Issuu on Google+

Hope lives here.

for Patients and Parents

Heart Transplant Education Manual


Welcome 3

Contents

General Information 4

The Transplant Team Where to Go Important Phone Numbers

The Transplant Process 7

Pre-transplant Evaluation

The Waiting List 9

The UNOS Donor Matching Process About the Donor

While You Wait

11

Time for Transplant

12

Preparing for Surgery During Surgery After Surgery

After You Go Home

15

Precautions Clinic Visits Incision Care Physical Activity Nutrition Regular Pediatric Care Biopsies

Complications After Transplant

21

Rejection Infection Transplant Coronary Disease (Graft Vasculopathy) High Blood Pressure Diabetes

Medications After Transplant

25

General Guidelines for Medications Immunosuppressant Medications

Life After Transplant

29

Medic Alert Bracelets Returning to School Pets Piercings and Tattoos Transition to Adult Care Resources

When to Call the Transplant Team

32


Welcome to the Heart Transplant Program at

The Children’s Hospital of Philadelphia. You have been told that your child may need a heart transplant. In general, heart transplant may be offered to patients who have end-stage cardiovascular disease. This means that the chance of survival is poor without transplantation. A heart transplant is performed when a heart injury can’t be treated by any other medical or surgical means. It is reserved for those individuals with a high risk of dying from heart disease. Some illnesses in a child that may cause a need for transplant include: • Structural abnormalities found at birth (heart defects, also called congenital heart disease) • Cardiomyopathy (abnormal heart muscle) • Tumors of the heart • Myocarditis (inflammation of the heart caused by viruses or bacteria) It is important to realize that your cardiologist may refer your child to our program for transplant evaluation before the transplant is needed. This is because the wait for heart transplant may be long. Whenever possible, it is best to start the process before the need for a transplanted heart becomes an emergency. This handbook was designed to: • Give you and your family an outline of the transplant process • Answer some common questions • Help you to know what to expect after your child’s heart transplant

The Children’s Hospital of Philadelphia is one of the top pediatric cardiac care providers in the nation.

3


The Heart Transplant Program: General Information The Transplant Team The transplant surgeon is the doctor who performs the heart transplant surgery and continues to follow your child’s progress while she is in the Hospital. This doctor works in conjunction with the transplant cardiologist. The transplant cardiologist is the doctor who manages your child’s care before and after transplant. This doctor has special training in heart transplantation. Your child will continue to be seen by the transplant cardiologist for follow-up appointments after discharge from the Hospital. The anesthesiologist is the doctor who monitors your child during surgery and other procedures. Your child will be given a special medicine (anesthesia) that allows her to be in a deep sleep so she cannot see, hear or feel anything. CHOP has a team of anesthesiologists who are specially trained to care for heart patients. Transplant nurse practitioners are advanced practice nurses who care for your child before and after transplant. The nurse practitioner (NP) works in conjunction with the transplant cardiologist, and will follow your child’s progress in the Hospital and during each outpatient visit after discharge. An NP is available 24 hours a day for urgent problems. Respiratory therapists help your child with breathing. They give breathing treatments and work with the breathing equipment your child might need, such as a ventilator. Registered dietitians/nutritionists see your child before and after transplant to evaluate diet and growth. Many children with heart disease are not able to maintain their weight. Nutritionists can help with the many issues that contribute to poor weight gain. Physical therapists and occupational therapists are specially trained to help your child with exercises to make her body stronger before and after transplant. These therapists will help your child move with games and other activities right in your child’s room. Transplant psychologists assess your child’s and family’s coping skills and patterns before transplant. They can also help with support and counseling after transplant.

Child life specialists help your child and family, including siblings, understand why your child is in the Hospital. They provide activities and services that help your child deal with the experience in ways that are healthy for her age. The child life specialist helps prepare your child for surgery and answers questions before and after surgery. Social workers help patients and families deal with all aspects of a heart transplant, including waiting for a heart, the Hospital stay, discharge and aftercare. Social workers will help you access the services and resources you and your child need while in and out of the Hospital. School program teachers are Hospital staff members who are certified teachers. They help your child keep up with schoolwork so the transition between Hospital, home and school will be easier. CHOP’s classroom is on the sixth floor of the Main Building. Transplant financial counselors help you with your insurance plan. They can assist you in obtaining insurance approval for hospitalizations and procedures, including the transplant surgery.

