Pam and Ron

[Guest guest]

Welcome to the group. It sounds like Ron has significant liver

damage/disease at this point. He's had PSC for at least 20 years dating from

when he was diagnosed with Gilbert's syndrome in 1982, at least. This is

similar to my and other cases where the correct diagnosis was difficult to

establish and late in coming. In my case it took 13 years. And without UC

and Psoriatic Arthritis starting it probably would have been longer in

coming to the correct diagnosis. I'm not sure why they didn't think of PSC

in Ron's case, or perhaps they did but previous ERCPs were normal. That is

what happened the first 7 times I had ERCPs, so I know that they were

looking for bile duct narrowing but didn't see any.

Now is the time to do some proactive things to make the years prior to tx

better and to make the tx easier to recover from. At this point Ron probably

has cirrhosis and portal hypertension. A diet change reducing or eliminating

animal protein may save him from developing hepatic encephalopathy, a

condition that often developes into confusion, coma and death. A vegetarian

diet may reduce the risk of this happening. Because he already has portal

hypertension working out with weights to maintain muscle mass is not good

idea as it may result in a variceal bleed. But walking, bike riding,

swimming to maintain muscle mass and cardiovascular fitness will help him go

through the tx surgery and recover faster afterwards. Fatigue is usually a

big problem with chronic liver disease, but geting regular exercise every

other day is still possible in most cases. Remember the higher your level of

fitness prior to being unable to work out or prior to surgery makes recovery

that much easier.

--

Aubrey

MD, PSC 1981, Psoriatic Arthritis 1986, UC 1991, LTX 10/5/98