Adult Liver Transplant A Guide for Patients If you are deaf or hard of hearing, please let us know. We provide many free services including sign language interpreters, oral interpreters, TTYs, telephone amplifiers, note takers and written materials. This booklet provides general information about liver transplant at the University of Minnesota Medical Center. It explains what you can expect during your transplant evaluation and your hospital stay. It also describes your role in caring for yourself after your transplant. Please ask the transplant team any questions you may have at any time. Recent statistics show that our results meet or exceed expected standards. For current survival rates and other statistics, you may visit one of the websites below. • The United Network of Organ Sharing: www. unos.org • One-year Survival Rates for Kidney, Pancreas and Liver Transplant: www.srtr.org • The Organ Procurement and Transplant Network: https://optn.transplant.hrsa.gov/ • University of Minnesota educational videos: www.mytransplantplace.com • University of Minnesota Liver transplant website: https://www.mhealth.org/care/treatments/livertransplant-adult If you have questions about this information, please ask your doctor at your next visit to the Transplant Center. Contents Overview Overview................................................................. 1 The liver is a very important organ in your body. It performs three major tasks: Your transplant evaluation.................................... 2 • It makes proteins from digested food. These proteins help fight infections and stop bleeding. After the evaluation............................................... 4 A note about insurance......................................... 5 • It helps the body rid itself of waste products. It also helps to break down medicines and flush them from the body. Your donor.............................................................. 6 Waiting for your transplant.................................. 7 • It secretes bile, which helps the body absorb fat. Fat is needed for energy and for absorbing vitamins A, D, E and K. Problems to watch for while you wait................. 9 Coming in for your transplant surgery.............10 The operation.......................................................11 When your liver doesn’t work well, a transplant may be needed. The goals of liver transplant are to extend your life and improve your quality of life. Possible surgical complications..........................11 After your transplant...........................................12 Liver failure can be caused by a number of things, including inherited diseases, infections and toxins such as alcohol and some medicines. Some of these diseases can come back in the new liver. Your transplant doctors will tell you if you are at risk for this. Going home..........................................................13 Possible complications after transplant.............15 Keeping track of your vital signs and lab tests.16 We are here to help..............................................17 The best time to have your transplant is when your health is stable but you are showing signs of liver failure. Signs include: Contacting UNOS................................................17 • Fluid retention (swelling or bloating) • Feeling very tired • Problems sleeping • Confusion • Unusual bleeding • Yellow skin and eyes (jaundice) If you vomit blood or pass blood in your stool (bowel movements), this is a medical emergency. Go to the nearest emergency room. Be sure to tell your doctor afterward. 1 Your evaluation will consist of several doctor and clinic visits. We urge your family or close friends to come with you. You will receive a lot of information, so please take notes and write down questions. Your transplant evaluation Your local doctor will let you know when it is time to meet with a doctor from the transplant team. He or she will ask you to call us to start the process. If you do not want to start or continue your evaluation, please let us know. At that time, please do the following: • Contact your health insurance provider to ask about your coverage. Explain that you will be having a liver transplant evaluation at the University of Minnesota Medical Center. This is also a good time to discuss post-transplant costs for home care and medicines. (Your social worker will talk to you about this during your evaluation. A financial representative is available to talk with you if you have questions about your insurance coverage.) Drug and alcohol evaluation If you have a history of IV drug use or heavy alcohol use, you will need to have a formal chemical dependency evaluation. The transplant social worker will explain how to arrange for this. You must follow through with any recommendations from this evaluation, including further treatment. You must be sober for at least 6 months before starting your transplant evaluation. • Have your medical records sent to the transplant office. Once we receive your records, we will schedule your evaluation. We may test you for drug use at any time. You cannot receive a new liver until you have been alcohol-free and drug-free for one year. You will be asked to sign a contract to show that you agree to this. If you are very sick, you may have to stay in the hospital during your evaluation. The goal of your evaluation is to decide if liver transplant is the best treatment for you. We will: Doctor consultations • Check for problems that might occur during or after your transplant. You will meet the transplant team doctors. Your transplant coordinator may be with you during some of these visits. • Gather recent medical information for the surgery. • The transplant hepatologist (liver doctor) will review your records. If the doctor thinks you might need a transplant, you will see him or her regularly. He or she will do an exam, then help manage your disease. • Review and adjust your diet and treatment so that you will be in the best possible condition for a transplant. • The surgeon will explain the operation, possible risks and donor options. • Teach you more about liver transplant surgery, after-care and what to expect while waiting for a transplant. You may need to see other doctors as well, including a cardiologist (heart doctor), nephrologist (kidney doctor), endocrinologist (hormone doctor), neurologist (brain doctor) and psychiatrist. Feel free to ask questions at any time. • Allow you to meet the transplant team. • Discuss your liver transplant options. 