Kidney Transplant Family Handbook #1742

Transcription

1 Kidney Transplant Family Handbook #1742 (2017) The Emily Center, Phoenix Children s Hospital 1

2 Kidney Transplant Family Handbook Contents Page Introduction 3 1. I can tell you why my child is having a kidney transplant 4 2. I can tell you what medical tests my child is getting, and what they are for 5 3. I can tell you what to expect before surgery 6 4. I can tell you what happens in surgery 8 5. I can tell you what happens after surgery 9 6. I can tell you how to comfort my child I can tell you our plan for when our family is feeling stressed I can tell you what rejection is and what the symptoms are I can tell you what is done to prevent rejection I can tell you what infection is and what the symptoms are I can tell you what is done to prevent infection I can tell you why cleaning my hands is important I can tell you about the medicines my child needs to take I can tell you why my child has to take these medicines I can tell you what side effects of medicines to look for and what to do 29 if I see them 16. I can tell you about my child s medication I can tell you my child s fluid and diet plan I can tell you what my child is able to do I can tell you the phone number of my child s doctor and when I 39 would call 20. I can tell you about my child s follow up appointments 40 2 (2017) The Emily Center, Phoenix Children s Hospital

3 Introduction When a child is diagnosed with a serious condition, parents often feel stress and loss of control because they do not understand everything that is happening. However, once they learn about the illness and master home care skills, parents get their sense of control back. Perhaps you, too, are feeling stressed and overwhelmed because you need to learn about your child s kidney transplant. This information may seem like too much to handle right now, but do not give up. Like other families, you will also be able to take care of your child. We are here to help. First, understand there is nothing you or your child did that caused your child s kidney problems. In the hospital, we will explain the basics about your child s kidney transplant and show you how to safely care for your child at home. The Journey Board shows you all the topics to discuss. Your child s caregivers will need to be at the hospital to learn the basics to care for your child. We will help you become comfortable and confident in your ability to take care of your child after your child s kidney transplant. A kidney transplant is a treatment option, not a cure. In caring for your child s new kidney, your child will need to follow many precautions, restrictions, take daily medications, and have frequent follow-up visits. (2017) The Emily Center, Phoenix Children s Hospital 3

4 1. I can tell you why my child is having a kidney transplant What is a kidney transplant? Kidney transplantation is when a person gets a healthy kidney form someone who is alive (a living donor) or dead (a deceased donor). A kidney transplant is an operation that provides your child with a healthy kidney from another person. A kidney transplant is recommended for children whose kidneys are not working well and have kidney failure. When kidney function gets to less than 20% of normal, it is called kidney failure. Kidney transplant is the best long-term choice for children who have kidney failure. Having a kidney transplant has its risks and benefits. Kidneys do two main things: filter waste products balance body fluids A child may need a kidney transplant when the kidneys are failing to remove the waste products that are building up in the blood and are not able to balance the salts and fluids in the body. If your child has kidney failure your child s nephrologist will consider referring your child to the kidney transplant team. The team will look at your child s medical history and evaluate whether your child is ready for a kidney transplant. The consult and evaluation will include education from the transplant team about the transplant process, blood and diagnostic testing, a nutritional assessment, a psychosocial assessment and a surgical visit with the transplant surgeon. The meeting with the transplant team will help identify resources and readiness for post-transplant care. This may include identifying your family s support system, financial resources, ability to come to follow-up appointments, and willingness to make the required lifestyle changes. Now that you ve read this: r Tell your nurse or doctor why your child needs a kidney transplant. (Check when done.) r Tell your nurse or doctor what the medical terms mean. (Check when done.) 4 (2017) The Emily Center, Phoenix Children s Hospital

5 2. I can tell you what medical tests my child is getting, and what they are for What are the blood tests that my child needs? Your child will need blood drawn to test for the following: labs specific to the kidney, history of infectious disease (this will show if your child has been exposed to different infections and which communicable diseases your child is immune to), panel reactive antibodies, and tissue typing to check for human leukocyte antigens (HLA). These antigens or proteins are found on cells in the body and are inherited from our parents. This test will also be compared to the markers from the donor kidney. The panel reactive antibody levels can show if your child has a higher risk of rejection. These antibodies may make it harder to find a matching donor. What are the other tests that my child needs? Your child will need an electrocardiogram (ECG). This test shows the rate and regularity of your child s heartbeats. Your child will need a chest x-ray. This test looks at your child s lungs. Your child may need an echocardiogram (ECHO). An ECHO measures how well your child s heart is working. Your child may need a computer tomography (CT) angiogram test. This test looks at your child s blood flow of the blood vessels in the abdomen. For more information, ask your child s doctor or nurse for these handouts: Echocardiogram (ECHO) #513 Electrocardiogram (ECG or EKG) #511 Computer Tomography scan (CT Scan) #93 Now that you ve read this: r Tell your nurse or doctor the name of the tests, how the tests are done, and what the tests are looking for. (Check when done.) r Tell your nurse or doctor the meaning of the results of your child s tests. (Check when done.) (2017) The Emily Center, Phoenix Children s Hospital 5