Where to Go Transplant Clinic visits: Third floor, Main Building (Cardiology Clinic) Cardiac catheterizations and biopsies: Cardiac Procedure and Recovery Unit (CPRU), sixth floor, Main Building Intake Center for pre-visit testing prior to procedures: Third floor, Main Building (adjacent to Cardiology Clinic)

Important Phone Numbers: The Children’s Hospital of Philadelphia main number: 215-590-1000 The Children’s Hospital of Philadelphia Transplant Office: 215-590-6051 On-call transplant nurse practitioner/emergency pager: 877-298-6678 Scheduling Center (for clinic visits and procedures): 877-77-HEART (877-774-3278)

4

The Connelly Resource Center for Families: 215-590-4968

5


Heart transplant is not simply a surgical procedure and is not a cure. Your child will need lifelong follow-up care, and will be on medications for the rest of his life. There are many steps in the transplant process, including an evaluation, a waiting period, a Hospital stay and care after surgery.

The Transplant Process Pre-transplant Evaluation In order for your child to be considered for a heart transplant at CHOP, he must be evaluated here. The pre-transplant evaluation includes a series of tests to help doctors decide if a heart transplant is the best option. This can be done while your child is in the Hospital or during outpatient visits. During the evaluation process, you will meet with the transplant cardiologists, nurse practitioners, psychologists and social workers. Transplant evaluation includes: • Routine medical exam – height, weight and blood pressure; review of medical history, including family history and previous surgeries; review of current medications • Blood tests – Blood type, to check whether your child’s blood is A, B, AB or O – Tissue type markers – Blood counts, such as red and white blood cell counts – Blood chemistry, to check the function of other organs like the liver and kidneys – Checks for viruses • Echocardiogram (“echo”) to look at the heart’s structure and see how well it is functioning • Cardiac catheterization (“cath”) to measure the pressures inside your child’s heart – Cardiac cath is another way to look at the heart’s structure and see how well it is working. – The catheterization may include a biopsy to gather more information about your child’s heart disease. • Psychosocial evaluation. Your family will meet with the transplant psychologist and social worker to identify areas where you may need extra support.

Sarah, photographed just minutes before she was taken to the operating room for her heart transplant.

After the evaluation is complete, the transplant team will discuss the information gathered about your child to determine whether heart transplant is the best option. You may be told that a transplant is not the best option for your child at this time. In that case, we will continue to monitor your child to decide if and when transplant may be an option.

7


If heart transplant is the best option, the next step is to place your child on the waiting list for a donor heart. United Network for Organ Sharing (UNOS) is the national agency that oversees organ transplant. UNOS maintains a national computerized list of people waiting for heart transplants and works with our local procurement agency, Gift of Life, to recover organs.

The Waiting List Your child will be placed on the waiting list through the UNOS secure website. He will be listed as a Status 1A, Status 1B or Status 2. • Status 1A patients are the most critical. They are usually in the Hospital, with breathing support from a respirator, or on high-dose intravenous (IV) medications to help their hearts work better. Any child who requires a ventricular assist device (VAD), an external pump to help blood flow through the body, also qualifies for Status 1A. Children younger than 6 months old with certain heart conditions are also Status 1A. • Children younger than 6 months old who do not meet the criteria for Status 1A are listed as Status 1B. Other children in this category are those who require low doses of IV medications to help their hearts work better, or have been unable to grow adequately because of heart disease. • Status 2 patients are on the active list for transplant, but don’t meet the standards for Status 1A or 1B.

The UNOS Donor Matching Process These are the steps that result in an organ match: 1. A person has experienced brain death and his family decides to donate the heart. 2. The donor’s medical information is put into the UNOS database. 3. UNOS notifies Gift of Life and CHOP that a heart is available for a patient on the waiting list. Hearts are given to the patients with the highest status, who have been on the waiting list the longest. The donor organs are matched with patients based on blood type and body size. 4. The transplant cardiologist and surgeon review the information about the donor heart and decide whether to accept the organ. 5. You will be notified if the heart is accepted.

