Congenital Heart Disease

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PUBLIC PAGE
Tue, Jul 17, 2018 1:28pm

Full-spectrum care for a complex heart condition

By Stephanie Daniels, Operations Coordinator-Cardiovascular Diseases, @stephd

 

Congenital

When Mark Gill came to Mayo Clinic, he was in severe pain and his medical condition was grim. But thanks to a thorough evaluation and comprehensive care, Mark was able to regain his health. This story originally appeared on the Sharing Mayo Clinic blog.


Barbados businessman Mark Gill is no stranger to health care. Diagnosed at birth with a rare congenital heart condition called tetralogy of Fallot, he had surgery to correct the problem at age 7.

Mark remembers turning blue and feeling short of breath in his early childhood — both hallmark symptoms of tetralogy of Fallot. But despite that, the 62-year-old businessman recalls living a pretty normal life until 2013.

That's when Mark, who'd been diagnosed with atrial fibrillation and a slow heart rate, had a pacemaker put in. Within months, his health began to deteriorate significantly. Although the shortness of breath he had been experiencing had improved, Mark struggled with excruciating pain in his ribs and chest, as well as fluid retention.

An extensive search for answers brought little relief. Then Mark visited Mayo Clinic, where doctors discovered he had a complex condition that required a coordinated approach from his health care team. Now Mark is healthier than he's been in years, and he's pleased with the comprehensive care he received.

"I was blown away by the people I came into contact with at Mayo," Mark says. "They were all absolutely fantastic. I've never been in an establishment where everyone was so helpful."

MOUNTING CONCERNS

Mark spent most of 2013 seeking help at health care institutions in his home country and throughout the Southeastern U.S. to no avail. The pain persisted, and Mark's quality of life declined. He was often bedridden for days.

"I was in so much pain. I couldn't even walk up a flight of stairs," Mark recalls.

As a last resort, friends suggested that Mark travel to Mayo Clinic's Rochester campus. He took that advice. In July 2014, Mark met with Christopher McLeod, M.B., Ch.B., Ph.D., a cardiac electrophysiologist, and Crystal Bonnichsen, M.D., an adult congenital specialist. They evaluated his condition and uncovered the source of the problem. Mark was in severe heart failure and liver failure. His condition was dire.


"The vast majority of patients with complex congenital heart disease require lifelong follow-up." — Christopher McLeod, M.B., Ch.B., Ph.D.


"Like so many other people born with a congenital heart condition, Mark was developing the aftereffects of repaired congenital heart disease," says Dr. McLeod. "The vast majority of patients with complex congenital heart disease require lifelong follow-up. The initial repair surgeries performed during infancy or childhood need revision, or they develop secondary issues that require intervention or medical therapy."

The constant pain Mark felt was due to severe liver enlargement related to heart failure. Thirty-five liters of extra fluid also had built up in his chest and abdomen and had to be removed. His care team discovered Mark had three leaky heart valves. Two would need to be replaced, and one potentially could be repaired. On top of all that, Mark experienced rapid and potentially lethal heart rhythms.

To control his heart rhythm and improve his symptoms, Mark was placed on medication, and he had a cardiac defibrillator implanted. Too weak to undergo an open heart procedure at that time, Mark returned to Barbados to recover his strength in anticipation of the upcoming cardiac surgery.

HEALING HIS HEART

Mark returned to Mayo Clinic in October 2014 for valve repair and replacement by cardiothoracic surgeon Joseph Dearani, M.D. The surgery went smoothly.

After two weeks recuperating, Mark was able to go back home again. As part of his cardiac rehabilitation, Mark began riding a stationary bike and swimming.

"I was amazed at how I started to get stronger and stronger," Mark says. "It was phenomenal what I could do within a year of the operation. It was a complete transformation."

Mark was able to go back to work full time and attend family functions again. But in March 2017, nearly 2½  years after his valve surgery, Mark's heartbeat began to fluctuate. Once again, he turned to Mayo Clinic.


"Dr. McLeod is so reassuring. He made me feel so at home and answered all of my questions." — Mark Gill


This time Mark traveled to Mayo Clinic's Florida campus, where Dr. McLeod had relocated. He advised Mark that a minimally invasive, catheter-based ablation procedure could fix the irregular rhythm.

"Dr. McLeod is so reassuring," Mark says. "He made me feel so at home and answered all of my questions."

Due to Mark's complicated anatomy and previous heart surgeries, the procedure took more than four hours to complete. But in the end, it was a success.

Because of his unique condition, doctors want to monitor Mark's heart rate going forward. But instead of traveling every few months to the U.S., Mark can send his information to his care team electronically via a special machine connected to his pacemaker.

"This allows us to keep tabs on him without inconveniencing him," Dr. McLeod says. "But we can know immediately if there is an issue."

Today Mark is back to enjoying life in Barbados. And thanks to his Mayo Clinic care team in Florida and Rochester, Mark says he's seen a dramatic improvement in his quality of life — back to what it was like 20 years ago. "It's great," he says. "Without Mayo, I wouldn't be alive now."

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