6 3. I can tell you what to expect before surgery Where does the new kidney come from? Kidneys can come from a living donor or a deceased donor. A living donor is a family member or a friend who chooses to give your child one of his or her kidneys. The donor must be over 18 years old. The donor is tested and must be healthy enough to donate a kidney to your child. A deceased donor is someone who has suddenly died and whose family has donated his or her organs for transplantation. If a living donor is identified and approved by the donor team, the surgery is scheduled at time that is good for your child and the donor. If there is no living donor available, your child is placed on a waiting list. What is the kidney transplant waiting list? If your child is a candidate for a kidney transplant, the transplant team will decide when your child is added to the wait list. Your child will only go on the transplant waiting list if the transplant team agrees that it is the best option for your child and you agree for your child to have the transplant. Your child s information will be placed on the national transplant waiting list. The waiting list includes details about your child, such as: blood group, panel reactive antibodies, tissue typing for human leukocyte antigens (HLA), weight and height. Your child will be given a listing status. This status is based on your child s current medical condition. Your child s listing status can change depending on how well your child is doing medically. In the United States, the United Network for Organ Sharing (UNOS) manages the transplant waiting list. How long will my child wait for a kidney transplant? There is no way to know how long your child will wait for a donor kidney. The wait can be anxious and emotional. It is important for you to continue to find balance and a sense of normalcy for yourself, your child, and the rest of your family. 6 (2017) The Emily Center, Phoenix Children s Hospital

7 What should we do while we wait for a kidney transplant for my child? Transplants can happen at any time, day or night. It is extremely important that the transplant team has all your contact information so they can reach you. Make sure they have your current phone numbers, including home, cell, work, and school. If you have a cell phone, keep it charged and with you at all times so that you can be reached 24 hours a day. You will need to be ready to leave your home as soon as possible when the transplant team tells you an organ is available. Make sure you plan well in advance, including: having a babysitter or child care for any other children. making sure you have transportation available organizing how to tell other family members, such as telling one person who can then tell others packing a bag for the hospital stay ahead of time. Make sure to include: toiletries, pajamas, and some of your child s personal items (such as a favorite blanket, stuffed animal, pictures that your child likes). If you need to travel while you are waiting on the transplant list, make sure to notify the transplant team before you go. It is important for your child to stay healthy while waiting for the kidney transplant. Now that you ve read this: r Tell your nurse or doctor where your new kidney will come from. (Check when done.) r Tell your nurse or doctor what the kidney transplant list is. (Check when done.) r Tell your nurse or doctor how the transplant team will contact you about a kidney for your child. (Check when done.) r Tell your nurse or doctor what you need to do while you are waiting for a new kidney. (Check when done.) (2017) The Emily Center, Phoenix Children s Hospital 7

8 4. I can tell you what happens in surgery When a kidney is available for your child, a blood test called a cross match will need to be done. A cross match is done by mixing your child s blood and the blood cells from the potential donor together. This looks for antibodies in your child that will fight against and destroy the new kidney. If the cross match is negative, this means your child does not have antibodies against the new kidney and your child can receive that kidney. If the cross match is positive, your child has antibodies against the donor and should not get that kidney. If this happens, the surgery will be called off. This can happen when you and your child are already in the hospital preparing for the surgery. This is called a dry run. If this happens, your child will stay on the waiting list. This can be very disappointing for you and your child. Your child will not be able to eat or drink after a certain time. Your child s nurses will tell you what time your child needs to stop eating and drinking. Your child will need to have an IV placed. Your child will get IV fluids through this IV to keep hydrated. What happens when my child goes into surgery? Once the donor kidney is ready, your child will go to surgery. When your child enters the operating room, your child will lie on a special operating room bed. The nurses will attach EKG stickers to your child s body. Your child will have a pulse oximeter probe (pulse ox) and a blood pressure cuff on an arm. These devices will help the surgery team monitor your child closely during surgery. Your child will get general anesthesia and will be asleep during surgery. The doctors will put in a breathing tube to help your child breath. Your child will also have a urine catheter (foley) placed during surgery. A foley drains the urine from your child s bladder. Your child will not feel any pain during surgery. The donor kidney will be put into your child s lower abdomen. In young children the cut (incision) is up and down in the middle of the abdomen. It is usually 6 to 10 inches long. In older children, the incision is diagonal and on the lower right or left side of the abdomen. The surgery takes about 3 to 5 hours. An artery and vein from your child will be attached to the new kidney s artery and vein. The kidney s ureter will be attached to your child s bladder so urine can flow. Sometimes the surgeon will take out your child s kidney before putting in the donor kidney. Sometimes complications happen, and this can make the surgery longer. 8 (2017) The Emily Center, Phoenix Children s Hospital

