One week down

Its a very odd process, this waiting. I get a little jumpy every time the phone goes, or every time I think my phone may have been out of hearing range, or just every time I think about the call! I must have dreamt every bizarre combination of events surrounding this bloody phonecall each night so far, but in the end I still don't know if I'm hours, days, weeks or even months away.

Its definitely time though. My eyes will start glowing if they go any more yellow, and the itching is getting increasingly severe - I actually wake up with aching fingers some times as I've been scratching so hard during my sleep.

Really its quite amazing that I was so well for the last 3 years since I was diagnosed and had my first blip. The consultant tells me that from my medical imaging (MRI, X-Ray, CT etc.) my liver looks among the worst of all his patients, and yet I've been among the healthiest. Considering that I've been able to do so much dancing, and move back in to full time teaching work as well, it's quite remarkable and I consider myself incredibly lucky.

Over summer I started showing signs of increasing bilirubin (the yellow jaundice pigment) and then right at the tail end of August I suddenly had severe pain and was admitted to the Royal Free Hospital (London's other major liver unit) where they dsicovered that a stent (tube) that had been placed in my bile duct 3 years ago had slipped and was impacting on my duodenum. After some morphine, a minor operation and a week in hospital I recovered but it definitely hastened the decline.

Rather scarily my consultant at Kings had to apologise that they should have apparently removed this stent after only one year in place, and I was all ready to transfer my care to the Royal Free. Fortunately though I was pointed to the survival statistics for liver transplants at all the UK centres and they are almost twice as good at Kings than the Royal Free, so I'm staying with treatment there. (if you're interested the data was at http://www.rcseng.ac.uk/surgical_research_units/docs/Liver%20Transplant%20Audit%20Report%202007.pdf - useful stuff from p22 onwards).

So here I am sitting and waiting for the call! Fortunately the second day I went back for my arterial blood gas test wasn't anything like as painful (they got it first go!) though I still have big bruises and aching all up my forearms from the first one.

I'm back to work tomorrow morning and not really looking forward to it - hard to concentrate on teaching when you know you're about to be whisked off for a major operation. Everyone of my friends and family have been so incredibly supportive, as has everyone who has already contacted me from work.

I just really, really, hope the call comes soon...