Cirrhosis Page How the Liver Works 3 What is Cirrhosis? 4 Symptoms of Cirrhosis 5 Managing your Cirrhosis Symptoms 6 How is Cirrhosis Treated? 12 Cirrhosis: Serious Illness- Serious Decisions 17 Other Important Advice for People with Cirrhosis 21 Keeping Mentally Healthy 23 Sources of Support 27 Other Resources for You 29 In the United States about 3 million people have a serious, life-threatening disease of the liver called cirrhosis. The purpose of this booklet is to give you some important information about cirrhosis. It explains what cirrhosis is, how it s treated, and describes many of the issues faced by people with cirrhosis and their loved ones. Of course, the information in this booklet cannot take the place of discussions with your doctor, the health care team, and your loved ones. We hope that the booklet will help you with those discussions. How the Liver Works The liver is one of the largest organs in your body. The liver is essential in helping your body function. You cannot live without it. Some of the important tasks of the liver include: removing and neutralizing poisons from the blood making chemicals to control infections removing germs and bacteria from the blood making proteins that help your blood clot controlling the blood s fluidity making acids (like bile) to help the body absorb fats and process cholesterol helping process and store sugar (carbohydrates) and vitamins
What is Cirrhosis? Cirrhosis occurs when tissue in the liver gets damaged and is replaced with scar tissue. Unlike normal, healthy tissue the scar tissue blocks the flow of blood through the liver. As scar tissue chokes off the blood vessels, the normal structure of the liver is changed and blood cannot move normally through the tissue. When this happens the liver cannot carry out its essential functions (like removing toxins, storing vitamins, etc.). Cirrhosis has many causes. The two most common causes of cirrhosis are extensive alcohol use and hepatitis C. Cirrhosis due to alcohol use (also called alcoholic cirrhosis ) usually develops after many years of heavy drinking. Alcohol damages the liver by interfering with the normal processing of proteins, fats and carbohydrates. Alcohol can also trigger the body s immune system to react by triggering a inflammatory process that damages and kills cells in the liver. The liver can become larger with extra fat, then shrinks as scars and abnormal cells develop. Cirrhosis due to hepatitis C develops because the infection leads to inflammation. Inflammation of in the liver can injure or destroy liver cells. When severe, the cell damage continues to get worse and scar tissue builds over the liver. In some cases the liver will also shrink. Symptoms of Cirrhosis Most people with cirrhosis have no symptoms in the early stages of the illness and don t know that they have it. As more liver tissue gets destroyed and more scar tissue replaces the healthy cells the liver has more trouble working. When the liver begins to malfunction a person may begin to experience a variety of symptoms that worsen over time. Some of the common symptoms include: Fatigue and exhaustion Loss of appetite Nausea Weakness Weight loss Even with these symptoms, many people do not learn that they have cirrhosis. Unfortunately, cirrhosis usually progresses and complications develop. Often people do not learn they have cirrhosis until they develop complications. Loss of liver function can affect the body in many ways. The following table lists some common complications and their causes. 2
Complication Edema (swelling in the legs) OR Ascities (swelling in the abdomen) Bruising OR Bleeding Jaundice (yellowing of the skin or eyes) Itching Varices (enlarged blood vessels) Problems with other organs Cause Fluid builds up in the body because the liver cannot make proteins which help the body get rid of excess fluid. The liver cannot make enough proteins that help the blood clot. The liver cannot absorb and process certain acids (like bile) which then stay in the blood stream. The liver cannot absorb and process certain acids (like bile) which then get deposited in the skin. As blood flow gets blocked in the liver blood backs up into blood vessels in the stomach and esophagus. These blood vessels are not able to handle this much blood. They get enlarged and their thin walls can burst under pressure, leading to severe internal bleeding. Many other organs depend on the liver to help them function properly. Liver malfunction can cause infection and dysfunction in organs like the intestines or kidneys. Managing Your Cirrhosis Symptoms How is Cirrhosis Treated? Unfortunately liver damage from cirrhosis cannot be reversed and cirrhosis cannot be cured. Even through there is no cure for cirrhosis, it can be managed in a number of ways. A variety of treatments are available that can stop or delay additional worsening of the disease and can reduce complications. Once your providers learn the causes and severity of your cirrhosis they can select the proper treatments. If you follow a complete cirrhosis care plan your symptoms will be controlled as well as possible, and you may be able to avoid hospitalizations. When cirrhosis has been caused by alcohol use, the best and first treatment is to stop drinking. When cirrhosis is caused by hepatitis certain medications (interferon, corticosteroids) may be used. For all patients with cirrhosis following a healthy diet and avoiding alcohol are essential treatments. Many treatments also focus on dealing with cirrhosis complications. For example, inpatients with edema or ascites, a low-salt diet or the use of diuretics (water pills) may help reduce the build up of fluid. Cirrhosis: Serious Illness Serious Decisions People with serious illnesses such as cirrhosis must understand that cirrhosis and its complications are often life-threatening illnesses. It is possible that you have already faced a sudden illness that threatened your survival. During sudden illness decisions might need to be made about what medical treatments should be used (or should not be used) to try to prolong a person s life. Such decisions might include whether to use a mechanical ventilator to breathe for the person or whether to use cardiopulmonary resuscitation (CPR) if the person s heart stops. 3
