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Patient Story: Battling Hypertrophic Cardiomyopathy

A Second – and First – Chance at Life
Tonya Wesley

By all outward appearances, Tonya Wesley was a healthy 26-year-old when she went to the late show at a local movie theater 11 years ago.

But upon leaving the theater, she fainted and fell face forward, suffering a gash on her chin.At the hospital, the ER doctor noticed that she had a loud heart murmur. He referred her to a cardiologist, who diagnosed her with hypertrophic cardiomyopathy, or HCM.

HCM is a complex type of heart disease associated with a thickening of the heart muscle, most commonly at the septum — the muscular wall that separates the left and right side of the heart — just below the aortic valve. The passageway to the aorta can become too narrow and lead to infection, irregular heart rhythm, chest pain or angina, heart attack, stroke or death.

But for the next decade, Ms. Wesley lived with the condition, despite suffering from chest pains, shortness of breath and fatigue. It affected every aspect of her life, from working as a server to simply walking around the mall. She always attributed her physical difficulties to being out of shape, though she worked out relentlessly. “I wouldn't admit that my heart condition was a problem,” she says.

But she could ignore it no longer when, while 12 weeks pregnant, she had an episode in which her heart began to race, accompanied by chest pains and shortness of breath. “I thought I was having a heart attack and was going to die,” she recalls.

Once at the hospital, tests revealed that it wasn't a heart attack, but, because of the HCM and her history of tachycardia, she was advised to have a defibrillator implanted. But the problem with implanting the defibrillator was the use of radiation, which is considered harmful to fetuses — especially during early development. The electrophysiologist thought it best to try to get her to Cleveland Clinic, where the procedure is performed with ultrasound and a minimal amount of radiation.

So she made the trip from her home in Charleston, W.Va., to Cleveland, where she learned that not only was the defibrillator a must, but the condition of her heart was not conducive to surviving a pregnancy. Prior to having a defibrillator implanted, she was recommended for a septal myectomy, a surgical procedure performed to reduce the muscle thickening in the heart. But it, too, was considered a threat to the baby.

Fortunately, Cleveland Clinic has one of the largest surgical practices for treating HCM. Its surgeons have been performing the septal myectomy procedure since 1967 and have done more than 1,600 myectomies to date.

Ms. Wesley placed her life — and her pregnancy — in the hands of Nicholas G. Smedira, MD, surgical director of the Kaufman Center for Heart Failure, Cardiac Transplantation and Mechanical Circulatory Support. He also is director of quality for The Heart and Vascular Institute, Department of Thoracic and Cardiovascular Surgery.

The main risk was keeping a constant flow of oxygen to the uterus. Miscarriage also was a big concern. “My thought was I would rather lose the baby trying (surgery) than to abort it,” she says.

She underwent the procedure in January 2008 and, not only was the surgery a success, but also her pregnancy. A healthy baby boy was born five months later, and Ms. Wesley says she is a new woman.

“I can walk stairs and exercise without feeling like there is an elephant standing on my chest. I can walk briskly without feeling lightheaded and can even incorporate a little jogging when I walk,”  she says, noting how important an activity it is now that her 14-month-old is walking.

And she can't say enough about her surgeon. “Dr. Smedira is an angel sent to me from God, and I truly believe that,” she says. “If he hadn't the courage and the skill to do what he did while I was pregnant, my beautiful miracle of a son would not exist. Not only that, I felt as though he cared. I wasn't just another surgery he had to do.”


Reviewed: 8/09


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