NEH, I'm back, with clean teeth.
You are in a bad spot, or your fiance is in the bad situation and you are a helpless bystander to this drama.
My partner Mike was in the same shoes in the fall of 2010. Just change the dates and the situation MATCHES.
Including the cancer marker labs. They kept looking for the Heptocellular Carcinoma (HCC) to show up as it advertised itself for some time!
The point where they diverge is that Mike still had the attitude that he was just dying so why quit drinking? He felt his case was hopeless.
Well his GI doc gave him the runaround, was almost rude. Saw him every 3 months, put him on all the same meds and checked again the next time.
Mike was a slipping away from us.
For another purpose entirely, he was referred to a REAL hepatologist, and the story changed in ONE DAY.
The doc told him straight out...YOU WILL DIE IN THE NEXT 90 DAYS IF YOU DON'T QUIT DRINKING ALCOHOL. And for some reason, Mike DID. No longer did we hear the nonsense about
he was just dying anyway. He learned that dying of liver disease is a bad way to go.
They required 6 months of documented sobriety for the transplant programs, and Mike had to LIVE to get on a list. He kept to his program, took his meds, slept his life away, was hospitalized several times, got transfusions, blew up like a balloon, vomited almost every day, looked like a dead man walking...a yellow dead man.
When they realized he was serious about
his sobriety, they got him worked up at Jackson in Miami. BUT like your fiance, his MELD score dropped. He didn't feel much better BUT at 15 or 17, no liver transplant...just waiting and managing symptoms as best they could.
Then the best/worst news. That high cancer marker zoomed higher and they saw a tumor on CT scan. OH, NO, now he had cancer also.
There is good news and bad news in the cancer thing...it gives you extra MELD points. BUT it can get you disqualified if your tumor is greater than 5 cm...or the sum small tumors is greater than 5cm. And it may be a different story if the tumor invades the vessels.
Again, Mike was a lucky one. 2 cm. They found it at the end of Feb and he had his transplant May 1st...so he
was really "waiting" 2 months, when he KNEW his time was near.
In some cases they can treat the tumors to keep them small and still do the transplant.
But for Mike, it was the straw that brought the situation to a head.
Now, of course, he is a cancer survivor as well as a TX recipient...so they check him all the time. The next tumor (if there is a next time) isn't going to sneak up on him either!)
Good luck, hold on, and post often.
This group of patients and caregivers are very giving of their stories and suggestions.
PS: Change the title of your post to something that brings folks to your posting: Fiance has End Stage Liver Disease...we need some advice... or some such.
Post Edited By Moderator (hep93) : 5/8/2012 4:48:52 PM (GMT-6)