Happy re-birthday!

[Guest guest]

To Greg - 8/1/1993!

From the archives of 2000:

Message: 17822

Subject: Hello all

Since I am new to the group I thought it might be helpful if I introduced

myself with a brief history of my journey with PSC.

In October 1993, I ran the Marine Corp. Marathon in Washington, DC (I have

been a distance runner all my life) and I noticed that I was unusaully tired

during and after this race. The treacherous " 20 mile " mark was really

difficult for me this time. I also noticed that my urnine after the race was

a very strange color of yellow. I really did not think much of these

symptoms, thinking that the fatigue was due to over racing and the yellow

urine was just a result of stressing myself too much

But about two weeks later, after I had run a 25 mile training run, my

daughter noticed that I looked like I had a suntan. Now, I am very fair

skinned and this was a novelty for my family. But on closer inspection, we

noticed that my eyes were " sun tanned " too. Of course, this was the result

of bile not draining from my liver properly and backing up my my

bloodstream.

After many months of looking, my PCP finally decided that I needed to have

my gall bladded removed and set me up with a surgeon. This surgeon decided

that he wanted an ERCP prior to surgery and set me up with a

gastroeterologist. The gastro guy did the ERCP, but when he tried to get

into my common bile duct, he found that there was not one. It was completely

gone and my liver had created its own make shift method of draining the bile

into my intestines. However, this make shift method was beginnning to break

down and that is why I was getting sick.

I eventaully ended up at Duke University MC and an English guy there, a Dr.

Cotton, diagnosed me with PSC. One hour later, I was with a transplant

surgeon, and he began to explain to me what I needed. A liver txp. What a

day that was. From being in at least the top 5% of the population health

wise, to needing a transplant or I would die.

I was put on the txp. list in January 1993 and got my liver on 8/1/93.

Things went along pretty well for about a year and a half, until I decided I

would run a half marathon (13 miles) and really give this liver a shake down

cruise. I ran the race and did very well afterwards. But about 1 month

later, my LFT's began to bounce around and I had some bouts of severe chills

and fever. After many months of trying to figure that out, one Friday

evening I went into acute abdominal stress and ended up in DUMC with a

volvulus (sp). Essetially, my intenstines had a kink in them. The surgeons

had to remove 3' of my large intestine and rework my liver hook up. What a

trip that was. I would rather do another transplant than do that again.

Since the volvulus surgery in 12/95, things have been going along well. My

Dr's at University of Pittsburg Medical Center tell me that they think my

PSC may be showing signs of returning (this does not always happen after

txp) hopefully my age (now 52) and the corresponding immune system weakening

may keep the PSC at bay. Of, course the Prograf and Rapamycin will also help

to keep the immune system from promoting the PSC full blast.

My labs do fluctuate some, usually the AST and ALT. But Albimum and Bili

seem to behave and those, along with the ALKP are the ones that really

concern me and my doc thinks the Albimum is very important. Of course, the

txp. docs have to be concerned with rejection too, so they watch all the

numbers and adjust the meds accordingly.

I hope this was not too long and I bored you to tears. Glad to find out

about this group and look forward to listening to and sharing experiences.

Greg

Liver txp. 8/1/93

PSC dx 1/93