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Old Wed Dec 30, 2015, 09:14 AM
Marlene Marlene is offline
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Join Date: Oct 2006
Location: Springfield, VA
Posts: 1,406
John and his doctor set a transfusion threshold for both platelets and red cells. And unless he was experiencing problems like active bleeding or needing a procedure that was invasive he did not get platelets. Platelet transfusions don't always take. Some work better than others. Hives were John's biggest problems with platelets. And many times he didn't even get a bump from them. Even then, the bump didn't last very long.

His threshold after treatment was 10K and we dropped it to 8K. At 8K he did not have any bleeding. Some will go as low as 5K with Aplastic Anemia. We found that his own platelets, the few he had, worked just as well or even better than transfused platelets.

I would make sure your hematologist has your transfusion thresholds in your record so the other doctors can call the office to get more information about your situation if needed. Discuss it with the on-call doctor and let them know what level you and doctor have agreed upon. Every time we had to deal with ER doctors or any other specialist, they always contacted his hematologist before proceeding with any treatment. Sometimes I think they did it because they never had a SAA patient before and were a bit hesitant to treat without make sure first.

You may want to find out what your clotting times are. This is somewhat independent of the quantity of platelets. Platelets are one factor in the clotting process. John's clotting times were all normal even with 8K platelets. I used to mix him up some good old fashion Knox gelatin to drink. The original formula had clotting factors in it. Vitamin K1 supports clotting. I found that knowing his clotting times, eased my mind just a bit.
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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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