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Table of Contents Introduction Normal Liver Function Symptoms of Liver Disease Cirrhosis Complications of Cirrhosis Liver Transplant Program Evaluation Selection Process Wait List Waiting Period Liver Transplant Options Organ Offer Day of Transplant Surgery Medical Risks Post Surgical Care and Recovery Hospital Stay Discharge/Rehabilitation Transplant Resources 2 Introduction You have been told that you need or may need a liver transplant. Before you become eligible to receive a transplant you must learn about the procedure, understand the commitment involved, and realize that not everyone in need of a liver transplant will ultimately obtain one . The num ber of liv er transplant procedures performed in th e United States is l imited by the number of donor organs available. Th ere are many more people who need liver transplants than there ar e organs available (~17,000 patients on the waiting list with only ~4500 d onors/yr). Living donor transplants may help make up some of the shortfall in liver donors but is only possible in a very small number of adult patients needing liver transplants. Selection of patients for transplantation is a complicated process that attempts to place organs in suitable recipients on the basis of n eed, medical urgency and likelihood for survival. Before you start your evaluation, we would like you to becom e more familiar with the evaluation proc ess. This h andout will provide you with additional infor mation about the transplant evaluation process, the transplant procedure, and what to expect after the actual transplant. Liver transplantation is not a cure. A transplant provides a chance to prolong your life and to improve your quality of life. Unfortunately, you may be exchanging new symptoms and pr oblems for your old symptoms and problems. You m ust realize that you wi ll be taking medications for the rest of your life. This is probably the most important decision that you will make in your lifetime. Try to learn as much as you can, review the information we give you, and ask questions when you do not understand. Making sure that th e patient is a suitab le transplant candidate is crucial to the success of the tr ansplant and a posi tive outcome. We know that the evaluation process can be extensive and extremely stressful for ill patients, and their families and friends who support them, so our goal is to make the process as smooth as possible. 3 Normal Liver Function The liver is the largest organ in the body, weighing about 3 pounds. The li ver is an active organ responsible for many vital life functions. The primary functions of the liver are: Bile production which aids in the digestion and absorption of fats Distribution of the nutrients found in food Excretion of bilirubin, cholesterol, hormones, and drugs Metabolism of fats, proteins, and carbohydrates Enzyme activation Storage of proteins, vitamins, and minerals Synthesis of plasma proteins, such as albumin, and clotting factors, and It helps “clean” the blood by removing medications and toxins. Due to these important activities, the liver is exposed to a number of insults and is one of the body's organs most subject to injury. Symptoms of Liver Disease The symptoms of liver disease include: jaundice (yellowing of eyes and skin) severe itching dark urine mental confusion or coma vomiting of blood easy bruising and tendency to bleed gray or clay-colored stools abnormal buildup of fluid in the abdomen Cirrhosis When the liver is damaged it attempts to repair itself (regeneration). During the repair process, scar tissue ( fibrosis) may develop. Over time, the scar tissue increases to the point where it surrounds entire areas of liver. When l arge portions of the liver are surro unded by scar tissue, cirrhosis is said to be present. Thus, cirrhosis is the end result of the liver attempti ng to repair itself. While some patients with cirrhosis have near normal liver function, most will ultimately experience a variety of probl ems. Many of thes e problems (for example, esophageal varices, s plenomegaly, ascites, encephalopathy), develop as a result of the way cirrhosis changes blood flow through the liver. Complications of Cirrhosis 1. Esophageal Varices Definition: Esophageal varices are the enlarged veins (varicose veins ) located in the l ower end of the esopha gus (swallowing tube). These veins develop because cirrhosis blocks blood fro m flowing freely through the liv er. Once the blood is blocked from flowing through the liver, it must find another way to return to the heart. Th e veins surrounding the esophagus and stomach provide a pathway f or blood to return t o the hear t. Over ti me, these veins become larger and develop into varicose veins or varices. The enlarged v eins surrounding the esophagus are esophageal varices, and the veins surrounding the stomach are gastric varices. If the pressure within these v eins becomes high enough the veins can rupture, leading to life threatening bleeding. Symptoms: Bleeding from varices is generally brisk and associated with symptoms. The most frequent s ymptoms include: weakness, light-headedness, nausea, vomiting of blood or c offee colored material, and pas sage of bowel movements that ar e bloody or black (like tar). Bleeding from varices represents a life-thr eatening medical emergency. If you develop signs of bleeding, you should call 911 or someone should take you to the nearest hospital immediately. Prevention: Variceal bleeding may be prevented by the administration of medications which reduce pre ssure within the por tal vein and within the varices. Beta-blockers (propranolol or nadolol) are the drugs most often used. When these are given it slows the heart rate. A us ual target heart rate for cirrhotic patients on beta-blockers is 55-60 beats per minute. Treatment: Endoscopic Therapy: Bleeding from esophageal varices can usually be stopped with endoscopic th erapy. The endosc ope is a fl exible lighted instrument that is inserted th rough the mouth in order to examine the esophagus, stomach, and small intestine. In pa tients with ble eding varices, the bleeding can usually be stopped with sclerotherapy (injection) or rubber band ligation. 2. Ascites Definition: Ascites is the fluid that accum ulates in the abdominal cavity as a consequence of cirrhosis. Symptoms: Pain in the abdomen, abdomi nal distention, loss of appetite, back pain, shortness of breath, fluid retention, and leg swelling. Treatment: Salt restriction and diuretics are the primary treatment. When salt restriction alone is ineffective, patients are treated with di uretics (water pills) such as spironolactone (Aldac tone) and/or furosemide (Lasix ) or torsemide (Demadex). When di uretics are ineffective, patients may need to have the fluid removed by placing a needle into the abdominal cavity (paracentesis). 5 3. Spontaneous Bacterial Peritonitis (SBP) Definition: SBP is an infection within the ascites fluid. Symptoms: Increased ascites, abdominal pain, fever, confusion (worsening encephalopathy). Treatment: Intravenous antibiotics. Prevention: Oral antibiotics may prev ent episodes of sponta neous peritonitis. Preventive antibioti cs are recommende d for patients with severe ascites and for those who have experienced a previous bout of peritonitis. 