glad you had a successful transplant!
I have spoken with a transplant coordinator about this already & have already gone through the kidney evaluation process. Now it is essentially a waiting game – was just wondering if there were others at Mayo with personal experience.

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@rebekahinvt my daughter donated a kidney to my f-i-l (her grandpa) in 2003. Now I’m in need of a kidney myself. My daughter thinks outside of the box. She called Mayo to ask if she could donate part of her liver to someone on my behalf in exchange for a kidney for me. She was told:
1. A living liver donor & liver recipient need to be related in some way.
2. The paired donation exchange chain doesn’t work the way she proposed (across organs).
3. She would not be considered for living liver donation since she had already donated a kidney.
That’s our story. Perhaps things are different if the liver donation came first and then the kidney donation? Also various transplant centers establish different policies, criterion, rules & regulations.

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Check out this article -“My liver, your kidney: The world’s first non-identical organ swap” (it’s in New Scientist – sorry, but they are not allowing me to post the link to it here in this reply), but it IS possible, so good for your daughter for thinking outside the box. Also, Mayo might not do it, but there are other hospitals that allow for double donation to non-related recipients (UPMC and Colorado are just 2 that come to mind).

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@rebekahinvt, Since you are a new member, there is a waiting period before you can post links. This is so that Mayo can filter out spam and and protect members. You should be able to share links in a week-1o days. I am happy to assist you in the meantime.

Here is the link to the article: My liver, your kidney: The world's first non-identical organ swap
https://www.newscientist.com/article/2202261-my-liver-your-kidney-the-worlds-first-non-identical-organ-swap/
Thank you for sharing this information!

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@rebekahinvt

Check out this article -“My liver, your kidney: The world’s first non-identical organ swap” (it’s in New Scientist – sorry, but they are not allowing me to post the link to it here in this reply), but it IS possible, so good for your daughter for thinking outside the box. Also, Mayo might not do it, but there are other hospitals that allow for double donation to non-related recipients (UPMC and Colorado are just 2 that come to mind).

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@rebekahinvt May I add my welcome to Mayo connect, and say that the topic you started out with is a real eye-opener! Thank you for your living donation of part of your liver, and the consideration you would also do a kidney. May I ask you this, do you have family members or friends who have struggled with either of these conditions, so you have witnessed the stress it can cause? Your attitude is commendable; I wish it could be bottled and shared with others, that's for sure!
Ginger

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Thanks for the welcome, Ginger! I had a student many years ago who ultimately needed both a liver & kidney transplant. I was friends with her mom and witnessed the years of struggle that they faced. Happily, she had successful transplants and is now pursuing a career in nursing, currently working at the hospital she was treated at as a child. I know that living organ donation is not for everyone, but I feel so strongly that it is the right thing for me to do, so I strive to be informed and learn as much as I possibly can about making this a reality.

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@rebekahinvt

Thanks for the welcome, Ginger! I had a student many years ago who ultimately needed both a liver & kidney transplant. I was friends with her mom and witnessed the years of struggle that they faced. Happily, she had successful transplants and is now pursuing a career in nursing, currently working at the hospital she was treated at as a child. I know that living organ donation is not for everyone, but I feel so strongly that it is the right thing for me to do, so I strive to be informed and learn as much as I possibly can about making this a reality.

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@rebekahinvt I’m impressed with your generosity. You are very selfless. I presume from your moniker that you live in Vermont. Is there a transplant hospital there? I know that Dartmouth Hitchcock on the border does some transplants, not liver, I went to Mass General for my liver transplant.
JK

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UVM Medical Center and Dartmouth do kidney transplants. Mass General is closest for living liver transplants.

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@rebekahinvt I didn’t think there were places up here for liver. Lahey in Burlington does liver transplants also, actually more than MGH does. We went there first but didn’t care for the doctor we saw so chose to go to MGH and could not have been happier than we were with them. I think that U Mass in Worcester does living donor liver transplants also.
JK

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I went to UPMC in Pittsburgh for my liver donation and have been very happy with the care there.

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