Sunday, August 29

Step One - Find A New Doctor

I have officially declared myself to be my husband's advocate. What that means exactly, I'm still working on, but for now it means helping him.

The most important help for the treatment of narcolepsy - or any other chronic illness - would be finding a good doctor. A doctor who not only understands the disease, but is willing, able, and eager to help you find treatment for it. My husband's current doctor is not that guy.

In the past two years since my husband's diagnosis, I can count the number of times he's had a conversation with his current doctor on one hand. Now he's visited the sleep center where the doctor is located dozens of times, but rarely actually gets to see the doctor. This is because the doctor is never there or too busy to see my husband during his scheduled appointments, so instead my husband talks to the nurse on duty. His appointments go something like this:

They weigh him, take his blood pressure, and ask, "So how have you been feeling?" My husband tells them any symptoms he's been experiencing - or he doesn't. Either way, the result is the same. He gets his new prescription and leaves. Even when he tells them that things aren't going so great - which they often aren't - the visits are very, very brief. Even when my husband repeatedly asked to have the pressure on his CPAP machine adjusted - he was waking up gasping at night, even with his mask in use - they never called back, never returned messages, and of course we never heard from the doctor himself. This led to the night my husband could've died. They always mailed out his prescriptions late. Despite reminder phone calls from us a week in advance, the prescription would inevitably arrive 2 -3 days after my husband had already run out of his medicine. This led to an ugly cycle of sudden withdrawal which wreaked havoc on his mental/emotional state.

Now I'm sure you understand Step One: find a new doctor.

My husband has an appointment with our family doctor in a couple of days. I'm going with him. I've made a list of things to discuss with the doctor, including the fact that the specialist we're seeing isn't doing anything special. He's not even doing anything helpful. Hopefully our family doc will be able to recommend someone else.

Someone who cares.


  1. This is absolutely essential! I often wonder why people don't shop doctors more often than they do for the very good reason that the care they are getting is lousy.

    You hear about doctor shopping to get drugs or the best boob job and it creates a stigma, I guess. But me...I will switch doctors in a heartbeat if I feel the least bit under cared for.

  2. I've learned that too, over the years. In fact, we should interview potential doctors before actually handing ourselves over to them. They'll be working for us!

  3. Does anyone know of GOOD doctor for narcolepsy? Or how to find one? Ohio region would be great, but would be willing to travel if they could help. Had since high school and on 3rd doctor.