4. Splenomegaly Definition: Splenomegaly is an enlargement of the spleen and occurs in patients with cirrhosis. It is caused by blood backing up i nto the spleen as a result of the elevated pressure within the liver. Symptoms: Enlargement of the spleen generally occurs without any pain or discomfort. Some pa tients will be able to feel the spleen in the left side of the abdomen. Platelets and white bloo d cells can become trapped within the enlarged spleen leading to abnormally low platelet and white blood cell counts. L ow platelet counts c an lead to bleeding problems; low white bloo d cell counts may cause problems with infections. Treatment: No trea tment is required for splenomegaly due to cirrhosi s. The problem is in th e liver, not the sp leen. Surgic al removal of the spl een rarely helps and is not necessary. 5. Hepatic Encephalopathy Definition: Hepatic Encephalopathy is a brain dysfunction ca used by the accumulation of toxic chemicals in the blood stream. The normal liver acts as a filter removing harmful substances from the blood. With cirrhosis the liver is not able to remove a vari ety of toxic chemicals. These chem icals remain i n the blood and eventually enter the brai n, causing a variety of disturba nces with brain function. The toxin most easily identified is ammonia. Symptoms: Fatigue, sleepiness, conf usion, depression, irritability, personality changes, forgetful ness, slurred speech, tremors (shakes), and problems with balance may occur. As the condition worsens, patients bec ome drowsier and eventually lapse into a coma. Some patients with encephalopathy develop a peculiar odor on their breath (fetor hepaticus ) from the toxins. Treatment: The toxins are produced in the i ntestine by bacterial metabolism of protein. The following therapies help reduce the levels of 6 ammonia and other toxins. a) Laxatives. The longe r material remains in the colon the more toxins that are produced; thus, constipation must be avoided. We recommend that people with enc ephalopathy have at least 1-2 bowel mov ements each day. Lactulose (Chronul ac, Duphalac) is the preferred agent because it clears more ammonia from the intestines than other laxatives and also works to keep the bow els moving. Lactulos e causes abdominal bloating and leads to increased intestinal gas. It is easier to take when mixed with juice. b) Avoidance of Medications. Certain medications may increase the brain’s sensitivity to ammonia and other to xins. These medications include sedative drugs (e.g., Valium, A tivan, Xanax), pain medicatio ns (e.g., Darvocet, codeine, Vicodin, Percocet, Demerol), anti-nausea agents (e.g., Phenergan, Compazine), and anti histamines (e.g., Be nadryl). These medications s hould not be taken unless you check with your physician. 6. Hepatocellular Carcinoma (Liver cancer) Cancer of the liver (hepatocellular carcinoma, HCC, or hepatoma) can occur as a complication of cirrhosis from any cause. Some types of cirrhosis are more likely to be associated with hepatocellular carcinoma (HCC) than others. Patients with cirrhosis caused by hemochromatosis, al pha-1-antitrypsin deficiency, and those patients with cirrhosis caused by long-sta nding infection with he patitis B a nd C viruses are at the greatest risk. In patien ts with cirrhosis due to hepatitis C, for instance, the risk of developi ng HCC ranges between 1.5-6% per year. Thus, 1 0 years after being diagnosed with cirrhosis a patient with chronic hepatitis C has somewhere between a 15-60% of developi ng HCC. Men are more likely to develop HCC than women, drin kers more likely than non-drinkers, and s mokers more likely than non-smokers. Liver Transplant The information in this section, disc ussions with your physicians and other members of the transplant team , and written material from the program ar e all intended to give you the information necessary t o assist you in making an informed decision regarding the risks of liver transplantation. Please ask questions about anything that you do not understand. You are fr ee to change your mind and withdraw your consent at any time prior to the transplant. 7 Evaluation Most evaluations are conduc ted on an ou tpatient basis over two or three days. You will be evaluated to determi ne the medical appropriateness of a transplant. The work-up is designed to: 1) determ ine whether you need a trans plant, 2) detect problems which might complicate the transpl ant, 3) determine whether you have other c onditions which make transpl antation impossible. The evaluation consists of the following tests and procedures: 1. Blood tests will help determine the extent and/or cause of your liver disease. Other tests performed will be blood type f or organ matching and screening for the immunity or presence of specific viruses, including HIV. 2. A chest x-ray helps your physician rule out pneumonia a nd identify any problems with your lungs. A chest x- ray (CXR) is a painless, three-minute procedure, which tak es an internal pict ure of your chest including the l ungs, ribs, heart, and the contours of the great vessels of your chest. A chest x-ray can aid in diagnosing infection, collapsed lung, hyperinflation, or tumors. 3. A urine test is used to screen for the presen ce of drugs and alcohol in your system. 4. An echocardiogram and EKG will show how well your heart is beating and the function of your heart valves. This will assist yo ur physicians in deciding i f your heart function is strong enough for transplant surgery. An echocardiogram is an ultrasound of the heart. It examin es the chambers, valves, aorta, and the wall motion of your heart. It is also performed to evaluate the impact of lung disease on the mechanics of your heart, providing information concerning the pressure in the pulm onary arteries (PA pressure). Thi s information is important in planning the exact approach during the transplant operation. 5. An ultrasound of your liver and abdom en helps assess the circulation to your liver. You may require frequent ultrasounds during your waiting period. 6. A CT Scan or an MRI determines the extent of l iver disease, the pres ence of any tumors, and verifies the circulation to your liver. The following tests are sometimes needed to complete your evaluation: 7. A Liver Biopsy is a procedu re which may be requeste d by your transplan t physician. During a liver biopsy a needle will be used to remove a tiny portion of your liver through a needle. This is an outpatient procedure. A micr oscope examination will provide information to your physicians regarding the nature and severity of your disease. 8. Pulmonary Function Tests may be required, especially if you are a smoker or have a his tory of lung disease. This is a breathing test to analyze your lung 8 capacity. Pulmonary Function Tests meas ure lung volume and the rate of air flow through your l ungs. Pulmonary function tests require that you perform a variety of breathing exercises by blowing into tube. The r esults of these exercises measure the progress of your lung dis ease. Please inform the respiratory technician before these test s if you are taking bronchodila tors or other inhaled medication. 9. Arterial Blood Gases (ABG) measure the amount of oxygen that your blood is able to carry to your body tissues. This is performed by placing a needle into an artery in your wrist. A small amount of blood is requi red. This procedure takes about 5 minutes. Any discomfort at the site where the needle was inserted will go away within a few minutes. 