As I'm now entering my 17th year since diagnosis just wondering how many of you out there who have had for similar length time or longer without transplant?
I know that my life has changed over the years and although the deterioration is slow I can recognise there are things I can't do now that I could do say a couple of years ago. I retired on ill health 5 years ago and I have a better quality of life now. I accept the things I can't do and concentrate on the things I can. I have a caring family that support me ,which must be hard as I appear outwardly well.
My future is uncertain but I'm entering a new phase in a positive frame of mind and would be interested to hear your stories