Living with Liver Transplantation Canadian Cataloguing in Publication Data Main entry under title: Living with liver transplantation Includes index. 1. Liver--Transplantation 2. Liver--Transplantation--Patients--Care. I. British Columbia Transplant Society. RD546.L48 1995 617.5’560592 C95-911011-9
Copyright © British Columbia Transplant Society, 1996
No part of this manual may be reproduced without the written permission of the Director (or designate) of the British Columbia Transplant Society.
2 Living with Liver Transplantation Acknowledgments
I would like to thank all of the health care professionals of the various transplant teams who participated in the development of this manual. Their time, patience, and guidance was appreciated. I would like to extend a very special thank you to the manual committee members from the Vancouver Hospital and Health Sciences Centre, St. Paul’s Hospital, and BC Transplant Society for their involvement in the monumental task of writing multi-organ manuals. Without their commitment of time, sharing of expertise, and genuine concern for providing the best possible patient education material, this manual would not be possible. I would also like to thank the Kidney Foundation of Canada for permission to use some of the graphics in this manual.
Yours Sincerely, Sue Howard Clinical Coordinator British Columbia Transplant Society Manual Committee Chairperson
Living with Liver Transplantation 3 Table of Contents
Introduction Chapter 1: Transplantation History of Transplantation...... 7-8 How Your Liver Works...... 8 How Cirrhosis of the Liver Affects Your Health...... 8-10 When to seek immediate medical help...... 10 British Columbia Transplant Society...... 10 Your Transplant Team...... 10-11 Overview of Transplant Phases...... 12-13 Pre-transplant Assessment...... 12 Waiting for a Transplant...... 12 Receiving a Transplant...... 13 Recovery on the Transplant Unit...... 13 Living with a Transplant...... 13
Chapter 2: The Gift for Life Organ Donors...... 14 How are Organs Allocated?...... 15 Thanking the Donor’s Family...... 15 Donor Memorial Service...... 15
Chapter 3: Waiting for Your Organ Waiting List...... 16 Stress During the Waiting Period...... 16-17 Emotional and Physical Symptoms of Stress...... 18 Dealing with Stress...... 18-19 Support Group...... 20 Monitoring Your Health...... 20 Preparing for the Call...... 21 Your Pager...... 21 Checklist: Getting Ready for the Call...... 22
Chapter 4: Receiving the Call Travelling to the Hospital...... 23 Preparation for Surgery...... 24
Chapter 5: Your Transplant Surgery...... 25 After the Operation...... 25 Tubes and Lines...... 26 Recovery...... 26 Visitors...... 27 Transfer to Transplant Unit...... 27
4 Living with Liver Transplantation Chapter 6: The Road to Recovery Recovery on the Transplant Unit...... 28 Physical Exercise...... 28-29 Breathing Exercises...... 29 Diet...... 29 Length of Stay...... 29 Emotional Support...... 30 Support Group...... 30 Rejection Episodes...... 30 Signs of Rejection...... 31 Biopsies...... 31 Treatment of Rejection...... 31 Chronic Rejection...... 32 Anti-rejection Drugs...... 32 Cyclosporine or Neoral...... 33 Tacrolimus...... 34 Azathioprine...... 35 Mycophenolate Mofetil...... 36 Prednisone...... 37 Taking Anti-rejection Drugs...... 38 Infection...... 38 Preventing Infection...... 39 Signs of Infection...... 40 Treatment of Infection...... 40 Biliary Complications...... 40 Cancer...... 40 Becoming Self-reliant...... 41 Monitoring Your Own Health...... 41 Taking Your Own Medications...... 41 Preparing for Discharge...... 41
Chapter 7: Adjusting to Your New Life Monitoring Your Health...... 42 Weight...... 42 Temperature...... 43 Transplant Clinic Visits...... 43 Medication and Other Costs...... 44 Routine Health Care...... 44-45 Guidelines for Healthy Living...... 46 Exercise...... 46 Driving...... 47 Travelling...... 47-48 Sexual Activity...... 48 Pregnancy...... 48 Community Resources...... 49 When to Call the Transplant Team...... 49
Glossary ...... 50-53
Living with Liver Transplantation 5 Introduction
To the transplant recipients and their families: Each of you plays a role and has a responsibility in the recovery process. The best way that you can accomplish this is to have a full understanding of transplantation. This manual is written to help you understand the process involved, and your responsibilities within this process. It is our hope that this manual will answer some questions, and be the catalyst for others. Questions you have should be written down and directed to one of the members of your transplant team.
“Nothing in life is to be feared. It is only to be understood.” —Marie Currie
6 Living with Liver Transplantation Transplantation
Learning that you have a serious illness is never easy, but dealing with the situation can be more challenging. At times, you may feel that you are coping well. At other times, you may feel overwhelmed by emotion. Whether you were told of your illness only recently or some time ago, you may still find it hard to accept that this has happened to you. Like others in your situation, you may have gone through a period of bargaining, making promises in return for good health. You may feel angry or depressed. You may resent the fact that your illness has forced you and your family to make lifestyle changes. Accepting these changes can be difficult, but with the support of your family, your friends, and your health care providers, you can learn how to deal with your illness and its effects. Transplantation offers you a second chance at life and hope for the future. You will also face new challenges and responsibilities. Life will be different after your transplant. You will have to make a lifetime commitment to taking care of your new organ. This is not as overwhelming as it sounds. If you follow your transplant team’s instructions and take your medications, life after your transplant can return almost to normal. You also can look forward to returning to work and resuming your old activities, and pursuing new activities with energy and health. This chapter describes: • the history of organ transplantation • how your liver works • how liver failure affects your health • the role of the BC Transplant Society • your transplant team • the phases of transplantation
History of Transplantation
Transplantation has become a well-recognized treatment option for people with organ failure. Three major factors have made transplantation a success: advances in surgical techniques, the discovery of anti-rejection medications, and increasing public awareness of the need for organ donors. The first successful human liver transplant was performed in 1967 by Dr. Tom Starzl and his group, but the procedure did not receive widespread acceptance in medical practice until the early 1980s.
Living with Liver Transplantation 7 The discovery of 2 new immunosuppressives, Cyclosporine and monoclonal antibodies, in the early 1980s, set the tone for a new era in liver transplantation. Along with the discoveries in medicine, surgical techniques improved dramatically. The ability to preserve donor organs for an extended period of time also contributed to the success that liver transplant recipients enjoy today. The overall increased knowledge and expertise in the field of transplantation have made liver transplants successful for most recipients. The long-term results of liver transplantation are difficult to predict, since the procedure has only been considered non-experimental since 1983, but the short-term results are very favourable. Of patients who receive a liver transplant, 80 to 90% will survive the first year following the surgery, and 70 to 80% will survive 5 years. These survival rates have been determined based on the results of liver transplants done each year all over the world.
How Your Liver Works
The liver, which is the largest solid organ in your body, can weigh up to 1.5 kilograms. It is located on the right side of the abdomen, below the lungs and behind the rib cage. Your liver carries out more than 400 functions each day. However, the major functions include the following: • filtration of blood to remove substances that may be harmful to your body • production of bile, which assists in the digestion of food • production of albumin and clotting factors • maintenance of hormones and storage of vitamins • changing of food into energy • detoxification of chemicals, drugs, and hormones
How Cirrhosis of the Liver Affects Your Health
When chronic diseases cause the liver to become permanently injured and scarred, the condition is called cirrhosis. The scar tissue that forms in cirrhosis harms the structure of the liver, blocking the flow of blood through the organ. The loss of normal liver tissue slows the processing of nutrients, hormones, drugs, and toxins by the liver. Also slowed is production of proteins and other substances made by the liver. In a healthy liver, blood carrying bilirubin circulates through the liver. The bilirubin is then attached to bile, and excreted into the small intestines and finally through the stool. With cirrhosis, the bilirubin remains in the blood, causing the skin to turn yellowish (jaundice). An early sign of jaundice is when the whites of the eyes (sclera) turn yellow.
8 Living with Liver Transplantation With cirrhosis, the liver is unable to produce enough bile salts to break down fat. Therefore, stools will often be pale, large, and foul-smelling. Also, vitamins that are fat soluble (A, D, E, and K) are not properly absorbed. In a healthy liver, bile salts that are not used get absorbed. With cirrhosis, bile salts are not absorbed; instead, they continue to circulate in the blood and then are deposited in the skin, which may cause itchiness. A healthy liver produces albumin. Albumin’s function is to keep the pressure between the inside and outside of the blood vessels in balance. With cirrhosis, the production of albumin decreases, allowing some of the fluid from inside the blood vessels to seep out and collect in various areas of the body. Some fluid collects in the abdominal cavity, causing swelling (ascites). When the size of the abdomen increases, the diaphragm is pushed up, making it somewhat difficult to breathe and eat. Some swelling may also occur in the ankles (edema). This swelling gets progressively worse throughout the day. A healthy liver produces clotting factors. These are responsible for stopping the bleeding when you cut yourself. With cirrhosis, a decrease in proteins needed for blood clotting makes it easy for the person to bruise or to bleed. The bleeding may be fatal. A healthy liver filters blood, removing particles that should not be in the blood. With cirrhosis, the filtering system is impaired, and particles such as bacteria may remain in the blood, which may cause infection. When blood is not being properly filtered by the liver, ammonia and other substances that need to be broken down and excreted continue to circulate in the blood, causing confusion. This is called hepatic encephalopathy. In a healthy liver, blood flows through the liver easily. A serious problem for people with cirrhosis is pressure on blood vessels that flow through the liver. Normally blood from the intestines and spleen is pumped to the liver through the portal vein. But in cirrhosis, this normal flow of blood is slowed, increasing pressure in the portal vein (portal hypertension). This blocks the normal flow of blood causing the spleen to enlarge. Therefore, blood from the intestines tries to find a way around the liver through new vessels. Some of the new vessels become quite large and are called “varices”. These vessels may form in the stomach and esophagus (the tube that connects the mouth with the stomach). They have thin walls and carry high pressure. There is great danger that they may break, causing a serious bleeding problem in the upper stomach or esophagus. If this happens, the patient’s life is in danger, and the doctor must act quickly to stop the bleeding. This is called a variceal bleed. A healthy liver is able to produce, store, balance, and adjust the sugar the body needs. With liver failure, the amount of sugar storage is limited, and the balancing adjustment of sugar in the body is decreased. This results in the body having too much or not enough sugar.
