← Return to Long awaited Drug for myelofibrosis (MF) has been released

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@janetlen

I was diagnosed in July with MDS, but low Neutrophils counts and high blood cells volume indicate I have had this since 2020. I am encouraged by your longevity. I am not getting treatment yet since values are near normal. My wbc counts (all types) are rising from low to near normal which is weird. I hope it is an indication God loves me too 😃 Your wife knows you well! Did you ever consider a stem cell transplant? Overall, how has the quality of your life been with the treatments?

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Replies to "I was diagnosed in July with MDS, but low Neutrophils counts and high blood cells volume..."

I was not a candidate for stem cell when first diagnosed because of acute Kidney failure. By the time it was stabilized, they said I was too old. Quality of life is a tough one to answer. It can be what you make it. To some folks a good book, a cup of tea and some biscuits/cookies, a fire, maybe the occasional visit with friends is a High Quality life. I had to work on that and learn to accept a much more docile life style when I was in the doldrums. My life has always been fast paced. I worked in the Air Traffic system for the FAA, I was a Volunteer Fire fighter, I played local softball for 25 years, I was a Volunteer EMT and I was a competitor in action shooting events with some national titles under my belt. I have always been an outdoorsman and highly athletic, and always out in the shop building something.... so.... learning to slow down was tough. I put the motorcycles out to pasture and slowed down on dragging my travel trailer around the US. It was made clear to me that pushing myself when I didn't have enough oxygen to supply my heart and large muscles could be the end of me. THERFORE.... I made a lifestyle change and learned to pace myself during the times I was "running on empty". If you get into the right frame of mind, and don't just sit and feel sorry for yourself, you can have a good quality of life even when things are stormy.