Surgery. Patient Education. For a liver transplant

Transcription

1 Patient Education For a liver transplant We are all born with a liver that has many functions needed to sustain life. Yet, severe acute or chronic injury can reduce this function to the point where the liver is overwhelmed and begins to fail. When patients are diagnosed with end-stage liver failure this often means that the liver is operating at only 10 to 20% of normal. At this point, it is vital to preserve what little function is left by avoiding toxins such as alcohol, narcotics, or smoking, which can further compromise the remaining function.

2 Page 7-2 Patients can have a wide range of problems related to their disease, from mild fatigue to lifethreatening bleeding. Patients with liver disease may also begin to have symptoms of liver failure such as fluid (ascites) filling the belly, unclear thinking (encephalopathy) related to the build-up of toxins which affect the brain, or even life-threatening bleeding events. To treat these symptoms, you may be prescribed a diuretic that makes you pass water to reduce fluid in the belly; lactulose, a medication that gives you diarrhea and helps eliminate toxins from the bowel that affect your ability to think clearly; or a beta-blocker that lowers your heart rate. While frequent elimination, urination, or slowing of the heart rate may seem like unusual ways to control liver failure, they are vital lifelines. The sudden stopping of these medications without consultation with your doctor can lead to a rapid decline in health, admission to the hospital or even death. The bottom line is to always talk to your doctor prior to starting or stopping any medication.

3 Page 7-3 The Listing Process and Liver Allocation In the United States, the federal government sets standards for who can receive a liver transplant. As you may be aware, there has been a lengthy national debate about allocation of donor livers. The old system, based on the Childs Turcotte Pugh score, had been in place for many years. In essence, it divided patients with end-stage liver failure into two categories: those with moderate disease and those with severe disease. When a transplant became available, a patient from the severe disease list would receive an offer based on their waiting time on the list. Unfortunately, even among patients with severe liver disease there was a wide variation in severity, with some near death in the hospital while others were stable at home. Thus, a very sick patient who had little waiting time would have to wait months to years for transplant while someone who was less sick but with more waiting time was transplanted first. This emphasis on waiting time and lack of discrimination among the sickest patients was felt to contribute to the risk of dying while awaiting a liver transplant. This scope of symptoms reflects the many lifesustaining functions of the liver such as the production of bile, which aids in digestion, the creation of proteins, which allow the blood to clot and stop bleeding, and the ability to eliminate toxins from our body.

4 Page 7-4 To remedy these inequalities, a new system has been adopted by all liver transplant centers called the MELD score. It relies on three easy-to-obtain laboratory tests to determine the severity of liver disease (bilirubin, a measure of jaundice, INR, a measure of clotting function, and creatinine, a measure of kidney function). Unlike the Childs Turcotte Pugh system, the MELD score can vary from 6 to 40. Essentially, this creates a new liver allocation system where the sickest patient (highest MELD score) is offered an organ first. Waiting time is only a factor when there is a tie between two or more persons with the same score. At the patient level, one effect of this change is the need to obtain periodic blood draws to update your MELD score. The current criteria will require patients with a score of 10 or less to have their creatinine, INR, and bilirubin checked yearly, a score of 11 to 18 every 90 days, a score of 19 to 24 every 30 days, and a score of 25 or greater every 7 days. If we do not receive blood tests in a timely manner this will jeopardize your standing on the liver transplant list and

5 Page 7-5 could mean that you could miss a life saving opportunity. Your doctor may also order blood tests prior to this mandatory interval due to concerns that your liver disease is worsening and results may affect your MELD score. Therefore, you need to remind your clinical lab and doctor that all new laboratory results should be sent promptly to your transplant coordinator. Please note that as your MELD score changes, either up or down, your mandatory lab test interval may become more or less frequent. We will make every effort to contact you when there is a change in this test interval to ensure that your labs are obtained in a timely manner. Sadly, some patients listed for liver transplant may deteriorate or even die prior to making it to transplantation. Nationally, this number may represent up to 10% of patients on the list. This underlines the importance of maintaining contact with your doctor to prevent a health event, which could prevent you from being transplanted.