Living with Liver Transplantation 9 As cirrhosis progresses, so do the symptoms. These include the following: • jaundice (yellowing of the skin and eyes) • severe itchiness • mental confusion or coma • vomiting of blood or blood in your bowel movements • easy bruising and tendency to bleed caused by lack of blood clotting ability (this may include frequent nosebleeds) • abnormal build-up of fluid in the abdomen, called ascites; fluid may also build up in your legs, called edema • fatigue
When to seek immediate medical help • you have abdominal pain with a fever. This a sign of spontaneous bacterial peritonitis • you are vomiting blood, have blood from your rectum, or uncontrolled nosebleeds • you develop confusion. You may not recognize this, therefore, your family will need to be aware of this change and take you to the hospital
British Columbia Transplant Society
The British Columbia Transplant Society (BCTS) was established in 1985 to provide solid organ transplantation in BC. BCTS now also provides organ retrieval and public education. Extensive research ensures that organ transplantation in BC remains at the forefront of transplant technology. BCTS is affiliated with the province’s three transplant hospitals: Vancouver Hospital and Health Sciences Centre, St. Paul’s Hospital and British Columbia Children’s Hospital.
Your Transplant Team
Your transplant team consists of experts who will take care of you throughout the transplantation process. Some of the team members are described below, but you may also meet others. Every one is an important member of the team; however, the amount of time you spend with each will depend on your individual needs.
Clinical Coordinator: These nurses coordinate your pre-transplant assessment, and provide you and your family, referring specialist, and family physician with information on transplantation and your progress from the time of referral until the transplant is completed. The coordinator also provides you with access to other members of the transplant team.
10 Living with Liver Transplantation Clinical Resource Nurse– These Solid Organ Transplant clinic nurses monitor your progress closely after the transplant and continue to be your contact and resource person when you go home.
Chaplain: The staff from the pastoral care department are available to provide support to you and your family. As well, they can help you with religious or spiritual needs.
Clinical Pharmacists: The pharmacist counsels you on your medications, and can answer any questions about these medications or their side effects.
Dietitian: The dietitian assesses your nutritional needs and helps you put together a personal dietary plan to keep you in the best possible health before and after your transplant.
Intensive Care Unit Nurses: These nurses are responsible for your care for the first few days following surgery.
Medical Specialist: These doctors have specialized in the care of your specific organ. They are involved in your assessment, your health care before transplantation, and your long-term health care following transplantation.
Physiotherapists: The physiotherapists help you with a series of physical exercises designed to speed you along the road to recovery. They will start meeting with you while you are still in intensive care.
Psychologist: The psychologist takes part in your pre-transplant assessment to help you with psychological concerns such as coping with stress, understanding mood changes, and managing pain.
Social Worker: The social worker takes part in your pre-transplant assessment and is available throughout the transplantation process to provide you and your family with emotional support, information, and resource counseling.
Surgeons: These doctors are specialists in transplant surgery, and will meet with you during your assessment. They perform the transplant surgery and are responsible for your health care immediately after surgery.
Transplant Unit Nurses: These specially trained nurses care for you before and after surgery when on the transplant unit. They help to begin your rehabilitation and prepare you for going home by teaching you about your medications and how to look after yourself.
Living with Liver Transplantation 11 Overview of Transplant Phases
There are 5 phases to the transplantation process. Each phase is described briefly below.
Pre-transplant Assessment Although transplantation is considered an established treatment for end-stage organ failure, it is not suitable for everyone, so every potential transplant patient must be carefully assessed. The assessment phase starts when your specialist refers you to the transplant team. This assessment process will occur over several clinic appointments and usually takes several months to complete.
During the assessment you will have several tests and be interviewed by various team members to determine whether transplantation is the best treatment option for you. You will also receive information that will help you decide whether you want to go ahead with the transplant.
Waiting for a Transplant Waiting begins once you and the transplant team have decided to proceed with a transplant. At this time, your name is placed on the active waiting list and the search for a suitable donor organ begins. Your wait can be as short as a few days or as long as a couple of years. How long you wait depends on the availability of suitable donor organs and the urgency of your medical condition. You will be given the option to receive a pager or to use your personal cell phone so that you can be located as soon as a donor organ is found. While you are waiting for a transplant, you will be reviewed in the Pre-Transplant clinic every 3 to 4 months. It is very important to communicate any medical problems to the transplant coordinator. We may need to put you “on hold” as certain medical problems or infections you have may not be compatible with a successful transplant outcome. We need to ensure that you are in the best condition possible when you undergo the transplant surgery to ensure a healthy recovery.
12 Living with Liver Transplantation Receiving a Transplant It is important that we be able to locate you. Keep your pager or cell phone with you at all times. If you are traveling, you will have to let the coordinator know where you will be. When a suitable organ has been found, arrangements are made for you to travel to Vancouver General Hospital.You will be admitted to a nursing unit and prepared for surgery. The liver transplant surgery takes about 6 to 10 hours. Following surgery, you will stay in the intensive care unit for 1 to 7 days, or until you are ready to be transferred to the transplant unit.
Recovery on the Transplant Unit How much time it takes you to recover on the transplant unit depends on your individual circumstances. The average stay in hospital is 2 to 4 weeks. During your stay, the transplant unit nurses and other team members will prepare you for going home and caring for yourself. You will be expected to know about your medications and to be able to administer them properly. Information will be given to you about follow-up appointments with the transplant doctors and the nurses in the transplant clinic.
Living with a Transplant You must live near the transplant clinic for the first 3 months following hospital discharge so that you can be closely monitored. When you first leave the hospital, you will need to visit the clinic at least twice a week (Mondays and Thursdays), and eventually less frequently. If you are from out of the Lower Mainland area, this is a major consideration and should be discussed prior to coming to Vancouver for your transplant. Discussion with your social worker prior to transplantation is key, and your social worker will work with you to establish a plan focusing on social support and accommodation. Usually after 3 to 4 months, your clinic visits decrease to once a month, and eventually, to once every 3 to 4 months or less. The frequency of your follow-up visits to the clinic depends on your health and progress. This varies for each individual.
Living with Liver Transplantation 13 The Gift for Life
Transplantation is only possible because of the gift for life that donors make. Organs for transplantation come from 2 sources: the bodies of people who have died recently; and living donors, such as family members or friends. This chapter describes: • organ donors • how organs are allocated • thanking the donor’s family • donor memorial service
Organ Donors Receiving an organ from a recently deceased person is called a cadaveric donation. These donors are often victims of head injuries or other traumatic injuries. The organs become available suddenly and without warning; therefore, you will only receive a few hours notice of your transplant. Many donors indicate they want to donate their organs by registering with the British Columbia Organ Donor Registry. Organ Donor Registry Cards are available at the BC Transplant Society and other location throughout BC. You can also register on line at www.transplant.bc.ca . It is important to stress that if you wish to be considered as an organ donor you must let those close to you know of your wishes. Approximately 1 of every 3 organs that could be eligible for transplant is lost due to lack of consent from family. Universal Referral is new legislation in the province of British Columbia, initiated by the British Columbia Transplant Society. All hospitals which are capable of ventilating patients (supporting patients on breathing machine) are required to report all deaths or impending deaths. These calls are then triaged by a central transplant service to determine whether the referral constitutes a potential solid organ or tissue donor. The intention of this legislation is to increase transplantation rates, and to ensure that the donor’s wishes are honoured. Cadaveric transplants are done soon after the brain death of the donor. The body of the donor is maintained by ventilator and intravenous fluids and medications until the organ can be retrieved. Cadaveric donations offer an excellent chance for a successful transplant because of careful organ selection. Living Donation occurs when a relative or friend comes forward as a potential donor. This is discussed in detail in “The Facts about Live Liver Donor Transplant”.
14 Living with Liver Transplantation How are Organs Allocated?
Organs are matched primarily by blood type, but size is also a factor. Children usually receive organs from other children and adults usually receive organs from other adults. Other tests are also performed by the transplant team to ensure that the donated organ is compatible and offers a good chance of success. Organs are not matched by sex, race, or age. You and the donor will be tested for cytomegalovirus (CMV). More than 60% of the population has been exposed to CMV and so will test positive. This means that you have previously been exposed to this virus and that it now lies dormant or sleeping in your body. CMV poses no threat to the general population, but can be a serious threat to those on anti-rejection drugs. This is because the immune system is altered by the anti-rejection drugs. This may allow the “sleeping” virus to wake up. If your test negative and are given a liver from a CMV positive donor, you will be given medications following the transplant to help suppress the virus. All prospective donors are tested for hepatitis and HIV (the virus that causes AIDS). Your transplant team will do everything possible to ensure that you receive an organ with the greatest chance of transplant success.
Thanking the Donor’s Family
In BC, the Human Tissue Gift Act protects the identities of both donors and recipients, and their families. This means that you will not know who your donor was, and the donor’s family will not know who you are. At some point after transplantation, BCTS will write a letter to the donor’s family expressing thanks and gratitude for the gift of an organ on behalf of the recipient. We encourage each recipient to write an anonymous note of thanks. BCTS will forward this to the donor’s family. This not only acknowledges the enormous gratitude felt by each recipient, but additionally helps the donor family immensely in dealing with their grief.
Donor Memorial Service
A multi-faith donor memorial service is held in Vancouver every 6 months to acknowledge and pay tribute to the donors for their gift for life. The service is a celebration of that gift, and provides an opportunity to remember the donors and say thank you and goodbye. All donor families throughout the province are invited to attend, as well as recipients, organ retrieval teams, transplant teams, and other medical and support staff involved with organ donations and transplants. It is common for recipients to be asked to speak at the service.
