Liver Transplant. Family Handbook PEDIATRIC LIVER CARE CENTER Weekends, Nights & Holidays Monday Friday, 8 am 4:30 pm

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1 PEDIATRIC LIVER CARE CENTER Liver Transplant Family Handbook Call us at Monday Friday, 8 am 4:30 pm Weekends, Nights & Holidays (Ask for the liver fellow on call to be paged.)

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4 Call us at Monday Friday, 8 am 4:30 pm Weekends, Nights & Holidays (Ask for the liver fellow on call to be paged.) Pediatric Liver Care Center Cincinnati Children s 3333 Burnet Avenue Cincinnati, OH KN /2017 BRV

5 Table of Contents Welcome... 1 Transplant Evaluation Evaluation Overview Steps of Liver Transplant Evaluation... 5 Transplant Team Members Call with Questions Care Before Transplant Listing Requirements Waiting List How Does Your Child get a New Liver? Pre-Transplant Management Nutrition Before Transplant Education After Transplant Important Things to Learn After Transplant Medicines After Transplant Medication Tips Preventing Rejection Preventing or Treating Infection Controlling Blood Pressure Correcting Electrolyte Levels Correcting Fluid Imbalances Other Medicines Index of Medicines Taking a Blood Pressure Blood Pressure Record When to Call the Transplant Team Getting Back to Life at Home Care at Transplant Organ Matching and Acceptance Anatomy of the Liver The Liver Within the Digestive System Problems to Watch for Right After Transplant Pain After Transplant Recovery After Transplant Transfer to the Hospital s Transplant Unit Other Risks After Transplant Use Extra Caution Nutrition After Transplant When to See the Doctor Again Things to Think About for Patients 18 & Over Common Topics to Review How Can Families Help Self-Management Resources Glossary Web Resources

6 Welcome to the Pediatric Liver Care Center

7 Hello! Hello, and welcome to the Liver Transplant Program at Cincinnati Children s. This handbook will help explain the transplant process. 1. Our goal is to help you know what to expect and how to prepare for transplant. 2. Please read this handbook before your child s transplant evaluation. 3. Bring the handbook with you to appointments. 4. If your child is old enough to read and understand this handbook, please share it. You will be getting a lot of information. The handbook should help you to remember the things that we discuss. If you need help with any part of this handbook or there are things you don t find written down, please be sure to ask us for help. We believe the best results happen for children when families, patients and the healthcare team work together. We welcome your input, questions and concerns. We welcome and encourage you to be involved in your child s care. Our goal is to provide you, your child and family with the best information possible as we move forward together through this transplant journey. Thank you for allowing us to be part of your child s care. Sincerely, The Liver Transplant Team Mission Statement and Promises The mission of our Liver Transplant Program is to help your child live the best life possible. As a healthcare team, we make these promises to you and your child. We promise to: Provide safe care Use the best evidence available to treat your child Use care standards and protocols Share information with you Work as a team and involve you and your child in his or her care Deliver care as quickly as possible Treat all families and patients equally, regardless of social, economic, or cultural differences Give the right medicine in the right doses for the right reasons at the right time for the right patient 1

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9 Transplant Evaluation

10 Evaluation Overview The liver is the largest solid organ in the body. The liver performs more than 500 jobs for our bodies. The liver helps to: Make bile to help digest food Filter bacteria from the blood Store carbohydrates, vitamins and minerals Make proteins Make glucose for energy Make the factors we need to control bleeding Break down certain drugs Sometimes children have a liver disease that causes the liver not to work like it should. Our team helps care for children with a wide range of liver diseases. Some liver diseases can be treated with medicine and close follow-up with the liver doctor. Other liver diseases require surgery. Some children need a liver transplant, which can be a lifechanging event for your whole family. You want the best, most experienced transplant team on your side. From 1986 to 2012, our team has helped more than 530 children who needed liver transplants. Before deciding next steps, we ask that you and your family meet for a Pre-Liver Transplant Evaluation. During the evaluation, you might have some down time between appointments. Feel free to bring things from home to help pass this time. We have movies, cards and coloring supplies in clinic, but we do not have toys. You will receive a lot of important information during the evaluation visit. Please find friends or family to take care of other young children you may have at home during your visit so you can focus on the information presented. 4

11 Steps of the Liver Transplant Evaluation Step 1 SETTING UP THE EVALUATION Step 2 DURING THE EVALUATION The liver transplant office will set up an evaluation visit for your child and family with the Transplant Team. Usually, you will receive the final schedule for the evaluation three to four weeks after your doctor sends our team a referral about your child. In emergency cases, the office can schedule the evaluation within a few days. Your evaluation visit will take place over two days. In most cases, your child will not need to be admitted to the hospital for the visit. During the evaluation, we hope to reach several goals: Get to know you and your child Talk about what you expect You get to know our team Confirm your child s cause of liver disease and how severe the disease is Share our thoughts about your child s care before and after transplant Decide if transplant is the best option Define how urgent it is for your child to get a liver transplant We will also want to make sure that you, your child and family know the: Details of your child s illness Risks, benefits and outcomes of liver transplant Parts of the transplant surgery The team will review your child s history and records before the meeting. Your child may need: Blood tests Special testing done in our X-ray area to learn your child s blood vessel system and what the liver looks like (MRI, CT scan, ultrasound) Echocardiogram Kidney function testing called Glomerular Filtration Rate (GFR) Liver biopsy Hearing test 5

12 Step 3 AFTER THE EVALUATION Step 4 THE TRANSPLANT TEAM RECOMMENDATIONS The final decision about liver transplant will not happen until after test results have been reviewed. There is a formal meeting with all of the members of the transplant team. The team will answer these questions: 1. What caused your child s liver disease? 2. How severe is the disease? 3. Will a transplant help your child survive, compared to no transplant, at three months from now? At 12 months from now? 4. Will transplant improve your child s quality of life in 12 months? 5. Are there any medical issues that could prevent a successful transplant? The Transplant nurse will contact you after the team has made the decision about transplant. You will also get a letter about this decision. You will be able to talk to the nurse and ask questions. There are four possible recommendations: Approved: Your child is a candidate for liver transplant and we can go ahead with the listing process. Deferred: Your child is not a candidate for transplant at this time. Our team will continue to work with your primary GI doctor to discuss your child s care plan. Decision Pending: Your child needs further testing/ evaluation. Not a Candidate: Your child is not a candidate for liver transplant. 6. Are there any changes to your child s current care that could prevent the transplant? 7. Does your family have enough psychosocial support to make it through the transplant process? Do you have the resources to meet your child s physical, economic, educational, health and social needs? 6 PEDIATRIC LIVER CARE CENTER

13 Transplant Team Members These are the team members you will meet: Administrative Supervisor/Administrative Assistant They are a phone call away to: Schedule appointments Get lab results Help with paperwork and resources Advanced Practice Nurses (APN/Nurse Practitioner) APNs are registered nurses who have completed graduate school and are certified to provide diagnostic, therapeutic and preventive health care services. Our APNs specialize in liver transplant care. Chaplains Chaplains are available 24 hours a day for providing spiritual support you and your child. Child Life Specialists Child Life specialists help your child cope with the challenges of hospitalization through play. They can help your child: Reduce stress and fear Participate in care decisions Enjoy play activities Stay involved in school through our hospital s school Dietitians Dietitians will track your child s nutrition throughout the transplant process and teach your family about growth and nutrition and how you can stay on track at home. GI Doctor (Hepatologist, or Liver Doctor ) Your primary GI doctor will make sure that your child s liver is working at its best, both before and after the transplant. You may also meet other GI doctors who will be part of the team and help manage your child s care. Gastroenterology (GI) Fellows GI fellows are pediatricians who are training to specialize in gastrointestinal and liver diseases. They will work with the transplant doctor and often help with your child s day-to-day medical care in the hospital. They may also be present during your child s tests and clinic visits. Gastroenterology (GI) Nurse The GI nurse will be your main contact before your child s transplant. The nurse will be able to: Help keep your child as healthy as possible before transplant Be a resource for your questions and your child s care needs Work with you, your referring doctor, GI liver doctor and the Transplant Team to help coordinate your child s healthcare needs before transplant Intensive Care Team The intensive care team will help to care for your child in the Intensive Care Unit (ICU) after the transplant. Pediatric Psychologists The pediatric psychologists will help your family deal with the stress of acute and chronic illness. They can help with mental health needs and treatment for you and your child. 7

14 Resident Doctors Resident doctors are in training to specialize in children s care. They will work with the GI doctor and fellows to care for your child. Transplant Pharmacists The pharmacist reviews and prepares the doctor orders and can answer questions about the medicines even after you leave the hospital. Research Coordinators The research coordinators are involved in the research studies at Cincinnati Children s. They may talk to you about taking part in one of these studies. Social Workers The social workers provide support to: Transplant Surgeon This surgeon will perform the transplant and any other needed surgery. The surgeon will also help with your child s care after the transplant and will stay involved in your child s care for as long as your child is a patient at Cincinnati Children s. Help with obstacles to care before the transplant Provide emotional support for your family Help you get the resources you need before and after your hospital stay Transplant Infectious Disease (ID) The transplant infectious disease team will help identify your child s risk for infection and work to decrease the risk. Transplant Financial Specialists Next to the health of your child, the cost of treatment may be one of your biggest concerns. The financial specialists will help with financial issues and will work closely with your insurance company and help to explain the benefits of your plan. There are times when families and children may not have insurance or may be under-insured. The transplant financial specialists can help people connect with Family Financial Advocates. These advocates can help families: Apply for insurance programs Find other financial resources you might qualify for Transplant Nurse The transplant nurse will be your main contact person after your child s transplant. This nurse will help: Manage your child s transplant listing status through the United Network for Organ Sharing (UNOS) Teach you and your family about the transplant Plan your child s return home Research at Our Hospital Our hospital is doing breakthrough research every day to improve the care of children. The Liver Transplant Team is involved in this research and may ask you and your family if you would be interested in taking part in a research study. Our team will take the time to talk with you about the research studies and answer any questions that you might have. You with other transplant-related needs 8 PEDIATRIC LIVER CARE CENTER

