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Suppose you had a small tumor removed from your torso, and that two weeks later, your doctor told you, “Your disease is so aggressive, that you have only a few months to live.”
What would you do?
That’s what my doctor told me. In the summer of 2004, after being diagnosed with a rare form of lymphoma, I was told that I’d be dead before the new year. Chemotherapy might buy me an extra year or so, so I should begin treatments immediately.
But my intuition told me otherwise. I felt fine! I had no other symptoms. So I set out to decipher that disconnect.
I did a lot of research, questioned everything, broke a few rules, sought second and third opinions, got copies of my test results, and ultimately, with the help of a hematopathologist at the National Institutes of Health, proved the diagnosis was wrong. I had no cancer. To this day, I have never had any treatment.
It was a horrible, frightening, expensive experience.
Afterward, I decided to learn everything I could about the health care system that, instead of helping me improve my health, had tried to destroy me.
My research produced some sobering statistics. In a landmark 1999 report from the Institute of Medicine, between 44,000 and 99,000 Americans die annually from a misdiagnosis or medical error. Fast forward to 2011, and new reports from the journal Health Affairs stated that millions of patients are injured in hospitals alone.
I shudder when I realize how close I came to being one of those statistics. Clearly, if it could happen to me, it could happen to anyone. As I tapped in to my spiritual side, the “why me?” turned into “why not me?” I decided to become proactive. Revenge, in the form of empowering other patients and their advocates, could be sweet.
Thing is – I’m probably just like you. I have no medical training. I can’t stand the sight of blood. I barely passed high school biology. But I am a former teacher, spent twenty years as a marketing consultant, and throughout my life I have been a writer and a speaker.