About 18 months ago I was diagnosed with Primary Sclerosing Cholangitis, a rare chronic liver disease. This you probably all know. You all also probably know that there is no treatment for it and that the ‘end point’ of it all is a liver transplant.
Dr Chapman, the lovely doctor who told me I have this – and specialises in this disease – showed me a lovely picture in November 2009 of my bile ducts and the distinctive ‘beading’ that was happening to them.
‘Not to worry,’ he said, ‘we won’t be talking about transplant for at least 10 years.’
Not too bad, I thought. I could cope with that.
Friday just gone I had another meeting with Dr Chapman – just over 18 months from when we first met – to have a chat about what has been going wrong recently with me. I’ve been suffering a ‘blip’ which would usually be sorted out with a stent or some dilation of the bile ducts where they had started to narrow.
I got to see another picture of my insides, but this time instead of a clear channel of white which indicates the bile ducts there was this thin line which completely disappeared in some places.
Pointing to this, Dr Chapman said, ‘We were hoping for a few locations we could go in and stretch. This isn’t the case with you, there’s narrowing everywhere. We’re looking at referring you for liver transplantation.’
So, yeah – I need a liver transplant.
This week I have a couple more pokings and proddings in Oxford and after that I will be referred up to Birmingham to be assessed for transplant and put on the waiting list for a transplant.
I don’t blame Dr Chapman for his initial 10 year estimate. I have read enough about PSC to know this is the mean case time from diagnosis to ‘end point’, but I have also read enough to know that this PSC is wildly unpredictable. Dr Chapman is a great doctor; I trust him completely. If he thinks it’s time for this, then it is.
So, I’m still not back at work, but I went in this morning to let them know what’s what. I decided to do this face to face as it’s not the easiest thing to tell someone over the phone. They were, as always, very understanding.
I explained that until the assessment is over I just need to stay at home and rest. After that, well… I guess that is up to what the transplant assessors decide.
My biggest worry at the moment is that I have gone from stable within the normal ranges for all my tests to ‘you need a transplant’ in about 7 weeks. If that level of degradation carries on, what will I be like in a month? Two months? I guess, at this point, the iller I am, the more likely I am to get a liver sooner… It’s just a waiting game now.