Thursday, July 14, 2011

Congenital heart patient champions women's heart health


Debby Flaherty-Kizer
Debby Flaherty-Kizer

When Debby Flaherty-Kizer talks to women about heart health and disease, she’s not rattling off statistics and procedures – she’s telling her own story. More than 30 years ago, Flaherty-Kizer was diagnosed with Ebstein’s anomaly, a rare congenital heart condition affecting the tricuspid valve. Because Ebstein’s impacts blood flow through the heart and lungs, the condition can be limiting, but Flaherty-Kizer works closely with her doctors to not only manage her condition, but thrive. “I set my own goals and challenges,” she says. “I’ve found the only limits are the ones you place on yourself.”

In fact, it’s her heart condition that has brought Flaherty-Kizer to her most rewarding work, educating women about heart disease as a WomenHeart advocate for the National Coalition for Women with Heart Disease. Over the last year, Flaherty-Kizer has given speeches and hosted informal educational talks on behalf of WomenHeart. “I’ve seen the light click,” she says. “Women say, ‘I never knew that was a symptom.’ Or, ‘Maybe I should go to the doctor and have my blood pressure checked.’ Helping women understand heart disease is necessary and valuable work; I could be saving a life somewhere."

Overcoming challengesBeing a leader for women is familiar territory for Flaherty-Kizer. In 1975, she was among the first women accepted into the United States Naval Academy. “My dad went there, he was an Air Force pilot,” she says. “He died in a plane crash and I wanted to go there, to honor him.”

Flaherty-Kizer passed the physical fitness requirements, but her admittance was revoked because of her condition. “I was devastated because I had never faced discrimination over my condition,” she says. That was a turning point for me. I promised myself I would do everything necessary to live a normal life, to be healthy and strong."Treating the whole personFor Flaherty-Kizer, the key to staying healthy is having doctors who understand her as a person, not just a patient. “I’ve had experiences where I feel like I’m just a number,” she says. “I want a medical team that’s there for me and understands the complexity of my issues. That is what I have at Mass General.”

Although Flaherty-Kizer now lives in New York, her Mass General team, including cardiologist Dr. Ami Bhatt, is in constant communication with her local doctors. “No matter which doctor I go to, each has access to my medical record and notes from recent visits,” says Flaherty-Kizer. “It has been amazingly simple to manage my health across state lines because all of my doctors share the same information and work together to manage my care.”

Dr. Bhatt and Flaherty-Kizer also discuss how Flaherty-Kizer’s condition affects her lifestyle. “As you get older, other health issues start to crop up,” she says. “Dr. Bhatt asks the right questions about what I’m doing, whether it’s how many laps I’m swimming or about my nutrition.” This support helps Flaherty-Kizer achieve goals she never thought possible, including indoor triathlons. “I never thought I could accomplish that, and now I’ve done three of them."Sharing her story, changing livesIn addition to her community outreach, Flaherty-Kizer was recently accepted into the WomenHeart Advocacy Institute, a three-day program in Washington, DC, to learn how to advocate for women’s health at the policy level. She will share her story with lawmakers to bring attention to women and heart disease on a national level.

And while her formal advocacy role is a new one, it has been a lifetime in the making. Decades ago, a colleague asked Flaherty-Kizer about an upcoming trip to Boston. “I told her I was seeing my cardiologist, for my Ebstein’s, and I figured that would mean nothing.” But her coworker’s daughter had just been diagnosed with the same condition. “She said, ‘I didn’t think there was anyone out there like her, and that lived to adulthood.’ I realized then there was something more I could do.”


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