Mediaplanet You suffered a myocardial infarction caused by a 99 percent blocked coronary artery. How has that experience shaped your advocacy for heart health?

Carolyn Thomas It’s fair to say I wouldn’t ever have become an advocate for women’s heart health had I not been sent home from the Emergency Department with a misdiagnosis of acid reflux — despite my textbook symptoms of chest pain, nausea, and pain down my left arm. I left the hospital that morning feeling completely embarrassed — because I’d just made a big fuss over nothing! Of course, my symptoms returned, over and over – but there was no way I was heading back to the hospital. After all, a man with the letters M.D. after his name had told me quite emphatically: “This is not your heart!” It was only much later, after finally returning to the Emergency Room because I could no longer bear those increasingly severe acid reflux symptoms that I was correctly diagnosed and treated for what doctors call the widowmaker heart attack.

"Another misconception is that if you’re young or thin or fit or have never smoked, you’re somehow immune to heart disease. Not true!"

Afterwards, I felt stunned and angry after I was discharged from the Coronary Intensive Care unit — but also curious about why women heart patients are so often under-diagnosed, as I was, compared to our male counterparts. I knew I had to do something to help other women avoid what I’d gone through. That same year, I applied — and became the first Canadian ever accepted — to attend the WomenHeart Science & Leadership training for women with heart disease at the world-famous Mayo Clinic in Rochester, MN. Graduating from this community advocacy training offered me an amazing and life-altering opportunity to take what I’d learned at Mayo about women’s heart disease, bring it back home to Victoria, B.C., and start spreading the word. By now, I’ve spoken to thousands of women, and a few men about heart health, including speaking to health care professionals both in their workplaces and at medical conferences. My presentations tend to be very lively, are always full with a waiting list, and have been described as part cardiology boot camp, and part stand-up comedy

MP There are a lot of misconceptions surrounding female heart attacks. What should women know to protect themselves?

CT A recent scientific statement on women’s heart attacks from the American Heart Association confirmed that, although chest pain is indeed our most common heart attack symptom, up to 40 percent of women experience no chest symptoms at all during their cardiac events. Even the word pain is important: many women would not describe their chest symptom as pain, but more often with words like full, heavy, burning, tight or pressure. And we can also exhibit what doctors call atypical heart attack symptoms affecting our neck, throat, jaw, back, shoulders, and one or both arms. Nausea, vomiting, cold sweats, crushing fatigue, light-headedness and even what’s known as “a sense of impending doom” are often reported by women in mid-heart attack. As Los Angeles cardiologist Dr. Noel Bairey Merz warns us, “Be wary of any symptoms above the waist. Heart trouble can feel like a crick in your neck, a pulled shoulder you might blame on carrying your heavy purse, even a pill stuck in your throat."

Another misconception is that if you’re young or thin or fit or have never smoked, you’re somehow immune to heart disease. Not true! What I like to tell my audiences and my blog readers now is this:

You know yourself. You know when something is just not right. Pay attention to that little voice warning you if these symptoms do not feel ‘normal’ to you. And then most importantly, ask yourself what you’d do if it were your daughter, or your mother, or your sister, or your friend experiencing the exact same troubling symptoms. If you would drop everything to seek medical help for them — do the same for yourself!”

 

MP You were originally misdiagnosed. Is this a common experience for women that suffer from heart attacks?

CT Not only are women more likely to be misdiagnosed in mid-heart attack compared to men, we are more likely to be under-treated even when appropriately diagnosed. As my friend Laura Haywood Cory, a spontaneous coronary artery heart attack survivor, likes to summarize the state of cardiac care for women:

“Suck to be female, better luck next life…”

A shocking study published in the New England Journal of Medicine found that, particularly in women in their 50s or younger, we are seven times more likely to be misdiagnosed in mid-heart attack compared to our male counterparts. This is partially due to cardiac diagnostic tests that have been designed, developed and researched on (white, middle-aged) men for the past four decades. Cardiac tests that can be very accurate in identifying cardiovascular disease in men may not work as well in women — which is what happened to me when all my cardiac tests first came back normal. Women can also present with more atypical heart attack symptoms, but remember that in my own case, I experienced classic Hollywood Heart Attack symptoms — and yet the E.R. physician took one look at me and said: “You’re in the right demographic for acid reflux!” before sending me home with instructions to see my GP for a prescription for antacid drugs.

MP Has your experience with heart attack affected your lifestyle? What changes, if any, have you had to make?

