Re: PSC - wondering what's next

March 16, 2007

The scenario that Laurie speaks of below is identical to the one my

husband has just experienced, except for usage of the drug Plavix.

Given that 2 people have had the same experience, I expect others

have as well. Can someone give us an idea of what's next? Will these

devastating symptoms continue until a transplant is available? Is it

realistic to think that a return to work is possible? or should we

set our sights on simply increasing strength to handle the surgery

we hope for some day? My husband and I hold a positive attitiude but

would appreciate some indication of what is reasonable given the

seriousness of this disease. Right now it's like being without

sight and not knowing where you are...totally lost.

Thank you for being here.

Deborah

>

> I just wanted to see if any of the members post their personal

trials.

> I have sort glanced at some , but they are rather brief.

> For instance, I have had my husband to the ER with GI Bleeds, and

> transfusions and then the Doctors did a TIPS procedure on my

husband's

> liver. He now has a sort of a stent in his liver the size of a 3

inch

> garden hose. Since then we have to watch his protein intake

because the

> ammonia levels build up in his brain and he actually goes mentally

> violent.

> No one has ever explained any of this to us. The doctors have not

> prepared us for such things.We knew that we were dealing with a

liver

> disorder, but NO counseling was ever givin or offered. And now we

have

> to wait 6 six months to even get a shot at being listed for a

> transplant because he is on Plavix for the stent. We just can't

grasp

> how this all hit out of no where. Any one else going through such

> ordeals and trials? Oh yes, and he is very sleepy all the time.

> Thanks,

> Laurie

>

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