How it should be, almost

I had an appointment with my pulmonologist last week. Well, I thought I had an appointment. He's a doctor I really like whose office is really too far away. But, quick, name three doctors you've had that you loved? I currently work with two (my primary doctor and this pulmonologist) and I know how rare it is to love how they do their job to help me. I'm in charge and they're very bright, talented consultants who give me advice. That's how all health care should feel, right?

So I drove two hours to see this guy, got there and found they had me scheduled for an appointment at a different office across town. It was 4 pm, plus the doctor wasn't across town, he was there with me. It was just an inexplicable screw-up. While I sat in the waiting room for about an hour at least four people funneled through for this same doctor. It was an amazingly efficient place.

Within two hours of my showing up more or less unexpected, I'd talked with a respiratory therapist, a nurse practitioner, and my doctor, who stayed late to meet with me and never once acted like it was an imposition. I hadn't seen him in a year-and-a-half and I went mostly to make sure my trach and vent were still the appropriate pieces of technology to be counting on for air. This idea was prompted by the fact that my trach model has recently been redesigned and it never said so on the package, so some important design differences were first noticed while changing trachs. (!) And also because at least one person has died in the past year from a vent malfunction where this model I use automatically turned itself off without alarming. (!) I've got my own personal safeguards against that, but still.

Anyway. We talked about all that. I got some new medications to try, both for allergies and to manage lung secretions (a typical vent-user issue).

And then my doctor did something that explains why I adore him so. He showed me how to change a vent setting.

Now, I know how to turn the dials and all, and I do conscientiously change some settings as needed. But he showed me something new to try if I felt short of breath. Most medical professionals won't even discuss this type of thing -- this self-empowerment in the use of a highly complex medical machine. They write the prescription for the settings and want you to leave it alone. And if you're not going to follow their directions, they want to make sure no path of liability leads back to their door.

There's some basis for medical professionals not wanting you to use medical stuff willy-nilly, of course. Prescription vent settings exist for the some of the same reasons pharmacies are not bag-your-own types of stores. It takes knowledge to know exactly what drug or volume setting will be best for your health. (A bag-your-own pharmacy sounds kind of thrilling, doesn't it?)

But here's a difference for some of us in those two scenarios: When you take a prescribed drug and there's a bad side effect, you can just not take the next one and no one will show up to shove that pill in your mouth just because the prescription said that was the recommended treatment. In contrast, I've got a supply rep (he's also an LPN) who occasionally shows up to check my vent and forces it back to the prescription settings. He does this all the time, and I change them back as needed once he leaves. This is all so his butt is covered, though he could, alternatively, just document that I have changed the settings. I'm an adult with my wits about me.

No, he changes them to what I have decided doesn't work quite right for the moment (and something slightly different may work better later that same day or a few months from now). Then he lectures me on getting a prescription to reflect the change, or a sliding prescription, if possible. The supply rep did all this mere hours before I trekked to the doctor who showed me how to change the settings if I wanted to.

I did not ask the doctor for a new prescription. I don't want a new prescription. I want my prescription to reflect the doctor's educated opinion -- and I want that opinion documented in the prescription so other doctors who might see me in an emergency give it credit as a baseline prescription. And then I want the freedom to follow that or not.

I'm not reckless. And my doctor gives me credit for that. As he should.

About my new medications, though: They are nothing rare. And they cost over $700.

That is not how it should be.