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Liver transplant cancelled: Am I back to the top of the list?
I received a call to make my way to AZ Mayo Clinic. They said they had a potential liver for my Transplant. Before leaving I received a call that the liver was rejected for the transplant. My question is, does this mean I am at the top of the list. Is there a list? My meld score is 9. I have had an ablation for cancer in the liver. Thanks Rick
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Hi Rick,
I think you may be on the short list but will have to wait for a good match. Your transplant team will be able to give you some clarity. Have you had clear MRI’s since your ablation? I had an ablation too for the same reason and am currently off the list. Hoping to reach my five year mark without a transplant. Wishing you the best.
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2 ReactionsMy MRI’s are clear. Can I asked if you took yourself off the list. Did they take you off because your Mri’s were clear. Just curious if they will take me off the list with clear MRI’s. Rick
@rwilliams1152, I expanded the title of your discussion to reflect your question. That must've been a gut punch to be all ready and on your way for surgery to have it cancelled. Were you, in the meantime, able to ask your transplant team about your position on the list? Are you back on the top? What did you find out?
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1 ReactionSeems like there is no top. They do their best matching up liver with blood type, size and a few more criteria’s I don’t know of. Although I was a little disappointed of my transplant being cancelled, I always believe there is a reason for everything so I just take it with a grain of salt. Whoops no salt. Nice hearing from you, Rick
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6 ReactionsHi Rick. When I was added to the list early last year I was told re my relatively low meld and uncommon blood type it could. take months or even years. I was also told many folks get a "dry run" or a "false alarm" along the way.
It chatting with other Mayo liver transplant patients staying at the same hotel in Phx most had one. But all got a call not too long after that they had an actual liver and to come quickly. So just guessing from this small sample size (6) you may get a call in the next month or two. I don't know about the ablation part. I too had liver cancer, it had not resolved, but was told that was not factored into the meld score. With a low meld score and a clear MRI ?But I would have my go bag and caregiver ready to roll. Prayers up.
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2 ReactionsThat happened to me twice be patient my meld score was in the 30s I was near death again it will happen believe me you want the right one and not have to do this twice I hope it’s happens soon make patience your friend
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2 ReactionsWe discussed it with my doc at Mayo and decided taking me off the list was best for me with the understanding that if anything new came up it would not be difficult to put me back on the list.
Many times HCC liver cancer patients, like you and I, have functioning livers which yields a low MELD score. They should be applying the MILAN scoring system which specifically grades us as candidates.
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1 ReactionWelcome @ekatchur. I just read a bit about you in your profile. Your experiences with liver cancer treatments, specifically histotripsy will be appreciated. You may wish to join this discussion:
- Histotripsy: My experience https://connect.mayoclinic.org/discussion/histotripsy-3/
Ed, how long have you been on the wait list for a liver? How are you doing?