I was diagnosed a year ago and was told I could not be treated owing to my lungs being bad. I was discharged from the hospital and put under my doctor to monitor my blood.
He was not happy as he was not told what he was monitoring me for. He wrote to the hospital and the letter came back and said the same information I had received except that the hospital would treat me when I get bad.
I have now gone past 50% haematocrit and as far as I am concerned it is bad and still they will not treat me.
Has anyone else had this experience?
Does anyone know of treatment that I could have that will not interfere with my lungs?