Pediatric Heart Transplantation:
A Practical Parent Guide

PART 8: FOLLOW-UP CARE AT HOME

There are some special things to be aware of when you go home.  This section provides practical advice around approaches to a number of areas including medications, infection, immunizations, nutrition, exercise and activities.

MEDICATION MANAGEMENT TIPS

• The transplant coordinators and your child’s nurses in the hospital will work with you and your child to develop a medication schedule that fits your normal routine at home.  Developing a system using charts or a sign on the refrigerator often helps at first.
  
  
• Many of the medications are not available at all pharmacies.  Make sure you have enough medication at home and get prescriptions filled early so you don’t run out.

• If you or your child misses a dose of any of the medications, for any reason, notify the heart transplant team coordinator or your transplant physician.

• The safest rule is never to give your child any new medicine until you discuss it with the transplant team first.  Many medicines interact with the transplant medicines and may increase side effects or make the transplant medicine weaker so the child is at greater risk of rejection.

• The following medicines are usually safe to give your child (used to treat cold symptoms, minor aches and pains). 

• Acetaminophen (Brand name: Tylenol) for fever or pain at normal doses for age and weight. 
• Dextromethorophan preparations (Brand names: Robitussin DM, Triaminic DM) can be given for coughs at normal doses for age and weight.
• Benadryl (Diphenahydramine) can be given at normal doses for age and weight.

• Avoid Ibuprofen (Brand names: Advil, Motrin, Aleve or similar drugs).  These are non-steroidal anti-inflammatory drugs (NSAID) that are commonly given for pain or fever.  They should not be given unless you discuss it with the heart transplant team coordinator or cardiologist.

INFECTION PRECAUTIONS

As we have outlined, your child has less ability to fight infection so a greater awareness about exposure to infections is important.  This is especially true soon after your child’s transplantation.  Precautions include:

• Avoid exposing your child to someone who is ill with fever, flu, colds or other symptoms as much as possible.

• Avoid indoor crowded places (such as stores, movies, restaurants, churches) in the first 8-12 weeks after transplantation to decrease exposure to infection.

• Your child will be kept out of school and day care for the 8-12 weeks after transplant.  We will work with you to discuss the timing of your child’s return.

• Buildings under construction or destruction should be avoided.  Rare infections can become airborne during construction and destruction.

• If your child has NOT had chickenpox, exposure to this illness should be avoided.  Your child will need a medicine within a few days of exposure to chickenpox in order to prevent your child from getting the infection.  Notify the school, relatives, neighbors, parents of your child’s friends, etc. about the importance of avoiding chicken pox exposure and notifying you if your child has been exposed.  Contact us immediately if your child might have been exposed.  If you have any questions, call the heart transplant coordinator or cardiologist.

• When your child gets cuts or scrapes –cleanse the wound and apply a clean dry dressing.  If healing is slow and/or fever, pain, swelling, redness or any sign of infection develop, your primary care physician should be called.

• Good dental care is very important.  Children should brush and floss daily and see the dentist regularly.  Your child will need an antibiotic before routine dental cleaning visits.  Contact the heart transplant coordinator to arrange for this medication.

• The number one way to prevent transmission of infection is hand washing.  This cannot be stressed enough.  Hand washing is essential in the prevention of infection. As a rule hand washing should occur after toileting and before any meals.  The use of a hand sanitizer (Purell) is also recommended.

IMMUNIZATIONS

Children receiving immunosuppressive drugs are NOT given certain vaccines (“live” vaccines).  We rely on “herd immunity” (or immunization of the general population) to protect your child after transplant from certain infections.

Live vaccines include:

• MMR (measles, mumps, rubella)
• Varicella (chicken pox)

All other killed vaccines (IPV, DTAP, Pneumococcal, HIB, Hepatitis A and B vaccines, Meningitis vaccine, HPV, tetanus booster, influenza) can be given on schedule once the patient is 3 months post transplant.

Family members can receive live vaccines

Flu vaccines are recommended on an annual basis for transplant patients and their families.

Make sure to discuss any other immunizations with your heart transplant team coordinator.

NUTRITION

Our nutritionist will work with you and your child to design and follow 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 a nutrition history and determining your child’s ideal body weight.  Using this information, a well balanced diet is recommended that includes an appropriate amount of calories and is low in salt and fats.

