Heart Transplant Family Handbook #1684

Heart Transplant Family Handbook #1684 (2017) The Emily Center, Phoenix Children s Hospital 1

2 (2017) The Emily Center, Phoenix Children s Hospital

Heart Transplant Family Handbook Contents Page Introduction 4 1. I can tell you why my child is having a heart transplant 5 2. I can tell you what medical tests my child is getting, and what they are for 7 3. I can tell you what to expect before surgery 9 4. I can tell you what happens in surgery 12 5. I can tell you what happens after surgery 14 6. I can tell you how to comfort my child 17 7. I can tell you our plan for when our family is feeling stressed 19 8. I can tell you what rejection is and what the symptoms are 21 9. I can tell you what is done to prevent rejection 26 10. I can tell you what infection is and what the symptoms are 27 11. I can tell you what is done to prevent infection 31 12. I can tell you why handwashing is important 33 13. I can tell you about the medicines my child needs to take 35 14. I can tell you why my child has to take these medicines 38 15. I can tell you what side effects of medicines to look for and what to do 39 if I see them 16. I can tell you where to get, how to store, and what to do if my child 43 misses a medication 17. I can tell you my child s fluid and diet plan 45 18. I can tell you what my child is able to do 47 19. I can tell you the phone number of my child s doctor and when I 50 would call 20. I can tell you about my child s follow up appointments 52 (2017) The Emily Center, Phoenix Children s Hospital 3

Introduction When a child is diagnosed with a serious condition, parents often feel stress and loss of control because they do not understand everything that is happening. However, once they learn about the illness and master home care skills, parents get their sense of control back. Perhaps you, too, are feeling stressed and overwhelmed because you need to learn about your child s heart transplant. This information may seem like too much to handle right now, but don t give up. Like other families, you will also be able to take care of your child. We are here to help. First, understand there is nothing you or your child did that caused your child s heart problems. In the hospital, we will explain the basics about your child s heart transplant and show you how to safely care for your child at home. The Journey Board shows you all the topics to discuss. Your child s caregivers will need to be at the hospital to learn the basics to care for your child. We will help you become comfortable and confident in your ability to take care of your child after your child s heart transplant. A heart transplant is a treatment option, not a cure. In caring for your child s new heart, your child will need to follow many precautions, restrictions, daily medications, and frequent follow-ups. 4 (2017) The Emily Center, Phoenix Children s Hospital

1. I can tell you why my child is having a heart transplant What is a heart transplant? A heart transplant is an operation that replaces your child s diseased heart with a healthy heart from another person. A heart transplant is recommended for children who have a serious heart dysfunction and will not live without having their heart replaced. A heart transplant is offered to help a child live longer and improve the child s quality of life. Heart transplants are offered when no other medical or surgical options are available to fix a failing heart without serious risk. Having a heart transplant has its risks and benefits. A child may need a heart transplant for several reasons, including: Cardiomyopathy (weak heart muscles) Congenital heart disease (heart disease that a child is born with) that cannot be operated on without serious risk Continued heart problems following surgery for congenital heart disease, such as leaky valves or the heart still not working properly Life-threatening abnormal heart rhythms that cannot be controlled any other way. If your child has one of these problems your child s cardiologist will consider referring your child to a heart transplant team. The team will assess your child for a heart transplant. This team looks at your child and considers if your child: needs a heart transplant needs a heart transplant right away is able to have a heart transplant. (2017) The Emily Center, Phoenix Children s Hospital 5

What is an immune system? The immune system is the body s way to protect it from infection and disease. White blood cells and antibodies are part of this system. They identify non-self cells in the body and attack. They attack bacteria, viruses, fungi, and parasites. They also attack a transplanted organ, which causes rejection. The T-cell (T-lymphocyte) is a type of white blood cell that attacks viruses and other infections. It is also the type of cell that attacks the transplanted organ and causes rejection. The B-cell (B-lymphocyte) is another type of white blood cell that is involved in the immune and rejection process. Its role is to produce antibodies. Medications are used to suppress the response of T-cells and B-cells and control rejection. They are called immunosuppressants. Examples of immunosuppressants include: Tacrolimus, Sirolimus, Cyclosporine, Mycophenolate, and Prednisone. Immunosuppressants make the immune system not work as well, which decreases the chance of rejection. It also makes the body more at risk of infection and decreases the body s ability to fight infections. Your child s transplant team will closely monitor your child s medications. The goal of your child s medications is to reduce the chance of rejection and keep the rest of your child s body healthy. Now that you ve read this: r Tell your nurse or doctor why your child needs a heart transplant. r Tell your nurse or doctor what the medical terms mean. 6 (2017) The Emily Center, Phoenix Children s Hospital

