PSC

[Guest guest]

I totally understand what your going through. I hated those ERCP's but the

truth of the

matter is that its the only way to diagnose this disease. Are you seeing Tom

Schiano at

Mount Sinai? I met with him for a second opinion after I was diagnosed. Great

guy, very

supportive. My PSC was diagnosed at North Shore Manhasset Hospital. I was

rejected for

a life insurance policy because of high liver enzymes thats why I went to get it

checked. I

went to a GI doc named Ira Goldman, he first gave me a Sono, then MRCP.

Although they

were both abnormal no one thought it was PSC. I then got an ERCP from

McKinley at North Shore Hospital (he was very good as well). I didn't believe

any of them

so I went searching all over Manhattan for second opinions. They all confirmed

PSC. My

wife set an appointment with Dr. Lindor at the Mayo Clinic in Rochester. I

didn't want to

go because I felt fine I was totally asymptomatic. I would cancel the

appointment and she

would just reschedule it. I finally went. He ran all the same test everyone

else did. First

MRCP. He then called me and said he saw something suspicious and would like to

do an

ERCP, he said he didn't think it was anything but wanted to do the ERCP to be on

the safe

side. When they do a ERCP they take brushings and biopsy samples from your bile

ducts.

At the time 10/06 everyone was doing regular histology to check for abnormal

cells

except Mayo. Lindor told me they were also testing the cells with an assay

called FISH

(much more sensitive then regular hist) and they were the only hospital doing

it. My FISH

came back positive for cholangiocarcinoma. I couldn't believe it! I'm 37 years

old and I

have cancer. I went back to the Mayo and started a Chemo and radiation protocol

that

again no one else had. I had a Liver TX on May 24th, my older brother Danny

donated half

his liver to me. We did the surgery at New York Presbyterian. You are correct

it is a long

wait for a Liver. I didn't want my brother to go through that surgery but he

wanted to do it

more then anything and the doctors at Columbia thought it was the best thing for

me so

they really pushed it. Both livers regenerate. Since the surgery I have played

Volleyball

and went surfing. Don't worry! Everything is going to be ok. I know your

scared, so was I.

The ERCP is not that bad, I had five or six of them. The Cancer is gone. Thats

my journey

with PSC. I hope I didn't scare you, not everyone with PSC gets cancer or even

needs a

liver transplant

[Guest guest]

>

Kmart11561~

Hi - I was curious how NY Presby was for transplant. I'm am

currently undergoing the transplant evaluation there and my Hep is

Dr. Brown. So far I've been impressed with everything. Were you

satisfied with the doctors and nursing there post tx? Thank you for

any input you may have.

Liz PSC '04 (CT)

> We did the surgery at New York Presbyterian. You are correct it

is a long

> wait for a Liver. I didn't want my brother to go through that

surgery but he wanted to do it

> more then anything and the doctors at Columbia thought it was the

best thing for me so

> they really pushed it. >

[Guest guest]

<<I hated those ERCP's but the truth of the

matter is that its the only way to diagnose this disease.>>

Actually PSC can be diagnosed through liver biopsy as well. My husband's was

diagnosed that way; albeit the local pathologists at the hospital in Marietta,

GA could not diagnose the results, so the biopsy tissue was sent to the Mayo

Clinic in Rochester. Fred's never had an ERCP - he was diagnosed in March of

2004.

Wife of Fred, PSC, 03/04, 03/06, and nausea-free for the first time in over a

week!