Living with Cirrhosis

Living with Cirrhosis a guide for people with hepatitis-related cirrhosis Infoline: 1300 437 222 (1300 HEP ABC)

Living with Cirrhosis is published by Hepatitis Australia and funded by the Commonwealth Department of Health and Ageing. Hepatitis Australia June 2012 Acknowledgments We thank those individuals who contributed to this booklet by sharing their stories about the experience of living with cirrhosis. We are also grateful to individual members of Hepatitis Australia s Health Reference Group, Community Reference Group, National Resource Network and also the Digestive Health Foundation for their contributions to the development of this booklet. Disclaimer Hepatitis Australia takes care to ensure the information provided in this booklet is accurate, however, it is for general information only and not intended as medical advice. Hepatitis Australia encourages all readers to seek independent medical advice before making any decisions based on the information provided in this booklet. 895591 HEPAUS Cover.indd 2 13/12/12 1:37 PM

Contents Is this booklet for me?.............................. 2 The liver and cirrhosis.............................. 4 About the liver...................................... 4 How does viral hepatitis lead to cirrhosis?........6 Compensated and decompensated cirrhosis.... 7 What might happen to me?....................... 8 Symptoms of cirrhosis..............................9 Symptoms related to. complications of cirrhosis.........................10 How do I maintain my health and well-being?. 15 Working with your healthcare. team to monitor your health..................... 15 Relationships and support........................ 18 Alcohol, tobacco and illicit drugs................ 20 Medications and complementary medicines... 21 Nutrition & appetite.............................. 21 Managing fatigue................................ 24 Dental and oral health............................ 26 Hepatitis anti-viral treatment options......... 27 Hepatitis B treatment options................... 27 Hepatitis C treatment options................... 28 Summary.......................................... 30 Glossary........................................... 32 Bibliography...................................... 34 Information and support........................ 35 Hepatitis Australia................................ 35 State and territory hepatitis organisations..... 36 Other useful contacts............................ 37

Is this booklet for me? T his booklet is for people who have recently been diagnosed with cirrhosis as a result of chronic (longterm) hepatitis B or hepatitis C infection. Being diagnosed with cirrhosis can create anxiety about the future as you may not know what to expect. The booklet aims to help you to understand: What the liver does and how cirrhosis affects the liver The symptoms and complications of cirrhosis Ways of maintaining your health and well-being Ways to get further consumer information and support. It is important to keep in mind that the majority of people diagnosed with early cirrhosis will continue to feel well for many years. Regular visits to your GP and specialist will help to ensure that if complications develop they are discovered early, giving you and your healthcare team the opportunity to manage any complications and 2

achieve the best possible outcome. There are also steps you can take to protect your liver from further damage and in some cases even improve your liver function. Knowing more about cirrhosis and how it can affect you is a key step to you having greater control over your health and well-being. It may also be helpful for those people who are close to you, to read this booklet. If they can understand how cirrhosis might affect you they will be in a better position to offer appropriate support as needed. All of a sudden I realised I had a disease which I was utterly ignorant about 3

The liver and cirrhosis About the liver The liver sits on the right-hand side of your abdomen, behind your ribs.it is the largest internal organ in your body, weighing around 1.25-1.5 kilograms in an adult.you cannot live without a liver, however, it can still function, even if a lot of it is damaged or removed.it is the only organ in your body that has the ability to regenerate itself.the liver is often described as the body s factory as it carries out so many vital functions. Food and other products you take into your body are broken down mostly in the gut and absorbed into the bloodstream.the bloodstream takes these products to the liver factory for processing.as blood passes through the liver, it works continuously to break down these products further.the liver has the important job of getting rid of harmful products and further processing the useful products so that your body can use them when it needs to. 4

