Medicines for After a Pediatric Heart Transplant

After a heart transplant, your child will take many medicines for the rest of his life. These medicines are very important. They will help keep your child from rejecting his new heart and keep him in the best possible health.

As time passes, your child’s cardiologist may decide that some of the medicines may be decreased or stopped. Until your doctor makes any changes, give your child all of his medicines on a regular schedule. Never give your child any over-the-counter medicines or prescription medicine from other healthcare providers until you check with the Children’s Heart Transplant coordinator.

  • Helpful hints about your child's medicine
  • Medicine refills

Examples of medicines your child may take after a heart transplant:

Immunosuppressants

CYCLOSPORINE/SANDIMMUNE®, NEORAL®, GENGRAF®
Purpose:
Helps keep your child’s body from rejecting the transplanted heart.
How to Give: Liquid cyclosporine has an oily base and strong taste. Your child can take it by itself or mixed with apple juice, orange juice or milk.

  • If you use a syringe to give the medicine to your child, give it first. Then draw up milk or juice in the same syringe to give to your child. This ensures that all medicine is given.
  • This medicine also comes in a capsule (pill) form. The capsule can be swallowed like any other capsule.

Possible Side Effects: Increased blood pressure; swollen gums; upset stomach; slight tremors or shaky hands; excessive hair growth; increased risk of infection; and low magnesium levels
Special Notes:

  • Your child will take this medicine for the rest of his life.
  • Give this medicine the same time and way each day. It may be given with or without food, as long as you do it the same way each day.
  • Do not change the way your child has been taking cyclosporine without first talking to the Children’s Heart Transplant coordinator.
  • Do not change this drug unless your child’s doctor or the Children’s Heart Transplant coordinator tells you to change it.
  • Do not store it in the refrigerator.
  • The liquid form of this medicine is only good for a certain amount of time. Check with your pharmacy for more details.
  • Children absorb cyclosporine into their blood at different rates. Blood tests are done at the hospital to check the level of cyclosporine in your child’s blood. The dose may be changed based on your child’s results. On days of the blood tests and biopsies, bring your child’s medicines to the hospital to give after the lab tests and heart biopsies.
  • If your child takes antacids, do not give them within two hours of cyclosporine because they affect the absorption rate of the drug.

TACROLIMUS/PROGRAF®
Purpose: Helps keep your child’s body from rejecting the transplanted heart.
How to Give: Give every 12 hours.
Possible Side Effects: Mouth sores, diarrhea, diabetes, Post-Transplant Lymphoproliferative Disease (PTLD)

AZATHIOPRINE/IMURAN®
Purpose:
Helps keep your child’s body from rejecting the transplanted heart.
How to Give: Give it with other morning medicines. It comes in 50 mg tablets or in a liquid form.
Possible Side Effects: Nausea, vomiting, diarrhea, ulcers, easy bruising, liver problems, decreased ability to fight infection and mouth sores.
Special Notes:

  • The liquid form is good for a limited amount of time—check with your child’s pharmacist.
  • It may be given with or without food.
  • Store the liquid in the refrigerator.
  • It can cause the number of white cells to drop. White blood cells fight infection. Your child’s doctor may stop azathioprine/Imuran® if your child’s white blood cell count falls too low.

MYCOPHENOLATE MOFETIL/CELLCEPT® , MYFORTIC®
Purpose:
Helps keep your child’s body from rejecting the transplanted heart.
How to Give: Give it every 12 hours.
Possible Side Effects: Nausea, diarrhea, diabetes (blood sugar problems), weakness and tremors

SIROLIMUS/ RAPAMUNE®
Purpose:
Helps keep your child’s body from rejecting the transplanted heart.
How to Give: Give it once a day.
Possible Side Effects: Nausea, diarrhea, acne, sleeping problems, wound healing problems, increased triglycerides (a type of fat), mouth ulcers, bone aching and pneumonia (a lung infection).

