New - and so happy to have found a group

[Guest guest]

Hello all,

I found this group through someone on a forum at transplant

buddies. I went there because I was freaking out about being on the liver

transplant list.

My illness started out with high liver enzymes in the late

1990s, and in 2003 started getting intermittent high fevers. I've never had

really high biliruben or jaundice. But the AST, ALT, GGC levels go through the

roof, and I get these horrible infections.

In 2005 they figured out that my common bile duct had an

inch long stricture.

Before they figured out that my liver wasn't draining, the hospital staff

called me " the mystery woman, " and ran every test in the book. Then

they ran some kind of nuclear test – the material was supposed to go to

the liver, and then drain into the gall bladder and intestines – but it stayed

in the liver. They tried an ERCP and couldn’t get up the bile duct, so

they referred me to a surgeon.

The surgeon was just sure I had bile duct cancer. That's when

they did a Roux-en-Y. After he operated he said that I didn't have cancer, but

I did have an annular pancreas which might have caused the stricture squeezing

off my common bile duct, and that probably with the new duct he constructed, I

wouldn't have any more trouble.

Within 6 months I was having infections again, which I kept

at bay with antibiotics. Finally I got one really nasty infection in March of

this year. Went to the emergency room, and my AST was over 900. They

transferred me to the hospital where I had the surgery, and I saw the surgeon

again. He said I had PSC.

My interventional radiologist put in a biliary tube drain –

took him almost 4 hours because some of the spots he had to thread through were

about the size of a human hair. He said he thought I had SSC, and that the tube

would put me right. Both doctors said I should see a Hepatologist.

My hepatologist reviewed all the records and monitored my

enzyme levels. I had another infection when I was in Germany in September. Try

going to the hospital when you don't speak the same language as the nurses and

lab people. My enzymes had started going back up, and my hepatologist said it

was time to get on the list.

Because I'm dependent on the tube, I have a MELD of 20 even

with lower biliruben levels. But that's only for 3 months, and if I don't get a

liver before then, the new rules take effect and I go down to just the MELD

that the blood tests would indicate.

At the same time, I'm feeling worse - tireder and my brain

seems foggier. My upper abdomine feels " yucky. " Not to be indelicate,

but my poop is turning light in color, which indicates some serious drainage

issues. I've got an appt with my internist to see if I should have fresh blood

tests.

I'm also feeling sort of sorry for myself not to have my

husband around to help me through this. I no sooner started recovering from the

Roux-en-Y, when he started having respiratory symtoms. He died in Nov 2006 from

lung cancer. He's always been there through thick and thin, hip replacements

and other stuff. Now, even though I have good friends and some family around, I

have to go through this without Dave.

Thanks for listening…

Nita