Living with Tetralogy of Fallot, Ken

Ken's Story


Ken was born with a critical congenital heart defect that required surgery while he was still a baby. Read below as he shares his perspective of being an active adult living with a congenital heart defect.

My name is Ken, and I was born in 1981 with congenital heart disease (CHD). I had my first (and, so far, only) open heart surgery at the age of eight months to correct a defect known as tetralogy of Fallot. Like many people with CHD, I thought that the surgery had fixed me, and I was lost to cardiology care as an adolescent. I am incredibly fortunate in that I have enjoyed a healthy and active life that is somewhat unusual for people with CHD. I have always loved cycling; and in 2005, I completed my first endurance ride: 2 days and 180 miles between Illinois and Wisconsin. Since then, I have continued to pursue this passion by participating in multiple endurance rides across the country, including the 7-day, 560-mile AIDS/LifeCycle ride from San Francisco to Los Angeles in 2010.

Following a bicycling accident in August 2011 that resulted in a trip to the emergency room, I was suddenly reminded that I am not completely fixed and that CHD is, in fact, a lifelong condition. A cardiac MRI (magnetic resonance imaging) revealed an enlarged area in the main blood vessel leading from my heart to ,u lungs (main pulmonary artery), and I was able to seek the medical treatment I needed. The journey continues, and I am looking forward to the ride!