Growing up, Adrianne Rogers was an active athlete, pursuing interests in basketball, football, skateboarding and motocross racing. She was skilled enough to play up on a varsity softball team as a middle-schooler.
But at age 13, she began to experience an inexplicable decline in performance and endurance. She chalked it up to "being out of shape" and tried harder. But her decline persisted. At Rogers' annual well visit two years later, her pediatrician heard a heart murmur. Rogers was referred to a cardiologist, and after an EKG, and echocardiogram and a heart catheterization, she received a one-in-a-million diagnosis: restrictive cardiomyopathy.
Restrictive cardiomyopathy occurs when the walls of the lower chambers of the heart become rigid, making it harder for them to pump blood out to the body properly. While many cases are mild, some are severe enough to cause heart failure – a sometimes-fatal condition resolved only by a heart transplant. Restrictive cardiomyopathy is usually diagnosed in the elderly. It's an extremely rare diagnosis in teens.
Rogers was benched from sports of any kind. Diuretics and blood pressure medicine helped control her condition. But by the time she was a senior at UK, she began having episodes of atrial fibrillation. Her atria – the upper chambers of the heart – were struggling to keep a normal rhythm.
Atrial fibrillation, or Afib, is associated with higher risks of stroke and heart failure, so Rogers went to see Dr. Andrew Leventhal, director of the Kentucky Adult Congenital Heart Program at the UK Gill Heart & Vascular Institute. Leventhal is among an elite group of cardiologists with special training to recognize and treat the issues that affect adults with congenital heart defects.
Rogers instantly bonded with Leventhal.
"I just fell in love with him," Rogers said. "It was clear that he knew a lot about my condition and was committed to keeping a close eye on me."
People like Rogers who are diagnosed with heart defects as children face unique challenges as they become adults, Leventhal says.
"It wasn't that long ago that children with heart defects didn't survive to adulthood," he explained. "Technical advances in cardiac surgery have improved outcomes dramatically, but that presents a new issue: Patients who reach adulthood have outgrown their pediatric cardiologists and the facilities that provide treatment – typically children's hospitals. Simply transitioning to an adult cardiologist isn't the best fit either, since their heart problems can be very different from cardiac conditions that begin during adulthood."
Leventhal followed Rogers carefully as she slipped in and out of Afib three times in a year. Medications and cardioversions (a procedure that attempts to shock the heart into a normal rhythm) weren’t working. Her cardiac index — a measure of how much blood her heart was pumping — was low. Rogers wouldn't survive long without a heart transplant.
"I was laying there and felt something weird and a little uncomfortable on my back," she says. She then realized that the sensation she was feeling was that of a healthy, beating heart.
"It had been so long since I'd felt a real heartbeat that I didn't even recognize it at first."
Rogers follows up regularly at the Gill under the care of Dr. Navin Rajagopalan, medical director of heart transplantation.
"Adrianne is taking great care of the gift she has been given," Rajagopalan said. "I always have a moment of gratification when the surgery is completed and the patient is doing well, but it's especially rewarding when we can help a younger person recover and live a normal, healthy life."
She now visits the gym regularly for strength training and has used her recovery time to take up skateboarding, painting and guitar. She returns to UK in the fall and will graduate in December.
"It's crazy how good I feel," Rogers said. "I really haven't felt well since I was 11 or 12, so this all feels amazing."
At each follow-up appointment she makes a point to see every member of her care team, all of whom made her feel like she was their only patient, she says.
"They were so accessible and helpful; I felt super-comfortable during my time in the hospital waiting for a new heart," she says. She even painted gifts for Donna Dennis and Heather Ross, who were responsible for coordinating her care pre- and post-transplant.
While Rogers was hospitalized and waiting for her new heart, she was visited by a young man who'd recently had a heart transplant of his own.
"He really calmed my nerves and made me realize this was doable," she says.
So, when Dennis asked Rogers if she would talk to another transplant candidate, she was more than willing to pay it forward.
"I can give them an experience to relate to, and they see that a transplant isn't so scary," she said.
Leventhal wants young people diagnosed with heart defects to understand the importance of regular follow-up care with a cardiologist trained to work with these unique conditions.
"Even if you've been told you're cured, even if you're feeling good, you need to have a relationship with a cardiologist who specializes in treating adult patients with congenital heart defects," he said. "Adrianne's story is the perfect example of someone who was careful about managing her defect but still became critically ill. Thankfully, she was wise to keep up with her care and seek help when she didn't feel well. That was a huge factor in this success story."
The UK Gill Heart & Vascular Institute is at the forefront in the battle against heart disease and stroke in Kentucky. It is nationally recognized as a leader in advancing the treatment and prevention of cardiovascular disease. Learn more about Gill Heart & Cardiovascular Institute »
UK Transplant Center specializes in the care of patients with advanced, end-stage organ disease, performing more than 170 transplant procedures annually, including kidney, lung, liver, heart and pancreas. Learn more about the UK Transplant Center »
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