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-   -   AA for 25 yrs now Severe MDS (http://forums.marrowforums.org/showthread.php?t=2571)

ajaeger Wed Dec 7, 2011 11:51 PM

AA for 25 yrs now Severe MDS
 
My brother was diagnosed with Aplastic Anemia when he was 12. It was serious for some years, but when he was in his early 20s, it seemed to fade into the background (transfusions not needed as much, iron overload had lead to diabetes, but nothing else) Now at 37 he has been diagnosed with severe MDS. He went through 2 rounds of Vidaza. Both resulted in low counts and infections. He has been in the hospital for most of the past 3 months since the diagnosis - in for 7+ days for treatment and then whatever the aftermath has been. He checked himself out yesterday (did get oral ABX), against medical advice, because he didn't like the care (and he'd been there for most of 3 months...). He's at home now. He probably/may still have an abdominal infection and pneumonia. We're in Orlando. Today we're trying to get him in to the Moffitt Cancer Center in Tampa. I don't really know what I'm asking here... I know the outlook is not good since MDS is secondary to AA. He has NO immune system now and just a couple platelets swimming around. Trying to get him back in the hospital asap - the new one in Tampa, not the one in Orlando. It's hard to wrap my mind around him. Tests and radiology reports say he should be extremely sick. He doesn't look it and hasn't for weeks. Moving back home was great for his mental health (180 degree turn from yesterday), but his physical health looks so bad on paper. Just looking for hope, suggestions, anything. Thanks!

Julianna Thu Dec 8, 2011 01:37 AM

So sorry to hear of your dilema. I wish I could say something very wise that could help. Hang in there. Hope you find some really good Doctors in the new hospital who can make some postive moves for you.

Is a Bone Marrow Transplant an option for him? Seems like he really needs it now. Hope there is a perfect match in the wings waiting for you guys...

All the best,
Julie

Marlene Thu Dec 8, 2011 06:32 AM

I think it's smart to get him to a better facility like Moffit. It's so important to be in place that understands AA/MDS. And at his age, transplant is an option.


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