My article “Through the Land of Oz: Self-Advocacy in Today’s Health Care System” was just published in the Society for Participatory Medicine’s e-Patient.net blog. It tells the story of my daughter Hilary’s heart valve repair surgery, and how she and I had to advocate for her treatment repeatedly with our HMO, and ultimately, with the State Board of Managed Health Care. Here’s an excerpt:

In January 2003, the cardiologist declared, “You should have your babies right away. Your heart valve will need replacement and it will be difficult, maybe impossible, to have kids after your operation. You have the choice of a pig valve or a mechanical valve.” My daughter, Hilary Engelman, was 23 years old, not married, and not yet thinking of having children. After the cardiologist’s pronouncement, we cried, not for the only time on this medical odyssey.

Hilary had been diagnosed at age seven with mitral valve prolapse (MVP). Since she had no symptoms, doctors relied on echocardiograms – sound waves that create a moving picture of the heart – to give an accurate, quick assessment of her overall heart function. Initially, they thought her condition was a benign heart murmur, the case for many people with prolapsed mitral valves. Three years after first diagnosis, though, a pediatric cardiologist at our health maintenance organization (HMO) said, “Your daughter’s MVP is not trivial and may require surgery someday.” With a hint of sadness in his voice, he pointed to a photograph of a vibrant-looking teenager on his bulletin board and added, “A patient of mine died from a leaky valve like hers.”

I had been a member of this HMO since before Hilary’s birth. Both my children were born there and we had received great care. I trusted them to follow her condition vigilantly, but this physician’s deadly comparison irritated me. It also got my attention and started us on our long journey toward understanding the exact nature of her heart valve problem and how to fix it. I did what any mother, any consumer can do – I stubbornly sought every piece of information available on MVP. For three days following that appointment I read and cried, cried and read, relieved to uncover facts but fearful for the future.

You can read the full article here.