10. You will meet with members of the transplant team in the Clinic as part of the education and evaluation process. Transplant 11. The Transplant Social Worker will meet with you to evaluate your ability to cope wi th the stress of tran splantation and assess your ab ility to foll ow a rigorous treatment plan. 12. You will meet with a Transplant Psychologist/Psychiatrist to screen patients for possible issues that may interfere with the transplant success. 13. Every patient meets with a Registered Dietitian who performs a nutritional assessment and provides education to patients. 14. All patients meet with the Financial Counselor who will discuss the costs associated with your transplant and the cost of the medications. They will work with you to understa nd your insurance coverage. It is required that you arrange for payment of the costs that may not be covered by insurance. You may not be able to u ndergo a transplant if you have not made acc eptable financial arrangements for payment when a suitable liver becomes available. 15. The Nurse Coordinator will provide education regarding the trans plant evaluation process, listing for transplant, and patient responsibilities before and after transplant. This meeting is intended to provide you with an opportunity to ask questions and to become fully informed about the liver transplant process. 16. A Transplant Hepatologist is a physician who specializes in liver disease. The transplant hepatologist will conduct a full history and physical exam. He/she will also assist in the medical management of your liver disease and work with the transplant team to determine if you are medically suitable for a transplant. 17. Your Transplant Surgeon will conduct a physical exam. He will also meet with you and discus s the appropriaten ess of a transplant based on the 9 information obtained during your evaluati on. The surgeon will also discus s the significance of undertaking a liver transplant, along with the risks of the surgery and the possible complications after your transplant. Transplant Selection Process After the work-up ha s been completed a nd you have met with the key m embers of the transplant team, your case will be presented to the Tra nsplant Selection Committee. Base d on your tes t results a nd evaluations, the Committee will decide if you are an appropriate candi date for transplantation. The c ommittee may make any of the following recommendations: 1. you don’t need a transplant. 2. you are not a transplant candidate because of co-existing problems. 3. the committee needs more information. 4. the committee would like you t o be followed for a period of time (generall y 6-12 months) before being placed on the waiting list. 5. you are an acceptable candidate and c an be placed on the transplant waiting list immediately. You will not be placed on the waiting list until you hear from us telling you that you have been accepted. You will receive a written letter confirming your status on the waiting list. Once you are listed, you will be followed cl osely. The success of liver transplant is dependent upon the maintenance of a heal thy lifestyle. You must remember: 1. No alcohol. Alcohol i s very toxic to the liv er. You will not be e valuated or listed for transplant until you have been abstinent for at least 6 months. You may be asked to submit to r andom testing for alcohol. We may require that you a ttend AA or a simila r alcohol treatment program. If we detect that you are drinking, you will be taken off the list and not transplanted. 2. Smoking. Smoking is strongly discouraged. It is important to kn ow that the longer the time betw een smoking cessation and transplantati on the better . Continued smoking leads to more complications after surgery, such as cancer or blotting of your blood vessels, and reduces your chances of surviving. 3. No illegal drugs. You will be drug tested and if illegal or un-prescribe d drugs are detected, i ncluding marijuana, you will be taken off the list and not transplanted. 4. Compliance is critical, because it is import ant to m aintaining you’re you r health and the health of your transplant ed liver. You will be instructed on how to tak e your medications , and tol d when you w ill need to return for appointments. It is expected that you will follow the inst ructions we give 10 you. If you repeatedly do not follow our management instructions, you will not be transplanted. 5. Social Support is necessary. Immediately after the transplant you will need to rely on your family and friends for help. If you do not have adequate support from your family or friends, you may not be transplanted. Waiting List The liver transplant waiting list is a co mputer list maintained by UNOS (United Network for Organ Sharing). The determination of who gets a liver is based on a formula that takes i nto consideration lab values s uch as: cr eatinine, total bilirubin, and INR (a measure of blood clotting). UNOS will then assign a model for end-stage liver disease (MELD) score based upon these values. The higher the MELD score the sicker the patient, and th e higher on the transplant waiting list. Livers are only match ed for blood type (A, B, O, AB) a nd size (the liver must fit into the body). Unli ke other organs, spe cial tissue typing is n ot necessary to determine which liver donor makes the best match. The MELD score assigned to eac h patient is re-assessed and re-certified by the transplant coordinator in accordance with the following UNOS schedule: Adult Patient Reassessment and Re-certification Schedule Status 1 Status re-certification Every 7 days. MELD Score 25 or greater Status re-certification Every 7 days. Score <= 24 but > 18 Score <= 18 but >=11 Score <= 10 but > 0 Status re-certification Every 1 month. Status re-certification Every 3 months. Status re-certification Every 12 months. Laboratory values must be no older than 48 hours. Laboratory values must be no older than 48 hours. Laboratory values must be no older than 7 days. Laboratory values must be no older than 14 days. Laboratory values must be no older than 30 days. Once you are listed, we must be able to get in touch with you at all times. It is important to provide us with several contact num bers. If we can not fi nd you then we c an not tra nsplant you. If we need to contact you, we will call your home first. While on the waiting list you need to let us know if you have a problem or get admitted to the hospital. Patients on the wai ting list are seen in our clinic at least once every 6 mo nths. When you are ca lled in for your transplant we would like you here as soon as possible (if you live out of town, we usually have plenty of time for you to ge t here). Plan your trip ahead of time. Don’t wait for the phone call from the transplant center to find someone to drive you. 11 Waiting Period After you have been listed you will begi n the waiting period. This time varies depending upon orga n availability and the severity of your illness. During this time you will be see n in the tr ansplant clinic and you will nee d to have re gular lab work to maintain your position on the UNOS waiting list. It is very important that you contact ou r office with any changes such as your phone number, address, and insurance coverage. If you are hospitalized or your disease worsens, you must contact your coordinator. Any medical changes may alter your position on the waiting list. You will need to be available, by phone or pager, at all times so that when