An Interview on Women’s Heart Disease: Carolyn of Heart Sisters

Posted on February 13, 2017 by kerri
In 2012, I met Carolyn Thomas at MedicineX at Stanford University—my fellow Canadian ePatient at the conference that year, I remember her exclaiming “Kerri from the Prairies!” upon our first meeting! As I learned more about Carolyn’s story of being misdiagnosed when she was actually having a heart attack, I knew I wanted to help share her story—and I’m sorry it took me five years to do it! Thank you to Carolyn of Heart Sisters for joining us today!
Carolyn, professional photo on black background., wearing a black shirt and necklace. She is smiling slightly and has short brown hair and green eyes.Tell us a bit about yourself.
Most of my professional career has been in public relations across corporate, government and non-profit sectors (from Mercedes-Benz to the Victoria Hospice Society). And I’ve never had a job I didn’t love!  PR involves two of my favourite activities: public speaking and writing, both of which I do lots of these days based on my patient activism work in women’s heart health.  I had to take early retirement due to ongoing cardiac issues following my 2008 heart attack. I’m the mother of two grown kids, and the grandmother of the adorable Everly Rose, who lives just three blocks away so I get to play with her almost every day. I’m a former 20-year distance runner-turned-walker, a fair weather cyclist, and I have a semi-serious addiction to paper crafts.

What’s your story?
In 2008, I was misdiagnosed in mid-heart attack (“You’re in the right demographic for acid reflux!”) and sent home from the ER despite textbook “Hollywood Heart Attack” symptoms.  I felt so embarrassed because I’d just made a big fuss over nothing that I refused to return to the ER as my symptoms continued getting worse. After all, I knew it wasn’t my heart – because a man with the letters M.D. after his name had told me quite clearly that it wasn’t. I refused to go back to the ER until my symptoms became truly unbearable two full weeks later.  I was finally correctly diagnosed with a heart attack caused by a 95% blocked coronary artery. I also now live with a difficult cardiac condition called Inoperable Coronary Microvascular Disease. It was only when I was discharged from hospital that the huge reality hit home. I started researching women’s heart disease as if I were cramming for a cardiology midterm. That’s how I found out about (and applied to attend) a unique training program called the WomenHeart Science and Leadership Symposium For Women With Heart Disease at Mayo Clinic. I became the first Canadian ever accepted to attend this prestigious community educator training. What I learned at Mayo was shocking to me – and I knew I had to share what I’d learned with every woman I could get my hands on after I got back home.

What do you wish more people knew or understood about heart disease, especially in women, or what you have experienced?
I wish more of us knew that heart disease is women’s biggest health threat, killing six times more women each year than breast cancer does. In fact, heart disease kills more women annually than all forms of cancer combined. Yet far too many of us still continue to think of heart disease as only a man’s problem.

I wish more of us knew that, until very recently, most cardiac research over the past four decades has been done on (white, middle-aged) men, with women either excluded entirely or represented in statistically insignificant numbers. In fact, even the lab mice used in cardiovascular research labs are males, not females.  What this means is that many of the standard diagnostic tools and treatments that work pretty effectively in male heart patients are used because of research that ignored women.

I wish more of us knew that, as the 2016 American Heart Association’s first ever Scientific Statement on Women’s Heart Attacks reported, women heart patients are still being under-diagnosed and – even worse! – under-treated compared to our male counterparts. I don’t know what part of that report upset me the most: those appalling conclusions?  Or the fact that this was the first ever scientific statement about women’s heart attacks in the entire 92-year history of the AHA!!?  As my heart sister and heart attack survivor Laura Haywood Cory likes to say: “Sucks to be female. Better luck next life!” 

I wish more of us knew that we need to be our own best health advocates! Women are socialized to be nice, polite, quiet and not make a fuss. We know, for example, that even during a heart attack, women tend to engage in what doctors call “treatment-seeking delay behaviours”. This means that we come up with all kinds of more important things to do instead of seeking help right now – even when experiencing alarming cardiac symptoms! – than seeking the same kind of emergency help we would all demand if these symptoms were happening to anybody else close to us.