9 The surgeon may leave your child s kidneys he or she was born with inside his or her body during transplant surgery. The kidneys will shrink up and usually do not cause any problems with staying in your child s body. This means your child may have more than 2 kidneys, but only 1 will be working. However, your child may have a native nephrectomy. This is when your child s kidneys he or she was born with are removed. This may happen before the transplant or during the transplant surgery. Once the doctors determine the new kidney is working correctly, they will move your child to the Pediatric Intensive Care Unit (PICU) for recovery. Where do I wait during my child s surgery? You and your family members will be shown where to wait while your child is in surgery. Someone should stay in this area the entire time your child is in surgery. If possible, the doctor or a nurse will update you during your child s surgery. Now that you ve read this: r Tell your nurse or doctor what surgery your child is having. (Check when done.) r Tell your nurse or doctor what a dry run is and what it means for your child. (Check when done.) r Tell your nurse or doctor what will happen in the operating room. (Check when done.) r Tell your nurse or doctor how long the surgery your child is having may take. (Check when done.) 5. I can tell you what happens after surgery What happens when my child is done with surgery? Your child will be taken to the Pediatric Intensive Care Unit (PICU) after surgery. When your child first arrives, it usually takes an hour or two to settle in. Your child s nurse or doctor will tell you when you can visit. (2017) The Emily Center, Phoenix Children s Hospital 9

10 Your child will be attached to many monitors and tubes. It might be overwhelming at first. Your child s nurse or doctor will explain these monitors and tubes to you. Make sure to ask any questions you might have. Your child will be in the PICU for 1 to 2 days and then will be moved to a different floor once your child is stable. Monitors: Your child s blood pressure, heart rate, heart rhythm, and blood oxygen levels will be monitored closely. Devices and tubes: Your child may have a breathing tube (endotracheal tube) in place to help your child breathe. Your child may also be on a breathing machine (ventilator) until your child is fully awake. Your child will be sedated while on the ventilator, allowing your child to be comfortable and relaxed. When your child is breathing on their own, the tube will be taken out. Your child may have at least one central line in place for intravenous (IV) treatments. The doctors usually put it in your child s neck or chest. These lines help give your child fluids, medications, and nutrition that your child needs. Your child will have a bladder catheter (foley) in place to drain the urine from the bladder. It usually stays in place for several days. If it makes your child uncomfortable, the nurse can give your child medicine. It is normal for your child to have blood in the urine for a few days after surgery. After the tube is removed, your child will need to urinate in a hat to collect and measure the urine. Children wearing diapers will have all the wet diapers weighed before they are thrown away. Your child will need to urinate often to empty the bladder. Your child s incision: The new kidney will be placed in your child s lower abdomen. In younger patients, the cut (incision) is up and down in the middle of the abdomen. It is usually 6 to 10 inches long. In older patients, the incision is diagonal and on the lower right or left side of the abdomen. Your child may have a drain bulb near the incision. This will help take fluid away from the kidney transplant. 10 (2017) The Emily Center, Phoenix Children s Hospital

11 What will I see as my child begins to heal from surgery? As your child recovers from surgery, the medical team will begin to remove the lines and monitor. Your child will need to get out of bed and walk to help prevent infections, pneumonia, blood clots, and hard stool (constipation). To try to prevent pneumonia, your child will need to cough and deep breathe. Your child will be shown how to fill his or her lungs with air using a special tool called an incentive spirometer. Sometimes it helps if your child hugs a pillow against his or her chest when moving in and out of bed and when coughing. Your child will be given enough medicine to help with pain after surgery. Some children begin to feel better right away. Other children may take longer to heal. There is always a chance for problems after surgery (complications). Complications can happen soon after surgery, or after your child leaves the hospital. Your doctors and nurses watch for problems and treat them. We cannot say how long your child will stay in the hospital. Each child is different. If your child is doing well, he or she may go home in one to two weeks. If there are complications, your child may need to stay in the hospital longer. Visitors: Parents can visit at any time. One parent may spend the night with the child. Friends and family may visit you from 8:00 AM to 8:00 PM each day. If the room is too crowded for the child to rest or be cared for, the nurse may ask some visitors to leave. During the winter, the hospital does not allow visitors under 12 years old. The rules will be posted in the hospital and on the website ( Visitors who think they have a cold or flu are asked to stay away until they are well. Cut flowers and plants potted in soil cannot be in the room. The hospital does not allow latex balloons. Now that you ve read this: r Tell your nurse or doctor what your child will look like after the surgery. (Check when done.) r Tell your nurse or doctor how your child will be monitored after surgery. (Check when done.) (2017) The Emily Center, Phoenix Children s Hospital 11

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

13 Now that you ve read this: r Tell your nurse or doctor how you know when your child is in pain. (Check when done.) r Tell your nurse or doctor the best ways to comfort your child. (Check when done.) r Tell your nurse or doctor the medicines that help your child with pain. (Check when done.) r Tell your nurse or doctor other ways to help your child when in pain. (Check when done.) 7. I can tell you our plan for when our family is feeling stressed How does my child s kidney transplant affect my child and our family? The physical recovery of your child after a kidney transplant is only part of the recovery. A kidney transplant can also be a very emotional and stressful time for you, your child, and the rest of your family. A kidney transplant is not a cure. It allows your child to feel better and take part of normal day-to-day activities. This also means lifelong medicine, close medical follow-up, and sometimes invasive procedures for your child. What might I expect to see in my child emotionally? After surgery, your child might show signs of: depression low self-esteem self-image issues attention disorders By being aware of the warning signs and knowing that this might happen to your child, you can reduce the impact on your child s life. The transplant team is prepared to support you and your child. They can help with emotional concerns and needs. The transplant team can help you and your family manage your concerns with the help of psychologists, psychiatrists, social workers, and child life specialists. (2017) The Emily Center, Phoenix Children s Hospital 13

