Your Guide to. Kidney Transplants.

Transcription

1 Your Guide to Kidney Transplants

2 If you and your doctor are considering a kidney transplant You are probably wondering what happens next If your kidneys are damaged and other treatments have not been working for you, your doctor may recommend that you have either kidney dialysis or a kidney transplant. It may be important to try to learn as much as you can before you make a decision. By knowing the facts, you may be able to make a more educated decision that you feel comfortable with, now and in the future. This brochure has been developed to answer some of the questions you may have about kidney transplants. You may also want to visit us online at where you can learn more, access patient videos, and download tools and resources that may help you on your journey. You may find it helpful to talk to other patients who have already had a kidney transplant. On page 29 of this brochure there is a partial list of organizations through which you may want to connect with other patients. Don t hesitate to talk to your transplant team about any issues or concerns you may have. They are there to help you every step of the way. The people who may be on your transplant team and their roles are described later in this brochure. You should always discuss your individual symptoms and any questions you may have with your transplant team. The contents of this brochure are not intended for the purpose of disease diagnosis or as a substitute for information that is provided to you by your transplant team. Always consult your transplant team before making any changes to your lifestyle, such as changing your diet or exercise plan, or before changing your medicine routine. 2 3

3 Important facts about your kidneys and their functions Your kidneys have very important roles within your body. They help remove waste, regulate blood pressure, and maintain the body s balance of water. When you have a transplant, the donated kidney is placed into your body and connected to your blood supply and bladder. In most cases, your old kidneys are not removed. What do your kidneys do? Your kidneys are two bean-shaped organs located in the middle of your back, on either side of your spine. Each kidney is about the size of your fist. Your kidneys do some of the most important jobs in your body, such as: Filtering and removing waste Helping control blood pressure Cleaning the blood in your body Keeping the body s balance of water, salt, and acid constant Making hormones that help bone marrow make red blood cells Old kidney An organ that cleans your blood. Its function is taken over by the transplanted kidney since the old kidney was not working well. Inferior vena cava A large vein that carries blood from the lower half of your body to your heart. Aorta A large artery that carries blood from your heart to other parts of your body. Transplanted kidney An organ that cleans your blood that has been transplanted from a living or deceased donor. Ureter Duct that carries urine from your kidney to your bladder. Bladder Sac in your pelvic cavity that stores urine. 4 5

4 What happens when your kidneys are not working the way they should? If something happens to change the way your kidneys work, it is usually because of a condition that has been attacking your kidneys over a period of time. This may lead to chronic kidney disease, a condition that generally affects both kidneys. This might be something you were born with, or it could be a problem that has developed over time. You may not experience any symptoms of kidney disease at first. However, even if you don t have any symptoms, if your kidneys are not working correctly, the body s waste and excess fluids build up. This can cause harm to your body. Some symptoms of kidney disease you may experience include: Edema (fluid buildup in the tissues) A change in urination (frequency or difficulty) Shortness of breath Confusion Tiredness The contents of this brochure are not intended for the purpose of disease diagnosis or as a substitute for information that is provided to you by your transplant team. 6 7

5 Why might you need a kidney transplant? Some conditions that may damage your kidneys and cause chronic kidney disease include: Diabetes High blood pressure Glomerulonephritis (inflammation of the kidneys filtering units) Polycystic kidney disease (cysts that enlarge over time) Kidney stones Cancer Repeated urinary infections Kidney disease may progress to kidney failure if: The disease has not been diagnosed early enough The disease has not been treated early enough The patient has not responded to treatment With kidney failure, your kidneys have usually stopped working, and it is likely that you will require lifelong dialysis or a kidney transplant. Types of kidney transplants In order to have a kidney transplant, you will need a donated kidney. There are two possible kidney transplant procedures that you may want to discuss with your transplant team, so that you can decide together which option may be right for you: Living donor kidney transplant Deceased donor kidney transplant According to the Organ Procurement and Transplantation Network, the national 1-year survival rates for patients who received a kidney transplant from 1997 to 2004 were as high as 94% for patients who received a kidney from a deceased donor, and 98% for those who received a kidney from a living donor. As with all surgical procedures, there is also a risk of complications associated with kidney transplants. Some of the possible complications are listed on page 11. Living donor kidney transplant A living donation is when a living person gives one of his or her kidneys to a waiting recipient. Living donors can be parents, siblings, aunts and uncles, children who are at least 18 years old, and cousins. There is also a possibility that a non-related donor may be found, but this is not as common. A non-related donor could be a spouse or a friend. However, relatives make the most successful donors because their blood and tissues are similar to yours. If a living donor kidney transplant is an option for you, your transplant center may have a list of requirements for the donor, including: Being of a certain age Ability to pass physical and psychological tests Having a compatible blood type with normal kidney and liver function Not everyone who needs a kidney transplant is a candidate for a living donor transplant. In this case, a deceased donor transplant may be an option. Deceased donor kidney transplant Deceased donors are people who have agreed before their death to donate their organs for transplant. If receiving a kidney from a deceased donor is an option for you, you may be put on a waiting list until a compatible kidney becomes available. It is difficult to know how long the wait might be. You may want to talk to your transplant team if you have questions regarding how long the wait might be to find a compatible kidney. National 1-year survival rates for kidney transplant patients according to the Organ Procurement and Transplantation Network, accessed October 7,

