Happy re-birthday!

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To (and Danny) - 05/24/07!

From the archives of 2007:

From: On Behalf Of kmart11561

Sent: Sunday, October 07, 2007 6:23 AM

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