Happy re-birthday!

[Guest guest]

To Mark (and Terri!!) 10/24/07

From the archives of 2007:

Sent: Friday, December 07, 2007 2:46 PM

To:

Subject: Mark's Journey

I have not kept up with the site, but I have peeked in once and a

while as time has permitted.

Mark (my husband) began his journey in May of 2003. At that point,

he was diagnosed with stage III PSC. He was hospitalized frequently

in 2004 through 2006 with cholangitis and septcemia(blood

infections). I went to the 2006 PSC conference in Pittsburg and

learned much about the disease, progression, and possible

complications. Based on the conference Mark sought and obtained a

referral to be seen at Mayo Clinic.

He was first seen in heptology/internal medicine. Late in the summer

of 2006 he was referred to the transplant department as the doctors

at Mayo and U of MN kept looking for cancer that they could not pin

down. Based on a positive FISH test taken during and ERCP, Dr.

Gores of the transplant department determined that he also had

cholangiocarcinoma (bile duct cancer).

In October he began the protocol developed at Mayo. It has about a

75%ish survival rate after 3 years. During November and December he

had many, many tests and procedures. He had three weeks of

continuous chemotherapy through IV infusion along with twice daily

radiation. After this point he received oral chemotherapy as he

could tolerate. He was hospitalized or in the clinic for 90 or 120

days during November through January and 12 times in the year since.

He was listed last December at an elevated meld score based on the

protocol that Mayo has arranged with UNOS. The score increased every

6 months . When transplanted he was a 23 and it was expected that he

would probably wait another 3 to 6 months for a transplant.

He was offered a liver that was unsuitable for the first choice

candidate. Based on his health and history, the surgeon advised Mark

to accept. He was transplanted on October 24 and spent the next 32

days in the hospital. He had numerous complications. We watched many

people leave the hospital in a week and go home at about a month.

Mayo gave us permission to start commuting from the Twin Cities at

the beginning of the week. You can read more about our journey at

caringbridge.org at " thiher " .

It has been a long and difficult journey, but his health is

improving all the time. We were blessed that Mark received a liver.

We are also blessed that we came to the conference. I believe we

learned things there that changed the direction of Mark's care and

his outcome. We are grateful to PSC for that!