Saying the word “misdiagnosis” is not doctor-bashing

by Carolyn Thomas     @HeartSisters   
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Before my cardiac symptoms forced an early retirement, my entire adult career was spent in the field of public relations, in corporate, government and non-profit sectors. Which is to say I’ve had decades of firsthand experience speaking publicly on behalf of all kinds of people. I was paid to both defend the indefensible stupidity of certain industry presidents, and also to pitch engaging human interest stories to help promote good causes.
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But it was only when I started voluntarily speaking out on behalf of other female heart patients that I encountered any real backlash – and that came from the most unlikely sources.       .          .  Continue reading “Saying the word “misdiagnosis” is not doctor-bashing”

Women’s heart disease: an awareness campaign fail?

by Carolyn Thomas       @HeartSisters

I’ve been thinking a lot about awareness-raising lately because of a bombshell report  from the 2019 American Heart Association National Survey released this month.(1)  Among other completely demoralizing findings, this report found that women’s awareness of their most common heart attack risks and symptoms has significantly declined from a prior survey done 10 years earlier. How is that even possible?   .      .     .  Continue reading “Women’s heart disease: an awareness campaign fail?”

“Never been sick in my life” – so how could she have a stroke?

by Carolyn Thomas    @HeartSisters

“The doctor showed me an x-ray of my brain. He pointed to a small spot and told me, ‘That’s where the blood vessel burst in your brain!’ It was surreal.”

My heart sister Dina Piersawl (affectionately known to some of us as Dee Mad Scientist) had just celebrated her 41st birthday when she survived an ischemic stroke. A professional scientist – and a former athlete and personal trainer in Chicago who describes herself as “never been sick in my life” – Dina sure didn’t look or feel like any stereotypical stroke patient you might imagine. Continue reading ““Never been sick in my life” – so how could she have a stroke?”

Experiential learning: How patients go from novice to expert

by Carolyn Thomas    @HeartSisters

Unlike the professionals I know in the field of cardiology (the ones who decided they really wanted to spend many, many years of their lives studying All Things Cardiac), people living with heart disease are thrust unwillingly into an intensive overnight learning immersion program. We go from being utterly ignorant to, little by little, becoming increasingly familiar with even the most complex information on the subject of our own diagnosis. As one of my Heart Sisters readers told me she had astutely reminded her physician: “This is your career, but it’s my life.”

And this seems to be true no matter what the diagnosis. I know that, had I been diagnosed with lupus instead of heart disease, I’d be blogging and speaking and writing about lupus right now.
Continue reading “Experiential learning: How patients go from novice to expert”