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Patient Story: Priscilla Riley

After a lifetime of heart problems, clinical study makes all the difference for Manchester woman

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.

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.

Her congestive heart failure would get worse and worse until finally, she would need a trip to the hospital. 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. It was a cycle that happened over and over.

Finding the right care at UK

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 Adult Congenital Heart Clinic at UK, but Riley said no.

“I’m stubborn,” she said, with a twinkle in her eye.

But by April of this year, 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.

Priscilla Riley with her pastor, Anthony Lovett, and Dr. Leventhal
Priscilla Riley with her pastor, Anthony Lovett, and Dr. Leventhal

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.

‘I feel so much better’

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.

“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.

Months after her surgery, she continues to do 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 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.”

Priscilla Riley talks with Dr. Andrew Leventhal
Priscilla Riley talks with Dr. Andrew Leventhal.

Learn more about our Adult Congenital Heart Disease ProgramSee more stories from 2018 State of the Heart

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