14 What might you see in yourself or other family members? Because this is a life-changing event, it affects all of your family members. Stress affects everyone differently. You might notice that a brother or sister might start acting different. They might be trying to get attention from you with bad behaviors. They might start showing different behaviors, such as crying more frequently, getting into trouble at school, or talking back to you. With your spouse, you might notice that you are fighting more often. Or you might notice that your spouse is very quiet. With yourself, you might notice that you get angry easier. Or, it may be hard for you to talk about your feelings. If you notice any of these changes in you or your family members, make sure to talk to a social worker. The transplant coordinator and the social worker will work closely to help support you and your family. You can talk to your social worker about any questions or concerns before and after your child s kidney transplant. Your social worker will listen to your concerns and provide you with different ways to help you. They can help with money issues, support groups, and refer you to organizations in your community that can help. The social worker s main job is to make sure you and your family has all the information on how to make the kidney transplant work. For more information, ask your child s doctor or nurse for these handouts: Help Us Know Your Child #1019 How to Help Brothers and Sisters of a Sick Child #125 What Does That Mean? Medical Terms You May Hear or See #563 Who s Who on the Hospital Health Care Team #254 You re on the Health Care Team #167 Now that you ve read this: r Tell your nurse or doctor what your family s concerns are. (Check when done.) r Tell your nurse or doctor how this diagnosis makes your child feel about himself or herself. (Check when done.) 14 (2017) The Emily Center, Phoenix Children s Hospital

15 r Tell your nurse or doctor how having a kidney transplant will impact your entire family. (Check when done.) r Tell your nurse or doctor your family s plan for coping with stressful situations. (Check when done.) 8. I can tell you what rejection is and what the symptoms are What is rejection? Rejection is when the body reacts to something it thinks does not belong there. Your child s immune system works to protect the body from attacks by foreign things, such as germs and cancer cells. These germs can be a bacteria, virus, or fungus. Your child s immune system will try to reject your child s new kidney. The body can recognize the kidney is different from the rest of your child s body. There are two main types of rejection. Acute cellular rejection (ACR) is caused by the white blood cells in your child s body fighting the cells in your child s new kidney. Antibody-mediated rejection (AMR) is caused by proteins called antibodies these recognize your child s kidney as foreign. Your child s transplant team will discuss these with you. Your child will need to take medicines called immunosuppressants for the rest of your child s life to help prevent rejection of the kidney. Sometimes, rejection may happen anyway. Early diagnosis and treatment of rejection is very important. Even if your child s body starts to reject the new kidney, it does not mean your child will lose the kidney. When can rejection happen? Rejection can happen at any time. It is most common during the first year after transplant. It can happen if your child misses medications, so it is very important that you make sure your child takes the medicine exactly as the doctor prescribes. Most of the time, rejection can be treated with high doses of steroids and adjusting your child s immunosuppressants. As long as your child takes the immunosuppressant medications as instructed, rejection is less likely to happen. (2017) The Emily Center, Phoenix Children s Hospital 15

16 How can the transplant team know that my child is having rejection? Sometimes it can be hard to tell if your child is having rejection. The transplant team will closely monitor your child. They will do certain tests on your child to see if your child is having rejection. Some of the tests that your child will have for rejection are blood tests and a kidney biopsy. Your child will need blood tests at every clinic visit. Sometimes your child may need more frequent blood tests if the creatinine level is elevated. A kidney biopsy is done in Interventional Radiology (IR). It is the most effective test for diagnosing rejection. A small sample of your child s kidney tissue is looked at under a microscope for signs of rejection. Your child will only have a kidney biopsy if there is concern for rejection. Different things can affect your child s risk for rejection. The transplant team will talk to you about your child s risks. The risk for rejection can change over time. What happens during a kidney biopsy? 1. Your child will go to Interventional Radiology for the procedure. 2. While your child is asleep, the doctor uses a needle to remove small pieces of the kidney. It is done on the left side or right side of the lower abdomen, depending on which side has the transplanted kidney. Removing these pieces of the kidney usually does not damage your child s kidney. 3. The doctor removes the needle after all the biopsies are taken and applies pressure to the area to prevent bleeding. The doctor then places a small bandage over the area. 4. Your child goes to a recovery area for 4-6 hours to recover from this procedure and to make sure the site does not bleed. Your child must stay in bed during this period of time and will be made comfortable. 5. The biopsies are sent to a laboratory to see if there are any signs of rejection. Your child s doctor will discuss the procedure and possible risks before your child s kidney biopsy. You will be asked to sign a consent form for this procedure. Make sure to ask the doctor about any questions or concerns you have. 16 (2017) The Emily Center, Phoenix Children s Hospital