2 If you have bone disease, we may have you take medicine to strengthen your bones before your transplant. Please tell your transplant coordinator if you’ve had this test in the past. Blood tests You will have many blood tests, including: • Standard tests to measure liver function, protein levels, electrolytes and clotting factors. • If you have a liver tumor, we will need to do a chest CT (computerized tomography scan) and a bone scan to see if the tumor has spread. • Blood type tests. (We will check your blood type twice.) • Other scans and tests as needed. These may include an MRI (magnetic resonance imaging) and a CT. If you need further tests, we will explain them in detail. • PSA test for men over 50 (to check for prostate cancer). • Pregnancy test for women of childbearing age. • Tests for certain viruses such as hepatitis A, hepatitis B, hepatitis C and HIV. Digestive system check All patient over age 50 need to have a colonoscopy, if they have not had one in the past year or so. If you have had one within the past five years, please have the results sent to your transplant coordinator. Nutrition check You will meet with a dietitian. He or she may check your height and weight, then review your blood work to check your nutrient levels. If you have vomited blood in the past, please let us know. You will need to have regular endoscopies. The dietitian may ask you to write down everything you eat or drink for 3 days. He or she will use this record to measure your routine calorie and protein totals. You may also receive advice about your diet. Please tell the dietitian if you would like to meet with him or her again. Heart studies You will have an ECG (electrocardiogram). If you are over age 40 or have a history of heart problems, diabetes or high blood pressure, you will need to have a dobutamine stress echo test. (We will give you medicine to make your heart beat as if you were exercising. We will then use ultrasound waves to see how well your heart is working.) Scans and X-rays You may have: • A chest X-ray. If you have a history of heart problems or if your tests are abnormal, you will be asked to meet with a heart doctor (cardiologist). • An ultrasound of your liver. This test uses sound waves to show us the size, shape and position of your liver. It can also show if there are any unusual growths or masses. The radiologist (X-ray doctor) will use the ultrasound to check the blood flow to your liver. Lung tests If you smoke or have ever had lung problems, you will need special breathing tests (called pulmonary function tests). We require you to stop smoking. • A bone density scan (DEXA scan). This will show how strong your bones are. People with liver disease sometimes have advanced bone disease. 3 Social Services consult Liver cancer You will meet with a social worker during your evaluation. He or she can describe support services and help with changes that you and your family may need to make in the short-term. During a medical exam we sometimes find a tumor in the liver. This may be a type of liver cancer. Some liver diseases increase the risk of liver cancer (cirrhosis, viral hepatitis B and C, hemochromatosis). Your social worker will also discuss financial concerns and help you arrange a chemical dependency evaluation, if needed. Anyone who has misused alcohol or drugs will be asked to have this evaluation. If you have many tumors or large tumors, you may not be eligible for a transplant. In this case, your doctors will discuss your options with you. You may be asked to meet with a cancer doctor (oncologist). Financial consult After the evaluation A financial case manager will discuss the costs of both the transplant and the medicines needed afterward. He or she will help you understand your insurance—what it will cover and what it won’t. At the end of your evaluation, the transplant team will meet to discuss your results. They will discuss any concerns they may have about your test results and may suggest further testing. Routine health care If they decide that you are a good candidate for transplant, we will send all of your information to your insurance company to ask for approval. All necessary dental work should be completed before your transplant. You should see your dentist every 6 months while you are waiting for the transplant. You may choose not to have the transplant. In this case, you may continue your current treatment or choose to end it. No matter what you decide to do, a doctor will still provide your care. Please see your family doctor for the following tests and vaccines. Have your doctor send all test results to your transplant coordinator. Adult transplant waiting list • Make sure that you are vaccinated for both hepatitis A and B viruses. Being vaccinated against hepatitis B will increase the number of available donors you can accept. Once your insurance has approved your transplant, you will be placed on the transplant waiting list. You will receive: • You will need to have a pneumococcal vaccine (shot to prevent pneumonia), if you have not had one in the past 5 years. Please keep a record of all shots. • A letter stating that your name has been added to the list. • A doctor’s order showing what lab tests you will need at your local clinic. Bring this to the clinic. The order will state how often you need lab tests and where the clinic should send your results. • We suggest yearly flu shots. • Women should see their family doctor for a yearly Pap test and, if they are over age 40, a mammogram. If you have had an abnormal test, tell your coordinator. 