Quote:
Originally Posted by mola-tecta
Just offering an update. My mother is progressing well in rehab, pushing a little further every day. They will probably keep her through next week, hopefully. I want her to be at least somewhat close to where she was before she went into the hospital in terms of independence.
One thing I am not sure I ever mentioned was that at my mother's first clinic appointment after being hospitalized for ATG treatment, we met another patient there who had aplastic anemia. It was interesting, she had heard the nurse mention HLA-matched platelets to my mother and came to talk to us. (Is platelet refractoriness more common in AA than other blood disorders or cancer? Hmmm ) We exchanged phone numbers but didn't really follow up with each other any more.
However I was feeling kind of hopeless about things so I finally reached out and we had a nice conversation. I asked about who her hematologist was at the clinic and if they liked them or not. I also asked about what kind of treatment they got, including the supportive care side.
Turns out the hematologist is one that was also recommended to me by the AAMDSIF when I emailed them about more AA specialists in the area. He seems to be well liked. She got the same treatment at base that my mother did but she was not kept on steroids for 6+ months, nor was she kept on antimicrobials.
I spoke to my mother about this, urging her that this might be a good time to consider switching physicians. After all, her current hematologist seems to kind of be "done" with her. I don't know if he is just swamped with other patients, or if there is some kind of critical disconnect going on but he just doesn't seem as interested anymore and is a lot more rude. Maybe he considers my mother non-compliant just because she has had a great deal of trouble with side effects?
In any case, my mother said she would think on it but wasn't ready to try and change doctors, especially within the same practice. I know for her "not ready" means "this is frightening and I don't want to deal with it." I suppose she expects that there might be some kind of blowback due to switching doctors within a practice. I don't have any clue on that but there isn't much more I can do but hope she comes around.
I tried calling the main nurse for the hematologist to see if I could ask a few questions but she hasn't gotten back to me. Phrasing is difficult but I wanted to try and ask: first what his "protocol" is, especially with maintaining prophylactic antibiotics when someone is no longer neutropenic. (most research I've found advises no further prophylaxis is needed once ANC > 0.5 or 1. )
Second I wanted to ask, in the most neutral language I could muster, if she had any tips on how to better communicate things with the hematologist and his PA. Because right now the flow goes: my mom talks to the PA about issues > PA talks and writes notes and then steps out to speak with the doctor > doctor comes in and scolds my mother?? For what I assume is either thinking she is non-compliant or asking him to fix non-hematologic problems (when the problems themselves are caused by side effects of the medications he prescribes?)
It's driving me crazy that there seems to be some kind of disconnect here.
This... turned out a lot longer than I expected, there's just such a jumble of thoughts in my head but there's no action I can take to do anything about anything.
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That's the feeling I get: there is nothing I can do about anything. LOL
I am so happy for your mother in recovering from AA. Congratulations!
As far as changing doctors goes, I think it's about time for her to do so. Your mother should never be scolded by a doctor. WHAT????
My mother's hematologist is not good, either. She's not rude, but gives very little information. She did consult with Dr. Young about what treatment to give her if things don't improve (he recommended Campath).
My mother's neutrophils dropped down to 100 and then back up to 300-400. She was over 1000 for 5 months. Even last summer, she averaged 600-700. I don't know what is happening. No purpose of asking any more questions. I'd just like them at 500 or above, on average. The research says that averaging under 200 is when very dangerous infections *can* settle in.
There are two men I know who have severe benign neutropenia: one man's neutrophils have been averaging 300-400 for the past 6 years; the other has his neutrophils fluctuate between 0-400 for 7-8 years. Neither has gotten an infection. Hard to believe. One got a little infected sore on his lip, but that's it. Anyways, they went on to say that there is more to the immune system than just neutrophils. If other aspects of your immune system are working well, that does help. As we know, people can have what appears as a very normal immune system and die from an infection.
They told me that my mother averaging 300-500 just really increases her risk of bacterial infections that can be somewhat easily treated (urinary, skin, etc.). The longer you go with low neutrophils without an infection shows a stronger resistance of the body to getting infections.
It is what it is. I can't change anything. My mother is currently fine, except she is still transfusion-dependent with even lower neutrophils. I am still grateful. She is not worried about her condition. It is I who is. LOL.
Please take good care of yourself and your mother.