Waiting for a donor liver can be a challenging time because it's impossible to predict when an organ will become available. You may worry about your child's medical condition and at times may feel helpless, stressed and frustrated. Here are some tips to make the time pass and help ensure your child is as healthy as possible when a donor organ is found:
Talk to your family and friends about your concerns. Ask for help with errands and household chores, if you feel comfortable doing that. The pediatric liver transplant team is also available to answer your questions, talk with you about your worries, and connect you with helpful resources. Don't hesitate to call them.
You can help make sure your child is as healthy as possible when a donor liver becomes available. Take your child to the pediatrician for regular checkups. You'll also need to bring your child to the transplant clinic for ongoing evaluations. Stay in touch with the liver transplant coordinator and let him know about any changes in your child's health. Contact the liver transplant coordinator if your child is hospitalized.
Once your child has been listed for a liver transplant, it's important that your child continue to receive immunizations against childhood illnesses such as chickenpox, measles and more. In preparation for transplant, she may need vaccinations ahead of the regularly recommended schedule.
The pediatric liver transplant team will be happy to work with your primary care pediatrician to make sure your child gets the shots she needs to stay healthy before, during and after transplant. Should your child be exposed to any of the childhood diseases for which she hasn't been vaccinated, please contact the liver transplant coordinator.
Regularly scheduled immunizations should also continue after your child's transplant.
For more information about vaccines, please visit CHOP's Vaccine Education Center.
Because no one knows for sure when a liver will become available, it's very important that your family be prepared to travel to the hospital at a moment's notice. Whether you are traveling by car, plane or train, you should make your travel arrangements now. Be sure to talk to the liver transplant coordinator if you have questions about directions or transportation. Pack a bag for yourself and your child. Make a list of things you want to bring with you. If you have other children at home, be sure to make any necessary arrangements for them ahead of time, too.
It's vital that the transplant center be able to reach you if a suitable liver becomes available. Be sure to give the liver transplant coordinator the phone numbers of people who can easily locate and contact you. If you travel, you should contact the liver transplant coordinator with your itinerary, destination and phone numbers before you leave. If the coordinator can't reach you, the liver may have to go to the next potential recipient.
Reviewed by: Elizabeth B. Rand, MD
Date: November 2012