Living with a transplant is a lifelong process. Your child will be taking immunosuppressants and other medications for the rest of her life. Regular follow-up visits and checkups to ensure her new liver is functioning properly are essential. And when your child becomes old enough, she'll need to learn about antirejection medications and what they do, the signs of rejection, and everything else her parents have learned, all so she can eventually care for herself independently.
Despite these issues, most children who receive a pediatric liver transplant are able to live a normal life with few restrictions. They attend school, participate in sports and other age-appropriate activities, and can eventually have children if they wish. If you have questions about what your child's life will be like after transplant both now and when she becomes an adult, don't hesitate to ask.
After your child goes home from the hospital, he will need frequent visits to the Pediatric Liver Transplant Program. At the Hospital, he will be examined and undergo regular blood tests. Because the first year after pediatric liver transplant is the time in which rejection and other problems are most likely to occur, it's very important that the pediatric liver transplant team nurses and physicians closely monitor your child, especially since rejection episodes are often detected first with blood tests.
A typical schedule of post-transplant clinic visits might be:
- Once a week for the first month after transplant
- Every two weeks for one more month
- Once monthly for the following two months
- Every two months (twice)
- Every three months (twice)
- Every six months (twice)
- Once a year, for life
Your child will also need to get laboratory tests done at least every three months for the rest of his life.
Rejection after pediatric liver transplant
Rejection is the body's normal reaction to something foreign. When a new liver is placed in a person's body, the body sees the transplanted organ as a threat and tries to attack it. To allow the transplanted liver to successfully live in the body, your child must take antirejection medications. These medications trick the immune system into ignoring the transplanted organ. Your child will need to take these medications for the rest of her life.
You should also know that rejection is fairly common, with approximately 40 percent of children experiencing some signs within the first two weeks of surgery. Rejection can occur anytime — days, months or even years — after transplant. And while the word "rejection" sounds alarming, a rejection episode doesn't mean your child will need another transplant. Rejection is treatable, usually by adjusting medication doses, and doesn't generally seriously injure the liver.
Always be on the look out for the following symptoms of rejection:
- Jaundice (yellow skin and eyes)
- Changes in stool or urine color
- Changes in bloodwork results
If your child experiences any of these symptoms, you should call her liver transplant coordinator or the transplant office immediately. If your child's doctor suspects your child is experiencing rejection, he may order a liver biopsy. The biopsy confirms rejection and allows the physicians to see how much your child's liver has been affected.
To prevent his body from rejecting the new liver, your child must take antirejection medications starting immediately after liver transplant and continuing for the rest of his life. In the first year, your child will take higher doses of these drugs, as well as a variety of other medications, such as antibiotics and antifungals. As time progresses, the dosages and number of medications will decrease.
Your child may be taking one or more of the following antirejection medications (also called immunosuppressants):
- Tacrolimus (brand name: PROGRAF) is taken in the morning and at night, with 12 hours between each dose, at the same times every day. The doctor determines the tacrolimus dosage based on liver enzymes and blood levels.
- Cyclosporine (brand names: NEORAL, GENGRAF) is taken in the morning and at night, with 12 hours between each dose. Dosage is individually regulated based on the amount of cyclosporine in your child's bloodstream.
- Prednisone/prednisolone (brand names: SOLU-MEDROL, PEDIAPRED, PRELONE), steroids are given once a day in the morning. Your child's dosage will be decreased over a period of three to six months and eventually discontinued.
- Mycophenolate mofetil (brand name: CELLCEPT), used in combination with Prograf and prednisone, is taken morning and night, with 12 hours between each dose, at the same times every day.
- Sirolimus (brand name: RAPAMUNE), is taken once a day. The doctor determines the Sirolimus dosage based on the amount in your child's bloodstream.
Your child's healthcare team will periodically check your child to determine the level of medication in his bloodstream. Blood samples should be collected in the morning before the AM dose.
When giving your child immunosuppressants, you must give them exactly as directed by the doctor. If you have any questions, be sure to talk to your child's healthcare team.
Your child's doctor will probably prescribe other medications in addition to the antirejection medications your child is taking. Because antirejection medications affect the immune system, children who receive a liver transplant will be at higher risk for infections. Your child will need to take drugs designed to prevent these infections, such as:
- Cotrimoxazole (brand names: BACTRIM, SEPTRA): antibiotic designed to prevent pneumocystic pneumonia — it is taken once or twice a day on Mondays, Wednesdays and Fridays generally for one year after transplant.
- Nystatin (brand name: MYCOSTATIN): an antifungal medication used to prevent thrush (a fungal infection that causes white patches in the mouth), which is taken four times a day. Your child should swish the liquid in her mouth, then swallow it. Nystatin is stopped around the same time as prednisone.
- Ganciclovir (brand name: CYTOVENE): an antiviral medication that is given intravenously to prevent and treat cytomegalovirus (CMV), will be given to your child once a day while she is in the hospital; she may continue to take it after discharge.
- Acyclovir (brand name: ZOVIRAX): the oral version of ganciclovir, is taken three times a day for 100 days after the transplant.
In addition to infection-fighting drugs, your child may also need to take other medicines and supplements, including:
- Aspirin: taken once a day in the morning to prevent blood clots from forming in the liver's blood vessels. Your child will be on aspirin until the one-year anniversary of her transplant.
- Ranitidine (brand name: ZANTAC): taken in conjunction with steroids, to help prevent stomach irritation.
- Magnesium supplements: usually taken two to four times a day, these supplements may occasionally be prescribed because antirejection medications can cause the body to "waste" magnesium, lowering your child's magnesium levels.
- Calcium supplements: may be prescribed if your child has low bone density because of her liver disease or medications.
- Ursodiol (brand name: ACTIGALL): usually taken two times a day to help increase bile flow.