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Thank you for the support. We got the call to come to the hospital last Wednesday as they did not think my mom would make it through the night. This was 3 days after hATG treatment completed. She can't walk, has to use a bed pan, was in a lot of pain, had multiple infections and heart was tacky. Then all of a sudden she started to stabilize. Still can't walk or use the bathroom and her blood numbers (hemoglobin, ANC, monocytes) have still not risen but we are only one week out of treatment. But everything else is stable. Actually had some doctors say if her numbers were better by this Monday, they would consider treatment a failure. Only a week after treatment??? Wait, what? Anyway, we talked to more docs and we have called bull on that. Given what we have seen on this forum and what the AA foundation says, we shouldn't expect movement for several weeks, correct? My question is this, have we likely hit the lowest point (the few days after treatment ends)? She is getting blood and platelets nearly every day and her infection appears to fe controlled by the 4 types of antibiotics she is on. Just trying to understand what we can expect from your experience.
There is no "normal" with AA. That much we have learned. Everyone is different and everyone responds to treatment differently. If anyone knows of a good AA doc in Florida, we would love to have their name so we can call for a consult. My mom is at Baptist Health in Jacksonville, Florida.
Thanks so much for the support.
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