I was born on November 9, 1977 in Uniontown, Pa. I was born a healthy baby. However, things turned for the worse when a hospital nurse found me in the nursery turning blue. I was immediately rushed by ambulance to Children’s Hospital of Pittsburgh where doctors discovered that I was born without a Pulmonary Valve. My diagnosis was Pulmonary Atresia with Intact Ventricular Septum. Open heart surgery was performed and doctors decided to create a “make-shift” valve by cutting open the flap of skin where the valve was missing so that I could get oxygenated blood throughout my body. Doctors also created an artificial shunt for blood flow from the lungs to my heart in case the valve did not work properly. At 14 months of age, I had a 2nd open heart surgery to remove the artificial shunt because the valve was doing it’s job. Throughout my childhood, I was pretty healthy, but had many physical restrictions. I could not participate in physical activities like sports. I visited Children’s hospital every 2 years for check ups and testing to be sure everything was working properly. I was also diagnosed with an ASD Atrial Septal Defect (hole in the heart ). Thoughout my teenage years, I felt good and was a member of the marching and concert band in which I played flute and piccolo. In my late teens, early 20s, doctors removed my restrictions and said I was doing great! Unfortunately, in my early 30s I began to feel different. I began having symptoms including shortness of breath, fatique, extreme coldness and blue feet and toes. I thought it was just signs of getting older, but after several months, I knew something was wrong. I first met with Dr. Stephen Cook at the Adult Congenital Heart Department at Children’s Hospital of Pittsburgh in 2011. After tests and bad results showing over 50% blood regurgitation between my heart and lungs, he recommended that I have a heart catheterization to close the hole in my heart. In November 2013, this surgery was performed and unfortunately surgeons discovered that I had not only 1 hole, but multiple holes..referred to as Swiss Cheese syndrome. Therefore, thus procedure was a failure. After much disappointment, Dr. Cook referred me to Nationwide Children’s hospital in Columbus, OH to participate in a research study to see if I would be eligible for a mechanical valve. After testing, results showed that the valve would not fit into my blood vessel properly. This was devastating news to me and my family. My last resort, a 3rd open heart surgery to receive a tissue pulmonary valve and complete closure of the holes. On December 2014, my prayers were answered with a successful surgery by Dr. Victor Morell at Children’s Hospital of Pittsburgh. Thanks to my cardiologist, Dr. Cook, my surgeon Dr. Morell and the staff at Children’s Hospital, I am now living with a heart that is better than ever! Although, a CHD patient for life, I feel “normal”. No more shortness of breath, blue toes, or extreme fatigue. CHD has no cure, it can only be repaired. But, it made me stronger and so thankful that I am one of the lucky ones who has lived 38 years with CHD! I am now an advocate for spreading awareness and funds for CHD research. I am a member of the ACHA Adult Congenital Heart Association and on the committee for the 5th annual Greater Pittsburgh Congenital Heart Walk.
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