Living with Liver Transplantation 15 Waiting for your Organ
Once you and the transplant team have decided to proceed with a transplant, your name is placed on the active waiting list and the search for a suitable donor organ begins. This chapter describes: • the waiting list • stress during the waiting period • monitoring your health • preparing for the call
Waiting List
How long you must wait for an organ once you are on the waiting list is difficult to predict. Some people are matched with a suitable organ immediately, while others may wait for well over a year. The average wait is 12 months. How long you have to wait will depend on how easy you are to match, and the seriousness of your condition. There is no order to the waiting list—it is not first come, first served. When an organ is available, the list is checked to find the best possible match. Since some people are harder to match because of their size or blood type, they may have to wait longer. In cases where two people are equally matched to the donor organ, the degree of urgency is considered. For example, if one person is at home and is doing fairly well while the other person is in intensive care on multiple drug support, then the organ goes to the sicker of the two—the person in intensive care.
Stress During the Waiting Period
Most people find waiting for a suitable organ very stressful. There are many factors that contribute to added stress at this time. Some of the factors that you may experience are:
Realization of the severity of your illness: Finding out that you have a severe illness was probably the first major shock. If this was some time ago, you may have accepted this already. If you found out only recently, you are probably still coming to terms with how this will affect your life.
Worry about finding an organ: Most people find themselves worrying about whether a suitable organ will be found in time. This worry tends to grow stronger the longer you are on the list. Just remember that most people are offered a suitable organ and are successfully transplanted.
16 Living with Liver Transplantation Physical disability: Due to your illness, you may find yourself unable to do some things that you used to do easily. For example, you may not be able to drive your car or operate machinery if you become too ill. How disabled you are depends on how sick you are. If you have always enjoyed certain physical activities, giving them up can be difficult.
Loss of work: You may find yourself unable to work and support yourself. This could be caused either by your physical disability or because you have to move to the Lower Mainland to be near the transplant centre.
Financial problems: If you have to give up work, you may find yourself with financial problems or restrictions. The social worker can assist you by ensuring that you are on all the government programs that you qualify for, and can also make appeals to other agencies on your behalf.
Isolation from friends and family: If you have to move to Vancouver temporarily to be near the transplant hospital, you may find yourself isolated from your family and friends. If you have to stop work, you may find yourself missing your work friends. Even if you do not have to move or stop work, you may find that when some friends visit, they seem uncomfortable around you and do not know what to say. Fortunately, it is also common for friends to become much closer. As well, you may make new friends with people in a similar situation to yourself. These friendships are often very close and become permanent. Families, too, seem to find themselves closer together when one member gets sick.
Dependency on family and friends: If you have physical disabilities, you may find yourself depending on others to help you do things, or you may have to depend on someone else financially. If you have always looked after yourself, this may not be easy, and may result in feelings of frustration, anger, or uselessness. To deal with these feelings, remember that this is a temporary situation, and that once you get better, you will be independent again. Perhaps you will return the favour to them someday. On the other hand, you may have looked after them in the past. Also remember that doing something for you may be giving them personal satisfaction. Relax, enjoy the attention, and do not feel guilty. Life has a way of balancing these things out.
Concern about the donor: Some people find themselves concerned that their life depends on the death of someone else. If you have these concerns, remember that the donor will die anyway, whether you receive an organ or not. The donor’s death was not caused by your illness. When you receive the organ, the family members of the donor will receive comfort knowing that something good has come of their loss. Knowledge that the donor’s death was not meaningless often helps to resolve their grief.
Remember, an organ is a gift for life from the donor to you—accept it with joy; it is a magnificent reminder of our shared humanity.
Living with Liver Transplantation 17 Emotional and Physical Symptoms of Stress For some people, the stress experienced from adjusting to the changes in their life may eventually cause physical and emotional symptoms. Emotional symptoms of stress may include: • anxiety • depression • loss of emotional control • panic • anger
Physical symptoms of stress may include: • nausea • difficulty breathing • muscle tightness • aches and pains • shortness of breath • palpitations Worst of all, the build-up of stress can make it harder to get well again.
Dealing with Stress If you are experiencing symptoms of stress, you are not alone. This is a stressful time in your life. Most people on the waiting list are going through the same things that you are. To help you get through this period in your life, here are some things to think about that others have found useful.
Know and understand your condition: Find out as much as you can about your condition and your medical treatment. Most public libraries have clear and readable books on common medical problems. Many people find that the more they know, the better able they are to stay in good health until transplantation.
Discuss your condition with informed people: Talking about your condition with informed people, such as members of your transplant team, will help. Excessive worry without expressing your concerns will likely increase your level of anxiety. Talking about your condition will help you know and understand it better.
18 Living with Liver Transplantation Be realistic about your situation: Some people try to deny what is happening or pretend that they are not as sick as they are. This may leave them and their families unprepared for a worsening of their condition. A saying to consider is “Hope for the best, but prepare for the worst.” This may mean preparing a will, or arranging for someone to look after your children in your absence. Many people report that putting their personal affairs in order makes them feel useful and better about facing the future. Instead of worrying about these unattended responsibilities, it frees them to live each day richer and fuller.
Find a friend for support: Do not try to cope with your emotions and feelings alone. Find someone that you can share these feelings with. Discussing your feelings openly with a spouse, sympathetic friend, or support person can help you understand them. If you are associated with a church, synagogue, mosque, or temple, you may find your fellow members and spiritual leaders to be a worthwhile source of support and comfort.
Continue your normal routine: Continue your normal life as long as you can, and be as independent as you can. The less change you allow in your life, the less stress you will feel. Do not give up your usual activities or change your lifestyle unless you have to, or your doctor tells you to.
Enjoy some private time: Sometimes, with everything that is going on, it is difficult to find time for yourself. If you are used to regular time alone, make sure you get it. If you have to, book some time with yourself to do the things you want to do, and make sure you do them.
Learn relaxation techniques: Staying relaxed is essential to avoiding the physical and emotional symptoms of stress. Learn some techniques for reducing your stress level, such as relaxation and breathing exercises. The transplant team psychologist, social worker, and occupational therapist can teach you various techniques. Physical exercise also reduces stress if you can exercise comfortably. Check your local night school or community centre courses, or ask your family doctor.
Keep a positive attitude: Experience clearly shows that those who can keep a positive mental attitude feel better, respond to treatment better, and have a better survival rate than those who let their concerns overwhelm them. Regardless of your situation, try not to lose hope—join the fight for your survival. Remember, most people on the waiting list are successfully transplanted and go on to live happy, healthy, and personally meaningful lives.
Seek professional help: Most people at some point in their lives seek out professional counselling to help them sort out their feelings, or get their life in order. If you would like to speak with a mental health professional, just ask any member of your transplant team. Getting help for psychological or emotional problems is not a sign of weakness, but a sign of healthy self-awareness and a commitment to maintaining a positive attitude towards getting well again.
Living with Liver Transplantation 19 Support Group There is a liver transplant support group that meets regularly in the Lower Mainland. The support groups consists of people on the active waitlist for transplants, as well as those already transplanted. Your social worker can provide updated information about support groups events. The purpose of the group is to provide information and mutual support to transplant patients and their families while they wait for a transplant. The gathering gives you a chance to network with other patients and share your concerns and experiences. Many patients find the group valuable. If you live in an area where no group exists, there is usually someone who has had a successful transplant who is willing to be a listener and advisor. A member of the team can attempt to put you in touch with a post-transplant patient.
Monitoring Your Health
While you are on the waiting list, you will be monitored by either your family doctor, or your specialist, or both. How often you see them will depend on your condition. You will also be monitored by your transplant team. The purpose of these visits is to keep you physically and psychologically healthy and comfortable while you wait. The more relaxed and healthy you are before the transplant, the faster and easier your recovery will be. Learning ways to better manage your stress may be especially important at this time. It is also important to eat a well-balanced diet and maintain your normal weight. If you find that your weight is going up or down, let the clinical coordinator know. Should you get a cold, flu, fever or infection while you are waiting, see your family doctor. Contact the clinical coordinator if any new problems arise or if you are hospitalized.
20 Living with Liver Transplantation Preparing for the Call Your Pager/Cell Phone Since organs must be transplanted rapidly, and there is no warning of when a suitable organ will become available, you will be given a pager or you can use your own cell phone. When a compatible organ is found, you will be paged or called immediately. You must carry the pager or cell phone with you at all times. The pager or phone is of no use if it is beeping on the counter at home and you are off shopping. When the pager beeps, go to the nearest phone and call the coordinator immediately. If you are going to be away from your home telephone number overnight, or will be travelling outside the pager area, let the clinical coordinator know in advance. If you are unsure of the pager range, always call the coordinator. For example, if you live in Vancouver and are planning to travel to Victoria by ferry, the coordinator will want to know: • when you are leaving and returning • the route you plan on taking • which ferry you plan on catching there and back • the make, colour, and licence number of your car • a phone number where you can be reached in Victoria Occasionally, you may find that your pager goes off, but when you phone, the coordinator did not page you. This usually happens because of a low battery or a wrong number. No matter how many false alarms you have, always call the coordinator when your pager beeps. Check the pager every morning to ensure it is on. Remember to always leave the switch in the “on” position. Change the battery in your pager once a month. BCTS will also test the pager every 2 weeks, usually on Thursdays, to ensure the pager is working. If you have any questions about your pager, call the clinical coordinator.
Living with Liver Transplantation 21 Checklist: Getting Ready for the Call Once you get the call to come to the hospital, you will not have much time to get ready to leave. Here is a list of things to do to ü prepare for the call. Make arrangements for someone to look after your pets, water your plants, and pick up your mail while you are in the hospital. Pack your suitcase in advance and make a list of the items that you will want to add at the last moment (usually things you use every day, like your contact lenses and make-up or shaving supplies). Bring clothes that are comfortable to exercise in after surgery, such as a sweat suit (you will probably have bulky dressings, so make sure the clothes are roomy).
