Showing posts from April, 2010

T+582 The Slippery Slope

I was at the hospital for two clinics today, my usual transplant clinic and the endocrinology or hormone clinic to look at my thyroid problems. This meant that along with samples taken for research I had 14 phials of blood taken. ( As Hancock said, that's very nearly an armful.)
Things have been going well aside from the odd patch of GVHD on the skin so we are at last trying to taper my main anti-rejection drug ciclosporin. From 50mg morning and evening I am going down to 40mg, again morning and evening. This will mean using the liquid form as the capsules only come in 25mg as the smallest dose. This is a bit of a faff with syringes and it tastes horrible but I don't mind, this has been a long time coming so I am more than happy to put up with the minor inconvenience.
I saw my usual haematology consultant today and she told me this will be the last clinic with her as she is moving to another hospital out of the region. She has been really great and I've gotten on well with …

T + 572 Culture Vulture

All ticking along ok on the medical front at the moment I am pleased to say. My skin has the odd patch of GVHD but very mild and a couple of days of betnovate cream sees it off. At the moment I am trying to lay off treating the patches as they are pretty minor and not spreading or getting redder. I'm hoping the lack of attention will mean the GVHD gets bored and finally stops playing up. ( Yes I know it is not very scientific to characterise GVHD as a petulant toddler).
Meanwhile in the last couple of weeks or so I've had, for me at least, a veritable flurry of days out.
Here are the highlights.
Kick Ass
I saw this film at The Electric Cinema and was really impressed with it. I had only seen a couple of posters about it and wasn't really interested but Gareth was keen to go and I was so glad I went with him. It is probably one of the best films I have seen this year. Funny, clever, thought provoking and with an excellent cast, even with old Horse Face himself, Nicholas Cage. (…

T + 564 Having My Head Examined

I had my first trip to the transplant clinic in six weeks on 24th March and it was a fairly routine visit. My consultant decided to leave my ciclosporin as it was for the time being but when I return on 28th April she will look at starting to reduce the dose slowly. She said it could take as long as six months or even a year to get completely off it which was a bit longer than I was hoping but better slowly and effectively than too quick and I end up with a more serious outbreak of GVHD.
I had the second round of my childhood vaccinations after seeing the doc. My third and final round will be when I return on 28th April. That day will be a double clinic visit as I will also be seeing my endocrinologist to review my thyroid levels and maybe look at how I can reduce my hydrocortisone tablets and persuade by adrenal glands to take up the slack.
Overall I have been doing pretty well. My energy levels are good most days though mornings are often a bit of a struggle until the tablets have kic…