About the Donor

A quilt, made from our patients’ art, hangs proudly in the Cardiac Intensive Care Unit.

Families often want to know the age of the donor and how the donor died. We cannot share information about the donor. Likewise, information about your child and family will not be given to the donor’s family without your consent. If you wish, you may write a letter to the donor’s family and give the letter to the transplant team at CHOP. We will forward it to Gift of Life.

9


If your child is waiting at home for a new heart, she will be seen by the transplant team in our outpatient clinic at least once a month. Testing may include blood work, echocardiogram and electrocardiogram (EKG). If your child needs to be in the Hospital while she waits for her heart, a doctor or nurse practitioner from the transplant team will check on her daily and will be involved in all aspects of her care.

While You Wait While your child is in the Hospital, child life specialists will help her to adjust and cope. If your child cannot leave her room, they will bring activities to her. If your child is well enough, she can visit the playroom. There is a teen area in the playroom with computers and video games for older patients. If your child is school-age, a teacher will visit daily. The teacher will work closely with your child’s school to help her keep up with studies during hospitalization. Usually “school” at CHOP is one hour per day. Most children are able to keep up with their classmates. If your child is waiting at home for her new heart, you must be ready for the day you are called to come to the Hospital for the transplant: • Keep a packed suitcase ready. When preparing your child’s bag, think about what clothes and personal items you and your child would like to have with you at the Hospital (such as favorite books, toys and blankets). • Make a list of people whom you will want to notify about the transplant. • Make a note of the route you will take when coming to CHOP and how long it will take. • Have a plan for caring for your other children or family members while your child is in the Hospital. The transplant team must be able to reach you AT ALL TIMES in case a heart becomes available. It is important that the transplant team have your current phone number(s). We can also provide you with a pager.

Lauren finds ways to fill the time at Children’s Hospital while she waits for a new heart.

11


When a heart becomes available, you will be contacted via phone or pager by the nurse practitioner or transplant cardiologist. Once contacted, you and your child should come to the Hospital as quickly as possible. Your child must not eat or drink anything. We will tell you exactly which area of the Hospital to come to.

Time for Transplant Preparing for Surgery Before surgery, your child will be examined by the transplant team, including the surgeons and the anesthesiologists. Tests and procedures may include: • chest X-ray • electrocardiogram (EKG) • echocardiogram • placement of a vein catheter (IV) in the arm • blood sampling from a vein in the arm • vital signs (temperature, blood pressure, height, weight) • complete review of current medications We will obtain your consent for the heart transplant surgery at this time.

During Surgery Surgery usually takes from four to six hours. During the surgery, your child’s nurse and members of the transplant team will visit you in the waiting area with frequent updates. After surgery, the surgeon and the transplant cardiologist will talk with you. Your child will be taken to the Cardiac Intensive Care Unit (CICU).

After Surgery

12

The Cardiac Intensive Care Unit (CICU) The CICU is on the sixth floor of the Main Building, close to the cardiac operating rooms. • Your child will be in a private room after surgery. One parent may sleep overnight in the room. • After surgery, your child will be sleepy from anesthesia medications. • Your child will have IV tubes, to provide fluids and medications through the veins, and drainage tubes. • Your child will have a breathing tube, which is connected to a ventilator (respirator). The ventilator will help your child breathe until he wakes up from anesthesia, and usually stays in place for a few days. Your child will not be able to talk while the breathing tube is in place.

• There will be a large bandage covering the incision on your child’s chest and he will have one or more chest tubes. These flexible plastic tubes are passed through the skin and into the area of surgery to drain fluids. They usually stay in place for several days. • Your child will be attached to monitors to keep track of heart rate, blood pressure, breathing rate and the amount of oxygen in his blood. • You may visit your child 24 hours a day in the CICU. To protect him from exposure to infections, we ask that only immediate family members visit. Family members who have colds or have been exposed to infections may not visit.

