My husband was supposed to be close to a transplant.
He had severe insomnia and I asked the dr to get labs on him. I suspected ammonia… he had his first HE in December and bad insomnia in the fall. His ammonia was 287 which dr was astonished at. He said- if anyone else had levels that high I would prepare them for death within weeks, but your liver is holding steady and not spiking with the other levels.
He told us that his current meld of 18 meant his liver is not showing how bad it is. He prepped us that he may get a liver that someone else gets called in for but doesn’t qualify if there testing is off that day… so we would be the back up. Which he said happens rarely.
Has anyone else faced this? It’s disheartening…
my husband feels lucky that he was chosen as a back up bc it will give him a second shot at getting a liver until his marks higher.
They also told us he was within a 1-3 years for transplant almost two years ago…and they didn’t expect side effects…well, he now has ascites, varices and he. I know they cant guess how someone will do, but painting a rosey picture because he is so young didnt end up helping. It makes me nervous about how well they said he will do after the transplant.
Processing it all…