Your Guide to. Liver Transplants.

Transcription

1 Your Guide to Liver Transplants

2 If you and your doctor are considering a liver transplant You are probably wondering what happens next If your doctor has determined that your liver is damaged, and other treatments have not been working for you, you may have been talking about the possibility of a liver 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 liver 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 liver 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. 2 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. 3

3 Important facts about your liver and its functions Your liver is one of the largest organs in your body, consisting of two main sections, or lobes. The left lobe makes up about 40% of the liver, and the right lobe makes up about 60%. The liver receives a double supply of blood: blood rich in oxygen comes from the heart through the hepatic artery, and blood with newly absorbed nutrients comes from the intestines through the portal vein. Your liver is one of the largest organs in your body. The liver has many jobs, including changing food into energy and clearing poisons from your blood. Liver Plays a major role in metabolism, digestion, detoxification, and elimination of substances from your body. Hepatic vein Carries blood away from your liver. What does your liver do? Your liver plays an important role in many vital life processes, including: Breaking down food into the chemicals our bodies need Producing bile (a fluid necessary for digestion) Controlling blood sugar levels Storing vitamins, minerals, and sugar Maintaining hormonal balance Removing toxins from the bloodstream Hepatic artery Carries blood to your right gastric, gastroduodenal, and proper hepatic arteries. Bile duct Transports bile to and away from your liver. Portal vein Carries blood to your liver. 4 5

4 Why might you need a liver transplant? What happens when your liver is not working the way it should? If your doctor has said that there is a problem with your liver, it is usually because a disease is affecting the way your liver is working. This may mean that your body is not: Making the necessary proteins to control blood clotting Filtering toxic substances that you eat, drink, or absorb Storing vitamins, minerals, and sugars that give you energy and protect you from infection Removing waste products properly Producing bile to help you digest food There are many diseases that can injure your liver. If the damage is life-threatening, then a liver transplant must be considered. Diseases of the liver that may be treated with a liver transplant include: Hepatitis B and C (hepatitis B and C remain in the body after a liver transplant. These viruses may come back and act up once again, even with a transplanted liver) Cirrhosis (scarring of the liver due to alcohol use and other causes) Primary biliary cirrhosis Primary sclerosing cholangitis Certain types of liver cancer Autoimmune liver disease Acute liver failure You can learn more about these diseases and other liver transplant terms on pages 26 to 28. You can also visit us online to learn more at 6 7

5 Types of liver transplants In order to have a liver transplant, you will need a donated liver. There are three possible liver transplant procedures that you may want to discuss with your transplant team so that you can decide which option may be right for you: Living donor liver transplant Deceased donor liver transplant Split-liver transplant According to the Organ Procurement and Transplantation Network, the national 1-year survival rates for patients who received a liver transplant from 1997 to 2004 were 86% for patients who received a liver from a deceased donor, and 90% for those who received a liver from a living donor. As with all surgical procedures, there is also a risk of complications associated with liver transplants. Some of the possible complications are listed on page 11. Living donor liver transplant A living donor liver transplant involves removing a portion of a healthy liver from a living donor and transferring it into the body of a waiting recipient. Since the liver is able to make new cells, a part of a donor s healthy liver can be removed and put into another person s body. In the recipient, the transplanted liver part grows to the size needed to support life. The remaining part of the donor s liver also grows. Deceased donor liver transplant Deceased donors are people who have agreed before their death to donate their organs for transplant. If receiving a liver from a deceased donor is an option for you, you may be put on a waiting list until a compatible liver becomes available. You may want to talk to your transplant team if you have questions regarding how long the wait might be for finding a compatible liver. Split-liver transplant A deceased donor liver can sometimes be divided into two parts and transplanted into two recipients: one patient receives the left lobe, while another receives the right lobe. This transplant is similar to living donor liver transplant. This is possible because the liver has the unique ability to grow new cells. Split-liver transplant helps to increase the number of organs available for transplant. Living donors can be parents, siblings, aunts and uncles, children who are at least 18 years old, and a relative, such as cousins. There is also a possibility that a non-related donor may be found. Non-related living donors could be a spouse, friend, coworker, or an altruistic donor (someone who doesn t know the patient but donates for the welfare of others). Relatives make the most successful donors because their blood and tissues are usually similar to yours. If a living donor liver transplant is a possibility, your transplant center may have a long list of requirements for the potential 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 Liver volume and structure verified by CT scan Not everyone who needs a liver transplant is a candidate for a living donor transplant. A patient may be too sick for part of a donated healthy liver to support his or her stage of disease. In this case, the patient would require a whole liver, which would come from a deceased donor. National 1-year survival rates for liver 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 liver 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 liver transplant. These may include: Infection Rejection of the transplanted liver Bleeding Clotting of a blood vessel Narrowing or leaking of the bile ducts Liver not working properly Discomfort (possibly for up to 6 months) 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 liver, 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. Panel reactive antibody (PRA) tests measure how active your immune system is. This level is usually higher when more antibodies are being made 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 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 liver 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 Common blood tests for liver transplants include: Test type What does it measure? Albumin A protein produced by your liver and released into your bloodstream Alkaline phosphate (ALP) An enzyme produced in your liver, bone, and placenta and released into your bloodstream Alanine transaminase (ALT) An enzyme produced in your liver and released into your bloodstream when liver cells are injured Aspartate transaminase (AST) An enzyme released into your bloodstream when your liver is injured Bilirubin A component of bile, a digestive enzyme produced by your liver International normalized ratio (INR) The ability of your liver to make prothrombin, a protein that is important for blood clotting Lactic acid dehydrogenase (LDH) An enzyme found in body tissues, including your heart, liver, and kidneys, that is measured to evaluate tissue damage 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) Tests and evaluations Imaging/Function Blood/Urine Test Required frequency Date(s) completed Result(s) Follow-up date(s) 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 catheterization Cardiac (thallium) stress test Chest X-ray CT/CAT scan Echocardiogram (ECHO) Electrocardiogram (EKG) Magnetic resonance imaging (MRI) Hepatitis serologies 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 Liver 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 liver transplant. These tests and discussions will show if: Your disease can be treated effectively with a liver transplant There 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 liver transplant? If you are considering a liver 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 a liver 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 heart or lung disease Some cancers Use of alcohol or tobacco, or drug abuse Severe or active infection 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 transplant 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 liver is working well. The transplant doctor or hepatologist is the liver 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 Being 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 Talking 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 Talk 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 liver 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. A liver transplant can be a long operation and may last up to 12 hours. 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 up to two weeks, 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 liver. Length of time for liver transplant operation according to the National Digestive Diseases Information Clearinghouse (NDDIC), 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 liver 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 liver. 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 liver 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 liver and answer any questions you may have at any point along the way. 25

