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Walking the Walk

Why a young woman with congenital heart disease wants to tell you all about it

Years ago, a rare heart problem nearly killed Kristy Michael while she was on a bike ride. Today she's walking to help the American Heart Association raise money to research her disease.

On her 31st birthday, Kristy Michael, an avid cyclist, swimmer and runner, found herself lying on the side of the road, her heart racing out of control, convinced she'd met her end.

"I was riding my bike to the gym, just cresting the hill, when my heart rate shot up," says Michael, who had previously experienced some milder heart-racing episodes. "I sat on my bike for a while, then I couldn't sit anymore. I sat down on the side of the road, and then I couldn't even do that. I was lying down when a guy came by with a cell phone and called an ambulance."

Michael has become one of the American Heart Association's staunchest promoters and fundraisers in the San Francisco Bay Area. She has persuaded her coworkers, her employer, and friends at several other companies to participate in the AHA's annual Heart Walk in San Francisco two years in a row.

A surprising diagnosis

Today the outgoing sales manager from Oakland has something in common with former Vice President Dick Cheney: both have an implantable cardioverter defibrillator (ICD) installed in their chests. The tiny device, similar to a pacemaker, is programmed to give Michael's heart a lifesaving electric shock whenever the organ shifts into overdrive. The shock restores her normal heartbeat.

Michael had the surgery nearly two years ago, right after the birthday scare when doctors diagnosed her heart problems as a rare congenital disease called Arrhythmogenic Right Ventricular Dysplasia, or ARVD. It's a progressive heart condition in which the muscle of the right ventricle is replaced by fat and fibrosis, causing abnormal heart rhythms. It affects about six in 10,000 people, and accounts for up to 5 percent of sudden cardiac deaths in people under 65 years of age. It's a fairly common killer among athletes who perish due to sudden cardiac death.

While Michael experienced some heart problems before her 31st birthday -- she passed out once while teaching an aerobics class -- doctors had misdiagnosed her condition as a small spot on her heart that was sensitive to adrenaline, she says. They put her on medication (Atenelol), and told her not to exercise quite as intensely.

But Michael's health steadily improved after the aerobics incident, and she was eventually able to go off her medication and even increase her physical activity. She was participating in triathlons and completing 100-mile bike rides when she nearly died in 1999.

"On that day, my birthday, I thought I was going to die," says Michael. Today she has toned down her exercise routine, but remains quite active. She still rides her bike, (although she sticks to flat areas), she still works out at the gym (although less intensely), and she has taken up yoga.

Scaling back on exercise

Michael still has about 3,000 mildly irregular heartbeats a day, according to the ICD in her chest, which has had to kick in and shock her only twice in two years. She'll need to have the device replaced every four to seven years, when the battery runs out.

"The hardest thing for me was knowing that I couldn't ride my bike and work out like I used to," says Michael. But she has a full life, she says, and is very grateful to her "awesome" doctors and to the American Heart Association for all of the research they've done on ARVD.

Michael is especially pleased that the AHA has funded some grants specifically for research on ARVD. "I'm just very thankful and supportive of the American Heart Association," she says, "because so much of the money they raise funds research."

And if she has her way, she'll continue to participate in the walks for a long time to come.

Further Resources

American Heart Association's Heart Walk Call 800/AHA-USA1 (800/242-8721) to find out the locations and dates of Walks near you.

American Heart Association National Center Field Operations 7272 Greenville Ave. Dallas, TX 75231-4596

Johns Hopkins ARVD Project Johns Hopkins Hospital 600 North Wolfe Street, Carnegie 592 Baltimore, MD 21287 Attention: Julie Rutberg, MS Phone: 410/502-7161 Fax: 410/614-1345

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