17 What are signs of rejection? Rejection is usually noticed in the results of your child s blood tests before your child shows any signs. However, it is important for you to know these signs. Signs of rejection include: pain over the transplanted kidney increased creatinine level fever decreased urine output If you notice any of these symptoms in your child, contact the transplant team as soon as possible. Now that you ve read this: r Tell your nurse or doctor what rejection is. (Check when done.) r Tell your nurse or doctor the signs of rejection. (Check when done.) r Tell your nurse or doctor how your child will be tested for rejection. (Check when done.) r Tell your nurse or doctor what you would do if you see any sign of rejection. (Check when done.) 9. I can tell you what is done to help prevent rejection The immunosuppressant medicines your child is prescribed after a kidney transplant are very important. These medications keep the immune system working at a lower level. This helps your child s body accept the new kidney and not reject it. However, it also increases your child s risk for infection. Your child needs to take these medicines every day to help prevent rejection. If your child stops taking these medications, the new kidney will fail. You must give your child s medicine exactly as ordered by the kidney transplant team. Do not miss any doses. (2017) The Emily Center, Phoenix Children s Hospital 17

18 Make sure to take your child to all clinic appointments, follow-up tests, and blood tests that the doctors ordered. Check with the kidney transplant team before giving your child any over-thecounter medicines, including herbal or natural medicines. These medicines can interfere with immunosuppressant medications. Check with the kidney transplant team before giving your child medications prescribed by other doctors. Call the transplant team with any concerns or changes in your child s health. Now that you ve read this: r Tell your nurse or doctor what you can do to help prevent rejection. (Check when done.) 10. I can tell you what infection is and what the symptoms are Your child is at higher risk for infections. Infections are caused by viruses, bacteria, or fungus. The risk for infection is highest in the first 6 months after transplant but can happen at any time. Your child will get normal childhood infections such as a runny nose, cough, ear infection, vomiting, and diarrhea. Usually, you can take care of these types of infections as you would with any other child who has not had a kidney transplant. Some infections are more serious in a child who has had a kidney transplant and is taking immunosuppressant medications. Your child s transplant team will teach you about these infections after your child s surgery. The doctors will check your child s blood for these infections a few times a year. What are some common bacterial infections that could affect my child? Common bacterial infections on the skin are usually caused by staphylococcus aureus or methicillin-resistant staphylococcus aureus (MRSA). Common bacterial infections in the gastrointestinal (GI) tract can be caused by vancomycin-resistant enterococcus (VRE), C Diff Colitis (C Diff), or salmonella (which is found in raw eggs and raw chicken). Common bacterial infections in the lungs can be caused by mycobacterium tuberculosis or pseudomonas. 18 (2017) The Emily Center, Phoenix Children s Hospital

19 What are some common viral infections that could affect my child? Some kinds of viral infections may put children with a kidney transplant at a higher risk of rejection. If your child has one of these viruses, your child will be monitored very closely by the transplant team. Treatment for these viruses usually depends on the severity of the symptoms. Chickenpox: Children who have had a kidney transplant are at risk for getting chickenpox (varicella) if they have not had it before or if they have not had the vaccine. A blood test is done before a child has a kidney transplant to see if the child is protected against chickenpox. You and your family should avoid contact with people who currently have the chickenpox or shingles. Shingles are a painful rash that is also caused by the varicella virus. It can cause the chickenpox in a young child. Let the transplant team know if your child has been exposed to the chickenpox or shingles. If needed, the transplant team can help your child get varicella antibodies to help prevent getting chickenpox. This medicine needs to be given within 4 days of exposure. Even if your child gets this medicine, your child may still get the virus. Chickenpox can show up between 10 and 21 days after exposure. Herpes simplex virus (HSV) types 1 and 2: HSV is a family of viruses that cause blisters and sores in different parts of the body: HSV type 1 (HSV-1) usually causes cold sores in the mouth or on or around the lips. It can be passed from one person to another through saliva or sores on the skin of an infected person, such as kissing. HSV type 2 (HSV-2) usually causes genital sores. It can be passed during sexual contact with an infected person. Children who have had a kidney transplant can get either type of HSV, but cold sores from HSV-1 are more common. The sores can be painful and filled with pus. It can also cause symptoms such as fatigue, fever, or body aches. (2017) The Emily Center, Phoenix Children s Hospital 19