The patient and doctor working together usually make treatment decisions like these. If a patient is too sick to participate in a discussion, a loved one usually represents the patient in decision making with the doctor. People with advanced cirrhosis often have questions about life prolonging treatments as they discuss their treatment wishes with doctors and their family. People may have strong beliefs about what would be important to them if they became so ill they were likely to die. Things that patients often think about include: How important is it that I live as long as is possible, even if my quality of life might not be good? How important is it that I feel that everything was done to help me live longer? Do I want relief of pain and discomfort to be my highest priority? How important is it that I am kept comfortable, even if I might not live as long? How important is it to me that I spend the time I have left at home, surrounded by those who care for me most? How do I feel about being in the hospital? Or a nursing home? How important is it for me to be alert or able to communicate with my loved ones? How much do I want my family to be involved in treatment decisions? For many people, all of these questions are important, and your doctor will try to help you reach your goals whenever possible. Unfortunately, in making treatment decisions you might have to trade one goal, for instance maximum comfort, for another goal, for instance a chance to live a little bit longer. What you should know about CPR During serious illnesses, it is not uncommon for a person s heart to suddenly stop beating, or to beat irregularly. This will often cause the person to stop breathing, the person will lose consciousness, and death will follow if nothing is done. Sometimes cardiopulmonary resuscitation (CPR) can prevent death. For a person who is young and healthy CPR can sometimes return the person to their prior state of health. But for seriously ill persons CPR allows the patient to live long enough to leave the hospital has a success rate of less than 5% of the time. Of the small number that do survive CPR itself, an even smaller number return to the condition they were in prior to receiving CPR. They are often weaker, may have brain damage, or be in a coma. Because of the low chance for survival, many people decide that if their heart stops they would not to receive CPR. In this case, the medical team will put a notice in the medical chart showing the person s wishes that the doctors do not resuscitate (often called DNR ). What you should know about mechanical ventilation As described previously, when a person is not able to breathe on his own a breathing machine is needed to do the breathing. Unfortunately, if it is needed, it is impossible to know for how long. It is good to think ahead about whether you would want to be on a breathing machine, and under what circumstances. Some people feel that living with the help of a machine is unacceptable to them since it would severely limit their lifestyle and the quality of their life. Others are willing to be on a ventilator in specific situations, for example, if it was needed for a short time during an acute illness and could be removed after the illness. Other people feel they would always want to live as long as possible, even if it means living on a ventilator and even if it meant a poorer quality of life than they are accustomed to. If a person is sure he would never want to be put on a ventilator, the medical team will put a notice in the medical chart showing the person s wishes that they do not intubate (often called DNI ). If a person is willing to be 4
ventilated only in particular circumstances, this can be documented also. We recommend you talk to your doctor about your wishes regarding using a ventilator. Planning for the future Once you have had a chance to think about what types of treatments you might want (or not want), and in what circumstances, it is a good idea put your wishes in writing. We recommend signing an advance directive, a formal, legal document which names someone to be your spokesperson (in case you are too sick to speak for yourself) and or instructs the medical team about your wishes for life-sustaining treatments. If you are designating someone to represent you make sure that they understand your wishes. For many people, talking with their family and friends is an important part of the decision making process. Family and friends often know you better than anyone else, and they can understand your goals and what is important to you. If you want your family or friends to be involved in your care, we encourage you to include them as part of the decision-making team and bring them with you to appointments. Sometimes family members and friends often have strong opinions about different treatment options. While many patients incorporate those opinions into their decisions, remember that treatment decisions should meet your goals and feel right to you. Other Important Advice for People with cirrhosis 1. Watch for early symptoms and respond quickly. If you respond quickly to the first signs that your cirrhosis is getting worse, you can often prevent visits to the ER or hospitalizations. Here are some warning signs that should lead to call your care manager: If you have been following your treatment plan and your symptoms are still getting worse, be sure to call your care manager as soon as possible. We may be able to help without you having to come into the hospital. 