[Julie J]

At first all his counts went down and they took him off a week and restarted at 5mg every other day. They wanted to see if his platelets started to come back. He never got to the point of having a transfusion of platelets.
He had to go off for two weeks because of pneumonia and has only been back on 2 weeks so I am anxious to find out his counts. His platelets have dropped again.

A large part of having MDS is it is a chronic condition and a person is always having to deal with it. We feel like we are on a very short leash. If your Dad has been independent it is a big loss. It is a lot to learn when you get a disease you never heard of before. I go to all the appointments as it takes two of us to remember most of what we have been told.

I wish they could keep his RBC up in the 11s but he hovers around 9 and gets transfusions when it gets done close to 8. He also feels cold all the time.
We went to a forum about MDS and met several people who have had more than 200 transfusions. I don't know much about when to treat high ferritin. We may have to find out. Julie