20 The treatment for HSV is to relieve the symptoms. There is no cure for HSV. If children have a lot of pain from HSV and it affects their eating and drinking, they might have to be admitted to the hospital. Cytomegalovirus (CMV): CMV is a common virus that between 50 and 90 percent of adults have been infected by it. Usually, CMV does not cause any symptoms in healthy people. It can stay in the body for a very long time after the first infection. The risk of your child getting CMV is highest in the first 3 months after transplant. It can affect the eyes, lungs, stomach, and esophagus. The treatment for CMV is either an IV medicine called ganciclovir (or Cytovene ) or a medicine given by mouth, called valcyte (Valganciclovir ). Epstein-Barr virus (EBV): EBV can cause a disease known as post-transplant lymphoproliferative disorder (PTLD). Symptoms may start with feeling tired, weight loss, and fever. Another sign is swollen lymph nodes. EBV can also infect the intestines, causing belly pain, changes in bowels, or bloody stools. To be sure it is PTLD, a child with the symptoms may also have a: CT scan to look at swollen lymph node or a mass. Biopsy of the swollen node or mass Your child may need to be admitted into the hospital to treat EBV. Your child might need and IV and be given medicine called ganciclovir (or Cytovene). Your child s doses of immunosuppressive medicines might be lowered. What are some common fungal infections that could affect my child? Fungal infections happen less often because we give the medicine fluconazole to prevent them after transplant. Pneumocystis carinii penumonia (PCP): PCP is a yeast-like fungal infection. Since immunosuppressive medicines can put children at greater risk for PCP, they are given an antibiotic (Bactrim or sulfamethoxazole/trimethoprim) that helps to prevent it. 20 (2017) The Emily Center, Phoenix Children s Hospital

21 Candida: Candida is a yeast that can cause infections. When it infects the mouth or throat it is called thrush. Thrush causes white, raw areas, tenderness or pain in the mouth or throat, a white film on the tongue, and trouble swallowing. Candida can also infect the tube that goes from the throat to the stomach (the esophagus). It is treated with medicine by mouth or IV. What are signs of infection? Infections can be caused by viruses, bacteria, or fungus. The signs and symptoms of infection include: Fever greater than 100 degrees Chills Irritability Tired or fatigued Loss of appetite Sick to the stomach or throwing up Loose stools Stomach pain Cough Sore throat Stuffy or runny nose Shortness of breath Dizziness or light-headedness The transplant incision is swollen, tender, open, or draining Headache Painful urination Blood in urine What if my child is exposed to chicken pox, measles, or mumps? If your child has close contact with someone with chicken pox, measles, or mumps, call the transplant team right away. (2017) The Emily Center, Phoenix Children s Hospital 21

22 Now that you ve read this: r Tell your nurse or doctor what an infection is. (Check when done.) r Tell your nurse or doctor the signs your child has an infection and what to do if you see any. (Check when done.) r Tell your nurse or doctor what to do if my child is exposed to chicken pox, measles, or mumps. (Check when done.) 11. I can tell you what is done to prevent infection What can I do to help prevent infections? It is important to try to avoid infections when possible. There are several things you and your family can do to try to reduce the risk of infections. One of the best things you can do to prevent infection is to clean your hands well and often. This keeps germs on your hands from infecting you and others. It should be done for seconds with soap and water or use hand sanitizer. Handwashing should be done often, especially after using the toilet, after changing a diaper, before and after cooking or preparing food, snacks, or bottles, before eating meals and snacks, and after petting animals. For the first 6 weeks after transplant, your child should stay away from crowded places, such as malls, movie theaters, and classrooms. Your child should wear a face mask when in public for the first 4 weeks after transplant. Your child needs to stay away from people who are sick. Ask family and friends to stay away when they have fevers, sore throats, coughs, or aches. Make sure family members are covering their mouths when coughing or sneezing and then washing their hands right away. 22 (2017) The Emily Center, Phoenix Children s Hospital

23 Do not let your child share dishes, cups, glasses, silverware, or toothbrushes with other people or family members. Your child should not clean cat litter boxes, bird cages, or fish tanks. If contact with a pet must happen, make sure your child wears gloves and a mask. Dietary precautions need to be followed to reduce the risk of infection from food: Your child should not eat raw or partially cooked meat or seafood. Wash fruits and vegetables thoroughly. Do not let your child eat unpasteurized milk or some fresh, soft cheeses such as brie or blue cheese. Make sure to avoid cross-contamination between raw and cooked foods. Drinking water should be filtered, bottled, or boiled for 10 minutes. Brush and floss your child s teeth two times each day. Your child needs to see the dentist regularly. Make sure the dentist knows your child had a kidney transplant and is on immunosuppressants. Call your transplant team before any dental visits. Your child needs to avoid water that is not clean, such as lakes or ponds. Make sure pools and hot tubs are clean before your child goes in them. Immunizations help to prevent infections. For six months after transplant, your child should not have any immunizations. Six months after your child s transplant, your child should have a flu shot. Your child will then need to get a flu shot once every year. Your child should not receive any live vaccines including MMR, Varicella, and Nasal Flumist. These can cause serious infections in a child after transplant. Six months after your child s transplant, your child can have non-live vaccines. For more information, ask your child s doctor or nurse for these handouts: Good Handwashing #100 How to Avoid Infections if You are At Risk #61 Ways to Prevent Infection After Surgery #1088 Now that you ve read this: r Tell your nurse or doctor what you can do to prevent an infection. (Check when done.) r Tell your nurse or doctor the medications that will be given to prevent infections. (Check when done.) (2017) The Emily Center, Phoenix Children s Hospital 23

