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Ladies' Home Journal: Doctors are more likely to delay heart attack care for women than men. What happened when you first went to the hospital? And when did you know something was really wrong?
Carolyn Thomas: Yes, my story, unfortunately, is not uncommon. When I was misdiagnosed three years ago when I was 58, it seemed like a very high-drama story, but I learned later that it happens all too often. Heart attacks are growing among younger women, and it's even more likely that a woman under 55 will be sent home from the emergency room.
My symptoms started on my daily morning walk. It was so early that morning there was nobody on the streets. No dog walkers. No traffic. Nothing. Suddenly, out of the blue I felt crushing chest pains, nausea, sweating and a pain down my left arm. I was leaning against a tree, and I remember my first thought was, "This better not be a heart attack because I do not have time for this.""Pain down your left arm is not a symptom of indigestion."
But then I was quite frightened, thinking, "Oh my God, I can't move. What am I going to do?" I was hoping a dog walker would come by, but no one was out. What really startled me was the pain down my left arm because I had heard that's a symptom of a heart attack. After about 20 minutes, my symptoms began to ease up, and I was able to start inching home.
From there, a friend drove me to the hospital. They got me right in when I said "heart attack." We did all the tests. I was there for five hours, but believe it or not, everything came back normal. The ER doctor said, "Well you're in the right demographic for acid reflux. Go home, see your family doctor and you'll get a prescription for antacids." So I went home. I was so embarrassed because I felt I just wasted five hours of their very valuable time while truly sick people were lined up in the waiting room.
But three days later, I had exactly the same episode. Only this time, I wasn't even moving. I was sitting at my desk at work, when suddenly the same thing happened: crushing chest pains, nausea, sweating and that pain down my left arm. But this time, I knew it wasn't my heart because this man with the letters M.D. after his name had told me quite clearly, "It is not your heart." This went on for two weeks.
LHJ: You dealt with heart attack symptoms for two weeks? That's unbelievable.
CT: Yes. There was just no way I was going to go back to the ER after that first time. I didn't want to make a fuss. But I remember being so surprised at how horrible this "acid reflux" was. It was so brutal. For two weeks, I'd have these episodes off and on, but they kept getting closer and closer together. I had an appointment with my family doctor, but I was so busy. I flew to Ottawa for my mother's 80th birthday during all this, and it wasn't until I was on the plane home that I decided to go back to the ER. And it sounds insane now, but even then I didn't think I was going back to the ER for my heart. I thought I needed serious drugs to make this reflux stop. I couldn't even walk from the gate to the baggage carousel (I had to have the flight attendant arrange for a wheelchair), but somehow I was able to drive myself home. [Editor's note: Holy cow! If you have symptoms like hers, don't drive yourself; please call 911.]
When I finally went back to the hospital the next morning, I could tell by the looks on the faces of the staff that something was very, very different this time. They called a cardiologist in immediately. When he said the words "heart disease," I was shocked. I was taken from the ER to the operating room for an emergency angioplasty. I had a little stainless-steel stent implanted in one of my major coronary arteries, which was 99 percent blocked.
LHJ: Wow. You were in shape and you weren't a smoker -- do you have a family history of heart disease?
CT: No, no family history. I didn't have any of the other risk factors either. But I did have pregnancy complications, preeclampsia, years ago. I didn't find out until later that this is a risk factor.
When I talk to women now, they often ask about how to know if they're at risk. I just tell them to act now. Yes risk factors are important, but sometimes there isn't an obvious reason. The best thing to do is act as if you are high-risk. Start eating healthier. Start exercising. You don't want to be like me and wait until you have this massive cardiac event to find out. Unfortunately, we're often pretty low on our own priority lists. But you have to make time to care for yourself and to exercise, even if it means time away from your kids and your husband.
LHJ: Did you know you wanted to be an advocate? What made you start writing?
CT: I didn't know I wanted to be an advocate. But I was so gobsmacked by what happened to me, and the more I learned about it, the angrier I got. Your biggest risk factor for having a heart attack is having had a previous heart attack. So I knew I was in a high-risk place, and I wanted to know as much about it as possible. And also, I wanted to be sure that other women didn't have the same experience I did.
LHJ: What would you say is the main thing you know now that you wish you knew then?
CT: I think one of the main reasons why I believed the doctor when he said it wasn't my heart was because of my misconception of a heart attack. I thought of heart attacks as something that happened to men. When I pictured someone having a heart attack, I saw an old man, out on the golf course. One day he's out there playing a round, and he just clutches his chest and falls down unconscious. Someone calls 911. Then they come to do CPR and use the paddles to shock him. To me, that was a heart attack.
So when the doctor said it wasn't my heart it made sense to me in a way. Because even though it was horrible, I was fully conscious. I walked into the emergency room. I could talk. I went to work. And also, for example, my blood tests were fine, my EKG was fine and even a treadmill stress test was fine. And one of the problems is that a lot of the diagnostic tests that are used today for all heart patients have been developed decades ago. They were researched, designed and developed on male patients.
I tell women now: You know your body. You know when something is not right. Pay attention to that little voice inside of you! My little voice said to do something. But as soon as the doctor said different, I got out of there. And that was just denial. In hindsight, I look back and I think pain down your left arm is not a symptom of indigestion. I know that. Everyone knows that. But at the time, I was in denial.
Five months after my ordeal, I was accepted to the WomenHeart Science & Leadership Symposium for Women with Heart Disease at the Mayo Clinic. More than half the women I met there had been sent home too. One woman had been to the ER three times and sent home. She kept going back and saying to the doctors: "I don't care what you say, something is terribly wrong with me." After the third visit, the doctor suggested antidepressants. The fourth visit was for double bypass surgery. She was smarter than I was. A lot of women don't go back -- and they have deadly results.
You can read more about Thomas' story, and get regular updates from her on her blog at myheartsisters.org.