Living with Cirrhosisa guide for people with

hepatitis-related cirrhosis

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 8

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 36

State and territory hepatitis organisations 36

Other useful contacts 38

Contents© Hepatitis Australia 2014

Living with Cirrhosis published by Hepatitis Australia and funded by the Commonwealth Department of Health

Acknowledgements

We thank those individuals who contributed to this booklet by sharing their stories about the experience of living with hepatitis C We are also grateful to individual members of Hepatitis Australia’s Health Reference Group, Community Reference Group and National Resource Network 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

Further information

For further information about hepatitis C please visit the Hepatitis Australia Website www.hepatitisaustralia.com or call the National Infoline 1300 437 222

Feedback

If you would like to provide feedback about the information contained in this booklet please email admin@hepatitisaustralia.com

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his booklet is for people who have recently been diagnosed with cirrhosis as a result of chronic (long-

term) 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 achieve the best possible

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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”

Is this booklet

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About the liverThe 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

and cirrhosis

A 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

The liver

Inferior vena cava Hepatic artery

Gall bladder Portal vein

Right lobe Left lobe

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 long-term 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.”

Compensated and decompensated cirrhosisIn 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 The ability of the liver to keep working even when substantial liver damage has occurred means the majority of people with compensated cirrhosis will continue to feel well for quite some years

In decompensated cirrhosis, the severity of the scarring means the liver can no longer carry out its many functions adequately

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

Healthy liver

Cirrhotic liver

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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

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.”

Symptoms of cirrhosisYou 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

happen to me?

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What might

affected by liver disease These include:

• Low energy levels

• Poor appetite which may be accompanied by nausea and vomiting

• Loss of muscle mass and strength, particularly in the upper body

• Frequent large fluctuations in weight depending on fluid accumulation

• 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)

• Fluid accumulation around the abdomen and/or ankles (ascites and/or oedema)

• 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 become puffed up with blood making them fragile (varices) and causing them to bleed easily

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 immediately 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

“…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

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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 Your health care team will talk to you about ways to manage ascites and oedema Having a high protein, no added salt diet will assist you in getting the fluid build-up under control Your team may also recommend diuretics (water tablets) and fluid intake restriction as needed 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 If these symptoms appear it is important to seek medical attention immediately, so that the cause of the encephalopathy can be identified and treated

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 Research has shown that a high protein diet will assist in improving nutritional status in cirrhosis

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and help to manage encephalopathy In addition to a high protein diet across the day, have a high protein snack before bed and another snack if you wake up during the night as this will assist you in getting to sleep and have a better quality sleep each night Often in cirrhosis you wake because your body needs fuel, so having a high protein snack helps meet that need The dietitian on your health care team can provide expert, individualised nutrition assessment and advice to assist you in managing your symptoms and improving your nutritional status 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

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 healthThe 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 dietitian Where possible, your GP will also be involved in monitoring and managing your cirrhosis in

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maintain my health and well-being?

How do I

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consultation with the specialist and hepatology nurse

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

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.”

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 can 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

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)

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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

Alcohol, tobacco and illicit drugs Medications and complementary medicinesPrior 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 appetiteMalnutrition 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 Muscle wasting occurs in people with cirrhosis, but it is not always obvious because fluid accumulation or increased fat stores can hide shrinking muscles Lack of strength and lack of energy can be important

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signals that you need to make changes to your nutritional intake Due to fluid accumulation in ascites and oedema and other changes to your body if you have cirrhosis, your weight on the scales is not an accurate indicator of your nutritional status Research has shown that a high protein diet with small frequent meals and snacks that are high in protein may assist in maintaining or improving your muscle mass The timing of meals and snacks is very important for maintaining muscle mass and managing fatigue, so try to eat or drink something high in protein every 3-4 hours when awake and do not fast for more than 8 hours overnight Having more high protein foods and drinks across the day is a good first step You don’t need to eat big meals and snacks to make a difference just a little something with protein every few hours can be of benefit Depending on your symptoms, you may also benefit from other changes to your diet such as not adding salt See the dietitian on your health care team for an individualised nutrition assessment and advice to assist you in managing your symptoms and improving your nutritional status

What are high protein foods and drinks?

