How often do you really think about your heart? For me, it’s been quite a bit in the last few years. Research has drawn a connection between my rheumatoid arthritis (RA) and cardiovascular disease, showing that RA “is associated with a 48 percent increased risk of cardiovascular events … and a 50 percent higher incidence of cardiovascular disease related mortality … compared with the general population.”
By virtue of having RA, I’m at a heart disadvantage. Otherwise, I am a healthy weight for my height and age, I exercise five to six times per week, and I eat pretty well and don’t drink. (Have I mentioned my love of sleep?)
Recently, routine blood tests revealed my ratio of “bad” to “good” cholesterol was a little high. If I didn’t have RA, it wouldn’t be a concern, but because of my greater risk for cardiovascular complications, my doctor strongly urged me to take medication. Ugh – another drug. After initial denial and plans to control things by diet and exercise only, I did add the new medication to my prevention efforts.
My genes control a lot of my health – I can’t change that. But I can take control by taking my medication, eating well and exercising. My motivation is simple: I heart myself and I heart my life.
Heartfelt mission: Heart Sisters founder Carolyn Thomas
In 2018, Carolyn Thomas marked her 10th “heartiversary” – her tenth year post-heart attack. The then-58-year-old didn’t see her heart attack coming when, during a daily morning walk in her adopted hometown of Victoria, “a horrific central chest pain” sidelined her. She recalls sweating profusely, feeling nauseous, pain down her left arm, and leaning against a tree for 15 minutes until the symptoms eased enough to walk.
“My first thought was, ‘I’m glad that’s over,’” says Thomas.
“I wanted to believe the doctor – I didn’t fit my picture of someone who had a heart attack.”
However, the arm pain continued and, as she knew this was a heart attack symptom, she went to the hospital (where she happened also to work in public relations). After four hours in the emergency room (ER), a battery of heart tests came back normal. She was told it was likely an attack of acid reflux. “I wanted to believe the doctor – I didn’t fit my picture of someone who had a heart attack.”
Within 12 hours, the symptoms were back. However, embarrassed about already having made “a big fuss over nothing,” she made do with over-the-counter antacids.
During next two weeks, she experienced increasingly excruciating pain and symptoms, to the point of not being able to walk more than a metre or two. “Not making a fuss was a big theme,” says Thomas, who was determined not to ruin her mother’s upcoming 80th birthday party or worry her own two grown children.
When symptoms became “unbearable,” she returned to the ER. After the same battery of heart tests, the cardiologist “took both of my hands in his hands, the kindest gesture, and told me that he could see significant heart disease. He explained that for women with heart disease, diagnostic tools often don’t work as well as they do for men.”
Thomas became angry – mostly with herself. “Why did I cave? Why was I afraid to go back and take care of myself? If that was my daughter, I would have demanded answers.”
She went to cardiac rehab (a medically supervised program designed to help people recover from heart events) and initially returned to work part-time, before taking medical leave due to a subsequent diagnosis of coronary microvascular disease. This was devastating for the active PR professional, who was involved in a number of charitable, community and business organizations. Thomas didn’t feel like the same person and experienced depression (she sought help but had to advocate fiercely for a therapist referral).
“Women are seven times more likely to be misdiagnosed in mid-heart attack and sent home from the ER compared to our male counterparts presenting with identical symptoms.”
Meanwhile, she tried to maintain some control by learning about her condition and was shocked to find her story wasn’t unique: “Women are seven times more likely to be misdiagnosed in mid-heart attack and sent home from the ER compared to our male counterparts presenting with identical symptoms.”
Attending the Mayo Clinic’s WomenHeart Science and Leadership Symposium was a turning point for Thomas and kicked off a new chapter helping other women learn about cardiac disease, research and self-advocacy. She started by giving talks in women’s living rooms and is now invited to speak at major healthcare conferences. Thomas writes the respected Heart Sisters blog, is active on social media (@heartsisters) and is the author of A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press, 2017).
“Heart disease was not a gift,” stresses Thomas. “There isn’t a single day that goes by that I don’t wish for my old self. I didn’t need this to find meaning in my life.” That said, she has found purpose as a staunch advocate for women’s health, reminding women that “knowledge is power – the more you know, the more you can stand up, confident that you know what you’re talking about” when it comes to your health.
Heart to heart: No-nonsense advice from John Arnot
Thirty years ago, in a hotel room on the last night of a work trip to Quebec City, John Arnot, then 46, had his first heart attack. He recalls “excruciating pain” in his left arm to the point that all he could think about was “bashing my arm against the dresser in hopes of relieving the pain.”
Unable to communicate well in French, he decided to fly back to Edmonton. His wife, Linda, picked him up and took him straight to the hospital.
“I had my last cigarette on that drive,” he says of ending a decades-long habit.
While tests didn’t find “anything wrong,” given Arnot’s family history (his mom and one of his brothers died of heart attacks in their 50s), he knew otherwise.
Four years later, on August 28, 1992, he had what he calls “the big one.” While out enjoying an anniversary dinner, he suddenly began to sweat heavily and the familiar pain returned in his left arm. Rather than “create a big scene,” he insisted his family drive him to the hospital.
“They would’ve taken my symptoms more seriously if I arrived by ambulance rather than walking in to the ER.”
In retrospect, that was a mistake. “They would’ve taken my symptoms more seriously if I arrived by ambulance rather than walking in to the ER.” In turn, his heart sustained considerable damage.
Arnot, now 76, jokingly describes himself as a “bad patient.” He’ll indulge in foods that are not exactly heart-healthy, but says he decided years ago to enjoy life rather than be bound by his condition. He loves to travel, going south in the winter and visiting his children and grandchildren in Toronto.
Nevertheless, he follows his healthcare providers’ advice (for the most part) and has a great deal of trust in them. He takes his medication, attends regular appointments, rides his bike and goes to the gym.
“Let’s deal with it and live with it,” is Arnot’s motto. “Today I’m here. I feel good, there’s some discomfort once in awhile, but nothing major at this point. I made a decision early that my health was not going to slow me down.”
Heart Sisters: Carolyn Thomas’s blog has been called “the best heart blog on the web” and an invaluable resource for women’s heart health.
Women Heart: The National Coalition for Women with Heart Disease: This online support group has about 30,000 members.
Heart and Stroke Foundation of Canada: Information, the latest research and resources about stroke, heart disease, recovery and treatment.
Originally published in Issue 4 of YouAreUNLTD magazine.