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Old Thu Jul 22, 2021, 02:55 PM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
Matthew,

I'm sorry she's having such a difficult time. It's not easy dealing with this disease. I know she's glad to have you advocate for her though.

Platelet transfusions don't always boost counts. And many/most times don't last but a day or two. Normally, platelets live for only 10 days. There were many times John did not get a bump from his platelet transfusion. His most effective transfusion were at Hopkins when he was in the hospital because they were matching them specifically to him. They could get him to 50K but by the next day they'd be down dramatically.

If you think she normally holds at 16K on her own and she's not having any bleeding issues, you may want to discuss holding off on platelet transfusions and establish a new platelet transfusion threshold. I think 10-20K is pretty standard. John was able to hold at 8K without bleeding issues. He could go lower but we didn't want to set a transfusion threshold lower than 8K, just in case. You can also have them check her clotting times to see how quickly her blood clots.


Take care
__________________
Marlene, wife to John DX w/SAA April 2002, Stable partial remission; Treated with High Dose Cytoxan, Johns Hopkins, June 2002. Final phlebotomy 11/2016. As of July 2021 HGB 12.0, WBC 4.70/ANC 3.85, Plts 110K.
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