Include a good pair of either running or walking shoes.
Bring a roll of quarters for the phone and parking meters, or a cellular phone if you have access to one. Consider getting a calling card if you plan on making a lot of long distance calls from the hospital. Bring an envelope with a small amount of cash to hold you until you can get to a bank or cash machine. If you are arriving by air, you will need some money for a taxi from the airport to the hospital.
Make a list of the people you need to notify and their phone numbers.
Make a fan-out plan (a plan where you phone two people, they in turn phone two more people, etc., until everyone is phoned). The less you have to do when the call comes, the better. Bring your CD/MP3 player, a book or two, a box of thank you notes, a pen and maybe your favourite coffee mug. The more you feel at home and the more you have to do, the quicker the recovery will seem to go.
If you are coming from outside the Vancouver area, the members of your family who will be travelling with you should also keep their suitcases packed. If you will be travelling by air, you will need photo I.D. to board the plane.
22 Living with Liver Transplantation Receiving the Call
One day, hopefully soon, you will receive a call telling you that a suitable organ may have been found for you, and that you are to come to the hospital immediately. The call may come any time of the day or night. This chapter describes: • travelling to the hospital • preparation for surgery
Travelling to the Hospital
You will be contacted by telephone or pager as soon as a suitable organ is found. When you get the call, stop whatever you are doing and arrange for transportation to the hospital without delay. The clinical coordinator will tell you how and when to come to the hospital. From the moment you receive the call, do not eat or drink anything—this includes gum, candies, even water! If you are told to use ground transportation, have a friend or family member drive you to the hospital, or take a taxi. We do not recommend that you drive yourself—you will likely be too anxious and distracted to drive safely. Besides, you would have to spend precious minutes looking for a parking space at the hospital and then have to arrange for someone to pick up your car. And do not take the bus—it’s usually too slow. If a ground or air ambulance is needed to get you to the hospital, the clinical coordinator will make all the arrangements. If you are outside the Lower Mainland, the clinical coordinator may arrange a commercial flight or charter flight for you. You may be asked to take a B.C. Ferry. You will need to have your priority ferry boarding letter to ensure you will get on the required sailing. If you are coming from within the Vancouver area, leave your pre-packed suitcase behind. Your family or support person can bring it later once you are out of surgery. If you are coming from outside the Vancouver area, bring your pre-packed suitcase with you. Leave valuables behind, such as expensive watches or jewelry, and bring only a small amount of cash to tide you over.
Living with Liver Transplantation 23 Preparation for Surgery
When you arrive at the hospital, go straight to the admitting desk in Emergency. Most patients are admitted directly to the transplant unit. The transplant team will ask you some questions and do some bloodwork and other tests. Very soon after entering the operating room, you will be put to sleep and your surgery will be started. The donor organ is usually assessed for suitability before you go to sleep. You must prepare yourself for the possibility of the donor organ not being suitable. This is commonly called a dry run. This can be very disappointing for everyone involved, and particularly you. If this happens to you, just remember that your already have one organ that doesn’t work, and you do not need another. If the transplant surgery is cancelled, you will be discharged from the hospital. For this reason, tell your family or support person to stay close by until they know the transplant is going forward, and to ensure that the hospital has a phone number where they can be reached. You and your support person will then need to make arrangements to return home. Your family or support person may either wait at the hospital during the surgery, at home, or elsewhere near the hospital. Make sure the transplant team knows where they can be contacted after the surgery.
24 Living with Liver Transplantation Your Transplant
Once the surgeons have confirmed that the donor organ is suitable for you, you will be given a general anaesthetic and the surgery will begin. During the transplant surgery, your liver is removed and replaced with the donor liver. This chapter describes: • the transplant surgery • after the operation
Surgery
Liver transplantation is often referred to as orthotopic, because the transplanted liver is put in exactly the same place the liver normally is in. The operation begins by removing the diseased liver. To remove the liver, it must be detached at 5 sites. Four of these sites are blood vessels, while the fifth site is the common bile duct. The new liver is then reconnected at the same 5 sites. The operation will take approximately 6 to 10 hours. The surgery is performed through a large incision in the centre of your abdomen and under your ribcage. More details on the actual surgical procedure are available from your transplant team.
After the Operation
After the operation, you will be taken to the intensive care unit to recover. You will hear voices and the sound of medical equipment around you. For several hours you will be very drowsy. You will notice a large bandage on your abdomen, and various tubes and lines connected to you.
Living with Liver Transplantation 25 Tubes and Lines
Endotracheal tube – You will have a tube in your mouth running down your windpipe. The tube will be connected to a machine called a ventilator to help you breathe with a minimum of effort. The tube is also used to let the nurses suction mucus from your lungs. Since the tube presses against your vocal cords, you will not be able to speak until it is removed. However, you will be able to nod yes or no, use hand gestures, or write questions or answers on a writing board. The tube is usually removed within 24 hours.
Heart monitor: A heart monitor will continuously display your heart rate.
Nasogastric tube: This tube enters your stomach through your nose. It removes gas and fluid from your stomach to help prevent nausea and vomiting.
Urinary catheter: This tube keeps your bladder drained until your normal body function returns, usually within 2 or 3 days.
Intravenous lines: Intravenous lines in your neck and arms will provide you with medications and fluids until you are able to take them by mouth. Most of the IV lines will be removed within a week, depending on how well you are feeling.
Hemovac drains: There are usually 3 drains that are inserted to drain fluid from around the liver. Generally these are removed before your discharge from hospital.
Arterial Line: This line is used for drawing blood and blood pressure monitoring. Once you are stabilized this will be removed.
Recovery During the first day or two, you will not be able to eat or drink. Once the endotracheal tube is out, you may be able have ice chips to suck on to relieve your thirst. You will gradually be given liquids, and then solid foods. While you are in the intensive care unit, you will initially receive one-to-one nursing. The nurse assigned to you will look after you only. You will be given medications for pain to ensure that you are as comfortable as possible. The average stay in the intensive care unit is 2 days.
26 Living with Liver Transplantation Visitors After the operation, your family and designated close friends will be anxious to see you. The transplant team recognizes the importance of their visits to your recovery. They also know that your family will need support, information, and reassurance. However, the first priority of the transplant team is to ensure that you get enough rest to promote healing. Immediate family or significant others can visit you in intensive care following surgery once the ICU nurses have finished admitting you the unit. They may see you before you are conscious. Please tell other relatives and friends they will have to wait a few days before visiting. Encourage them to call your immediate family for information. No more than 2 visitors are allowed at a time. Special visiting arrangements can be made with your nurse. Visitors with a cold, flu, throat infection, or who are sick should not visit. When visitors first see you, you will not look your normal self. You will have tubes and lines coming from your body, and will be surrounded with equipment. It is not unusual for your face to be swollen from extra fluid (this will disappear in a day or two). You may also temporarily look pale and be cool to the touch, which is partially due to the anaesthetic. Do not be shocked if visitors look startled when they first see you. When your family leaves after a visit, they should tell your nurse where they can be located and when they plan on coming back.
Transfer to Transplant Unit Recovery time varies from person to person. The length of time you remain in intensive care will depend on your progress. Once you have recovered sufficiently, usually within a few days, you will be moved to the transplant unit. In the transplant unit, family and significant others are encouraged to visit. Visiting hours are not restricted. Children who have recently received live vaccinations should not visit. However, there may be times when it would be better for your family to stay away. For example, you may be resting, and are better left undisturbed, or a nurse or doctor may be performing a sterile procedure. Ask, if you have a special request. The nursing staff will try to accommodate you and your family’s needs. Visitors with a cold, flu, throat infection, or who feel sick should not visit. Children who have recently received live vaccinations should not visit.
Living with Liver Transplantation 27 The Road to Recovery
Once you are out of intensive care and back on the transplant unit, you are on the road to recovery. Step by step you will get your strength back and once again be able to look forward to a normal life. This chapter describes: • recovery on the transplant unit • anti-rejection drugs • rejection episodes • chronic rejection • infection • cancer • becoming self-reliant
Recovery on the Transplant Unit
Within a few days after surgery, if your condition is stable, you will be moved to the transplant unit. Here your transplant team monitors your progress continually and the transplant surgeon visits you regularly. The nursing staff do daily bloodwork and twice-daily physical assessments. Throughout your recovery, you will be given medications to control any discomfort. The incision will initially be covered with a dressing, which the nurse will change daily or as needed. Until your incision has healed properly, usually about 2 weeks, you will not be able to have a shower or a bath, other than sponge baths at your bedside. The staples closing the incision are usually removed when your surgeon feels that you are adequately healed. Your doctor will keep you informed of your progress.
Physical Exercise After surgery, you will feel weak and tired and may be unwilling to exert yourself. However, experience has shown that getting you up and about not only makes you feel better, but reduces the risk of complications, such as pneumonia or blood clots. To get you back on your feet, your nurse and physiotherapist will give you some exercises to do. The goal is to return you to your previous level of wellness as soon as possible, and you will be surprised at how quickly you will start feeling better. But don’t forget that exercise must be balanced with plenty of rest.
28 Living with Liver Transplantation You will start with simple, easy-to-do exercises and progress to more demanding ones. There are 4 levels of exercises: • simple arm and leg exercises while you are in bed; these start in the intensive care unit • sitting, bathing at the bedside, and walking • riding a stationary bike, walking on the treadmill, and working with light weights • an exercise program that will be designed for you to follow after discharge • do not exercise if you experience pain, shortness of breath or chest pain and seek immediate medical attention. Your physiotherapist and nurse will help you get started, particularly during the first two levels of exercises.
Breathing Exercises During the first week, you will do breathing exercises to keep your lungs clear and prevent infection. These exercises include deep breathing and coughing, and must be done 5 or 6 times an hour. The physiotherapist will give you an inspirometer, a simple device to help you breathe deeply, and will show you how to use it.
