Kathy Kastan

Shifting beliefs about who is at risk

Kathy Kastan was an athlete her whole life. She ran several miles every week, keeping her petite figure, and was a regular at her local swim class.

When she was in her early 40s, she started having unusual symptoms of fatigue—but only during exercise. She would notice a shortness of breath after swimming just 1 lap, or she'd have to stop after running a short distance to gain steadiness. But like so many other women, she attributed it to "just stress and turning 40."

The moment when she realized she could no longer ignore the problem came during a bike ride with some girlfriends. They noticed her turn suddenly pasty pale, and just as suddenly, she felt nauseous, began sweating profusely, and felt a sharp pain down her right arm.

She called her husband, who was a doctor. His response echoed that of her own physician: "You can't have cardiac disease—you don't have any risk factors." Still, she saw a cardiologist who misdiagnosed the problem as "mitral valve prolapse," which in his mind was the only explanation for a nonsmoker with perfect blood pressure and cholesterol levels.

The following week, Kathy was in Colorado on vacation. While running across the street, her familiar vague symptoms suddenly became classic heart attack symptoms. She collapsed on the ground and remembers thinking, "at least, when I die, I'll be in a beautiful place."

After 15 minutes, she was able to stand and get herself back to where she was staying, where she slept until her family returned. She saw her doctor soon after, who, despite having no explanation for the episode, did not recommend further cardiac testing, chalking it up to a bit of a medical mystery.

When, 4 days later, Kathy found she couldn't run at all without feeling like she was going to collapse, she had enough. She saw a new cardiologist who gave her an ECG and the first stress test of her life. "When he saw how my heart was performing during exercise, it was he that turned pale," she said. "He couldn't believe what he saw on the monitor."

She was admitted into the hospital that day. Over the next several months she received 5 catheterizations, 3 stents, radiation to her vessels, and finally emergency bypass surgery. It was a roller coaster of emotions for Kathy—she felt terrified at what lay ahead, relieved that something was finally going to be done, and frustrated by her state of health.

"I went from a healthier-than-average woman with plenty of energy to almost an invalid who could barely get from room to room," said the mother of 3 young boys. "I felt as though my family was suffering. It was a very difficult time."

Eventually, she got in touch with WomenHeart, a national coalition of women with heart disease and a partner of Her Heart Community. The advisors there recommended a doctor who specialized in women with heart disease. What followed was a very different type of experience. "My new doctor listened. She spent time with me. She was aware of the problem and how it specifically impacts a woman's body."

After trying a series of medication regimens, Kathy and her doctor found a balance that enabled her to get her life back. Since then, she has dedicated her life to helping to fight heart disease in women, becoming president of WomenHeart and a regional board member of the American Heart Association and authoring the book "From the Heart: A Woman's Guide to Living Well with Heart Disease." She has attended science and leadership symposiums and often speaks publicly at WomenHeart events. "I want to share my experience," Kathy says, "so that women can partner with their doctors to stop the undertreatment, misdiagnosis, and general mistreatment of women's hearts."

Kathy Kastan is a WomenHeart patient advocate. For information about WomenHeart, visit womenheart.org.