6 Page 7-6 Waiting for Your Transplant Once you are accepted and listed by our transplant program, we need to establish a reliable way to contact you. Some prefer a beeper, others a cell phone, or a traditional home phone. If you plan to be out of town or on vacation, notify your coordinator and give them the number(s) where you can be reached. A patient has missed a life-saving opportunity because he or she could not be reached! Be sure to give updated contact numbers to your coordinator, as needed. One day, hopefully soon, you may receive a call or page from our center to come in for your transplant. We will try to give you as much time as possible to get here in a timely but unhurried manner. Most patients have about 6 to 10 hours notice and will be given a specific time to arrive at University of Washington Medical Center for check-in. Be sure to have a travel plan mapped out beforehand. For example, identify a person who can drive you to Seattle from Spokane in the middle of the night or find out when flights are available to leave from Anchorage to Seattle. Some patients even have a bag packed ahead of time. From

7 Page 7-7 time to time, we may need to call you in as a backup candidate for another transplant recipient or cancel your case at the last minute due to problems with the donor liver. We realize this is both stressful and in some cases a financial burden. However, even if you don t receive a transplant this time, it does mean you are very close to receiving a transplant in the next several weeks. So, please bear with us. The Day of the Transplant Once you arrive at the hospital, you will be told where to check in. Most patients come to the transplant unit on 4-Southeast. There, we will quickly get you settled. The nurses will draw over 10 tubes of blood for both testing and storage. A member of our team will perform a brief history and physical exam. You will then be sent down for a chest X-ray. Lastly, you will receive an enema and take a shower with an antibacterial soap. Sometimes we find patients have flu or a finding on their chest X-ray or heart tracing that is new from their last exam. When this happens, your transplant may be cancelled until we can work up this new problem. Even if this happens, you do not lose your

8 Page 7-8 place in line on the list for a new liver. Above all else, we want to make sure you are in the best possible shape to undergo a liver transplant as safely as possible. When we are sure about the timing and quality of the donor liver, you will be brought down to the operating room on the second floor. Your family can come down with you and then be escorted to the surgical waiting room. Family members are not allowed in the operating room. The surgical team consists of the attending transplant surgeon, the liver transplant surgery fellow, a scrub nurse, two anesthesiologists, a perfusionist, and a circulating nurse. Soon after entering the operating room, the anesthesiologist will get you off to sleep. The next thing you will remember is waking up in the ICU after the transplant. Once you are asleep, the anesthesiologist will place a number of tubes, lines, and alarms needed to safely monitor you throughout the case. Some of these lines include special IVs placed in your neck and arms; you will have many other tubes

9 Page 7-9 placed in your body as well. Usually, once the donor liver arrives at the hospital, the surgeon and the operating team will begin the operation. The Operation A straightforward liver transplant operation can take anywhere from 5 to 8 hours. However, you may be in the operating room for up to 12 hours. This includes the time it takes the anesthesiologist to prepare you for the operation as well as transport you to the ICU after the operation. The surgeon will try to get updates out to the family as we proceed and will be out to talk with them in person when the procedure is complete. A liver transplant operation can be divided into three phases. The first phase is the removal of your diseased liver. The liver lies in the right upper part of your abdomen underneath the lower ribs. To do a safe transplant, we need to make a large incision beneath the ribs (see illustration on next page).

10 Page 7-10 Incision for Liver Transplant The liver has 4 connections that need to be divided before removal. These include: 1 and 2. The vena cava, which is the big vein that drains blood from your legs and kidneys and actually passes through the liver to return blood to the heart. To remove the liver, this large vein must be divided above and below the liver. 3. The bile duct, which carries bile from the liver to the bowel to help absorb fat in the food you eat.

11 Page The portal vein, which collects all the blood from the bowels, pancreas, and spleen, and then channels it through the liver before returning it back to the heart. This is the main blood supply to the liver providing almost 80% of the blood entering and nourishing the liver cells. 5. The hepatic artery, a very small vessel that supplies only 20% of the blood entering the liver, but is very important since the bile ducts in the liver receive their nourishment from this artery

12 Page 7-12 While the new liver is being sewn in, almost half the blood that normally returns to the heart is clamped off. In rare circumstances, this clamping can lead to low blood pressure or other difficulties with your heart. To get around this problem, we will make 2 additional incisions in your right groin and left armpit over 2 large veins. A tube is then placed in these 2 veins and connected to a pump. This is called venoveno bypass. It allows blood to flow around the site where we are working, returning a normal blood volume back to the heart. Once the liver is sewn in, these tubes are removed and blood flows normally back to the heart. The new liver is then sewn in, reconnecting the 4 vessels that have been disconnected. This process occurs in 2 phases. Once the vena cava and the portal vein are reconnected, blood flow can be restored to the liver. After this, we reconnect the small hepatic artery and finally the bile duct. Once we are satisfied that blood is circulating well in the liver and there is minimal bleeding, 1 or more drainage

