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On Friday I spent awhile on the phone with the nurse to try and answer some questions. She was no help in knowing what the protocols are for giving antimicrobials, other than she said it's not uncommon in the practice to be given them long-term. I don't know how to feel about it.
For my second question, I asked about communication issues. The answer was... somewhat not helpful for anything actionable but at least gave me a much better idea as to how the doctor and clinic are reacting to my mother when she complains about side effects or symptoms, and why they keep trying to pass it off to a PCP.
To them, a complaint of a symptom, even if it's not new, must be worked up as an entirely new problem and evaluated from scratch to make sure there is no new disease process going on. Other things must be ruled out before they assume it is due to a medication side effect, I guess. While this makes sense, I don't know if I fully agree with it, but it might be because I am around my mother a lot more and am way more familiar with her symptoms and complaints, so I know a lot of them aren't new, they have been there for many months, but have never gotten better or had something else exacerbate them.
As an example, I talked about my mother being in the hospital and getting a very thorough workup from GI for her stomach trouble. They did not find any evidence for a new acute disease process and it was their opinion that the potassium pills they had been giving her in the clinic were causing the problem. However, my mother has been having stomach issues for awhile now, and I think the potassium pills just exacerbated the problem into an uncontrolled one. In my logic, she was cleared of any new disease processes and therefore the symptoms are likely caused by the medications. The nurse didn't have anything to say on this or have any suggestions for help, that's just how they approach things. I suppose the best my mother could do would be to try and talk about the symptoms as closely related to the medications as possible.
I also called the main line for the heme/onc clinic and tried to give no details while simply asking if seeing another provider in the same clinic was possible. At first they told me no, because all of the providers in the clinic are supposed to be a collaborative practice where they all talk to each other about the cases. (Hmmm.) However I mentioned my mother having a rare non-malignant disease and that another provider was suggested to have more experience. The nurse on the phone somewhat acquiesced to this and that you can just call to ask to see a different provider for the next appointment.
Okay. But my mother is the problem here too - she does not want to deal with the potential anxieties and fallout for switching physicians in the same clinic. It doesn't matter how much I think it might help, or how much my mother is sick of dealing with her current hematologist, the idea of change is too frightening to her.
She would be more open to other clinics if there were any. I found there used to be a benign hematology section of the hematology clinic which moved to another building; I spent a lot of time trying to get ahold of them to talk to *someone* about if any clinicians there treat aplastic anemia. I've had no luck with it so far! Phone trees that give 0 options to actually speak to someone are garbage. They don't seem to actually have a front desk of any sort to speak to.
My last option is to see if the Cleveland Clinic would take on my mom as a sort of virtual patient - but I have no idea how that would work too if she needs to have bloodwork done.
My mother is supposed to come home from rehab this week. I am happy for her to be able to go home but there is a deep pit of anxiety inside that is telling me things are just going to get bad again unless something changes. And there isn't much I can do to force the changes, I just have to hope my mother will allow change to happen.
Please wish me luck, I'm sick with anxiety over all the possibilities and the fear that nothing is going to change and everything will happen all over again...
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