2. Stay away from things that make your cirrhosis worse. Don t drink any alcoholic beverages. If you are drinking, talk to your care manager about the resources available for helping you quit. 3. Stay Active. You will probably need more rest now than you are used to, but there is no need to stop doing the things you enjoy as long as you feel able to do them. Take things one day at a time, enjoying life as much as possible, and sharing it with others. Seeing other people and maintaining a social life are important. Exercise can be beneficial for some people. Using your body can make you feel better about yourself, help you get rid of tension or anger, and build your strength and appetite. Be sure to ask your doctor what activities are okay for you to do. 4. Eat regular, healthy meals. Getting good nutrition is a very important part of feeling as good as possible. 5. Follow your doctors instructions exactly. Many people s symptoms get worse as a result of not taking their medications properly or not following medical advice. Most medicines won t work well if they are not taken at the proper time and in the correct amount. (In some cases the wrong amount can be harmful!) If you feel that you cannot do what the medical team tells you, you need to explain this to your provider (they can t read minds!). They may not know about side-effects or other reasons you might have for wanting to stop taking your medicines. Always talk with your provider before stopping. Alternative treatments may be available. 5
Keeping Mentally Healthy Knowing that you have a serious illness like cirrhosis can lead to many emotions. This is a time to call on family and friends for support. Think back to other hard times and how you managed to make it through and maintain hope. Common feelings and reactions of cirrhosis patients: Guilt. For example, a lot of times people wish they had taken better care of themselves when they were younger, or wish they had quit drinking a long time ago. Anger. Sometimes serious illness causes people to attack or lash-out at family or friends. It is natural to be frustrated when you cannot do what you want or need to do. Fear. Going through many physical changes, feeling your body getting weaker, losing a sense of control, and the unknown future can all be very scary. Sadness. You may not be able to do as much as you could before. You may be unable to do all that you had planned or hoped to do. These are all very normal and understandable reactions. They are just a few of the reactions to cirrhosis that patients and their families have. It is normal to have a lot of different emotions as the illness and your treatments change the way you feel, affect your life, disturb your routines and strain your relationships. Be aware that conflicting or confusing feelings can make it very difficult to make decisions about your treatments. Learning some ways of coping can help you deal with some of the emotions you may be having. Coping Strategies As we have already discussed, having cirrhosis causes many changes in your life: your activities, your responsibilities, your hopes for the future, and your thoughts about who you are. This can often be very stressful and emotionally draining. The ways that you choose to cope with your illness and its effects will help determine the quality of your life. There are a few ways of coping that are quite simple but can be very beneficial as well. 1. Talking about it. Share your thoughts, feelings, symptoms, etc. with people around you. Say what you are going through and help others understand what is going on with you. 2. Taking control. Decide how you want to live this part of your life. Write down your wishes. Get involved with your treatment by asking questions and communicating your concerns. Let the medical team and your loved ones know when you need something or when something is not going well. Sometimes you may want to have a family member be your spokesperson. 3. Doing pleasurable activities. Allow yourself to spend time doing things that you enjoy. This can be anything you like. Some examples might be: listening to music or a radio program, visiting with friends/relatives, eating a favorite meal, doing a crossword puzzle, watching a sunset or sunrise, or watching a movie. 4. Relaxation exercises. Using a few simple relaxation techniques is an easy way to reduce tension, stress, and even symptoms like fatigue and pain. Relaxation can be as simple as just sitting for 10 minutes in a quiet place and taking slow deep breaths. We describe a few relaxation techniques on page 8. Your Care Manager may be able to recommend other helpful techniques as well (meditation, biofeedback, imagery, etc.). 5. Keeping a diary or journal. Many people find it helpful to have a private place to write down their thoughts and feelings in difficult times. Keeping a record of your activities and thoughts can help you understand your feelings and symptoms. Pathways of Caring has provided a journal for you with your notebook. 6