4 Your MELD score MELD stands for Model for End-Stage Liver Disease. The MELD score uses a complex formula that includes specific blood values for total bilirubin, INR, sodium and creatinine. Your MELD score is based on your lab results. Adult scores range from 6 to 40. The patient with the highest score receives the next liver available for his or her blood type. Research studies The higher your score, the more often you will need lab tests. Your doctor or transplant coordinator will tell you what your MELD score is at each clinic visit. We may invite you to take part in liver transplant studies before and after your transplant. Doctors will discuss this with you at your clinic visits. Your lab results must be sent to the transplant office on time. (See below.) Make sure your clinic sends the results on time, or call your transplant coordinator after each lab test. If you do not, you may fall to a very low MELD score. This means your transplant could be delayed. If you have questions, please talk to your coordinator. A note about insurance Every health plan is different. Some plans will pay 100% of your costs. Others will pay 80% or less. Call your insurance company or read your policy. Find out what your plan will pay for and what it won’t. If you have questions or concerns, please speak to a financial case manager at the Transplant Center. Your MELD score will change over time. A member of your transplant team will tell you how often you need lab tests. Some health plans will only pay for transplants done in certain medical centers. If your plan does not approve a transplant at our hospital—or if it limits the services it will pay for—you may need to pay part or all of the cost. In this case, your financial case manager will help you explore other resources for payment. • If your MELD score is 25 or greater: You will need new lab tests every week. Fax your results within 48 hours. If we receive tests that are more than 7 days old, you must repeat the tests. • If your MELD score is 19 to 24: You will need new lab tests every month. Fax your results within 7 days. If we receive tests that are more than a month old, you must repeat the tests. After a liver transplant, the cost of your health and life insurance may increase. Future insurance companies may refuse to insure you. Your current plan may refuse payment for your medical care because you have a pre-existing condition. • If your MELD score is 11 to 18: You will need new lab tests every 3 months. Fax your results within 14 days. If we receive tests that are more than 3 months old, you must repeat the tests. • If your MELD score is 10 or less: You will need new lab tests every year. Fax your results within 30 days. If we receive tests that are more than 12 months old, you must repeat the tests. 5 The donor’s health history may affect the success of your transplant. If the organ is damaged before we receive it, this may affect your outcome as well. Your donor Your new liver will be “matched” according to size and blood type. Usually, a liver is chosen from a donor who has the same blood type as the recipient. There is a small risk of getting a disease from a deceased donor (such as HIV or hepatitis). All donors are tested for disease, but some diseases may not show up at the time of testing. The new liver must fit into the body in about the same position as the original liver: the upper side of the abdomen, under the ribs. Expanded criteria donors The blood vessels leading to and from the liver can be more easily connected if they are about the same size as those of the old liver. These are deceased donors who may be older than standard donors or have had certain health problems. They are not perfect donors for everyone, but they may be a good fit for some people. Please tell your surgeon if you would like to learn more about this option. Living donors The wait time for a deceased donor liver can be very long. At the University of Minnesota Medical Center, it is possible to use a live donor. A living donor transplant involves taking part of the liver from a family member or friend and using it for transplant. We can do this because the liver is one of the few organs that can regenerate (grow back). A living donor may help you avoid a long wait for your new liver. The donor must undergo a major surgery that involves some risk. The donor must be in good health to qualify. There are three types of donors: deceased donors, expanded criteria donors and living donors. A living donor is often a friend or family member. If someone you know is interested in being a living donor, he or she can contact the transplant office after your evaluation is completed. A donor needs to have a medical and psychological evaluation. Please refer to the booklet Living Donor Liver Transplants. Deceased donors A deceased donor is someone whose tissues or organs are donated soon after he or she dies. Some of these donors have livers that are large enough to split between two people. Split livers are used only in smaller recipients. If this is an option for you, the surgeon will tell you during your evaluation. If you are very ill, a living donor may not be an option for you. 6 • Make sure to eat enough protein. Eat both animal and plant sources. Animal sources include meat, fish, chicken, eggs and dairy products (such as milk, cheese, and yogurt). Get plant protein from nuts and seeds, soy products, beans and legumes. Your dietitian can tell you more about how to get enough protein. Waiting for your transplant It may be some time before you have your transplant surgery. While you wait, it is important to follow the steps listed below. See your doctor regularly It is your job to schedule all doctor visits. • Your dietitian can help you build a healthy meal plan. The goal is to get enough calories and protein without putting stress on the liver. You will need to see a liver doctor (hepatologist) from The Transplant Center at least every 3 months. He or she will assess your condition, order lab tests, adjust your medicines and tell you how often you will need to have check-ups. Some of these check-ups may be done with your family doctor. Quit smoking If you smoke, you need to stop. Smoking increases the risk of heart and lung problems (such as pneumonia) after surgery. Smoking after transplant also increases your risk of cancers of the mouth, throat and lungs. You will need to see your family doctor for general health care. Your doctors will write to each other to share the results of your exams and note any changes in your health. Be sure we know how to contact you To stay active on the transplant waiting list, you will also need to have regular lab tests at your local clinic. (See “Your MELD score” on page 4.) If your