No matter the health situation, it’s about getting the support to:

• Be heard.
• Get answers and plans right for your health.
• Understand how the system actually works or doesn’t
• Handle what comes up, for you or someone you love.

That’s my work. It came out of my own real-life experience.

In September 2018, my former husband went in for an elective knee replacement surgery. By then I’d spent many years working in healthcare communications. Voluntary health organizations. Advertising and consulting for the pharmaceutical industry across oncology, vaccines, mental health, and rare diseases. So, a lot of experience.

Before the surgery, I asked the right questions, especially around discharge to home—the same day. I was especially concerned that they had his full medication list. When I asked, the surgical coordinator confidently said, "Of course it's in his electronic medical record!"

We all know the adage “you don’t know what you don’t know.”

I made an assumption.  She was so confident. I thought it meant the information was confirmed doctor to doctor. I didn't know to ask who gave her that information on the medicines.

I hung up and breathed easy. Little did I know….

Here’s where it got borderline dangerous.

During Monday morning rush hour traffic, I stood on a New York City street corner, my phone pressed to my ear and a journal opened in my hand—writing and walking. I had the prescribing doctor on the line. “Write this down,” he said, and I could hear the alarm in his voice.

In the days after the surgery, my husband seemed really confused; something was off. The home health aides were concerned. This call to the prescribing doctor revealed what the discharge instruction sheet showed. The doses of all the medicines were wrong! For a week, the home care nurse following the discharge instructions was providing the wrong doses.

None of the doctors' offices had talked to each other. In the end, my husband had made mistakes in the information he gave the surgeons' team. I had made the call to confirm they had his information; I had done my due diligence (or so I thought) but with the wrong playbook in mind.

In the end, the only reason my former husband was safe was that between the home aides and me, we realized something was wrong and acted.

The knee was a success. The rest had been a near-fatal mess. And the person holding it together, me, with all my experience, was massively caught off guard by the incompetencies baked into the system.

What that period taught me is this. You can get the best healthcare in the world in this country if you can figure out how.

And figuring out how, even for someone with tons of experience like me, takes a level of watchfulness almost no one is set up to sustain. I came out of that time with a doctorate from the University of Firsthand Experience. And I knew I could not let what I had learned go to waste; it needed to be translated and shared.