[Matthew42]

Dear everyone,

I am sitting in here in tears tonight.

My mother developed (69 years-old) developed severe aplastic anemia two weeks after having Covid-19. She went undiagnosed for almost 3 months before ending up in the emergency room. 2 weeks after her emergency room visit, she was told by a very reputable hematologist that she has severe aplastic anemia. He was looking hard for MDS because of her age, but said that it was 100% aplastic anemia. She had 5% cellularity, or something like that. She never had a real low white blood cell count (average about 2.4 or something), and her neutrophils averaged around 400-500 (still very low, but not under 200).

So 12 weeks ago, my mother had hATG . She is taking cyclosporine (350 mg) and 150 mg of Promacta a day. My mother is in otherwise good health (no diabetes, heart problems, etc.). 8 weeks after ATG, my mother's hematologist says that neutrophils were up 600-800 and that was a really good sign. In the past 2 weeks, we've notice that her hemoglobin is not dropping near as fast. Even her platelets don't drop nearly as low (under 10) after 7-8 days.

^ I'm telling you this because we went to see her hematologist today for her 3-month appointment. Right from the start, she tells her that her treatment doesn't seem to be working because she is not transfusion-free. She said that most people are transfusion independent at 3 months for both blood and platelets. She says that they will need to do a biopsy of her bone marrow to check for cellularity levels in a few weeks. If this is still low, then she will probably have to have Rabbit ATG about a month afterwards.

We were all under the impression that it could take up to 6 months or more to become transfusion independent. The hematologist told us 3-6 months, initially. And now she acts like she should be all fine and dandy at 12 weeks post-ATG. My mother started to cry. And then, my dad said, "What if the rabbit ATG doesn't work?" The hematologist replied, "Then, you do a BMT, which, at 69, is highly risky".
So, it was all bad news after just 12-weeks post-ATG.

I really don't know what to think at this point. Barely anyone has this disease, and so I have no choice but to find help online.

We never knew that 12 weeks was it. If you're not transfusion-free by that point, your hATG isn't going to work. We never knew that. Like I said, her neutrophils are averaging 700 and her hemoglobin has been dropping a lot more slowly than two weeks ago. Also, her platelets are a tiny bit better (she drops to 15 after 6-7 days instead of under 10).

My dad got a little bit upset and said that her hemoglobin isn't dropping as fast as before, and the hematologist said, "Well, you got a point there." ?????

I am so upset right now, I can barely breathe. My mother is crying a lot and thinking that she has no hope.

So, must you be transfusion independent at exactly 12 weeks? So, if her bone marrow biopsy shows low cellularity at 14 weeks, then it is a sure thing that ATG is not working?

By the way, my mother had genetic testing done, and she told her she thought she had acquired severe aplastic anemia, possibly brought on by Covid-19. Also, they're not sure if abusing naproxen over several years (1000 mg/day) may have helped bring it on, too. Over-the-counter naproxen is known to trigger aplastic anemia, or some kind of bone marrow failure.

I would appreciate if anyone on here could please let me know what the situation is here. I am clueless. I know zilch about this disease. I am sorry to bother you all, but I am in tears now.

I give you all my best wishes. May you all be happy and well.