liver will come from a deceased donor, we will call you when a liver is available. If we can’t find you, you may lose the chance for this liver. We will not leave a message on your answering machine or voice mail. Eat the right foods Your liver disease may change the way that your body stores nutrients. For this reason: We must have current phone numbers where you can be reached 24 hours a day. This may include numbers for close friends, family and work. Please call us right away if a phone number changes. You will also need to contact the transplant office any time you are in the hospital. • Your doctor may suggest special vitamin and minerals supplements. Do not take any other vitamin, minerals or herbal products without first discussing them with your doctor. Some of these products may cause liver problems. Please tell your transplant coordinator if you start any new medicines, vitamins or herbal products. It is helpful if one family member always knows where to reach you. Plan your transportation • If you have fluid retention (bloating or swelling), you may need to restrict your sodium (salt) intake. Read nutrition labels on all packages and try to stay below 2000 mg of sodium per day. Foods in cans, boxes or jars tend to have the most sodium. Whole foods such as fruits, vegetables, fresh meat and whole grains (rice, noodles) are best. If your liver will come from a deceased donor, arrange your ride to the hospital in advance. Plan more than one route in case of rush hour or bad weather. 7 You may need to arrange air travel if you live more than six hours from the hospital. It might be a good idea to call your local airlines to get their schedules. • A list of your current medicines (bring this to every clinic or hospital visit) • A favorite pillow or blanket. Some families arrange for a company plane. Check with corporations in your area—they may be willing to make a plane or pilot available. This is good public relations, which is why many are able to help. If your liver will come from a deceased donor, be sure your packing list is ready when the doctor calls. Prepare your family and friends Plan for your children and pets Please tell visitors that plants and flowers (cut or dried) are not allowed in your room. Your medicines will lower your immune system, and plants and flowers may increase your risk for fungal infection. When you return home, this will not be a problem. You will be in the hospital for at least 2 weeks. Some people stay as long as 2 months. If you have children, now is the time to plan for their care while you are in the hospital. Get them used to another home if they will be staying there. Your children may visit you in the hospital, but they must be carefully supervised and have no contagious diseases. Remind your family and friends that they need to take care of themselves in order to be the best possible support for you. This includes getting plenty of sleep, eating regular meals and limiting caffeine and tobacco. If you have pets, you will need to arrange for their care as well. You might also warn them that you will tire easily for the first three to six months after your transplant. Plan where your family can stay Prepare yourself emotionally If family and friends will stay in the Twin Cities while you are in the hospital, start looking for hotels. You may ask your social worker for options. Or call our Accommodations Office at 612-273-3695 or 1-800328-5576. Waiting for your transplant is stressful. Patients have told us that being in the hospital after the transplant is also difficult. Please think about how you and your family have dealt with great stress in the past. Think about what helped you through these periods as well as what you would like to do differently this time. Family members may not stay overnight in the hospital if you have a semi-private room. If you are having a hard time, please ask for help. Social workers, transplant coordinators, clergy and other support staff are here for you. You may want to ask your social worker about our weekly support groups. Family and friends are invited to attend. Plan what to bring to the hospital Make a list of items to bring with you to the hospital. Be sure to include: • Comfortable clothes (jogging suits, sleepwear) that have soft, elastic waistbands or no waistbands Finally, try to take a tour of the University of Minnesota Medical Center. This may be very helpful for you and your family. Your social worker can arrange the tour. 8 Problems to watch for while you wait Fever Be on the alert for any of the following symptoms. These may be signs that your liver disease is getting worse. If you notice a change, call your family doctor and your transplant coordinator. Call your family doctor if you have a fever over 101°F (38.3°C) taken under the tongue. If your liver is failing, you cannot fight germs as well and may get sick more often. An illness can be much more severe for you than for other members of your family. Feeling sleepy or mentally cloudy People with liver disease often have low energy and trouble sleeping. It is common to want to sleep all day and stay up all night. If these are problems for you, be sure to tell your doctor. Take a short nap in the afternoon if you need to. Fluid retention When the liver is not working well, fluid may leak out of your blood vessels and build up in your abdomen (belly). This fluid is called ascites (uh-SYteez). If your belly gets large and you have trouble breathing, call your transplant coordinator or go to the emergency room. You may need to have fluid removed from your belly. As your liver disease gets worse, your ammonia levels may rise. (Ammonia is a waste product of the body.) This can cause your thought process to slow or you may feel confused. Your family may be the first to notice this. You might need medicine to help you think more clearly. If you feel this way, do not drive. Swelling or fluid build-up may also occur in other parts of the body, such as in your legs or ankles. This is called edema (uh-DEE-muh). Signs of bleeding It is important to watch for any signs of blood in your vomit or stool (bowel movements). This can be life threatening. Call your family doctor or go to the emergency room if: If you notice swelling, it may help to limit your salt intake. • Your vomit is bright red or dark brown (like coffee grounds). When your liver isn’t working well, you may notice that your skin or the white parts of your eyes turn yellow. This is called jaundice (JAWN-dis). You may also notice darker urine or itching skin. This is not unusual. Jaundice • Your stool is black. You may also notice that you bruise more easily and that bleeding from cuts may be harder to stop. You may have nosebleeds. If using pressure will not stop the bleeding, call your family doctor or go to the emergency room. Be sure to take good care of your skin and use lots of lotion. You may also ask your doctor for medicines to help with the itching. 