15 Call with Questions Our transplant team is large. We know how important it is for you to be able to connect with our team. To make this easier, there are a few members of the Care Team who will be your main contacts. Your Child s Care Team Liver Doctor: Surgeon: GI Nurse: Liver Transplant Nurse: HOW CAN I CONTACT MY CHILD S CARE TEAM? Here are some important phone numbers for you to keep with you. To reach the GI Nurse: or ext Monday Friday, 8:30 am 4:30 pm To reach the Transplant Nurse: or ext Monday Friday, 8:00 am 4:30 pm After office hours and on weekends, please call: or Ask to speak with the Liver Doctor on-call PLEASE DO NOT LEAVE URGENT MESSAGES ON VOIC If you call us and you need to speak to someone right away, we ask that you call the phone numbers listed above and ask for immediate help. Your child s nurse or doctor can be paged by our office staff. Please register for MyChart at your next doctor visit. This is a great way to share non-urgent information with your care team. 9

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17 Care Before Transplant

18 Listing Requirements When the team recommends a transplant, your child will be placed on the national waiting list as soon as possible. There are three steps to this process. Step 1: APPROVAL BY THE OHIO SOLID ORGAN TRANSPLANTATION CONSORTIUM The Ohio Solid Organ Transplantation Consortium (OSOTC) is made up of all the hospitals in Ohio that perform liver transplants. Their main goal is to make sure that your child receives equal access to organs. Once the consortium reviews your child s information, they will let us know if there are any questions or concerns about listing your child for transplant. Your child must have approval from the consortium before being listed for liver transplant. Step 3: CONFIRMED TRAVEL ARRANGEMENTS We cannot predict when your child will get an offer for transplant. You and your child must be prepared at any time to make the trip to Cincinnati for transplant. We require you have travel plans made in advance. If you live more than a 6-hour drive from our hospital, you will need to make arrangements with a private flight company. Commercial flights are not an option. The social worker and transplant financial specialist will help you make these travel arrangements. Step 2: FINANCIAL APPROVAL Your insurance company needs to approve your child for transplant. This can take up to 3 weeks. The transplant financial specialist will work with your insurance company during this time. Learn More about the Consortium For more information about the Consortium, visit: 12

19 Waiting List REQUIRED LISTING INFORMATION The next step in the listing process is getting information to The United Network of Organ Sharing (UNOS). That includes: Lab data Clinical data Height/weight Demographics Blood type Donor-specific criteria Social Security Number The liver transplant nurse can answer any questions and tell you when this process is complete. MELD Patients Age 12 & Over Labs used to calculate score: Bilirubin INR Creatinine PELD Patients Under 12 Years Labs used to calculate score: Bilirubin INR Albumin Failure to grow Age when listed YOUR CHILD S SCORE ON THE WAITING LIST Score ranges from Score is not clearly defined. Your child will be listed with one of the following types of status: MELD End-Stage Liver Disease PELD Pediatric End-Stage Liver Disease Status 1A or 1B (Patients with this status have a higher priority than the MELD/PELD score) WHAT DOES THIS SCORE MEAN? STATUS 1A Patients with Acute Liver Failure STATUS 1B Patients with Chronic Liver Disease who have a MELD/PELD score > 25 While every person on the liver transplant waiting list needs a liver, the time frame in which each person needs to be transplanted is different. A higher score means a greater risk of death without transplant. Although a higher score indicates greater urgency, the time from listing to transplant cannot be predicted. We will watch your child closely while they wait for transplant. Patients much meet one of the following criteria: Acute liver failure Primary non-function of a transplanted liver within 7 days Hepatic artery clot in a transplanted liver within 7 days Acute decompensated Wilson s disease Patients must meet one of the following criteria: On a ventilator GI bleeding requiring significant blood transfusions Kidney failure requiring dialysis Tumor on liver without evidence of spreading of disease Glascow coma scale < 10 within 48 hours of listing 13

20 EXCEPTION POINTS Certain cases qualify for a defined number of total MELD/PELD points. These are called Exception points. Patients with the following diagnosis may qualify for exception points: Hepatopulmonary Syndrome Portopulmonary Syndrome Hepatocellular Carcinoma Urea Cycle Defect or organic acidemia Cholangiocarcinoma Cystic Fibrosis Familial Amyloid Polyneuropathy (FAP) Primary Hyperoxaluria EXCEPTIONAL CASES In some cases, the liver transplant team may feel that the patient s degree of liver disease is not reflected by the MELD/PELD score given. In these situations, the team may decide to appeal for more points based on a special case. These points: Must be approved by The Regional Review Board Are renewed every 3 months and are not guaranteed Are not transferable to another center s waiting list 14 PEDIATRIC LIVER CARE CENTER

21 How Does Your Child Get a New Liver? During the transplant, the surgeon removes the diseased liver and replaces it with a new one. Where does this new liver come from? The new liver can come from deceased donors or living related donors. DECEASED DONORS Deceased donors are the most common source for liver transplants. These donors are people who have passed away because of permanent brain injury. UNOS decides who receives an organ from deceased donors based on the MELD/PELD scoring system. The identity of the donor is kept secret to protect the donor s privacy. The timing of receiving a liver from a deceased donor cannot be predicted. When a liver becomes available, the decision to transplant is based on the best possible outcome for your child. The Transplant Team will decide if it is a good match for your child. LIVING RELATED DONOR Living related donor (LRD) transplants are an option for some patients and families. This is when a living adult donates a portion of their liver. These transplants are elective, so the surgery is scheduled in advance. However, the procedure can present risks for the donating adult. You can discuss the details with your surgeon. Problems that would prevent living related donation are: HIV positive blood test Fatal illness Cancer (current or past) Active infection Liver Disease Psychosocial risk factors Family history of serious noted upon assessment reaction to anesthesia The donation surgery for the adult donor takes place at Cincinnati Children s. The donor will stay in the hospital for 5 to 7 days after surgery, depending on his or her recovery. The donor will have activity restrictions for up to 6 weeks after the surgery. If you are interested in living related donor, please call to speak with our living related donor coordinator. A team will evaluate every potential adult donor and ensure that the potential donor s needs are protected and met. This will be done with the help of an independent donor advocate and the University of Cincinnati Liver Program. For more information, please call: Anyone interested in living related donation must be healthy and meet the following requirements. Blood Type match between patient and donor No current infection Normal Blood tests Normal medical history Normal physical exam Normal X-rays Normal EKG Normal size and blood vessel anatomy UNOS requires us to keep the identities of donors and recipients private. If you would like to contact the donor s family, ask your transplant care manager about the process. 15

22 Pre-Transplant Management You may have questions and concerns before transplant. Here are some resources to help. Medical Questions To ask about medical issues before transplant, please call your GI nursing team at: Liver Transplant Questions If you have questions about the transplant, call your liver transplant nurse at: Personal information changes If your address phone number or insurance changes, please contact the liver transplant office to update your information. Travel Plans If you will be traveling while your child is on the transplant waiting list, please let us know how to reach you. Remember, you must be within a 6-hour driving time of Cincinnati Children s. Discuss travel plans outside of this distance with the transplant team. Pre-Transplant Clinic We would like to see your child at Cincinnati Children s about once a month before transplant. These appointments can last up to 3 hours. Come prepared with books, snacks and quiet activities to keep your child comfortable. Please bring this liver transplant handbook with you to each clinic visit so that your transplant nurse can review the posttransplant information with you. During this visit you may also meet with: GI doctor Transplant surgeon Dietitian Research nurse Social worker Child psychologist Anesthesia consult (1 time only) NOTIFY US CHANGES IN YOUR CONTACT INFORMATION Please let us know immediately if your contact information changes. 16 PEDIATRIC LIVER CARE CENTER

23 Health Changes You are the most important member of your child s health care team. The transplant team needs to know if your child is sick or in the hospital. Please remember to call your GI nurse with any updates. When the condition of a child on the waiting list declines, your care team may recommend that you stay in Cincinnati until transplant. Lab Work Your child will need blood work on a regular basis to keep the PELD/MELD score up to date and to monitor clinical status. We will tell you when the labs are due. Primary Care It is important that your child have a local primary care physician and/or pediatric GI doctor close to your home. We will communicate with your local doctors throughout the transplant process. Vaccinations Your child s vaccine records will be reviewed. This will help us ensure that your child has all the vaccines they need before transplant. Please check with your doctor or nurse before your child gets any vaccines. Live Vaccines Your Child Should NOT Get Live Vaccines Your Family Members Should NOT Get MMR (measles, mumps, rubella) Chickenpox (Varicella) Flu Mist Flu Mist ALWAYS HAVE YOUR PHONE Always have your cell phone powered on and with you. When an organ becomes available the team will need to get in touch with you as soon as possible. 17

24 Nutrition Before Transplant Good nutrition can help your child s body deal with the transplant and recover more quickly. It is important that you understand and help your child with their nutritional goals. During the pre-transplant evaluation, a dietitian will check your child s growth and development. The dietitian might measure your child s height, weight, head circumference, arm size and/ or skin fold thickness. The dietitian might ask you to write down what your child eats over several days. The dietitian also will help with a nutritional care plan for your child. Some children with liver disease: Need more vitamins and minerals Require more calories than usual to help them grow Might need to limit protein or salt intake Need tube feedings to help them gain weight and grow We will work closely with you and the dietitian to meet your child s nutritional needs. 18 PEDIATRIC LIVER CARE CENTER

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27 Care at Transplant

28 Organ Matching and Acceptance When a liver becomes available, a liver transplant nurse will call or page you. This nurse will ask if your child has had any recent fevers or infections. If your child is ill, we may need to postpone the transplant. If your child is well, you will need to come to the hospital as soon as possible. If you are more than a 6-hour drive from Cincinnati, you will need to take a flight that we will help you arrange in advance. Once we ask you to come to the hospital, your child should not eat or drink anything before the transplant. Preparation for the transplant will start as soon as your child arrives at the hospital. Your child will have: A check-up by the liver doctor to make sure your child does not have an infection or problems with other vital organs like the heart or lungs A chest X-ray Blood and urine tests Medicines to protect against infections You and your child may wait multiple hours before the transplant surgery begins. If the liver is a good fit, the surgeons will prepare it for your child. This usually involves setting up the blood vessels for reconstruction and removing the donor s gallbladder. The surgeons may also need to split the liver to the right size. This process can take a few hours. The Transplant Team will examine the liver to make sure it is a good fit for your child. It is important to remember that sometimes the donor liver is not able to be used. Although disappointing, the team makes this decision with your child s best interest in mind. When the liver is ready, you and your child will go to the holding area to wait. The anesthesiologist (the person who puts your child to sleep for surgery) will talk with you. During the procedure, your family will wait in the surgery waiting area. We will reserve a private room for you if one is available. A member of the transplant team will give you updates several times throughout the liver transplant surgery. 22 PEDIATRIC LIVER CARE CENTER