The Cardiac Care Unit (CCU) When your child no longer needs intensive care, he will leave the CICU and will stay in the Cardiac Care Unit (CCU), where he will be able to participate in more activities. Nurses and doctors will continue to monitor his progress and will help prepare him for discharge to home. Your child will remain in a private room in the CCU. A parent may stay overnight in the room. Children in the CCU are usually feeling well enough to go to the playroom and interact with other children. Because your child will be on medications that suppress his immune system, he will have to wear a mask any time he goes out of his room (to the playroom or for testing and therapies). Your child will begin (or continue, if he has been waiting in the Hospital) physical and occupational therapy after transplant. Cardiac rehabilitation will also take place regularly before transplant, after transplant and after discharge. Prior to going home, the transplant nurse practitioners will order all medications that your child will be on, and will bring them to your child’s room. They will teach you about each medicine and give you a medication schedule to take home that shows when each medicine must be given. While in the CCU, you will be able to learn skills to care for your child after transplant.

Getting Ready to Go Home Taking your child home with a new heart can be very stressful. The transplant team will help prepare you for discharge, and will give you information to help care for your child at home. After you go home, a member of the transplant team will be available to you 24 hours a day in case you have questions or there is an emergency. If you live within a two-hour drive of CHOP, you may be discharged directly to home. If you live farther away, we may ask that you stay in the Philadelphia area. (Many families stay at the Ronald McDonald Houses in Philadelphia or Camden.) We will need your child to return to the transplant clinic frequently right after discharge. Staying close by makes this much easier.

13


Once home, it may take some time to re-establish your normal routine. If your child has spent a long time in the Hospital, it may take her even longer to adjust. Members of our psychosocial team can be very helpful after discharge, assisting you and your child with this transition.

After You Go Home Precautions For the first three months after transplant, we recommend that your child wear a mask any time she is outside the house, in public places or returning to CHOP for Transplant Clinic. Because your child’s immune system is weak, we recommend that you limit visitors to your home immediately after discharge. You should also limit taking your child to crowded public places such as malls and restaurants for the first three months after transplant. Handwashing is very important in preventing infection after transplant. You, your child and family members should wash your hands frequently. Hand-sanitizing gels are also excellent in preventing the spread of infection, and should be used frequently: before eating, after playing outside and so on.

Clinic Visits After discharge, your child will be seen frequently in our outpatient Transplant Clinic on the third floor of the Main Building. Your child will typically come to clinic twice a week (usually Monday and Friday) for two weeks, then once a week for two weeks, then every other week. Approximately six weeks after discharge, visits become less frequent. Eventually your child will come to clinic once a month, provided she’s not having any complications. These once-a-month visits will continue for the first year after transplant. At each visit, she will have blood drawn to check for infection and to monitor the amounts of immunosuppression medication in her system. She will have her vital signs checked, and will have an echocardiogram. A transplant nurse practitioner and a transplant cardiologist will examine her. The transplant psychologist will be available to help with any behavioral or coping issues. Your child might also have physical therapy and cardiac rehab sessions on clinic days. Clinic visits last for approximately two hours.

Thomas Spray, M.D., leads the cardiothoracic surgery team at CHOP, which performs among the most pediatric heart transplants in the nation.

Beyond one year after transplant, you will come to clinic less often — usually once every three months (four times a year). This schedule will continue until your child is old enough to transition to an adult doctor or nurse practitioner who has experience in caring for heart transplant recipients.

15


Important things to remember about clinic visits: • Do NOT give your child her medications in the morning, before coming to clinic. There has to be a 12-hour gap between the time your child takes medications and the time we draw blood to test drug levels. Bring all medications to clinic with you. Your child can take them immediately after the blood tests. • Please be on time. If you are having difficulty making it to your appointments on time, let the team know. We can help make it more convenient for you.

Incision Care When you go home, it will be important to keep an eye on your child’s surgical incisions as they heal. • Your child can take a shower while the incisions are healing, but the incisions should not be underwater in a bath until healed. • As the incisions heal they may itch. This is normal. Try to prevent your child from scratching by putting a tight T-shirt on her. Keep fingernails short. • Keep the area clean and dry. Pat dry after bathing. • Do not use lotions or creams on the incision. These can trap bacteria and cause infection. • Do not use baby powder or talcum powder on or near the incision. The powder can keep the incision from closing and healing. • Call the transplant team right away if you see any redness, opening of the incision or drainage from the incision. • When the incision is COMPLETELY healed, use sunscreen on the scar when your child is exposed to the sun. The scar will be sensitive and may burn easily.