13 Page 7-13 tubes will be placed near your liver and brought through the sides of your abdomen. These tubes remain only a few days to collect any residual blood or fluid in the abdomen and then are removed at the bedside. At the completion of the transplant, the surgeon and anesthesiologist will help transport you to the ICU on the 5th floor of the hospital. You will initially be kept asleep and on a breathing machine from 12 to 48 hours after the operation. Once the surgical team is satisfied that there is no significant bleeding, your new liver is functioning well, and you are breathing well on your own, we will take you off of the respirator. We will then proceed with removing all the tubes and monitors that were placed for the operation and transfer you back to the regular hospital floor on 4-Southeast.

14 Page 7-14 The Hospital Stay and the Clinic Follow-Up Most patients will be in the hospital for about 7 to 14 days. If you have any complications, your stay will likely be longer. During your stay, we will work with you on several issues. After a major operation, it is very important to start moving and getting out of bed. The nurses and physical therapists will work to help you with this until you are comfortable with walking on your own. Walking as much as possible in the hospital is perhaps the single most important way to get rid of the effects of anesthesia and to return back to normal as soon as possible. The pharmacist will also teach you to identify and arrange a mediset (a box that holds your medications) for the 10 to 15 medications you may be on after the transplant. Your pain will be managed early on after the transplant with IV pain medication. Once you are eating well, this will be switched to pills. Most patients are off all oral pain medication by 3 weeks after the

15 Page 7-15 transplant. Sometimes, we obtain a liver biopsy prior to discharge from the hospital to check for early rejection. You will be ready to leave the hospital when you are walking, eating, drinking, comfortable with your medications, and have friends and family able to care for you. This can be a stressful time for you and your family. We strongly suggest that your support person is available several days before discharge to learn about your medications and talk to the doctors. This helps make the transition out of the hospital much smoother. Once you are out of the hospital, you will need to return to Transplant Clinic and have your blood drawn for testing at least twice a week. During the first 3 months post-transplant, the Transplant Team will assume all aspects of your medical care and if you have a medical problem, we can be reached by phone 24 hours a day, 7 days a week for consultation. Between the first and second month, you may need to come to clinic once a week and have labs drawn 1 or 2 times a week. Into the third month, we may only need to

16 Page 7-16 see you every other week. Around 3 months post-transplant, if things are going well, we will obtain another liver biopsy and then transition you from our clinic back to your primary care doctor. Once you have graduated from transplant clinic, your primary care doctor will once again assume control of your care but may consult with us from time to time. We will then plan to see you back 6 months posttransplant, one year post-transplant and then yearly. These follow-up visits are very important and allow us to maintain the long-term stability of your transplant. What has been described above is an ideal hospital stay and routine clinic follow-up. About 40% of all liver transplant recipients have an ideal course. On the other end of the spectrum are the 10% of patients who experience an extremely difficult course. In the middle of these two groups are the roughly 50% of all liver transplant patients who have at least one major complication. The good news for the great majority of patients is that even though they may experience a complication, it is identified and remedied. Usually, by 3 months posttransplant, they have caught up to those who have had no issues at all.

17 Page 7-17 Complications A liver transplant operation is a complex process that requires several hundred steps, all of which are vitally important to achieve the desired final outcome. While the list of potential complications could fill many pages, thankfully, most are quite rare. A surgeon often looks at the risks of an operation as a spectrum ranging from the most severe, dying, to more common problems such as rejection or readmission for fever. One of the reasons that you have had to undergo so many tests beforehand is to reduce the risks of developing a severe complication such as heart attack, stroke, or death. Yet, despite all of these tests, it is important to be aware that these things can and do happen. During the first 24 hours after the operation, we worry most about bleeding and the function of the graft. Some transplants can be performed with almost no blood loss while others may require 10 or more units of blood. If there is evidence of ongoing bleeding after transplant, we may need to return to the operating room to remove the clot and stop the bleeding. Patient Timeline Events and Post- Operative Days (PODs) from Day of Transplant DAY 0 Liver Transplant Operation DAY 10 Discharge from Hospital DAY 11 Clinic Visits (You will have a varying number of clinic visits between Day 11 and Day 90) DAY 90 Check Out of UWMC to Primary Physician 6 MONTHS Long-Term Follow-Up Appointment with Transplant Hepatology 1 YEAR/ YEARLY Long-Term Follow-Up Appointment

