Three months ago I had a heart attack. And since the symptoms of a heart attack are different for women, and since the kind I had can strike young people with no markers of heart disease, I've decided to tell my story. And because I love to name drop, I'll do some of that along the way because I was with authors I love that night.
I was at Queen Anne Book Co. in Seattle, surrounded by friends. Authors Kirby Larson, Kristen Kittscher and I had just finished a presentation on our middle-grade mysteries when in a flash everything changed for me. I had full-on flu-like symptoms unlike anything I'd ever experienced before.
I whispered to Kirby that I didn't feel well and needed to leave. She took one look at me and tried to intervene, asking to take me home or to urgent care. Something was off. She told me she was worried, and that I looked "ashen." (That word comes into play later.)
I assured her I'd be fine. My friend Sara Nickerson looked concerned and touched her chest, a movement that triggered something in my brain.
As I headed to my car, a pressure came into my chest. Weird, but not too bad. I thought about what Kirby had said, how Sara had touched her heart. I tried to stop the crazy thoughts in my head that maybe I was heading toward a heart attack. I thought about going back to the store, knowing that anyone in there would help me. My dear friend Jane, a friend since college, had just left the bookstore and lives nearby. I knew I didn't have to be alone. But I decided to drive home anyway.
A few minutes into the drive, stabbing pain in my back came, and I knew precisely what it was — thank you PBS documentary on women and heart disease! Still, because I'm a dummy, I drove all the way home, threw up, and then the pain went down my left arm to my little finger.
I walked inside and asked Kevin, my husband, to take me to the ER. He asked no questions, just jumped up and grabbed his keys. I remember saying something like I might be embarrassed if it was nothing, but that I'd rather be embarrassed than dead. He just said: "We're going."
My heart attack was not the Hollywood kind where someone, almost always a man, grabs his chest and doubles over in pain. Every one of my symptoms was one that would stand on its own as a possible heart attack; all of my symptoms are ones that could be, and often are, dismissed by health care professionals, let alone by the people having them. When I walked into the ER, I listed them quickly and specifically. If you are a woman, or you know one, please take note:
All were recorded on the intake form, the word "ASHEN" in all caps, and I was taken in immediately. It was confirmed that I was having a heart attack, or as I now call it, a myocardial infarction (MI). Just a couple of months after a physical where I'd had a normal ECG and full blood work, with cholesterol scores so good I could have framed them. I exercise, eat reasonably well, don't smoke, I'm not that old — OK, I'm 55. And I was having a heart attack.
The MI was caused by a tear in the inner lining of an artery, which is called a spontaneous coronary artery dissection, or SCAD. SCADs occur predominantly in women who are fit and healthy, with an average age of 42. We don't know why they happen, and I'm not sure there's anything I could have done to prevent it from happening. The first articles I read kept referring to SCAD as a rare disease. The SCAD Alliance says this: "SCAD isn't rare. It's rare to meet a survivor."
My SCAD is being treated medically, which means healing on its own without stenting or bypass surgery. I've met survivors who have had multiple bypasses or stents, as well as a good percentage of us who, after an angiogram and hospital stays, are being treated with blood thinners and other prescription medications.
I've met some wonderful women through an online SCAD Survivors group, and I'm thankful every day for them and the research now being done at the Mayo Clinic in an effort to find causes. SCAD survivors share information on how hard the first year is, the fear of recurrence (a real fear, as it happens frequently), anxiety, making progress in cardiac rehabilitation, and finding a "new normal."
The Mayo SCAD study is a fine example of patient-initiated research and the power of social media. Women from around the world have connected online when searching for answers to a relatively unknown and underdiagnosed cause of heart attacks. We're still connecting online, still searching.
Each week there are new people sharing their stories, many who are in their 20s, 30s and 40s, and others like me, who are over 50 but still too young for a heart attack. Some tell stories where they slip in "after my third SCAD and second MI" or "three MIs in the first year." Sometimes the numbers in their stories are even higher. We all hope to keep the numbers down and find answers.
I am incredibly grateful to my friend Kirby, because her concern and her words got me to the point where I knew this was real. This was big. Ashen is an unusual color for me unless, as it turns out, my heart is not getting enough oxygen.
Heaps of thanks to my family and to my friends, especially those who, when they asked what they could do, came when I said that the dog really could use a walk.
Linda Johns is a librarian and children's book author who is happy to still be alive in Seattle. Find her online, on Twitter @LJBookie, and at cardiac rehabilitation three times a week.
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