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Cardiomyopathy: The other heart disease

Cynthia Burstein Waldman of Los Angeles got tired of feeling she knew more than her doctors did about her hereditary heart condition, hypertrophic cardiomyopathy; tired of worrying that a provider might accidentally give her a contraindicated dru...

Cynthia Burstein Waldman of Los Angeles got tired of feeling she knew more than her doctors did about her hereditary heart condition, hypertrophic cardiomyopathy; tired of worrying that a provider might accidentally give her a contraindicated drug, like nitroglycerin, in an emergency.

"It's not a disease most people, even cardiologists, see in their practice," she says. "They see coronary artery disease, they see older men. I was in my mid-30s, a healthy woman."

With proper medication and treatment, patients with the condition (in which the heart muscle thickens) can live a normal life. Or they can suffer heart failure and eventually need a heart transplant. Waldman's father had the hereditary condition, and she found out in her 30s that she did too.

She found a national advocacy group, the Hypertrophic Cardiomyopathy Association, and through the first years of her disease depended more on the collective wisdom and experience of the association's members than on the conflicting advice of her doctors.

At a national meeting of the group in New Jersey, she met two physicians from the Mayo Clinic's Hypertrophic Cardiomyopathy Clinic. The clinic treats 300 patients with her condition each year -- perhaps 100 times more than any of her physicians saw.

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After several years of checkups and medications to control her disease, her symptoms -- fainting, difficulty breathing, increasing heart flutters -- worsened. The things expected of a mother in her 30s became impossible. "I would take my son to baby music classes," she says. "And they'd say, 'Pick up your baby and swing him around.'" Yeah, right, she thought.

She knew it was time to look into surgery to remove a portion of the thickened muscle in order to improve blood flow. She wanted a surgeon who had done the procedure a lot. "The doctors in California may have done this one or two or three times," she says. "The surgeon at Mayo has done it 150 times."

In 2006, she got on a plane to Rochester, Minn., for successful surgery that has relieved her symptoms.

Covered by a Blue Cross/Blue Shield PPO, her network of providers is nationwide, and the Mayo Clinic is in the network. Surgery there was "covered like it was next door," she says. Mayo doctors work with her local physicians in Los Angeles on follow-up care, but she'll continue to go to Minnesota for yearly checkups.

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