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Adult Congenital Heart Disease - Taylor's Story

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Posted 7/5/2014

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Taylor Harms will have a perspective most of his medical school classmates won't - the perspective of a patient. And not just any patient -- one who's had open heart surgery twice. "I first learned about my condition when I was eight years old," Harms says. "I went to the doctor with high blood pressure and it turned out I had a narrowed aorta." He had surgery to repair his aorta, the body's main blood vessel when he was eight. Harms also had a bicuspid aortic valve -- a condition where one of the heart's valves develops only two leaflets instead of three. The stress on his heart also meant that its main pumping chamber was much larger than it should have been. By July, even though Harms was feeling fine, his blood pressure was going up. His condition had worsened. "Blood was leaking back through that valve," explained Shane Tsai, MD, cardiologist and congenital heart disease specialist. "Instead of being ejected into the body, the blood is falling back into the heart's main pumping chamber." Harms would need open heart surgery to remove the narrowed section of his aorta and to replace his aortic valve with a mechanical valve. "We would prefer to get someone early in the stage of their disease," says Kim Duncan, MD, cardiovascular surgeon at The Nebraska Medical Center. "We can do a procedure and preserve cardiac function for a much longer period of time." Dr. Duncan performed surgery on Harms in mid-July. He replaced the aortic valve with a mechanical valve they hope will last for decades. Dr. Duncan also removed the narrow portion of Harms' aorta. Dr. Tsai says patients like Harms will become more common as medical advances continue. "As medicine and surgery has gotten better, we have more survivors," he says. "A few decades ago, 90% of these babies may not have survived into adulthood. We now expect that 85% of children born with these heart problems will survive into adulthood." But just because they live to be adults does not mean they are free from heart trouble. Dr. Tsai says that's where the medical center's program shows its importance. "For the first time in the U.S. there are more adults than children living with congenital heart disease. There are over one million adults with these problems," he says. "Unfortunately there are not a lot of specialized heart centers dealing with congenital heart disease." Because of UNMC Physicians' collaboration with Children's Hospital and Medical Center, Dr. Tsai says med center physicians are uniquely positioned to care for these patients throughout their lives. Dr. Tsai also treats pediatric patients at Children's. "We see them when they're babies and through adulthood," he says. "We have different interventions and surgeries we can perform and we work together as a group to decide what is best for each patient." Taylor Harms is recovering and in one week, will begin his second year of medical school. He's already learned a lot about what it's like to be a patient. He has a little bit of time to decide what specialty he'll follow as an MD. "I'm thinking maybe cancer," Harms says. "I think cardiology may be a little too close." For more information about treatments available at The Nebraska Medical Center, visit http://www.nebraskamed.com or call 1-800-922-0000.