Priscilla Riley

Priscilla Riley with Dr. Andrew Leventhal at a recent appointment.

Clinical study makes a difference for Riley

As a small child, Priscilla Riley, now 70, had rheumatic fever that damaged her heart. Her heart problem meant she could not run and play with other children, she says sadly. She could only watch from the sidelines. Her heart problem became something she just lived with, making adjustments as she could. In 1993, she had open-heart surgery to replace two of her heart valves. Recovery was difficult: Riley spent several weeks in the hospital and two months recovering. But the surgery was successful and for a while she felt better.

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Riley is glad to be able to stay at home.

Gradually, though, the problems returned. One of the replaced valves was leaking. Riley began suffering from congestive heart failure – a potentially life-threatening condition in which the heart can’t pump enough blood to meet the body’s needs. Fluid builds up in the lungs making it difficult to breathe.

At one point, doctors removed 60-70 pounds of fluid from Riley’s body. She’d feel better, but then the fluid would begin to build up again. Her congestive heart failure would get worse and worse, until finally she would need a trip to the hospital. The fluid would be drained and she would feel better temporarily. It was a cycle that happened over and over.

Because of her age and her previous surgery, Riley was not a candidate for traditional surgery. Doctors feared she would not survive.

Riley’s doctor at Manchester Hospital asked her to go to the Congenital Heart Clinic at UK, but Riley said no. “I’m stubborn,” she said, with a twinkle in her eye.

But by April, Riley was so ill it looked like she might not make it. That’s when she came to UK and met Dr. Andrew Leventhal, an interventional cardiologist at the Adult Congenital Heart Clinic, part of the UK Gill Heart & Vascular Institute.

Leventhal is a co-principal investigator on a study of a new replacement heart valve called the Sapien 3, and he realized Riley might be a candidate.

The trial, known as COMPASSION 3, tests the efficacy of the Sapien 3 valve as a replacement for a diseased pulmonary valve. The Sapien 3 has already been approved for replacement of the aortic valve.

“The COMPASSION Trial is an excellent example of new technology that will help bridge the gap for adults with congenital heart disease who still need specialized follow-up care,” said Leventhal.

Instead of open heart surgery, the replacement valve is inserted through a vein in the patient’s leg and threaded up to the heart. The incision in Riley’s leg required only a single stitch.

The procedure went exactly as doctors had hoped, and Riley was on her way home two days later.

“If it hadn’t been for a small problem with her blood pressure being low, a problem she’d had before this procedure, she could have gone home the very next day,” said her friend and pastor Anthony Lovett, who accompanied Riley to the procedure.

Riley’s pastor Anthony Lovett helped her make trips to UK.

“It still blows my mind,” Lovett said. “The recovery was minimal – no recovery, really. Get her blood pressure regulated and head on home, no problem.”

And unlike the open heart surgery she had in 1993, Riley felt better almost immediately.

A month after her procedure, all indications are that she’s doing very well. She feels 100 percent better, she said, and is able to do things she could not do before. The valve completely fixed the leak.

“I’m cooking again,” she said. “I wasn’t able to cook before. And I help my son Desmond with his laundry.”

When she talks to Dr. Leventhal, tears fill her eyes.
“How are you feeling?” he asks.

“I’m good,” she tells him. “I feel so much better.”

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Riley with her son Desmond Thompson