18 Page 7-18 Much more rarely, about 1 to 2% of cases, a liver may function poorly requiring retransplant. If that were to happen, we would do everything in our power to find a new liver immediately. While any of the 4 anastomoses (connections) of the new liver can develop a complication, the most common problems occur with the 2 smallest vessels, the bile duct and the hepatic artery. The hepatic artery supplies blood to a very specific part of the liver: the bile ducts. If the artery were to clot off after surgery, the bile ducts atrophy and bile cannot get out of the liver leading to poor liver function, infection, or even a need for retransplantation. Early on after transplant, we will check the artery by ultrasound to ensure it is flowing well. If there were a concern, we would need to take you back to the operating room to remove the clot and repair the artery. The bile duct can either scar down, leading to an obstruction of bile flow, or leak, spilling bile into the abdomen. Most bile duct problems can be remedied without surgery. At times, a small number may require repair surgery.

19 Page 7-19 Immunosuppression Your immune system helps fight off infection. It does this by recognizing self (your own cells and proteins) versus nonself (those things that are foreign to your body). Anything your immune system deems non-self, such as a virus or bacteria, is attacked and destroyed. Much like an invading bacteria or virus, your new liver is recognized as non-self and is attacked by your immune system. This process is called rejection. To control this response, we need to inhibit your immune system. This is done with 3 main immunosuppressive medications: steroids or predisone, mycopholate, or MMF, and FK 506 or tacrolimus. These medications all have side effects and require additional medications to control them. The bottom line is that most transplant patients take about 10 to 15 medications anywhere from 1 to 4 times a day. Early on after the transplant, this can be a handful of pills every few hours. Over time, the number of drugs is tapered down, first at 3 months and again at 6 months.

20 Page 7-20 Usually by 1 year, your drug regimen is down to 5 or 6 drugs and remains stable over time. You will take immunosuppressive drugs for the rest of your life. If you stop your medications, your immune system will once again resume its function and reject your liver. The monitoring and treatment of rejection is part of your care after transplant. Most patients who have rejection are never even aware of it. The discovery is usually made on the basis of routine blood tests before there are any symptoms. This is followed up with a liver biopsy to confirm the diagnosis. It is very rare to lose your liver to rejection. However, if left untreated, it can lead to permanent liver damage affecting the longevity of the graft. Despite advances in our knowledge of immunology, rejection is still a common event with up to 30% of all transplant recipients experiencing at least one episode in the first year. Most of this rejection is mild and can be treated with additional steroids or dosing of medication.

21 Page 7-21 Complications of Immunosuppression As you might imagine, suppressing the immune system can make your body more susceptible to infections. There are certain types of bacteria, viruses, and fungal infections that occur in the immunosuppressed person, which do not affect the immunocompetent. While there is no way to completely protect you from infectious complications, there are things that can be done to greatly reduce the risk. Certain bacteria are carried on raw or uncooked food and our dietitian will teach you about foods to avoid. Certain occupations or hobbies lead to exposure of airborne particles that carry fungal spores. With consultation of the occupational health service, we can work out solutions to greatly decrease this risk. In contrast, we do not feel that patients need to wear paper masks, which offer little or no protection from environmental exposures. However, we strongly recommend good hand washing throughout the day. Almost 80% of the germs we are exposed to come from hand contact and these can be easily eliminated with soap and warm water.

22 Page 7-22 In addition to fighting infection, the immune system has a role in tumor surveillance. With a suppressed immune system, you will be at an increased risk of developing certain types of cancers such as skin cancer, sarcomas, or a blood cancer called PTLD or post transplant lymphoproliferative disease. While the lifetime risk of any one of these occurring is only 1 or 2%, it reinforces the importance of maintaining close contact with your primary doctor so he or she can biopsy or remove any unusual new skin bumps or masses. Patient and Graft Survival After Transplant Once a patient is diagnosed with endstage liver failure the natural history of that diagnosis is progressive deterioration and decompensation and is ultimately 100% fatal. If you compare the natural history of liver failure to that of liver transplantation, your odds of survival with a good quality of life are substantially increased with transplantation. Currently, the 1-year

23 Page 7-23 survival after liver transplant is roughly 85 to 90% and the 5-year survival is 65 to 70%. After 5 years, survival drops a few percentage points a year. If you look at why patients die after transplant, it usually falls into these categories: - Progression of other diseases patients had pre-dating the transplant such as heart disease. - Infectious complications related to immunosuppression. - Recurrence of their liver disease in the transplanted liver (such as Hepatitis C). - Cancer risks. However, there are many patients transplanted at our program who continue to do well 10 or more years after transplant. While no one knows the potential life span of a liver graft, worldwide there are even a handful of patients who are approaching their third decade post-transplant.

