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The process of recovering from a liver transplant is different for each child; your family's need for advice and support from your transplant team will vary in the months and years ahead. We hope that the following information will help you gain the confidence and knowledge you need to help your child return safely to everyday life.
Preparation for going home begins from the time your child is admitted for his or her liver transplant. The goal of the transplant team is to give you every opportunity possible to allow you to care for your child after transplant.
Many hours will be spent in providing you with information that will be important for you to know once your child is discharged from the hospital, such as medication administration signs of infection and rejection. The clinical nurse specialist and nursing staff will help you plan a schedule specialized to meet your child's needs.
While in the hospital, you will get to know your child's transplant coordinator. Think of the coordinator as a source of information and support for your family throughout the transplantation process.
Before going home, you will learn about the medicines your child must take each day to prevent rejection of his or her new organ. Hospital staff will also show you how to use any equipment you'll need at home. When your child is discharged from the hospital, you will be given arrangements for a supply of medication, instructions, and phone numbers to call with questions or emergencies.
Keep in touch with your coordinator. He or she can help you with home care issues, medication questions and refills, as well as address any general questions or concerns you may run into. The transplant coordinator will provide you with a follow-up routine and continue to be your link with the transplant team. He or she will also communicate with your local physician. Don't feel hesitant to call any time, for any reason. A transplant coordinator is available 24 hours a day for emergencies.
For the first month or so after discharge from the hospital, depending on your child's health, you will stay in the Pittsburgh area so your child can bee seen regularly as an outpatient at the transplant clinic.
Clinic visits allow doctors to monitor the function of your child's new organ, so they can detect any problems as soon as possible. Clinic is also an opportunity for you to ask any questions you or your family may have.
The doctor and the nurse will discuss your child's current health, check your child's weight and blood pressure, and perform a physical examination. They will check for any signs of rejection or infection as well as side effects from medication, and look at your child's incisions to see if they are healing properly. Blood tests will be taken to observe your child's liver function, kidney function, and blood count. Other tests measure the level of tacrolimus or cyclosporine in your child's bloodstream.
Sometimes, the doctor may perform additional tests. These include colonoscopy, ultrasound, and/or a biopsy.
Your child's medication is reviewed at each clinic visit. Although your child will likely take immunosuppressants for the rest of his or her life, the doctor may change the doses. Talk to your doctor about any problems or side effects your child is having; most of these can be treated by adjusting current medications or starting new ones.
If your child's blood results are abnormal, the hospital may phone you to alter the does of your medications or arrange for your child to be readmitted to the unit for further investigation or treatment.
While your child will need to attend follow-up clinics for the rest of his or her life, visits will become fewer and further apart as he or she gets better. The following timetable can serve as a general guide; your child's follow-up visits will depend on his or her rate of recovery as well as the distance you have to travel to get to the hospital.
Once you return home, your child will go back to seeing his or her personal physician for routine medical care.
Because some medications may interfere with the immunosuppressant your child is taking, make sure that any doctor prescribing your child new medicines is aware of your child's current medications. If you are buying any medicines over the counter, check with the pharmacist to make sure they are safe for your child to take. This also includes alternative medicines. Some herbal and homeopathic remedies have ingredients that can interact with your child's medication.
If in doubt, contact a member of your transplant team for advice.
Your child's spirits are likely to soar once at home, and he or she may be anxious to get back to normal activities. One great way for your child to gain confidence and develop new friendships is to attend Camp Chihopi, which is sponsored by Starzl Transplant Institute. Camp Chihopi is a great opportunity for your child to ease into childhood activities ranging from arts and crafts to horseback riding and volleyball in a comfortable and welcoming environment.
After a successful liver transplant, your child's appetite and dietary requirements should gradually return to normal. Your child will probably not need a special diet at home. Still, now is a good time to think about establishing healthy eating habits. Eating a balanced diet is a good way for your child to take care of his or her new liver, and it's something your whole family can do together.
Before your child's discharge from the hospital, a dietician will assess your child's food intake and weight. The dietician will discuss with you any specific dietary requirements your child may have.
If your child's appetite is poor and he or she is not managing to eat well after the transplant, you may be advised to continue with supplement drinks. Your child's dietician can arrange for these to be prescribed at home until your child's appetite and food intake have improved.
It is advisable to continue on a no-added-salt diet for the first three months post-transplant. During this time, your child may be on steroids (such as prednisone), which encourage fluid retention. Too much salt may further increase this, and it is also linked with high blood pressure. Salt substitutes are not recommended, as they contain high levels of potassium.
Other restrictions, such as protein and fluid restrictions, are usually temporary. It is unlikely your child will need to continue on them after discharge; the dietician will keep you advised. If in doubt, please ask.
Once your child is feeling better and not on any dietary restrictions, he or she is likely to eat more than before the transplant. Steroids and other immunosuppressant drugs can cause and increase in fluid retention and an increased appetite. As a result, your child will gain weight, but this should not be excessive.
Before the liver transplant, your child may have felt too tired or unwell to exercise regularly. Now that your child has a healthy organ, he or she should start to feel better, and eventually be able to return to most sports. Some sports, such as football or wrestling, involve direct contact that could cause injury or internal damage; therefore they are not recommended. Your child may want to start with gentler exercises, like swimming. From an infection point of view, it is safe to go swimming about three months after the transplant.
In the hospital, your child will be given an appropriate exercise program by a physical therapist (PT). Your child's PT will help your child do different types of exercises:
Continue the program at home, beginning at an easy level and progressing. If your child experiences sudden pain or shortness of breath during an activity, he or she should stop right away. Contact your doctor if pain persists. It is also best not to exercise directly after a meal. If your child has a temperature, is fighting a cold or the flu, or feels tired or generally under the weather, it is better to skip exercise that day and get some rest.
If your child is a natural athlete or even wants to try a new sport with his or her newfound strength, maybe someday he or she can support your local Transplant Team at the Transplant Games.
Another great way for your child to gain confidence and develop new friendships is to attend Camp Chihopi, sponsored by Starzl Transplant Institute. Camp Chihopi is a great opportunity for your child to ease into childhood activities ranging from arts and crafts to horseback riding and volleyball in a comfortable and welcoming environment.
Children's Hospital of Pittsburgh of UPMC understands that successful recovery and care for post-liver transplant surgery extends well beyond the hospital stay. Below we've compiled information to help parents and caregivers understand the medical and emotional needs of your child or teen once they leave the hospital.
Children's Hospital's main campus is located in the Lawrenceville neighborhood. Our main hospital address is:
Children’s Hospital of Pittsburgh of UPMC
One Children’s Hospital Way
4401 Penn Ave.
Pittsburgh, PA 15224
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