PREDNISONE
Purpose:
A steroid used with other medicines to keep your child’s body from rejecting the transplanted heart.
How to Give: Comes in a pill or liquid form. Your child may swallow or chew the pill, or you can crush it and add it to a small amount of juice.
Special Notes:
Do not stop or change this medicine unless your child’s doctor tells you to do so.

  • Give with meals to decrease stomach problems.
  • Your child should use sunscreen when in the sun.
  • Help your child control his eating by giving him small, healthy meals often during the day.
  • Control your child’s access to food—especially when he is first on prednisone. This is when he will feel most hungry.

Blood Pressure Medicines

AMLODIPINE/ NORVASC®
Purpose:
Used to treat high blood pressure.
How to Give: Comes in tablets. Some pharmacies can make this drug into a liquid, if you ask them.
Possible Side Effects: Low blood pressure, headache, and swelling of the feet, ankles and gums.
Special Note: If prescribed once a day, you may give it to your child in the morning or in the evening.

NIFEDIPINE/PROCARDIA®
Purpose:
Used to treat high blood pressure. (cyclosporine, tacrolimus and steroids may raise blood pressure).
How to Give: Comes in capsules or extended release tablets (Procardia XL).
Possible Side Effects: Rosy- or red-colored skin, low blood pressure, swelling of the legs, headache, and dizziness or a light-headed feeling especially when standing quickly from a seated position.
Special Notes:

  • Do not crush or break tablets.
  • Capsules may be punctured, and you may put solution under your child’s tongue.
  • For smaller doses, follow the advice of your child’s nurse or doctor.

FUROSEMIDE/LASIX®
Purpose: Used to remove extra fluid from your child’s body.
How to Give: Comes in tablets or liquid. The tablets may be swallowed, chewed or crushed and mix with juice.
Possible Side Effects: Weakness, dizziness, muscle cramps and nausea.

Anti-infective Medicines

MYCOSTATIN/NYSTATIN
Purpose:
Used to treat or prevent mouth sores and thrush (a yeast infection in the mouth).
How to Give: Give to your child after meals and at bedtime.
Special Note: Your child may “swish and swallow” the liquid. It is often used during the first month after the heart transplant and then stopped unless your child has thrush.

TRIMETHOPRIM-SULFAMETHOXAZOLE (TMP-SMZ)/ BACTRIM®
Purpose:
Used to prevent pneumocystis pneumonia and toxoplasmosis.
How to Give: Comes in tablet or liquid form. It is usually given three times a week on Mondays, Wednesdays and Fridays for one year post-transplant. The Children’s Heart Transplant coordinator will advise you when to stop using this medicine. It may be given in the morning or in the evening.

Other Medicines

RANITIDINE/ZANTAC®
Purpose:
Used to prevent and treat stomach ulcers.
How to Give: Comes in tablets or liquid. It may be given with other morning and evening medicines.
Possible Side Effects: Dizziness, headache, nausea and vomiting.
Special Note: This medicine is stopped once your child’s prednisone dosage is stopped. The Children’s Heart Transplant coordinator will advise you when to stop giving it to your child.

MAGNESIUM OXIDE/MAG-OX®
Purpose:
Used to increase magnesium levels (cyclosporine and tacrolimus lower magnesium levels).
How to Give: Comes in tablets. Your child may swallow or chew the pill, or you may crush it and add to a small amount of juice.
Possible Side Effects: Diarrhea, nausea and stomach pain.

BABY ASPIRIN
Purpose:
Helps keep blood clots from forming.
How to Give: Comes in 81 mg tablet form. Your child may crush, chew or swallow the tablet.
Possible Side Effects: Stomach upset, bruising and bleeding gums.
Special Note: Give your child baby aspirin with food or milk to reduce stomach upset. Stop this medicine one week before you child has any surgical procedures. Restart it when your child’s doctor advises you to do so.