Physical Activity After surgery, exercise will be an important part of recovery. A physical therapist will work with your child while she is in the Hospital, and will usually continue to do so for the first month after discharge on clinic days. Once your child has healed completely from transplant surgery (it takes approximately six weeks), there will be very few restrictions on her physical activity. For the first six to eight weeks after surgery, it is important to protect the breast bone (sternum), because it was opened during surgery. • Your child should avoid climbing, bike riding or other activities that may cause her to fall for the first two months after surgery. • She should not lift any heavy items. • She should not raise her arms above her head.

16

Once the breast bone (sternum) is healed, your child can participate in her usual activities. Regular exercise is very important for all children who have had heart transplants. It is important for weight control, blood pressure and overall well-being. When your child returns to school, she should participate in physical education classes (gym). She may feel a little more tired initially, but will gradually build endurance. The only exercise that is NOT recommended for someone after heart transplant is weight lifting, as this may put extra stress on the heart. Your child should not be “pushed” to exercise if she feels tired. When a person exercises, the heart speeds up to pump more blood and oxygen to the body’s tissues. But a transplanted heart often takes longer to speed up. This is what causes the child to feel tired more quickly during exercise. She should be allowed to rest as needed. If she experiences dizziness, shortness of breath, nausea or increased sweating during exercise, please notify the transplant team. Your child may swim in the ocean or chlorinated pools after transplant. Because her immune system will be weak after transplant, we recommend that she does not swim in lakes or ponds. There are usually higher levels of bacteria in lakes or ponds, which could cause your child to become ill.

Nutrition Your child’s diet will have some limits but generally can be normal. She should avoid foods high in cholesterol and saturated fat and should not add extra salt to food. Fast food should be limited — but it’s OK to have it occasionally. Sometimes vitamin and mineral supplements such as calcium and magnesium are added to your child’s medications to help keep her healthy. That’s because some medicines make the body lose vitamins and minerals. Maintaining a healthy weight is very important after transplant. Obesity increases the risk of diabetes and other complications. Food safety is important after transplant to help avoid infection. Your child should avoid eating raw meats or fish (sushi, for example), as those foods can carry bacteria and viruses. She should also avoid eating at buffet-style restaurants to avoid the risk of bacteria from food that is sitting out. Water is a very important part of your child’s diet after transplant. The medications she will have to take can be harmful to the kidneys if she does not drink enough water, so good hydration is essential. If you have well water, we recommend using a filter system or bottled water for drinking due to the risk of bacteria in well water. If you have city water, bottled water or filters aren’t necessary. If you are unsure of your water source, it is always safe to install a filter or use bottled water. Your child should bring a water bottle to school and drink throughout the day.

17


Regular Pediatric Care

Biopsies

After transplant, your child will continue to be seen by her regular pediatrician for all “well child” checkups and for most illnesses. She should be seen by the pediatrician shortly after discharge, so the doctor can examine her and update her chart with new medications.

After the transplant, your child will have heart biopsies regularly to check for organ rejection. Biopsies occur in the cardiac catheterization lab. A cardiologist will insert a catheter (a thin, flexible tube) into a large vein in your child’s neck or upper leg, and move the catheter to the heart. The cardiologist uses a tool at the end of the catheter to take small pieces of heart tissue. The tissue is then examined under a microscope by a pathologist to see if there is evidence of rejection. Younger children are usually put under general anesthesia for catheterization, while older children are given a mild sedative.

Your child should not receive any vaccines except the flu vaccine for the first six months after transplant. Because the immune system has been suppressed, vaccines will probably not be effective. Your child SHOULD get the flu vaccine during flu season, even if it is less than six months after transplant. Some vaccines are “live” vaccines and some are “non-live.” Live and non-live vaccines are made differently. After transplant, your child may NEVER receive ANY LIVE VACCINES. Examples include the measles/mumps/rubella (MMR) and chickenpox/varicella vaccines. Your child may receive non-live vaccines, including the flu vaccine. Make sure your pediatrician knows that your child can’t have live vaccines. Regular dental visits are also a very important part of your child’s care. Your child should have regular cleanings every six months. She may require an antibiotic prior to dental work. Please talk to your transplant cardiologist or nurse practitioner about dental visits.

