Adult Congenital Heart Program

People who had heart issues as children now have a program dedicated to their care at UK’s Gill Heart & Vascular Institute.

Andrew Leventhal, MD, PhD, started the Kentucky Adult Congenital Heart (ACH) Program in early 2016. It currently follows some 250 patients, a number that is growing through physician referrals.

The program is listed online as an official adult congenital heart site, which helps patients and doctors find it.

Spreading the word

Megan Frost, MSW, CSW talks to an ACH support group.
Meghan Frost, MSW, CSW, leads a discussion group.

Leventhal travels throughout Central and Eastern Kentucky to tell physicians about the program, and he hopes to establish a satellite clinic in West Virginia. UK HealthCare’s ACH program is the only one in Central and Eastern Kentucky and West Virginia.

Adult congenital heart programs are relatively new because for many years, children with congenital heart problems did not live long. “If you were a congenital adult specialist 50 years ago, you wouldn’t have many patients because kids didn’t make it to adulthood,” said Leventhal. Now because of improvements in surgical procedures and care by pediatric cardiologists, “95 percent make it to 18 years old,” said Leventhal. Many live decades beyond.

Leventhal’s message to other physicians is that these patients must be monitored closely and followed by specialists who understand their physiology is not the same as that of a person who develops heart problems as an adult.

Adult congenital heart patients have other challenges. As youth many were told, incorrectly, that they were cured.

“A lot of these patients will tell you that just going to the doctor as an adult gives them severe anxiety,” said social worker Meghan Frost, MSW, CSW, who works with patients in the program. She teaches these patients techniques to relieve anxiety and sometimes recommends therapy. Frost can also supply gas and food vouchers to those on limited budgets who qualify for assistance.

Keeping close tabs

To ensure they receive proper care, all adult congenital heart patients in UK’s program are asked to carry Leventhal’s card and instruct any doctor who treats them — especially in emergency departments — to call him to discuss their case.

Patients are also instructed to call or text nurse coordinator Jessica Turner, RN, with any questions or concerns.

“At 9 on a Saturday morning I got a message from a patient who asked, ‘Is there a pill for chest pain?’” said Turner. “I got her into the emergency department and Dr. Leventhal saw her. We are like a mother hen.”

Support group launched in May

Megan Frost, MSW, CSW, leads a support group.
Meghan Frost, MSW, CSW, a social worker in case management, works with congenital heart patients and notes that many found their earlier experience as children with heart disease to be traumatic — an experience that still causes them anxiety.

When these adults were sick as children, “we didn’t have the big shiny children’s hospitals that we have now; it was a traumatic experience,” said Frost. “That trauma causes anxiety as they get older. They also no longer have their parents taking care of them, making sure they are getting the follow-up care they should.”

After calling more than 250 patients, Turner had about 25 people attend the first meeting of a new ACH support group in May 2017. Some patients traveled several hours to attend; several shared phone numbers so they can text and call one another.

Being able to talk to others who have shared a similar experience is important to this patient population. The group intends to meet on the first Monday of each month unless it is a holiday.

Page last updated: 8/7/2017 9:42:44 AM