Matthew42,
I am glad you were able to get ahold of Dr. Young's team and got some things sorted out. This team will be the best for your mother to figure out the next steps going forward. It's great they already gave you some information and also agreed to review her case and all the records. It sounds like he will be able to take in all the relevant information and compare it to a lot of statistical data on AA recovery.
I'm hoping for the best for you and your mother. Maybe with the addition of advice from Dr. Young's team your mother's hematologist will be more comfortable continuing treatment as needed, especially if the plan will still be watching and waiting. I'm sorry you have to go through this, especially with feeling left out in the cold by her hematologist to find someone else.
Curious to know if Dr. Young's team only does this on referral or if they would be willing to review any patient with a relevant condition and history with bone marrow failure. Of course, I mean my mother
It would be really helpful to have another expert look over the information. Apparently my mother's hematologist did his fellowship at the NIH so I can't imagine he isn't familiar with Dr. Young.
I don't really have much of an update for my mother right now - doctor is trying to schedule a bone marrow biopsy for some time late in February. My mother is not terribly thrilled about it as it causes her a lot of anxiety. I think it is due to trauma from having seen my father have one without sufficient pre-medication. She requests to have the CT-guided BMB. The hope is to see if the marrow is recovering properly. The first time she had 20% cellularity. Of course I learned that cellularity doesn't always mean results in the peripheral blood.
Neutrophils are still staying between 1.7 and 2.5 for the past few weeks, which seems good. Platelets have still not seemed to dip below 20 between transfusions (although she is still getting them), but in months prior they could dip to under 10 between transfusions very often. Still needing RBC about once a month.
Still worried about the creatinine and eGFR as well as bilirubin rising again. The hematologist knocked down her cyclosporine to 75mg x 2 a day now. For some reason her trough levels had started getting higher again. I am wondering if it's because of the brand of cyclosporine being changed. She is prescribed cyclosporine modified and usually gets whatever generic is available at the pharmacy, but in the past month has been receiving brand-name Gengraf. Not sure if it makes any difference. Hopefully knocking it down again will help with some of the side effects.
Enough rambling, I'm still losing my mind.
Wishing you all the best right now and hopefully not terrible weather this coming week!