Diet To promote healing and return you to good health, it is important to eat a well- balanced diet. At first you will be given only liquids, such as juices and clear soups. You will progress slowly to small, easily digestible meals and high calorie drinks. As your system returns to normal, you will be able to eat normal food. Most people are back to a normal healthy diet within a week of surgery. Some of the drugs you will be taking may affect your appetite. Some make everything taste the same, while others can make you very hungry. So don’t be surprised if you want more or less food than you usually do. A dietitian will visit to see how much you are eating and will make changes to your diet so that your body gets all the nutrients you need for a speedy recovery.
Length of Stay How long you stay on the transplant unit will depend on how fast you are recovering. Everyone recovers at different rates. Most people are discharged within 2 to 4 weeks. Your doctor and the transplant team will keep you informed about your progress.
Living with Liver Transplantation 29 Emotional Support You will get plenty of emotional support during your recovery. After surgery, you may experience different emotions and feelings than those you experienced before the surgery. Some of these emotions and feelings may be caused by the medications you are taking. Steroids can leave you feeling depressed, irritable, or possibly very excited. Cyclosporine can cause confusion, anxiety, and depression. Many patients have complained of mood swings while taking these drugs. If you experience mood swings, remember they are probably caused by the drugs and will subside as the dosages are gradually reduced. Under no circumstances should you change your medication dose yourself. Some people also experience anxiety or panic at the prospect of being discharged and going home. Although they have dreamed about going home, leaving the hospital where they feel secure and cared for is frightening. Talk to your social worker if you think you and your family may need some help at home.
Support Group Your support group can be a great help once you return home and we encourage you to attend the meetings. Just talking to others who are going through the same things and experiencing the same problems can decrease your anxiety and help provide solutions to your problems. Presently, the major support group is in Vancouver. Liver transplant patients on Vancouver Island meet regularly with a combined lung, heart, and liver group in Victoria. More specific information about the support group in your area is available from team members.
Rejection Episodes
It is likely you will experience an episode of rejection. It is referred to as an episode of rejection because it is usually a temporary, reversible event. It will likely occur in the first 6 months of having your new organ, but it can happen at any time as long as you have the organ. Rejection may occur even if you have been taking your medications faithfully. While you may find this thought unsettling, it is a common occurrence and should be expected. In most cases, with early detection and treatment, the transplant team should have no problem reversing the rejection completely. The best ways to fight rejection are first, stop it before it starts, and second, recognize it and treat it early. You can work at preventing rejection by taking your medications as prescribed For early detection, learn to identify the signs and symptoms of rejection, and report them immediately to the transplant clinic nurse or physician. Regular blood work will be arranged by the Solid Organ Transplant clinic to check for blood markers of rejection.
30 Living with Liver Transplantation Signs of Rejection Early identification and reporting of symptoms are important in successfully treating and reversing rejection. Most rejection episodes are mild. You may not have any symptoms, and may only be aware that rejection is occurring because it was detected by abnormal liver function determined by your blood work. On the other hand, you may also start to feel symptoms of the rejection episode. To ensure that the rejection is treated quickly, watch out for any of the following warning symptoms: • malaise or tiredness • low grade fever • loss of appetite • nausea or vomiting • abdominal pain or tenderness • dark yellow or orange urine • clay-coloured stools • jaundice (yellow colour of the skin and eyes) If you experience any of these symptoms, report it to your transplant team immediately.
Biopsies Liver biopsies may be necessary to confirm the diagnosis of rejection. A biopsy is usually performed following two elevated liver function tests. In the ultrasound department, you will be given a local anaesthetic. You will remain lying flat in the ultrasound department for 1 hour following the procedure.
Treatment of Rejection When rejection is detected, it must be treated immediately. Patients may or may not be admitted to hospital to treat an episode. Treatment usually involves high doses of a steroid, which can be taken either intravenously (through a vein), or by an increase in prednisone tablets taken orally. In most cases, this will reverse the rejection. If high doses of steroids are not effective, an intravenous medication called anti-thymocyte globulin (ATG) is most often given. ATG is a medication which blocks the function of the immune cells that are responsible for rejecting the organ. It is given intravenously for up to 10 days. ATG can cause severe flu- like symptoms during the initial 2 or 3 doses. You will be admitted to hospital for the initial doses and given medication to help minimize the symptoms. If you have any unusual discomfort or symptoms, report them to your doctor or nurse. Your anti-rejection medications may also be changed.
Living with Liver Transplantation 31 Chronic Rejection
Most transplant recipients do not experience chronic rejection, a condition that most often occurs over a long period of time. Ongoing chronic rejection slowly damages the transplanted organ. Unfortunately, unlike acute rejection, it is not possible to reverse the damage, although it sometimes is possible to halt the progression. As with acute rejection, chronic rejection can occur despite taking your medication regularly, however is most common when anti-rejection medications are not taken as prescribed. You may need to change to a new anti-rejection drug. You may experience the following symptoms with chronic rejection: • fatigue • abdominal pain or tenderness • decreased appetite • nausea and vomiting • dark yellow or orange urine • clay-coloured bowel movements • jaundice • bloating (swollen ankles, hands, stomach) or weight gain
Anti-rejection Drugs
Your immune system is your body’s defence against infection and disease. If nothing were done to stop the immune system, it would eventually damage or destroy your new organ. Rejection is a common complication for most transplant recipients. It occurs because your body’s immune system recognizes your transplanted organ as “foreign” and tries to get rid of it. This process is called rejection. Successful organ transplantation is now possible because of the use of anti- rejection drugs. To try to prevent your immune system from rejecting your new organ, you will be given anti-rejection drugs. The doses of these drugs are carefully measured and monitored so that they prevent rejection, but still allow your immune system to recognize and fight infection. With the use of these drugs, your chance for a successful organ transplant is excellent. However, you will have to take the anti-rejection medications for the rest of your transplanted organ’s life. Various drugs are used alone or in combination. When you first start taking anti-rejection drugs, the doses will be high. After the initial period, as the risk of rejection decreases, the doses will be lowered. The most commonly used drugs are tacrolimus or cyclosporine, sirolimus, azathioprine or mycophenolate, and prednisone. Each drug works in a slightly different way and has different side effects. By taking 2 or 3 drugs together, you can be on lower doses of each drug to minimize their side effects, while maintaining an effective defense against rejection and infection. After you are transplanted, the nurses and the pharmacy staff will teach you about your medications and how to take them. Initially, nurses will give the medications. Gradually, you will take responsibility for taking them yourself.
32 Living with Liver Transplantation Tacrolimus Tacrolimus (also known as Prograf® or FK-506) is in the class of medications that revolutionized transplantation and is considered the backbone of the immune suppression regimen. This drug modifies certain white blood cells called lymphocytes which are involved in rejection. Tacrolimus is used with steroids and/or azathioprine (Imuran®) or mycophenolate mofetil (Cellcept®) to prevent or treat rejection of the transplanted organ. To be effective, the drug must stay at a certain level in your blood. If the level is too low, your transplanted organ may be rejected. If the level is too high, your kidneys may be damaged. Usually, any damage is reversible once the drug returns to its proper level. The level of tacrolimus is measured frequently while you are in the hospital, and after discharge during visits to the clinic. Tacrolimus is available in 0.5mg, 1mg and 5mg capsules. The 0.5mg capsules are yellow and oblong with “0.5mg” written on the top. The 1mg capsules are white and oblong with “1mg” written on the top. The 5mg capsules are pink and oblong with “5mg” written on the top. Patients are usually given the 1mg capsules after transplant until the final dose is known. Like other anti-rejection medication, try to take your dose at the same time every day. While this medication is best absorbed on an empty stomach (without food), as long as you take it the same way every day, it does not matter whether it is taken with or without food. Your blood levels will be used to find out how much tacrolimus you have in your system. Make sure your doctor, dentist, and pharmacist are aware of all medications you are taking, including anything you buy off the shelf, such as over-the-counter drugs and herbal or home remedies. Taking antacids at the same time as tacrolimus, for example, may affect the way tacrolimus works for you, so these drugs should not be taken together. Like other medications, tacrolimus may cause side effects in some people. If you think you are experiencing side effects, talk to your doctor right away. Do not stop taking tacrolimus on your own. Possible side effects of tacrolimus (Prograf®): • headaches • nausea and vomiting • diarrhea or constipation • difficulty sleeping • changes in moods or emotions • high blood pressure • swelling or tingling in your hands and feet • hair loss Some patients may experience side effects not listed above. If any side effect becomes bothersome or won’t go away, contact your doctor, transplant clinic, or pharmacist.
Living with Liver Transplantation 33 Cyclosporine or Neoral Cyclosporine Cyclosporine (also known as Neoral Sandimmune®) was the first drug found to be consistently effective for preventing rejection. It works in a similar way as tacrolimus and is used in some transplant patients in place of tacrolimus (cyclosporine and tacrolimus should not be taken together) Cyclosporine is available in soft gelatin capsules and oral liquid solution. Patients are usually given capsules after transplant. The capsules are available in 25mg (grey), 50mg (white), and 100mg (grey). Each capsule is wrapped in foil, and should be kept in the foil until you need a dose. When you are ready to take a dose, remove the number of capsules you need to make up the dose. Swallow the capsules whole. You may take cyclosporine with any drink except grapefruit juice unless your physician instructs you otherwise. It is very important that you take cyclosporine with the same drink every time. The most common side effects of cyclosporine are listed below. Remember that everyone responds differently to medications, so you may experience only some of the side effects or none at all. Possible side effects of cyclosporine: • high blood pressure • increased risk of infection • mild hand tremors • fine hair growth on the upper body • gum tenderness (to prevent problems with your gums, brush and floss your teeth daily, and visit your dentist regularly) • sensitivity to hot and cold • runny nose • vivid dreams If you notice any of these side effects, tell a member of your transplant team. They will make sure the problem is a side effect of the drug, and not a sign of rejection of your new organ.