They are: meat, poultry, fish, eggs, nuts, seeds, legumes (dried beans, lentils, chick peas etc), soy products (tofu, soy milk etc) and dairy products (milk, cheese, yoghurt, sour cream, custard etc)

Tips on adding more protein to your meals and snacks:

• Grate cheese or sprinkle chopped nuts or seeds over your meal

• Add cream, sour cream, milk or yoghurt to curries, casseroles and pasta sauces

• Add lentils, beans or tofu to casseroles and pasta sauces

• Add meat, fish or poultry to pasta sauces

• A tub of yogurt or a handful of nuts is a quick high protein snack

• Peanut butter, cheese or canned fish on a biscuit or toast

• Add hard boiled eggs to your salad or sandwich or have one as a snack

• An omelette or an egg on toast is a quick high protein meal

• Custard,yoghurt and some cheeses go very well with fruit

• Add lots of milk or yoghurt to your cereal along with chopped nuts or seeds

• Cook porridge with milk rather than water

• Make instant coffee and hot chocolate with milk

• Drink milk, milk shakes or smoothies rather than juice or soft drink

• Fortify 1 cup of fresh milk with 3 tablespoons of dried milk powder to make high protein milk and use across the day

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Managing fatigueAdequate 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 A bedtime snack and a snack or meal on waking that is high in protein and has some carbohydrate will assist in maintaining your blood sugar levels if you have cirrhosis Bedtime snacks will help you to get to sleep and have a better quality sleep each night See the dietitian on your health care team for suggestions on the best bedtime snack for you, but an excellent start would be a mug of warm milk with honey or hot chocolate made with milk 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, 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

The timing of meals and snacks is very important for managing fatigue and maintaining your muscle Don’t skip meals and try to eat something high in protein every 3-4 hours when awake and do not fast for more than 8 hours overnight

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

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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

Dental and oral healthBooking 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

treatment optionsanti-viral

ntil recently, it was thought that cirrhosis was irreversible because the underlying cause of liver disease

is usually a long-term or difficult to cure condition 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

Hepatitis B treatment optionsIf you have hepatitis B and cirrhosis, you should be treated with anti-viral tablets to reduce the chance of developing complications of liver disease The tablets need to be taken long-term to suppress the hepatitis  B virus and stop it from multiplying It is important to take the tablets as directed by your specialist as failure to do so can cause serious problems from worsening

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Hepatitis

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of liver disease If the amount of virus circulating in the bloodstream is kept at very low levels, normal liver function is maintained, and the chance of complications from cirrhosis are much reduced Even if you have hepatitis B-related liver failure, your liver function can improve significantly once treatment is started

Hepatitis C treatment optionsHepatitis C has for many years been treated with interferon and ribavirin: these medicines have significant side-effects Most people are able to achieve a cure using these medicines, however, the chance of a cure is lower for people with compensated cirrhosis than it is for people with earlier stages of liver disease Unfortunately, treatment with pegylated interferon and ribavirin is not currently possible for people with decompensated cirrhosis due to the side-effects of treatment

However, new and better tolerated medicines are becoming available which can be given over a shorter period of time and achieve higher cure rates Initially, they will be combined with pegylated interferon, but eventually interferon-free combinations will become available

The new treatment options will offer improved cure rates for people with cirrhosis Your specialist can provide the most up-to-date information on hepatitis   C treatments available in Australia which are suitable for your specific needs

For people with cirrhosis, the possibility of achieving a cure following hepatitis C treatment also brings with it the potential to reduce liver scarring, or at least stop it from progressing