an organ becomes available you ca n be reach ed by your coordinator. You wi ll be required to come to University Hospital, St. Paul immediatel y. The transplant will usually occur within 6 to 12 hours of initial contact. A patient may wish to register at more than one tr ansplant center. However, each center may have certain requirements for placement on the waiting list. Patients should inform the centers they contact of their multiple listing plans. If a patient would like to change transplant centers, the patient may transfer his or her primary waiting tim e to the new c enter upon listing at that c enter. The patient would then c ontact their original center requesting re moval from that list. Liver Transplant Options There are more people waiting for live r transplants than ther e are avai lable livers. All patients accepted by a tran splant program are registered on the national organ transplant waiting list managed by UNOS (United Network for Organ Sharing). UNOS is a non-profit ch aritable organization which operates the Organ Procurement and Transplantation Network (OPTN) under federal contract. UNOS maintains a centralized computer network and the UNOS o rgan placement specialists operate the network 24 hours a day, seven days a week. Patients are prioritized on the waiting list based on several factors. Adult liver transplant patients are prioritized using the MELD system. (MELD = Model for End Stage Liver Disease). A higher score means th at you are sicker and you will be put higher on the list to get a liver. Additi onal information about the waiting list and UNOS can be obtained by logging on to www.unos.org. The current organ options available in Texas are outlined below. 1. Option 1 is an organ by standard allocation: If it is deter mined that you are a candidate for transplant y ou will be listed on the UNOS waiting lis t. You will be given a MELD score based upon the results of your blood work. In order to 12 maintain your UNOS listing, periodic blood tests will be required an d your medicines may be changed as needed to keep you in the best possible shape for a transplant. It is very important that you keep all your appointments and keep your lab testing current. When an organ becomes available, medical information is entered into the UNOS computer system and a list of potential recipients is generated. The transplant centers whose patients appear on the ra nked list are contacted. Your surgeon will consider the organ based upon established medical criteria, organ condition, recipient condition, patient av ailability, and or gan transportation. By policy, the transplant team has only one hour to make its decision. If an organ is declined it is offered to the next patient on the list until it is placed. 2. Option 2 is an extended criteria donor liver. There is a serious shortage of deceased donor livers. One way to incr ease the number of livers is to us e extended criteria donors. The m ost common reasons that donor livers fall into the category of extended criteria are listed below: The donor has a history of hepatitis C. When a donor has active hepatitis C, we will consider transplanti ng the organ into a r ecipient who also has hepatitis C. In all cases we will assess the donor liver prior to transplantation, sometimes with a liver biopsy, to e nsure that there is n o evidence of damage to the donor liver from hepatitis. The donor is an inactive carrier of hepatitis B. Any transplant patient who receives an inactive carrier of hepatitis B organ w ill require additional treatment after the transplant. An init ial three-dose treatment of hepati tis B immunoglobulin is administered and an oral anti-viral agent, Lamivudine, is used on an ongoing basis. The donor liver contains some fat (steatosis). The presence of fat in the liver is very common in the general popul ation and usually goe s unnoticed with no ill effects. Th is may prolong the ti me it takes for the donor liver to function optimally after transpl antation. For this reason these livers may not be suitable for some patients. The donor is from an older age group. (greater than 65 years) The natural life span of the human liver is not completely understood. We do know that livers from older donors m ay experience a delayed function aft er transplant. Every liver offered from an older donor is carefully evaluated by the surgeon prior to implantation. Donation after cardiac death. Cardiac death means that the donor heart has stopped beating prior to donati on. (The stan dard donor has been declared brain dead but the heart still functions). A liver from this type of 13 donor has an increased chance of dela yed graft function and complications of the bile duct passages. There are other reasons which would place a donated liver in the extended criteria category. Your surgeon will discuss the s pecific details of an extended criteria donor organ with you at the time the liver is offered. All extended criteria donor organs are reviewed by the surgeon pri or to implantation. The decision to accept a particular liver is based upo n your specific needs at the time the liver is offered. The transplant surgeon may advise you to consider accepting a liver from one of the above groups depending upon your situation. If you agree to be considered for an extended criteria donor liver you will remain on the UNOS waiting list. You will continue to be a candidate for a standard allocation donor liver; however, extended criteria d onor organs will often become available sooner . The deci sion to accept an extended criteria organ must be balanced with the risk of dying or becoming sicker on the waiting list. You will always have the option to de cline or to accept an extended criteria donor liver at the time it is offered. If you decline, it will in no way affect your status on the UNOS wait list. Organ Offer When a deceased or gan donor i s identified, an organ procurement coordinator from Southwest Tra nsplant Alliance accesses the U NOS computer. The UNOS computer matches e very patient on the l iver transplant waiting list agai nst the donor's characteristics. The computer then generates a ranked list of patients for each organ tha t is procured from th at donor in ranked order according to organ allocation policies. Factors affe cting ranking include blood type, size, length of time on the waiting list, distance between the pote ntial recipient and the donor, and de gree of medic al urgency as set forth by the MELD allocati on system. The organ is then offered to the transplant team of the first person on the list. Day of Transplant When you are selected as the recipient for an organ you will be called and you must come in to the hospital right away. If the organ is considered an extended criteria organ, your surgeon wi ll review this with you and assist you in making your decision. You always have the opti on to decli ne an organ and it will not affect your UNOS status. As soon as you arrive at the hos pital you will be admitted to the hospital. After hours you will enter the hospital through the Emergency Department. The coordinator contacting you will provide you with ex act instructions. You will have a bri ef exam, blood and urine tests, x-rays and an EKG. Y ou will rec eive 14 your first doses of anti-rejection medication. In s ome cases the donor organ is not suitable for transplantation and the transplant will be called off. The actual operation takes