9 Your family can stay with you until it is time to go to the operating room. We will then direct them to the waiting area on the third floor. After your surgery, the doctors will meet them there. Coming in for your transplant surgery If you need to contact the transplant unit before you arrive (night or day), call 612-273-3000. Ask for the Solid Organ Transplant Unit. Living donor transplants Deceased donor transplants If you will receive a liver from a living donor, we will give you a date for your surgery. If you will receive a liver from a deceased donor, you will get a call from a doctor at the University of Minnesota Medical Center. Calls like this often come at night, so be sure to answer your phone. The day before surgery: You will come to the Transplant Center for a physical exam. This will include blood tests, chest X-rays and an ECG. We will also teach you how to get ready for the surgery. The doctor will ask you to come to the hospital as quickly (and safely) as possible. Please be sure to: The day of surgery: Please arrive at 5:30 a.m. Go to the Same Day Admission Unit (3C) at the University of Minnesota Medical Center. • Get the doctor’s name and phone number. • Ask the doctor if you should stop any of your medicines. If you take insulin for diabetes, ask what to do about your insulin. We will give you elastic stockings (to prevent blood clots in your legs) and a hospital gown. Please remove dentures, glasses, nail polish, lipstick, makeup, jewelry and hairpins. Leave your valuables at home, with Security or with your family for safekeeping. • Stop all foods and liquids. If you have taken insulin, you may eat hard candy or drink glucose fluids (juice, regular soda pop) to prevent low blood sugar. We will insert an IV (intravenous) line. This allows us to give you fluids and medicines during the surgery. The doctor in charge of your anesthesia medicine (the anesthesiologist) will also come to see you. Once your arrive at the hospital, please stop at the Admissions Department. They will know you are coming and will direct you to the Transplant Unit. Once you are admitted, we will prepare you for surgery. Your family can stay with you until it is time to go to the operating room. We will then direct them to the waiting area on the third floor. After your surgery, the doctors will meet them there. • You will have a chest X-ray, ECG, blood tests and urine tests. • You may need enemas to clean out your intestines. • You will be told how to take a shower using special soap. • The doctor in charge of your anesthesia (anesthesiologist) will do a brief exam. • We may insert an IV (intravenous) line to give you fluids and medicines. 10 The operation Possible surgical complications • Bleeding: Bleeding is a major concern during and right after surgery. A blood transfusion will be given if needed. You may need to go back to surgery to correct further bleeding. A liver transplant is very complex. The average surgery takes 6 to 10 hours to complete. The surgeons must isolate the major blood vessels and bile duct of your liver and attach the “new” liver to the same vessels. They will remove the old liver and gallbladder. • Breathing problems: The liver, lungs and diaphragm are located close to each other. For this reason, fluid build-up as well as short-term swelling in the new liver can make it hard to breathe deeply. You will receive medicine to help prevent pain and to keep you relaxed. You will need the help of a breathing machine (respirator) until you can breathe on your own. The surgery is long because removing the diseased liver can be difficult. If you have had other surgeries, you may have scar tissue that causes tissues to stick together. Also, poor clotting can cause bleeding. You may receive blood products (a blood transfusion) to make up for this loss. • Infection: The drugs used to prevent rejection may limit the body’s ability to fight infection. We will give you antibiotic (germ-fighting) medicine before and after surgery. (Most people take this for the rest of their lives.) We will test you often for early signs of infection. Your incision will be in the upper abdomen, just under the rib cage. • Obstruction (blocked vessels): Your blood vessels or bile ducts may become blocked right after surgery. This may slow the flow of blood or bile to and from your new liver. We will do an ultrasound after surgery to check the blood flow. Liver Bottom of rib cage While most patients come in with a swollen spleen, this is rarely removed during the surgery. The spleen may get smaller in the weeks after the transplant. Your spleen helps to maintain a good blood flow through your new liver. It is only removed when it causes problems or when your liver donor has a different blood type. • Kidney damage: You may have kidney problems after your surgery. These may be short-term or lifelong and have a number of possible causes. Sometimes liver disease can affect the kidneys. At other times, anti-rejection drugs may affect kidney function. For some people, the blood flow from the kidneys is disrupted during surgery, causing the kidneys to function poorly for several days. (In this case, kidney function will often improve over time.) Some people need dialysis for a time after surgery. After your new liver is in place, your surgeons will watch for signs that it is healthy and has a good blood supply. One of the surgeons may update your family at this time. We will watch your urine output and do blood tests to check your kidneys. You may have a tube in your bladder (a urinary catheter) for several days until your fluids and kidneys