I've been up half the night itching and figured that writing my first post could be a good distraction.
I'm wondering about LFTs and how high they can get, particularly just before transplant?
My numbers have always been fairly high. I was diagnosed in 1999 at the age of 21 for PSC and later UC. Currently Bilirubin 90 (4.21US units), ALT 238, ALP1037, AST 250.
When I was initially diagnosed I was told transplant was required in next two years, and I was put on transplant list in 2000, stayed on list for 6 years with no serious complications from PSC besides pain and itch. I would get called for transplant, they'd take one look at me and send me home "I looked too well for transplant". After years of this I got the hint, doctors agreed I would go off list and start a family. I've always looked really bad on paper and in scans and biopsy results, but I don't "look" the part of a stage 3/4 liver cirrhosis patient. It's weird, when you're new to the system and told you need transplant to save your life all you can think of is to get on that list and get the transplant, but as time went on and I learnt more about transplantation, my new motto became "I'm gonna keep this liver as long as possible!"
Now I'm afraid that it may be list time again since I've had to go on leave from work, jaundice, fatigue, pain and itch are quite constant.
Leading up to transplant or transplant assessment what type of LFT numbers are common in PSCers, or are we all unique? I know that how you feel is more important that what the numbers tell us often. For instance, my worst pruritis isn't in synch with my worst LFT levels. I know there's some info on 5X increase indicates need for transplant for certain values, but if your albumin is not too off (like me) MELD scores are lower, also there is little talk of MELD scores here, I'm in Ontario.
Feedback is appreciated, and thanks for making the restless night a bit easier!