29 Transplanting a liver is a long, complex surgery. It is the most challenging operation in the abdomen. The transplant can take anywhere from 4 to 12 hours. There are five basic steps to the procedure: Step 1 When the liver is ready, the patient comes to the operating room and is put to sleep. The Transplant Team will place IVs and special tubes at different places in your child s body to monitor throughout the procedure. Step 2 The surgeon opens the abdomen and removes your child s liver. This step takes time because many patients have scar tissue and fragile blood vessels. Your child may need blood products during this step. Step 3 Step 4 The surgeon will connect the bile duct in the new liver to your child s bile duct. If your child does not have a bile duct, your surgeon may connect the new bile duct to a segment of your child s bowel to drain bile into the intestines. Step 5 The last step is closing the abdomen. Your transplant surgeons may choose to close the skin incision but not the muscle layers. They will not close the muscle layers if they think that the pressure might interrupt the blood flow. In that case, the surgeon will close the muscle layers in a different operation about a week after the transplant. When the transplant is complete, your child will go to the Pediatric Intensive Care Unit (PICU). The transplant team will come to talk to your family in the waiting area. After the surgery, The PICU staff will let you know when your child is ready for visitors. This can take at least 60 minutes. The surgeon will connect your child s blood vessels to the new liver. After the blood vessels are connected, blood will be able to flow through the new liver. 23

30 Anatomy of the Liver INFERIOR VENA CAVA AORTA PORTAL VEIN COMMON BILE DUCT 24 PEDIATRIC LIVER CARE CENTER

31 The Liver Within the Digestive System STOMACH RIGHT LOBE OF LIVER LEFT LOBE OF LIVER GALLBLADDER COLON SMALL INTESTINE 25

32 Problems to Watch for Right After Transplant These are some of the complications that can happen after transplant. Your child s team will watch closely for these problems and work to prevent them whenever possible. Primary Non-Function Primary non-function is when the new liver does not wake up after being transplanted. If this happens, your child will need a new transplant as soon as possible. This is a rare but very serious complication. Vascular Thrombosis Thrombosis is when a blood clot forms in one of the two major blood vessels that lead to the liver. Hepatic Artery Thrombosis (HAT) occurs in the hepatic artery and is problematic because it may also affect the bile duct. Portal Vein Thrombosis (PVT) occurs in the portal vein. It is less common and usually less threatening. Infection Your child s rejection medicines help the new liver, but they make it harder for the body to fight infection. Your child will need additional medicines to prevent infection. You can also help prevent infections by washing your hands every time you enter and leave your child s hospital room and making sure that other visitors and healthcare workers do the same. The best ways to prevent infections are to: Wash your hands, and wash your child s hands Avoid people who are sick Ask friends and family not to come visit if they are sick Your child will have an ultrasound every day for the first five days after the transplant to check the liver s blood flow. If the ultrasound shows a problem, your child may need a surgery to check for a clot. If a clot is found quickly, it can usually be removed without affecting the new liver. If the clot cannot be removed, your child may need to be re-transplanted. Bleeding Bleeding is the most common complication after the transplant. Your child may have dropping blood counts or drainage from the abdomen. If the bleeding persists, your child may need a surgery to control the bleeding. Rejection Your child s body will recognize that the new liver is not its own and naturally want to get rid of, or reject it. More than half of all liver transplant patients experience some form of rejection. Medicines can help prevent and treat rejection. However, in rare cases when the rejection is not controlled, your child may need to be re-transplanted. 26 PEDIATRIC LIVER CARE CENTER

33 Lung Problems The sleep medicine used during surgery and the long period of bed rest afterward can cause small areas of the lungs to collapse, called atelectasis. If your child is old enough to follow instructions and is breathing on his or her own, we will ask your child to take deep breaths and cough. This helps move air deep into the lungs and helps prevent pneumonia. Making sure your child s pain is under control will help make is easier for your child to cough and deep breath. Kidney Problems Some children have kidney problems after surgery. These conditions are usually reversible. In rare cases, some patients need to use an artificial kidney machine, called dialysis, until their kidneys start working better again. Biliary Problems Cells within the liver produce liquid called bile. Bile helps to digest fat. Bile also carries waste products from the liver to the intestines to exit out of the body. There is a network of channels and ducts in the liver to carry the bile. This network is called the biliary system. When bile does not drain out of the liver the way it should, the build-up of bile can cause damage and scarring in the liver. After transplant, the bile duct system that the surgeon connects to the child s new liver may not heal well and might leak bile, become blocked or infected. The type of treatment will depend on the type of bile duct problem. Signs that there might be a problem with the bile duct after transplant include: Abnormal test results: high liver enzymes, high bilirubin levels, or found on ultrasound. Sometimes the problem is found on ultrasound or blood testing before any other signs of this problem are seen Jaundice Fever High Blood Pressure and High Blood Sugar Because of side effects of medicines after transplant, we will watch your child for signs of high blood pressure and high blood sugar. Often, other medicines are used to treat these problems. 27

34 Pain after Transplant Your child will have pain after transplant surgery. Types of pain might include: Belly pain Pain at the incision Back pain Muscle aches Every person handles pain differently. Your care team will help your child be as comfortable as possible. Your child will get pain medicines, but we also know that children also benefit from other comfort measures like: Quiet play activities Comfort items like blankets and stuffed animals Having family with them Getting rest It is important that you and your child let us know if you think that the pain after transplant is not under control. 28 PEDIATRIC LIVER CARE CENTER

35 Recovery after Transplant After the transplant, your child will recover in the Pediatric Intensive Care Unit (PICU). The PICU staff will use special equipment to keep track of your child s health. This equipment may include: IVs A breathing tube in the A tube in the nose mouth Drain tubes in the abdomen A urine catheter for blood and fluids Your child will have a dressing covering the incision from the transplant. For the first week after the transplant, your child s body may look puffy. This is from the extra fluids needed during the surgery. The puffiness usually goes away within five to seven days. PICU VISITATION POLICY The PICU team has made a great booklet about what to expect while staying in the PICU. We will get you a copy of this book to review after your child is listed for transplant. During the time in the PICU, your child may have dressings, tubes and lines that look like this: Endotracheal Tube Nasogastric Tube Incisional Bandage Blood Pressure Cuff Triple Lumen Catheter (Control Line) Arterial Line Heart Monitors Pulse Oximeter IV Jackson-Pratt Drain Foley Catheter 29

36 Transfer to the Hospital s Transplant Unit When your child is stable, he or she will move to the transplant unit. The nurses on this unit specialize in caring for children after liver transplants. The medical team will make rounds each day to examine your child, discuss changes and answer questions. The recovery process varies for each patient. About one to two weeks after the surgery, your child s medical equipment may be similar to what you see below: Nasogastric Tube for Feeding (possible) Broviac Catheter (possible) PICC Line (possible) Incision Pulse Oximeter 30 PEDIATRIC LIVER CARE CENTER

37 Other Risks After Transplant REJECTION In addition to changes in blood test results, some patients may have these signs of rejection: It is normal for the body to attack and try to destroy any foreign things that enter it. The body sees your child s new liver as foreign and tries to attack it. This is known as rejection. Fever greater than 101 degrees F (38.3 degrees C) A feeling of being very tired Yellow eyes or skin Itching Pain over the liver Some of the medicines that your child gets after surgery will help to reduce the chance of rejection. Even with these medicines, called anti-rejection or immunosuppressants, many patients have at least one episode of rejection. Rejection can happen at any time, but is most common during the first six months following transplant. Many patients do not have any symptoms of rejection. Often, we might only find changes in blood tests telling us to check for rejection. It is very important to get blood tests done on time so that we can watch lab results closely. Call your liver transplant nurse if you notice any of these symptoms. A liver biopsy is needed to confirm rejection. Rejection may range from mild to severe. If there is rejection, your child s medicines may be changed and your child will need to stay in the hospital for at least five days for treatment. A repeat biopsy may be needed to make sure that the rejection is getting better. The most important thing your child can do to try to prevent rejection is to take their anti-rejection medicines as directed. Missed doses, wrong dose, or taking medicine at the wrong time can lead to changes in the medicine level in the blood. Studies have shown higher rates of rejection happen in patients whose medicine levels in the blood change often. TYPES OF REJECTION ACUTE REJECTION CHRONIC REJECTION Onset first week to years after transplant Often responds well to treatment Happens in at least 45% of patients Highest risk is in the first 3 months after transplant Late acute rejection is usually related to not taking anti-rejection medicines as prescribed. Onset weeks to years after transplant Early chronic rejection can respond to medical therapy Happens in less than 5% of patients Can lead to re-transplant 31

