I was told about a doctor that was like the best they've known. And I ended up needing a new doctor because of an insurance change, so there you go. That was 3 months ago. So, he comes off as very reasonable and takes his time with you. But the reality has been more waiting around. And every 39 days I have another scary dip in my platelets while we're wasting time.
So, we finally get to second appointment, since nothing can get done without an appointment, perish the thought. So he's telling me his plans. Well, I'm glad to finally try cyclosporine, so I go with what he says. I see flaws in dosage and he's talking about trough tests, which I had not heard of, so yeah, in some ways it seemed like he knew what he was doing, so I didn't say anything. Unfortunately, nothing was laid out for other possible occurrences, such as platelets dropping quicker than usual. Who could predict, honestly? Anyway, when results are not right, he is adjusting off of the trough tests. Seemingly that's the only formula he cares about.
So he is willing to adjust, but not when it comes to me wanting to adjust. Its all chiseled in stone apparently in last appointment, and requires another discussion to go against anything he is doing. Any comments are ignored, and when I try to figure out what language he will respond to, again he says, wait for next appointment.
This relationship is always going to be frustrating to me... Am I asking too much? Do doctors always waste time by not listening to the patient without another consuming appointment? And even when there is a new appointment, is he going to be all powerful?
Cyclic thrombocytopenia is a very rare disorder. I feel I know my disorder better than someone else does. I have the time to do the math. The doctor is not a cyclic thrombocytopenia doctor. He is just guessing along with anyone. And he is not spending much time on this guessing game.
Should I find someone willing to change things the way I want to change things after a note on a portal? Or does this doctor not exist?
I don't know if this "formality" is insurance related, protocol related, or doctor selfishness related, but its pretty insane to me that time is not considered for a platelet bleeding disorder, when things could theoretically happen very quickly. "Oh, can't do that" with no good excuse why "can't do that". "What do you want me to do, prescribe without an appointment?" Is that so crazy? The doctor and I both knew we were going to go with cyclosporine, but no, had to wait for appointment. Insane! Must have to do with money, somehow. Doctor wants appointments... Flawed system? Its never going to work efficiently at this rate.
Is a tele-doctor actually the answer for me? No idea.
