Imagine: A room humming with stories, gracious laughter, and the faint ticking of mechanical heart valves. A room full of people between whom there is an instant connection and sense of kinship. A room full of people who defied the odds. A room full of living miracles.
Last night, I attended the Go Red Survivor Gathering at OceanView in Falmouth. The event, hosted by the American Heart Association in Maine, brought together women and men who have survived heart disease and/or stroke. Survivors mingled and swapped stories about open heart surgeries, cardiac rehab, bleeding out on tables in operating rooms, and being brought back to life.
There were a few women in particular whose stories resonated on a very personal level. Katie Teague, who approached me when she heard that we shared the same condition (transposition of the great arteries), shared her story about receiving a heart transplant twenty-six years ago. Never expected to live past childhood, after her transplant, Katie went on to live a full, happy life and is the mother to two sons – one of whom survived the recent earthquake in Ecuador.
Active, young, and healthy, Nicole Hardy’s doctors initially brushed off the idea that her fatigue and general feeling of discomfort could be a symptom of a cardiac issue. Luckily, she listened to her intuition and contacted the doctors at Brigham and Women’s Hospital, where she underwent open-heart surgery for a leaky aorta, a condition she’d had all her life but had never known about. Nicole now shares her heart experience as a volunteer spokesperson and advocate for the American Heart Association in Maine.
Another inspiration was a woman who, coincidentally, was already in touch with the AHA in Maine to serve as a volunteer when she experienced her own heart event. She contracted endocarditis, a bacterial infection of the heart. She was given the choice of an organic valve (pig or cow) or mechanical. She chose the latter. Before her operation, she was told she would never be able to have children as a result of her heart condition. And yet this woman is now the healthy, happy mother of a son.
Pat Kirby was the guest speaker for the event. Former Baltimore detective, FBI profiler, and inspiration for the character of Clarisse in The Silence of the Lambs, Kirby shared the story of her own heart condition. When she called her doctor in 2002 to complain of back pain, a heaviness in her chest, and fatigue, he insisted it was only allergies and advised her not to worry. When the symptoms worsened, her doctor agreed to see her and discovered that she was having a heart attack. There was hardly any blood getting to the bottom of her heart. Surgeons attempted to fix this by placing a stent, which stopped working after too much scar tissue built up around it. Kirby’s body rejected six stents before she did her own research and discovered a different way to treat her aortic spasms.
Kirby now partners with the AHA and acts as a spokesperson to encourage women to act as their own advocates when it comes to heart health. Too often, Kirby says, doctors “treat women like little men” when it comes to cardiac symptoms. They use the same treatment protocols as they would on male patients; however, often these methodologies do not work. Women’s heart conditions must be approached in a different manner. Thanks to the AHA’s Go Red campaign, doctors are now more enlightened when it comes to diagnosing and treating women with cardiovascular issues.
The Go Red movement has made significant advances in research and awareness of women’s heart health, but even the folks at AHA say there is always room for improvement. When asked why she believes people are more likely to donate to breast cancer research than to the AHA, one volunteer said, “There’s a stigma that heart disease is self-inflicted. You’re overweight, or you smoke or don’t exercise. But it’s often no one’s fault. Like you, with your congenital heart defect. You didn’t cause that. I didn’t give myself endocarditis.”
It is the American Heart Association’s mission to change this stigma about heart disease. Cardiovascular disease kills four times more people than cancer. By becoming more educated on the prevalence of heart disease and stroke, we can help put a stop to that terrifying statistic. When the AHA in Maine reached out to me after reading my Go Red for Women blog and asked me to act as a guest blogger, I jumped at the opportunity. Pardon the pun, but this cause is dear to my heart. I am grateful that I can use my own condition and story to increase awareness of heart disease, stroke, and heart defects.
I hope that by sharing some of these survivors’ stories, we can put a human element to heart disease. You can imagine Katie Teague, red scarf glittering in the lights, talking about walking on the beach with her father after her heart transplant. Or Nicole Hardy, her kind eyes lit up as she talks about her daughter finding comfort in the ticking of her mechanical valve. Or Pat Kirby, interviewer of serial killers, thanking God every night from the bottom of her no longer broken heart for giving her a second chance at life.
Imagine: here in this room full of survivors, all of us have tell-tale hearts. We long and love to share our stories. All you have to do is listen.
(And Go Red. There’s always that, too.)
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