At last, the doctors have confirmed that I can go home tomorrow. They showed me the various blood test levels which have indeed been fluctuating, but have been settling down markedly in the last couple of days. In particular they are pleased that my INR (a measure of the blood's ability to clot) has returned to normal.
So I will be taken back to my flat in Finchley tomorrow morning by ambulance where I will pick up a few fresh clothes and then get collected by Dad or Carole to take me to Watford for a little while. I have a couple of meetings in the hospital before that, one of these is about nutrition and the other is about the clinical trial, but that's all, and they should be finished fairly promptly.
A very mildly disappointing piece of news is that the doctors think I will probably needs to remain on a low level of steroids for the rest of my life, as well as the immunosuppression. They said this is fairly routine for people who used to have PSC, but it is a shame nevertheless. I'm going to do some research in to this and find out more about it, as if it is avoidable I would certainly like to.
So I will be going home with the following drugs:
Tacrolimus - the main immunosuppressant drug to prevent rejection. In a few weeks due to the clinical trial this may be mixed with/replaced by a newer drug called Everolimus.
Prednisolone - a strong steroid, also used to prevent rejection.
Nystatin - an antifungal to be used while I my immune system is being strongly suppressed.
Omeprazole - effectively a strong antacid and method of buffering my stomach against some of the nasty effects of the steroid.
Oxycontin - a strong opiate painkiller
Paracetamol - an additional background painkiller
The levels of all these drugs will be reduced gradually over the next 3-6 months. Eventually I will be only on much lower doses of the immunosuppressant and the steroid.
The main drawbacks to these drugs are that I will always be more at risk of catching bacteria, viruses and fungal illnesses (particularly in the first few months). I am also at a very significantly increased lifetime risk of skin cancer, and to a lesser extent other cancers.
However, sensible precautions and a healthy lifestyle should help counter this. Don't be surprised if I seem to have turned in to a bit of a healthy lifestyle obsessive - I'm having to work against a raised risk of cancer that is nearly equivalent to smoking!
My exercise regime seems to be working well. I have been making sure I get a shorter walk at least once an hour, and I'm doing more gentle stretching. In combination with slightly higher levels of painkiller I can already feel things ease ever so slightly.
Right, lunchtime calls. More food intake is another priority!
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