Day 12 update

I'm feeling much better now, so that seems to have been an isolated couple of incidents this morning. None of the doctors seemed too concerned. They have set my new discharge date as Thursday 19th. The blood test levels are moving slowly in the right direction and they are happy enough that this will continue.

I have just had a long education session from one of the transplant coordinators regarding the drugs regimen that I will be on when I leave. They are going to start getting me to self-medicate under supervision for these last couple of days in hospital so that they can check I'm doing it right. There are a whole load of different drugs and the dosage is going to change quite a lot over the next couple of months as things settle down.

I've also learnt about what precautions to take with choice of food, how to look after my wound, and what the implications are for travel. Pretty much everything can be summarised as "be sensible, remember your immune system is weak". There is no such thing as a banned food, but anything which is more likely to contain bacteria is best avoided, particularly for the first 6 months.

I am going to have to come back to the clinic initially every week, probably on a Thursday. Fortunately this will be a dual-purpose visit: firstly for normal post-transplant monitoring, and secondly for clinical-trial monitoring. As the clinical trial is paid for by the drug company this means I will be able to take taxis back and forward to the hospital each time and claim it back.

I also learned today that because I had Primary Sclerosing Cholangitis in my old liver, and therefore had a more complicated type of transplant than most people, it means that I'm doing even better relative to most as the average ex-PSC patient is in hospital for several days more than the other transplant patients. So comparing myself to the record-breaking 8-days post surgery discharge that one of the nurses told me about isn't quite accurate - I'd like to think I'm still a record-breaker in my own special way!