are stable. Incision 11 • Chest tube: In rare cases, a tube may be placed in your lungs to help drain fluid. This is temporary. After your transplant The Intensive Care Unit • Foley catheter (urinary tube): This tube will be in your bladder for a number of days until your fluids and kidneys are stable. It allows the nurses to check your urine output. After you leave the operating room, you will be taken to the adult Intensive Care Unit on 4D. You will stay there until you are stable and able to breathe on your own. Visiting hours are limited. Please ask your nurse for more information. • Intravenous (IV) lines: You will have many IV lines, including a “central line.” This tube is placed in a large vein near the heart. We use it to give medicines, fluids and blood transfusions. It is also used to take blood samples and check fluid pressures in the body. You may have this until the day you leave the hospital. You may be slow to wake up after surgery. We may give you medicine to control pain and help you relax. You will find that many tubes were placed in your body during surgery. • Endotrachial (breathing) tube: You will have a tube in your throat to help you breathe. It may be uncomfortable, but we will give you medicine to help you relax. You cannot talk while the tube is in your mouth. The doctors will remove the tube as soon as you can breathe on your own. • Nasogastric (NG) tube: This helps keep your stomach empty so you don’t get nauseated (feel sick to your stomach). During surgery, the tube is placed in the nose and goes down into your stomach. It will stay in place until you can pass gas and have bowel movements. You cannot eat when you have an NG tube. • Biliary stent (tube): This tube is placed in your bile duct at the time of surgery. It allows bile to flow freely while the stitches in your bile duct heal. Your surgeon will decide when to remove the stent. There are two kinds of biliary stents: • Compression sleeves: These sleeves surround your lower legs. They will inflate and deflate every so often. This helps blood flow and prevents blood clots. Once you can get up and walk, you will not need them. ȤȤ An external stent comes out the front of the abdomen. It drains bile into a small plastic bag. The bile often looks golden or dark green. The Transplant Unit ȤȤ An internal stent is placed inside your body at the site where your new bile duct connects with your old one. It allows the tissue to heal without scarring and blocking bile flow. Once you are stable and your breathing tube has been removed, we will move you to the Transplant Unit. You may be in a single or double room. We will draw blood tests daily, usually through your central line. You may also have X-rays and a liver biopsy to make sure your liver is working well. • Jackson-Pratt (JP) tubes: These help drain the extra fluid and blood from the surgical area in your abdomen. They are attached to soft plastic bulbs that provide gentle suction. You may be sent home with one of these drainage tubes. We will tell you how to care for it. We will remove the tube during one of your follow-up visits. While you are on the Transplant Unit, you will learn about your medicines and how to take care of yourself at home. You will need to go to two different classes. Your nurse will schedule these for you. You will also receive a handbook for patients. This 12 You will need to write your lab results in your log book and call them in to the transplant office. The transplant coordinator will call you if there are changes or concerns. If you do not give us your lab results, we will not know if your liver is working well. provides general information and a place to write your lab results. Your nurse will work closely with you as you learn. By the time you go home you will know how to take your medicines, record your lab values, check your blood pressure and more. Once you go home, you will need to keep track of your lab values and report them to the transplant office for the rest of your life. Follow-up visits Your nurse will arrange for you to see a doctor at the Transplant Center one week after you go home. At that time, the surgeon will check your incision, drains, medicines and pain control. You will also meet with your transplant coordinator. You must bring your medicine card and patient handbook to this appointment. Going home Expect to be in the hospital for at least 2 weeks. Some people stay as long as 2 months. Once you have attended the self-care classes and know how to care for yourself, you will leave the hospital. If you were very sick before your transplant, you may move to a short-term care facility or rehab (rehabilitation) unit until you are strong enough to go home. You may still have a JP tube or stent. You may still have staples in your incision. You will return to the clinic again in a couple of weeks. After that you must return 3, 6, 9 and 12 months from the date of your transplant, and then once a year for the rest of your life. You will be seen more often if you have any special problems. Please remember to schedule your yearly visits. You will not be reminded. If you live far from The Transplant Center, you may have some of this follow-up with your family doctor. However, you must always stay in close contact with your transplant team. If you did not attend classes before leaving the hospital, please call the Patient Learning Center at 612-273-4894 to schedule them. It is helpful to bring someone with you to class. After you go home, a home health nurse may come to visit for the first couple of weeks. He or she will help with routine blood tests, check your incision for infection, change bandages, review your medicines and provide other care. If have any questions, please call your transplant coordinator. Please remember to see your family doctor every year. Your doctor will check your heart, blood pressure, cholesterol and general health. The Transplant Center will provide care for your new liver. Biliary stents Blood test results When you first go home, you will need to have your blood checked 2 or 3 times a week. This will decrease over time to blood tests every other month. You will need blood tests for the rest of your life. This will tell us how well your liver is working. Just because you feel well does not mean that your liver is healthy. 