Important diet principles following heart transplant include:

• Achieving or maintaining ideal body weight
• Limiting intake of sugar and concentrated sweets
• Reducing the fat and cholesterol content in diet
• Limiting intake of salt. 

Our nutritionist will work with you in the hospital to review these principles, plan menus and answer questions.  The nutritionist will help you develop and extend these guidelines for a healthy diet into home.

PHYSICAL ACTIVITY

We want and expect your child to live a fulfilling and productive life similar to other people his or her age.  Before heart transplant your child may not have been able to, or have felt like, being active.  However, your child will now be able to gradually increase his or her activity to a level similar to most of their peers. 

Physical therapy will begin while your child is in the hospital.  A physical therapist will work together with you and your child to develop a program.  This program will integrate your child’s needs, goals, activity preferences, and home situation.

If your child is old enough to follow an exercise program, he or she will be instructed in an individual exercise program to be done on a regular basis.  In general, an exercise program consists of a warm-up, an aerobic activity, and a cool down.  A younger child will be involved in a developmental stimulation program with the physical therapist.  You will be taught activities to help your child attain the usual developmental milestones.

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 your child’s heart transplant, the main nerves to the heart had to be 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 more control over heart rate than in non-transplanted heart.   What does this mean practically?

• Your child’s resting heart rate is faster than normal. 
• Your child’s heart rate will speed up and slow down more slowly with exercise. 
• Your child will need to “warm up” prior to vigorous exercise and then “cool down” after exercise. 
• Your child will eventually be able to participate in the same physical activities, games and sports as other people their age.

The transplant team and the physical therapist will review this with you and your child as a program is developed that enhances your child’s physical capabilities. 

GROWTH AND DEVELOPMENT

Our goal is to allow your child to continue to grow and develop similarly to other children of the same age and to participate in age appropriate activities.  We try to keep restrictions to a minimum and to adapt their medical needs to a child’s normal schedule and activities.

Your 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/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 (early intervention, physical therapy, etc) to enhance their development.  Though transplantation makes many extra demands on children (hospital stays, blood tests, clinic visits, medicines), most children seem to adapt fairly well with all of our help and support and, most especially, your love, concern and support for them.  The majority of our youngsters have demonstrated good emotional and social functioning after their heart transplant.  Youngsters clearly have the capacity for healthy psychological adjustment following heart transplantation.  Our social worker and child psychiatrist may be helpful in assisting you, your child and family to cope with the stresses of transplantation and help you to meet your individual needs.  Their assessments are a routine part of our ongoing follow-up care.

Following heart transplantation, all of our children have returned to school fulltime.  However, many have required special services (e.g., tutoring).  In particular, these have been children who had a complex congenital heart disease (CHD).  The presence of CHD is a risk factor for learning problems.  These problems often pre-date their transplantation.  As your child settles into school, we will want to closely monitor your child for learning struggles.  We can assist you in obtaining educational assessments and interventions that can enhance your child’s academic achievement.

EXPOSURE TO SUN

Your child needs to be protected from exposure to the sun.  Sunscreen (SPF 30), hats and tee shirts should be used when outside for any period of time in the sun.  The risk of skin cancer is higher for patients on chronic immunosuppressant medications.

PETS

We recommend NO NEW pets for 6 months after your child’s transplant.  Please discuss your plans for NEW pets with your heart transplant team coordinator or cardiologist.  Due to the higher risk for infection, your child should not be cleaning pet cages or changing litter boxes.

TRAVEL

Your child and family can travel after transplant.  Because of the complex follow up, we ask that your family not make any travel plans for the first 3 to 6 months after the transplant.

WHEN TO CALL THE HEART TRANSPLANT TEAM

• For fever greater than 38 (101.3) for more than several hours.

• For vomiting and/or diarrhea interfering with the patient taking their regular medicines.

• For difficulty in breathing, increased respiratory rate, productive cough, fatigue and poor appetite.

• For cuts and bruises that do not heal normally or appear infected.

• For complaints of chest pain, fainting or feeling of abnormal or fast heart rate.

• For swelling of the eyes, hands or feet.

• For exposure to chickenpox if your child is not immune.

• Before starting any new medication.

• When medication doses are missed.

 

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