Who’s In Charge? You or Your Doctor?

babyshowerSunday was the first baby shower I’d been to since. . . well, let’s just say that my youngest kid turned 19 a few days ago. There were the mandatory sherbet-colored decorations; a watermelon fruit bowl designed to look like a sleeping infant (complete with pacifier); infused water; chattering ladies; a table piled high with gifts. Only one thing was missing: the guest of honor. For even as everyone arrived for the shower, she was already in labor. And, ever the obliging young woman, she delivered a healthy baby boy before the shower ended.

I’m assuming she had great care in the hospital. Most women who have babies do. But far from the cozy, wood-floored, prettily painted maternity suites lies the healthcare system the rest of us have to deal with. Like another young woman at the shower, 26-year-old Mary.

I happened to overhear her talking to someone else and caught the words “migraine,” and “doctor,” and “frustrated.” Manna to my ears. “What’s up?” I asked.

Turns out she’d been having horrific, daily migraines and vertigo for months. The urgent care doctor told her she was probably on her period. The primary care doctor gave her a prescription for migraine medication and sent her away (the medication, by the way, made the pain worse). After two months of waiting, she finally got in to see a vertigo specialist, who said there was nothing wrong with her ears and dismissed her.

By now Mary was barely able to work, scared to drive, and was having brief episodes where she blacked out.

Had she seen a neurologist, I asked? Had an MRI?

Nope, she said. The earliest her doctor said she could get an MRI was the end of March. It was just February 15. And no, no one had referred her to a neurologist. “I think my doctor just wants me to go away,” she said.

Keep in mind that Mary has pretty good insurance – which she was in danger of losing because she couldn’t work.

As you can imagine, that made me angry. Coincidentally, Mary had an appointment the next day with her primary care doctor. I wanted to go with her, but was heading out of town. So I did the next best thing: I sent her a list of questions to ask her doctor, educated her about the medication her doctor had prescribed (the one that wasn’t working), gave her the names of several medications designed to prevent migraines, and told her that if her doctor didn’t get her in to see a neurologist and order an MRI, she should go to the emergency room.

Just got a text from her. Her doctor admitted Mary’s issues are now “officially out of her range of knowledge,” and is arranging an emergency appointment with a neurologist and scheduling an MRI for next week. She also prescribed two new medications.

“What changed?” I texted back.

“I think swamping her in symptoms and questions threw her off.”

“You, my dear,” I texted back, “Are now a Patientzilla.”

I’ve written about Patientzillas before. . . and now I’m going a step beyond. I’m starting a new business to teach people how to be Patientzillas, and how to advocate for themselves in a byzantine health care system (or find someone who can). I want to go into businesses and teach employees how to ask questions and stand up for themselves in a still-paternalistic environment; how to find information on their own, partner with their doctor to work together on their health, and find quality, cost-effective care.

All of which, by the way, can save money.

There will be workshops, webinars, e-books, real books, blogs, and speaking engagements.

And you can help. If you have a minute, please take this brief survey. It will help immensely as I complete my business plan and launch my new company called, fittingly enough, Zilla Consultants. Why Zilla, you ask?

Because I want to turn patients into Patientzillas.

Questions? Comments? Email me.

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