13 If you have a biliary stent, you will likely have it for 6 weeks to 3 months. Your surgeon will tell you when the stent should come out. If you have an internal stent, it may pass out of your system in your stool without you even knowing it. You will have an X-ray about 6 weeks after surgery to see if this has occurred. If the stent is still in place, you will have an endoscopy to remove it. consider your new liver to be foreign as well. These cells can attack the liver. If not controlled, they could cause the body to reject the new liver. Healing after surgery Your energy level will be low when you first return home. Keep in mind that you just went through a major surgery and will need time to recover. It may take 3 to 6 months before you start to feel normal again. To prevent or control rejection, you must take antirejection drugs (immunosuppressive medicines) for the rest of your life. These medicines may reduce your body’s ability to fight infections. To prevent some of the most common serious infections, you will also need to take: Please remember: • You should not lift anything heavier that 10 pounds for at least 6 weeks after you return home. • You may not feel like eating much. Do your best to eat small meals and snacks throughout the day to maintain your weight. • an anti-fungal medicine for a short time (nystatin, Mycelex) • an anti-viral medicine for three to six months (acyclovir, ganciclovir) • Some people have problems sleeping. If you need to take a nap in the afternoon, do so. Your energy will improve with time. • an antibiotic for the rest of your life (Bactrim, Septra) • When you’re feeling better, you may notice the texture and color of your skin improve. The jaundice begins to clear and is usually gone in 3 to 4 months. Other possible side effects are listed with the drugs that follow. You may have more side effects right after the transplant, but these will often go away over time. Regular check-ups may prevent side effects or catch them early so they can be managed. The first year may be difficult. You will have many doctor visits and lab tests. Taking your medicines, having monthly blood tests and watching for problems will soon become your lifelong routine. You will take up to 3 anti-rejection drugs by mouth every day. Your transplant doctors will tell you which drugs are best for you. They will explain the side effects and tell you how to manage them. It is very important for you to take part in your post-transplant care. Please stay in contact with your transplant coordinator. This will likely improve your long-term outcome. Your anti-rejection drugs may include: Transplant medicines • Cyclosporine A (CSA; Neoral, Gengraf) or tacrolimus (FK506; Prograf): You will need regular blood tests to check the level of medicine in your blood. Blood levels that are too high can cause side effects such as hand tremors, tingling or headache. Long-term use of this medicine can cause kidney problems. Your doctor will watch for this. After your transplant, the cells in your body that fight infection and attack foreign matter will • Azathioprine (AZA; Imuran): At first, AZA may cause your hair to thin. It can also decrease your Future dental work After your transplant, you will need to take antibiotic (germ-fighting) medicine before every dental visit. 14 white blood cell count. We may need to adjust your dose to maintain the right white blood cell count. Obstruction (blocked blood vessel or bile duct) This may occur right after transplant or many months later. It may or may not be very serious. • Mycophenolate mofetil (MMF; CellCept): MMF may cause diarrhea (loose, watery stools), nausea (upset stomach) and vomiting (throwing up). It may also decrease your white blood cell count. Your transplant coordinator will watch your lab results carefully. If there is a change in your results, he or she will tell you if blockage is a concern. • Sirolimus (Rapamune, rapamycin): This may raise your cholesterol and triglycerides (blood fats). It may also decrease your white blood cell or platelet counts. Rejection • Prednisone: In high doses, prednisone can cause slow healing. It can also cause increased appetite, weight gain, stomach irritation or ulcers, bloating, high blood sugar, bone and joint problems, sleeping problems, mood swings and depression. Most people do not take prednisone after leaving the hospital. If you are having a rejection, it is vital to catch it early. This improves the chances that the problem can be treated. You must send us your lab results regularly. If you do not, we will not know that you are having a rejection. A rejection may occur at any time. It is more likely to occur if you don’t take your medicines as directed. You may feel fine, but blood tests may show higher than normal liver function tests. Some people will have a low-grade fever. But only a liver biopsy will tell us for sure if you are having rejection. A liver biopsy is a simple test that can be done in the clinic. The transplant team often gets the results back on the same day. If you are thinking about having a baby, please talk to your doctor about your medicines. Possible complications after transplant While some problems might appear right after surgery, others may show up weeks, months and even years later. If you have a rejection, your medicines will be changed. If the rejection is severe, you may need IV medicine in the clinic. Infection The risk of rejection lessens with time, but it never totally goes away. As this risk decreases, so will your doses of anti-rejection medicines. Some medicines may be stopped entirely. You will notice that as your medicines decrease, most of the side effects will get better as well. Signs of infection include: • Fever over 101°F (38.3°C) under the tongue. • High white blood cell count. • Pain or redness at the incision or drain site. If you ever stop taking your medicines, your body will reject your new liver. This could be life threatening. Most infections can be treated with medicine from your doctor. If you get an infection, it may slow your healing process. Please call your transplant coordinator if you have symptoms of infection. 