2. I can tell you what medical tests my child is getting, and what they are for What are the blood tests that my child needs? Your child will need several different blood labs, including: general clinical labs, labs specific to the heart, infectious disease history, panel reactive antibody, and human leukocyte antigens. The antibodies levels can show if your child has a higher risk of rejection. The tests will also show compatibility markers that will be compared to the markers from the donor heart. The antibodies may make it harder to find a matching donor. These tests can also help predict if your child might have to wait longer for a donor heart. What are the infection-related tests that my child needs? Your child will need to have blood and skin tests to check if your child has been exposed to different infections. These labs will show which communicable disease your child is immune to, and if your child needs any vaccinations. What are the heart tests that my child needs? Your child will need an echocardiogram (ECHO). An ECHO measures how well your child s heart is working. It can show any heart structures or blood flow problems that may make a heart transplant difficult. Your child will need an electrocardiogram (ECG). This test shows the rate and regularity of your child s heart beats. Your child may need a cardiac catheterization. This tube is placed in the blood vessels of the groin or neck. During this test, a tube (catheter) is put in your child s blood vessels and guided into your child s heart. Using this tube and an x-ray machine, your child s doctor can learn much about your child s heart. Your child may need a magnetic resonance imaging (MRI) or computer tomography (CT) test. These tests look at your child s heart chambers and blood vessels. (2017) The Emily Center, Phoenix Children s Hospital 7

What are some other tests that my child needs? Your child may need a pulmonary function test. This tells us how well your child s lungs are working. Your child also may need tests on the liver and kidneys to see how well they function. Sometimes, ultrasounds are done to check the liver, kidneys, and blood vessels to make sure there are no blood clots or blockages. Your child may also have a psychosocial evaluation. This helps identify resources and readiness for post-transplant care. This may include identifying your family s support system, financial resources, ability to come to follow-up appointments, and willingness to make the required lifestyle changes. Your child will need a dietary evaluation. This helps show your child s baseline nutrition status. It will also give you recommendations to optimize your child s health while on the transplant waiting list. For more information, ask your child s doctor or nurse for these handouts: Echocardiogram (ECHO) #513 Electrocardiogram (ECG or EKG) #511 Magnetic Resonance Imaging (MRI) #94 Computer Tomography scan (CT Scan) #93 Cardiac Catheterization (Cardiac Cath) #512 Now that you ve read this: r Tell your nurse or doctor the name of the tests, how the tests are done, and what the tests are looking for. r Tell your nurse or doctor the meaning of the results of your child s tests. 8 (2017) The Emily Center, Phoenix Children s Hospital

3. I can tell you what to expect before surgery What is the heart transplant waiting list? If your child is a candidate for a heart transplant, the transplant team will decide how quickly your child needs a heart transplant. They will also decide when to put your child on the heart transplant waiting list. Your child will only go on the transplant waiting list if the transplant team agrees that it is the best option for your child and you agree for your child to have the transplant. Your child s information will be placed on the national transplant waiting list. The waiting list includes details about your child, such as: blood group, weight, and height. Your child will be given a listing status. This status is based on: your child s current medical condition how much medical support your child needs for his or her condition Your child s listing status can change over time based on how well your child is doing medically. Each country has its own system in deciding when a child is placed on the transplant waiting list. Most countries have a system meeting the needs of the sickest children first and make sure organs are given fairly. In the United States, the United Network for Organ Sharing (UNOS) manages the transplant waiting list. There are 3 active status levels (1A, 1B, and 2) and 1 inactive level (7). Status 1A: A child meets at least one of the following conditions: needs help breathing with a ventilator needs support with a mechanical device such as ECMO or ventricular assist device (VAD) is less than six months old with heart disease and needs continuous prostaglandins (PGE) has a hemodynamically significant congenital heart disease, requires infusion of multiple IV inotrope or high dose of single IV inotrope and admitted to hospital Status 1B: A child meets at least one of the following conditions: 1. Requires infusion of one or more inotropic agents and does not qualify for 1A 2. Is less than 1 year old at time of registration and has diagnosis of hypertrophic or restrictive cardimyopathy (2017) The Emily Center, Phoenix Children s Hospital 9

Status 2: A child needs a heart transplant but does not meet criteria for Status 1A or 1B. Status 7: A child is inactive on the transplant list (either because the child is too sick or too well to accept an organ). How does the transplant team find a heart? Finding a heart for your child is called organ matching. When trying to find a match for your child, the UNOS organization considers: The donor s blood group The donor s weight and height The donor s age How quickly the organ can be transplanted once it is removed from the donor (including travel and operating time) If your child has any antibodies that could attack the donor heart. Hearts are matched to the person according to the wait list status, with the sickest patients getting organs first. How long will my child wait for a heart transplant? There is no way to know how long your child will wait for a donor heart. The wait can be anxious and emotional. It is important for you to continue to find balance and a sense of normalcy for yourself, your child, and the rest of your family. What should we do while we wait for a heart transplant for my child? Transplants can happen at any time, day or night. It is extremely important that the transplant team has all your contact information so they can reach you. Make sure they have your current phone numbers, including home, cell, work, and school. If you have a cell phone, keep it charged and with you at all times. If you do not have a cell phone, some transplant centers can give you a pager so that you can be reached 24 hours a day. You will need to be ready to leave your home as soon as possible when the transplant team tells you an organ is available. Make sure you plan well in advance, including: 10 (2017) The Emily Center, Phoenix Children s Hospital