between 4-8 hours. Afterwards you will be taken to the SICU. Surgery If everything goes as expected, you will spend 1-2 days in the ICU and 5-10 days in the hospital. During your hos pital stay you will nee d to be monitored closely for signs of infection and rejection. If there are abnormaliti es in your blood tests we will do a liver biopsy to look for rejection. Most patients undergo several liver biopsies after their transpla nt. Mild e pisodes of rejection occur frequently and are usually easily treated with corticosteroids (i.e., cortisone or prednisone) or by adjusti ng your othe r anti-rejection medications . The medications you take to prevent rejection reduce your ability to fight infections. If you live more than 1 hour away from the hospital , we will ask that you stay nearby for 3-4 week s after you are disc harged. S ince you will not be strong enough to stay alone, a family member or friend will need to stay with you. Arrangements with family and friends must be planned ahead of time. During the transplant surgery you will be put under general anesthesia, whic h means you will be given drugs to put you to sleep, block pain, and paralyze parts of your body. You will also be placed on a machine to help you breathe. The Anesthesiologists will talk with you in more detail about the risk s of anesthesia. The transplant surgeon will m ake an incision in y our abdomen as large as necessary to remove your liver and impl ant the donated liv er. Through this incision your liver and gall bladder will be removed and a donated liver (without a gallbladder) will be placed into your abdomen. During the surgery you may require veno bypass. If required, your surgeon will place incisions in your underarm or neck and groin for the placement of tubes. These tubes will connect to a machine that will allow your blood to bypass your liver during surgery. The transplant surg eons will decide if this machine w ill be used based upon your condition. Drains will be put into your body to allo w fluids to be removed and to help you heal. A tube may be placed into the bile duct to keep it open while it heals. Special mechanical boots will be used to keep blood flowing through your legs to try to prevent dan gerous blood clots. You will be in the operating room for approximately four (4) to six (6) hours. Immediately Post-Transplant Once in the ICU, you will begin to wake u p slowly as the anesthetic begi ns to work its way out of your system. Initially , a respirator helps you breathe. It is connected to a tube that is pl aced in your windpipe. After you are fully awake and are able to breathe on your own, this tube will be removed. During the time 15 that the respirator is helping you breathe, your hands will be lightly restrained in order to prevent you from accidentally removing this tube. You will not be able to talk during this time, sinc e this tube is blocking your vocal cords. The nurses in the ICU wil l assist you in communicating. Also necessary during this initial recovery pe riod is a nasogastri c tube (NG tube). This is a small plasti c tube tha t is inserted throu gh your nose and the n passed into your stomach. During surgery it keeps your stomach empty of any res idual food you may have had prior to the operation, as well as intermittently removing the stomach juices that are normally produced. The s urgery causes your stomach and intestines to be “asleep” temporarily; therefore, it may take one or more days before you r stomach and intes tines are ready to rec eive food again. You will receive liqui d nutrition through a second t ube called a feeding tube . You will be allowed small amounts of ice chips in order to keep your mouth from feeling too dry. Once you have passed ga s or had a bowel mo vement, the NG tube will be removed. The feeding tube will be removed when you are able to eat enough. In order to empty your bladder , you will have a catheter that will drain urine from your bladder into a bag on the ou tside of your body. This is usually removed as soon as you are able to use the restroom. While in use, it hel ps us monitor how well your kidneys are functioning. Most transplant surgeons make an incision that is sometimes referred to as a “Mercedes” incision because it looks like an inverted “Y” or the Mercedes-Benz emblem. Occasionally, it may be necessary to plac e a drain i n your inci sion, which will be connected to a “grenade-like” bulb. This will drain off any excess blood or fluid that may accumulate. Several intravenous lines (IVs) w ill be needed to give you fluids and medic ations until you are able to drink and eat again. This IV line or “triple lumen” will often be placed in your neck or below your collarbone. This line may also be used to draw blood for the daily laboratory valves. Overall, those who have undergone liver transplantation say that there was not as much pain involved as they anticipated. We believe this is due, in part, to the type of incision that is ma de, plus the use of steroid medications . The steroids are given both during and after the surgery and as a res ult significantly decrease the internal swelling. By doing so, pain is lessened. Medical Risks of Transplant There are inherent ri sks in all s urgeries, especially surgeries conducted under general anesthesia. Most complications are minor and get better on their own. In some cases, the complications ar e serious enough to r equire another surgery or medical procedure. One year after tran splantation approximately 88% of liver transplant patients are living and approximately 81% are living after 3 years. 16 1. Pain. Immediately following the s urgery, you will experi ence pain. Most transplant recipients have a si gnificant reduction in pain thr ee weeks after surgery. Some people continue to have pain for a longer time. 2. Delayed Function. There may be a delay in the function of your transplanted liver. Such a delay may incr ease the l ength of y our hospital stay and increase the risk of other complications. 3. Primary Nonfunction. There is a rare possibili ty that the transp lanted liver will not function. When this occurs a second tr ansplant is needed. You will be placed on the UNOS waitlist in the highes t priority category allowed. If a second liver does not become available, death may occur. 4. Clotting/Stricturing. Hepatic artery thrombosis (clotting)/stenosis (narrowing) occurs in a small percentage of liver transplants . A hepatic a rtery thrombosis is a clo t that develops in the major bl ood vessel going to your liver. Hepatic artery thrombosis can cause two complications including liver abscess and/or biliary strictures. A hepatic artery stenosis is the narrowing of the artery that supplies blood to the liver. When this occurs, an angiogram is performed to assess the extent of the problem. Some times another surgery will be necessary to revise the area where the donor artery and the recipi ent artery are connected. In the w orse scenario the li ver may suffer irreversible damage from lack of blood flow requiring a second transplant. 5. Bile Leaks. Some transplant patients experience bile leaks. Bile is a secretion of the liver that aids in digesti on. Most bile leaks get better without the need for surgery. Occasionally, tubes need to be placed through the s kin to aid in the healing process. In some cases surgery is necessary to correct the bile leak. 6. Biliary Strictures (narrowing). Some tr ansplant patients ha ve a long term complication of biliary strictures. A biliary stricture is a narrowing of the ducts transporting bile. Some of the strictures can be repaired by non-surgical means such as the insertion of tubes, but some will require surgical repair. 