6 The List Waiting for a donor organ There is a system in place to help make sure that patients who need a kidney transplant are given priority based on a variety of factors. This is managed by the United Network for Organ Sharing, or UNOS. UNOS coordinates efforts among transplant centers in the country to allocate donated organs for transplants. The UNOS Web site has more information on this system and is available at Your position on the waiting list may depend on: Blood type (O, A, B, or AB) Blood type must be compatible whether receiving a living or a deceased donor organ. If your blood type is: O A B AB Your donor s blood type could be: Tissue type There are six antigens (markers) found in your blood sample. A perfect match occurs when all six antigens match the donor. Antibodies Your immune system may produce antibodies that act specifically against something in the donor s tissues. Crossmatch A test to see if there is anything in your blood that will react against the donor s cells. Time Every time an organ becomes available in your area, a list of patients who might be compatible with that organ is generated. If you are not a perfect match with the donor, the organs are allocated based on the closest match and your length of time on the waiting list. O A or O B or O A, B, AB, or O What are some of the possible complications associated with a transplant? There is always a risk of complications after a kidney transplant. These may include: Infection Rejection of the transplanted kidney Clotting of a blood vessel Bleeding Delayed or no function of the transplanted kidney Psychological and social changes Fever Problems urinating Abdominal bloating If you have any concerns or questions about these complications or anything else to do with your transplant, talk to your transplant team. It may help to stay connected with your transplant coordinator so that you can stay up-to-date on whether a donor may become available for you. If you move or change any of your phone numbers, it would be a good idea to tell the transplant center so that they can reach you right away if a match is found for you. If you are not sure if you are on the waiting list for a kidney, talk to your transplant coordinator

7 Screening before transplant Anyone who needs an organ transplant may have a number of different tests before they receive the transplant. These tests help your transplant team decide if a transplant is right for you. Some or all of the following tests (and possibly more) may be required. It may be a good idea to keep a record of all your tests, including which ones you may need, when they may occur, and when they are completed. Your age, sex, and health status may determine which tests your transplant team decides are right for you. Blood tests check for certain infections and provide information about: Various blood cell counts, such as: Platelets White blood cells Red blood cells Blood typing (O, A, B, or AB) to help decide your compatibility with a potential donor Panel reactive antibody (PRA) tests measure how active your immune system is. This level is usually higher when more antibodies are being made Chest X-rays will help show the health of your lungs and lower respiratory tract Imaging scans can show the size and shape of your kidneys and major blood vessels. Some imaging scans that may be performed include: Abdominal ultrasound Computerized axial tomography (CAT/CT) Magnetic resonance imaging (MRI) when more detailed information is needed Blood chemistries, including those that measure blood sugar How well your kidneys, liver, and heart are working Electrocardiogram (EKG) shows how well your heart is working and if there is any past damage Urine tests can show whether you have a bladder or kidney disease or infection The presence of viruses and/or antibodies to viruses Whether you may need vaccinations before the transplant Lung tests (which require you to breathe forcefully into a tube) measure how well your lungs are working and how well your blood carries oxygen 12 13