38 INFECTION Your child s immune system will be weaker after transplant because of medicines used to prevent rejection. This will increase your child s risk of getting an infection. Below are some common infections your transplant team will help you watch for. Varicella (VZV) Varicella is the virus that causes both chickenpox and shingles. Chickenpox has become less common since the vaccine was introduced in the United States. However, chickenpox may cause severe infections in children after transplantation. Your child will have a blood test prior to transplant to see if they have evidence of protection (antibodies) against VZV. If your child is NOT immune to VZV, it is very important that you contact the transplant team if your child has ANY exposure to chickenpox OR shingles, as either can transmit the virus and cause chickenpox in a child. While an exposure is NOT an emergency, it is important to notify the team as soon as possible so that we can determine if your child needs preventative medicine. However, if your child has a rash or symptoms that are concerning for chickenpox or shingles, you should notify the team immediately so that the transplant team can decide if and what type of treatment your child needs. After transplant, we do not recommend that your child receive a chickenpox vaccine; however, it is safe for your child s siblings to get this vaccine. The transplant team will check for the virus in the blood regularly. If EBV is found in the blood, the liver team will continue to watch for symptoms. The liver team may decide to lower the dose of the anti-rejection medicines. The lower dose of medicine can help the body to fight the EBV infection. EBV can infect different parts of the body. In transplant patients, important symptoms to watch for and report to your nurse or doctor are: Fever Swelling of lymph nodes Diarrhea Vomiting Blood in the stool Decreased appetite Weight loss Abdominal pain Extreme tiredness The transplant team will also watch for the following: Low white blood cell count Low albumin Low hemoglobin Enlarged lymph nodes In about 1 in 20 patients, EBV can develop into a more serious problem called Post-Transplant Lymphoproliferative Disease (PTLD). PTLD is a type of blood cancer, usually caused by EBV. If the transplant team is concerned about PTLD, they may decide to do more testing. These tests may include: CT, endoscopy, PET scan and biopsy. The liver team will work with Cancer Specialists if a patient has PTLD. PTLD can be cured in greater than 90% of the cases. Our team takes great steps to watch for and prevent PTLD. Epstein Barr Virus (EBV) EBV or the mono virus is a common virus. Most adults have been exposed to this virus at some point in their lives. In people who have had a liver transplant, EBV may cause a wide range of symptoms. The symptoms may be more severe: When children are on higher doses of anti-rejection medicines During the first year after transplant With the first exposure to EBV 32 PEDIATRIC LIVER CARE CENTER

39 Cytomegalovirus CMV CMV is a common virus. Most adults are exposed to this virus at some point in their lives. Some people do not have any symptoms while others may have a wide range of symptoms. After transplant, patients take a medicine, called an antiviral, to help prevent CMV infection. The medicine is usually taken for about 4 months after the transplant. If your child has symptoms of CMV, the liver transplant team will check his or her blood for the virus. CMV can infect different parts of the body. Symptoms of CMV may include: Neutropenia Neutrophils are a type of white blood cells that fight infection. Neutropenia is when a patient has a low number of neutrophils in their blood. This can increase their risk for infection. Neutropenia can be caused by: Viruses Autoimmune issues Bone marrow issues Medicine side effects We use the absolute neutrophil count (ANC) to check your child s neutrophil levels. In most cases, the ANC should be above 1,000. Blood in the stool Chronic cough Changes in vision Diarrhea Fever Vomiting Noisy breathing High levels of liver enzymes Low platelet count Low white blood cell count Treatment for neutropenia may include: Changing medicines Giving a medicine that increases the ANC Evaluation by a Hematologist (doctors who study problems with the blood) Pneumocystis Pneumonia (Pneumocystis Jirovecii/PCP) This is a serious infection in the lungs. Children on medicines that weaken their immune system are at risk for this type of infection. We prevent PCP by keeping patients on a special medicine (antibiotic) for 1 year after transplant. Call your child s doctor right away if he or she has any of these signs or symptoms of PCP: Fever Cough Wheezing Shortness of breath, especially with activity Rapid breathing Feeling more tired than usual, poor energy level Weight loss Chest pain with breathing PREVENTING INFECTION The best ways to prevent infection are to: Wash your hands Avoid people who are sick 33

40

41 Education After Transplant

42 Important Things to Learn After Transplant It is our goal to help your child feel well again and to teach you what you need to know to take care of your child at home. Our team will help you learn about: Your child s new medicines How to care for your child s surgery incision sites How to care for long-term IV (central line) How to care for external drain When to call your transplant team Blood pressure monitoring Other things special to your child s care We want you to be able to show us that you understand this teaching by being able to: Measure and give medicines correctly Take your child s blood pressure and tell us what those numbers mean Tell us why your child is taking each medicine Protect and take care of the special IV Watch for and report the signs of infection or rejection Tell us reasons why you would call your liver transplant team Successful completion of 24-hour transitional care»» Transitional care is a time, while still in the hospital, when you and a second caregiver stay with your child and provide all of his or her care for an entire day and night. Nurses still check in on your child and are available for questions. If your child will need nursing care at home, you will also meet with the home health care nurses. These nurses will help you learn how to care for feeding tubes, special IVs and pumps. Before your child leaves the hospital, your liver transplant nurse will help you get your child s medicines and set up a schedule for medicines. You will get your first post-transplant clinic appointment and lab schedule. We hope you will partner with us in this learning. Be sure to ask us questions and point out the things that you don t understand. If you have ideas that might work better to help you learn, please let us know what we can do to make this time easier. 36 PEDIATRIC LIVER CARE CENTER

43 Medicines After Transplant WHY IS TAKING MEDICINE IMPORTANT? TYPES OF MEDICINES It helps prevent rejection, infection and other complications that can happen after transplant. Forgetting to take your medicine may lead to additional admissions to the hospital. Many times you will feel well and you may think that you do not need to take your medicine anymore, but you will always need medicine to prevent rejection. Your transplant doctor may change your medicines over time based on your needs. Here is an overview of the types of medicines your child will need to take following liver transplant. For more detailed information, please see the medication index at the back of the book. Medicines to prevent rejection: These medicines are used to keep your child s body from attacking or rejecting their new liver. Your child will need to take this type of medicine for their lifetime following liver transplant. This type of medicine increases your child s risk for infections. HOW CAN I REMEMBER TO TAKE MY MEDICINES? Store your medicines in a place that will help to remind you to take them every day, such as:»» The bathroom when you brush your teeth in the morning»» The kitchen when you eat meals. Set an alarm to remind you it is time to take your medicines. Keep your medicines organized.»» Place your medications in a pill box every week so you can tell whether you took them.»» Make sure that your medicines are stored where young children cannot get to them. The Transplant team will monitor the drug levels of certain medicines to make your child is safe. Medicines to prevent and treat infection: These medicines help protect your child from infection caused by bacteria, viruses and yeast. Anti-rejection medicines weaken your child s immune system, which may lead to infection. Your child will be on certain medicines for several months after transplant to prevent infection. Medicines to control blood pressure: Your child may have high blood pressure because of the combination of medicines they are required to take. These medicines are usually able to be weaned over the first few months after transplant. Medicines to correct electrolyte levels: Side effects of medicines your child is required to take can change the amount of electrolytes in the bloodstream. These medicines help keep the electrolytes in the bloodstream normal. Medicines to correct fluid imbalances: There are many reasons why children might retain extra fluid in the body following liver transplant. These medicines help your child s body get rid of the excess fluid. 37

44 Medication Tips Know your child s medicines.»» Learn both the generic and brand names of each medication: Often, the generic names are written first and the brand names are in parenthesis.»» You should always know why your child is taking each medicine. Give all of your child s medicines exactly as directed by your doctor.»» Medicines come in a variety of shapes/forms.»» If your child can t swallow a pill, please let us know.»» Some medicines cannot be crushed or split.»» We will work with you to find the best way for your child to get his or her medicine.»» Your child will be on anti-rejection medicine their entire life.»» Some medicines must be taken the same way every day (for example, with food or on an empty stomach) or separated from other medicines. The team will work with you and your child to design a medicine schedule that fits your home routine.»» If you miss a dose, take it as soon as possible.»» If it is almost time for your next dose (within 4 hours), do not take both the missed dose and the next dose, only take ONE dose. Check with your liver doctor or nurse before taking other medicines, such as over-the-counter drugs or herbal supplements. Please let them know if another doctor prescribes any medicines. This is to make sure it does not interact with your anti-rejection medicines or your child s liver function. Keep all of your medicines away from heat and direct light. Do not keep medicines in the bathroom cabinet since heat and moisture can cause the medicines to break down and not work the way they should. It is important to always have enough medicine with you so that your child doesn t miss any doses. If your child is on his or her last refill, please let your nurse know so refills can be sent in to your pharmacy on time. REGARDING MEDICINE USAGE It is important to talk to your team before starting or stopping any medicines. 38 PEDIATRIC LIVER CARE CENTER

45 Preventing Rejection These anti-rejection medicines are used to keep your child s body from attacking or rejecting their new liver. ANTITHYMOCYTE GLOBULIN (RABBIT) (THYMOGLOBULIN) PREDNISONE (TABLET), PREDNISOLONE (LIQUID), METHYLPREDNISOLONE (IV) How does it work? It prevents rejection by decreasing the immune system s response. It may be used to treat rejection if steroids don t work (steroid resistant rejection). It may also be used with other medicines at the time of transplant to protect children who have kidney problems How do I give or take this medicine? It is given through an IV in the hospital. What side effects can this medication cause? Generalized»» Fever»» Chills»» Diarrhea»» Pain»» High blood pressure»» Difficulty breathing»» Increased potassium levels»» Fast heartbeat Low white blood cell count or low platelet count Feeling dizzy. Have your child get up slowly over a few minutes when sitting or lying down. Have your child be extra careful climbing stairs. Headache Upset stomach or throwing up Loose stools (diarrhea) Unsafe allergic effects may rarely happen How does it work? Each of these medicines is a steroid. These medicines reduce inflammation and decrease immune system response to help prevent and treat rejection. It is used immediately after transplant and with each rejection episode. After transplant, the steroid dose is weaned weekly if liver tests remain stable. Most patients will be completely weaned off steroids in three to four months after transplant. How do I give or take this medication? Comes in IV, liquid and pill form What side effects can this medication cause? Increased blood pressure Your child may have more chance of getting infections. Avoid crowds and people with infections, colds or flu. High blood sugar. This most often goes back to normal when drug is stopped. Upset stomach or throwing up, belly pain, feeling more hungry, weight gain Change in body fat, round full face (moon face) Weak bones with long-term use Muscle weakness, mostly in the thighs and upper arms Skin changes (pimples, stretch marks, slow healing, hair growth) Skin sensitive to sun (use sunscreen) Mood changes, trouble sleeping 39