18

Biopsies may be performed as often as once a week for the first month after transplant, and then less often. We will determine the biopsy schedule based on how well your child is doing and whether she has had any rejection. After the first year, in most cases biopsies occur once or twice a year. Your child will come to CHOP the day before each biopsy for testing, including blood tests, an echocardiogram and an examination by the nurse practitioner. This is called the pre-visit and takes place in the Intake Center, on the third floor of the Main Building. It is very important to be ON TIME for the pre-visit testing. The procedure may be cancelled if you are late. The evening before the biopsy, you will be called and told what time to come to CHOP. On the day of the biopsy, report directly to the Cardiac Procedure and Recovery Unit (CPRU) on the sixth floor. After the procedure, your child will remain in the CPRU for approximately two hours before she is discharged to home. The results of the biopsy are usually available the day after the procedure. You will be notified if there is any rejection.

19


Complications After Transplant Rejection Rejection happens as a natural response of the immune system, the body’s defense against foreign or unknown matter such as viruses, bacteria and some types of cancers. This natural defense system also treats a transplanted organ as “foreign” and can try to reject it. Most children have at least one episode of rejection after heart transplant. Having rejection doesn’t mean that your child will lose his transplanted heart. It does mean that your child will require medication to bring the rejection under control. Rejection is most common in the first six months after transplant. After one year, the risk of rejection decreases significantly. Rejection is most often treated with steroids (prednisone) in either oral or IV form, depending on its severity. The best way to detect rejection is by heart biopsy, which is the reason there are so many biopsies in the first year after transplant. Other ways to detect rejection include echocardiogram and physical examination. This is why it is very important for your child to come to Transplant Clinic regularly. Rejection often has no symptoms and may be diagnosed by a routine biopsy. Sometimes children will show signs of rejection, which may include: • Sudden, unexplained tiredness • Shortness of breath • Sudden weight gain • Swelling of the hands, legs, feet, face or abdomen • Inability to tolerate as much exercise as usual • Palpitations or the sensation that the heart is beating irregularly • Vomiting, nausea (stomach upset) If your child has any of these symptoms, call the transplant office (215-590-6051) or the on-call transplant pager (877-298-6678) right away. We try to prevent rejection by giving your child immunosuppressant medications, which “quiet” the immune system and prevent it from attacking the new heart. It is very important that these medications are never missed. Missing even just a few doses of medication can quickly increase the risk of serious rejection. If rejection is not treated, it can lead to permanent heart damage or even death. The Children’s Hospital of Philadelphia has performed more than 200 heart or heart-lung transplants. This expertise benefits patients such as Ricky.

21


Infection Decreasing the function of the immune system by using immunosuppressants is necessary after heart transplant, but can increase your child’s risk of infection. The risk of infection is greatest in the first three to six months after transplant. Ways to help prevent infection include: • Wash your hands. Teach your child to wash his hands after using the bathroom, playing outside, playing with pets, and before eating or taking medicines. You and other family members should also wash hands often. • In the three months after transplant, avoid being around people who are ill. • In the three months after transplant, stay away from crowds. For example, if you want to take your child to the movies, go at a less crowded time.

Transplant Coronary Disease (Graft Vasculopathy) In some cases after transplant, the coronary arteries, which supply blood to the heart tissue, become narrow over time. This is called transplant coronary disease. Narrowing of the coronary arteries decreases the amount of blood flow to the heart. Transplant coronary disease may begin as a result of rejection by the body’s immune system. (This is a different type of rejection than “rejection” of the new heart.) When you have a cut, it heals because the body recognizes that something is wrong and creates new cells and layers them in the cut until the skin is healed. In the same way, the body thinks that the “foreign” transplanted coronary arteries need to be healed, so the body layers cells in the arteries. This causes them to gradually narrow. Having frequent episodes of organ rejection (as diagnosed by biopsy) or frequent infections can contribute to the risk of developing transplant coronary disease. We check for coronary disease once a year by looking at the coronary arteries during one of your child’s biopsy catheterizations. If narrowing of the coronary arteries occurs, it can lead to heart failure. There is no reliable cure for this problem, and if it occurs, re-transplant may be the only option.

