By AMERICAN HEART ASSOCIATION NEWS
The list describing Anthony DiLemme is long but life-changing. He’s a 32-year-old New Jersey-to-Southern California transplant, a rock climber, a cyclist, a blogger, an avid volunteer and an enthusiastic high school science teacher.
He also is a two-time veteran of open heart valve replacement surgery.
Surgery was well-planned the first time around, in November 2013, to finally fix a congenital heart defect called a bicuspid valve. That’s when the heart’s aortic valve develops only two small flaps or leaflets instead of three that work to allow blood flow from the heart to the aorta and to prevent backflow.
The second surgery, in March 2014, was a surprise wild ride to replace that new mechanical valve that had become compromised with infection.
“I’ve been working with kids for 10 years, and my previous life’s mission was to teach kids as best I can,” said DiLemme, who during the summer volunteers at Camp del Corazon on Catalina Island, a summer camp for kids with heart disease. “That’s still my goal professionally, but now I’m really focused on helping people with congenital heart disease, especially children, as best I can.”
DiLemme is one of a team of newly established American Heart Association Patient Ambassadors. The group offers support and information by sharing their personal experiences and information with the millions of Americans impacted by heart disease and stroke.
He says his life — his active lifestyle, growing up with a congenital heart defect, and even his summers working as a camp counselor — has been leading up to his newfound mission.
From discovering it was time to have surgery to the aftermath, DiLemme has chronicled his journey on his blog. Now, his work with the AHA will be an extension of that.
“This journey has brought me many new friends,” he wrote in an August 14 post. “We share a common bond, and through the internet we connect and share our experiences with each other. It is difficult to talk about our journeys with family and friends who have not gone through it themselves. Even though they empathize and care, they do not fully understand the emotional and physical baggage that comes with heart surgery.”
DiLemme has a real kinship with people who have gone through the same surgery. But with some, it goes even further.
Earlier this summer, he was tuned in to a Radiolab podcast in time to hear the astrophysicist and heart valve blogger who inspired him to start blogging, Summer Ash. The show was called Tell-Tale Hearts, featuring an orchestra that had sound effects for her heart surgery three years ago.
She described something that began happening after the surgery, something that happens to DiLemme as well.
“My mechanical valve is audible when you stand next to me,” he said. “If we are standing in an elevator, you can hear the heart click, you can hear it thump. … It’s hard to fall asleep because of it. … I feel every beat as if someone is tapping their fingers on my chest.”
While in full science teacher mode, he researched and planned for weeks for his first surgery. His second surgery was done as an emergency after experiencing severe shortness of breath, and his doctors discovering the new valve was coming off because of the infection.
“You realize you don’t have control,” he said. “It is not on your terms and you don’t have preparation. After the second surgery, the biggest challenge was the emotional and mental recovery. With the first one, I had all this strength and ammunition for recovery. I try to be honest in my blog about the depression part of it. You are down in the dumps and you feel depressed.”
What got him through the darkest part was his cardiologist’s blessing to get back to his active life. Today, DiLemme says he is a stronger rock climber, and not necessarily because he has a better-functioning heart, but because he is more motivated and focused.
“I feel as if I have been mentally preparing my whole life for this,” DiLemme said. “When people find my blog and email me, they usually are about my age, also athletic and they just found out … and that’s a big mental shock. They are afraid of not being able to do something again or get back to their life. When they see on my blog that life goes on after heart surgery, they are so happy and hopeful.”
Connect with Anthony DiLemme and other AHA heart valve ambassadors, as well as others living with heart valve disease and those who care for and support them, on the American Heart Association’s Support Network (registration required).
Photos courtesy of Anthony DiLemme