A little background about me, I'm a 41 year old bloke, fairly active working in a very stressful and physically demanding environment, was diagnosed with ulcerative colitis and PSC back in 2003. No real dramas since diagnosis except a few colitis flare ups. Just recently however I became jaundiced. LFTs done which raised some concerns, since then I've been prodded and poked a fair bit, CT scans, ERCPs, lots of bloods, liver biopsy.
My gastro has been struggling to pin down what's going on. Cancer was mentioned, PSC worsening, Autoimmune Hepatitis. It still hasn't been labelled, AIH was the latest best bet and I was put on steroids to try and start treatment for this however after my latest visit to my gastro he isn't happy with the results and is weening me back off these.
He is now referring me to Kings and the main focus seems to be on a transplant. However I think the guys and girls at Kings will be making that decision.
Has been a LOT of waiting and thinking of the worst. As I said there still isn't a definitive diagnosis. Am hoping that once I get to Kings I'll start to get more answers. But for me this is the worst bit. The not knowing.
Am feeling pretty anxious about the possibility of needing a transplant. Lots of different emotions racing around. Trying to stay positive and strong for my other half, she is struggling coping too, feels like she is useless and not helping, in truth she is amazing and I'd be lost without her.
So anyway. The coming months, years are going to be interesting.