46 PROGRAF (TACROLIMUS, FK506) How does it work? This is an immunosuppressant medicine. It prevents rejection by decreasing the immune system s response to the new liver. It may be used by itself or with other anti-rejection medicines. How do I give or take this medication? Comes in capsule and liquid form. We prefer the capsule form of Prograf because it provides more stable levels of Prograf in the blood. Must be taken on time. Must be given within 30 minutes of the scheduled time. Must be given the same way with each dose to keep a stable level. For example, if it is taken by mouth (versus through a tube), it should be given by mouth every day. If it is taken with food, give it with food every day. Avoid eating or drinking grapefruit, grapefruit juice and pomegranate products while taking this medicine. What if a dose of Prograf is thrown up? WHAT TO DO IF A DOSE OF PROGRAF IS THROWN UP What side effects can this medication cause? Increased blood pressure Trembling or shaking hands Headaches, sleep problems Kidney problems Upset stomach, diarrhea Hair loss High potassium levels, low magnesium levels, high blood sugar Upset stomach or throwing up, belly pain, loose stools (diarrhea) Increased hair growth Swollen gums Drug levels: Drug levels are monitored through blood tests Labs should be drawn within 1.5 hours before the next scheduled dose Your liver doctor and nurse coordinator will discuss the appropriate range for your child Time from Taking Dose to Vomiting Amount of Dose to Give Where we want the drug level to be is determined by:»» Time since transplant»» Rejection episodes 0 30 minutes Entire Dose»» Current infections 30 minutes 1 hour Half the Dose More than 1 hour Do NOT Give If your child vomits again after the second dose, call the liver office for help. The levels of Prograf may increase or decrease when new medicines that may interact with Prograf are started. Check with your nurse/hepatologist before starting any new medicines. 40 PEDIATRIC LIVER CARE CENTER

47 RAPAMUNE (SIROLIMUS) How does it work? This is an immunosuppressant medicine. It prevents rejection by decreasing the immune system s response. It may be used by itself or with other anti-rejection medicines. It can be used only after the first month from transplant. How do I give or take this medication? Comes in a pill and liquid form. Must be taken on time. Must be given within 30 minutes of the scheduled time. Must be given the same way with each dose to keep a stable level. For example, if it is taken by mouth (versus through a tube), it should be given by mouth every day. If it is taken with food, give it with food every day. Avoid eating or drinking grapefruit, grapefruit juice and pomegranate products while taking this medicine. What if a dose of Rapamune is thrown up? What side effects can this medication cause? Increased triglyceride and cholesterol levels Your child may have more chance of getting infections. Avoid crowds and people with infections, colds, or flu. Headache Anemia, low platelet count Mouth Sores Upset stomach or throwing up Hard stools (constipation) Acne Drug levels: Drug levels are monitored through blood tests Labs should be drawn within 1.5 hours before the next scheduled dose Your liver doctor and nurse coordinator will discuss the appropriate range for your child. The goal drug level range is determined by: WHAT TO DO IF A DOSE OF RAPAMUNE IS THROWN UP»» Time since transplant Time from Taking Dose to Vomiting Amount of Dose to Give»» Rejection episodes»» Current infections 0 30 minutes Entire Dose 30 minutes 1 hour Half the Dose More than 1 hour Do NOT Give If your child vomits after a second dose, call the liver office for help. The levels of Rapamune may increase or decrease when new medicines that may interact with Rapamune are started. Check with your nurse coordinator/hepatologist before starting any new medicines. 41

48 CELLCEPT (MYCOPHENOLATE, MOFETIL, MMF) How does it work? This is an immunosuppressant medicine. It is used with other anti-rejection medicines to decrease the body s immune response to the new liver. How do I give or take this medication? Comes in liquid and pill form Women of child-bearing age must use two acceptable forms of birth control while on this medication. Routine follow up will include discussions on sexual health and lab monitoring to rule out pregnancy for females > 12 years of age who are on this medication. Give at least 1 hour before or 2 hours after any magnesium or magnesium-containing products (such as magnesium oxide, antacid pills). What side effects can this medication cause? Vomiting, diarrhea Headache Your child may have more chance of getting infections. Avoid crowds and people with infections, colds, or flu. Belly pain or heartburn Upset stomach or throwing up Feeling dizzy. Have your child get up slowly over a few minutes when sitting or lying down. Have your child be extra careful climbing stairs. Anemia, low white blood cell count and low platelet count Loose stools (diarrhea) 42 PEDIATRIC LIVER CARE CENTER

49 Notes 43

50 Preventing or Treating Infection These medicines help protect your child from infection caused by bacteria, viruses and yeast. Anti- rejection medicines weaken your child s immune system. Your child may not be able to fight infections the same way as before transplant. Acyclovir (Zovirax ) Use How to Give or Take Side Effects Headache Antiviral Prevents or treats herpes virus infections Comes in liquid or pill form Can be taken with or without food It can also be given in the IV form in the hospital Feeling dizzy. Have your child get up slowly over a few minutes when sitting or lying down. Have your child be extra careful climbing stairs. Upset stomach or throwing up Loose stools (diarrhea) Ganciclovir (Cytovene ) Use How to Give or Take Side Effects Antiviral Prevents and treats cytomegalovirus (CMV) infections Given in the IV form in the hospital Anemia, low white blood cell count and low platelet count Fever and chills Upset stomach or throwing up Loose stools (diarrhea) Valganciclovir (Valcyte ) Use How to Give or Take Side Effects Antiviral Prevents and treats cytomegalovirus (CMV) infections Available in pill and liquid form Give this drug with food Anemia, low white blood cell count and low platelet count. High blood pressure Fever Headache Belly pain, upset stomach or throwing up Loose stools (diarrhea) Fluconazole (Diflucan ) Use How to Give or Take Side Effects Antifungal Prevents and treats fungal infections Comes in a liquid and pill form In the hospital it can also be given through an IV. Give this drug with or without food. Give with food if it causes an upset stomach. Headache Belly pain Upset stomach or throwing up Loose stools (diarrhea) 44 PEDIATRIC LIVER CARE CENTER

51 Nystatin (Mycostatin ) Use How to Give or Take Side Effects Antifungal Treats yeast infections in the mouth, throat and intestine Comes in a liquid form Swish in the mouth for about 2 minutes and then swallow Wait 10 minutes before eating or drinking Upset stomach or throwing up Sulfamethoxazole/Trimethoprim (Bactrim, Septra ) Use How to Give or Take Side Effects Antibiotic Used to fight a certain type of pneumonia that can occur in transplant patients. If your child is allergic to sulfamethoxazole/trim ethoprim, he/she may receive pentamidine. Comes in liquid or pill form It can also be given in the IV form in the hospital Give this drug with or without food. Give with food if it causes an upset stomach. Usually given one year after transplant and after any rejection episodes Upset stomach or throwing up Not hungry Loose stools (diarrhea) Skin rash Skin sensitive to sun (use sunscreen) Low white blood cell count Pentamidine (NebuPent ; Pentam 300) Use How to Give or Take Side Effects Antibiotic Used to prevent or treat a certain type of pneumonia that can occur in transplant patients It may be used if your child is not able to take Sulfamethoxazole/ Trimethoprim (Bactrim, Septra ). Given IV in the hospital or as an inhaled breathing treatment 1. Pentamidine comes as a solution to be inhaled directly to your lungs using a nebulizer. It usually is used once every 4 weeks. 2. The IV form of the drug will be added to an intravenous fluid that will drip through a needle or catheter placed in your child s vein for 90 minutes. Given monthly for one year after transplant or for 6 months after a rejection Feeling dizzy. Have your child get up slowly over a few minutes when sitting or lying down. Have your child be extra careful climbing stairs. Bad taste in your mouth Cough Feeling tired or weak Not hungry, upset stomach or throwing up. Many small meals and good mouth care may help. Older children may suck hard, sugar-free candy. Low blood sugar may occur. Signs may be dizziness, headache, feeling sleepy, feeling weak, shaking, a fast heartbeat, confusion, hunger, or sweating. Keep glucose tablets or liquid glucose on hand for low blood sugar. Anemia, low white blood cell count, low platelet count 45

52 Chlorhexidine Gluconate (Peridex) Use How to Give or Take Side Effects Antibiotic oral rinse Helps treat/prevent mouth infections Mouth rinse Swish in the mouth for 30 seconds and spit the medicine out Do not swallow May also be swabbed in the mouth Do not allow your child to eat or drink for 30 minutes after the dose. Mouth and lip irritation May cause food to taste different or leave a bad taste in the mouth Using a soft toothbrush or cotton swabs and rinsing the mouth may help. Do not use mouth rinses that have alcohol in them. It may stain teeth Cytomegalovirus Immune Globulin (Cytogam) Use How to Give or Take Side Effects This medicine is used to prevent and treat cytomegalovirus (CMV) disease. It is given through an IV over a period of time Flushing Upset stomach or throwing up Allergic side effects may rarely happen. Immune Globulin (IVIG) Use How to Give or Take Side Effects It is used to supply antibodies to lessen or prevent infection. IGIV boosts the body s natural response in patients with compromised immune systems. It is given through an IV in the hospital. It may also be given SubQ; as an infusion under the skin over a period of time. Headache Fever Feeling tired or weak High blood pressure Chills, flushing, tightness in the chest and difficulty breathing 46 PEDIATRIC LIVER CARE CENTER

53 Controlling Blood Pressure Because of the combination of medicines your child needs to take, they are more likely to have high blood pressure. These medicines are used to treat high blood pressure: Clonidine (Catapres-TTS; Duraclon) Use How to Give or Take Side Effects Oral: Used to treat high blood pressure or decrease stool output Available in pill, liquid and topical patch Give this drug with or without food; Give with food if it causes an upset stomach Skin patch: First take off old patch Apply patch to clean, dry, healthy skin on the chest, back or belly Rotate patch sites weekly; move the site with each new patch. If the patch loosens, put tape over it to hold it in place. Put a missed patch on as soon as you think about it after taking off the old one Start a new timetable after the patch is put back on Do not put on 2 doses or extra doses Feeling more sleepy, having blurred eyesight, or a change in thinking clearly. Have your child avoid tasks or actions that call for him/her to be alert or have clear eyesight until you see how this drug works. Feeling dizzy. Have your child get up slowly over a few minutes when sitting or lying down. Have your child be extra careful climbing stairs. Hard stools (constipation) Dry mouth Dry eyes Skin irritation Enalapril (Vasotec ) Use How to Give or Take Side Effects Used to treat high blood pressure. It can also be used to treat proteinuria, a condition in which urine contains an abnormal amount of protein. Comes in pill and liquid form Give this medicine with or without food Give with food if it causes an upset stomach. Feeling dizzy. Have your child get up slowly over a few minutes when sitting or lying down. Have your child be extra careful climbing stairs. Headache Bad taste in your mouth. This often goes back to normal. Cough Increased potassium levels Amlodipine (Norvasc ) Use How to Give or Take Side Effects Used to treat high blood pressure Comes in pill and liquid form Give this medicine with or without food Give with food if it causes an upset stomach Feeling dizzy. Have your child get up slowly over a few minutes when sitting or lying down. Have your child be extra careful climbing stairs. Hard stools (constipation). Drinking more liquids, working out, or adding fiber to your diet may help. Changes to your child s gums Swelling in the arms or legs 47

