Itch, Sleep, Energy versus Normality

After more than a week of being out of hospital and feeling relatively well I'm getting a bit of an idea of what life will be like pre-transplant. Basically I'm slowly getting back to something normal apart from three important things.

1. The Itch. Mostly gets me at night. I was always a bit itchy, and never knew why. Turns out it was because of the PSC causing a build-up of bile-acids in the blood. According to my PSC email group, this doesn't necessarily improve as your jaundice goes, but there are some medications that I haven't tried yet.

2. The Sleep. A very mild form of encephalopathy - mild brain disfunction due to toxins. Some of this might be habit of not sleeping through the night, but mostly its the itch waking me up. Sleeping pills and herbal remedies are strictly banned as these can massively harm a weakened liver.

3. The Energy. Clearly related to sleeping, but also just a generalised feeling of weakness and tiredness that varies day to day unpredictably.

I think I can get the itching under more control with different medication. Hopefully this will help sleep and energy, but the sheer unpredictability of these two is going to be the major stumbling block to getting back to work. I'm not going to be much use if every 3rd day I call in sick due to being exhausted.

Yesterday night I managed to shock and depress my brother and his wife Kathy by going through all the survival statistics etc. of the transplant. General consensus is now that I would really do well to try and live without the transplant for as long as possible. This will let the technology improve, allow new drugs time to be used, and hopefully give more of a chance to improve the bloody awful transplant situation in this country.

Did you know that hundreds of people die in the UK every year due to lack of donors? Did you also know that last year a private members bill to make organ-donation an opt-out process instead of the current opt-in process failed due to lack of time. The reason? Too much time spent on stupid bloody fox hunting. Write to your MPs, and demand they reintroduce it. And please, please, please, sign up for organ donation (link is on the right hand side of this window near the top).

Right, nearly 4am, time to try and get back to sleep, again! Wish me luck...