Life after Transplant

Pulmonary Rehabilitation (Rehab)
Although your child has a new set of functioning lungs, he or she will need to continue in a rehab program to promote muscle strength and endurance. A unique program is tailored specifically for each child. Initially your child will need to be seen in the rehab clinic several times each week to adequately develop a home exercise program.

Nutrition
If your child was eating poorly before the transplant, it may take some time before he or she will reach an optimum state of well being. (It is not uncommon for some children to lose as much as 10 pounds).  After the transplant, your child’s physician may order additional nutritional support in the form of liquid supplements. As long as your child is eating a reasonably balanced diet containing foods from the food guide pyramid (meat, bread, dairy, fruits and vegetables), then you know he has a healthy diet. Remember a number of foods can be substituted for ones your child dislikes. A well-balanced diet with enough calories and a standard multi-vitamin (e.g. Flinstone’s, Bugs Bunny) may be all your child needs.

Oral and intravenous steroids may cause your child to have an increased appetite and weight gain. Do not allow your child to get into the habit of overeating. As the steroid dose decreases, increased appetite should become less of a problem.

A few points to remember about meals and snacks:

• Children often eat better when they are not urged or tired.
• Usually, small children prefer small portions with second helpings rather than one large serving.
• Suggestions to increase your child’s intake of high calorie foods include offering nutritious snacks such as raisins, cheese and granola, adding non-fat milk to other foods (whole milk, casseroles, puddings) and generously using foods such as mayonnaise, creamed sauces, dressings, margarine/butter, cream cheese and peanut butter.

Activity
Your child can return to his or her normal activity level almost immediately. However children should avoid contact sports and vigorous exercise for at least three months after the transplant surgery. Many children have weak muscles due to chronic lung disease. After transplantation you should notice a gradual improvement in muscle strength and endurance. Participation in a pulmonary rehabilitation program both before and after transplantation is key to improving muscle strength.

Dental Care for Your Child
All children should receive regular preventive dental care after the primary teeth are in place. More frequent dental visits may be required to prevent gingival hyperplasia (overgrowth of the gums), especially in children who are taking Cyclosporine or Nifedipine. Inform the dentist of your child’s transplant history and obtain antibiotics prior to routine (teeth cleaning) or invasive procedures (filling a cavity). Your dentist can consult with the transplant office regarding the protocol.

Sun Exposure
Because your child is taking steroids, their skin will be more sensitive to the sun. Apply an effective sun screen lotion on all exposed areas. The sunscreen should have a minimum sun protection factor (SPF) of 15. Reapply the lotion frequently if they are swimming. Avoid exposure to the sun between 10 a.m. and 2 p.m.

Medical Alert
A medical alert application will be provided prior to discharge. It is very important for your child to wear a medical alert bracelet or necklace at all times.

Immunizations
Young children will need to continue to receive regular immunizations. They should not receive live virus vaccines such as oral polio (OPV), varicella (chicken pox) or measles, mumps and rubella (MMR). A killed version of the polio immunization (IPV or Salk vaccine) administered by injection is available. Because oral polio is shed in the stool, brothers and sisters in the same household should also be given the injectable, killed version of the polio immunization. If other children in the same house receive other live virus vaccinations; they should be isolated from the transplant recipient for two weeks.

Childhood Illnesses
Many children have not had chicken pox prior to transplantation. Chicken pox can be a serious illness for immunosuppressed children. Chicken pox is spread through the air or by close contact with someone who has the virus. Symptoms often include a fever and a splotchy rash on the trunk that spreads downward. The rash consists of small watery blisters with red rings around them. A person with chicken pox is contagious 1-2 days before the rash develops. The contagious period lasts until all of the pox have developed a scab. If your child is exposed, he/she may develop chicken pox from 14-21 days after the exposure.

If your child is exposed to chicken pox inform the transplant office within 2-3 days. Your child will receive a zoster immune globulin (VZIG) injection to prevent or lessen the severity of the chicken pox. Children who break out with chicken pox must be treated with 10 days of IV medication (Acyclovir), so contact the transplant office immediately if you suspect this childhood disease. The shingles virus that adults and some children get is the same as the chicken pox virus. It should be treated in the same way.

Behavioral Changes
It is not unusual for children to become very demanding after you return home. Your child probably received a lot of attention during the illness and hospitalization. It may take some time before your child realizes he does not need to be the center of attention. Proper limit setting and appropriate disciplinary measures should help your child adjust.

After transplantation your child will have a higher energy level. They may behave aggressively to act out feelings of fear, frustration or loss of control experienced in the hospital. Some children have fears about the incision and worry about their body not being intact. To help deal with fears medical play in the hospital and at home may be helpful.

Return to School and Daily Routine
During clinic visits, parents will be advised when to send children back to school. In the meantime, contact the school and obtain home tutoring. Discuss with your physician the appropriate activity and return to physical education and sports after transplantation. Families with younger children will be referred to county Infant and Toddlers programs for developmental support. At the time of discharge, avoid large crowds at the mall and grocery store for several months.

The Future
The field of transplantation has grown tremendously over the last 10 years. Every day new discoveries are made about better surgical techniques and new immunosuppressant medications. The expectation is that all of your children will live a full life.