7. Diarrhea. As a result of not having a gallbladder, some patients have periods of diarrhea and cramping. In the vast majo rity of cases this goes away after two or three months. 8. Blood clots. These clots us ually develop in the legs and can break free and move through the h eart to th e lungs. In the lungs, they ca n cause s erious interference with breathing whi ch can lead to death. Blood cl ots are treated with blood-thinning drugs that may need to be take n for an extende d period of time. 17 9. Bleeding. Bleeding during or after surgery may re quire blood transfusions or blood products. T he use of blood or bloo d products has th e following general risks: itching, rash, f ever, headache, or shock; respiratory distress (shortness of breath); kidney damage; system ic infection; exposur e to blood borne viruses including hepatitis (an inflam matory disease affecting the li ver), and Human Immunodeficiency Virus (HIV, the virus that causes AIDS); and death. The risk of getting the HIV virus and/or he patitis C is approxima tely 1 in 2 million per unit transfused. The risk of getting hepatiti s B is approximately 1 in 100,000 per unit transfused. In rare cases, blood transfus ions (usually multiple tr ansfusions) can adversely affect a person’s ability to receive future organ or bone marrow transplants. 10. Infection. The risk of infection including urinary tract infection is higher for transplant recipients than other surgical patients because the treatments needed to prevent organ rejection make the body less capable of fighting infection. Also, liver disease itself decreases the body’s ability to fight infection. The abdominal incision for the l iver transplant and any incision needed for the liver bypass machine (neck, underarm, and groin) are potential sites for infection. Infections in the sites where tubes are placed in your body (tubes to help you breathe, tubes in your veins to provide fluids, nutrition, and to monitor important body func tions) can cause pn eumonia, blood infections, and local infections. 11. Nerve Damage. Damage to nerves may occur. This can happen from direct contact within the abdomen or from pressure or positioning of the arms, legs, or back during the surgery. Nerve damage can cause numbness, weakness, paralysis, and/or pain. In most cases th ese symptoms are temporary, but in rare cases they can last for extended periods or even become permanent. 12. Psychiatric. Depression can be due to many fa ctors such as an underlying disease (particularly hepatitis C), brain chemical imbalances requiring antidepressant drugs of one type or anot her, or hor monal imbalance. A s erious procedure such as a transplant c an create many personal and f amily stresses. It is not unc ommon for transplant patients to exper ience anxiety and perhaps depression following their surgery, hospital confinement, and return home. 13. Disease recurrence after transplantation. Unfortunately, in most cases liver transplantation does not cure the primary cause of liver disease. As a result of the many surgical and medical adv ances within the practice of liver transplantation, most liver transplant re cipients can anticipate long-term survival and therefore recurrence of the original disease may become a threat to the long-term success of transplantati on. The severity of recurrence varies among patients largely due to unknow n reasons. In severe cases a second transplant is indicated; unfortunately, some patients may not be an appr opriate candidate for a second transplant. 18 The most common c ause of recurrent dis ease include viral hepatitis B and C. Medications to treat hepatitis B before liver transplantation and measures to prevent its recurrence after liver transplantati on with oral and injectable medications may be necessary. As for hepa titis C, recurrence in the bl ood is universal and there are no effective measures to prevent that. Up to 40% of patients will have accelerated liver damage from the hepatitis C and may even develop cirrhosis by 3 -5 years after tran splant. Treatment for h epatitis C after liver transplantation is possible. Liver tumors may rec ur after transplantatio n and the risk is higher in pati ents with larger tumors or those with involvement of the blood vess els. This has led to strict criteria for selecting liver cancer patients for liver transplantation. Autoimmune liver diseases such as prim ary biliary cirrhosis, primary sclerosing cholangitis and autoimmune hepatiti s may recur. In most cases, the immunosuppressive medications used to prevent rejection are sufficient to prevent significant autoimmune damage to the new liver. For patients with alcoholic liver disease, recidivism (relapse) may occur after liver transplantation. This has been sh own to lead to nonc ompliance with the transplant medications and a higher ra te of medical problems, particularly infections. 14. Other. Other possible complications include: injury to structures in the abdomen, pressure sores on the skin due to positioning, burns caused by the use of electrical equipment duri ng surgery, damage to arteries and veins, pneumonia, heart attack, str oke, permanent scarring at the site of the abdominal incision. Recovery The average length of stay in the ICU is variable and largel y dependent on your body’s tolerance of the surgical procedur e as well as your preoperative medical condition. Once your conditi on warrants it, you will be transferred to the transplant nursing floor. You should ex pect to spend 7-10 days in the hospital post-transplantation. You will be given a private room and your family will have the freedom to come and go as they choose. Soon after your transfer to the transplant floor, you will be ins tructed to begin getting out of bed. A physical th erapist will come to w ork with you in rebuil ding your strength. The i ndividuals working wi th you are familiar with the needs of transplant patients and will work di ligently to help you walk and begin functioning on your own. You will be encouraged to do c oughing and deep breathing exerc ises in order to keep your lungs clear and expanded and prevent pneumonia. You will be a sked to use an incentive spirometer every hour while awake. Your li ver is in the right 19 upper portion of your abdomen and is dire ctly below your right lung. This lung was pushed aside during the s urgery, and may initially collect fluid (pl eural effusion) or may not expand as well as it should. Frequent coughing and deep breathing will help r eturn your lungs to normal: cl ear, expanded, and f ree of mucus. Your diet will also be advance d during this time. You will begin with clear liquids and progress to solid food. We ll-balanced, high pro tein meals are necessary because your body will need adequate calories and protein to heal and rebuild itself. Few dietary restrictions are necessary. To help with your individual needs, the transplant dietitia n will discuss and instr uct you on foods that will be be neficial in thi s rebuilding process. B efore discharge, the transplant dietitian will counsel you indi vidually on the long-term nutritional guidelines that you will need to follow. Throughout your stay in the hos