Do you wear medical ID jewelry?
YES I certainly DO wear a medical ID. I have written a blog article urging my readers to do the same. I believe every heart patient should be wearing medical ID. of some sort because that ID can speak for us when we’re unable to speak for ourselves.
I also like to remind my women’s heart health audience members that it’s highly likely if they collapse somewhere in public that the first person to come to their aid will NOT be a trained paramedic or a doctor, but a bystander who can at least call your In Case of Emergency phone number while waiting for the ambulance to arrive.

Has connecting online been a part of your patient journey? Why or why not–and if so, what has that looked like?
My first post-heart attack online connection was the WomenHeart online support community on Inspire. After being discharged from the CCU (the intensive care unit for heart patients), I had so many questions, and so few answers! I felt utterly overwhelmed and scared about what the heck had just happened to me. At the time, I didn’t know a single woman who had gone through what I’d just survived, but online, I found hundreds of other women like me, all living with heart disease. And I could go online and ask a question, 24/7 and somebody somewhere around the world would be awake to support me.  And an online support group is free and open 24/7. After “graduating” from my Mayo Clinic training five months after my heart attack, I started doing what I called my “Pinot & Prevention” free public presentations about what I’d just learned at Mayo about women’s heart health. Soon, I was doing my talks once a week, booked three months in advance. One reviewer described these popular talks as “part cardiology bootcamp, and part stand-up comedy!”  I launched my blog Heart Sisters – a few months later just to provide basic information to people and groups wanting to book one of my talks. It was just a static little 3-page website; I had no idea back then that it would grow to its current size (almost 700 articles about women’s heart health, and about 10 million views from 190 countries!)  And by now I’ve spoken to thousands of women about heart health including at medical and health conferences, community/service clubs and healthcare employee groups. I joined Twitter in 2009, where I’m still very active as @HeartSisters  I’m also thrilled that hundreds of cardiologists follow me on social media. I believe that such interest confirms this: I like evidence! I have a reputation for writing jargon-free, patient-friendly but science-based articles for heart patients based on what I learned at the Mayo Women’s Heart Clinic and from other respected experts. A few years ago, I was invited by the Vancouver Coastal Health Research Foundation to speak at an event about women’s heart health, where I was later described as a “knowledge translator”. I love that job description! And that’s just how I approach writing my blog articles, too.

What is a favourite moment that has come out of sharing your journey with others?
So many favourite moments!!! A few things I especially love: one is the number of my blog readers who respond to my Heart Sisters blog articles with some version of “I thought I was the only one feeling this way until I read your post!”  Those comments mean a lot to me…

The second was being invited to return to Mayo Clinic in 2015 – but this time to speak to a medical conference of cardiologists about my success in building an online patient community of women heart patients through my Heart Sisters blog! My first trip to Mayo was a life-changing experience for me, but the second trip seven years later was truly magical!

And of course there’s the fact that I was contacted by  the executive editor at Johns Hopkins University Press because she loved reading my blog, and asked if I’d be interested in doing a book based on my blog articles for them!  At first I said NO because of my ongoing cardiac issues, but she somehow convinced me – and that’s why I spent almost all of 2016 working on the book (in between visits with my grandbaby, of course!). Book launch is tentatively scheduled for early 2018.

Final thoughts, or anything you’d like to add?

Women, knowledge is power!  Do your homework. Become a world expert in your own body and in your own health issues. You know your body! You KNOW when something is just not right. And when troubling symptoms strike, instead of trying to minimize them, ask yourself what you’d do if these symptoms were happening to your mum, or your sister, or your daughter or somebody else you care about?  And then do it!
Please take the time to check out Carolyn’s site, Heart Sisters, and specifically, familiarize yourself with the often missed, less-common symptoms of heart attack in women—you may just save someone’s life! You can connect with Carolyn on Twitter at @HeartSisters—I am sure she would LOVE to hear from you!

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