having a babysitter or child care for any other children. making sure you have transportation available organizing how to tell other family members, such as telling one person who can then tell others packing a bag for the hospital stay ahead of time. Make sure to include: toiletries, pajamas, and some of your child s personal items (such as a favorite blanket, stuffed animal, pictures that your child likes). If you need to travel, make sure to notify the transplant team before you go. It is important for your child to stay healthy while waiting for the heart transplant. If your child s heart becomes too weak, your child may need to be admitted to the hospital. Your child may need IV medicine to help your child until the heart transplant. Now that you ve read this: r Tell your nurse or doctor how the team decides if your child can get a new heart. r Tell your nurse or doctor what the heart transplant list is and what status your child is on the list. r Tell your nurse or doctor how the transplant team gets a heart. r Tell your nurse or doctor how the transplant team will contact you about a heart for your child. r Tell your nurse or doctor what you need to do while you are waiting for a new heart. (2017) The Emily Center, Phoenix Children s Hospital 11

4. I can tell you what happens in surgery When a heart is available for your child, the doctors will need to first inspect it. The doctors want to make sure that the donor heart is high quality for your child. Sometimes, the doctors will decide the donor heart is too damaged to be used. If this happens, the surgery will be called off. This can happen when you and your child are already in the hospital preparing for the surgery. This is called a dry run. If this happens, your child will stay on the waiting list. This can be very disappointing but the doctors want to get a healthy donor heart for your child. Before your child has surgery, your child will need a bath. Your child s skin will also need to be wiped with CHG wipes. These wipes help decrease the bacteria on your child s skin and decrease the risk of infection. For more information, ask your child s doctor or nurse for CHG handouts, based on your child s weight. (THIS IS MOVED FROM PAGE 13) Your child will not be able to eat or drink after a certain time. Your child s nurses will tell you what time your child needs to stop eating and drinking. Your child will need to have an IV placed. Your child will get IV fluids through this IV to keep hydrated. What happens when my child goes to surgery? Once the donor heart is ready, your child will go to surgery. When your child enters the operating room, your child will lie on a special operating room bed. The nurses will attach EKG stickers to your child s body. Your child will have a pulse oximeter probe (pulse ox) and a blood pressure cuff on an arm. These devices will help the surgery team monitor your child closely during surgery. Your child will get general anesthesia and will be asleep during surgery. The doctors will put in a breathing tube to help your child breath. Your child will also have a urine catheter (foley) placed during surgery. A foley drains the urine from your child s bladder. Your child will not feel any pain during surgery. Your child s doctors will make an incision on the breast bone (sternum). This incision will be about 4-8 inches, depending on the size of your child. Your child will be placed on a heart and lung bypass machine (cardiopulmonary bypass). This machine does the work of the heart and lungs during surgery. Your child may need 12 (2017) The Emily Center, Phoenix Children s Hospital

one or more chest tubes. A chest tube helps drain blood, fluid, or air from around your child s lungs or heart. This allows your child s lungs to work correctly after surgery. Your child s doctors will remove your child s heart and attach the new heart carefully. The surgery takes about 4 to 8 hours, depending on the type of heart disease your child has. Sometimes complications happen, and this can make the surgery longer. The doctors will turn off the cardiopulmonary bypass machine to make sure the new heart is working correctly. Sometimes, the doctors do an ECHO during surgery to see how the new heart is working. The doctors will make sure the new heart is working correctly before finishing the surgery. Once the doctors determine the new heart is working correctly, they will move your child to the Cardiovascular Intensive Care Unit (CVICU) for recovery. Where do I wait during my child s surgery? You and your family members will be shown where to wait while your child is in surgery. Someone should stay in this area the entire time your child is in surgery. If possible, you will be updated by the doctor or nurse during your child s surgery. Now that you ve read this: r Tell your nurse or doctor what surgery your child is having. r Tell your nurse or doctor what a dry run is and what it means for your child. r Tell your nurse or doctor what will happen in the operating room. r Tell your nurse or doctor how long the surgery your child is having may take. (2017) The Emily Center, Phoenix Children s Hospital 13