24 Page 7-24 Some Final Words The relationship between a liver transplant recipient and their program is similar to a marriage and at the heart of any successful union is communication. After reading this section, we hope you can begin to grasp the complexity of the transplant process. This requires that the patient, their coordinator, and their doctors can speak freely. If you or your family find yourself becoming frustrated, it is important to let us know how you feel so that we can remedy the situation. Unfortunately, at times, this relationship may be inherently one-sided. During the work up, we may require you to undergo a long series of tests or interviews, some of which can be both physically and emotionally painful. Yet, it is important to realize that we do this with one mission in mind to lead you through this difficult process in order to give you the best opportunity to achieve a higher quality of life.

25 Page 7-25 Notes

26 Page 7-26 Liver Transplant UWMC 4 SE Day 1 4 SE Day 2 4 SE Day 3 Transfer from ICU Physical Activity Discuss activity Transfer to the chair Walk 3 times today goals with physical with help (with PT, nurse, or therapist (PT) Transfer training and hospital aide) Transfer to the chair walk with PT Strengthening with help Strengthening exercises with PT exercises with PT Daily Living Discuss self care of Bathe and groom Bathe and groom daily living with with help with help occupational Strengthening Strengthening therapist (OT) exercises with OT exercises with OT Transfer to toilet and shower with help Diet Take liquids Eat regular meals Eat low-sodium, Pass gas regular, or diabetic meals Have bowel movement Education Review CareMap Identify Transplant Perform wound Present to RN: Coordinator and drain site Transplant book Name: observation Blood pressure Begin observation of Take and record: machine wound and drain Temperature Thermometer sites Blood pressure Discuss: Take and record: Weight Pain control Temperature Learn diabetic care Use of incentive Blood pressure with clinical nurse spirometer Weight specialist (if needed) Wearing TED Study Your Study Your hose Transplant Guide: Transplant Guide: Medical Log Discharge Evaluate self care Continue to plan Planning ability and safety for local housing with PT and OT Evaluate with social worker: Care provider/ support person Home care needs Local housing and transportation

27 Page 7-27 Patient CareMap 4 SE Day 4 4 SE Day 5 4 SE Day 6 4 SE Day 7 Discharge Walk 3 times today Walk in hallways by Walk in hallways by Walk in hallways by (with PT, nurse, or self several times self several times self several times hospital aide) Discontinue TED Perform home Perform home Strengthening hose when walking exercise program exercise program exercises with PT Learn home exercise with PT with PT program with PT Shower or bathe and Shower or bathe, Transfer to toilet and Demonstrate home groom with help dress, and groom shower by self exercise program Strengthening with little or no help Shower, dress, and with OT exercises with OT Learn home exercise groom by self program with OT Perform home exercise program with OT Eat low-sodium, Eat low-sodium, Eat at least 75% Eat at least 75% regular, or diabetic regular, or diabetic of each meal of each meal meals meals Normal bowel Normal bowel Have bowel Normal bowel movement pattern movement pattern movement movement pattern State understanding State understanding Nutrition education of nutrition plan of nutrition plan session with dietitian Learn medication Take SAM with Take SAM with Take SAM with pharmacist nurse nurse independently Fill Self-Administered State: Review learning State: Medication (SAM) Methods to prevent with nurse Signs and box with pharmacist infection Schedule follow-up symptoms for Begin SAM with Activity limitations care at Diabetes Care contacting pharmacist after discharge Center (if needed): transplant Continue to learn General health DATE coordinator diabetic care (if guidelines TIME Time and date of needed) Demonstrate diabetic StudyYour follow-up clinic Study Your care (if needed) Transplant Guide: appointments Transplant Guide: Study Your Nutrition Medications Transplant Guide: Care After Leaving the Hospital Review home Finalize discharge Receive information DISCHARGE! equipment needs for plans: and equipment for mobility and self care Destination home safety with PT and OT Transportation Demonstrate use of Home care needs home equipment for safety and activity with PT and OT

28 Page 7-28 Questions? Your questions are important. Call your transplant coordinator during business hours. Liver Care and Transplantation Notes Liver Care and Transplantation Box N.E. Pacific St., Seattle, WA University of Washington Medical Center 06/2003 Rev. 05/2005 Reprints: UH1914