Guest guest Posted March 16, 2007 Report Share Posted March 16, 2007 All of the symptoms/procedures you note are classic for advanced PSC. I've had balloon dilatation and stenting of my CBD (common bile duct), for instance. External bile drainage is not unusual (http://patienteducation.upmc.com/Pdf/CholangBiliDrain.pdf). Many have had TIPS procedures (http://www.clevelandclinic.org/health/health-info/docs/1900/1930.asp?index=4721). Many of this group have had varices banded (GI bleeds). Dr. Aubrey had a very close call with a bleed just prior to his transplant. Hepatic encephalopathy (HE) is a common advanced stage symptom caused by ammonia buildup, sometimes successfully minimized by limiting protein intake. There's a pretty good article explaining in the files section at http://health.groups.yahoo.com/group//files/Research/. Unremitting fatigue is another classic symptom, as is pruritus (itching). The only thing that doesn't sound right is the use of Plavix (clopidogrel hydrogen sulphate), which appears to be contraindicated in cases of severely decreased liver function (http://www.netdoctor.co.uk/medicines/100002090.html). Could someone weigh in on that? Hang in there - you're in the right place. Feel free to ask questions. I highly recommend http://home.insightbb.com/~rhodesdavid/FAQ.htm as a starting point for information. Welcome! Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of kelley1scott 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 Quote Link to comment Share on other sites More sharing options...
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