24 12. I can tell you why cleaning my hands is important One of the best things you can do to prevent infection is to clean your hands well and often. This keeps germs on your hands from infecting you and others. Most people catch colds by rubbing their nose or eyes when there are germs on their hands. If your hands are not visibly dirty, you can use alcohol-based hand rub to clean them. You and your child should clean your hands: before and after cooking, or preparing food, snacks, or bottles before eating meals and snacks after using the toilet or helping a child use the toilet after diapering a child after you touch things that have body fluids or wastes on them (like blood, urine, stool, saliva, or fluids that come from the nose, eyes, or sores) before and after giving medicine, changing bandages, or doing another medical procedure after playing with animals after cleaning up after animals after caring for a sick child or animal after coughing, sneezing, or wiping your nose Whenever your hands are visibly dirty, it is important to wash your hands with soap and water instead of using hand sanitizer. Teach your child how to clean his or her hands. Remind young children to clean their hands. Check your child s hands before meals to make sure they have been cleaned well. For more information on handwashing, ask your child s doctor or nurse for the handout, Good Handwashing #100. Now that you ve read this: r Tell your nurse or doctor why cleaning your hands is so important. (Check when done.) r Tell your nurse or doctor when to clean your hands. (Check when done.) r Tell your nurse or doctor how you clean your hands and your child s hands. (Check when done.) 24 (2017) The Emily Center, Phoenix Children s Hospital

25 13. I can tell you about the medicines my child needs to take It is very important for you to follow your child s medicine instructions. Forgetting to take or skipping medicines can lead to rejection or decreased life of your child s kidney. You might feel overwhelmed with your child s new medicines, but it will get easier for you. The transplant team s goal is to make sure you know all about your child s new medicine before you leave the hospital. As your child gets older, the goal is to have your child be more in charge of taking the medicines. What are the different types of medicines my child might need? Most kidney transplant patients take 3 types of medicines: immunosuppressants anti-infection medicines other medicines to help control side effects Immunosuppressants: Immunosuppressants (also known as anti-rejection medicines) help to prevent the body from attacking your child s new kidney. Immunosuppressants work by weakening (suppressing) the immune system. The immune system usually fights infection and anything else in the body that it does not think belongs there. What is an immune system? The immune system is the body s way to protect it from infection and disease. White blood cells and antibodies are part of this system. They identify non-self cells in the body and attack. They attack bacteria, viruses, fungi, and parasites. They also attack a transplanted organ, which causes rejection. The T-cell (T-lymphocyte) is a type of white blood cell that attacks viruses and other infections. It is also the type of cell that attacks the transplanted organ and causes rejection. (2017) The Emily Center, Phoenix Children s Hospital 25

26 The B-cell (B-lymphocyte) is another type of white blood cell that is involved in the immune and rejection process. Its role is to produce antibodies. Medications are used to suppress the response of T-cells and B-cells and control rejection. They are called immunosuppressants. Examples of immunosuppressants include: tacrolimus, sirolimus, cyclosporine, mycophenolate mofetil, and steroids. Immunosuppressants make the immune system not work as well, which decreases the chance of rejection. It also makes the body more at risk of infection and decreases the body s ability to fight infections. Your child s transplant team will closely monitor your child s medicines. The goal of your child s medicines is to reduce the chance of rejection and keep the rest of your child s body healthy. Your child will need immunosuppressants for the rest of your child s life. As your child gets older, your child may need a smaller dose of immunosuppressants. Anti-infection medicines: Your child is at higher risk for getting infections because of the immunosuppresants. Anti-infection medicines help prevent or fight infections to help keep your child healthy. Usually, people only need to take anti-infectants during the first year after transplant. If your child is having rejection, your child might need anti-infectants since they will be taking more immunosuppressants. Other medicines: Your child may need other medicines to help control side effects caused by the transplant medicines or the surgery itself. Side effects include: high blood pressure stomach pains blood clots. If your child is doing well and does not have any side effects, the doctors will likely stop these medicines. 26 (2017) The Emily Center, Phoenix Children s Hospital

27 Usual medicines that your child might take: Prograf (tacrolimus) Prednisone Cellcept (mycophenolate mofetil) Diflucan (fluconazole) Bactrim (sulfamethoxazole/trimethoprim) Cytovene or Valcyte (ganciclovir or valganciclovir) Antacids Can my child take medicine not prescribed by my child s transplant doctor? Do not give any medicine to your child unless your child s transplant doctor ordered it. This includes any over-the-counter medicines, supplements, or herbs. If any other doctor prescribes medicine for your child, check with the transplant team before giving it to your child. What medicines should my child not take? It is very important for your child NOT to take: ibuprofen (Motrin, Advil, or Aleve ) aspirin medicine for loose stools or diarrhea cold medicine, like nose sprays or decongestants (Sudafed ) Over-the-counter medications your child can take. If your child has: a cough: your child can take Robitussin or Robitussin DM a runny nose: your child can take diphenhydramine (Benadryl ) or allergy medicine (Claritin ) a headache, fever or body aches: your child can take acetaminophen (Tylenol ) a sore throat: your child can use a chloraseptic spray (2017) The Emily Center, Phoenix Children s Hospital 27