8 Other common tests for kidney transplants include: Test type What does it measure? What could an increase mean? What could a decrease mean? Blood urea nitrogen (BUN) BUN a waste product that is removed from your blood by your kidneys. This is a very important test of how well your kidneys are working Your kidneys are not working properly Diet is too high in protein Dehydration Some anti-rejection medicines may be the cause Liver disease Too much water in your body Bicarbonate (HCO 3 ) Acid/base levels balance of blood as controlled by your kidneys A lung disorder There has been prolonged vomiting Too much use of antacids Kidney failure Calcium Calcium levels needed for blood clotting, building bones and also muscle, heart, and nerve function Being on bed rest for a long time Bone disorders Too much vitamin D Problem with your thyroid or parathyroid glands Inflammation of your pancreas Kidney failure Too little vitamin D There is a problem affecting nutrient absorption from the intestines Creatinine (Cr) Creatinine levels protein waste produced by muscles and released into the bloodstream for removal by your kidneys Dehydration Kidney disease Some anti-rejection medicines may be the cause A blockage within your urinary system Does not apply Phosphate (PO 4 ) Phosphate levels important in creating energy, needed for bone strength Kidney failure Too much phosphate in your diet Bone disorders Too little vitamin D Too little phosphate in your diet Very poor nutrition Potassium (K) Potassium levels reflect potassium in your tissues that is required to change carbohydrates into energy, build protein, and help your heart, muscles, and nerves function Your kidneys are not working properly Some anti-rejection medicines may be the cause The use of water pills causes potassium to be released by your kidneys Not enough potassium in your diet There has been severe or prolonged vomiting or diarrhea Proteinuria Protein in your urine the quantity of protein measured over a 24-hour period A kidney disorder A problem that can happen with diabetes Does not apply Sodium (Na) Sodium levels the balance between electrolytes and water in your body. It also indicates nerve and muscle disorders, as well as kidney and adrenal gland problems Too much sodium in your diet Not enough water in your body Kidney function problems Chronic kidney disease There has been vomiting or diarrhea Urinalysis Parts of your urine white blood cells, red blood cells, bacteria, and protein levels Kidney disease Urinary tract infection Poorly controlled diabetes Does not apply 14 15

9 Keep a record of all your tests Some of the typical tests that transplant patients may have are listed in the following tables. You and your transplant team may use these tables to keep track of the tests you need to have. You can also download a form to keep track of your tests at Your transplant team can check off the tests that you need in the Required frequency column or add any additional tests required by your center. You may want to carry this brochure with you so you always have a record of what needs to happen, when it needs to happen, and when it is done. Your age, sex, and health status may determine which tests you may need. Cancer screening Test Colonoscopy Mammogram Pap smear Prostate-specific antigen (PSA) Upper endoscopy (EGD) Required frequency Date(s) completed Result(s) Follow-up date(s) Imaging/Function Tests and evaluations Test Required frequency Date(s) completed Result(s) Follow-up date(s) Blood/Urine Cardiac catheterization Test Alpha fetoprotein (AFP) Blood typing Coagulation profile Complete biochemical and liver profile Complete blood count (CBC) Drug and alcohol screening Required frequency Date(s) completed Result(s) Follow-up date(s) Cardiac (thallium) stress test Chest X-ray CT/CAT scan Echocardiogram (ECHO) Electrocardiogram (EKG) Magnetic resonance imaging (MRI) Nuclear bone scan Renal function Urinalysis Virology studies Pulmonary function test Ultrasound of abdomen Other Other Test Required frequency Date(s) completed Result(s) Follow-up date(s) Test Required frequency Date(s) completed Result(s) Follow-up date(s) Dental examination Kidney biopsy 16 17

10 What does all this testing mean? Most of the tests are done to help your transplant team decide how to improve your chances of getting the best results from your kidney transplant. These tests and discussions will show if: Your disease can be treated effectively with a kidney transplant T here are any problems, such as blocked or closed blood vessels, that could get in the way of a successful transplant Your heart, lungs, and liver are strong enough for a transplant There are emotional and family issues to deal with Is everyone a candidate for a kidney transplant? If you are considering a kidney transplant, the first step in the process may be to make sure that you are an appropriate candidate. In order to determine your eligibility for transplant, your transplant team may evaluate considerations like your medical history, current health status, financial situation, and caregiver and/or support system. Some of the things that may prevent a person from receiving a transplant include:* Certain types of liver, heart, or lung disease Some cancers Use of alcohol or tobacco, or drug abuse Being HIV-positive and/or having AIDS History of not following medical instructions The most important consideration is that you are healthy enough to have the transplant. * Each transplant center has its own criteria for potential transplant candidates. Be sure to check with your center about the particular factors that might exclude you from being considered for an organ transplant

