Quote:
Originally Posted by Hopeful
Hi Matthew42,
I just read some of your other posts. It is a waiting game at this point, which is never easy. It's good that your mom is seeing some improvements in her counts. If she is no longer taking the drugs that may have damaged her marrow and if she is recovered from COVID, then hopefully time and rest will allow her marrow to heal, and you will see incremental improvements in the coming weeks/months. Did she get convalescent plasma to fight her COVID? This seems like human-ATG to me.
I remember that only one blood line would improve at a time for me, and very slowly. I also remember a bump in my HGB right after ATG that quickly went back down. I remember having the talk at 3 months. I remember feeling stronger after ATG, even though it took awhile for this to be seen in my counts. Keep the faith and stay positive!
I think you can request fresh RBCs. This may help extend the length of time between transfusions. As you know, after ~20 bags of blood, iron overload is a concern.
Is your mom off of platelet transfusions? Is her platelet count holding, even if it is low?
Wishing you both well!
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I really do you appreciate your taking the time to give help. You're very helpful, Hopeful. As you know, you can't just talk about this disease with anyone, as it's so rare.
Maybe I wasn't being clear, but the reason my mother's hematologist is considering a second ATG instead of waiting 9 months or more is because she wants her off RBC transfusions because of iron overload, and just off of blood in general. Why? Well, her age, as I said, no matter if she's in good health or not. If she were much younger, she would be less concerned about letting her "wait it out" as long as possible. That's all. Of course, my mother can say no, and wait it out, and the doctor would accept that. We're going to wait another 2-3 months and see what happens.
Her platelets usually are at 12 or 14 seven days after one platelet transfusion. She used to be 8 or below. So, there is a tiny bit of an improvement on that front, I suppose.
Yes, she is off those medications, thank god. You want to know what they are? Naproxen and Restoril. Hematologists believe that they both contributed to her aplastic anemia, unfortunately. Both cause bone marrow failure. She abused Naproxen, but the her old doctor said 4 X 250mg was fine (1000 mg/day) for several years. Really??
My mother never had treatment for Covid-19 - she was left go. She only had a terrible sore throat and 2 weeks later: SAA, seriously. Unbelievable!
Wishing you great health.
Bye, bye.