Importantly, the healthy liver: Filters and cleanses the blood Removes bacteria and helps fight off infection Removes waste products and..toxins (e.g.alcohol and drugs) from your body Gathers, stores and then releases energy when you need it Stores vitamins and minerals including iron for later use Produces bile to help digest food Makes enzymes or chemicals which perform many different tasks e.g. to help your blood to clot and to repair damaged tissue Produces hormones and helps keep the right balance of hormones in your body. Right lobe Inferior vena cava Hepatic artery Left lobe Gall bladder Portal vein 5

How does viral hepatitis lead to cirrhosis? Together, chronic (long-term) hepatitis B and hepatitis C infection are the cause of more than half of all cases of cirrhosis.other common causes of cirrhosis include liver disease caused by longterm excessive alcohol consumption, or obesity. A range of less common conditions can also result in cirrhosis. I had no idea that hepatitis C could cause cirrhosis. I thought cirrhosis came from drinking too much alcohol. I wasn t a big drinker at all cirrhosis was the last thing I expected to have. Chronic infection with hepatitis B or hepatitis C can lead to liver inflammation.if the inflammation is significant and continues over many years, the healthy liver tissue is replaced by scar tissue (fibrosis) and lumps (nodules). Liver disease generally occurs slowly but it can develop faster in people who have a combination of health issues which affect their liver or immune system.cirrhosis is the stage of liver disease where scar tissue and lumps have replaced much of the normal healthy liver tissue making it hard and stiff. I didn t have much knowledge about cirrhosis at the time, and it hit home to me what effect hepatitis C has had on me. 6

Compensated and decompensated cirrhosis In compensated cirrhosis, while there is extensive scarring throughout the liver, enough healthy liver cells remain and sufficient blood flows through the liver to enable it to keep working reasonably well. In decompensated cirrhosis, the severity of the scarring means the liver can no longer carry out its many functions adequately. The ability of the liver to keep working even when substantial liver damage has already occurred means the majority of people with compensated cirrhosis will continue to feel well for many years. Studies have shown that at a 10-year follow up, around 80% of people still had compensated cirrhosis and had not developed significant complications. Healthy liver Cirrhotic liver 7

What might happen to me? I t used to be thought that once cirrhosis had developed the damage was permanent. More recent studies have shown that the severity of liver scarring can be reduced following successful treatment of hepatitis B or hepatitis C infection allowing the liver to function more efficiently. Doctors often use a scaling system to assess the severity of cirrhosis and check whether compensated or decompensated cirrhosis is present.they judge that cirrhosis is decompensated if, using a range of tests, there are signs that the liver is no longer able to function as it should..as the liver performs many vital functions, when it starts to fail it can have an impact on almost every part of your body. I wanted to know it can be easier to deal with it if you know what to expect. 8

Symptoms of cirrhosis You may have no noticeable symptoms of cirrhosis although it is important to remember that having no symptoms does not mean that liver damage is not present or progressing. A wide range of symptoms may arise if the normal functions of the liver are affected by liver disease. These include: Low energy levels Poor appetite which may be accompanied by nausea and vomiting Weight loss and/or loss of muscle mass particularly in the upper body Tenderness over the liver area Small spider-like blood vessels on the chest, back or arms (known as spider naevi) Red blotches on the palms (known as palmar erythema) Poor sleep patterns Vagueness and poor concentration Thick square fingertips (known as clubbing) 9

Fluid accumulation around the abdomen and/or ankles Enlarged breasts (known as gynaecomastia) and shrunken testes in men Loss of menstrual periods in women Hair loss Loss of sex drive Lower tolerance to alcohol and drugs Higher sensitivity to prescription medicines Thinning of bones, bone fractures Jaundice - yellowing of the skin and whites of. the eyes and darkening of the urine. Symptoms related to complications of cirrhosis Sometimes symptoms related to complications of cirrhosis can appear without much warning; it is therefore useful to know what to look out for and what to do if they occur. I wanted to know more about the symptoms of cirrhosis and whether these symptoms meant cirrhosis was progressing more rapidly. Bleeding varices As scarring in your liver increases, blood cannot flow in and out of the liver as it should.this causes pressure in the portal vein (which delivers the blood to the liver), to rise, a condition called portal hypertension.. As the pressure builds up, new blood channels by-passing the liver develop at the lower end of the food pipe (oesophagus) and in the stomach.here the veins (varices) become puffed up with blood making them fragile and causing them to bleed easily. 10

