15th September - 191 days post transplant

Well it is still a roller coaster ride and definitely not what I had in mind this far after the transplant. The issues are many but all seem to be tied in together.

My skin is drying out and becoming like leather and I have a rash on the legs. Two weeks ago I was referred to Dermatology as they thought it might be a drug reaction. They gave me a raft of creams which sort of worked but not that well. This Friday my consultant decided that it looked as if I had a variety of graft v host disease (GvHD). So now I have a complete new set of creams and a strict application regime for the next two weeks which really means I cannot leave the house. My day goes a bit like this:-

• 8.00 am tablets
• Shower with soap free special "soap"
• 9.00 am apply steroid cream to legs, arms and face - have lost eyebrows
• 10.00 am apply moisturising cream
• 1.00 pm apply moisturising cream
• 1.00 pm tablets
• 3.00 pm apply steroid cream
• 4.00 pm apply moisturising cream
• 6.00 pm apply moisturising cream
• 6.00 pm tablets
• 10.00 pm tablets

On top of this I have no saliva production so eating is now a big problem. This in itself means that I am loosing weight which I can not afford to do. By mid afternoon I am also feeling very tired. My specialist nurse told me that it will take at least two months to recover from my one month in intensive care. This was quite a helpful comment as it set a boundary.

Well let's see what happens over the next two weeks.