11 Who are the members of your transplant team, and what do they do? It is important for you to know the medical professionals who will be taking care of you and what they do. Each team is different, but your team may include these people: You are one of the most important members of your transplant team. You are encouraged to share your feelings, ask questions, and discuss issues that are important to you with the rest of your team. The physical therapist may give you an exercise plan to help you keep your muscles strong, control your weight, and keep up a normal activity level after your transplant. The transplant surgeon performs the transplant surgery. He or she may also check your health before the transplant to make sure you re healthy and after the transplant to make sure your transplanted kidney is working well. The transplant doctor or nephrologist is the kidney doctor who checks all nonsurgical aspects of your care, such as rejection episodes and medicines after your transplant. The consultant doctors are medical specialists who make sure you get the care you need. Depending on the type of organ transplant, your doctors may include nephrologists (doctors who treat kidney disease), cardiologists (doctors who treat heart disease), infectious disease specialists (doctors who treat contagious diseases), hematologists (doctors who treat blood disease), oncologists (doctors who treat cancer), anesthesiologists (doctors who manage anesthesia), psychiatrists/ psychologists (doctors who treat mental illnesses), and hepatologists (doctors who treat liver disease). The transplant coordinator is responsible for many duties, some of which include organizing your evaluations, checking lab results, educating you before and after your transplant, giving you discharge instructions, and keeping all your medical information. He or she may help coordinate your care and keep track of how you are doing throughout the transplant process. The social worker can help you deal with any emotional issues, and may help you plan your return to work and other activities. He or she may also help you find a place to live. In addition, he or she can help with finding transportation, financial resources, and getting your medicines. The financial coordinator is trained to help patients and their families deal with finances. He or she can also tell you about ways to get help with medical coverage. The dietitian/nutritionist is trained to give advice about diet and nutrition. This team member may help you with meal planning and any special dietary needs you may have before and after your transplant. The pharmacist can help coordinate your prescriptions before and after your transplant. He or she also may inform you about how the medicines work and how they affect you. Other team members may include other doctors, nurses, and coordinators, depending on your needs. These other team members may include physician s assistants (PAs), operating room and intensive care nurses, nurse practitioners (NPs), medical residents, procurement coordinators, case managers, and transplant assistants

12 Tips for staying healthy before transplant Physical health B eing active and working your muscles to the best of your ability can help you to stay in good physical health. Talk to your transplant team about any physical limitations you may have T alking to a doctor and a nutritionist or dietitian can help you eat healthy, well-balanced meals. You can also talk to your doctor, dietitian, or nutritionist about trying to lose weight if this is something that you are considering D o not drink alcohol or abuse drugs. You may not be able to get a transplant if you smoke, so ask your transplant team if you need help quitting T alk to your doctor about other health problems you may have, including high cholesterol, high blood pressure, and diabetes Discuss your physical activity limitations with your transplant team. Emotional health Talk to your transplant team to help you stay mentally healthy. If you are having trouble coping, it may be a good idea to consider counseling Your transplant center may tell you about support groups and antidepressant medicines Try to stay in touch with the people you care about Try to let people help you by asking them to do things like picking up groceries, running errands, and cooking meals It is important that you consult your transplant team before making any changes to your lifestyle, such as changing your diet or exercise plan, or before changing your medicine routine

13 Tips to help keep your kidney healthy Staying prepared and proactive Finding out about your financial options by talking to someone at your transplant center may help you make financial plans to minimize stress and prepare you for your future Before your transplant, try to arrange for someone to: Take you to the transplant center when the call comes Prepare food and care for you after the transplant Go with you to the center for your follow-up visits and help keep track of your medicines Run errands and do housework for you when you re not able to Transplant recovery Before your surgery, your transplant team will discuss the transplant and possible risks with you in detail. Kidney transplants typically take 3 to 4 hours, but this timing may vary. Your surgeon may update your family while the transplant is in progress. When you first wake up after the transplant, you may feel drowsy and a little sore. You may need to be in the intensive care unit or recovery room for 1 to 2 days. After you leave the intensive care unit or recovery room, you may continue to stay in the hospital for about seven days, but a longer stay is sometimes needed. Your transplant team will explain what you and your caregivers should expect when you return home, what steps you will need to take to monitor your health, and how and when to take your medicines. Make sure you discuss any questions or concerns you have so that you feel prepared and know what to expect after your transplant operation. Your team will schedule frequent follow-up visits with you at the transplant center to make sure your body is adjusting properly and help you to continue your journey with your transplanted kidney. Length of time for kidney transplant operation according to the National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC), accessed October 7, Medicines after transplant Your body has a natural way of protecting itself from things it identifies to be foreign, such as harmful bacteria and viruses, using its defense system (the immune system). Since your transplanted kidney is not your own, your body will recognize this as being foreign and activate your immune system. After your transplant (and sometimes before), you will be prescribed anti-rejection or immunosuppressive medicines to calm (or suppress) your immune system, to help prevent it from attacking your transplanted kidney. You may also take medicines to treat infection and manage other conditions such as cholesterol or blood pressure. These medicines are critical to the success of your transplant. Before you leave the hospital, your transplant team will help you understand what your medicines are for, and how and when to take them. Before taking anything that has not been prescribed for you, including over-the-counter medications or supplements, ask your doctor. He or she will be able to tell you if it is okay to take those medicines. You may experience side effects from your medicines. Ask your doctor any questions you have about this. Tell your healthcare provider about all of the medicines you are taking, including prescription and non-prescription medicines, vitamins, and herbal supplements. Some medicines may affect the way anti-rejection or immunosuppressive medicines work, and anti-rejection or immunosuppressive medicines may affect the way some medicines work. Follow-up tests It is also important that you have follow-up tests done as frequently as advised by your transplant team. The transplant team can check the health of your transplanted kidney and make sure that the medicines are working. Transplant team involvement after transplant If you notice any changes in your health, it is important that you tell your transplant team right away. They are there to help you to continue your journey with your transplanted kidney and answer any questions you may have at any point along the way. 25

