He has only one regret: that he didn’t capture his mother’s life story and precious moments on video before she passed away. But it is this regret that inspires award-winning videographer Daniel Cortes Reyes to create legacy documentaries for others, so that their life stories can be shared with future generations.
His own story is one of survival, which he hopes will serve as inspiration to children and adults living with congenital heart disease to get the specialized care that will help them live long lives.
Cortes Reyes, 37, was born with a heart defect. “My type of congenital heart disease [CHD] is called transposition of the great arteries,” he explains. At 16 months old, he underwent a complicated surgery to redirect the flow of blood through his heart, in hopes he would live to adulthood. At the time, it was the best that modern medicine could offer.
At 16 years of age—the last time Cortes Reyes saw a cardiologist until last summer—he was told he no longer needed to see a specialist and could live a normal life, so long as he avoided contact sports that might put sudden pressure on his chest, such as football. What Cortes Reyes, like thousands of people living with CHD, didn’t know is that ongoing follow-up care with a team of specialists dramatically improves chances of survival.
Childhood heart issues return
When Cortes Reyes became ill last summer, neither he nor his doctors knew the details of his CHD, and a cardiologist was not consulted. After all, he’d felt healthy most of his adult life. Following a month-long hospitalization and several invasive procedures, Cortes Reyes returned home, only to fall sick again.
A second hospitalization, this time at Providence Sacred Heart Medical Center in Spokane, connected him with cardiac specialists trained in the care of adults with CHD. Soon, he was able to go home with a greater understanding of his heart disease and the complexities of living with CHD.
And while that is good news, Cortes Reyes’ long stretch without specialized medical care has taken a toll, and he might need a heart transplant in five to 10 years. His cardiologist, Jeremy Nicolarsen, MD, FACC, says that if Cortes Reyes had been getting regular care for CHD throughout his adult life, it is possible he would have had a shorter, less-complicated hospital stay last summer and perhaps even avoided his current declining health.
Special care for special needs
“Through advancements in diagnosis, surgical techniques and long-term management, people born with heart disease are now surviving well into adulthood,” Dr. Nicolarsen says. “In fact, there are now more adults than children living with CHD.”
The key, according to the American College of Cardiology, is that treatment for adults with CHD should be delivered by, or in collaboration with, clinicians trained in treating adult congenital heart disease, or ACHD.
Cortes Reyes now knows how important it is to describe his congenital heart disease to health care providers and to get regular care with his ACHD cardiologist. “You don’t know what you don’t know,” Cortes Reyes says. He wants others who were born with heart disease to know the importance of ongoing care from specially trained providers and to benefit from recent medical advancements.
By Dr. Nicolarsen’s estimations, there are roughly 3,000 adults in Spokane and surrounding communities living with CHD, only half of whom are receiving regular care by ACHD-trained specialists. More people getting proper care for congenital heart disease means more life stories to be shared.
The right care for your heart
If you have congenital heart disease (CHD), it’s important that you advocate for yourself and establish regular visits with providers who have dedicated training for adults with CHD. For more information, call the Providence Adult and Teen Congenital Heart Program at 509-474-6707.