34 Living with Liver Transplantation Azathioprine Azathioprine (also known as Imuran®) is also used to prevent rejection. This drug suppresses the production of certain white blood cells which are active in the process of rejection. The drug also suppresses the production of cells that are important in fighting infection. A complete count of blood cells is done daily while you are in the hospital, and regularly at the clinic once you are discharged. The dosage of azathioprine is adjusted to keep the blood counts within safe limits. Azathioprine is available in both intravenous solution and oral tablet form. It comes in 50 mg tablets which can be broken for smaller doses. The most common side effects are listed below. Remember that everyone responds differently to medications, so you may experience only some of these side effects or none at all. Possible side effects of azathioprine: • nausea and vomiting • loss of appetite • skin rash • muscle/joint pain • infection If you notice any of these side effects, tell a member of your transplant team. They will make sure the problem is a side effect of the drug, and not a sign of rejection of your transplant, or another medical problem.
Living with Liver Transplantation 35 Mycophenolate Mofetil Mycophenolate (also known as Cellcept®) is an anti-rejection drug that works in much the same way as azathioprine (Imuran®). Some transplant patients take mycophenolate instead of azathioprine (mycophenolate and azathioprine should not be taken together). Mycophenolate is used with cyclosporine or tacrolimus and steriods to prevent or treat rejection of the transplanted organ. Mycophenolate is available in blue/orange gelatin capsules with “Cellcept 250” printed in black ink on the blue cap and “Roche” on the orange body. Each capsule contains 250mg of mycophenolate mofetil. Mycophenolate also comes in 500mg tablets that are grayish-purple in colour with “Cellcept 500” printed on one side and “Roche” printed on the other side. Patients are usually given the 250mg capsules after transplant to allow smaller dose adjustments if needed. It is important to leave the capsules/tablets in the blister pack until you need a dose. When you are ready to take a dose, remove the number of capsules you need to make up the dose. Although mycophenolate is best absorbed on an empty stomach, because of stomach upset this is not often possible. Therefore we recommend taking your medications with food if needed, but most importantly to take it the same way every day. Swallow the capsules whole. Like other anti-rejection medication, try to take your dose at the same time every day. Make sure your doctor, dentist, and pharmacist are aware of all medications you are taking, including anything you buy off the shelf, such as over-the-counter drugs and herbal or home remedies. Taking antacids at the same time as mycophenolate, for example, may affect the way mycophenolate works for you, so these drugs should not be taken together. Like other medications, mycophenolate may cause side effects in some people. If you think you are experiencing side effects, talk to your doctor right away. Do not stop taking mycophenolate on your own. Possible side effects of mycophenolate: • nausea and vomiting • diarrhea • loss of appetite • weakness • swelling of legs and hands • infection • headaches Some patients may experience side effects not listed above. If any side effect becomes bothersome or won’t go away, contact your doctor, transplant clinic, or pharmacist.
36 Living with Liver Transplantation Prednisone Prednisone is a steroid, similar to one that your body produces normally. It decreases tissue swelling and suppresses rejection. The initial high dose of prednisone is gradually reduced until a low maintenance dose is established. For many patients, it is possible to stop prednisone by 4 to 6 months after transplant. Higher doses of steroids are used to treat acute rejection. The most common side effects of prednisone are listed below. Again, remember that everyone responds differently to medications, so you may experience only some of these side effects or none at all. Possible side effects of prednisone: • stomach upset (should always be taken with food) • weight gain and fluid retention • bone thinning • fullness of the face • acne/rash • easy bruising • joint pain • mood swings • infection If you notice any of these side effects, tell a member of the transplant team. The team will make sure the problem is a side effect of the drug, and not a sign of rejection or another medical problem.
Living with Liver Transplantation 37 Taking Anti-rejection Drugs It is important to take your medications at the same times each day so that their levels in your blood do not go up and down. To ensure that the drugs work properly, you must take them exactly as prescribed. If you miss your dose and it is less than half the time before your next dose is due, then take the missed dose. If it is more than half the time to your next dose, then skip the missed dose and wait for your next dose. Do not double the dose. For example, if you were scheduled to take your medication every 12 hours and you remember to take your medication within 6 hours of the time it was due, then you can take the missed dose. If you have any questions regarding the schedule of your medications or taking missed doses, then make a note of the time and date of the missed dose and inform the transplant team as soon as possible. If you vomit within 1 hour of taking your medication, repeat the dose. Never change the dose of your drugs or stop taking them unless directed by the transplant team. Remember to always inform your doctor and dentist of the medications you are taking.
Infection
A possible side effect of anti-rejection drugs is an increase in risk of infections. While suppression of the immune system is necessary to prevent organ rejection, it weakens the body’s ability to fight off infections. Fortunately, there are ways of reducing the risk of infection while still maintaining adequate defences against rejection. The risk of contracting an infection is higher during the first few months following a transplant when your doses of anti-rejection drugs are high. As the doses fall, the risk of infection falls. As with rejection, the key to fighting an infection is to prevent it, identify it early, and treat it quickly.
38 Living with Liver Transplantation Preventing Infection The best way to prevent an infection is by avoiding close contact with people who have them. Most viruses, bacteria, and fungi are passed from person to person in tiny water droplets and may be transferred simply by shaking hands. Someone sneezing or coughing is sending out droplets which you might breathe in, or transfer to your mouth or other mucous membrane (such as your eyes) with your hands. During the first few months following your transplant, you must be diligent in avoiding infections. This may mean having to avoid normal close contact with family members or your spouse if they are sick. A few nights on the couch is a small price to pay for your good health. You may not be able to prevent all infections, but you can certainly reduce the risk by washing your hands regularly and avoiding putting your fingers in your mouth or touching your eyes. Family and friends with infections should also wash their hands before touching you. Also avoid: • people with colds or infections • crowded, poorly ventilated, smoke-filled rooms • public transportation, especially at rush hours • public whirlpools and steam rooms • activities that may cause breaks in the skin (for example, gardening or yard work) • changing cat and bird litter It also helps to alert your co-workers to the fact that you are on immunosuppressants. You will find that people are remarkably considerate when they know the situation. After the transplant, you may be taking medications as a preventative measure against commonly occurring infections. Some of the common infections and the medications that prevent them are: • Candida, oral thrush – nystatin, fluconazole (anti-fungals) • Herpes simplex virus – valacyclovir (anti-viral) • Cytomegalovirus (CMV) – gancyclovir intravenous and valgancycovir (anti-virals) • Pneumocyctis pneumonia (PJP) – co-trimoxazole, sulfatrim (antibiotic)
Living with Liver Transplantation 39 Signs of Infection Early detection is essential to the successful treatment of infection; therefore, it is important to report any symptoms immediately to your transplant team. Symptoms of infections are: • a temperature above 37.5° C (99° F); if your temperature is high, take it a second time in 1 hour, before calling • coughing up green or yellowish sputum, or a dry cough • a burning or stinging sensation when you urinate, or a pink tinge to the urine • sores anywhere on the body, including cold sores • any redness, swelling, discharge, or pain around your incision, or around any cut or scrape • nausea, vomiting, diarrhea • neck stiffness accompanied by headache Remember, if you have any of these symptoms, report them to your transplant team immediately.
Treatment of Infection Just as with rejection, the keys to fighting infection are first, to prevent it, and second, to detect it early and treat it quickly. A wide variety of viruses, bacteria, and fungi can cause infections, and a wide variety of drugs are used to combat them. The drug you will be given will depend on the type of infection and its location. You may receive more than 1 drug. You will be given more information on a drug when it is prescribed.
Biliary Complications
Bile leak – occurs when bile collects outside the bile ducts. You may experience pain over the liver, nausea, and/or fever. Biliary stenosis (narrowing of the bile ducts) – occasionally the bile duct narrows and becomes blocked. Surgery or a stent may be needed to open the duct.
Cancer
Certain types of cancer, particularly skin and lymph node cancer (lymphoma) and cervical cancer for woman, are a possible complication of the long-term use of anti-rejection drugs. These drugs, while altering your body’s immune system to prevent rejection, may leave you more vulnerable to other diseases, including cancer. The most common treatment for lymph node cancer is reducing the doses of your anti-rejection drugs and letting your immune system fight off the cancer. Any new skin lesion or change to a mole should be reported to your doctor and transplant clinic nurse. Cervical cancer can be detected with regular Pap smears and treated very effectively if diagnosed early. If a cancer is found or you are at high risk of cancer, your transplant team may choose to change your anti-rejection medications.
40 Living with Liver Transplantation Becoming Self-reliant
The last leg of your trip on the road to recovery is becoming self-reliant again. While you are on the transplant unit, the transplant team will teach you how to monitor your own health and take your own medications.
Monitoring Your Own Health The nurses will show you how to take and record your temperature if you are unclear. You will also be taught the signs and symptoms of organ rejection and infection, since early detection of problems is so important.
Taking Your Own Medications Following surgery, you will begin taking 8 to 10 drugs, which may include: • neoral cyclosporine or tacrolimus • azathioprine or mycophenolate • prednisone • anti-viral drug (val-acyclovir or gancyclovir or valgancyclovir) • antibiotic drug (co-trimoxazole) • anti-hypertensive drug (nifedapine, amlodipine) • anti-ulcer drug (pantoprazole) • vitamins and minerals (centrum forte, calcium, and magnesium) These drugs are essential for your recovery. It is really the availability of these drugs that has made organ transplantation possible, so they must be taken exactly as prescribed. Taking these drugs can get rather complicated since there are so many of them and they are taken in different forms and at different times. Once you have recovered adequately, you are expected to participate in a self- medication program. Nursing and pharmacy staff will review each medication with you. For the first while, your nurses will give the drugs, but before you are discharged, they will teach you what each drug is for, how to take it, and its possible side effects.
