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It is a very heartbreaking experience to go through. Especially when aplastic anemia comes out of nowhere, has no discover-able "cause" and is so rare most people have never heard of it nor do they have any actual frame of reference for what it means. Even if they don't know the ins and outs, most people have a general understanding of "leukemia" and what it entails. Vast majority of people have no understanding of aplastic anemia - even a lot of doctors! I was explaining to my PCP yesterday what my mom's treatment and needs entail. (Not that I expect her to know, it's not her specialty - but it's rare enough that many doctors have probably only encountered it in passing when studying)
Thank you for the information about Dr. Young's team. I'm going to be keeping that in my back pocket as we go forward. While it's nice to see my mom's ANC be in a good range and be told it's a really good sign, my mom's hematologist is definitely not a "small victories" type. All or nothing. He seems to be ready to say it's been a failure overall. Having another opinion from an expert would be very valuable depending on how things go.
As of the last bloodwork done on Monday, my mother's creatinine is 1.8, eGFR 30, bilirubin 2.1. Maybe these aren't terrible? I know right after the ATG treatment the liver and kidney numbers were a mess, as we were advised they would be, but after a little while they were actually normal, and had been normal levels right up until the introduction of Exjade. For example, right before it was introduced, her creatinine was 1.0, eGFR 60. I appreciate you telling me what you had been advised from your doctor as my mother's team doesn't really bring this stuff up. Currently they are just giving occasional IV saline to bring the creatinine down.
I very much understand the constant worry and stress it brings. You just never know what is going to come up with every blood test. I do remember a doctor in the hospital saying that there are people with ITP or other disorders that have sub-10 platelets and just live a normal life that way.
Letting go of the fear is hard. It was hard enough when my father had leukemia and passed away. Then we got blindsided by this. It sucks. (yes, I have a therapist) Having other people to compare stories with helps a lot.
Take care of yourself, remember to eat delicious things and live a day at a time.
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