PRAVASTATIN/PRAVACHOL®
Purpose:
Used to lower cholesterol and can help prevent heart disease.
How to Give: Comes in tablets. You may crush this pill and mix with water, juice or pudding.
Possible Side Effects: Muscle and joint pain and changes in liver function.
Special Note: Call the Children’s Heart Transplant coordinator if your child has any muscle or joint pain. Your child’s labs will be checked often to check liver function.

Treatment of Rejection

METHYLPREDNISOLONE/SOLU-MEDROL®
Purpose:
A steroid used to treat moderate and severe episodes of rejection of the transplanted heart.
How to Give: This medicine is given through an I.V., once a day for three days. Your child may receive it as an outpatient in the heart transplant clinic or through a home healthcare agency.
Possible Side Effects: Headache, sensitivity of the eyes to the sun, weight gain, mood swings and shortness of breath.
Special Notes: Report any breathing trouble your child may have. Your child will need a repeat heart biopsy one week after stopping treatment to make sure the rejection has resolved.

Helpful Hints

  • Know the medicines that your child is taking and their side effects.
  • Keep a list of your child’s medicines with you at all times.
  • Tell the Children’s Heart Transplant coordinator if your child has any side effects.
  • Keep records of what medicines your child is taking, including the time and dose.
  • Talk to the Children’s Heart Transplant coordinator before adding, stopping or changing any medicine.
  • Keep medicines in a dry place, away from heat or light, and out of the reach of children.
  • If your child misses a dose, do not double the dose, but give the next dose as directed.
  • If your child misses two doses, call the Children’s Heart Transplant coordinator.

Time to give medicines:

  • Ask your child’s doctor or pharmacist for the best time to take each medicine.
  • Call the Children’s Heart Transplant coordinator or your doctor if your child vomits the medicine less than 30 minutes after it was taken.

Ways to give medicines:

  • Check with your child’s pharmacist or doctor to find out if your child is taking any time-released medicine. Some time-release medicine cannot be crushed or opened.
  • Some medicine can be crushed and put in a small amount of food (applesauce, ice cream, juice or flavored syrup). Use a small amount because your child may not want to finish all the food.
  • Some medicine can be crushed and put in a gel cap for older children who can swallow a capsule.

Other medicines:

  • Some over-the-counter medicine can change the effects of prescription medicines. Be sure to keep track of all medicines given to your child.
  • Ask the Children’s Heart Transplant coordinator before you give your child any medicine for coughs or colds.
  • Call the Children’s Heart Transplant coordinator if a pediatrician or other doctor starts any medicine. The pediatric heart transplant team needs to keep a complete record of all of your child’s medicine and illnesses.
  • If you take your child to a local doctor or emergency center, ask the staff to call the Children’s Heart Transplant coordinator. This will help your child’s doctor deliver the best care by having a complete picture of his health
  • Do not give your child any herbal medicine, teas, nutritional supplements or any other natural or herbal treatments without checking with your child’s heart transplant doctor or the Children’s Heart Transplant coordinator.

If you have any questions about any medicines or treatments, please call the Children’s Heart Transplant coordinator.

Medicine Refills

  • Call your pharmacy one week ahead to refill your child’s prescriptions. This ensures the pharmacy has enough medicine in stock for your child and has obtained insurance approval.
  • Check the bottle for the correct dose and strength each time your child’s medicine is refilled. The amount to take may change if the prescription is filled with a different strength tablet or liquid.
  • Your child needs his blood work checked often, right after the heart transplant and then at least every two months. His medicine may need to be changed based on blood work results. The Children’s Heart Transplant coordinator will contact you to change your child’s dose.
  • A refill from the pharmacy may not be the same as your child’s current dose. If you have questions about the dose of any medicine, call the Children’s Heart Transplant office or have your pharmacist contact the office.
  • Some medicine needs to be approved before it can be refilled. This process may take several days.

Compounded Medications

For infants and small children, most transplant medicines can be compounded into a liquid. This can be done at a special compounding pharmacy. The transplant team can help you locate a compounding pharmacy, if needed for your child.