Transplant patient’s heart and head are in the game

By Maureen Gilmer, Riley Children’s Health senior writer, mgilmer1@iuhealth.org

Ja’Karr Ashley is four months out from a heart transplant, and he’s hitting the treadmill at a good clip during cardiac rehab at the Riley Outpatient Center.

Ja’Karr, 12, is the first patient to go through the pediatric outpatient cardiac rehabilitation program, designed for children and teens recovering from heart transplant surgery. This medically supervised program helps patients build strength and improve fitness in a safe and encouraging environment.

Each session combines exercise, education and emotional support, with activities tailored to the patient’s interests. By incorporating games, sports and fun exercises, the rehab program is set up to be a positive and motivating experience.

Ja’Karr has already finished the physical therapy/coordination part of his rehab through COLTT (Center of Life for Thoracic Transplant) at IU Health Methodist Hospital, but this next phase of recovery is to help him get back to a normal life, back to keeping up with friends.

Leading him through the twice-weekly workouts in the ROC is Lily Hess-Vittetow, exercise physiologist for Riley.

“He’s doing great,” she said as she monitored Ja’Karr’s pace on the treadmill during a recent session. He is hooked up to an EKG so a nurse in the room keeps tabs on his heart function during the hourlong session.

“He’ll be running on the treadmill soon.”

As it is, Ja’Karr alternates between several minutes at a moderate pace and a few minutes at a slower pace. All the while, Hess-Vittetow checks in with him on his level of fatigue while also monitoring his blood pressure and encouraging him to drink from his bottle of Gatorade.

“When he started, he was going 1.7 miles per hour, and now we’re up to 3 miles per hour with an incline,” she said. “He’s making a lot of progress.”

That’s what Ja’Karr’s cardiologist, Dr. John J. Parent, likes to hear.

“Patients undergoing heart transplant often have been sick for some time, and the recovery after a surgery and hospitalization like that can take a tremendous toll on a patient’s body and mind,” he said.

Add to that, they are limited in their ability to go out in public, to school, and play outside for three to six months after heart transplant to prevent infection and rejection, which can impede their mental and physical recovery.

“This new program has offered a creative way to overcome those barriers and improve patients' physical and mental capacity and set them up for long-term success,” Dr. Parent said. “I think the already early success of this program is largely due to the person who is on the front lines daily, Lily Hess.”

The cardiologist said he has watched a few of the sessions and has seen Ja'Karr light up and heard him laughing from down the hallway.

Thanks to patient-focused activities and games, kids like Ja’Karr are encouraged to be partners in their own care and to develop those heart-healthy habits that will carry them into adulthood.

In his recent session at Riley, Ja’Karr moved from the treadmill to muscle strengthening, using weights and alternating through sets of lunges, squats and bicep curls.

Because Ja’Karr loves sports, the workout also builds in a bit of play, with controlled sessions of basketball and soccer, along with tossing a football for good measure.

“The goal is to strengthen his heart after transplant,” Hess-Vittetow said. “We want him to be able to keep up with his peers. That’s his goal.”

Ja’Karr, who charmed the Riley team while he was inpatient for six months, is fairly quiet during this session but does whatever is asked without complaint.

“He’s my best cardiac rehab patient,” Hess-Vittetow said with a laugh. “Number one out of one. You set the bar really high,” she joked with Ja’Karr.

An education component to the rehab program focuses on nutrition, sleep, infection control and exercise at home. In their next session, Hess-Vittetow planned to work with Ja’Karr and his mom, LaTasha, on how to shop for healthy foods, how to read nutrition labels and tips for cooking healthy meals.

Being the parent of a heart transplant patient is filled with challenges, but Ja’Karr’s mom is pleased that her son is doing well in the rehab program, even though it means more trips to Riley every week.

“He enjoys it, and it keeps him active,” she said.

The outpatient cardiac rehab program at Riley is designed for patients ages 8 and up. It generally lasts about eight weeks.

Tom Harlow, cardiovascular service line administrative director for Riley Children’s Health, said the addition of the outpatient cardiac rehab service enhances the continuum of care provided to patients following their hospital admission.

“The expected clinical outcomes include improving long-term health post-heart transplant, maintaining or improving exercise capacity and quality of life … and reducing the frequency of hospitalizations and cost of care,” he said.

Dr. Parent is optimistic that it will do all of that and more.

“In addition to improving physical health, the program focuses on boosting mood, confidence and emotional well-being to help patients return to an active, fulfilling life,” he said. “I think we will see the positive benefits of this in our patients, not just immediately, but for years after.”

Riley is home to Indiana’s only pediatric cardiac rehab program, both inpatient and outpatient.

U.S. News & World Report ranks Riley’s pediatric heart program among the best in the nation.

Photos by Mike Dickbernd, IU Health visual journalist, mdickbernd@iuhealth.org

Previous stories:

Ja’Karr’s smile shines bright as he waits for a new heart - A 12-year-old Fishers boy born with a serious heart defect is on the transplant wait list.