One of the major consequences of portal hypertension is bleeding varices. Your liver specialist may arrange a screening procedure called an endoscopy. This is performed under sedation and involves a thin tube being inserted into the mouth and down your food pipe.if any varices are found they can be treated and medications can be taken to help reduce the high pressure in the portal vein and the risk of leaking or burst varices. An endoscopy while it seems scary is just a day procedure. The first sign of bleeding varices may be black tarry faeces (bowel motion) as blood leaks into the gut from damaged varices.it is important to seek medical attention without delay if you notice this symptom so that you can be given medicines to reduce the high pressure in the portal vein and the risk of further bleeding.some procedures may also be needed to find the exact location of the bleeding and determine how best to stop it.. Varices can suddenly burst.if this happens you will probably feel an urgent need to go to the toilet, where you may have bloody faeces (bowel motion) or vomit what may be large amounts of blood.if this occurs it is essential that you seek urgent medical attention at a hospital emergency department. Doctors will need to administer fluids into your veins and also locate and stop the bleeding as soon as possible.this must be done in a hospital.you will usually require an urgent endoscopy performed under general anaesthetic or sedation to locate and stop the bleeding. During the endoscopy, rubber bands may be applied to the varices to stop the bleeding. If bleeding continues, your doctor may recommend that a wire mesh tube (a stent) is put into the liver under x-ray guidance to reduce the pressure in the varices. 11

after banding it felt like I had something stuck in my oesophagus, but it went away after a day. Risk of bleeding Under normal circumstances your liver makes blood products to help your blood to clot, for example, when you cut yourself or have an operation.when you have cirrhosis, your liver isn t able to make these blood products effectively and you have an increased risk of bleeding. To guard against this you may be given medicines, or blood products that help your blood to clot.in addition, low levels of platelets in your circulation may add to the risk of bleeding.before having any medical, surgical or dental procedure you should ensure the doctor or dentist knows about your cirrhosis to ensure the best outcomes. If you cut yourself, apply pressure and bandages.you should seek medical attention without delay if you have bleeding from any cause which does not stop. Ascites and oedema Ascites is another consequence of portal hypertension in which fluid from the surface of the liver and intestine leaks into the abdominal cavity. Oedema or swelling of the legs and ankles is quite common in cirrhosis.both ascites and oedema can build up over time and your healthcare team should be informed if changes occur.severe ascites causes a visibly enlarged belly and can cause pain and make it hard to breathe and eat normally. Your healthcare team will talk to you about ways to manage ascites and oedema.having a low salt diet and taking diuretics (water tablets) may be 12

recommended. Some people with severe ascites may also benefit from having the fluid drained out of their tummy with a needle and tube. One of the major risks associated with ascites is that infections (peritonitis) can occur. These require urgent treatment with intravenous antibiotics as left untreated your health can quickly deteriorate. If you have ascites and develop a sudden fever, nausea, vomiting, or abdominal pain, you should seek urgent medical attention. Long term oral antibiotics may be given to help prevent future infections. Hepatic encephalopathy If your liver is unable to get rid of waste products such as ammonia or other toxins they begin to build up in your bloodstream and reach the brain, causing harm to the nervous system. This condition is called hepatic encephalopathy..it can occur in bouts or be more constant.many people with cirrhosis experience repeated episodes of hepatic encephalopathy which can be triggered by problems such as infections, constipation, dehydration, alcohol, certain medicines including tranquilizers, or a bleed. Others may have more constant symptoms which, depending on their severity may be quite obvious or more subtle. Family and friends are often the first to notice symptoms of hepatic encephalopathy, which include disturbed sleep patterns (e.g. sleeping during the day and awake at night), difficulty concentrating, confusion, bizarre behaviour which is out of character, or becoming increasingly sleepy and hard to wake.it is important to seek medical attention without delay, so that the cause of the 13