6. Try something new. Trying out a new hobby or learning a new skill can be fun. It could also distract you from bothersome symptoms or reduce your level of stress. How will this affect my loved ones? Any serious illness can put stress and strain on the family. Cirrhosis can be difficult for your loved ones too. Just like you they may be feeling mixed emotions. It may be difficult for them to get used to the idea that you are very ill. It may result in new responsibilities for them. They may worry about how you are doing. Commonly, they can t imagine life without you. As you become more ill, they may be uncomfortable talking about the situation because it scares them or because they worry about upsetting you. They may think, I just don t know what to say or they may worry about saying the wrong things. You can help them just by talking openly about your illness, your hopes or needs, how you are feeling and your fears. Sharing information about your illness can make your family feel more included and less anxious. They will also understand better what you are going through if you share your illness experiences with them. A common fear among patients is that they may become a burden to their family. If you have thoughts about this we encourage you to talk about it with your care manager and your family. We have many resources that can help you and your family deal with the physical job of caring for your illness, as well as the feeling that arise from that job. In our experience with many patients like you we have also found that serious illness can have many positive outcomes as well as negative ones. It can provide an opportunity for patients and their loved ones to remember old times, resolve important personal issues, and spend some close personal time together. Sources of Support Natural Support Systems Most people don t realize it, but they already have support systems: their friends, family, neighbors, co-workers and others already in their lives. Just talking about your situation and sharing your feelings with other people can be beneficial to you. It may be hard to ask for help but it may help you get through tough times. Your family and friends likely can comfort, encourage and support you in ways that no one else can. In addition to listening, people close to you can help you in other ways. When people offer to help, take them up on it. Professionals: social workers, counselors, psychologists, etc. The VA has many support services available to you and your family. Some patients find it helpful to meet and talk with others who are going through the same illness. The VA has support groups for this purpose. For people who need more structured and personalized help than a group session, meeting individually with a social worker, counselor or spiritual advisor may be a good option. They can help you adjust to and cope with many of changes you and your family will be going through. Sometimes it may be easier to talk to strangers about what is going on. For your convenience, many of these services can be provided to you in your home or over the phone. Church and spiritual advisors: chaplains, ministers, rabbis, and other spiritual advisors, etc. In times of serious illness and life changes some people find comfort and strength from prayers, rituals, or guidance from their spiritual advisors. It is also a time when people question their place in the world, the meaning of their life, the actions of God or even their faith in general. Spiritual advisors are usually very experienced in helping people and their families with these issues. The VA has a number of chaplains (from different faiths) on staff who are available to 7
help you with these types of issues. Ask your care manager about getting in touch with someone who can help you with any spiritual issues. Other Resources for You Transportation Let us know if you are having difficulty getting to your doctor s appointments or your treatments. There are resources available such as DAV (Disabled American Veteran s), ACCESS-Private Transportation Co., Senior Ride, and taxi coupons. Your care manager and the Pathways social worker can help you make transportation arrangements. Other Health Care Services: Home care, visiting nurses, family caregiving Home health care may not be necessary for long term but may be helpful during transitional periods, for example when you are starting new treatments or when things seem difficult to manage. Today, both basic and technical care can be brought to your home where you can receive treatments in familiar surroundings and in the company of your loved ones. In addition, home health staff can teach you and your family members how to use and manage new equipment or treatments in the comfort and privacy of your home. Some of the staff that may be caring for you in the home include: nurses, therapists, home care assistants and social workers. The home care staff can help you to remain in control and teach your family how to care for you as well. In certain situations, money may also be available to help a friend or family member care for you at home (called In-Home Supportive Services ). Ask your Care Manager if you would like to know more or would like to receive home health services. Hospice and Palliative Care When the time comes that your doctor feels that your care should be focusing on comfort only, you may want to know more about Hospice care. Hospice is a philosophy that guides care for persons with serious illnesses. Hospice care is focused on palliative (or comfort) rather than cure, with an emphasis on pain and symptom control. Hospice provides a variety of services so that a person may live the last days of life fully, with dignity and comfort, at home or in a home-like setting. A choice to bring in Hospice, does not mean giving up. It simply means your comfort will be the main goal while working hard to treat your symptoms and respecting your particular lifestyle. Some other facts about Hospice: Hospice treats both the patient and the family Hospice works as a team and has a variety of resources to meet your needs (physical, emotional, spiritual, social, financial, etc.) Hospice is available 24 hours a day and 7 days week Hospice follows the plan that you and your doctor have decided on Hospice includes all equipment and medications Hospice care can be provided at home or in a nursing home Hospice can be discontinued at any time Talk to your care manager about any questions you may have about Hospice care. If you think you and your family would like to receive Hospice care, your care manager can set this up and make the arrangements for you. 8