15 Organ failure Keeping track of your vital signs and lab tests Vital signs There is always a chance that your new liver will not work. Also, if a disease caused your own liver to fail, it may come back and damage your new liver. We will watch closely for this. You will need to check your vital signs regularly, both before and after your transplant. You should have the following items at home: Cancer • A thermometer to check your temperature. A high temperature or a fever is often a sign of infection. After your liver transplant, it may also signal rejection. Report any fever over than 101°F (38°C) (taken under the tongue) to your transplant coordinator right away. Taken over many years, your anti-rejection drugs may increase your risk of cancer, especially skin cancer. For this reason, you should cover up before going out in the sun or use a sun block (at least SPF 15). Do not use tanning beds. • A scale to check your weight. Your weight may go up or down a little each day based on fluid changes in the body. Your anti-rejection medicines may also increase your risk of lymphoma, a more serious form of cancer. You are at an even higher risk of you were exposed to the Epstein-Barr virus before transplant and become ill with it after. We will test your blood before your transplant to see if you are at a high risk. Those who keep smoking after transplant have a higher risk of lung, mouth, tongue and throat cancers. Again, if you are a smoker, stop. Talk to your family doctor if you need help with this. Many patients have a poor appetite right after surgery. Eating small meals often will help you get the calories you need to heal. Months or year later, you may find that you have a better than average appetite. It is important to avoid gaining too much weight. Some anti-rejection drugs can be hard on the kidneys. It is important to send us your lab results so that we can watch for changes. If your lab tests show kidney problems, we will change your medicines. • A blood pressure cuff. Many things affect blood pressure, including hormones, medicines, fluid in the body and how well your kidneys are working. Your family doctor will help you manage your blood pressure after your transplant. Please see your family doctor soon after you leave the hospital. Return once a year for a check-up. Psycho-social problems Lab tests Liver transplant is stressful for both you and your family. It may lead to depression, body image problems, money problems and troubled relationships. Your transplant care team and family doctor can help you deal with these concerns. For most blood tests, “normal values” vary from one lab to another due to different testing methods. The values listed here are current at the University of Minnesota Medical Center since 2001. Kidney problems Some values are “off ” or abnormal for persons with liver disease. You will get to know your own normal values, close to these ranges, after the transplant. For a few tests, normal values have not been established. 16 Hematology blood tests INR..............................................0.89 to 1.09 Hgb (hemoglobin).....................11.5 to 15.7 g/dl Factor V......................................70 to 130% Hct (hematocrit)........................35% to 45% Fibrinogen..................................170 to 370 mg/dl WBC (white blood count)..........4 to 11 x 103/mm3 Blood gases Platelets.......................................150 to 450 x 103/mm3 pH................................................7.35 to 7.45 Liver function tests p02...............................................85 to 105 mmHg PC02............................................26 to 40 mmHg AST..............................................0 to 45 u/1 HC03...........................................18 to 29 mmol/L ALT..............................................0 to 45 u/l Other tests Alk p’tase Albumin......................................3.3 to 4.6 gm/dl (alkaline phosphatase)...........40 to 150 u/1 Total protein...............................6.0 to 8.2 gm/dl Bilirubin direct (conjugated).....0.0 to 0.4 mg/dl Bilirubin total.............................0.0 to 1.3 mg/dl We are here to help 5’ Nuc..........................................0 to 12.0 u/l After reading this booklet, you may feel overwhelmed with new information. Try to remember that you will have more time to learn during the wait for your new liver. We will help you as much as we can. Electrolytes and blood chemistries Na (sodium)...............................133 to 143 mmol/1 K (potassium).............................3.4 to 5.5 mmol/1 You can reach your transplant coordinator by phone Monday through Friday, from 8:00 a.m. to 4:00 p.m. Also use your clinic visits to ask any questions you might have. C1 (chloride)..............................96 to 110 mmol/1 HC03 (bicarbonate)..................20 to 32 mEq/1 BS (glucose)................................60 to 115 mg/l00m1 Remember that you are a very important member of our transplant team. We expect to work closely with you to assure the best possible outcome for your liver transplant. BUN (blood urea nitrogen)......5 to 24 mg/dl Cr (creatinine)...........................0.4 to 1.0 mg/dl Ca (calcium)...............................8.7 to 10.8 mg/dl Contacting UNOS Phos (phosphorus)....................2.9 to 5.4 mg/dl UNOS (the United Network for Organ Sharing) directs who can receive deceased (non-living) donor organs throughout the United States. UNOS offers a patient service line to help you and your family understand transplant data and organ allocation. You may also call to discuss problems you may be having with your transplant center. Dial toll-free 1-888-894-6361. Mg (magnesium).......................1.6 to 2.3 mg/dl Coagulation tests PT................................................11.0 to 13.5 sec PTT..............................................23.0 to 34.0 sec TT................................................13.0 to 18.0 sec 17 The Transplant Center Phillips-Wangensteen Building MMC 482, Room 2-200 420 Delaware Street SE Minneapolis, MN 55455 612-625-5115 (transplant office) www.fairviewtransplant.org For informational purposes only. Not to replace the advice of your health care provider. Copyright © 1989, 2007 Fairview Health Services. All rights reserved. SMARTworks 520229 – REV 09/16.
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