encephalopathy can be identified and treated,. or other treatment started. One of the main treatments for encephalopathy is lactulose (a sweet syrupy medicine). Enough is given so that one to two soft bowel movements occur each day.this not only prevents constipation which can trigger an episode of encephalopathy, but also helps the body remove the toxins that build up when the liver is failing.improving nutritional intake with a high energy diet and supplements may be considered.it is important that people with encephalopathy do not drive and that family and friends are aware of the early signs of an episode so that medical attention can be sought. Liver cancer and liver transplant All people with cirrhosis are at increased risk of developing a primary liver cancer called hepatocellular carcinoma (HCC). Because of this, screening to detect liver cancer is part of the regular monitoring for people with cirrhosis, usually with a painless ultrasound. It is natural for any cancer screening test to cause some anxiety, however, it is important to keep in mind that if a cancer is detected early, treatment options and outcomes are far better than if it is detected later. If your liver is very badly damaged and you have significant complications of cirrhosis or liver cancer, a liver transplant may be considered.this is a procedure where a diseased liver is removed and replaced with a healthy donor liver.transplants can offer both improved quality of life and a longer life span, however they are a major undertaking and are usually only considered if all other treatment options are no longer helpful. 14

How do I maintain my health and well-being? W hen you have cirrhosis there is a lot to think about.becoming more knowledgeable about your liver disease, finding out how best to work with your healthcare team, and taking steps to keep yourself as healthy as possible will help you feel more in control of your health and well-being... Working with your healthcare team to monitor your health The healthcare team is made up of a range of health professionals that can assist you to manage your cirrhosis.the team usually consists of a liver specialist (gastroenterologist or hepatologist), hepatology nurse, social worker and nutritionist. Where possible, your GP will also be involved in monitoring and managing your cirrhosis in consultation with the specialist and hepatology nurse. 15

All people with cirrhosis will require regular visits with a liver specialist and healthcare team.these appointments are set up to carefully monitor your liver health and adjust your treatment to maintain your health.various blood tests and scans will be undertaken to assess how well your liver is functioning and look for any complications of cirrhosis. You will be asked to have a range of regular blood tests to monitor your health.these blood tests will for example, assess how well your body is making the substances needed for your blood to clot and. look at your haemoglobin level (red blood cells) to make sure it is stable and there are no signs of internal bleeding. Other blood tests are taken to help assess how well your liver is working. Your specialist will also examine you to assess for signs of liver disease such as fluid accumulation around your tummy or ankles, red blotches on your palms, thick square finger tips and small spider-like blood vessels on your chest, back or arms..a regular endoscopy is recommended, usually every year, to check for the development of varices.every six months a liver ultrasound test and blood test will be taken to look for liver cancer.your specialist may also want you to have a Fibroscan test intermittently to assess any changes to the level of scarring in your liver. Feeling a bit anxious about what the test results might show is normal.it is important to remember that most people with compensated cirrhosis will stay well for many years,..but the earlier any problem is found the better it can be managed to maintain your health and well-being. 16

When you feel well and are leading a busy life it can sometimes be harder to give a high priority to your liver health check-ups. However, one of the most important things you can do to help yourself stay well in the long term is to make sure you keep all your medical appointments.this is a very important part of looking after yourself for the long term when you have cirrhosis. Keeping a record or diary of your various appointments, questions you want to ask, results of tests, dietary and other advice given, current medications, symptoms, and important phone numbers can help you keep track of everything over time.you may like your principal support person to have access to the record or diary and accompany you to appointments. I wanted to know how to deal with cirrhosis medically, emotionally and physically including what to do about my diet. 17