54 Correcting Electrolyte Levels Electrolytes are minerals that help keep the body s fluid levels in balance. Examples of electrolytes are potassium, phosphorus, magnesium and calcium. Side effects of medicines can change the amount of electrolytes in the blood stream. These medicines help keep the electrolytes in the bloodstream normal. Magnesium Oxide Use How to Give or Take Side Effects Used to correct low magnesium levels Comes in a tablet form Can take with or without food Ask your coordinator if it needs to be separated by any other medication your child is taking Diarrhea Abdominal cramps Fludrocortisone (Florinef ) Use How to Give or Take Side Effects This medicine is used to prevent high potassium levels. Comes in a tablet form Can be taken with or without food. Give this drug with food to stop an upset stomach. High blood sugar may cause diabetes while on this drug Belly pain Muscle weakness, mostly in the thighs and upper arms Potassium Chloride Use How to Give or Take Side Effects This medicine is used to prevent or correct low potassium levels; It is used to put potassium back in the body. Comes in a tablet and liquid form Can be taken with or without food Belly pain. Infant may pull legs to belly and cry. Upset stomach or throwing up Loose stools (diarrhea) Potassium Phosphate; Sodium Phosphate Use How to Give or Take Side Effects This medicine is used to prevent or correct low phosphorus levels. Comes in tablet and powder form Can be taken with or without food Belly pain Upset stomach or throwing up Loose stools (diarrhea) 48 PEDIATRIC LIVER CARE CENTER

55 Correcting Fluid Imbalances There are many reasons why children with liver disease or after transplant might retain extra fluid in the body. These medicines help your child s body get rid of the extra fluid: Spironolactone (Aldactone) Use How to Give or Take Side Effects Diuretic It is used to get rid of extra fluid. It is also used to treat high blood pressure. Comes in liquid or pill form Can be taken with or without food High potassium level. Signs include feeling weak, lightheaded, dizzy, feel like passing out, or have numbness or tingling. Feeling dizzy. Have your child get up slowly over a few minutes when sitting or lying down. Have your child be extra careful climbing stairs. Upset stomach or throwing up. Many small meals and good mouth care may help. Chlorothiazide (Diuril) Use How to Give or Take Side Effects Lowered blood pressure Diuretic This medication helps to lower blood pressure. It also decreases excess fluid in the body. Comes in liquid and pill form Can be taken with or without food Feeling dizzy Upset stomach, nausea Vomiting Weakness Low potassium, low magnesium, low sodium Increased uric acid levels Furosemide (Lasix) Use How to Give or Take Side Effects Diuretic It is used to get rid of extra fluid. Comes in liquid and pill form Can be taken with or without food Signs of low potassium levels like muscle pain or weakness, muscle cramps, or a heartbeat that does not feel normal Headache Belly pain. Infant may pull legs to belly and cry. Loose stools (diarrhea) More wet diapers Upset stomach or throwing up Dry mouth 49

56 Other Medicines Aspirin (Baby ASA) Use How to Give or Take Side Effects This medicine prevents blood clotting following transplantation. Comes in pill form Take with or without food. Take with food if it causes an upset stomach. Belly pain or heartburn Upset stomach or throwing up Filgrastim (Granulocyte colony-stimulating factor, G-CSF, Neupogen) Use How to Give or Take Side Effects Colony Stimulating Factor. This medicine is used to treat low white blood cell counts; it stimulates the production of white blood cells. It may be given in IV form or as a subcutaneous injection. It is given as a shot into the fatty part of the skin or it is given as a shot into a vein. Before giving the shot, bring it to room temperature. Wash your hands before and after use. Throw syringe away after use. Do not use more than one time. Throw away needles in a needle/sharp disposal box. When the box is full, follow all local rules for getting rid of it. Bone pain Headache Irritation where the shot is given Feeling tired or weak Upset stomach or throwing up 50 PEDIATRIC LIVER CARE CENTER

57 Pantoprazole (Protonix ); Lansoprazole (Prevacid ); Omeprazole (Prilosec ) Use How to Give or Take Side Effects Comes in liquid, capsule and tablet form. May also be given IV the hospital Capsule: These medicines are used to prevent and treat stomach irritation and ulcers by decreasing the amount of acid made by the stomach. Have your child swallow capsule whole. Do not let your child chew, break, or crush. You may sprinkle contents of capsule on 1 tablespoon (15 ml) of applesauce, Ensure pudding, cottage cheese, yogurt, or strained pears. Do not let your child chew the granules. You may mix contents of capsule with 60 ml of apple, orange, or tomato juice. Have your child swallow right away. Do not let your child chew the granules. If your child has a feeding tube, open the capsule and mix it with 3 tablespoons (45 ml) of apple juice. Give in the feeding tube. Flush the feeding tube before and after this drug is given. Headache Belly pain Hard stools (constipation) Oral-disintegrating tablet: Place on your child s tongue and let it melt. Water is not needed. Do not let your child swallow it whole. Do not let your child chew, break, or crush it. 51

58 Index of Medicines Pg. Medication Brand Name Type 44 Acyclovir Zovirax Antiviral 47 Amlodipine Norvasc Antihypertensive 39 Antithymocyte Globulin (Rabbit) Thymoglobulin Immunosuppressant 50 Baby Aspirin Baby ASA Antiplatelet 46 Chlorhexidine Gluconate Peridex Antibiotic oral rinse 49 Chlorothiazide Diuril Diuretic 45 Clonidine Catapres-TTS, Duraclon Antihypertensive N/A Cyclosporine Neoral, Sandimmune, Gengraf Immunosuppressant 46 Cytomegalovirus Immune Globulin Cytogam Immune product 47 Enalapril Vasotec Antihypertensive 50 Filgrastim Granulocyte colony-stimulating factor, G-CSF, Neupogen Immune Product 44 Fluconazole Diflucan Antifungal 48 Fludrocortisone Florinef Steroid 48 Furosemide Lasix Diuretic 44 Ganciclovir Cytovene Antiviral 46 Immune Globulin (IVIG) Immune Product 51 Lansoprazole Prevacid Acid Reducer 48 Magnesium Oxide Supplement 42 Mycophenolate Mofetil CellCept, MMF Immunosuppressant 45 Nystatin Mycostatin Antifungal 51 Omeprazole Prilosec Acid Reducer 51 Pantoprazole Protonix Acid Reducer 45 Pentamidine NebuPent, Pentam 300 Antibiotic 48 Potassium Chloride Supplement 48 Potassium Phosphate Sodium Phosphate Supplement 39 Prednisone (oral) Prednisolone (oral) Methylprednisolone (IV) Steroid 41 Sirolimus Rapamune Immunosuppressant 49 Spironolactone Aldactone Diuretic 45 Sulfamethoxazole/Trimethoprim Bactrim, Septra Antibiotic 40 Tacrolimus Prograf, FK506 Immunosuppressant 44 Valganciclovir Valcyte Antiviral 52 PEDIATRIC LIVER CARE CENTER

59 Notes 53

60 Taking a Blood Pressure Because of the possible side effects of post-transplant medicines, children older than 3 years of age will need to have their blood pressure taken twice a day. Nurses from our team will help you learn how to take your child s blood pressure. HOW TO TAKE A BLOOD PRESSURE 1. Have your child in a sitting position for 3 to 5 minutes before taking the blood pressure. Rest his or her arm on a table so that it is at the same level of the heart. 8. When all sounds disappear, deflate the cuff rapidly and completely. 9. If you need to repeat taking the blood pressure, wait at least one minute before taking it again. 2. Applying the blood pressure cuff: a. Place the cuff over the inner part of the arm about 1 inch above the crease at the elbow. b. Make sure the cuff is not applied over any clothing. You must use a bare arm only. c. Fit the cuff closely against the arm, but allow enough room under the cuff to fit two of your fingers. 3. Apply the round part of the stethoscope lightly over the inner part of the arm so that there is no air between the skin and the stethoscope. 4. Tighten the screw to close the valve of the bulb and squeeze the bulb to inflate the cuff. The nurse will tell you how much to inflate the cuff when teaching you how to take the blood pressure. Remember to inflate the cuff rapidly and steadily. 5. Loosen the screw to release the pressure in the cuff at a slow and steady rate. Keep a close eye on the gauge as you release the pressure. The arrow on the gauge should drop 2 3 numbers every second. 6. As the pressure falls, listen carefully for and make a mental note of the following sounds: a. Systolic pressure: the point at which faint, clear tapping sounds first appear. b. Diastolic pressure: the point at which the sounds disappear. 7. Record these two levels as (for example): Systolic pressure/diastolic pressure 120/76 54 PEDIATRIC LIVER CARE CENTER

61 Blood Pressure Record When Should You Contact Us Blood Pressure Systolic Reading (top number) less than Blood Pressure Diastolic Reading (bottom number) less than and/or greater than and/or greater than Call the Transplant Office: Gastroenterology Liver Fellow On-Call: ; Blood Pressure Records Date AM Blood Pressure PM Blood Pressure Comments 55

62 When to Call the Transplant Team You may have seen these contact numbers before, but it is important for you to call our team if you have questions or concerns. To reach the Transplant Office: or ext Monday Friday, 8 am 4:30 pm During weekday office hours, If you need to speak to your nurse right away, we ask that you call the phone number listed above and ask for urgent help. Your child s nurse or doctor can be paged by our office staff. After office hours and on weekends please call: or Ask to speak with the Liver Doctor on-call PLEASE DO NOT leave urgent messages on voic . We also ask that you do not send s that have medical questions or updates about your child. We want to know RIGHT AWAY if your child has: Fever above degrees Fahrenheit (38 degrees Celcius), under the arm or by mouth Please call the transplant team within 24 hours for any of the following: Fevers greater than 100 degrees Fahrenheit (37.7 degree Celsius) under the arm or by mouth for longer than 24 hours Diarrhea for longer than 24 hours Light colored poop Belly pain or swelling Vomiting more than 3 times in 24 hours Not able to take medicines and keep them down Exposure to chickenpox or shingles Bloody or smelly pee Hurts to pee Jaundice (yellow color) in eyes or skin Rash A dental visit or procedure Systolic blood pressure above in a row Diastolic blood pressure above in a row when taken 2 times when taken 2 times Concern for active chickenpox or shingles Shortness of breath A Seizure More than usual amounts of being too irritable/fussy or sleepy Redness, drainage, or swelling at incision site Any urgent changes in your child s condition 56 PEDIATRIC LIVER CARE CENTER