5. I can tell you what happens after surgery What happens when my child goes to surgery? Your child will be taken to the Cardiovascular Intensive Care Unit (CVICU) after surgery. When your child first arrives, it usually takes an hour or two to settle in. Your child s nurse or doctor will tell you when you can visit. Your child will be attached to many monitors and tubes. It might be overwhelming at first. Your child s nurse or doctor will explain these monitors and tubes to you. Make sure to ask any questions you might have. Monitors: Your child will have a breathing tube (endotracheal tube) in place to help your child breathe. Your child will also be on a breathing machine (ventilator) until your child is fully awake. Your child will be sedated while on the ventilator, allowing your child to be comfortable and relaxed. It usually takes a day or two for older children to breathe on their own, but it can sometimes take a little longer for babies. Your child s blood pressure, heart rate, heart rhythm, and blood oxygen levels will be monitored closely. Devices and tubes: Most children return from the operating room with a temporary pacemaker wires in their chest. These wires are placed to allow the doctors to help your child if the new heart is not working correctly. Your child will have one or more chest tubes placed. These tubes help drain fluid, blood, and air from the chest after surgery. These tubes usually stay in place for several days after surgery. Your child may have a salem sump in the nose. This tube is inserted through your child s nostril and then passed down into your child s stomach. This tube removes the air from your child s stomach if needed. Your child may have at least one central line in place for intravenous (IV) treatments. 14 (2017) The Emily Center, Phoenix Children s Hospital

The doctors usually put it in your child s neck, arm, groin, or chest. These lines help give your child fluids, medications, and nutrition that your child needs. Your child will have a bladder catheter (foley) in place to drain the urine from the bladder. It usually stays in place for several days. If it makes your child uncomfortable, the nurse can give your child medicine. Your child s incision: Your child will have an incision (cut) along the length of the sternum (breastbone). This is called a sternotomy and will have a dressing covering it. After a few days, the dressing will be removed. It also will be changed if it becomes soiled. Your child will either have staples (wires) or sutures (thread stitches) to close the incision. Sometimes, the doctor does not close the incision right away. If this happens, your child will go back to the operating room in a day or two when your child is more stable. Your child will have the incision covered with a cloth or other dressing until it is closed up by the doctor. What will I see as my child begins to heal from surgery? As your child recovers from surgery, the medical team will decrease the medications your child is taking. The medical team will begin to remove the lines and monitors as your child heals. Once your child is off the ventilator (extubated), your child will be able to speak. To try to prevent pneumonia, your child will need to cough and deep breathe. Your child will be shown how to fill his or her lungs with air using a special tool called an incentive spirometer. Your child will be encouraged to walk around. Walking around will help prevent pneumonia, infections, blood clots, and dry, hard stools (constipation). Sometimes it helps if your child hugs a pillow against his or her chest when moving in and out of bed and when coughing. Your child will be given enough medicine to help with pain after surgery. When your child is ready to get out of bed, a physical therapist (PT) will help. Other team members, such as an occupational therapist (OT), dietician, pharmacists, and other transplant team members will also be involved in your child s care throughout the hospitalization. (2017) The Emily Center, Phoenix Children s Hospital 15

Some children begin to feel better right away. Other children may take longer to heal. There is always a chance for problems after surgery (complications). Complications can happen soon after surgery, or after your child leaves the hospital. Your doctors and nurses watch for problems and treat them. We cannot say how long your child will stay in the hospital. Each child is different. If your child is doing well, he or she may go home in one to two weeks. If there are complications, your child may need to stay in the hospital longer. Visitors: Parents can visit at any time. One parent may spend the night with the child. Friends and family may visit you from 8:00 AM to 8:00 PM each day. If the room is too crowded for the child to rest or be cared for, the nurse may ask some visitors to leave. During the winter the hospital does not allow visitors under 12 years old. The rules will be posted in the hospital and on the website (www.phoenixchildrens.org). Visitors who think they have a cold or flu are asked to stay away until they are well. Cut flowers and plants potted in soil cannot be in the room. The hospital does not allow latex balloons. Now that you ve read this: r Tell your nurse or doctor what your child will look like after the surgery. r Tell your nurse or doctor how your child will be monitored after surgery. r Tell your nurse or doctor what you will see as your child begins to heal from surgery. r Tell your nurse or doctor why your child needs to cough and deep breathe after surgery. 16 (2017) The Emily Center, Phoenix Children s Hospital

6. I can tell you how to comfort my child Will my child have pain after surgery? Your child will have pain after surgery. Each child responds to pain differently. You can help your child understand and cope with the pain. You can also work with your child s health care team to create a pain management plan for your child. Your child s health care team will work with you to decide the best way to keep your child s pain under control. Your child may have a patient-controlled analgesic device (PCA). A PCA can either give your child pain medicine all the time (continuously) or your child can press a button when feeling pain (called a demand dose). If your child is too young to use the demand dose, the nurse will show you how to do it for your child. Your child will also have pain medication that can be given by the nurse as needed for pain. The best way to know if your child is in pain is if your child tells you. Ask your child: to describe the pain, such as if it is sharp, aching, burning, stabbing, or throbbing. to point to where the pain is. what makes the pain better and what makes the pain worse There are other ways to help your child with the pain besides medication. Ask your child s nurse or doctor about deep breathing exercises. Ask your child s nurse about working with a Child Life Specialist (CLS). A CLS can help you make a plan for your child s pain, such as distraction techniques. For more information about pain management, ask your child s doctor or nurse for these handouts: About Pain #472 PCA or Patient Controlled Analgesia #463 (2017) The Emily Center, Phoenix Children s Hospital 17

