Husband has PSC

[Guest guest]

Hi everyone! I used to be a member here a while back. I left and now am back.

My husband has PSC and was pretty much asymptomatic until last year. He had his

gallbladder removed in May '07. He developed an infection afterwards and ended

up with

fluid in his abdomen. He spent 5 days in the hospital recovering.

Things were going ok until a week ago. He just started seeing a new hepatologist

at IU

Med Center and he sent him for a bunch of tests. He had a colonoscopy a few

weeks ago

which showed some precancerous cells. His GI doctor is referring him to someone

at IU

and recommended a colectomy.

He also had an ERCP last Thursday. They cut one of the bile ducts and flushed

out some

stones. Last Friday evening he started passing blood whenever he'd go to the

bathroom. I

took him to the ER Saturday morning and we spent another 5 days in the hospital.

His

hemoglobin kept dropping so they gave him 2 units of blood. They did another

endoscopy

which showed there was no bleeding in the upper GI tract but the bile duct that

had been

cut was infected. They did another colonoscopy the next day thinking that was

where the

bleeding was coming from. There was no new blood but he does have internal

hemroids

that were inflamed.

Long story short, his hemoglobin finally stabilized but his white blood cells,

red blood

cells & platelets were all low. The doctors explained that it was because his

spleen is

enlarged (21 cm) which is apparently because his liver is not functioning well.

His blood

levels finally stabilized enough that they felt it was ok to send him home. Now

that he's up

walking around, his abdomen is again filling with fluid. They gave him Lasiks

before we

left the hospital yesterday but wouldn't send him home with a script because he

already

has low blood pressure.

We are aware that he is likely getting closer to being listed and although I'd

be lying if I

said it wasn't scary, we've made peace with it. He's only 33 and he told me the

other day

while lying in the hospital bed " I don't want the next few years of my life to

be like this. I'm

ready. " We see his hepatologist October 22 so we'll know the results of all of

his tests and

blood work then.

What are some questions we should be prepared to ask the doctor? I began keeping

a

journal so I can keep track of any new symptoms or really anything. One of his

nurses at

the hospital asked if I was in the medical field because I was asking a lot of

questions and

writing everything down. I told her no, just a concerned wife. I'm sure like

many of you, we

probably know as much, if not more about this disease than most medical

professionals.

Anyway, it's good to be among people who I know understand what we're going

through.

Bobbi