The steroids are not working as well as they might have been as the were started days late at too low a dose
I have been on max dose for 10 days - after two or three more they will have to reduce the dose as it can have adverse effects
Two other things are being used to calm down the attacking cells from my donor. This combination seems to have stabilised things, but no improvement. (Ie the nasty big weekly jab, and some antfungal treatment three times a week
My liver and other system were scanned to today - no apparent physical damage to any organs
I feel very well besides being tried for lack of sleep due to the steroids
Over the weekend the doctors tracked down a coupe of GVH leaders. They advise two things
1. a special T cell thing which is being couriered up from London to Plymouth for Wednesday morning. I go in tomorrow to expect to be an inpatient for a few days to have this treatment and be monitored
However
2. There is blood irradiation treatment which the all want me to get on. This may be available widely in a year, but there are only 4 centres where it is now
- Birmingham - the only guy that works it is away for 2 weeks
- Bristol - happy to help, but requires permissions and it will take a while - maybe two weeks
- Nottingham - not contacted
- Kings. My doctors rang Kings and talked to a fried who remembers me whe I was at his clinic several times. They have a machine, and are willing to use it on me this week if schedulable, and sort out paper work funding later.
So I may, instead of being admitted locally, be going down to London tomorrow after noon and admitted for both treatments (or later in the week) and they will take over from Plymouth
I should know whihc way by mid morning
Its all happeneing - quite exciting really. Bit of a logistics nightmare
Luckly one son and Rosalind will take it in turns to look after the house. We just about have the farm covered
My other son will put us up in London, and help down there.
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