My diagnosis of MDS came on the very day of my 49th Birthday. I had been going to the YMCA and noticed that my heart rate was increasing even when I was decreasing my intensity. I was very tired and I thought I would get my 50 year physical a year early. I don't like going to the doctor and hadn't had a physical since I was about 40. I had the usual blood test the day before my Birthday and then I got the results. I had low blood counts for red cells, white cells, and platelets. Red cells fuel the rest of your body, white cells fight infection, and platelets clot your blood. I had many tests and a bone marrow biopsy (lots of fun) and the diagnosis was Myelodysplastic syndrome previously called pre-leukemia There are treatments for this disease, but at this time the only hope for a cure is a Stem Cell Transplant, also known as a bone marrow transplant.
I was put on Vidaza and had four treatments with the only result being dropping blood counts. I know it can take up to six treatments to show results but my immune system was at a very low level. I also need blood transfusions every two weeks. Blood transfusions raise your iron level which damages your organs. I have had about thirty transfusions of two units each time. I was advised by my doctor to get a stem cell transplant asap as I was young(?) healthy, and had no other medical conditions at this point.
I went to Chicago to Northwestern University Hospital this past Thursday where they took 15 tubes of blood. You would think someone with low blood levels wouldn't be drained like that. They also did a bone marrow biopsy again. I should get the results on Monday. If the disease stayed in the MDS diagnosis I could possibly get my transplant in six weeks. If it progressed to leukemia then I will get harsh Chemo to put it in remission before they can do a stem cell transplant. I am not going into detail on this, however, if anyone has questions just e mail me and ask.