I'm need your help in making an important decision.
I have hepatitis B with delta-agent, cirrhosis class A. In January 2013 a 0.8cm tumor was found in the liver, AFP was 450. In May 2013 the tumor was 1.5 cm large, AFP 980, and HCC diagnosis was confirmed. On August 23rd I received RFA treatment, but AFP did not fall much, it is at 880 now. I was placed on the waiting list for liver transplantation, but the wait time is long, many months. The doctor offers a method called "domino transplant" - DLT. I can get a liver from a patient with FAP, Familial Amyloid Polyneuropathy. Wait time will be much shorter then. But I know that the recipients for this method are exposed to risk of FAP "de novo" after a few years. It scares me. I have a week to ponder and answer. But I'm not sure what I should do. Replacing a deadly disease for another no less deadly? And I lack the knowledge needed to judge the situation in the right way. Can you advise me? What do you think of DLT? How you assess the risk of FAP? Do I have to accept the offer?
Thank you for your expertise
How old are you? It has become well accepted now that the FAP can in fact start affecting neurological function in the recipient. In most cases its probably close to 10 years before it start happens but i have a patient in whom it started after 5-6. If there really is no other alternative to the domino transplant and you could fall of the list due to the HCC then I would unequivocally accept it.
Big thanks for your competent answer!
I am 60 years old and live in Gothenburg, Sweden. Sahlgrenska University Hospital offers Domino transplant for all patients over 60 years with HCC. The transplant is possible in a few weeks in this case. If I do not accept the DLT, I remain on the waiting list, but the wait is much longer, up to 9-12 months. I think it's better for me to wait a few more months, than to take the risk of developing another disease. I'm thinking of saying no and hoping for the best.
I would also like to ask about the MELD score. I know that patients with HCC get 22 points automatically when placed on the waiting list. I only got 12. Why? What could be the explanation for me getting so few points?
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