‘It may get worse before it gets better’ were the words that Prof Jamie used when discussing my recent explosion of Graft Versus Host Disease. My donor cells are attacking what is left of the old Chris and the Germans are winning. That is what is supposed to happen but the syptoms that I am currently experiencing are totally unexpected. After all, a few months ago I felt so well and now I feel so uncomfortable. My body doesn't feel my own.
Last week I reduced my steroid intake to just one taken four times daily. Some of my tablets need to be taken one hour before food, others with food and some one hour after food. Obviously I do miss some, otherwise I would be permanently eating whilst holding a stopwatch. I am now not sure if it is the steroids that has put the extra weight on me or the increased food intake. I suspect the steroids!
It is the reduction of steroid that makes the GvHD worse. My skin is sore, my mouth hurts, I feel bloated, my eyes vary from either being dry or extremely watery and my close vision is often blurred. But, as Jamie says, it may get worse before it gets better!
However, how can I complain about the treatment that I have been given, without which I would probably not be here today. Everything is a means to an end!
I have now been referred to St Thomas's and Guys for these new problems, I remain at Barts for my normal problems, I visit the Royal London for my mouth problem, St Margaret's in Epping for other skin problems and another hospital in Bishops Stortford for another problem. It's another problem finding where to go when I arrive at these different places. But, whatever the problem, everything just becomes what is now normal for me. This is my life for the foreseeable future. I don't know any different.
Normal life is just full of problems but the secret is not to worry about too much!
‘It may get worse before it gets better’ were the words that Prof Jamie used when discussing my recent explosion of Graft Versus Host Disease. My donor cells are attacking what is left of the old Chris and the Germans are winning. That is what is supposed to happen but the syptoms that I am currently experiencing are totally unexpected. After all, a few months ago I felt so well and now I feel so uncomfortable. My body doesn't feel my own.
Last week I reduced my steroid intake to just one taken four times daily. Some of my tablets need to be taken one hour before food, others with food and some one hour after food. Obviously I do miss some, otherwise I would be permanently eating whilst holding a stopwatch. I am now not sure if it is the steroids that has put the extra weight on me or the increased food intake. I suspect the steroids!
It is the reduction of steroid that makes the GvHD worse. My skin is sore, my mouth hurts, I feel bloated, my eyes vary from either being dry or extremely watery and my close vision is often blurred. But, as Jamie says, it may get worse before it gets better!
However, how can I complain about the treatment that I have been given, without which I would probably not be here today. Everything is a means to an end!
I have now been referred to St Thomas's and Guys for these new problems, I remain at Barts for my normal problems, I visit the Royal London for my mouth problem, St Margaret's in Epping for other skin problems and another hospital in Bishops Stortford for another problem. It's another problem finding where to go when I arrive at these different places. But, whatever the problem, everything just becomes what is now normal for me. This is my life for the foreseeable future. I don't know any different.
Normal life is just full of problems but the secret is not to worry about too much!
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