14 Liver dictionary The following is a list of terms you may hear your transplant team use during the transplant process. Acute liver failure. Liver failure occurs when large parts of the liver become damaged beyond repair and the liver is no longer able to function. A rarer condition known as acute liver failure occurs rapidly (in as little as 48 hours) and can be difficult to detect at first. There are different causes of acute liver failure, including hepatitis A, B, and C. 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. Alcoholic cirrhosis (sir-o-sis). A chronic inflammation of the liver caused by excessive alcohol intake. 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. Ascites (ah-sie-teez). Excess fluid in the abdomen. Autoimmune hepatitis (aw-to-i-mune hep-ah-tie-tis) or autoimmune liver disease. A long-term disease that makes the body s immune system attack the liver. Biliary atresia (BIL-ee-a-ree ah-tree-zha). A liver disease in newborn babies that prevents proper development of the main bile ducts, which may be blocked or missing. Candidate. A person who is waiting for an organ transplant. Cholestasis (koe-le-stay-sis). A blockage of bile in the liver or bile ducts. Chronic rejection. The failure of a transplanted organ over time. Cirrhosis (sir-o-sis). An irreversible scarring from chronic inflammation that causes the liver to be unable to regenerate. 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 transplant. Deceased donor organ. An organ from a person who has been declared brain dead. Donor. Someone from whom an organ or tissue is taken and used for transplantation into someone else s body. Encephalopathy (en-sef-ah-lop-ah-thee). Damage of the brain and central nervous system caused by a chemical imbalance in the blood. Graft. A transplanted organ or tissue. Hepatitis (hep-ah-tie-tis). An inflammation of the liver that can be caused by many things, including viruses and alcohol. Hepatitis A (hep-ah-tie-tis ay). A virus that causes inflammation of the liver. Since the virus is shed in the stool, the most common means of transmission is through contaminated food or water. Hepatitis B (hep-ah-tie-tis bee). A virus that causes inflammation of the liver. Infection with the virus can cause scarring of the liver, liver failure, liver cancer, and even death. Hepatitis B is spread through infected blood and other body fluids. Hepatitis C (hep-ah-tie-tis sea). Hepatitis C is a liver infection spread through infected blood and body fluids. Some people who get hepatitis C have it for a short time and then get better. This is called acute hepatitis C. But most people get longterm, or chronic, hepatitis C. This can lead to liver damage as well as cirrhosis, liver cancer, and liver failure. 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

15 Important resources Immunosuppressant. A drug that helps reduce the risk of organ rejection by suppressing the immune system. Jaundice (JAUN-dis). A yellow color of body tissues, most noticeable in the skin and eyes, caused by the liver s inability to remove bilirubin from the blood. Metabolic liver disease. Liver enzyme deficiencies that prevent carbohydrates, fat, protein, and vitamin metabolism, which can lead to cirrhosis or result in serious diseases in other organs and tissues. Model for end-stage liver disease (MELD). This is a mathematical formula used to determine which patients are the sickest and most in need of a liver transplant. It uses blood tests to identify the severity of each patient s disease. Nonalcoholic steatohepatitis (NASH) (ste-a-toe-hep-ah-tie-tis). Liver inflammation caused by a buildup of fat in the liver. Noncompliance (non-com-ply-ants). Failure of the patient to follow instructions provided by his or her transplant team or center. Portal hypertension. Increased blood pressure in the portal vein system that carries blood from the digestive organs to the liver. Primary biliary cirrhosis (PBC) (BIL-ee-a-ree sir-o-sis). Progressive and permanent damage of the bile ducts in the liver due to an unknown cause. Primary sclerosing cholangitis (PSC) (skle-roe-sing koe-lan-jie-tis). Progressive inflammation and thickening of the bile ducts, causing an interruption of bile flow from the liver. 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. 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 Liver Foundation 800-GO-LIVER American Transplant Association (ATA) Children s Organ Transplant Association (COTA) Donate Life America Hepatitis Foundation International National Foundation for Transplants (NFT) Transplant Living Transplant Recipients International Organization, Inc. (TRIO) TransWeb United Network for Organ Sharing (UNOS) Liver dictionary terms adapted from Merriam-Webster, MedlinePlus Medical Dictionary, mplusdictionary.html, and the Mayo Clinic, both accessed October 7,

16 Notes 30 31

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