63 MEDICINE REFILLS INSURANCE APPROVALS FOR MEDICINE Our team is here to help you get your child s medicines in a timely manner. Here are some tips for getting medicine refills: Keep close track of the amount of medicine your child has left Call your pharmacy for a refill when there is about 7 days left in your child s medicine supply For quicker service, call your pharmacy for a refill. Your pharmacy will call our office to get the refill. How to reach us for a medicine refill: Call our office during regular business hours Monday Friday 8 am 4:30 pm Our office is closed on weekends and holidays. If you leave a message on our voic for a refill when the office is closed, we will not get the request on the next business day. FOR URGENT refills or medicine needs after office hours, please call the on-call liver doctor or The doctor may only be able to call in enough medicine to last until our office is open again. Your care manager will review your child s chart before being able to ask your doctor for a full refill order. Your insurance company may require a review before allowing certain medicines and treatments to be covered by your plan. This review, called prior authorization (PA), is not meant to delay treatment or cut costs. It is designed to provide safe services to you and your family. Our office does not control this process. Here is some information about this review process: The insurance review can take up to 1 week Not all medicines require this review If the insurance company wants to review a medicine, your pharmacy should call our office to start the process rolling If more than 3 days have passed and you have not heard from our office or your pharmacy about the review, call us to get an update What to do if a medicine is denied or rejected by the insurance company: Call our office There are often ways to appeal their decision The insurance company may ask the health care provider to use a different medicine 57

64

65 Getting Back to Life at Home

66 Use Extra Caution Congratulations! You and your family have been planning for the day that you can go home. You have all learned so much about caring for your child after liver transplant. Other families have shared that even though they learned so much in the hospital, there were many other questions that they had when they got home. Families tell us, We got used to not being at home, now we have to get used to being back. What may have seemed simple, everyday things to you before transplant may now be things you have questions about after transplant. Here are some of the most frequent issues families have had questions about after they are home: HAND WASHING PETS Good hand washing is an important way to help prevent the spread of infection. Everyone who comes in contact with your child should practice good hand washing. Use warm water and soap and scrub well for 1 minute (sing the alphabet song) Be sure to scrub between your fingers and under your nails Wash your hands before eating and preparing food Wash after going to the bathroom or changing diapers Wash after playing with pets Avoid putting your hands and fingers in your mouth We know that pets may be an important part of your family. Be sure your pets are healthy and have all recommended vaccines. Make sure your pet gets its required check-ups. Your child should not handle your pet s body fluids and waste (cleaning cages and fish tanks, emptying litter boxes, etc.). These are pets to avoided because of risk of bacteria they may carry: Reptiles (example: snakes) Guinea pigs Turtles Rabbits Amphibians (example: frogs) Caged birds, such as Hamsters parrots and parakeets It is just as important that your child keep his or her hands clean as well. SWIMMING Avoid swimming in ponds, lakes and rivers. These types of water are called standing and are more likely to have bacteria that are harmful to you child. When your doctor says it is OK, your child may swim in private pools and oceans. Public pools should be avoided for at least one year after transplant. Ask your team before your child takes part in any water activities. 60 PEDIATRIC LIVER CARE CENTER

67 CROWD CONTROL FOOD SAFETY Your child should avoid crowds for at least the first 90 days after transplant. Your child will need to wear a mask when outside the home and in closed areas for the first 90 days after transplant. Places to avoid during the first 90 days after transplant include: Malls Restaurants Church Movie theaters School Concerts Daycare It is important for your child to get regular play and exercise once they are able. When the weather permits, we encourage outdoor play to keep your child active. Call your care manager if your child is exposed to any contagious diseases such as: Chickenpox Mumps Shingles RSV Mono Whooping cough Measles Meningitis Sometimes infection can be spread through food and can be a risk for transplant patients. Below are some guidelines for handling food: Avoid raw or undercooked meat, including sushi Thoroughly wash fresh fruits and vegetables Follow sell buy dates For dairy products, use only pasteurized products Properly store all food Wash all surfaces and knives that come in contact with raw meats and fish IMMUNIZATIONS After transplant, your child may NEVER receive live immunizations (rotavirus, MMR, varicella, oral polio, flu mist). Other immunizations should be able to be continued 3 to 6 months after transplant. Always review immunizations with your liver transplant team before your child receives them. For more information on the immunization schedule, visit the CDC website at SUN EXPOSURE Medicines that are used to prevent rejection can put your child at higher risk for skin cancer. Your child should always use sunscreen with a sun protection factor (SPF) of at least 30 to protect their skin from the sun. Apply sunscreen 30 minutes before going out in the sun. It is important to follow the sunscreen label directions on when to reapply the sunscreen. Most sunscreens should be reapplied at least every 2 hours and after your child has been in the water. All children, regardless of skin color, should wear sunscreen. It helps to use protective clothing such as hats, swim shirts and umbrellas. We also ask that our transplant patients not use tanning beds. BEING AROUND PEOPLE Your child should avoid crowds and wear a mask in public for 90 days after the transplant. It is best to keep your child away from people who are sick. 61

68 TRAVEL We ask that you discuss any flight plans with your transplant team as commercial air travel may be discouraged pre- and post-transplant. Discuss any travel plans outside of the United States with your transplant team. Certain precautions and immunizations may be recommended. The CDC website ( is also a good resource when traveling outside of the United States. When traveling, make sure you have enough medicine for your entire trip and take extra in case your trip becomes longer than expected. Keep your medicines in your carry-on bag if you travel by air. Check with your airline regarding any restrictions. In case of emergencies while traveling, make sure you know where to find the closest hospital and/or transplant center. PIERCINGS AND TATTOOS Your child should not get any ear or body piercings or tattoos until you talk to the transplant doctor. These things could put your child at risk for infection. EMOTIONAL ADJUSTMENT The transplant journey can be emotionally difficult for your child and the whole family. Each person handles stress differently. We will talk with you and your child often and want you to share any stressors that you, your child or family may have. It is also common for your child s siblings to feel left out, act up and want more of your attention. Please call your transplant team if you, your child or family member is having trouble adjusting to life at home after transplant. We have people on our team who specialize in helping children and families through this time. Some signs of increased stress or problems adjusting to the transplant might include: Mood swings, acting out Feeling sad or worried Changes in sleep patterns Changes in school performance Stomachaches and/or headaches Overreaction to minor problems Bad dreams/nightmares Picking up new habits like thumb sucking, hair twirling, nose picking Not telling the truth, bullying Spending time alone, isolating from family and friends Some things that can help manage stress: Positive problem solving and coping skills Close, supportive relationships at home and school, with peers and adults Clear expectations Permission and ability to learn from mistakes Developing goals (academic, social, extracurricular and life skills) Consistent, positive discipline Ability to express feelings appropriately Feeling physically and emotionally safe Good nutrition and exercise Time to relax or do fun activities Some things that you can you do to help your child cope: Let your child know that is OK to feel angry, scared, sad, lonely and anxious Talk about the transplant and life after transplant, talk about stressful things. Be ready and available when your child is ready to talk with you. If your child will not talk about things, it is OK for you to talk about how certain things make you feel. Answer questions calmly and honestly Prepare children for potentially stressful events Encourage good nutrition, physical activity and rest Watch your own stress level, take care of yourself The transplant team will offer other resources to help you understand and manage stress. 62 PEDIATRIC LIVER CARE CENTER

69 Nutrition After Transplant Good nutrition is vital for growth and learning in all children. Children with liver disease or transplant have even more reasons to get good nutrition. Many liver functions relate to nutrition, so it is important to understand your child s nutritional needs both before and after transplant. The liver has many jobs that are vital to your child s nutrition: Breaking down proteins, fats and carbohydrates Storing vitamins A, D, E and K (fat-soluble vitamins) Making proteins (example: clotting factors) Removing waste products such as bilirubin and ammonia Making and getting rid of bile, which is needed for the breakdown and absorption of fats The right nutrition after liver transplant is important to your child s recovery. For at least the first day or more after surgery, your child will not be allowed to eat anything (this is called NPO ). Instead, a liquid form of nutrition may be given through the blood by an intravenous catheter (IV). The liquid, called Total Parenteral Nutrition (TPN), contains protein, carbohydrates, fat, vitamins and minerals. TPN usually starts one or two days after surgery. Oral feedings start after the intestine has woken up after surgery. Your child will start with a clear liquid diet and advance to a regular diet. Infants who needed special formula before transplant usually can use standard formula after transplant. While your child s body heals from transplant, they may need more calories than they are able to eat. Sometimes your child s regular diet may need to be supported with tube feedings. Your child s nutritional needs can be met with tube feedings for as long as needed. Often, tube feeding is used for just a short time and can be removed once your child is eating enough calories. Each transplant patient has their own nutritional needs. Our transplant dietitian will help review your child s needs each day while in the hospital and will remain involved as long as needed once your child goes home from the hospital. When your child begins eating, we will record of the amount of food and fluid he or she eats and drinks. The dietitian will talk with you about your child s nutritional needs throughout the hospital stay. Before your child goes home from the hospital, your dietitian will discuss the right diet for your child. After discharge, nutrition continues to play an important role in your child s ability to grow and build a strong body. Food supplies the energy needed to grow, play, learn and stay active and healthy. Offering a variety of foods is the best way to supply the nutrition your child needs. The Eating Right chart shows foods from the five major food groups. The chart shows the recommended number of servings per day plus serving sizes for the different age groups. Snacks are an important part of childhood nutrition. Three meals and 2 to 3 snacks per day help children meet their high-energy needs. Encourage nutritious options for snacks. Some snack ideas include: Fresh fruit Cereals Cheese Animal crackers Yogurt Carrot sticks Peanut butter, graham Fruit juice crackers Pretzels Remember that children learn by watching others, so be sure to set a good example by eating well-balanced meals and snacks. Fast foods are generally high in fat, sugar and salt. As long as children regularly get the proper nutrients at other meals and snacks, an occasional stop for fast food does no harm. However, be aware of the high sugar and caffeine content of most soft drinks, and encourage your child to drink fruit juice or milk instead. 63

