Solving a Years-Long Medical Mystery: John’s Adult Congenital Heart Condition

John and Vicki were at a home improvement store in Fayetteville, Georgia in 2012 when it happened.

“There was a tremendous buzzing in my head, and I knew I was going to hit the floor,” recalls John, who was 64 at the time. “I grabbed Vicki’s hand and said, ‘This is it, kid.’ The next thing I remember is waking up with a gash on my head and three men working on me. I heard one of them say, ‘I’ve got his pulse.’”

John would later learn he’d suffered a cardiac arrest and been unconscious for four minutes. An off-duty emergency medicine technician (EMT) in the next aisle had heard the commotion and radioed for help. Quick action, including the use of a nearby portable defibrillator, saved John’s life.

The married couple was shaken by the incident but not completely surprised. After all, John had been diagnosed decades earlier with a heart defect called congenitally corrected transposition of the great arteries or CCTGA. This is a rare heart defect where the heart’s lower half is reversed.

At the time of his cardiac arrest, John had been having fainting spells for about seven years. He’d sought care at two Atlanta-area hospitals. But his doctors couldn’t pinpoint the cause of his symptoms or agree on a treatment plan.

“I had started to give up, to be honest with you,” says John. “I was sliding into a depression without even realizing it. I thought, ‘Well, I guess this will just keep happening, and then one day, I’ll pass out, and I won’t wake up.’”

Vicki was determined not to let that happen. The next day, armed with John’s extensive medical records, she got online and started to search for a new heart team.

Transposition of the great arteries is usually diagnosed early in life, but it can go unrecognized for many years. John learned he had a heart defect at age 19 during a work-related physical in 1966. However, he was not aware that the condition could lead to dangerously slow heart rhythms and congestive heart failure.

John didn’t have symptoms. For the next 30 years, he pursued what he describes as an adventurous life. He served in the U.S. Army, got his pilot’s license, flew helicopters and rode motorcycles, took up scuba diving, did martial arts, enjoyed river rafting and even jumped from airplanes for fun. Professionally, John worked as an air traffic controller, supervisor and trainer, first in Miami and later in Atlanta.

The first sign of heart trouble occurred on the job in 2005. “I was giving a work presentation and suddenly got a lightheaded, hollow feeling and passed out,” John says. “I had three more episodes like that before my cardiac arrest in 2012.”

John’s doctors were aware of his congenital heart defect and arrhythmia (irregular heartbeat) but didn’t know how to treat it. Thankfully, experts at Emory Heart & Vascular did.

Vicki learned about the adult congenital heart program at Emory Healthcare while searching the internet the day after John’s cardiac arrest. The program is the only adult congenital heart program in Georgia and one of the country’s most extensive. Intrigued by what she read, Vicki called to learn more.

“Vicki spoke to a woman who said their team specializes in heart defects like mine,” John says. “She faxed all my records to them and we drove down to Atlanta the next day for an appointment.”

During that hour-and-a-half appointment, the couple met with three Emory Healthcare cardiologists—all adult congenital heart disease specialists. “The team had reviewed my medical records and knew exactly what was going on,” John says. “Symptoms I’d experienced for years started to make sense, like puzzle pieces finally fitting together.”

The doctors explained that John’s congenital defect was causing dangerous heart rhythms, increasing his risk for heart failure. Soon after his initial appointment, John returned to Emory for surgery to implant a pacemaker device that would regulate his heartbeat. Michael Lloyd, MD, an electrophysiologist (expert who diagnoses and treats issues with the heart’s electrical system, which controls your heartbeat), performed the implant surgery.

The doctors worked together to ensure seamless, personalized care. “John’s experience exemplifies what makes our program special,” says Dr. Lloyd. “We offer comprehensive treatment from a large team of specialists dedicated to treating congenital heart disease in adults. The team includes electrophysiologists, heart failure specialists, device specialists and a highly skilled nursing team.”

John returns to the adult congenital heart program twice a year for a thorough evaluation. In 2018, Dr. Lloyd replaced his pacemaker with a defibrillator device that monitors John’s heart rhythm. The device can restore a normal heartbeat using an electric shock, although that hasn’t been necessary for John yet.

Dr. Lloyd notes that John’s follow-up visits are as well-coordinated as his initial treatment course in 2012.

“John sees his adult congenital cardiologist, Fred 'Rusty' Rodriguez III, MD, goes to the echocardiology lab for imaging, visits the pacemaker clinic to check his device, sees me in the congenital heart arrhythmia clinic, and gets his blood work checked in the lab,” Dr. Lloyd says. “This all happens on the same day in one location. It’s convenient for patients and allows providers to collaborate in real-time.”

It’s been 13 years since John’s cardiac arrest, and these days, his adventurous life includes downhill skiing, river rafting and hiking with Vicki at a gorge near their home.

“Most patients with John’s cardiac history are young adults, and it is a testament to his fortitude and Emory’s care that he is now 77 years old,” Dr. Lloyd says.

“John has played a large part in how well he has done under our care. He has a positive attitude and does not let his medical problems dictate his life. He keeps appointments, takes his medicines and works with us to understand his needs. He asks questions and knows his medical history. Importantly, he has a good social support system, including his caring wife, Vicki, who always attends his visits. We view family as a valuable part of the health care team.”

For his part, John continues to marvel at the care he receives at Emory. “When I was an air traffic controller, I worked four hijackings in Miami,” he recalls. “In situations like that, your training kicks in, and you do what it takes to help people survive. I see the same level of skill and focus in Dr. Lloyd and his team. If Vicki hadn’t found them, I wouldn’t be here. They are the best of the best.”

For more information, learn about congenital heart disease care at Emory Healthcare or call 404-778-0175.