Now that you ve read this: r Tell your nurse or doctor how you know when your child is in pain. r Tell your nurse or doctor the best ways to comfort your child. r Tell your nurse or doctor the medicines that help your child with pain. r Tell your nurse or doctor other ways to help your child when in pain. 18 (2017) The Emily Center, Phoenix Children s Hospital

7. I can tell you our plan for when our family is feeling stressed How does my child s heart transplant affect me, my child, and my family? The physical recovery of your child after a heart transplant is only part of the recovery. A heart transplant can also be a very emotional and stressful time for you, your child, and the rest of your family. A heart transplant is not a cure. It will change you, your child, and your family s daily routine. It allows seriously-ill children to feel better and take part of normal day-to-day activities. However, children and their families are trading a life-limiting heart disease for a new heart, which means lifelong medicine, close medical follow-up, and sometimes invasive procedures for your child. What might I expect to see in my child emotionally? After surgery, your child might show signs of: depression low self-esteem self-image issues attention disorders. By being aware of the warning signs and knowing that this might happen to your child, you can reduce the impact on your child s life. The transplant team is prepared to support you and your child. They can help with emotional concerns and needs. The transplant team can manage psychologists, psychiatrists, social workers, and child life specialists to help you and your family. What might you see in yourself or other family members? Because this is a life-changing event, it affects all of your family members. Stress affects everyone differently. You might notice that a brother or sister might start acting different. They might be trying to get attention from you with bad behaviors. They might start showing different behaviors, such as crying more frequently, getting into trouble at school, or talking back to you. With your spouse, you might notice that you are fighting more often. Or you might notice that your spouse is very quiet. (2017) The Emily Center, Phoenix Children s Hospital 19

With yourself, you might notice that you get angry easier. Or, it may be hard for you to talk about your feelings. If you notice any of these changes in you or your family members, make sure to talk to a social worker. What might you see in yourself or other family members? The transplant coordinator will give you the name and contact information for the social worker assigned to your child. The social worker will work closely to help support you and your family. You can talk to your social worker about any questions or concerns before and after your child s heart transplant. Your social worker will listen to your concerns and provide you with different ways to help you. They can help with money issues, support groups, and refer you to organizations in your community that can help. The social worker s main job is to make sure you and your family has all the information on how to make the heart transplant work. For more information, ask your child s doctor or nurse for these handouts: Help Us Know Your Child #1019 How to Help Brothers and Sisters of a Sick Child #125 What Does That Mean? Medical Terms You May Hear or See #563 Who s Who on the Hospital Health Care Team #254 You re on the Health Care Team #167 Now that you ve read this: r Tell your nurse or doctor what your family s concerns are. r Tell your nurse or doctor how this diagnosis makes your child feel about himself or herself. r Tell your nurse or doctor how having a heart transplant will impact your entire family. r Tell your nurse or doctor your family s plan for coping with stressful situations. 20 (2017) The Emily Center, Phoenix Children s Hospital

8. I can tell you what rejection is and what the symptoms are What is rejection? Rejection is when the body reacts to something it thinks does not belong there. Your child s immune system works to protect the body from attacks by foreign things, such as germs and cancer cells. These germs can be a bacteria, virus, or fungus. Your child s immune system will try to reject your child s new heart. The body can recognize the heart is different from the rest of your child s body. There are two main types of rejection. Acute cellular rejection (ACR) is caused by the white blood cells in your child s body fighting the cells in your child s new heart. Antibody-mediated rejection (AMR) is caused by proteins called antibodies that recognize your child s heart as foreign. Your child s transplant team will discuss these with you. Your child will need to take medicines called immunosuppressants for the rest of your child s life to help prevent rejection of the heart. Sometimes, rejection may happen anyway. Early diagnosis and treatment of rejection is very important. Even if your child s body starts to reject the new heart, it does not mean your child will lose the heart. When can rejection happen? Rejection can happen at any time. It is most common during the first year after transplant. It can happen if your child misses medications, so it is very important that you make sure your child takes the medicine exactly as the doctor prescribes. Most of the time, rejection can be treated with high doses of steroids and adjusting your child s immunosuppressants. As long as your child takes the immunosuppressant medications as instructed, rejection is less likely to happen. How can the transplant team know that my child is having rejection? Sometimes it can be hard to tell if your child is having rejection. The transplant team will closely monitor your child. They will do certain tests on your child to see if your child is having rejection. The tests that your child will need to do will depend on the (2017) The Emily Center, Phoenix Children s Hospital 21

