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Pediatric Post-Transplant

Life and Responsibilities

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Section 1: Post-Transplant Responsibilities

Follow-Up Appointments


It is critical to keep all follow up appointments as scheduled with the transplant team. These appointments are vital in keeping your child’s new intestine functioning properly and allow you to ask questions regarding your child’s recovery process. At first, your child will likely be seen twice weekly for follow up appointments and the frequency will decrease as your child become more stable (this will vary by transplant program, and by patient depending upon how well your child is doing). At the appointment, symptoms will be reviewed, input and output records will be reviewed, and nutritional and hydration status will be monitored. Your child may have appointments with other departments, such as infectious disease, to monitor their health status. These are just as important to keep as the appointments with the transplant team.




Lab Work


Lab work will be done twice weekly immediately after discharge, and then frequency will decrease as your child becomes more stable (once again this will be on a patient-by-patient basis, but this is the general rule). Do not take anti-rejection medications the morning of bloodwork until after the blood has been drawn, this allows for the trough (bottom) level of the medication to be monitored. If your child’s bloodwork is abnormal, you may be called to either adjust the medication dose or to come in to have your child admitted.




Ileoscopy


Once discharged, your child will have an ileoscopy (biopsy/ or scope) of the new intestine every 7-10 days until your child is more stable and are not showing signs of rejection (may vary per transplant center and child). Please note: Not every transplant center will create a stoma after transplant. Also, some transplant centers do not conduct surveillance biopsies. Please consult with your child's transplant team to determine their protocols.




How long do we need to stay in my child's transplant center area after his or her transplant?


You will need to stay in the area of your transplant center for the first 3-6 months following your transplant (exact time will vary based on the individual needs of your child and the individual center requirements). After that time your individual transplant center will determine how often you will need to come back for visits; a general rule is for the first year once every 3 months for the first 6 months; then every year after that, one visit per year.




Post-Transplant Demands


  • Follow-up care is a demanding responsibility for the first six months after transplant (and even the time thereafter).
  • It is normal to feel frustrated and overwhelmed, but your transplant team is there to help you and there are many support systems in place to get you through the difficult time.
  • These demands will also decrease as time goes on and your child’s new organ stabilizes, appliances are removed, follow-up visits decrease, oral intake increases, and your child’s quality of life improves.
  • Do not ever hesitate to ask questions, reach out to your transplant team, or reach out to any of the members of Transplant Unwrapped to help get you through this journey. We have many support programs available to help support you and your family.




When should I call my child's transplant team?


Call your transplant team based off the instructions provided to you by your individual transplant center. These are just general guidelines. If you or your child is experiencing a life-threatening emergency, dial 911, or proceed to the nearest emergency room. Please call the transplant office or the on-call transplant coordinator any time you have questions or concerns about your child’s health. Call the transplant coordinator right away if your child has (or whatever the reccomendations of your respective transplant center):

  • Redness, swelling, drainage or pain at the incision site or other sites.
  • Any redness, drainage, swelling or damage to the drain, if your child has one.
  • Any fever over 101.0° or a fever of 100.0-101.0 for over 24 hours.
  • Diarrhea or vomiting that lasts more than two to three hours.
  • Weight gain or swelling.
  • Headaches or dizziness.
  • Exposure to chicken pox or shingles.
  • Any rashes.
  • Stomach pain.
  • Any decrease or darkening of urine.
  • Poor appetite or fluid intake.
  • Cold hands, fingers or toes.
  • Also call if your child:
  • Is not able to take his medicine.
  • Is sleepy and doesn’t want to wake up (lethargy).
Possible responses from your child's team you may expect with a fever: You may be asked to take your child to the nearest emergency room. For a fever, your child may be evaluated with a culture of the blood, throat tissue, or urine; a chest x-ray, tests of liver enzymes, digestive enzymes, blood glucose, and other factors in the blood. Your child’s symptoms and physical condition will also be assessed, and other tests will be determined, if necessary.




Vital Signs


Vital signs include the measures of body temperature, blood pressure, heart rate (pulse), and weight. Many children have high blood pressure after their transplant. Anti-rejection medicine may increase blood pressure It is vital to take blood pressure medicines as ordered by the transplant doctor. When you get home, you may be asked to keep a daily record of your child’s blood pressure, weight, and temperature. Call the coordinator if the reading is not normal for your child. If there is a problem, the coordinator may ask you for your child’s recent vital blood pressure or temperature. Bring the blood pressure record with you when you visit the transplant clinic.