High Blood Pressure Some patients will develop high blood pressure after transplant. Often, this is caused by the medications used to prevent rejection (immunosuppressants and steroids). It may be a temporary problem or may last for a long time. It can be controlled by taking medications to lower the blood pressure. Your child’s blood pressure will be checked at every clinic visit.

Diabetes

22

Immunosuppressant medications can increase the risk of diabetes in heart transplant patients. Though this may not be totally preventable, you can do things to decrease your child’s risk of developing diabetes; he should maintain a healthy weight, exercise regularly and make healthy food choices.

Signs of infection may include: • Fever greater than 99° Fahrenheit • Chills, sore throat, ear pain • Nausea, vomiting, diarrhea • Productive cough – a cough that produces sputum (mucus) • Burning feeling with urination • Redness or swelling around a cut or wound • Rash If your child has any of these symptoms, call the transplant office (215-590-6051) or the on-call transplant pager (877-298-6678) right away.


After a heart transplant, your child will need to take several medications daily. Some of these medications will only be taken for a short time, and some will be needed for the rest of your child’s life. The success of your child’s transplant depends on taking these medications daily.

Medications After Transplant General Guidelines for Medications The transplant team will give you a medication sheet with the names of the medicines, the dosages and times when they should be given. Carry a copy of this list with you at all times, and bring it with you to all clinic and emergency room visits. If your child vomits within 20 minutes of taking his medications, give the medicine again. If your child vomits again, please notify the transplant team for further guidance. If your child vomits more than 20 minutes after taking his medications, do not give the medicine again, he has probably already absorbed it. Keep medications in labeled containers or in the original containers, even when traveling. Always check the expiration date on all medicines. Always have prescriptions refilled 5 to 7 days before the medicine will run out. This allows time for the pharmacy to order a new supply of the medicine if needed, or to call the transplant office if a new prescription is required. Your child may take acetaminophen (Tylenol®) according to the directions on the package. Do not give Tylenol often for several days at a time, as it may alter the function of the liver. Your child may NOT use ibuprofen (Motrin,® Advil®). These medications may affect kidney function when used in combination with immunosuppressants. Your child should never take herbal supplements, even if they are “over the counter.” They can interfere with the other medicines your child is taking. If you travel, always carry your child’s medications with you, not packed away in luggage. If you are carrying liquid medications onto an airplane, the transplant team will give you a letter stating the need to have these medicines with you at all times.

Transplant recipient Sarah adorned her IV pole with beautiful beads as she waited for a new heart.

25


Medications continued Do not give any other medications to your child unless you check with the transplant team. These include aspirin, antacids, laxatives, antidiarrheal medicines, cough and cold medicines, and antibiotics. These can interact with the transplant medicines and cause serious side effects. If your pediatrician prescribes a medication for your child, he should speak first to a member of the transplant team (by calling the office or the on-call emergency pager) to be sure it is safe.

Immunosuppressant Medications Your child will need to take medicines to weaken the immune system after transplant and for the rest of his life. These medications prevent the body from rejecting the new heart. It is very important that these medications be given AS DIRECTED. These medicines may be in pill or liquid form, depending on your child’s age. The transplant team will closely monitor the level of these medications in your child’s blood, to ensure he is getting enough medicine to prevent rejection, but not too much. Too much medicine puts your child at risk for infections. It is important that these medicines are given in the same way each day. For example, you may give them before meals or with food, but it should be consistent each day. Before your child is discharged, the nurses and transplant nurse practitioners will teach you about each and every medicine that your child will be taking. We will provide information about side effects, dosing and other topics. The transplant team will make sure that you are comfortable giving every medicine before your child is discharged.

26

Joey, transplant recipient, enjoys fishing at Dragonfly Heart Camp for children who have had a heart or heart-lung transplant.


It is our hope that after your child receives a heart transplant, she will go on to have a very good quality of life, doing most of the things that any other child her age can do. There will be more visits to doctors and hospitals than most other children experience, but usually children who receive heart transplants can do just about any activity they want. Many of our heart transplant patients are runners, swimmers, dancers, soccer players, baseball players, artists and musicians! They attend school regularly and go on to college.

