Life After Heart Transplant: Interactive Guide
After your child undergoes a heart transplant, your family might have questions about whether certain activities are appropriate and recommended. This interactive, educational guide has answers about sports, diet, returning to school and more. Start the module below.
Transcript from the guide
It is our hope that after your child receives a heart transplant, they will go on to have an excellent quality of life, doing most of the things that any other child their age can do. There will be more visits to doctors and hospitals than most other children experience, and your child will need to take medication for the rest of their life. But usually children who receive heart transplants can do just about any activity they want to do. Many of our heart transplant patients are runners, swimmers, dancers, soccer players, baseball players, artists and musicians! They attend school regularly and achieve life and career goals.
Should my child wear a medic alert bracelet?
Every child who has received a heart transplant should wear a medic alert bracelet, necklace or anklet to make medical personnel aware of the history of heart transplant. These bracelets can be purchased either online or by mail. There is an option to keep all of your child’s medical information (including current medications) on the bracelet company’s online database, so that in an emergency, all important information is easily obtained. You may also choose to just indicate “heart transplant” and include CHOP’s main phone number and instructions: call 215-590-1000 and ask for the cardiology fellow on call.
Please talk to your transplant nurse practitioners or transplant coordinator to find out if there is any other important information they suggest you include on your child’s bracelet. In the meantime, be sure to include the following:
- Heart Trx Recipient
- Ask for the Cardiology MD On Call
- Allergies (if applicable)
When can my child return to school?
Because your child’s immune system is very weak right after transplant, we require that your child stay out of school for the first three months after transplant. During this time, we will help you to set up homebound education for your child. A teacher will usually come to your home daily for one or two hours of instruction. Once back at school, your child will no longer need to wear a mask (the three-month period will be up) and will be able to participate in all activities, including physical education (gym).
What CHOP will communicate to your child’s school:
- We will communicate with your child's school before they return.
- We will provide your child's school with the transplant information they need for your child to safely return to school.
Are pets OK?
After transplant, your child is more prone to infection than before. Nonetheless, most family pets are perfectly safe to have in the house and for your child to be around. Cats and dogs should be kept up to date on their vaccines.
Specific instructions regarding:
After transplant, your child should not clean or handle the litter box of the family cat, as there is a risk of getting a certain bacteria (toxoplasmosis) that is sometimes found in the stool of cats.
We recommend that you do not have any reptiles as pets, as they may carry bacteria called salmonella, which could cause your child to get sick. If your family does have a reptile as a pet, your child should thoroughly wash their hands after handling it.
3. Zoo animals
Your child may handle reptiles or other animals at a zoo or museum but must clean their hands with hand sanitizing gel or soap and water afterwards.
Can my child get piercings and tattoos?
We recommend that your child doesn’t get any ear or body piercings or tattoos until you speak with one of your transplant doctors or transplant nurse practitioners. These are not necessary medical treatments, and they could put your child at risk for infection.
Can my child be physically active?
After surgery, exercise will be an important part of recovery. A physical therapist will work with your child while they are in the hospital and may continue to do so on clinic days for the first month after discharge. Once the breast bone is healed after approximately six to eight weeks, there are very few restrictions on physical activity and your child can participate in usual activities.
Regular exercise is very important for all children who have had heart transplants. It is important in order to maintain a healthy weight, to help lower blood pressure, and for overall well-being. The only exercise that is not recommended for someone after heart transplant is heavy weightlifting, as this may put extra stress on the heart.
When your child returns to school, they can and should participate in gym class.
Your child may swim in the ocean or chlorinated pools after transplant. Because your child’s immunes system will forever be weakened after transplant, we recommend that they do not swim in lakes or ponds as they are more likely to have bacteria or other organisms which could cause your child to become sick.
What about my child’s diet and water intake?
Your child’s diet will have some limits but generally can be normal. Maintaining a healthy weight after transplant is important as obesity increases the risk of obesity and other complications. Overall, your child should avoid food high in cholesterol and saturated fat, and you should not add extra salt to food.
Your nutritionist will provide you with more detail prior to discharge.
Fast food is OK occasionally but should be limited.
Your child should avoid eating raw meats or fish (for example, sushi) as those foods can carry bacteria and viruses.
You should avoid buffet-style restaurants to avoid the risk of bacteria from food that is sitting out.
Fruits and veggies
Fruits and vegetables should be washed thoroughly.
Lunch meat is safe to eat if it is fresh and used by the due date.
Water is VERY important after transplant. The medications that are needed to suppress the immune system can be harmful to the kidneys. Drinking enough water and staying hydrated is important. Your child should carry a water bottle to school and drink throughout the day.
- If you have well water, you must use a special filter system or use bottled water due to the risk of bacteria in the well water.
- If you have city water, it is already filtered and it is safe to drink.
If you are unsure of your water source, you can reach out to your local water department.
Does my child still need regular pediatric care?
After transplant, your child will continue to be seen by their pediatrician for “well child” checkups and for routine illnesses. We will provide your pediatrician with a summary of your child’s hospital course as well as some important information for them regarding post-transplant care.
Your child should not receive any vaccines for the first 6 months after transplant.
After transplant, your child can NOT receive ANY LIVE VACCINES. Examples include measles/mumps/rubella (MMR) and chicken pox/varicella.
After 6 months post-transplant your child should continue to get regularly scheduled NON-LIVE vaccines, including the flu shot. Your pediatrician and the transplant team will help you to know which vaccines are live and which are non-live.
Regular dental visits are a very important part of your child’s post-transplant care. Once your child is 6 months post-transplant, they can resume normally scheduled dental visits for cleanings and checkups. Please talk with the transplant team prior to any dental visits.
- Your child may require an antibiotic prior to dental work.
- Your child should not get any sedation or anesthesia for dental procedures without talking to the transplant team first.
What does the transition to adult care involve?
As your child gets older, we want to help prepare them for eventual transition to adult care by teaching them about:
- their medical condition
- their medications
- what they will need to know to manage their own health in the future
This teaching will continue until your child reaches the age of 18 or 19, when care will be transferred to an adult heart transplant team of your choice. There are many adult heart transplant programs in the country, and your CHOP transplant team can assist you in finding one for your child when the time comes.
Questions? Concerns? Who do I call?
Important CHOP phone numbers
Main number; ask for the cardiology fellow on call
Scheduling center (for clinic visits, and procedures)
The Connelly Resource Center for Families
Please call the transplant office or the on-call transplant nurse practitioner any time you have questions or concerns about your child’s health.
Call immediately if your child has:
- sudden weight gain, swelling of the hands, feet or face
- irregular heartbeats or palpitations
- cough, trouble breathing, or breathing that is faster than usual with signs that they are struggling (flaring of the nostrils, grunting)
- nausea, stomach pain or a decrease in appetite that lasts longer than 24 hours
- diarrhea or vomiting
- blood in the urine or the bowel movements
- painful urination
- decrease in urine output, or less frequent wet diapers
- tiredness or an increase in naps
- constant headaches or flu-like symptoms
- fever greater than 100.4 degrees
- any unexplained rash
- dizziness or fainting
In case of an urgent concern or emergency, call 911 or take your child to the nearest emergency department immediately. Please notify the transplant team as soon as possible if your child requires an emergency room visit.
United Network for Organ Sharing (UNOS)
P.O. Box 2484, Richmond, VA 23218
Gift of Life Donor Program
401 N. Third St., Philadelphia, PA 19123