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Primary Sclerosing Cholangitis (PSC) - Online Support Group

Wondering about the future


#1

For over two years, I have been a reader and not a writer on this Blog. Now I would love to hear from some of you! After a little over two years since my last stents were removed, and being mostly asymptomatic, I began experiencing symptoms again. After some concerns on a CT, i went in for an ERCP last week and the news was not what I had hoped. The left lobe is shrunken and atrophied and no way in through the ducts. The right lobe is significantly enlarged and a stent was put in the right bile ducts. I came home feeling no better than when I went in. No appetite, nausea, abdominal pain and extreme fatigue. I feel I am getting no direction on how I might feel better or even if I might be going to feel better. I feel I was so naive to feel that since I did not feel poorly that nothing horrible was going on, but it was!


#2

Still,

You highlighted an insidious nature of psc. Even though we can be asymptomatic, bad stuff can still be happening. Then it hits. Hard.

Let your doc know you are still having those symptoms.

Jeff


#3

My doctor has requested I come in every six months for blood testing - he said to plan on doing that the rest of my life. I agree with you it is hard - I feel fine most of the time and in fact most years I feel fine. I know mine is small duct PSC which is a little different. I thought for years and was misguided to think it was Autoimmune Hep and it would just go away - should have researched it more back then, but I was 21 years old and naive. So at 35 I didn’t think all the abdominal pain in my stomach, night sweats, nausea, and dark urine were even part of my liver stuff. It’s not an easy thing to be diagnosed with that is for sure! Keep your head up though and take it all day by day.


#4

Thank you all for responding! Sometimes a person feels so alone with this disease. I go in for a stent removal/replacement on the 20th They will give one more try in getting in the left side for only one reason and that is to get a better idea if there might be any cancer cells in the area that they were unable to sample.. I am an odd-duck PSCer in that I can be really ill and nothing shows in my blood tests.


#5

Still Stunned,

I was wondering if you might give us an update on how you are doing since this post back in March? Have you been put on the transplant list yet? I assume you are under the care of a hepatologist by now given your increased decline? Trust you and your family have a Merry Christmas. We will be thinking about you.

Mark

PSC 2011 / Liver Transplant 7-2015