Your child will return to their previous activity level almost immediately.
While we encourage everyday play activity (riding a bike, going on walks), your child should not participate in competitive sports, vigorous exercise, or physical education until cleared by the transplant team (usually three months after surgery).
It is not unusual for children to have weak muscles prior to transplant due to their liver disease; however, after transplant you will likely notice gradual improvements.
Steroids post-transplant surgery can also cause muscle weakness. Physical therapy may be started while your child is in the hospital and may be continued after discharge.
Adjusting to life after transplant
Readjusting to life after a liver transplant takes time.
Feeling worried or unprepared to cope without the support of medical staff is common and usually gets better with time, support and resources provided by the medical team to make the transition to home easier.
Common temporary reactions after leaving the hospital
Clinging to parents or siblings
Bed wetting or thumb sucking
Difficulty sleeping alone or nightmares.
Older children and teens:
Complaining of headaches or stomachaches
Changes in sleeping and eating patterns
Being easily startled or overly concerned about things.
- Being over-protective, even when things are going well
- Worrying about being able to care for their child’s medical needs on their own.
If things don’t improve within a few weeks, get worse, or begin to interfere with daily activities, talk with the transplant team about getting some extra help.
Helping your child cope after transplant
Allow everyone some time to adjust. The road to transplant can be a long one in which new patterns of behavior may have developed. Be patient and reassure family members, including siblings, that things are returning to normal.
Gradually get back to daily routines. Children feel safe when things are predictable. As your child recovers from transplant, encourage participation in previously enjoyable activities (with your doctor’s approval). This also includes gradually giving your child more responsibility in things, such as chores.
Set normal limits. Your child has been through a lot and it is easy to be lax on the rules or expectations. However, maintaining normal expectations and being consistent with rewards and discipline promotes better adjustment over time.
Encourage time with friends. When children are away from school or their friends for an extended period of time, they may feel “different” or worry about what their friends will say. Remind your child that friends ask questions because they care. Work with your child on having answers to questions that friends may ask to avoid feeling caught off guard.
Give yourself time to heal. Helping your child manage the post-transplant treatment regimen and providing emotional support will be challenging if you are feeling overwhelmed, worried or angry. Talk with others about your feelings. Don’t be afraid to ask for help, and make time again for things you enjoy.
Your child should visit a dentist a minimum of every six months, for several reasons:
Some transplant medications can cause gum overgrowth that is aggravated by plaque. Routine dental hygiene is effective in decreasing the severity.
Medications that lower your child’s immune system can potentially cause complications from a cavity, such as a tooth abscess.
Remember, when your child gets their check-ups or treatments they may need antibiotic prophylaxis according to the guidelines established by the American Heart Association. Your local dentist or PCP will be familiar with the guidelines. However, if you have any questions, you can always call the transplant team.
Your child should have routine eye exams every year and as your PCP recommends.
To prevent infection after transplant, it is very important that your child get their immunizations (vaccines).
In general, your child CANNOT receive any live virus vaccinations:
MMR (mumps, measles, or rubella)
OPV (oral polio vaccine)
Varicella (chicken pox vaccine)
Inhaled influenza (FluMist)
In general, your child can receive the following vaccinations:
DTap/Tdap (tetanus, diphtheria, pertussis)
Hepatitis B series
IPV (injectable polio vaccine)
Hepatitis A series
HIB (H. influenza vaccine)
Pneumococcal 13 and 23 vaccines
Influenza (flu) shot
It is okay for other family members to receive the Varicella and MMR, but not the inhaled influenza (FluMist) or the OPV. If a sibling receives one of these vaccines, we recommend good handwashing, no sharing of cups/utensils, and no sleeping together for one week following vaccination.
Some schools or activity programs may need a letter explaining why your child has not had live virus vaccines. The transplant team can provide this letter to you.
It is recommended for transplant patients and their families to receive the influenza vaccine every year. Household members should get the injectable (needle) flu vaccine only.
If your family is planning international travel, you may need additional immunizations. Please contact the transplant team for more information.
Medical alert bracelet or necklace
It is very important that your child wear a medical alert bracelet or necklace at all times. An order form is included at the end of the handbook.
Nutrition after liver transplant
- It is important for your child to eat a well-balanced diet.
- While on steroids your child needs to be on a no-added salt diet (the same diet they were on in the hospital).
- Include high protein foods (meat, poultry, milk, cheese) in your child’s diet.
- Protein is necessary to build muscle.
- Steroids can slow production of new muscle.
- Steroids can increase your child’s appetite and cause weight gain.
- Be mindful of overeating as your child will feel hungry and eating will not necessarily satisfy this hunger.
- Establish good eating habits. Limit junk food and high fat foods.
- A dietitian will meet with you frequently to discuss recommendations and address any questions or concerns.
No special skin care is necessary. Notify your child’s PCP of any new raised areas or sores that won’t heal, or any warts or moles that have changed.
Acne is often a side effect of steroids. Encourage your child to wash their face regularly with an over-the-counter acne wash. If acne becomes a problem, your child may need to see a dermatologist. Contact the transplant team before beginning any dermatologic treatments or prescription medications.
Warts are viral infections of the skin. In a child that is immunosuppressed, warts can spread easily, so it is important to seek treatment from your PCP or a dermatologist as soon as a wart is noticed. This helps prevent spreading of the infection.
Because of your child’s medications, their skin is more sensitive to the sun and they are at greater risk of developing skin cancer.
Limit sun exposure between 10 a.m. and 2 p.m.
Always use sunscreen with a minimum SPF of 30 and broad-spectrum coverage.
Apply sunscreen frequently throughout the day. Water and perspiration can decrease effectiveness.
Encourage your child to wear light, protective clothing, as well as a hat.