[PaulS]

OY

Before I had my transplant I was seeing a hematologist who was an expert in MDS - and is 2 hours from where I live. When we decided to try Vidaza she helped me find a local hematologist who would send me to an infusion center at a nearby hospital - During and after Vidaza, when needed transfusions, she would make the call and the local hematologist would tell the hospital what to do based on her input. When platelets came in lower than 40 the lab would notify the hospital who would notify the local doctor who, based on my MDS doctor would not order platelets - I don't think my platelets ever dropped below 20 during that period. I had the transplant in a big cancer hospital and the transplant doctor took over making most decisions, consulting with MDS doctor as needed. In the hospital they'd give me platelets when they dropped below 10 - which they did for several weeks (i think, time is fuzzy). After the transplant I've been given a couple of platelet transplants when they dropped below 20 (around 17) - but it was always a discussion and not every time. My guess is, if they dropped below 14 the transplant doctor would give me a transfusion - but that's in the context of being at the hospital for a visit - so what the heck - I don't think he'd treat it as an emergency at 14 unless I has having symptoms at that level -- but he might want to transfuse, in part, because he knows I'll be far away from the big hospital.

So -- getting any kind of infusion locally was much easier than traveling two hours and the local infusion center was great - but you probably need a doctor with admitting privileges at the local hospital with the infusion center to put in an order. Even my local hematologist was not especially familiar with MDS and his initial reaction was to transfuse when platelets dropped below 40 - he changed his mind after discussion with MDS doctor. Often I would talk to my MDS doctor and report back to local doctor what she wanted to do - and we'd do what she said.

Are you seeing a transplant specialist and a separate hematologist? - with the hematologist making the calls until you get the transplant? You should have a discussion with hematologist about what levels you should get transfusions at, and you should arrange with hematologist or local doctor to get them locally. I'd avoid the ER for such things if possible.

Platelets seem to go up and down by quite a bit - and transfusions have varying results but don't last too long - as you've discovered. Getting a transfusion now would not be unreasonable - but its a judgement call you and you're hematologist should make - and you should try and avoid doing it at the ER. If you don't get a transfusion - be careful not to cut yourself - definitely no rugby.

Interesting hearing about others experiences.

All the best,
Paul