[GoodDay5150]

Hi Terry, we are all very sorry for your loss. I have many posts here concerning my disease, diagnosis, treatments, transplant, etc. You can just search my user name. I have met 4-5 different dr's at seminar/ meetings for PNH patients, and they have all disagreed w/ my dr's and their decision to transplant me. Too risky, I did not have AA in addition to PNH, etc etc. All situations are different, and there was not much input from me regarding what I thought. I know that the dr's at the clinic I go to confer w/ others specialists elsewhere, but I was not a witness to any discussions between them. I also know that I was symptomatic for a long period of time before diagnosis and that my age at the time was a factor, bcse any type of recovery is usually easier for younger patients. I have been told that transplants and the pre treatment conditioning can cause more difficulties in older patients and that is obviously a factor in their decision making.
Obviously this makes no difference in the unfortunate outcome of some patients w/ bone marrow failure diseases, so I consider myself very fortunate.


Mario