Myelodysplasia Support Group

Well, my husband has the same problem. But he also has Myasthenia Gravis and A-Fib, so it's a wonder he gets any oxygen to the brain. Didn't even think about it being an effect of MDS. His last hemoglobin reading was 10.3. Has been running a bit better than previously.

Joe has A-Fib also but it is controlled by a pacemaker/defib. His "brain" has come back within the past month or so. But every time he forgets anything, I hit the panic button. His Hgb yesterday was 9.8, dropping like a brick from 11.6 2 weeks ago.

Hi. Obviously, when the Hgb is down, you couldn't have very good circulaton. And also you lack oxygen in your red blood cells when the Hgb is down. When I was diagnosed with MDS, my Hgb was 3.8. I couldn't think and could hardly walk across the room. I just laid all the time! I am transfusion dependent, so my Hgb is never very high or normal. I take Vidaza (chemo) 5 days on and 23 days off every month. Almost 2 weeks ago, on my first day of chemo, my Hgb was 9.6. I had just had 2 units of blood 4 days before. Four days later on my fifth day of chemo, I was 8.9 Hgb. Then 5 days later I went up!!! I was 9.2! Thy believe the Vidaza is starting to work. I'll be anxious to see what it is this Wednesday. (One week later) If I follow my usual pattern, I will have 2 units of blood by Friday. I'll let you know if you would like what happens. I told you all of this to give you some idea what happens to some patients with MDS. I think we all react differently. I will pray for Joe and you.

Thank you for the prayers but they are too late.for Joe. He passed away September 6. I hope that the Vidaza works for you.