More and more, children who receive intestine transplants go on to live full, active lives. Growing to adulthood, your child will be able to experience many of the same milestone moments as his or her friends, and to build the life he or she chooses. After your child's intestine transplant, it is important to stay aware of potential risks and make any necessary lifestyle adjustments. These are key parts of recovery and overall success of the transplant. By doing all you can now and educating your child, you can help ensure that your child will continue to make healthy decisions throughout his or her lifetime.
Alcohol and Other Toxins
A transplanted intestine may be more sensitive to damage by chemicals, including alcohol. The transplantation team recommends that recipients avoid overuse of alcoholic beverages after transplantation.
Patients who have used alcohol or abused other chemicals, such as illegal drugs, since their transplant, should contact a coordinator or substance abuse counselor for help. Staff at the Hillman Center for Pediatric Transplantation believe that alcoholism, like many other diseases, is treatable.
Toxic Chemical Exposures
Many commonly used household chemicals – including paint, paint removers, pesticides, gasoline, drain cleaners, and insecticide – can be toxic. This means that even the fumes of these substances can be harmful to an intestine transplant recipient. Intestine transplant recipients should avoid skin contact with or inhalation of any potentially damaging agents by using masks and goggles and ensuring ample ventilation.
Drinking Water
Intestine transplant recipients may drink treated (chlorinated) municipal tap water. If a patient's drinking water comes from a well or questionable source, he or she is advised to boil the water before drinking it: The water should be at a rolling boil for one minute. Questions about water quality can be directed to local water authorities (phone numbers are generally listed on water bills) or the EPA Safe Water Hotline at 800-426-4791.
Medical Alert Identification
In case of emergency, the simple precaution of wearing medical alert identification can be life saving. Intestine transplant patients should keep a list of current medications in their wallets, for easy reference in case of emergency treatment.
The transplant team recommends that intestinal transplant recipients also wear medical alert identification such as a pendant or bracelet, sold under the brand name Medic Alert. Such identification will alert others to a recipient's medical status even if he or she is unable to communicate. A liver and/or intestine transplant recipient's identification should say "Liver [and/or Intestine] Transplant, on Immunosuppressants," and the jewelry should list other important medical diagnoses.
Reducing the Risk of Infection
Immunosuppressant medications, which are necessary to prevent rejection, reduce a person's ability to fight infections. Because immunosuppressed transplant recipients are constantly at risk of infection, lifestyle changes aimed at preventing infection and reducing the risk of infection are critical.
Immunosuppression does not mean that intestine transplant recipients must avoid contact with people. By making some changes in activity and lifestyle, patients can significantly reduce their risks of acquiring infections. Intestine transplant recipients must consider the risks and remember that it is easier to acquire an infection than to fight it off.
If your child is an intestine transplant patient, he or she should take the following actions to decrease the risk of infection:
- Maintain general health through proper nutrition, rest, exercise, and stress reduction.
- Avoid people who have infectious diseases especially people with active viral infections, such as chicken pox, mumps, measles, mononucleosis, tuberculosis, colds, or the flu.
- Take medications to prevent infection, as prescribed.
- Contact transplant coordinators about any sign of infection.
- Take recommended antibiotics before (and sometimes after) dental work or other invasive procedures. Call your transplant coordinator before these procedures are performed.
- Follow recommended food safety guidelines.
- Practice proper hand washing, especially before eating, after touching objects that carry microorganisms (money, doorknobs, and public telephones), and after using the bathroom.
- When in public facilities, turn off the water with a paper towel after drying your hands; use care not to touch the faucet or handles with clean hands. If paper towels are unavailable, use your elbows or the backs of your hands, if possible.
- Scrub hands with soap for at least 10 seconds and take care to rub between your fingers.
- Avoid compost piles; construction sites; damp hay; and decaying plants, fruits, and vegetables.
- Wear gloves during activities such as gardening, which may allow dangerous microorganisms to breach the skin through small cuts in your hands.
- Wear shoes when walking outside, to prevent exposure to soil microorganisms through cuts in your feet.
- Cover your body, including your arms and legs, when hiking.
- Avoid touching your eyes, nose, and mouth when your hands are not clean.
- Do not receive any live vaccinations. For eight weeks after a person has received an oral polio vaccine, avoid him or her. Call your child's coordinator to determine if a vaccine is safe.
- Get tetanus shots as needed (in case of an animal bite or a "dirty cut," for example).
- Get an annual flu shot in the fall. (Flu shots are not live vaccines.)
- Do not share razors, toothbrushes, or eating and drinking utensils.
- Practice safe sex.
- Avoid drinking water that comes from a well. Use bottled water or boil water for 10 minutes if there is a question of contamination.
New risks of infection may present themselves at any time. Call your transplant coordinator for advice when a questionable or unanticipated situation, such as contamination in the local water supply, arises.
Pets
Intestine transplant recipients should not come in contact with animal urine, feces, or vomit (emesis). Bird droppings, especially from pigeons, often carry a fungus that is dangerous to immunosuppressed patients. However, the Hillman Center for Pediatric Transplantation does not ask transplant recipients to give away their house pets. If your child is an intestine transplant recipient, institute staff recommend that he or she:
- Wash hands well after touching pets.
- Have someone else care for sick pets.
- Have someone else clean up after pets, including cleaning the bottom of birdcages or changing cat litter.
- Not allow pets to roam freely outside (Cats in particular may pick up infectious agents while hunting rodents.)
Pregnancy
Hillman Center for Pediatric Transplantation staff do not recommend trying to become pregnant during the first one to two years after intestine transplantation. This is the time when most complications occur and the medication doses are highest.
It is important that female intestine transplant recipients seek prenatal care before becoming pregnant and as soon as they become pregnant.
Numerous female transplant recipients have delivered healthy babies. However, transplant recipients have an increased chance of giving birth prematurely, having low-birth-weight babies, and undergoing cesarean section. The long-term effects of immunosuppression on fetuses are not yet known. Transplant recipient mothers should not breast feed – by not breast feeding, the mother avoids passing medications on to the baby through breast milk.
Intestine transplant recipients who are thinking of becoming pregnant should discuss their intent with their doctor, obstetrician/gynecologist, transplant surgeon, and/or transplant coordinator.
Travel
Far from impossible, traveling after transplant can be a rewarding vacation or adventure. There are extra precautions you will need to take, but by following a few simple travel tips, your trips can be safe as well as fun.
