Tips to Keeping Your Child’s Intestinal Transplant Healthy as Long As Possible:

Keeping an intestinal transplant healthy means a change in lifestyle. It will take some discipline. Keeping an intestine healthy can sometimes be very stressful. Please talk to your transplant team about your concerns. Here are some tips to help keep your child and their transplant healthy. 

• If you have a crisis in your life, please contact your transplant team at once for help. They are there to help and support you.

• Helping your child take his or her medications regularly every day and on time is very important. It is the only way to keep your child’s body from rejecting the intestine and other organs. This can happen even after many years of having a stable transplant if your child stops taking their transplant drugs suddenly or if your child does not take them as instructed.

• If the medications get in the way of your child’s daily activity, or your child is having bad side effects, please talk to the transplant team. There may be changes in your child’s medications that can be made to help them. Do not stop or change medication on your own.

• If your insurance coverage is running out, please talk to your transplant team. They will help you find a way to get the medications you need without a break in your treatment. Many children can stay on their parent’s insurance until they are 26 years of age.

• Some employers will even grant special coverage past 26 years of age to allow children with chronic illness or extenuating circumstances to remain on parent’s insurance; check with your employer for specific programs and policies.

• Keep your regular doctor appointments.

• If your child is close to 18 years of age and worrying about being switched to adult care, discuss your concerns with your regular transplant doctor. Sometimes this transfer can be delayed or done slowly until you get to know your new adult transplant team (or this team at the center may be the same- it depends which transplant center you are at).