age of your child and the risk factors for rejection. Different things can affect your child s risk for rejection. The transplant team will talk to you about your child s risks. The risk for rejection can change over time. Some of the tests that your child might have for rejection are blood tests, EKGs, and ECHOs. Your child might also need a heart biopsy. This test is also called an endomyocardial biopsy, or EMB. This test is done in the cardiac catheterization lab (cath lab). The heart biopsy is the most effective test for diagnosing rejection. It can also tell if the rejection treatment is working for your child. A small sample of your child s heart tissue is looked at under a microscope for signs of rejection. If your child has a heart biopsy, your child may need to stay in the hospital overnight or longer. Routine heart biopsies usually start between 1 and 4 weeks after your child s heart transplant. During the first year after transplant, your child will need frequent biopsies to make sure your child s body is not rejecting the new heart. As long as your child does not go into rejection, your child will not need as many biopsies as that first year after transplant. What happens during a heart biopsy? 1. Your child will go to the cath lab for the procedure. 2. The doctor places a tube (catheter) into a large vein in either your child s neck or groin. This tube goes to the right chamber of your child s heart. Through this catheter, the doctor threads a wire with a pincher on the end. The doctor uses the pincher to remove 5 to 8 very small pieces of the heart muscle (heart biopsy). Removing these pieces of the heart muscle usually does not damage your child s heart 3. The doctor removes the catheter after all the biopsies are taken and applies pressure to the area to prevent bleeding. The doctor then places a small bandage over the area. 4. Your child goes to a recovery area for 4-6 hours to recover from this procedure and to make sure the vein site does not bleed. Your child must stay very still during that period of time and will be made comfortable. 5. The biopsies are sent to a laboratory to see if there are any signs of rejection. Your child s doctor will discuss the procedure and possible risks before your child s heart biopsy. You will be asked to sign a consent form for this procedure. Make sure to ask the doctor about any questions or concerns you have. 22 (2017) The Emily Center, Phoenix Children s Hospital

Your child s heart biopsy can show if your child is rejecting the new heart. Rejection can happen if your child s immune system attacks the transplanted heart. There are two types of rejection: Acute Cellular Rejection (ACR) and Antibody-Medicated Rejection (AMR). If your child has ACR, the result of your child s heart biopsy is reported as a number from the heart biopsy grading scale. Heart biopsy grading scale: ACR Grade 0 no rejection: no signs of rejection or cell damage no need to change your child s medication ACR Grade 1R mild rejection (focal): a mild immune system response at least one piece of the biopsy tissues is involved, but not a lot of cell damage usually no need to change your child s medication ACR Grade 2R moderate rejection: a greater immune system response at least one piece of biopsy tissue is involved with more cell damage treatments can include: increasing the dose of your child s immunosuppressant medicine changing your child to a different immunosuppressant medicine giving your child steroids for 3 days (a steroid burst), by mouth or through an IV ACR Grade 3R borderline severe rejection (diffuse): an even greater immune system response inflammation in multiple pieces of the biopsy tissue cells of the heart tissue are damaged swelling, bleeding (hemorrhage), and inflammation of the blood vessels (vasculitis) can be present treatments can include: admitting your child to the hospital giving your child steroids through an IV giving your child other anti-rejection medicines if your child is not responding to the steroids, or if the steroids are making your child worse (2017) The Emily Center, Phoenix Children s Hospital 23

If your child has AMR, the transplant team will talk to you about your child s treatment plan. Treatments for AMR can include: plasmapheresis or apheresis stronger anti-rejection medicines a higher dose of thymoglobulin IVIG What are signs of rejection? Rejection is usually noticed in the results of your child s tests before your child shows any sings. However, it is important for you to know these signs. Rejection is sometimes described as heart failure combined with the flu. Signs of rejection include: irregular heartbeat tachycardia (fast heart rate) or bradycardia (slow heart rate) low blood pressure shortness of breath or difficulty breathing, cough leg swelling fast weight gain feeling very tired upset stomach, vomiting irritable dizziness high/low temperature If you notice any of these symptoms in your child, contact the transplant team as soon as possible. For more information on cardiac catheterization, ask your child s doctor or nurse for the handout, Cardiac Catheterization # 512. 24 (2017) The Emily Center, Phoenix Children s Hospital

Now that you ve read this: r Tell your nurse or doctor what rejection is. r Tell your nurse or doctor the signs of rejection. r Tell your nurse or doctor how your child will be tested for rejection. r Tell your nurse or doctor what you would do if you see any sign of rejection. (2017) The Emily Center, Phoenix Children s Hospital 25

9. I can tell you what is done to prevent rejection The immunosuppressant medicines your child is prescribed after a heart transplant are very important. These medications keep the immune system working at a lower level. This helps your child s body accept the new heart and not reject it. However, it also increases your child s risk for infection. Your child needs to take these medicines every day to help prevent rejection. If your child stops taking these medications, the new heart will fail. You must give your child s medicine exactly as ordered by the heart transplant team. Do not miss any doses. Make sure to take your child to all clinic appointments, follow-up tests, and blood tests that the doctors ordered. Check with the heart transplant team before giving your child any over-the-counter medicines, including herbal or natural medicines. Sometimes these medicines can interfere with immunosuppressant medications. Check with the heart transplant team before giving your child medications prescribed by other doctors. Call the transplant team with any concerns or changes in your child s health. Now that you ve read this: r Tell your nurse or doctor what you can do to help prevent rejection. 26 (2017) The Emily Center, Phoenix Children s Hospital