Medic Alert Bracelets Every child who has received a heart transplant should wear a medic alert bracelet, necklace or anklet to indicate that she has received a heart transplant. These bracelets can be purchased online or by mail. There are different options. One option allows you to keep your child’s medical information, such as current medications, in an online database so that in an emergency it can be easily obtained. Another option is to just indicate “Heart Transplant” on the bracelet and to include the phone number of our emergency pager. Please talk to the transplant nurse practitioners to find out if there is any other important information to include on your child’s bracelet.

Life After Transplant Returning to School Because your child’s immune system is very weak right after transplant, we recommend that she stay out of school for the first three months after surgery. During this time, we will help you to set up homebound education for your child. A teacher will usually come to your home daily for one or two hours of instruction. Once your child returns to school, she will no longer need to wear a mask and she will be able to participate in all activities, including physical education (gym).

Brendan,16, photographed five months after his heart transplant.

We can send a letter to your child’s school when she is ready to return, explaining that her immune system is weakened. We will instruct the school to notify us if there are any outbreaks of infectious diseases (such as chickenpox) in the school. We will explain that your child may not receive live vaccines. We will provide our emergency contact numbers if there is a need to reach the transplant team during the school day.

29


Pets

Transition to Adult Care

After transplant, your child is at a higher risk for infections. Most family pets are perfectly safe to have in the house and for your child to be around. Cats and dogs should be kept up to date on vaccinations. After transplant, your child should not clean or handle the cat litter box, as there is a risk of her getting a certain bacteria (toxoplasmosis) that is sometimes found in the stool of cats.

When your child becomes a teenager, we will begin to teach her what she will need to know to manage her health in the future. This teaching will continue until she reaches 18, when her care will be transferred to an adult heart transplant team of your choice. There are many adult heart transplant programs in the country, and your CHOP transplant team can help you find one for your child when the time comes.

We recommend that you do not have any reptiles as pets. They may carry bacteria called salmonella, which could cause your child to get sick. Your child may handle reptiles or other animals at a zoo or museum, but must clean her hands well with hand-sanitizing gel or soap and water afterward.

Piercings and Tattoos Your child should not get any ear or body piercings or tattoos until you speak with one of the transplant doctors. These are not necessary medical treatments, and they could put your child at risk for infection.

Here are some of Lauren’s stuffed friends that she’d take with her on Hospital corridor rides.

Resources Gift of Life Donor Program 401 N. 3rd St., Philadelphia, PA 19123 800-DONORS-1 www.donors1.org

United Network for Organ Sharing (UNOS) P.O. Box 2484, Richmond, VA 23218 www.unos.org

31


When to Call the Transplant Team Please call the transplant office (215-590-6051) or the on-call transplant pager (877-298-6678) any time you have questions or concerns about your child’s health. Call immediately if your child has: • Sudden weight gain • Swelling of the hands, feet or face • Irregular heartbeats (palpitations) • Cough, trouble breathing or breathing that is faster than usual with signs that your child is struggling (flaring of the nostrils, grunting) • Nausea, stomach pain or a decrease in appetite that lasts longer than 24 hours • Diarrhea or vomiting • Blood in the urine or stool • Painful urination • Decrease in urine output (for babies, fewer wet diapers) • Tiredness or an increase in naps • Constant headaches or flu-like symptoms • Fever greater than 99° Fahrenheit • Any unexplained rash • Dizziness or fainting

32

In case of an urgent concern or emergency, call 911 or take your child to the nearest emergency department immediately. Please notify the transplant team as soon as possible if your child requires an emergency room visit.

Heart transplantation is a journey. We will be with you every step of the way.


On the cover: Evett, heart transplant patient, at the CHOP patient prom

This booklet was made possible by funding from Big Hearts to Little Hearts, a nonprofit organization devoted to supporting research, patient education and care at the Cardiac Center at The Children’s Hospital of Philadelphia. A “heartfelt” thank you!

Awesome work: Students at Richard L. Rice Elementary School in Marlton, N.J., held fundraisers in honor of a heart transplant patient at CHOP. Their efforts helped us produce this booklet, which will help many patients and families. Thank you!

Hope lives here.

heart.chop.edu • 215-590-4040


Heart Transplant Education Manual for Patients and Parents