Section 2: Adjusting to Post-Transplant Life

Car Seats


All states have laws that require babies and toddlers to be properly restrained in a car safety seat that is correct for their age and weight. Have all children age 13 or younger ride in the backseat. Always wear a seatbelt, it’s the law.




Post-Transplant Feeding and Nutrition


Enteral feeding (feeding to the intestine either by mouth or by tube feeds) is tried with the appearance of gas and effluent (liquid, stool) from your child’s stoma. If tube feeding is initiated, the rate is usually started slowly and then increased as tolerated by your child. Oral intake may be introduced as the tube feeds are being advanced. It is common for children to have oral aversions to feeding as they often have not learned to eat or when they did eat in the past, it was associated with abdominal pain, nausea and vomiting. If your child is struggling with the introduction to oral feeding, trained occupational therapists or speech therapists will be consulted to help your child learn the skills to eat. If you would like more information about feeding therapies and learning to eat, please visit the Feeding Tube Awareness Foundation website. To read more about the definition of feeding disorder you can visit this page from the Kennedy Krieger Institute. After transplant, patients are generally able to achieve linear growth, maintain adequate muscle and fat stores, and transition to an oral diet. Your child will be continuously monitored by the transplant team’s dieticians for growth and the ability to maintain body weight throughout the post-transplant period as well as periodic bloodwork measurement of serum trace elements and vitamins to ensure your child is maintaining sound nutritional status.




Food Safety


It is important to closely monitor what your child consumes since their immune system is now compromised. Children with weakened immune systems are at increased risk for infections. The risks can be controlled by making sure your child follows simple food safety procedures. First and foremost, make sure your child sanitizes his or her hands before eating any type of food. Ideally, this would be washing hands with soap and water, but in the absence, the use of a hand sanitizer will suffice. In the event that you are eating outside of the home, make sure you always carry sanitizing wipes with you so that you can wipe down tables and chairs even though the restaurant or location you are eating at may wipe down the tables themselves. It is always better to cleanse the table and chairs that you and your child will be using to ensure it is properly sanitized. One of the most important causes for food borne illnesses in the home is cross-contamination. Cross-contamination occurs when juices or blood from uncooked meat, poultry, or fish comes into contact with other foods by means of cutting boards, utensils, plates, countertops, or hands. You can avoid cross contamination by making sure you use separate cutting boards, knives, and gloves when you handle meat versus produce. In terms of actual food, the single most important thing to remember when you eat out is never to eat raw foods of animal origin, such as fish, beef (steak tartar), or seafood. Eating raw oysters, for example, can cause serious problems. Raw oysters can harbor a number of harmful organisms, including a particularly deadly bacterium called Vibrio vulnificus. You also should not eat undercooked foods of animal origin. This means no rare roast beef or undercooked hamburger. Avoid foods that include raw or undercooked eggs, such as Caesar salad, Hollandaise sauce, some custards, and chocolate mousse. Do not eat soft cheeses and discard moldy foods. It is best to avoid buffets, delis, and restaurants that leave food sitting out for long periods of time. If food has been sitting out longer than two hours then your child should not consume it as it can start harboring potentially harmful organisms and is no longer safe to consume. When purchasing food, do not buy foods in damaged containers such as containers with cracks, dents, or bulging lids. It is also recommended to avoid roadside stands, farmers markets, deli meats, and cooked seafood. You should always check meat, raw fish, and poultry for freshness by reading the ‘sell by’ date on the packaging. For more information, you can view the UPMC page on food safety.




Stoma Closure


Your child may question why they have a piece of his or her intestine sticking out of their abdomen, this is a natural question and inquiry by a child. Luckily, it is very common that 6-12 months after transplant, the stoma has the possibility of closure. Stoma closure is usually a minor procedure that allows for reinstitution of continuity of the intestine with the rest of the intestinal tract, allowing for your child to pass stool out of his or her rectum. Normally, the stoma opening will close on its own and heal without complications. Once the stoma is closed, maintenance surveillance biopsies will have to be conducted through a colonoscopy or endoscopy, since a stoma will no longer be available for ileoscopies. Please note: Not every transplant center will create a stoma with transplant. Please consult your team to determine what the plan for your child.