10. I can tell you what infection is and what the symptoms are Your child is at higher risk for infections. Infections are caused by viruses, bacteria, or fungus. The risk for infection is highest in the first 6 months after transplant, but can happen at any time. Your child will get normal childhood infections such as a runny nose, cough, ear infection, vomiting, and diarrhea. In general, you can take care of these types of infections as you would with any other child who has not had a heart transplant. Some infections are more serious in a child who has had a heart transplant and is taking immunosuppressant medications. Your child s transplant team will teach you about these infections after your child s surgery. The doctors will check your child s blood for these infections a few times a year. What are some common bacterial infections that could affect my child? Common bacterial infections on the skin are usually caused by staphylococcus aureus or methicillin-resistant staphylococcus aureus (MRSA). Common bacterial infections in the gastrointestinal (GI) tract can be caused by vancomycin-resistant enterococcus (VRE), C Diff Colitis (C Diff), or salmonella (which is found in raw eggs and raw chicken). Common bacterial infections in the lungs can be caused by mycobacterium tuberculosis or pseudomonas. What are some common viral infections that could affect my child? Some kinds of viral infections may put children with heart transplants at a higher risk of rejection. If your child has one of these viruses, your child will be monitored very closely by transplant team. Treatment for these viruses usually depends on the severity of the symptoms. Your child may need anti-infectant medications over a specific time. Varicella (chickenpox) used to be more common, with people getting it when they were children. A vaccine has made chickenpox much less common in many countries, including the United States and Canada. (2017) The Emily Center, Phoenix Children s Hospital 27

Children who have had a heart transplant are at risk for getting chickenpox if they have not had it before or if they have not had the vaccine. A blood test is done before a child has a heart transplant to see if the child is protected against chickenpox. If your child is not protected from chickenpox through a previous infection or vaccine, you need to make sure the people who come into contact with your child tell if you if they have been exposed to chickenpox. You will also need to avoid contact with people who have shingles. This is a painful rash that is also caused by the varicella virus. It can cause chickenpox in a child. Let the transplant team know if your child has been exposed to chickenpox or shingles. They can arrange for your child to get varicella antibodies to help prevent getting chickenpox. This medicine needs to be given within 4 days of exposure. Even if your child gets this medicine, your child may still get the virus. Chickenpox can show up between 10 and 21 days after someone comes in contact with the disease. Herpes simplex virus (HSV) types 1 and 2 are a family of viruses that cause blisters and sores in different parts of the body. HSV type 1 (HSV-1) usually causes cold sores in the mouth or on or around the lips. It can be passed from one person to another through saliva or sores on the skin of an infected person. HSV type 2 (HSV-2) usually causes genital sores. It can be passed during sexual contact with an infected person. Children who have had a heart transplant can get either type of HSV, but cold sores from HSV-1 are more common. The sores can be painful and filled with pus. It can also cause symptoms such as fatigue, fever, or body aches. The treatment for HSV is to relieve the symptoms. There is no cure for HSV. If children have a lot of pain from HSV and it affects their eating and drinking, they might have to be admitted to the hospital. Cytomegalovirus (CMV) is a common virus that between 50 and 90 percent of adults have been infected by it. Usually, CMV does not cause any symptoms in healthy people. It can stay in the body for a very long time after the first infection. 28 (2017) The Emily Center, Phoenix Children s Hospital

The risk of your child getting CMV is highest in the first 3 months after transplant. It can affect the eyes, lungs, stomach, and esophagus. The treatment for CMV is either an IV medicine called ganciclovir (or Cytovene) or a medicine given by mouth, called valcyte (Valganciclovir). Epstein-Barr virus (EBV) can cause a disease known as post-transplant lymphoproliferative disorder (PTLD). Symptoms may start with feeling tired, weight loss, and fever. Another sign is swollen lymph nodes. EBV can also infect the intestines, causing belly pain, changes in bowels, or bloody stools. To be sure it is PTLD, a child with the symptoms may also have a: CT scan to look at swollen lymph node or a mass. Biopsy of the swollen node or mass Endoscopy - an exam of the digestive tract through a flexible tube and camera Bone marrow aspiration Your child may need to be admitted into the hospital to treat EBV. Your child might need and IV and be given medicine called ganciclovir (or Cytovene). Your child s doses of immunosuppressive medicines might be lowered. Your child s transplant team will follow your child closely while in the hospital. What are some common fungal infections that could affect my child? Fungal infections happen less often because we give the medicine fluconazole to prevent them after transplant. PCP or pneumocystis carinii penumonia is a yeast-like fungal infection. Since immunosuppressive medicines can put children at greater risk for PCP, they are given an antibiotic (usually Batrim or Sulfamethoxazole/trimethoprim) that helps to prevent it. Candida is yeast that can cause infections. When it infects the mouth or throat it is called thrush. Thrush causes white, raw areas, tenderness or pain in the mouth or throat, a white film on the tongue, and trouble swallowing. Candida can also infect the tube that goes from the throat to the stomach (the esophagus). It is treated with medicine by mouth or IV. (2017) The Emily Center, Phoenix Children s Hospital 29