Relationships and support Cirrhosis can affect personal and family relationships. Maintaining good relationships with family and friends can be more difficult when you are lacking in energy to contribute to household chores or socialise. Some people may lose confidence in social situations due to the symptoms of cirrhosis which change the way they look.lack of sex drive is also very common which may put a strain on relationships or make you think twice about starting new relationships. I have avoided having relationships since my diagnosis (of cirrhosis). I just feel that I have enough on my plate and really don t want any additional baggage. In a family situation, it may be helpful for your partner to read this booklet so that they. can understand how cirrhosis is affecting you, appreciate your limitations and know what support you may need. How much information you give your children depends on the age of the children and how much you personally feel they need to know. Finding a little bit of time to stay connected with people you are close to is an important aspect of maintaining your well-being.if you want to catch up with friends but feel too tired to go out, you could invite them over for a cup of tea, or just call them for a short chat on the phone. 18

Sometimes in social situations you may feel you are being judged because you have cirrhosis due to its links with excessive alcohol use.it is important to remember that you do not need to tell people that you have cirrhosis.before talking about your cirrhosis in social situations it is worth asking yourself whether there is any benefit to you in telling the person you have cirrhosis, if not, then it may be best to avoid the topic. At social gatherings, there s often pressure to have a drink. When I say I can t because I have cirrhosis, people are often shocked and act like I have been a big drinker in the past. The reality is I haven t. Often the people you are close to are keen to provide support, however, they may need some guidance from you to work out how they can help out.having some support available when you most need it can make a big difference..you may like to consider joining support groups offered by your local hepatitis organisations or the National online support network, Hep C Australasia.(See contacts section). 19

Alcohol, tobacco and illicit drugs Consuming alcohol, tobacco and illicit drugs will put additional stress on your liver when you have cirrhosis as your liver cannot remove toxins as well as it does in a healthy liver. Drinking alcohol may cause your liver disease to progress faster. I don t think I realised how important it was to stop drinking. I felt OK, so I thought I was OK. To maintain your health when you have cirrhosis, liver specialists recommend that you avoid alcohol and illicit drugs and give up smoking. To stop drinking alcohol and to quit smoking can be very challenging, even for people who don t consider their drinking or smoking to be excessive. Giving up illicit drug use can be equally difficult. Your healthcare team will be able to discuss your needs with you and provide details of relevant services to assist you. The support of your family and friends will play a key part in helping you to stay on track with your goals. Remember that when trying to completely give up any addictive substance such as alcohol, tobacco or illicit drugs you may encounter setbacks. Try not to view these setbacks as failure, instead use them to learn more about what triggered the setback and from that you may discover strategies that work better for you next time. 20

Medications and complementary medicines Prior to taking any form of medication that has not been prescribed by your regular doctor or specialist it is important to check that it is safe to take if you have cirrhosis. Also keep in mind that the dose of a specific medicine may need to be reduced. With cirrhosis the liver does not break down medicines as well as it should, so the medicine could build up in your body and make the effects of the medicine as well as the side-effects of the medicine greater. For a range of safety reasons doctors recommend that you do not take any complementary or herbal preparations if you have cirrhosis. Increased sensitivity to complementary and herbal preparations of any type can occur, also some herbal preparations can be damaging to the liver even in very small quantities and they can also interact with other medications you are taking. The safest course of action is therefore not to take any complementary or herbal preparations unless you have discussed it with your specialist first. Nutrition and appetite Malnutrition is very common in people with cirrhosis and increases the chance of complications. Muscle wasting and lack of energy can be signals that your nutritional intake is insufficient. Keep in mind that the presence of ascites and oedema can make it difficult to assess overall weight loss. You may benefit from a high protein and high energy diet if you are losing muscle or unable to eat normally due to poor appetite or nausea. 21

