Pushing Boundaries with Adult Congenital Heart Disease: Chris’ Story

Chris was 15 years old when he decided that he wanted to be a firefighter. This was a bold move at the time, when most patients with his congenital heart condition — dextro-transposition of the great arteries, or d-TGA — were advised to avoid exercise and strenuous activity. But Chris was already pushing these boundaries as a dedicated athlete, and his doctor, Children’s Hospital Colorado Adult Congenital Heart Disease Director Joseph Kay, MD, supported him every step of the way.

Chris’ desire to stay active has greatly improved his own quality of life, and it helps the d-TGA patients that come after him. “Chris really pushed our understanding of how important exercise is for the very complex congenital heart defects,” Dr. Kay says. “He went all out and exercised like crazy, and that was the best thing for his heart.”

Decades later, Chris is fulfilling his dream of working as a firefighter, and he continues to set a new precedent for patients with d-TGA. He still visits Dr. Kay for care and guidance regarding his condition, and the two share a trusted bond.

“If I want to call him, he will always get back to me. And since we’ve built that trust, when he recommends I get a test done, when he recommends I get a procedure done, I’m like, ‘absolutely, let’s try it,’” Chris says. “I know that what he’s asking me to do is twofold: number one it’s for my best interest, and number two, they’re doing everything they can to make things better for the next generation.”

This relationship is a hallmark of the Adult Congenital Heart Disease Program at Children’s Colorado, where patients born with a heart condition can receive care for life. In fact, the program sees more than 2,000 patients annually and it’s the only center in Colorado accredited by Adult Congenital Heart Association (ACHA). The adult heart program is also situated within the nationally ranked Heart Institute at Children’s Colorado, which exceeds multiple national benchmarks and boasts a 97.9% cardiac survival rate across all age groups.

Patients have access to a multidisciplinary team that includes adult congenital heart disease specialists, congenital heart surgeons, heart imaging specialists, geneticists, psychologists, high-risk obstetricians, electrophysiologists, nurses and social workers, all of whom are trained to care for the unique challenges of growing up with a congenital heart condition.

These teams work together to coordinate a unique care plan for each patient, which adapts and evolves as children grow. Most importantly, physicians like Dr. Kay are trained and ready to ensure the best quality of life for those who began with the odds stacked against them.

For more information about programs at the Children’s Colorado Heart Institute, visit our website or call 720-777-2243.

Watch Chris’ story

*This blog post is sponsored by the Heart Institute at Children’s Hospital Colorado. Consistently ranked by U.S. News & World Report, the Heart Institute cares for all congenital and childhood heart diseases. The program is the largest in the Rocky Mountain region that maintains exceptional outcomes, with expertise in both open and minimally invasive heart surgery. The vast experience of their multidisciplinary heart team allows them to continue to offer individualized care to each patient they treat across the continuum, from the tiniest babies to fully grown adults.

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