pital, the transplant team will record your daily lab and test results on a flow chart. Th is chart remains in your records in our transplant office so that we can follow your progress over time and provides an overall picture of your recovery. We feel that disc ussing your results and the intended plan of care while in your room provides an additi onal learning opportunity for you. Please do not hesi tate to ask questions during this time. A separate section in this manual explains the meaning of each of the different lab tests. Medications for Life You will be required to take medications for the rest of your life to prevent your body from rejecting the transpl anted liver. The types and doses of medications will be determined and adjusted by your physicians based on yo ur condition and health. Following transplanta tion you will receive further instructions and teaching regarding the medications speci fically ordered for you. Listed below are examples of som e, not all , of thes e medications and pote ntial side effects and risks. It is important to note that all anti-rejection medications can increase your risk for infections and malignancies. Tacrolimus (Prograf): headache, tremors, insomnia , reduced kidney fun ction, numbness and ti ngling of the extremitie s, elevated blood s ugar (diabetes), decreased magnesium levels, increased po tassium levels, and other serious side effects. Cyclosporine (Neoral, Sandimmune): tremors, high blood pressure, reduced kidney function, changes in gums, increased hair growth, and other serious side effects. Mycophenolate mofetil (CellCept): gastrointestinal disturbances, reduced white blood cell count, reduced platelet count, and other serious side effects. 20 Steroids: elevated blood sugar, weight gain, high blood pressure, osteoporosis, stomach ulcers, mental status changes, cataracts, muscle weakness, impairment of wound healing, and other serious side effects. Sirolimus (Rapamune): elevated cholesterol and tri glycerides, impairment of wound healing, lung problems, and other serious side effects. The goal of various medications during and after transplantation is to hel p your body tolerate the donated organ. Other medications may be required f or the rest of your life to treat or prevent various infections. Your potential need for these medications m ay be determined by the blood work obtained duri ng the evaluation process. Risks involving medical costs and insurance After you have a liver transplant, health insurance companies may consider you to have a pre-existing condition and refuse pay for medical care, treatments, or procedures. After the surger y, your health insurance and life insurance premiums could be raised and remain higher. In the future, insur ance companies could refuse to insure you. Benefits The benefit of liver transplantation to you is the hope of living l onger than your liver disease would h ave likely permitted. This pote ntial benefit cannot r esult from surgery alone; i t is dependent upon your following the ri gorous treatment plan prescribed by your physicians. Alternatives You have the choice NOT to undergo transplantation. If you choose not to have a transplant, treatment for your liver dis ease will continue. If you do not undergo the transplant surger y, your condition is likely to worsen and limit your life expectancy. Protected Health Information If you bec ome a transplant ca ndidate, federal regulations require that some personal health information about you be sent to the UNOS registry to allow you to be listed for an organ. Teaching Facility Your physicians are associated with the University of Texas Southw estern Medical Center which is a teaching facility . This means that res idents, fellows, students, and others may assist with parts of procedures or other medical acts as deemed appropriate by, and under the supervision of, your physicians. 21 For the purpose of advancing medical ed ucation and research, you cons ent to the admittance of observers and discussi on of your procedure with ot hers who may not be directly r esponsible for your care. You also consent to the review of and use of your medical information and records. The use of your medical information and records will not result in your identity being publis hed or revealed. In summary, transplantation, including the ri sks and complications outlined in this document, can result in serious injuries, damage, and death. Your physicians cannot predict how y our body will respond to a liver transplant. It is not known how the c ondition that caused your underlying liver disease will affect your transplanted liver. 22 TRANSPLANT RESOURCES Here is a list of resources that may be help ful to transplant patients, their families or support persons, and living don ors. Please note that the Inter net is a vast but not necessarily correct and accurate source. Your doctor is the best person to answer questions. Read every source; by all m eans – but please re ly on your doctor for medical decision-making. Information and Support Resources UTSW Kidney, Liver and Pancreas Transplant Support Group Meets Second Tuesday of every month in DePaul Auditorium Contact program social worker at (214) 645-1919 for more information. Organ Transplant Support, Inc. P.O. Box 471 Naperville, IL 60566-0471 E-mail: [email protected] 630-527-8640 630-527-8682 (Fax) Scientific Registry of Transplant Recipients www.ustransplant.org Transplant Health An interactive resource for health living that provides comprehensive health information for before and after transplant. www.transplanthealth.com Transplant Experience The Transplant Experience program was created to meet your specific needs throughout the transplant process. It’s information. It’s tools and tips. It’s real advice, from experts in transplantation and other transplant recipients. www.transplantexperience.com United Network for Organ Sharing (UNOS) www.unos.org www.transplantliving.org ww.optn.org Addiction Recovery Resources Narcotics Anonymous 24 Hour help Line: (972) 699-9306 or Spanish 1-888-600-6229 Turtle Creek Manor, Inc. 2707 Routh Street Dallas, TX 75201 Outpatient and non-hospital residential mental health and substance abuse services Forms of Payment Accepted: Self Pay & Private Health Insurance www.tcmanor.org Catholic Charities Diocese of Dallas St Joseph Adolescent and Family Services 5415 Maple Avenue, Suite 320 Dallas, TX 75235 (214) 631-8336 Outpatient Substance abuse treatment services Forms of Payment Accepted: Self payment, Medicaid, private health insurance www.catholiccharitiesdal.org Green Oaks at Medical City Dallas 7808 Clodus Fields Drive Dallas, TX 75251 (972) 991-9504 Outpatient, Partial hospitalization / Day treatment, Hospital inpatient Substance abuse treatment, Detoxification Forms of Payment Accepted: Self payment, Medicaid, Medicare, Private health insurance, Military insurance Hotline: (972) 991-9504 x8818 Website: http://www.greenoaksnetwork.com Nexus Recovery Center Inc and Nexus Residential Facility 8733 La Prada Drive Dallas, TX 75228 214) 321-0156 Outpatient, Non-hospital residential (24 hour) Substance abuse treatment services Forms of Payment Accepted: Self payment, private health insurance Intake: (214) 321-0156 x2106 Website: http://www.nexusrecovery.org Recovery Healthcare Corp 2520 Electronic Lane, Suite 810 Dallas, TX 75220 (214) 350-1711 Outpatient, partial hospitalization & day treatment Forms of Payment Accepted: Self payment, Medicaid, private health insurance Website: http://www.recoveryhealthcare.com Smoking Cessation Information and Web Sites American Lung Association 1-800-586-4872 www.lungusa.org 24 Additional Smoking Cessation Websites www.cancer.org www.americanheart.org www.cdc.gov/tobacco/ Hepatitis C Education and Support Since information about hepatitis C chan ges too fas t to be up-to-date i n a resource book, only Web sites are listed. If you do no t have Internet ac cess, go to your local public library or Internet café or the Patie nt Information Center at the HEP office to see these sites. Hep C Connection Provides a newsletter, support groups and information about hepatitis C. 800-522-HEPC (helpline) www.hepc-connection.org Hepatitis Foundation International A community that helps people with Hepatitis concerns manage and fulfill their lives 1-800-891-0707 www.hepfi.org American Liver Foundation 75 Maiden Lane, Suite 603 New York, NY 10038 800-465-4837 American Liver Foundation’s Help Line www.liverfoundation.org Hepatitis C Outreach Project Support groups and information. 