Bloods OK, new meds have dropped things a bit.
Chimerism still 100%.
Still taking shed loads of pills, ciclosporin, acyclovir, penicillin, myfenax, budesonide, folic acid, omeprazole, zopliclone etc
I had about three weeks when I was free from mouth ulcers and thought I'd seen the last of them. It was during this period that I was contacted by Guy's Hospital dermatology dept with a view to being assessed for light therapy and, thinking that I was out of the woods I foolishly turned them down.
Then BAM less than a week later the ulcers were (are) back with a vengeance and worse than before. Fortunately Guy's were able to schedule me in at short notice, so on Tuesday of this week I hopped on a train up to London for my assessment.
I must say that they've got it all strapped down nice and tight in that unit - within 90 minutes I'd had blood tests, a consultation with Dr Childs, had my mouth photographed (so as to gauge progress) and been given a guided tour of the facility and procedure by the section head Nurse Sukran.
What's going to happen twice a fortnight over the next six months is that I will be hooked up to a machine which will take 1.5 litres of blood from one arm and run it through a centrifuge to separate out the white blood cells. The white blood cells will then be fed into a matrix where a set percentage of them will be exposed to ultra-violet light to kill them. The treated cells will then be recombined with the original blood and fed back into me through my other arm. I'm advised that there is between a 60-90% chance that this treatment will help resolve my GVHD and most especially the business with the ulcers - which are seriously starting to get on my tits.
There are some possible side effects but in comparison to the hassle that GVHD has given me I reckon that they are well worth chancing. I will have to avoid sunlight and wear sunglasses and sun block in daylight - but to be honest I can't wait to get started. It's been 10 months since my transplant and I still don't feel as if I'm anywhere near recovery. Whilst I appreciate that I will never be the person I was before the transplant I'm also pretty damn sure that I don't want the way I am now to be my new normal.
I will update as things progress.