Activity and Exercise


In the hospital, your child may be given an exercise routine by a physical therapist. The exercise will focus on different components of exercise, including:

  • Aerobics: Works on getting the heart rate up and condition the lungs and respiratory system, helping to increase your child’s stamina.
  • Flexibility: This helps to reduce stiffness and increase muscle stretching.
  • Strengthening: This helps your child build muscle strength.
You can continue this exercise regimen once you go home to keep your child active and continue to increase their strength and stamina. For the first three months after your child's transplant, heavy lifting and vigorous sports are restricted. By one-year post-transplant, your child should be able to return to most regular sports. Some sports like football, hockey, and wrestling should be avoided. They involve direct, rough contact which could cause injury or internal damage. Other physical activity is encouraged, as well. Routine childhood activities like biking, swimming, t-ball and hiking should be resumed within the first year depending on your child's rate of recovery and the reccomendations of your transplant team. It is important to note that if your child experiences any pain or shortness of breath during activity to inform them to stop the activity. If the symptoms persist, call your transplant team right away. It is also important to realize that your child will still tire more easily than other children his or her age. Even though they may feel better than they did before, their body is still healing from a major operation. It is normal for your child to want days of rest or ‘non-activity’ days. Do not see these days as a set-back or as a day to make you worry. If your child has multiple days of rest in a row and it seems as though their energy level has taken a complete 180, then it may warrant a call to the transplant team to make sure something else isn’t going on.




Infection Prevention


Your child is taking immunosuppressant medications which weaken his or her immune system and increase their risk for infection. 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. To decrease the risk of infection, your child should follow these guidelines:

  • Maintain general health through nutrition, rest, exercise, and stress reduction.
  • Avoid people who are sick, especially with known viral infections like COVID-19, chicken pox, measles, mumps, mononucleosis, colds, or the flu.
  • Take your medications as prescribed, particularly prophylactic medications and immunosuppression.
  • Contact your transplant coordinators at the first signs of infection.
  • Take recommended antibiotics prior to any dental work. Contact your transplant coordinator for your child’s particular recommendations.
  • Always wash your hands before you eat or drink or take any medications.
  • When in the public restroom, turn the water off and open the door with a paper towel after drying your hands.
  • Avoid gardening, or if you and your child chose to garden, wear a mask and gloves.
  • Cover your entire body, including arms and legs, when hiking.
  • Do not receive any live vaccinations.
  • Receive the flu vaccine every year.
  • Help your child remember to avoid touching their eyes, mouth, nose, and face when their hands are not clean.
  • Get tetanus shots when needed and in the event of a ‘dirty cut.’
  • Do not share razors, toothbrushes, eating, or drinking utensils.




Sun Safety


Sun exposure happens all year, not just during the summer. The best way to prevent skin damage is to limit the time spent in the sun. Because of side effects with your child’s medicine, he or she must use sunscreen. Choose one with an SPF of 30 or higher. Use it often, even if your child will only be in the sun a short time. To prevent sunburn, your child should:

  • Wear clothing that protects his or her skin, such as a hat, long pants and long sleeves.
  • Put sunscreen on exposed skin 30 minutes before going outdoors and put it on again as the package directs—this usually means you need to put it on every two hours and after playing every two hours and after playing in the water.




Returning to School and Daycare


Talk to your transplant coordinator about when your child will be ready to return to school, preschool or day care. The transplant coordinator can also advise you of any special plans that may be needed. The goal for all transplant children is to attend school full time. This helps your child keep up with learning, socializing and physical activities. Your transplant center may offer a hospital school program to help with studies when your child is in the hospital. Your transplant coordinator, social worker or hospital school program coordinator usually can help you with plans for your child’s return to school. This may include letters, guidelines, and options to help explain why your child may:

  • Need to return to school part time.
  • Not be able to receive certain vaccines that are needed to enroll in school.
  • Have limits on contact sports.
  • Need home-care school options for when your child is ill or unable to attend school full time.
Special Education Accommodations: When your child is facing severe health problems, other challenges may arise when it comes to his or her education. Public schools can offer services and accommodations to students who qualify in order to help them reach their fullest potential while experiencing medical situations. It is best to reach out to the school counselor at your school or refer to the county website for information specific to your child's school and school system. 504 Plan: Students can receive a 504 plan for a medical reason or for a learning process issue. The curriculum or material does not have to be modified or changed. Students can receive accommodations inside and outside of the classroom. For example, they can receive breaks when in the classroom setting. Students can have extended time in completing assignments, and the amount of assignments can be cut down if the students are showing mastery of the content. Doctors can also help the school in providing accommodations for the students. IEP (Individualized Education Program): Students need to be referred and go through an evaluation with a Child Study Team. Students who are experiencing challenges such as learning disabilities, ADHD, and emotional disorders may qualify for an IEP. If found eligible, students who are struggling to be successful in the classroom due to their disability or other health impairment can receive services through an IEP. The schoolwork must be modified, as these students cannot process the information like a general education student. These accommodations can be the same as the accommodations for the 504 plans, such as extended time on completing assignments, breaks during classroom instruction, and cutting down the workload to show mastery. Other accommodations include small group testing and read-aloud services. Homebound Services: Students who are going to be out for an extended period of time due to matters of illness, injury, or surgery may qualify for homebound services, which means that they can receive school instruction at home by a certified teacher provided by the public school system. The timing may differ from county to county, so please contact your school’s counselor for more information.





Section 3: Health Maintenance After Transplant

Dental Health


Routine dental visits should begin by age 2. Dental visits are advised every six months. Your child may need dental checks every three months if his or her medicine has caused overgrowth of gum tissue.

  • Keep your child’s teeth, mouth, and gums clean. This helps reduce the chance of an infection.
  • Make sure your child brushes and flosses his or her teeth twice a day.
  • Use a soft toothbrush and gently brush up and down. This may help keep your child’s gums from overgrowing.
  • Your child should see a dentist regularly.Please check with a transplant coordinator before sending your child to the dentist for the first time after the transplant as they may require prophylactic antibiotics prior to a dental cleaning or procedure




Hearing and Vision Care


Hearing Care Yearly hearing exams are advised. Some of the medication your child takes or may have received during the transplant can cause hearing loss. Vision Care Your child needs regular vision check-ups. Children who are on prednisone should be treated each year by an ophthalmologist (eye doctor).




Prolonging Health of the Transplanted Organ(s)


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).




Maintaining Adherence


Intestinal transplant is a major procedure. It can be very challenging at times and hard to manage. It means your child has to take a number of medications. Your child will have to change their lifestyle as well. It can be overwhelming at times, especially for a teenager. It is very important to keep working closely with the transplant team to keep your digestive system healthy. The team is there to help you during the hard times. Non-adherence means failure to follow-up or to adhere to a treatment plan suggested by your transplant team. It happens most often in children and teens between 11 and 20 years of age and even in young adults up to 24 years of age. It can cause loss of the intestinal or multivisceral transplant. The teen years are times when feelings about independence, body image, and acceptance by peers are very strong. Some of the transplant drugs cause changes in how a person looks (i.e. steroids and moon-face) and can create a problem with body image. Taking medicine throughout the day may become socially awkward as well. It can all be very frustrating for a teen. Non-adherence can happen in different ways:

  • Not taking medicine on time or as instructed.
  • Not keeping up with medical appointments.
  • Not getting needed blood tests.
  • Not taking medical advice about diet, activity, or other issues.
For more information about non-adherence, please visit this page from UPMC.




Transition of Care


Adolescents should be encouraged to learn about their condition, medications, and care at an early age (starting as early as 10-12 years). They should learn to advocate for themselves with guidance from parents/caregivers and medical providers. The gradual increase in responsibility of their needs can be monitored by parents/caregivers and the care responsibility can slowly be transferred to the adolescent as they feel more comfortable with different aspects of their care, such as taking their medications. Allowing adolescents to gradually learn how to navigate the medical system prepares them for transition into adult care and allows for a smooth transfer to the adult setting.




Helping Your Child Cope


Your child’s personality, age, support system and treatment will affect how he copes with having a transplant. When children are faced with stress, their normal behaviors may change. Your child may become more dependent on you, make act younger than their age, or may not know how to handle their feelings. Infants (birth – 12 months) Your child expects you to meet his or her needs. Your child does not understand intestinal transplant. Common issues and fears for an infant include: Fear of Separation

