Thought it was about time I did an update here as word got back to me that a former colleague thought I might have popped my clogs as things had gone so quiet.
Truth to tell apart from managing to kick the use of the Zopiclone sleeping tablets, I haven't really made very good progress with my health since I last blogged. I worked out that since the beginning of this year I have spent just under a third of my time as a hospital in-patient and a quarter of the remaining time either receiving photo-pheresis or attending blood tests or consultations - all the while still taking a shitload of immuno-supressant medication every day.
The upshot of all this treatment is that I still have GVHD mouth ulcers, have still not managed to rid myself of Cyto Megalo Virus on a long term basis and have now developed GVHD in my eyes which means they are incredibly sensitive to light and resemble a couple of rissoles in the snow - I wear sunglasses most of the time even on overcast days and look like a complete twat pushing a trolley around Sainburys in 3 layers of clothing a scarf and sunnies even on a warm spring day. My eyesight is due to be checked out as it is deteriorating and things that I know are straight lines now appear as wobbly when viewed solely through my left eye - add to this high blood pressure caused by my meds, constant cough and cold and breathlessness on anything other than a level plane and I'm a bit fucked up and shot away at the moment. So Kings College are scheduling a day of tests to check me out.
I'm told that GVHD eventually burns itself out, my photo-pheresis course has now been extended until September, they would usually have expected some kind of improvement from a patient in my position by now, but it seems my T-cells may be proving unusually resistant. Once the GVHD starts to show some improvement then the immuno-supressants can be reduced, which will allow my immune system to start working again thus allowing me to fight off further infections and maybe deal with the ones I'm carrying.
Probably the most frustrating thing about my condition is the feeling of weakness and not being able to do much. Prior to the transplant I was physically pretty fit and strong and happy with the way I looked - now not so much. Steroids have given me the jelly bean shaped face and any muscle I had on my body has atrophied and although I have managed to get my weight back up to 10st 4lbs, most of that is middle aged bloke gut. I can't even run to catch a train. I kind of had to laugh the other when I considered that my Dad dying from heart failure at the age I am now was the trigger for me to make major lifestyle changes a few years back and to get myself in shape. The big joke is that physically I'm not in such a different condition to his at the same age - with the skinny chicken legs and the gut! Six years of work in the gym down the toilet.
I think I am innately an optimist though - because I know that the transplant from my sister has worked and saved my life and that all this other bollocks is just short term (well maybe medium term) hassle that should eventually resolve itself and given time I am confident that at some point in the future I will have a quality of life if not equalling, then at least approaching that which I enjoyed prior to the onset of the MDS in 2007.
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