28 For more information, ask your child s doctor or nurse for these handouts: Medicines to Take #337 Medicine List #786 Measure Medicine in a 1 ml Syringe #721 1 ml Measure Medicine in a 3 ml Syringe #721 3 ml Measure Medicine in a 5 ml Syringe #721 5 ml Measure Medicine in a 10 ml Syringe # ml Always Have Medicine #909 Help Your Child Take Medicine #1116 Now that you ve read this: r Tell your nurse or doctor the names of the medicines you will give your child at home. (Check when done.) r Tell your nurse or doctor when and how much of each medicine to give. (Check when done.) r Show your nurse or doctor how you would give your child medicine. (Check when done.) r Tell your nurse or doctor if there are medicines or food my child should not have while taking medicine. (Check when done.) r Tell your nurse or doctor what over-the-counter medicines your child can have. (Check when done.) 14. I can tell you why my child has to take these medicines: Prograf (tacrolimus): This medicine keeps your child s body from rejecting your child s new kidney. It is an immunosuppressant. Prednisone: This medicine keeps your child s body from rejecting your child s new kidney. It is a steroid and an immunosuppressant. CellCept (mycophenolate mofetil): This medicine keeps your child s body from rejecting your child s new kidney. It is an immunosuppressant. Diflucan (fluconazole): This medicine helps treat or prevent an infection caused by a fungus, such as yeast and Valley Fever. It is an antifungal. 28 (2017) The Emily Center, Phoenix Children s Hospital

29 Bactrim (sulfamethoxazole/trimethoprim): This medicine helps treat or prevent certain lung infections (pneumonia) and urinary tract infections. It is an antibiotic. Cytovene or Valcyte (ganciclovir or valganciclovir): This medicine helps prevent CMV (cytomegalovirus) disease. Ganciclovir may keep your child from getting CMV or make the illness milder. Valganciclovir is the pill form of ganciclovir. These medicines are anti-virals. Antacids (Pepcid, Zantac, ranitidine, Prilosec, Prevacid, Omeprazole ): These medicines help prevent an upset stomach, ulcers, and heartburn. For more information, ask your child s doctor or nurse for these handouts: Medicines to Take #337 Medicine List #786 Now that you ve read this: r Tell your nurse or doctor why each medicine is given. (Check when done.) 15. I can tell you what side effects of medicines to look for and what to do if I see them Prograf (tacrolimus): Headache Shaking that the child cannot stop (tremors) Loose stool (diarrhea) Sick to the stomach (nausea) Hair loss Trouble sleeping Numb hands and feet High blood sugar (diabetes) Increased chance of getting an infection (2017) The Emily Center, Phoenix Children s Hospital 29

30 Prednisone: Hunger Trouble sleeping Sweating Muscle weakness Mood changes Trouble healing Increased risk for infection Pimples Stomach ulcers High blood sugar (diabetes) Changes in eye sight Weak bones if high doses are given for a long time Cellcept (mycophenolate mofetil): Loose stools (diarrhea) Sick to the stomach (nausea) Throwing up (vomiting) Not hungry (loss of appetite) Low white blood cell count Diflucan (fluconazole): Loose Stool (diarrhea) Sick to the stomach (nausea) Throwing up (vomiting) Not hungry (loss of appetite) Rash Headache Dizzy Food may taste different Bactrim (sulfamethoxazole/trimethoprim): Sick to the stomach (nausea) Throwing up (vomiting) Not hungry (loss of appetite) Headache Upset stomach (nausea) Rash Itching 30 (2017) The Emily Center, Phoenix Children s Hospital

31 Cytovene or Valcyte (ganciclovir or valganciclovir): Fever Rash Shaking that the child cannot control (tremors) Confusion Low white blood cell count Antacids (such as Zantac or ranitidine): Hard dry stool (constipation) Loose stool (diarrhea) Sick to the stomach (nausea) Throwing up (vomiting) Side effects of medicines: It is not easy to get used to the new medicines your child needs to take to prevent rejection and infection. Your child needs to take several medicines every day, and they have side effects. Some of these side effects change the way your child looks and the way your child feels about his or her body. Will my child experience every side effect listed? Your child will not get every side effect of every medicine. However, every child gets some side effects. If you know what to expect, you will know what is happening. Talk to your child s transplant team to learn how deal with these side effects. What are the changes you might see? Skin Changes: Your child may get pimples on the face (acne). Wash this area twice a day. Deodorant soap (like Dial ) will clean and help dry the extra oils on the skin. Do not use soap with oil or cream. These can make acne worse. If acne is a problem for your child, talk to the transplant team. Your child may have dry skin. Use a mild soap, like Ivory. Use a bath oil, like Keri. After a bath or shower, put lotion on the skin. Skin problems usually get better when the doses of medicines after transplant are lowered. (2017) The Emily Center, Phoenix Children s Hospital 31