Preparing for Discharge Your family and friends are an important part of your support system. We strongly encourage you to have at least one person participate in learning about monitoring your health and taking your medications. Make arrangements with your nurse. Before leaving the unit, you will be given information about the post-transplant clinic. You will come here regularly for check-ups and bloodwork. The visit will give you an opportunity to meet the staff and become familiar with the routine of future clinic appointments.
Living with Liver Transplantation 41 Adjusting to Your New Life
After your transplant, you will want to return to your normal life as quickly as possible. While the transition from hospital to home is normally a happy time, there are many adjustments to make. At first it may be difficult to return to a normal life as so much time is taken up monitoring your health and taking medications, but with time, these tasks become easier. A common reaction to going home is to feel stressed. One important way of minimizing stress is to make sure you feel confident looking after yourself and monitoring your own health—so this chapter focuses on: • monitoring your health • transplant clinic visits • medications and other costs • routine health care • guidelines for healthy living • driving • travelling • sexual activity • community resources • when to call the transplant team
Monitoring Your Health
As a transplant recipient, it is extremely important that you monitor yourself for any signs or symptoms of rejection or infection. You will need to check your weight and temperature every day in the early transplant period, and once they are stable, less frequently. Once you have been transferred from the intensive care unit to the transplant ward, your nurse will teach you how to take and record your vital signs. Bring your record with you each time you visit the out-patient clinic so your doctors and nurses can review your progress with you.
Weight Weigh yourself once a week at home. Empty your bladder first.
42 Living with Liver Transplantation Temperature An increase in body temperature may be a symptom of infection or rejection. Initially, you will need to check your temperature 3 times a day, and any time you feel hot or unwell. You can buy a thermometer at any drug store. Make sure you get one that measures in Celsius. Wait 10 minutes after eating or drinking anything hot or cold before taking your temperature. If the reading is above 37.5° C, take it again in 1 hour. If your temperature is still above 37.5° C, report it immediately.
Transplant Clinic Visits
The purpose of clinic visits is to closely monitor your progress so that any problems or complications can be treated promptly. You will receive more information about the transplant clinic before you leave the transplant unit. After you are discharged from the hospital, you must visit the Transplant Clinic. The visits are usually twice a week for the first 4 to 6 weeks. After that, you will probably need to visit less often. How frequently you visit the clinics will depend on how well you are doing. Some people recover faster than others and have fewer complications. Your doctor and the clinical resource nurse will advise you on your progress. Your clinic visits may include: • bloodwork • a visit with the clinic nurse • an examination by your transplant physician • meetings with other transplant team members The clinic staff will monitor your test results and notify you by telephone when appropriate. If you live outside of the Lower Mainland, you will need to find and pay for a place to stay in Vancouver for at least the first 3 months after discharge from hospital. You will have to arrange your own transportation to and from the clinic. You will not be able to take public transit due to the risk of infections. If you need any help with accommodation or transportation, talk to your social worker. Once you are back home, we encourage you to continue to participate in your support group. If there is no group near you, your transplant team can give you the names and telephone numbers of the transplant recipients nearest you. Other recipients are usually glad to listen and share their experiences with you.
Living with Liver Transplantation 43 Medication and Other Costs
The anti-rejection drugs you will be prescribed are available free of charge from the Transplant Outpatient Pharmacy located in the Transplant Clinic. Other drugs must be purchased by you at your local pharmacy. Always check with the Clinical Resource Nurse at the SOT Clinic prior to filling any prescriptions that were prescribed outside the transplant clinic. Please ensure that you have registered with B.C.’s Fair Pharmacare program prior to transplant. Application forms are available from your pharmacy. For more information, talk to your pharmacist or look on the B.C. Fair PharmaCare website. During the first 3 to 6 months, you may also be taking drugs to prevent infections, so the total cost of your medications will be quite high. Once you stop taking some of these drugs, the cost will come down significantly. Talk to your transplant team and other recipients about the best and cheapest places to buy your medications. Besides medications, there are other expenses that you may incur after your transplant, including: • accommodation in Vancouver before you can return to your community • travel to and from the Transplant Clinic • health monitoring equipment and supplies, such as blood pressure device, weight scale, and thermometer • medic alert bracelet or necklace • other supplies if required (gauze, tape, cleaning solutions) Maintaining confirmation of all out of pocket medically related costs is important as they may be able to be claimed on your income tax.
Routine Health Care
Even though you will be making regular visits to the Transplant Clinic, you should continue to have yearly medical check-ups by your family doctor. For women, the check-ups should include a breast exam and a pap smear. Women should continue to do monthly breast self-examinations at home. For men, your annual check-up should include a prostate exam. For colds flus,and other illnesses that are not related to your transplant, continue to see your family doctor. Your doctor will receive a progress report after every visit you make to the transplant clinic. Before you fill any prescription or non-prescription drugs, check with the transplant clinic first. Some drugs that your doctor may not be aware of can react with your anti-rejection drugs. Medic-alert bracelet or necklace: Wear a medic-alert bracelet or necklace after your transplant. In an emergency, this will identify you as a transplant recipient who is taking anti-rejection drugs. Before you leave the transplant hospital, you will receive a form to order your bracelet or necklace.
44 Living with Liver Transplantation Dental care: After the transplant, when you are taking anti-rejection drugs, you will be more susceptible to oral infections. Visit your dentist every 6 months for an examination and cleaning. You should not have any routine dental interventions done for the first 6 months after your transplant. Please call your post-transplant clinic nurse prior to having any dental procedures for further instructions. It is important to maintain oral hygiene, which includes daily brushing and flossing.
Immunizations and Vaccinations: A vaccine is a suspension of either live or dead bacteria/viruses that are administered for the purpose of preventing infectious disease. Immunization is usually not recommended during the first 6 months after transplantation because the patients are usually receiving the highest doses of immunosuppression. As a result, vaccination in this period is associated with the poorest response. Patients who are receiving immunosuppressive drugs have reduced immune responses; therefore are at higher risk of developing the infection. You should not receive a live vaccine. Some live vaccines are oral polio, measles, mumps and rubella (MMR), BCG, and yellow fever). This is not a good idea for transplant recipients. Check with the transplant clinic before getting any shots. Other people who are vaccinated with a live virus may spread the virus through the nose, urine, and stools (i.e. babies). This is known as “viral shedding”. Most children under the age of six are receiving these vaccinations. If you are in frequent contact with children (e.g. if you are a teacher, parent, grandparent, etc.), remember to take precautions and practice good hand washing.
All family members must also maintain good hygiene and thorough handwashing, especially prior to food handling. This will decrease the risk of catching the virus by its usual route of hand to mouth. Flu shots are a good idea. Contact your transplant clinic for more information. It is recommended that all transplant patients have their immunizations up-to-date prior to transplation. Your clinical coordinator will give you more information regarding immunizations and vaccines.
Living with Liver Transplantation 45 Guidelines for Healthy Living
Do not smoke – Smoking is bad for anyone’s health, and especially bad for transplant recipients. Because you are taking anti-rejection drugs, you have a higher risk of getting lung infections or cancer. Second-hand smoke is also harmful, so stay out of smoky areas. There are now many strategies available to help with smoking cessation. These include self- help groups, hypnosis, the nicotine patch, and drugs which work on reducing craving. Often a combination approach is essential if you are to succeed. Remember, the transplant team is sincere in wanting you to enjoy the benefits of your new found health, and will assist you in trying to quit smoking. It may take several tries before you are able to quit smoking, so don’t be discouraged if you don’t succeed on you first attempt. Eat healthy foods – Try and keep your weight within the normal range for your height and build. It is easy to gain weight after a transplant because prednisone increases your appetite. Try to reduce the amount of fat, particularly animal fat and cholesterol, in your diet to protect your coronary arteries from fatty build-up. Try to restrict the amount of sodium in your diet so you will not retain water. Avoid potato chips, pretzels, and other salty foods. Do not add salt to food at the table and try to use as little as possible in cooking. The transplant dietitian will review your diet with you after the transplant and monitor your progress during clinic visits. Exercise – Being inactive puts the transplant recipient at risk of cardiac disease, diabetes and cancer. Aerobic exercise is the best kind of exercise for reducing these risks. Walking, bike riding, swimming or dancing helps to improve muscle strength, strengthen bones, preserve lean muscle mass while reducing fat tissue. Aerobic activity will change your metabolism (diabetics often require less insulin with regular exercise), and above all, positively affect you outlook on life. Fitness walking is an excellent aerobic exercise. It is recommended that walking 3 times a week for 20 to 30 minutes is as beneficial as running and is easier on your joints.
46 Living with Liver Transplantation Driving
Check with your transplant physician before you start driving again. Generally, you will be able to drive once your incision is healed—usually about 6 to 8 weeks after your transplant. But before you drive, think about how you feel, particularly your: • vision and hearing • physical coordination and reaction time • muscle strength and endurance • general awareness and judgment • memory of physical surroundings Wearing a seat belt over your incision may bother you initially. Pad the area with a small blanket or pillow.
Travelling
Travelling and taking holidays are some of the many bonuses of having a transplant. Once your transplant physician has told you that your condition has stabilized . This means when you are down to minimum once a month blood work, then you can start planning. There are few limitations on where you can safely travel. Before leaving, however, notify the clinic first. The clinic will give you a letter listing your current medications (sometimes useful when crossing borders), recent bloodwork results, and phone numbers of the transplant clinic, the BC Transplant Society answering service where you can contact your transplant physicians, and the nearest transplant centre in the area you are travelling. Travel health insurance/cancellation insurance: Because the cost of medical services can be high outside of Canada, it is a good idea to carry travel health insurance. It is also a good idea to get cancellation insurance on your flights and bookings in case you suddenly have to change your plans. Medications: Keep all medications in their original containers when travelling so that the drug name is clearly marked. Also get a travel letter with information about your medical situation from your Solid Organ Transplant clinic nurse. This is very important when crossing borders. Carry twice the amount of anti-rejection drugs that you will need. Keep half with you at all times and put the other half in your luggage. That way, even if your luggage or handbag is stolen or lost, you will have enough medications to get you through the trip. Bloodwork: If you are going to be away for more than 2 weeks, you may need some bloodwork done while you are away. Since you will have to pay for it yourself, only the minimum tests are usually needed. Check with the Solid Organ Transplant Clinic.