14 Kidney dictionary The following is a list of terms you may hear your transplant team use during the transplant process. Acute rejection. The body s way of trying to destroy a transplanted organ because it senses the organ is a foreign substance. Acute rejection usually occurs from the first week to 3 months after the transplant. Antibody (AN-tee-bod-ee). A protein that is produced by the body s immune system when it detects a foreign substance, such as a transplanted organ. Antigen (AN-tah-jin). A substance, such as a transplanted organ, that can trigger an immune response; an immune response may be the production of antibodies. Candidate. A person who is waiting for an organ transplant. Chronic rejection. The failure of a transplanted organ over time. Coagulation (coe-ag-u-lay-shon). The process of blood clotting. Usually the body s way of controlling bleeding. Compliance (com-ply-ants). The process of a person following the instructions of his or her transplant team or center, usually regarding taking medicine. Crossmatch. A test done to see if there is anything in your blood that will react against the donor s cells. Cytomegalovirus (CMV) (sigh-toe-meg-a-lo-vie-rus). A common viral infection that may affect organ recipients since they usually have a weakened immune system. Deceased donor. Someone who has died and donated his or her organs for a transplant. Deceased donor organ. An organ from a person who has been declared brain dead. Diuresis (die-yur-ee-sis). An increased production of urine. Donor. Someone from whom an organ or tissue is taken and used for transplantation into someone else s body. End-stage renal disease (ESRD). Failure of the kidneys to function, requiring the patient to undergo dialysis or a kidney transplant to survive. Graft. A transplanted organ or tissue. Immune system. The body s natural defense mechanism to fight what it detects as foreign bodies. In transplantation, the body may sense the transplanted organ as a foreign body and the recipient s immune system will defend itself by trying to reject the organ. Immunosuppressant. A drug that helps reduce the risk of organ rejection by suppressing the immune system. Noncompliance (non-com-ply-ants). Failure of the patient to follow instructions provided by his or her transplant team or center. Recipient. The person receiving a transplanted organ. Side effect. An undesirable reaction to a drug. Tissue typing. A blood test to identify how closely the tissues of the donor match those of the recipient. United Network for Organ Sharing (UNOS). A private, non-profit organization that manages the nation s organ transplant system under contract with the federal government. Kidney dictionary terms adapted from Merriam-Webster, MedlinePlus Medical Dictionary, mplusdictionary.html, accessed October 7,

15 Important resources The following is a partial list of where you can turn for support, information, and education. Genentech is not responsible for the accuracy of the information contained on third-party Web sites and does not recommend or endorse the content provided on these Web sites. Genentech may from time to time provide grants, sponsorships, or other financial support to certain organizations in compliance with applicable law and regulations. The contents of the Web sites are not intended for the purpose of disease diagnosis or as a substitute for information that is provided to you by your transplant team. You should always discuss your individual symptoms and any questions you have with your transplant team. American Kidney Fund American Transplant Association (ATA) Children s Organ Transplant Association (COTA) Donate Life America Life Options National Foundation for Transplants (NFT) National Kidney Foundation Transplant Living Transplant Recipients International Organization, Inc. (TRIO) TransWeb United Network for Organ Sharing (UNOS)

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