My 71-year old mom was diagnosed last winter with MDS and is on 10 mg. Revlimid daily plus gives herself B12 injections daily. Her father, in his later years, also required B12 injections. Problem is, she has not shared any of this info with me - or her two siblings - even though promising my dad she would.
My dad has been the one to let me in on the diagnosis, but I'm sworn to secrecy, not even to tell anyone else in the family. Because I have my own set of blood disorders (suspected hemochromatosis due to enlarged red blood cells, very high hematocrit for a 49-year old female (18.5), abnormally high liver function enzymes and elevated anticardiolipin), and my mother (a former RN) knows about all my health issues, AND my two adult daughters also have the same blood disorders I do, I am floored that she has refused to share her diagnosis with me. I see it as negligent. My mom also has abnormally high liver enzymes. Anyway, I wanted to know if any of you MDS patients presented with abnormally shaped and/or enlarged red blood cells. What about high liver enzymes? I am far from anemic, as you can see by my numbers, but my own doctor has been perplexed about the high hematocrit and enlarged rbc's. The liver is throwing him off, as well. Can anyone help me? Thank you so much.