Improving your nutritional intake can make a big difference to your overall health. A dietician can provide some specific advice on diet and nutritional products, vitamins or mineral supplements that may be needed. Provided you do not need to be careful about the amount of fat in your diet you might like to try some of the following tips to increase your energy and protein intake: Add grated cheese to potatoes, pasta, vegetables, soups and sauces Add cream to curries, pasta dishes and soups Add lentils or beans to casseroles and soups Add a sprinkle of unsalted nuts to breakfast cereal or desserts Add sour cream to vegetables and potatoes Add honey or golden syrup to breakfast cereals Coat fish and chicken in breadcrumbs before cooking Include gravy with meat dishes Stock up on vegetable and fruit juice and some cheese, unsalted nuts and yogurt for snacks Try easy snacks like baked beans, peanut butter or avocado on toast Try smoothies with full cream milk or yogurt, ice-cream, fruit and a drizzle of honey 22

Switch to full cream milk and dairy products Make porridge with milk instead of water Have a nutritional supplement drink each day Try eating 6 small meals or snacks a day if you can t manage big meals Have a snack before going to bed, or if you wake up in the night Have frozen homemade meals and soups available for when you don t feel like cooking. It you have oedema or ascites you will probably be advised to avoid salt in your diet by not adding it to food when cooking or when serving and avoiding foods which have a high salt content.many canned or processed foods can be high in salt, so whenever you can, try to avoid them and instead eat fresh foods. You may not be affected by malnutrition or ascites and are just looking for some information on healthy diets, see the Hepatitis Australia publication Guide for healthy living which is available from your local hepatitis organisation or alternatively it can be downloaded from the Hepatitis Australia website at www.hepatitisaustralia.com Some food products are particularly good for your liver; these include almonds, oats, blueberries, salmon, soy beans, kidney beans, green or black tea, yogurt, broccoli, spinach, pumpkin and vegetable juice. A moderate coffee intake has also been associated with reduced liver inflammation. 23

Managing fatigue Adequate rest is very important for people with cirrhosis.trying to do too much each day can lead to total exhaustion.try to make a realistic plan for your day and allow short periods for rest or relaxation. I experience a lot of tiredness, trying to predict how much energy I ll have to complete something is difficult and I tend to overestimate my energy levels and run out part way through. Most of us know how much sleep we need each night, but generally, 7-8 hours per night is the minimum amount of sleep needed by most people. You may find you get a better night s sleep if your bedroom is well ventilated and not too warm or too cold.having a television in your bedroom can be a distraction.having some time without looking at a TV screen, computer or mobile phone before you go to bed will help..promote a good night s sleep.try also to cut down on caffeinated drinks later in the day and avoid big meals late in the evening.ascites may make it more difficult to get comfortable in bed, so you may feel like you can breathe more easily if you prop yourself up on pillows. Ordinary activities such as shopping, cooking, cleaning, looking after and playing with children and going out to work may become more difficult if you are feeling tired most of the time.fitting in a social life around other necessary activities can,. 24

at times, seem impossible. Planning ahead may help you to sort which activities are most important to you and how you might be able to fit them into those times when you have a bit more energy. Eating foods which contain a lot of sugar can make you feel tired about two hours later..to avoid this, it can be useful to adjust your sugar intake to alleviate some of the symptoms of fatigue. Most people find that the right amount of exercise can actually make them feel more energetic and promote a good night s sleep. Check with your healthcare team which types of exercise are most suitable for you and start gently, slowly building up your strength.yoga, tai chi and walking can often be tolerated by people who can t cope with vigorous exercise.engaging in any form of exercise has been shown to help lift your mood and relieve stress.it is important to do the type of exercise that you enjoy and this might be as simple as walking the dog, or doing some light gardening. 25

Dental and oral health Booking a regular appointment with your dentist to monitor your oral and dental health is a good idea. While symptoms such as dry mouth, tooth sensitivity and decay, gum infections and mouth ulcerations are not specific to cirrhosis, people with chronic hepatitis may experience some of these problems. Keep in mind too, that any kind of infection can create further problems for people with cirrhosis, so consult your dentist for suggestions to improve your oral and dental health. 26