Pediatric Lung Transplantation | For Parents

Why is my child prone to infections?

The anti-rejection medications your child takes to prevent their new lungs from being rejected are known as immunosuppressants and suppress the patients immune system.

The immune system has a twofold purpose:

• Prevent infection.
• Recognize and destroy foreign materials

The three main immunosuppressant medications are cyclosporine, prednisone and azathioprine (Imuran). More detailed information on each agent will follow. Your child will take anti-rejection medications everyday after the transplant for the rest of their lives. Other daily medications are designed to decrease the chance of infection. The following instructions will help your child to reduce infections:

• Good hand washing by himself and those with flesh-to-flesh contact.
• Check surgical incision daily until well healed.
• Avoid contact with persons with infections (i.e.: colds, flu).
• Clean and dress cuts or scrapes immediately.
• Notify the transplant nurse, or doctor, if you have any signs or symptoms of an infection/cold (i.e. cough, vomiting, fever, diarrhea, a cut with redness).
• Wash raw fruits and vegetables well.
• Wear gloves when gardening or working with dirt, and clean hands and nails afterward to avoid fungal infections.
• Avoid buildings under construction and general construction areas (such areas may carry fungal spores). Wear a mask if exposure is unavoidable.
• Avoid sharing drinking glasses/utensils during meals.
• Wear a mask if in crowded situations in the first weeks after transplant and after major increases in immunosuppression.
• Hay may carry fungus, so hayrides are not a good idea.

Colds

At some point your child will probably get a "cold". Colds are caused by viruses and are spread most often by contaminated hands (i.e. by wiping your nose or eye and not washing hands). Because a cold is caused by a virus, it cannot be cured by antibiotics. However, sometimes a bacterial infection will occur as a complication of a cold which may be treated with an antibiotic. Hints to help prevent a cold include:

• Eat and sleep properly and get plenty of exercise to keep resistance up.
• Have your child wash his hands frequently, particularly when around people with colds.
• Have your child keep his hands away from their nose, eyes, and mouth.
• Use disposable tissues, not handkerchiefs, to reduce the spread of viruses to others.

If your child does get a cold, the following home treatment will help:

• Get extra rest.
• Drink plenty of fluids, particularly warms fluids, which will help reduce congestion.
• Decongestants may help (check with the transplant nurse before taking these).
• Pay attention to signs of lower respiratory tract involvement, signaled by chest cough, lowered FEV1, or lowered pulse oximetry number.

If your child has the following signs or symptoms, you should call the transplant nurse, or your local doctor:

• Fever
• Cough with colored sputum or persistent cough
• Colored nasal drainage
• Sinus pressure or headaches
• Sore throat
• Swollen glands
• Trouble breathing
• Diarrhea or vomiting
• Lowered FEV1 or lowered pulse oximetry number
• Anything else that seems abnormal

If you have any questions or just not sure about your child’s symptoms, please call. It’s always better to double check with us.

 Viruses

The viruses of greatest concern after transplant due to possible reactivation or difficulty in control include:

Hepatitis A, B, C: note vaccines now available for both Hepatitis A & B.

Human Immunodeficiency Virus (HIV): the cause of AIDS. With current screening of the blood supply, HIV is very rare in pediatric patients but all transplant patients are screened.

Herpes Family Viruses:

• Herpes Simplex: the cause of recurrent "cold sores" on the lip; with immunosuppression, herpes can become more widespread. Responds to Acyclovir treatment.
• Varicella(chicken pox): varicella vaccine now available; more serious in immunosuppressed patient; responds to acyclovir treatment.
• Epstein-Barr Virus(EBV): the cause of infectious mononucleosis; primary or first time infection after transplant may cause a serious complication called Post Transplant Lymphoproliferative Disease (PTLD). We pay close attention to your child’s EBV status before and after transplant.
• Cytomegalovirus(CMV): very common and usually mild in normal people but can cause pneumonia or widespread disease in an immunosuppressed patient, especially if primary infection occurs after transplantation; responds to gancyclovir. We pay close attention to your child’s CMV status prior to transplant and also after transplant. If your child or their donor are CMV positive, your child will be on IV Gancyclovir for 6 weeks after transplant. This is prophylactic treatment against CMV disease.

Cold Sores (Herpes Simplex)

These sores look like tiny water blisters on the lip or face. You can use blistex or similar products on these. If they occur in the first months after transplant, or seem to be extending, oral acyclovir should be prescribed.

Chicken Pox (Varicella Zoster)

Chicken pox can be life threatening after transplant. If your child breaks out with chicken pox, he should see a physician within 12 hours and begin treatment with intravenous or oral acyclovir.

Stomach or Intestinal Virus

Since cyclosporine is so vital to the transplant patient’s health and since it is poorly (30%) absorbed in a normal gastrointestinal tract, vomiting or diarrhea may interfere with normal cyclosporine absorption. Contact the transplant nurse or your doctor for specific instructions.