Primary Sclerosing Cholangitis (PSC) - Online Support Group

We are patients living with primary sclerosing cholangitis (PSC), here for you!

Went to see the doc yesterday.  Had a blood test last week and they missed the liver enzyme test (yeah, the only one that was really needed!).  So after chatting with the doc for a half hour, I got that done.  Results to follow next week.

 

The doc basically said that they are going to schedule an ERCP test probably in the next month or so to take a look.  I don't want LOOKS, I want results!  Nothing seems to keep right on happening.  After no suggestion from my doc I finally took an afternoon off work and got that blood test done last week.  This after 6 months of no call, 'Hey, we need you to go get your blood work done'.  Nothing.  They also informed me yesterday that I will likely be in line for a liver transplant in the future (no word on how long that will be).  I guess it depends on how things progress (or not).  Right now I am on no medication, and maybe 6-8 weeks ago I started getting jaundiced again.  Mostly in my eyes.  The more water I drink, the less it comes out.  Obviously very dark urine to accompany that. 

 

Docs kind of freaked me out with the transplant thing yesterday, even though it is a ways off.  Just seems like they don't know what the hell to do about anything, so they will just keep monitoring stats and eventually put me on 'THE LIST'.  Worries me since I am only 32, healthy with a family to support.  I have a lot of things I want to get done before things turn downhill.

 

 

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