  • Try to be with your infant as much as possible.
  • When you do have to go, leave something of yours like a shirt, for comfort.
Fear of Strangers
  • Try to have the same people care for your child inside and outside the hospital as much as possible.
  • Limit the number of visitors and voices inside the room at once.
Development
  • Use gentle touch to comfort your child.
  • Allow your child to explore toys with their hands and mouth.
  • Sense of safety.
  • Wake up your infant before painful procedures.
  • Develop normal routines (I.e. feeding, bedtime, bathing).
Toddlers (12 months – 3 years) Toddlers begin to do more on their own, they are in the ‘me do’ or ‘no’ phase. You should help your child understand how their body works and explain the transplant in his or her terms. Fear of Separation or Fear of Strangers
  • Try to be with your toddler as much as possible.
  • When you do have to go, leave something of yours like a shirt, for comfort.
  • When leaving, tell them when you will be back.
  • Provide them with security objects, such as a special blanket or stuffed animal.
Loss of Control
  • Allow your child to make choices, but do not offer a choice when there is not one.
  • Give your toddler a job to do.
  • Allow him or her to play and be in control of the game or activity.
Loss of Normal Routine
  • Maintain normal routines (i.e. bedtime, eating).
  • Let your child play with favorite toys.
Behavior Changes
  • Give your child a safe way to express anger and feelings, such as painting or coloring.
  • Tell your child it is okay to feel angry, sad, or confused.
  • Set limits and give discipline if needed.
  • Praise your child whenever possible.
Fear of Treatment
  • Ensure your child he or she did nothing wrong, there is no one to blame.
  • Use simple pictures, words, or books to tell what will happen.
  • Tell your child what will happen just before the treatment.
Preschoolers (3-5 years) Preschoolers are at the age in which they take pride in doing things for themselves. They may get confused and may think the hospital is a punishment for something they did wrong. Fear of Treatment
  • Ensure your child he or she did nothing wrong, there is no one to blame.
  • Use simple pictures, words, or books to tell what will happen.
  • Tell your child what will happen just before the treatment.
  • Let your child play with doctor kits and safe medical supplies.
Loss of Control
  • Allow your child to make choices, but do not offer a choice when there is not one.
  • Give your toddler a job to do.
Loss of Normal Routines or Behavior
  • Praise your child for doing things by themselves.
  • Give your child time to adjust to the changes.
  • Use play or drawing/art to help your child show his or her feelings.
School Age (6-12 years) School-age children also take pride in doing these themselves. Your child is able to think in terms of cause-and-effect and is able to understand how his or her body works, but probably not in medical terms. Loss of Control:
  • Allow your child to make choices, but do not offer a choice when there is not one.
  • Give your child a job to do.
  • Let your child go to school or do schoolwork.
  • Provide games and activities.
  • Being away from friends and school.
  • Let friends visit when appropriate.
  • Have your child engage with friends and family over social media, facetime, phone calls, or writing letters.
Fear of Harm to Body or Fear of Unknown
  • Use simple words, pictures, books, or educational videos to tell your child what will happen.
  • Let your child play with safe medical supplies.
  • Tell your child what will happen a few days before the treatment and let them ask questions.
Teenagers (13 years to 18 years) Teens see themselves as individuals and want to be independent. Friends are particularly important and your child wants to be liked by their peers around them. Illness usually causes teens to mature faster than their peers around them and see things from a different point of view. Loss of Control or Independence
  • Allow your teen to make choices.
  • Let your teen be as active as possible in school and social activities.
  • Involve your teen in the treatment plan and when talking to the transplant team.
  • Have your team do as much self-care as possible.
  • Your teen should be a key player in his or her own care.
Body image or Self-Esteem
  • Talk with your teen about his or her feelings.
  • Praise your teen for things he or she does well.
  • Allow your teen to do things that make them feel good about themselves.
Loss of Privacy
  • Respect the need of your teen to do things by themselves, try not to hover.
  • Offer your teen private time, you do not to be with your teen 100% of the time, they can take care of themselves.
  • Separation from Peers
  • Provide time with peers, if appropriate.
  • Allow friends to visit and call.
  • Allow your teen to use social media outlets to connect with friends.
Concern for the Future
  • Answer questions open and honest.
  • Help your teen develop a plan for the future, but make sure it is realistic for his or her health state.
  • Help your teen engage in normal activities as tolerated.
Behavioral Changes
  • Help your teen find ways to express his or her anger in safe, productive ways.
  • Ensure your teens feeling are normal and there isn’t need for further investigation, such as anxiety or depression.
References found here.