What are signs of infection? Infections can be caused by viruses, bacteria, or fungus. The signs and symptoms of infection include: Fever greater than 101.4 F or 38 C Chills Irritability Tired or fatigued Loss of appetite Sick to the stomach or throwing up Loose stools Stomach pain Cough Sore throat Stuffy or runny nose Shortness of breath Dizziness or light-headedness The transplant incision is swollen, tender, open, or draining Headache Painful urination For more information on handwashing, ask your child s doctor or nurse for the handout, Good Handwashing #100. Now that you ve read this: r Tell your nurse or doctor what an infection is. r Tell your nurse or doctor the signs your child has an infection and what to do if you see any. 30 (2017) The Emily Center, Phoenix Children s Hospital

11. I can tell you what is done to prevent infection What can I do to help prevent infections? It is important to try and avoid infections when possible. There are several things you and your family can do to try to reduce the risk of infections. One of the best things you can do to prevent infection is to wash your hands well and often. This keeps germs on your hands from infecting you and others. It should be done for 15-30 seconds with soap and water or use hand sanitizer. Handwashing should be done often, especially after using the toilet, after changing a diaper, before and after cooking or preparing food, snacks, or bottles, before eating meals and snacks, and after petting animals. For the first 6 weeks after transplant, your child should stay away from crowded places, such as malls, movie theaters, and classrooms. Your child should wear a face mask when in public for the first 3 months after transplant. Your child needs to stay away from people who are sick. Ask family and friends to stay away when they have fevers, sore throats, coughs, or aches. Make sure family members are covering their mouths when coughing or sneezing and then washing their hands right away. Do not let your child share dishes, cups, glasses, silverware, or toothbrushes with other people or family members. Your child should not clean cat litter boxes, bird cages, or fish tanks. If contact with a pet must happen, make sure your child wears gloves and a mask. Dietary precautions need to be followed to reduce the risk of infection from food: Your child should not eat raw or partially cooked meat or seafood. Wash fruits and vegetables thoroughly. Do not let your child eat unpasteurized milk or some fresh, soft cheeses such as brie or blue cheese. Make sure to avoid cross-contamination between raw and cooked foods. Drinking water should be filtered, bottled or boiled for 10 minutes. (2017) The Emily Center, Phoenix Children s Hospital 31

Brush and floss your child s teeth two times each day. Your child needs to see the dentist regularly. Make sure the dentist knows your child had a heart transplant and is on immunosuppressants. Call your transplant team before any dental visits. Your child needs to wear gloves when playing in the dirt or gardening. Your child needs to wear a mask if using potting soil. Your child needs to avoid water that is not clean, such as lakes or ponds. Make sure pools and hot tubs are clean before your child goes in them. Immunizations help to prevent infections. Three months after your child s transplant, your child may be able to have a flu shot. Your child will then need to get a flu shot once every year. For six months after transplant, your child should not have live or non-live immunizations. Live vaccines including MMR, Varicella, and Nasal Flumist can cause serious infections in a child after transplant. Six months after your child s transplant, your child can have non-live vaccines. What if my child is exposed to chicken pox, measles, or mumps? If your child has close contact with someone with chicken pox, measles, or mumps, call the transplant team right away. For more information, ask your child s doctor or nurse for these handouts: Good Handwashing #100 How to Avoid Infections if You are At Risk #61 Ways to Prevent Infection After Surgery #1088 Now that you ve read this: r Tell your nurse or doctor what you can do to prevent an infection. r Tell your nurse or doctor the medications that will be given to prevent infections. r Tell your nurse or doctor what to do if my child is exposed to chicken pox, measles, or mumps. 32 (2017) The Emily Center, Phoenix Children s Hospital

12. I can tell you why handwashing is important One of the best things you can do to prevent infection is to wash your hands well and often. This keeps germs on your hands from infecting you and others. Most people catch colds by rubbing their nose or eyes when there are germs on their hands. You should wash your hands: before and after cooking, or preparing food, snacks, or bottles before eating meals and snacks after using the toilet or helping a child use the toilet after diapering a child after you touch things that have body fluids or wastes on them (like blood, urine, stool, saliva, or fluids that come from the nose, eyes, or sores) before and after giving medicine, changing bandages, or doing another medical procedure after playing with animals after cleaning up after animals after caring for a sick child or animal after coughing, sneezing, or wiping your nose whenever your hands are dirty Teach your child how to wash his or her hands. Remind young children to wash their hands. Check your child s hands before meals to make sure they have been washed well. For more information on handwashing, ask your child s doctor or nurse for the handout, Good Handwashing #100. (2017) The Emily Center, Phoenix Children s Hospital 33