Living with Liver Transplantation 47 Sunscreens: Some of your medications may make your skin more sensitive to the sun. This can increase your risk of a sunburn. Also, being on anti-rejection medications may increase your risk of skin cancer. It is a good idea to use a sunscreen whenever you are outside, but particularly if you are in a tropical climate, near water, on snow, or at a high elevation. Also limit the length of time you spend in the sun. The best sunscreens are those classified as SPF (sun protection factor) 15 or higher with both UVA and UVB protection. Make sure it is waterproof so it does not come off when you go in the water or sweat. Immunizations: Check with your local community health agency travel clinic, and transplant physicians to see if you will need any immunizations for the places you intend to visit.
Sexual Activity
As a general rule, sex takes about as much energy as climbing 2 flights of stairs. For several weeks after the transplant, avoid putting too much strain on your incision. Let your comfort level be your guide. You may have to experiment with various positions to find the most comfortable. It is important to remember that sexual feelings can also be expressed through talking, touching, holding hands, and kissing. Although sexual relations can be embarrassing to discuss, it is beneficial to resume intimate relations. Many healthy people go to counsellors to help deal with issues of intimacy. If you have any questions about sexual activity, or questions about family planning, discuss these with your doctor or clinic nurse. Female patients usually resume their menstrual cycle after liver transplantation. High doses of prednisone may stop menstrual flow, but you will continue to ovulate and can become pregnant even though you are not having normal periods. You may need to discuss your choice of contraceptives with your doctor. Oral contraceptives (the pill) may interfere with cyclosporine absorption, and may be less effective if taking mycophenolate so are generally not recommended.
Pregnancy Part of returning to a normal lifestyle may include the desire to have children. A number of liver transplant recipients have had successful pregnancies. If you wish to pursue this option, discuss it in length with members of your transplant team. You will be given up-to-date complication/risk literature on pregnancy and liver transplant patients, compiled from experiences all over the world.
48 Living with Liver Transplantation Community Resources
If you need any help at home before or after the transplant, there are community resources available. Your transplant team can assess your needs and arrange for help. Resources may be available for: • physiotherapy • nursing care at home • looking after your children • help with cooking and house cleaning • occupational therapy
When to Call the Transplant Team
Call the clinic immediately for any problems or concerns related to your transplant or anti-rejection drugs. The transplant team is particularly interested in symptoms of rejection or infection, so you should report any of the following: • swelling of the body tissues due to salt and water retention (edema) • shortness of breath • fatigue • body temperature of more than 37.5° C for more than 1 hour • loss of appetite or nausea • any source of unusual bleeding (vomiting, nosebleeds, blood in bowel movements or dark tarry stools) Remember, it is better to call and have it turn out to be nothing, than not to call and have something significant go untreated. Outside of clinic hours and on weekends, you can call a 24-hour answering service at BC Transplant Society. Call 604-877-2240 or 1-800-663-6189 and ask for the physician on call for liver transplants. Transplant Clinic: 604-875-4439 during office hours Monday to Friday, 7:30 a.m. to 3:00 p.m.
Living with Liver Transplantation 49 Glossary
Active waiting list: list of names of persons who are waiting for a donor organ. AIDS: acquired immune deficiency syndrome. Ambulatory clinic: outpatient clinic which monitors progress after the transplant. Anti-hypertensive: medication to control high blood pressure. Anti-rejection medication: drugs, such as cyclosporine, azathioprine, and prednisone, which work to prevent the body from rejecting a transplanted organ. Azathioprine: anti-rejection drug. Suppresses the production of certain white blood cells which are active in the process of rejection. Bacteria: microscopic organism responsible for certain types of infections. Biliary stenosis: narrowing of the bile ducts. Biopsy: physical sampling and testing of small pieces of transplanted organ to test for rejection. Blood pressure: measure of the internal pressure of the circulatory system. Can indicate changes in the heart’s output, the volume of fluid circulating in the system, or kidney function. Brain death: stage of death at which a brain is considered to be irreversibly dead. The point at which cadaveric organs are usually removed. Cirrhosis: scarring of the liver caused by liver disease Cadaveric donation: receiving an organ from a deceased donor. Cancer: a malignant or invasive growth or tumor. Candida: a common yeast infection which can cause thrush. Cholesterol: a form of animal fat, found in foods such as meat, fish, poultry, eggs, and dairy products. Chronic rejection: form of rejection that occurs over a long period of time. Ongoing chronic rejection slowly damages the transplanted organ. Clinical coordinator: nurse who coordinates the pre-transplant assessment, and provides recipients and their families, referring specialist, and family physician with information on transplantation and progress from the time of referral until the transplant is completed. The coordinator also provides direct access to other members of the transplant team. Cyclosporine: anti-rejection drug. The first drug found to be consistently effective for preventing rejection. Cytomegalovirus (CMV): common virus that, while posing no threat to the general population, can be a serious threat to those on anti-rejection drugs.
50 Living with Liver Transplantation Donor memorial service: a multi-faith service to acknowledge and pay tribute to the donors for their gift of life. Donor organ: organ from a donor. Dry run: term used to describe when a planned transplantation is cancelled at the last moment because the organ has been found to be unsuitable. Endotracheal tube: tube placed in the mouth and running down the windpipe. May then be connected to a ventilator to help the person breathe with a minimum of effort. Also allows the lungs to be suctioned. Fungi: microscopic organisms responsible for certain types of infections. Heart monitor: machine which monitors heart rate and rhythm. Hemovac drains: inserted to drain fluid from around the liver. Herpes simplex: common virus responsible for cold sores. Herpes zoster: virus responsible for shingles. HIV: the virus that causes AIDS. Hypertension: high blood pressure. Immune system: the body’s natural defense system against infection and disease. If nothing were done to stop the immune system, it would eventually destroy or reject a transplanted organ. Immunization: vaccination against a disease, such as polio or tetanus, to make a person immune to the disease. Immunosuppressants: anti-rejection drug that works by suppressing the immune system. Infection: attack on the body by viruses, bacteria, or fungi. The risk of contracting an infection is higher during the first few months following a transplant when the doses of anti-rejection drugs are high. Intensive care unit: a specialized unit of the hospital where recipients are taken immediately following the transplant surgery. Average stay is 2 to 7 days. Intravenous lines: tubes inserted into the veins with a needle to allow easy access to the blood system for administering fluids and drugs. Jaundice: yellowing of the skin and whites of the eyes. Lesion: any abnormal localized change in the body, particularly a wound or swelling. Lymph node cancer: cancer of the body’s lymph nodes. Possible complication of the long-term use of anti-rejection drugs. Also referred to as lymphoma. Mycophenolate mofetil: anti-rejection drug. Used with cyclosporine or tacrolimus and steroids to prevent or treat rejection.
Living with Liver Transplantation 51 Nasogastric tube: tube entering the stomach through the nose. Removes gas and fluid from stomach to help prevent nausea and vomiting. Nausea: feeling of sickness in the stomach, often accompanied by a loathing for food and an involuntary impulse to vomit. Occupational therapist: specialist who can help develop or restore skills that are needed to look after oneself, to return to work, or to engage in sports and other activities. Opportunistic infections: infections that occur in weakened hosts, such as immunosuppressed patients. Oral thrush: fungal infection of mouth or throat characterized by white patches and ulcers. Orthotopic: transplantation where the donor organ is transplanted into exactly the same place the organ normally is in. Pager: electronic device carried by those on the active waiting list so they can paged as soon as an organ becomes available. Palpitations: when you can feel your heart beating at a faster or irregular rhythm. Physiotherapist: specialist who prescribes and helps with a series of physical exercises to speed recovery. Pneumocystis jiroveci pneumonia: a serious type of pneumonia more common in people whose immune system is suppressed. Pre-transplant assessment: assessment involving medical tests and interviews by transplant team members to determine whether transplantation is the best treatment option. Prednisone: anti-rejection drug. Steroid similar to the one the body produces normally. Prophylaxis: medication given to prevent a potential problem from occurring. Psychologist: specialist who is available to help with psychological concerns such as coping with stress, understanding mood changes, and managing pain. Rejection episode: the recognition by the immune system that the transplanted organ is not its own. Usually a temporary, reversible event. Side effects: effects of medications incidental to the intended or desired ones. Sirolimus: anti-rejection drug. Sputum: saliva and mucus from the respiratory tract. Steroid: type of medication used to help prevent and treat rejection. Stress: a person’s physical and emotional response to changes in their lives, such as anxiety, depression, muscle tightness, or shortness of breath.
52 Living with Liver Transplantation Support group: group of people who are waiting for transplants, as well as those already transplanted. The purpose of the group is to provide information and mutual support to transplant patients and their families while they wait for a transplant. Tacrolimus: anti-rejection drug. Used with steroids and/or azathioprine to prevent or treat rejection. Transplant clinic: medical clinic where the recipient’s health and the heath of the transplanted organ are monitored following discharge from the transplant unit. Transplant unit: a specialized unit of the hospital where recipients are taken following the stay in intensive care. Urinary catheter: tube which keeps the bladder drained until normal body function returns. Vaccination: medication treatment, usually injected, to build resistance to and thus prevent contracting an infectious disease. Variceal bleed: when blood is redirected to smaller vessels (usually in the esophagus, abdomen, and rectum), filling them and causing them to become dilated so that they become more easy to injure and prone to bleeding. Viruses: microscopic organism responsible for certain types of infections.
Living with Liver Transplantation 53 Notes
54 Living with Liver Transplantation Notes
Living with Liver Transplantation 55 For more copies, go online at http://vch.eduhealth.ca or email [email protected] and quote Catalogue No. FK.754.L58 © Vancouver Coastal Health, December 2011 The information in this document is intended solely for the person to whom it was given by the health care team. www.vch.ca