Just an update:
My mother is doing better. She is in rehab for brain bleed caused by low platelets a few weeks ago (she fell and hit her head).
They have her discitis infection under control caused by a bone marrow biopsy. The antibiotic may be lowering her hemoglobin and platelets, but it will only be for a few weeks. She has had to get a few more transfusions because of it.
Everything else is fine.
Her neutrophils are now averaging 1000-1500 (past 6 days), which is way better than before, where she was averaging 500. She has never been anywhere near 1000 since she was diagnosed. Her lymphocytes have come way down, too.
We asked her hematologist about her neutrophils staying up so high, and she said that was a good sign. She's 5 months post-ATG. She said that sometimes ATG doesn't kick in until after 6 months in some people (very slow responders). There have been people where it's taken almost 9 months or more to get off RBC and platelets transfusions after horse ATG. That's hard to believe, but that is what they say.
She has a small PNH clone, which is one of the greatest indicators that she will respond to IST therapy. We are keeping our fingers crossed. You never know with this disease.
I wish you all good health and happiness.