Coping as the Family Unit


Coping with Your Feelings Since your child was diagnosed, your life has changed. A transplant brings changes to your home life, including new stresses. Every family is unique. Your family may feel fear, anger, depression and guilt. By sharing these feelings, you may find it easier to cope with change. Use your support systems around you, your family, friends, and the transplant team are there to listen and help you through this difficult journey. Fear Fear of the unknown can be overwhelming and stressful to both you and your child. You may have fears about treatment, costs, or how to help your child cope with a transplant. Talk about these fears and get them out in the open to help you work through this very difficult time. Anger You may feel angry, and this is normal. Find ways to deal with this anger: go for a walk, a run, talk to someone, color a picture, or listen to music. Do something to relieve this feeling so you don’t transfer this anger to your child or the ones you love. Guilt Parents may feel guilty because they did not know their child was sick or because they are healthy. Young children often believe they have “magical thinking” and may feel that they caused the illness. Let your family know they did not cause your child’s illness. Depression or Grief

  • Feeling sad is a normal reaction, but it can cause changes in family routine and feelings of being alone. Change can also cause grief and depression. Common symptoms are:
  • Decreased or increased eating.
  • Lack of interest.
  • Decreased energy.
  • Crying spells.
  • Headaches.
  • Tightness in the chest.
All of these feelings are common human emotions, know that you are not alone. With the support of family, friends, and the transplant team you can work through these emotions and gain coping skills to get through this difficult journey. Suggestions to help cope with your child’s illness include:
  • Avoid talking about your child’s illness in his or her presence, unless he or she is included.
  • Find a private time to talk to a close friend or spouse; do not only talk about your sick child, find other things in your life to talk about.
  • Take turns with your spouse or another person who can stay with your child in the hospital or go to clinic visits. This keeps a balance between parents and involvement in treatment.
  • Talk with parents of other children who are going through transplant
  • Attend a support group, if possible
  • Ask for help and support. You are not alone in this and you shouldn’t be. There is no reason for you to do this by yourself.
Impact of Transplant on a Marriage An illness can upset the family dynamics and any family’s life. Both parents may become emotionally and physically tired which can easily place strain on relationships and marriages. Spouses often feel angry and upset and feel that they do not have time for one another. Suggestions for coping with strains in your marriage include:
  • Assess your coping styles: Understand how your spouse deals with emotions and stress. Some people cry, others get angry, and others may withdraw. It is important to understand each other’s feelings and coping methods so you can work together and find the best way to help each other during this difficult time.
  • Talk to each other: Communications is key to a good relationship. You need to discuss your feelings, your fears, and stresses. Silence can make you feel distant from your partner. Sharing feelings and facts can help the situation and can help you make decisions.​​​​​​​
  • Change roles when needed: The stress of illness can change the roles of family members. Sometimes the mother needs a break from being caregiver and the father may need to take over for awhile or vice versa. It is important for spouses to recognize when the other may need a break.
Impact of Transplant on Siblings Siblings can feel upset, scared, or unsecure about what is happening to their brother or sister. Children of any age can sense a change in their family. Some children may feel resentment or anger toward their sibling for getting more attention than themselves. Siblings may experience problems of their own such as depression, trouble sleeping, school problems, or physical complaints. There are many ways you can help siblings when your child is going through a transplant:
  • Tell them you love them and how they are special to you.
  • Carve out special time for them in which you only spend with them and not only with your sick child.
  • Take them to the hospital and involve them in the care of your transplant patient. Help them learn about the illness and how it affects their brother or sister which may help decrease fears and bring them closer to their sibling.
  • Ask a friend or relative stay in your home when you have to leave to go to the hospital with your transplant patient rather than taking them to someone else’s house, keeping a sense of normalcy.
  • Talk with their teachers if there is a problem in school so they can have support system throughout their lives.Consider having them talk with a child life specialist, counselor, or psychologist if they are having extreme emotions.





Section 4: Additional Resources

Helpful Downloads from Transplant Unwrapped


Sign-Up or Log-In to Access: 1. Vital Sign Log: Printable handout to keep track of vital signs. 2. Input/Output Log: Printable handout to keep track of input/output records. 3. Lab Values: Printable handout to keep track of lab values and provides an explanation of each value.




Transplant Unwrapped: Learn From Others


Learn From Others: Read stories, watch interviews, and listen to audio from numerous members of the intestinal community on a variety of topics. Useful for This Section: Learn from Others- Patient Post-Transplant Reflections




Transplant Unwrapped: Support Programs


Support Programs: Visit the Transplant Unwrapped Support Programs page to get your questions answered, speak with others in similar situations, and feel well-supported during your medical journey.




Page References


References here.