Life After Transplant

After your child is discharged, he/she will need to have frequent follow-ups at the heart transplant clinic. After several months and then a year, the follow up appointments become less frequent. Follow up appointments often involve blood and urine tests as well as heart tests such as an echocardiogram, heart catherization or electrocardiogram. 

Medication

Following instructions for the recommended medications is vital for a successful heart transplant. Medications help to prevent organ rejection. Most transplant recipients take three types of medications: 1) immunosuppressants, 2) anti-infection medications and 3) other medications.

Immunosuppressants help the body from attacking the new heart by weakening the immune system. Immunosuppressants will need to be taken for the rest of the child’s life, but over time, the dose may be decreased.

Children who have received heart transplants have a greater risk of developing certain infections because they are taking immunosuppressants. Anti-infection medications help to prevent or fight infections and are typically taken during the first year after transplant and after being treated for rejection.

Other medications are given to control the side effects from surgery or from other medications. This may include high blood pressure, stomach pains or blood clots.

It is vital for parents to understand their child’s medications and guidelines for taking them. 

Rejection

Your child’s body will naturally try to reject the new heart because it recognizes it as different from the rest of the body. Medication can help to control rejection. Organ rejection can occur at any time, but is most common the first year after transplant. Different factors can impact a child’s risk for rejection, which your transplant team will discuss with you.

Signs of rejection include fever, fatigue, shortness of breath, stomach upset, irritability, palpitations, dizziness, swelling, significant weight gain, and changes in usual heart rate or blood pressure. Contact your child’s medical team if you notice any of these symptoms. Tests and procedures such as a heart biopsy, and other more non-invasive tests such as echocardiogram, electrocardiogram, holter monitor and BNP blood test are used to monitor and diagnose rejection.  

Infections & Diseases

Some infections are more serious in a child who is immunosuppressed. To help your child avoid infections, be sure to practice good hand washing, ask sick friends and relatives to avoid visiting until they are healthy, maintain general wellbeing, and inform the transplant team if your child has been in contact with someone with the chickenpox. Contact your pediatrician if your child shows any signs of fever, runny nose and cough, sore throat or ears, stomach pain, vomiting, diarrhea, pain when urinating, sores on lips or mouth, or rashes.

Following a Healthy Lifestyle

Transplantation can provide a better quality of life and greatly improve survival for children with end-stage heart failure. However, it is important to remember that a heart transplant is not a complete cure. A child will need to take daily medications and deal with certain health precautions. It is extremely important to follow the directives of your child’s medical team to ensure the best possible outcome after transplant. There also may be changes in the area of exercise, diet and behavior.

  • Exercise and physical activity is encouraged in transplant patients. Strenuous activities should be avoided for the first eight weeks after transplant. 
  • Your child’s appetite after transplant will be different than before. Your child’s dietician will help you to develop a nutritional plan. 
  • It may be helpful for a child to see a counselor or therapist for a few sessions for help with any emotional difficulties, such as anxiety or depression, as well as any other behavioral concerns.

CCF’s network of affected individuals and families include many families who have experience with the heart transplant process. If you would like to be matched with another heart transplant family, please contact CCF’s Patient Outreach & Support Manager to be connected.

To learn more about life after heart transplant, click here

Glossary 

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