503-285-8712 www.hcop.org Financial and Fundraising National Transplant Assistance Fund (NTAF) 3475 West Chester Pike, Suite 230 Newton Square, PA 19073 800-642-8399 E-mail: [email protected] www.transplantfund.org 25 New Start News Publication A publication of the National Transplant Assistance Fund. New Start News is available free of charge to anyone interested in NTAF National Foundation for Transplants (NFT) 5350 Poplar Avenue, Suite 430 Memphis, Tennessee 38119 800-489-3863 www.transplants.org Medicare 800-MEDICARE www.medicare.gov National Insurance Consumer Helpline Call to obtain the phone number of your state insurance department. 800-942-4242 Social Security: Disability Information 1-800-772-1213 www.ssa.gov/disability Texas Medicaid Program 877-252-8263 www.hhsc.state.tx.us/medicaid/ Prescription Drug Assistance Programs Many pharmaceutical manufacturers have financial aid progra ms for pa tients who qualify. Ask your so cial worker for th e manufacturers’ contact numbe rs for the medications prescribed for you, or contact the agency described below. Partnership for Prescription Assistance The Partnership for Prescription Assistance brings together America’s pharmaceutical companies, doctors, other health care providers, patient advocacy organizations and community groups to help qualifying patients who lack prescription coverage get the medicines they need through the public or private program that’s right for them. 1-888-477-2669 www.pparx.org Needy Meds Resource to assist in locating prescription assistance programs www.needymeds.com Medicare Prescription Drug Coverage “Part D” (1-800-633-4227) www.medicare.gov/part-d/ 26 Transportation Resources Medicaid Transportation 1-877-633-8747 Providing travel and lodging assistance to and from medical appointmen ts to patients covered by Medicaid and meet specific eligibility criteria. Social Wor k referral required. Angel Flight 3237 Donald Douglas Loop South Santa Monica, CA 90405 800-446-1231 or 888-426-2643 www.angelflight.com A national nonprofit organization of private pilots who provide free air transportation for patients who are traveling to and from medical treatment. Serves patients with limited financial resources. Corporate Angel Network (CAN) Westchester County Airport Building 1 Loop Road White Plains, NY 10604 914-328-1313 A nonprofit organization that arranges free air transportation for patients using corporate aircraft. National Patient Air Transport Help Line (NPATH) 800-296-1217 www.patienttravel.org Provides referrals to more than 40 air transportation options for patients throughout the nation, including commercial airline programs and nonprofit organizations, such as Air Lifeline, Angel Flight, and Corporate Angel Network. 27 OVERNIGHT LODGING CONVENIENT TO UTSW These nearby hotels and motels offer transplant patients of UTSW medical discount rates. Please notify hotel staff at check-in that you are a patient of UTSW or have a family member at UTSW to get the Patient-Family Medical Rate. The information listed was current when printed, but cannot be guaranteed. Please verify information with individual hotels. HOTELS SHUTTLE Additional Information as provided by hotel $79 No Boutique Style Hotel Built 1925/Historic Landmark Multilingual staff * Rate based on availability $50.99 Yes To Love Field & within 3 miles of downtown Continental Breakfast included $59 No Continental Breakfast included Guest Laundry facilities (Letter from hospital required) Complimentary Breakfast RATES (+ tax) 1 Hotel Indigo 1933 Main Street Dallas, Texas 75201 214/741-7700 2 Baymont Inn & Suites 2370 W NW Hwy. Dallas, Texas 75220 214/350-5577 3 Best Western 2023 Market Center Blvd. Dallas, Texas 214/741-9000 4 Bradford Homesuites 2914 Harry Hines Blvd Dallas, TX (214) 965-9990 $70-80 Yes Every 30 minutes until 8:30pm To and from UTSW 5 Candlewood Suites 7930 N. Stemmons Fwy Dallas, Texas 75247 214/631-3333 1 Bedroom $59 2 Bedroom $69 Yes Kitchenette Mini-Grocery on site Free use of washer/dryer $49.95 No . $95 Yes To and from UTSW M-F In-room internet access; Full Restaurant moderately priced $57 (single or double) Yes To and From Love Field & UTSW * reserved upon check-in In-room internet access; Guest Laundry facilities; Restaurant 6 7 8 Comfort Inn 14040 Stemmons Fwy I35 @ Valwood Pkwy Dallas, Texas 75234 972/406-3030 Courtyard Market Center 2150 Market Center Blvd. Dallas, Texas 75207 214/653-1166 Crowne Plaza 7050 Stemmons Fwy Dallas, Texas 75247 214/630-8500 9 Doubletree Dallas Market Center 2015 Market Center Blvd Dallas, Texas 75207 214/741-7481 10 Embassy Suites 2727 Stemmons Fwy Dallas, Texas 75207 214/630-5332 11 Hampton Inn 1015 Elm Street Dallas, TX 75202 (214) 742-5678 $75 Within 3 miles To and From Love Field & UTSW 12 Hawthorne Suites by Hyatt 7900 Brookriver Dr Dallas, TX (214) 688-1010 $45 1 bdr $65 2 bdr Yes To and From UTSW & Love Field Complimentary Breakfast Washer/Dryer Free Local Calls 13 Holiday Inn Select-North 2645 LBJ Fwy Dallas, Texas 75234 972/243-3363 $43 Yes To and From DFW Airport and Love Field on Sunday’s Internet access; 24 hr. business center 14 Quality Inn Market Center 1955 N. Market Dallas, Texas 75207 214/747-9551 $49 No Complimentary Breakfast 15 Ramada Inn 1575 Regal Row Dallas, Texas 75207 214/638-6100 3.56 miles $42 Yes Continental Breakfast included 16 Radisson Hotel Dallas Love Field 1241 W. Mockingbird Ln Dallas, Texas 75247 214/630-7000 2.47 miles $59 Yes 6:00 a.-11:00p In-room internet access; full service restaurant complimentary breakfast $79 (mention “We Care” promo) Yes 7a-11p In-room internet access; In-room Sony Play station; Restaurant; Full Service $94 Yes (Within 3 miles) And to Love Field & UTSW Complimentary Cooked to Order Breakfast; Wireless Internet Access; Complimentary manager’s reception (Beverages and snacks; 7 days a week) Internet Pool ON SITE ACCOMODATIONS: Guest House at UTSW Single Room $40 Double Room $50 $10 discount per night for senior citizens (214) 645-1200 Space is limited Maureen Heller * Please contact transplant social worker April Morgan at (214) 645-1919 for special pricing for low income families Please note: There are some community based options for lodging when financial means are a barrier. Please contact transplant social worker April Morgan at (214) 645-1919 to learn more about these options. 29