[deeno]

Hello Everyone,

Dad quit the Vidaza after the first round because he ended up in the hospital in bad shape. He had a bit of relief at home until he experienced stroke symptoms and learned that an earlier fall caused slow bleeding on the brain.

He is now stable and on the rehab floor to try to get use of his left side back. The neuro-surgeon said the blood would eventually slide away (?), and thankfully there was little brain damage! They are giving him a lot of platelets, keeping his numbers in the 30’s instead of his usual 15’s. And he got a Picc line to make transfusions easier.

Had another CT scan and dr said he is still bleeding but barely. And his MDS doc is concerned that platelet therapy is not working well. But he is making slight headway with PT.

I’m trying to find out how long it takes for the blood to leave the brain, and exactly how does that happen? Or can a MDS/AML patient even heal from brain bleed? I can’t seem to find any answers on the web, everything is geared toward stroke-clots or injury-heavy bleeds. Any info would be appreciated….

Ativan lists decreased blood platelets as a very rare side effect. Does anyone disagree? Dad keeps asking for it to control twitching limbs. He is scared, but I told him to look at the twitches as the brain trying to re-connect with his limbs – probably not medically true, but it sounds good!

Maria&Lola- My mom has promised to take all the help they offer her. She likes his case worker. I just hope he gets to come home….even if it is in a wheelchair……sounds safer actually.

Each episode becomes my Dad’s new reality. But I always remind him that it doesn’t take away the wonderful life he already had – and our family witnessed and shared his great life – in some ways MDS/AML has brought us even closer. My best to all!