1. < Transplants

Living liver transplant donor -- I need some support and help:(

Posted by jason123 @jason123, Jul 27, 2022

Hi all -- my name is Jason and my loved one is currently listed on UNOS with a low MELD score at a transplant facility here in Texas. We're told that she's a great candidate for a 'living donor transplant' and we're looking to Mayo since we've been to both the Rochester and Phoenix campuses before. (1) We are both blood type A (her Rh is - but mine is +) and my understanding is that the Rh factor does not come into play for liver donations. Have you guys heard that?, or does it need to be "A negative" donor to "A negative" recipient, etc...(2) I haven't seen any "living donor transplant" date from the Phoenix campus which I found strange. Is Rochester the only campus performing them? (3) has anyone been through the living donor liver program and, if so, what's your experience been like? Mayo has been, in my dealings with them, a well-oiled machine but I wanted some "real talk" from folks who (although we don't know each other and are simply behind a keyboard as we type these things) I somehow just trust because we're all on here for a reason to simply get through life together. I feel silly asking these questions but I want to help improve her quality of life to the best of my abilities so any information about your experiences, any guidance, or any additional information you may have in case I haven't asked the proper questions would be greatly appreciated. Thank you guys so much. I'm humbled by any information any of you can provide. Kind regards -- Jason

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rose999 | @rose999 | Jul 27, 2022

The negative doesn’t play a part. MELD still plays a role but if she has bleeding varices and ascites or other factors that will come into play.

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2 replies
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 27, 2022

Welcome to Connect, @jason123. You are a real friend to consider the gifting of life to your special person. Your questions are appropriate and by presenting them in this discussion, we can all learn together.
I had my transplant at Mayo Rochester in 2009, so I can give a 100% plus recommendation to the transplant department there. I am also confident in recommending the other Mayo Campuses! My donor was an amazing anonymous donor. He blessed me with a kidney and a liver. I did not qualify for a living donor.
The MELD score is a measure used to determine the need for a liver transplant. It is used to determine how close a patient is to the top of the waiting list for a deceased donor organ. The benefit of a living donor is that the patient does not need to become extremely ill before transplant.

Here are links to Mayo Clinic information:
-Mayo Clinic Living Donor Toolkit
It covers both liver and kidney living donation. And includes information about: Becoming a living donor; What to expect as a donor; Financial information; Peer and social support; Getting started, and a Q and A.
https://connect.mayoclinic.org/blog/transplant/tab/resource-36/#Donor
-Living-donor liver transplant
https://www.mayoclinic.org/tests-procedures/living-donor-liver-transplant/pyc-20384846
Here are some discussions where other Connect members have shared about their own living liver donation experiences:
-Process of being a live liver donor
https://connect.mayoclinic.org/discussion/process-of-being-a-live-liver-donor/
Any double donors out there: liver and kidney?
https://connect.mayoclinic.org/discussion/double-donor/
Jason, As patient, I would suggest that you contact the Mayo Liver Transplant Department with your questions. Will you let us know what you learn?

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jul 27, 2022
In reply to @rose999 "The negative doesn’t play a part. MELD still plays a role but if she has bleeding..." + (show)
@rose999

The negative doesn’t play a part. MELD still plays a role but if she has bleeding varices and ascites or other factors that will come into play.

Jump to this post

@rose999, I had a deceased donor. I understand how the MELD score would not play a role for a living liver donation. But I guess I was not even thinking about the possible complications associated with ascites or bleeding varices. I had both before my transplant and they were closely monitored before my transplant from a deceased donor, however I was very critical with end stage liver failure by the time I was transplanted. Is this something that you have experienced?

-For anyone with questions about MELD score, this is infographic offers a great explanation:
Infographic: MELD scores for liver transplants
https://newsnetwork.mayoclinic.org/discussion/infographic-meld-scores-for-liver-transplants/

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1 reply
jason123 | @jason123 | Jul 27, 2022
In reply to @rose999 "The negative doesn’t play a part. MELD still plays a role but if she has bleeding..." + (show)
@rose999

The negative doesn’t play a part. MELD still plays a role but if she has bleeding varices and ascites or other factors that will come into play.

Jump to this post

Thanks for the info, Rose! No ascites or any other complexities, thankfully. I hadn't seen anything indicating that the Rh factors played a role in determining eligibility for donation (as long as both the recipient and donor were, for instance, both "A" or both "B", etc...). Thank you again!

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jason123 | @jason123 | Jul 27, 2022
In reply to @rosemarya "@rose999, I had a deceased donor. I understand how the MELD score would not play a..." + (show)
@rosemarya

@rose999, I had a deceased donor. I understand how the MELD score would not play a role for a living liver donation. But I guess I was not even thinking about the possible complications associated with ascites or bleeding varices. I had both before my transplant and they were closely monitored before my transplant from a deceased donor, however I was very critical with end stage liver failure by the time I was transplanted. Is this something that you have experienced?

-For anyone with questions about MELD score, this is infographic offers a great explanation:
Infographic: MELD scores for liver transplants
https://newsnetwork.mayoclinic.org/discussion/infographic-meld-scores-for-liver-transplants/

Jump to this post

Thank you, Rosemary!! Thankfully she doesn't present with ascites or any bleeding varices. She is medically stable and, according to her liver team here in Houston, is well-equipped to start the living donor transplant process. We've been to Rochester a few times back in 2019 when she was first diagnosed with her liver disease (PBC) and are so thankful for the Mayo doctors and staff.

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rjrlmn | @rjrlmn | Jan 13, 2023

Hi Jason! I hope this msg find you both well. I am a living liver donor, type A+ to A+, & to an immediate family member. I was told that was best case scenario but he was still prescribed the anti rejection pill, to take forever. Crazily, he did stop taking it after approx two years. Without my knowledge for six months. Thankfully, nothing happened. The transplant surgeons seemed pretty disappointed tho, understandably.

If I had any advice for recipients, please make sure they are willing & able to take the anti rejection pill. No allergies, no contradictions, etc., especially if no relation. Other than that, everything went great! Real great!! Better & easier than I could’ve ever imagined!

I live in MN & our surgery was at U of MN Transplant Center (Fairview). Surgery date was 4-5-2006.

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yaminaburleson | @yaminaburleson | Jan 14, 2023

Thank you for sharing this important information 🙏
Yamina Burleson

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