CT My heart attack changed virtually every part of my life. Because of ongoing cardiac issues that emerged during the first few months, I could no longer work. I had to leave my 30+ year public relations career on extended medical leave and apply for a long-term disability pension — a really demoralizing experience for me. My day-to-day life had to be carefully restructured to include rest and recuperation after every outing in order to manage the debilitating daily symptoms of coronary microvascular disease. I’d always been a person who exercised every day, and I’d been a distance runner for almost 20 years, so I actually had to adapt to exercising less than before after my own cardiac event. At Mayo Clinic, we learned that eating what’s known as the Mediterranean diet is considered cardioprotective: lots of veggies and fruit, very little red meat or processed foods, whole grains, fatty fish like salmon — and fun stuff like red wine and dark chocolate! Finally, I don’t think I really understood how much chronic daily stress I’d been living with for years. For example, I’d started normalizing the fact that for the year leading up to my heart attack, I’d gone into work almost every weekend, trying desperately to keep on top of my workload. We know now that this kind of low-grade stress is very damaging to the heart. I’ve really had to learn how to pace myself, that the word no is a complete sentence, and that bragging about how crazy-busy I am is not a sign of good health, but of a life that’s out of control.

MP How has your blog, HEART SISTERS, helped to spread awareness for cardiovascular health?

CT I started my website HEART SISTERS in 2009 as just a static little three page site with information on how to book my fun “Pinot & Prevention” presentations about women’s heart health, which I started doing after I returned home from my Mayo Clinic training. I slowly started writing general articles about what I’d learned at Mayo, and before I knew it, the site had exploded to over 600 articles, attracting six million views so far in 190 countries! And many of my blog posts have been republished internationally, including in the British Medical Journal. All of this is truly amazing to me!

I like to call my blog writing cardiac rehab for my brain. My public relations friends tease me that this is what happens when a PR person has a heart attack: we just keep on doing the only thing we know how to do, which is writing and speaking! I’m also thrilled by the hundreds of physicians who now follow my blog and my social media posts on Twitter (@HeartSisters)[SD5] ; I suspect these online relationships have happened because I’m a stickler for evidence-based medicine. While I like to write about the patient perspective, I also refer to scientific studies to support what I write.

I try very hard to make sure that what I do provide to readers is a unique resource that’s both useful and credible. Last year, the Vancouver Coastal Research Foundation described me as a knowledge translator after I spoke to a full house at one of their community education events about women’s heart health. I love that job description! I’ve taught myself how to read medical journals, and then how to reduce the key findings of published research into plain English for my readers. And speaking of plain English, I have to tell you that the blog post I’m most proud of is my patient-friendly, jargon-free glossary of hundreds of confusing cardiology terms. I’m also proud that HEART SISTERS has been awarded “Health On The Net” certification (a European-based watchdog organization that recommends my site as a source for trustworthy health care information online). There’s an awful lot of trash online, and it can be tough for patients to plough through the trash to find the truth!

MP With more awareness and education, could the effects of heart attacks in women be reduced?

CT I sure hope so! It’s why I keep doing what I’m doing! Most cardiologists believe that 80% of heart disease is actually preventable. Yet an interesting study of women over 40 from The Federation of Medical Women of Canada found that only about 10 percent of women are aware of all of their cardiac risk factors compared to 64 percent of women surveyed who knew exactly what they weighed in high school! Generally, Canadian women seem to have our overall priorities mixed up. If we wait until a heart attack happens, doctors may be able to stent or bypass or zap us back to life, but that procedure focuses only on what we call the specific “culprit” blockage that caused the heart attack in the first place. It won’t cure what caused that coronary artery damage, likely many years previously. But if we begin to make smart lifestyle changes, we’ll see major effects of those improvements throughout our whole bodies — which means we’ll feel better overall while very likely preventing that heart attack! It’s why cardiologist Dr. John Mandrola tells his patients: “You only have to exercise on the days you plan to eat!” I love that advice!

MP What advice would you give to women across Canada to stay heart healthy?

CT The standard advice includes what every one of us already knows. The basic lifestyle choices we all know we should embrace to stay heart healthy include: eat heart-smart foods, maintain a healthy weight, exercise regularly, quit smoking, get a good night’s sleep, manage your blood pressure/cholesterol/chronic stress.

But there’s something else that underlies every one of these choices, and that’s about women making themselves a priority in their own lives. Until that happens, we’ll always find something more important that needs doing (rather than taking time to exercise because that’s what our body really needs). When Mayo Clinic did a study that asked women to rank what’s most important in their lives, the results were telling:

  1. Family/children
  2. Work
  3. Home
  4. Pets (!)
  5. Husbands (right under the dog!)
  6. Myself

As long as we continue to put themselves last on their own priority lists, we’re just not going to make heart health important enough to pursue. You can take time now, or you’ll have to make time later!