70 COMMON NUTRITION-RELATED PROBLEMS Fluid and Salt Retention This problem may cause swelling of your child s hands, ankles and belly, a sudden increase in weight and higher blood pressure. Avoid this by decreasing the use of table salt and foods that are naturally high in salt, such as lunch meat, hot dogs, bacon, sausage, canned soup, most snack foods and foods containing monosodium glutamate (MSG). Read package labels carefully and follow your dietitian s guidelines. Vitamin and Mineral Deficiency Your child may be on extra vitamin/mineral supplements after transplant. Your team can talk with you more if your child will need extra vitamins. Muscle Weakness After Surgery Muscle weakness is related in part to the steroids that your child takes post-transplant. Steroids increase your child s need and desire for protein. Protein is essential to the diet and is important for growth, building strong body tissues and wound healing. Include high-protein, low-fat foods, such as lean beef, fish, poultry without the skin and low-fat dairy products in your child s diet. Weight Gain After Surgery Weight gain is also related to steroids that your child takes post-transplant. Steroids make you feel hungrier, which may lead to weight gain and water retention. You can avoid this problem by limiting high-fat and high-sugar foods to no more than one serving per day. Your child should drink low-fat milk and sugar-free drinks and eat more fruits and vegetables, which are low in calories and full of nutrients. If your child is hungry in between meals and snacks, drink water and find something to do (play a game or go outside and play). High Blood Sugar (Hyperglycemia) After Surgery Blood sugar or glucose is produced by the breakdown of sugar and starches. Sugar provides the energy your child s body needs for daily activities. When a part of the body needs energy, glucose is taken to that area by chemical called insulin. The steroids your child takes limit insulin s activity, so glucose is not transported and used, resulting in high blood sugar levels. If this occurs, the dietitian will advise you on the proper diet guidelines to maintain blood sugar levels. PATIENTS TAKING PROGRAF Children who take Prograf should not drink grapefruit juice. 64 PEDIATRIC LIVER CARE CENTER

71 When to See the Doctor Again WEEKS TO MONTHS AFTER TRANSPLANT The following medical equipment may still be in place at time of discharge: Children who live more than 60 minutes from Cincinnati Children s or who have limited transportation are asked to stay in the Cincinnati area after discharge from the hospital. The stay usually lasts 2 to 4 weeks, depending upon your child s recovery. Staying close helps families spend time together outside the hospital but ensures medical care is close by. Generally, the liver transplant team requires that your child stay at the Ronald McDonald House or a local hotel. These places are close to the hospital and many have reduced rates for lodging. Nasogastric Tube for Feeding (possible) Broviac Catheter (possible) In the first several weeks after discharge, your child will have frequent visits to the post-transplant clinic. A physical exam, review of nutrition, medicines and lab data will tell us how your child is doing. Lab tests are performed 3 times a week to monitor your child s progress and to make sure your child s liver is working well. Home health care nurses are important members of the liver transplant team. The nurses come to the Ronald McDonald House or your home or hotel to draw blood for lab tests, assess your child s condition, and provide continued education with central line, feeding tube and wound care. If there are any concerns about your child s progress and condition, it may be necessary to admit him or her to the hospital. During this time, you will work with the transplant team to get ready to go home. You will talk about timing of getting home. You will also plan what goals need to be met for your child to be able to get back home. 65

72 THE FIRST YEAR POST-TRANSPLANT ANNUAL APPOINTMENTS The first year after transplantation is usually the most difficult time. There are many changes in your family s life that take place. Lab tests, clinic visits and medicines become a priority. Many times, there are complications or problems after transplant (bile duct problems, infections or rejection) that happen after you go home. Sometimes these problems require admission back into the hospital. Once you return home, your local GI physician will help us with your child s care. The doctor will see your child as often as needed to closely monitor recovery and assess for any concerns. Your child will also need to continue to see your liver transplant team at Cincinnati Children s. The frequency of these visits will be based on your child s recovery, posttransplant complications and the comfort of your local GI team. You will also need to regularly keep in touch with your child s primary care physician. Please remember that the liver transplant team will work with you to make the transition from Cincinnati Children s to your home as smooth as possible. We are always available to answer questions and will continue to partner with you to provide the support needed for you and your child. Every year, near the anniversary of your child s transplant, your child will be scheduled for an appointment. During these appointments, your child usually will have blood tests, an abdominal ultrasound, a GFR (kidney test), a clinic appointment with your liver transplant doctor and nurse care manager, and any other testing that may be needed. The goal of the annual appointment is to be sure that: Your child s health is the best it can be The new liver is functioning well We address and prevent any post-transplant problems Update any research activities An abdominal ultrasound is done to make sure the blood flow to the liver is good and to rule out any fluid collections or bile duct problems. A GFR may be performed to assess the function of your child s kidneys. 66 PEDIATRIC LIVER CARE CENTER

73 Notes 67

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75 Things to Think About for Patients 18 & Over

76 Common Topics to Review Being a teenager can be tough enough. Being a teen or young adult with a chronic illness can make life even more difficult. The need for liver transplant can be hard to deal with, understand and accept. We know that if you are a teen with chronic illness, you are more likely to have concerns and fears when their illness or health care needs affect: Body image Relationships with family and friends Independence Tobacco Use Tobacco smoke is a risk to everyone s health. Smoking can cause cancer, lung disease and heart disease. These risks are a concern for both the smoker and anyone that is around the tobacco smoke (second-hand smoke). Smoking can also affect the absorption of some medicines. Other forms of tobacco are also discouraged. These are common topics you and your family need to discuss before and after transplant: Illegal Drug Use Illegal drug use and/or abusing pain medicines is not tolerated by any transplant center throughout any phase of your transplant journey. It can result in removal from the transplant waiting list, being denied for re-transplant, or the termination of medical care. Illegal drugs including, but not limited to, marijuana, cocaine, heroin, methamphetamine, LSD and Ecstasy are toxic and harmful to the liver and other organs. Marijuana can cause serious, life-threating fungal infections in people with weakened immune systems. Tattoos and Piercings There is a risk of infections with tattoos and piercings. Serious blood infections such as HIV and Hepatitis C can be passed from person to person if equipment is not cleaned properly. Discuss your plans about tattoos and piercings with your transplant team. Alcohol Drinking alcohol can harm the liver. Alcohol is broken down in your liver and can damage liver cells. Drinking alcohol is discouraged. Please discuss specific questions with your liver team. 70 PEDIATRIC LIVER CARE CENTER

77 Sexual activity We recommend that sexually active teens or young adults use birth control. Condoms help prevent pregnancy and sexually transmitted infections. Because of immunosuppression medicines, there is an increased risk of getting infections that may be more difficult to treat. Some examples of sexually transmitted infections include: Chlamydia Gonorrhea Herpes Human papilloma virus (HPV) Genital warts Pelvic inflammatory disease (PID) Syphilis HIV/AIDS Trichomonas Some forms of hepatitis The risk of infections is higher with an increased number of sexual partners. Birth Control Discuss birth control options with your transplant team who can recommend approved options. Always review the use of hormonal birth control (oral pills, Nuvaring, shots or intrauterine devices), with your transplant team before starting them. Pregnancy Fertility after transplant may return quickly for both men and women. We strongly encourage you to discuss your pregnancy plans with your transplant team. Certain medicines used after transplant can cause birth defects. There may be other medicines available to use during pregnancy. Please tell your transplant team right away if you become pregnant so your medicines can be reviewed and changed if needed. 71

78 How Can Families Help? Help your child have a part in decision-making when appropriate. Include your teen in discussion and decisions about transplant. Encourage your child to ask questions, express fears and feelings about how transplant can affect his/her life. Remind your child that the love and support of family and friends can help him or her get through tough times. Screen television programs that could worry your child, and pay attention to the use of computer games, movies and the Internet. Use encouragement and consequences when poor decisions are made. Help your child select appropriate extracurricular activities and limit overscheduling. Make your child aware of the harmful effects of drugs and alcohol before experimentation begins. 72 PEDIATRIC LIVER CARE CENTER

79 Self-Management We know that as teens are encouraged to take responsibility in their care, they might not always make the best decisions about their care post-transplant. It is important for you and our team to help your young adult develop emotionally healthy ways of living. People who are emotionally healthy are in control of their behavior and feelings. This can help them trust, open up and talk more to parents and the transplant team. This can also help the teens follow their family s and transplant team s advice. For Teens or Young Adults Reading this Section Taking care of your transplanted liver is a lifelong commitment. We think that you are the most important caretaker of your new liver. For the best outcomes, we expect the following: Take medicines as prescribed Know why you are taking the prescribed medicines Do not stop medicines unless told to by your liver transplant team Call with any new medicines prescribed by other physicians Stay in contact with your transplant team (at least every three months) Come to all appointments in the transplant clinic as instructed Get blood work as instructed Follow the healthy living guidelines We realize this may be overwhelming at times. We rely on you to talk to us about your concerns or obstacles of managing your care. We have resources available to help you meet these expectations. Ongoing problems with meeting these needs could lead to termination of medical care. RISKS Not following your transplant team s recommendations could lead to liver rejection and/or graft loss. Failure to get labs could result in late diagnosis of liver problems. Delayed treatment could lead to trouble in treating rejection and/or graft loss. We recommend labs at least every 3 months Annual Appointments: We are required to see each patient within 3 months of their transplant date each year. Failure to follow the recommended lab and clinic schedule could lead to denial of prescription refills and termination of medical care. ADHERENCE TEAM The Adherence Program helps children and teens who have a chronic illness learn to take medicines or other treatments for a long period of time. Because this can be hard, you or your child may need additional help to manage their medical treatment. Our Adherence Team can provide this help. TRANSITION PLANNING It is our goal that by the age of 25 your child becomes independent in managing their chronic illness. We will work with you and your child to develop the skills required to achieve self management. When the time is right, we will help you connect with an adult transplant program close to home. 73

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