Heart Transplant | Long-Term Outlook

What is the long-term outlook following a heart transplant?

Living with a heart transplant is a journey, and each child and every transplant is different. Following the operation, the transplant team will see the child for frequent follow-up visits, initially once or twice per week in the Cardiology Clinic. Generally, after the first few months, this schedule will diminish. Usually, around one year following transplant, the frequency changes to every three to six months.

Most children will return to school approximately 10 to 12 weeks after surgery. However, many require special services, such as tutoring, in particular, children who had complex congenital heart disease — a risk factor for learning problems.

The Boston Children's Hospital Cardiac Neurodevelopmental Program supports and works with children with heart disease. As a child settles into school, we closely monitor learning struggles. We can assist in obtaining educational assessments and interventions that can enhance a child’s academic achievement.

Aaron, 10, received a heart transplant at just 1 year old. #becauseofadonor, he was able to get his black belt.

Physical activity

We want and expect heart transplant recipients to live a fulfilling and productive life similar to other children their age. Before heart transplant, a child may not have been active; however, the activity level post-transplant will gradually increase.

Physical therapy will begin at the hospital, and an exercise program will be created that will integrate a child’s needs, goals, activity preferences and home situation.

Warming up is very important after a heart transplant, as the heart now needs a few extra minutes to increase its rate. At the time of a child’s heart transplant, the main nerves to the heart are cut. This is known as denervation. Therefore, the brain does not directly control the heart rate. The body’s hormones that normally circulate in the blood system have less control over heart rate in a transplanted heart.

Medication adherence

Anti-rejection medications help the immune system accept the new heart. These medications must be taken for the lifetime of the transplanted organ.

Medication compliance is a major concern, particularly for teenagers as they seek more control of their lives and because of the temporary side effects caused by the drugs. Non-adherence may lead to rejection and loss of the heart, so it’s critical that medications are always taken as instructed, without missing doses.

The transplant coordinators and nurses work with teenagers and families to develop a medication schedule that fits the normal routine at home and creates a pattern that is easy to follow.

Nutrition

A nutritionist will help design a diet plan that promotes sound nutritional health and minimizes possible nutritional side effects of immunosuppressant therapy. Immunosuppressant medications can cause weight gain, salt retention, potassium loss, high blood sugar and high blood pressure.

Designing a diet plan begins with obtaining, creating and reviewing a nutrition history and determining a child’s ideal body weight. Using this information, a well-balanced diet is recommended that includes an appropriate number of calories, low sodium and fats.

Growth and development following heart transplant

A child’s physical growth will be checked frequently, and we will make suggestions about diet changes or increasing calories as needed. We want your child to grow along his or her own growth curve following transplant.

We will also be carefully observing your child’s development at regular intervals and may make suggestions for additional services, such as early intervention and physical therapy, to enhance development. Although transplantation makes many extra demands on children, most children seem to adapt fairly well with help and support.