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• You cannot live without a liver, however, it can still function, even if a lot of it is damaged or removed The liver has many important jobs and is often described as the body’s ‘factory’ as it carries out so many vital functions

• Cirrhosis is the stage of liver disease where severe scarring has replaced much of the liver tissue This severe scarring, depending on how extensive it is, can seriously affect the functioning of the liver

• 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

• 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 as urgent medical attention may be needed

• One of the most important things you can do to help yourself stay well in the long term is to make sure you regularly visit your GP and liver specialist to monitor your liver health This is a very important part of looking after yourself for the long term when you have cirrhosis

• 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

• 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

• You may benefit from a high protein diet which includes high protein snacks across the day to assist in maintaining muscle strength, managing fluid retention, poor appetite and improving energy levels Seek dietary advice from the dietitian on your health care team

• Adequate rest is very important for people with cirrhosis, trying to do too much each day can lead to total exhaustion

• Finding a little bit of time to stay connected with people you are close to is an important aspect of maintaining your well-being

• It 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

Summary

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Ascites. A condition when fluid from the surface of the liver and intestine leaks into the abdominal cavity as a result of portal hypertension

Cirrhosis. The stage of liver disease where severe scarring has replaced much of the liver tissue This severe scarring, depending on how extensive it is, can  seriously affect the functioning of the liver

Compensated cirrhosis. The liver becomes extensively scarred, however it is still able to work reasonably well as there are still enough healthy blood cells and sufficient blood flow

Decompensated cirrhosis. The liver is so severely scarred it is unable to function as it should

Endoscopy. A medical procedure which involves a thin tube being inserted into the mouth and down your food pipe to look inside the body without performing major surgery

Gynaecomastia. Enlarged breasts in men

Hepatocellular carcinoma. Primary liver cancer

Hepatic encephalopathy. This occurs when waste products such as ammonia and other toxins build up in the bloodstream causing problems such as sleep disturbance, mental confusion, and bizarre behaviour

Jaundice. Yellowing of the skin, whites of the eyes and skin due to a build-up of bilirubin in the blood

Lactulose. A sweet syrupy medicine to enable 1-2 soft bowel motions each day to assist with the removal of toxins from the body to prevent a build-up of toxins which could lead to hepatic encephalopathy

Oedema. Accumulation of excess fluid in the body tissues

Palmar erythema. Red blotches on the palms

Pegylated interferon. Medication used to treat viral hepatitis

Portal hypertension. A rise in pressure in the vein that delivers blood to the liver

Portal vein. The vein that delivers blood to the liver

Ribavirin. Medication used to treat viral hepatitis

Spider naevi. Visible small spider-like blood vessels on the chest, back or arms

Varices. Abnormally dilated veins

Glossary

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Cameron, P, & Wright, M 2011, Cirrhosis of the liver, The British Liver Trust, London, viewed 17 June 2012, http://www britishlivertrust org uk/home/order-publications/download-publications aspx

Digestive Health Foundation n d , GI Health and Nutrition Centre for consumers and patients, Gastroenterological Society of Australia, viewed 17 June 2012, http://www gesa org au/consumer asp?cid=1&id=1

Dore, G, Lloyd, A & Temple-Smith, M (eds ) 2009, Hepatitis C: An Expanding Perspective, IP Communications, Melbourne

Gastroenterological Society of Australia (Gesa) resource High protein high energy diet for advanced liver disease 2014, http://www gesa org au/files/editor_upload/File/Consumer%20Brochures/2014/High%20Protein%20High%20Energy pdf

hatever situation you find yourself in or difficulty you are facing, don’t feel you are alone The contacts list

below will help you find the information and support you are looking for

“People often need support at the time of diagnosis. Good support and information at this time will definitely help people to cope with their situation. Often the impulse at such a crisis time is to sink into depression.”

and supportInformation

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Bibliography

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Hepatitis Australia Hepatitis Australia is the national peak body for our members, the state and territory hepatitis organisations We can connect you to experts in the state and territory hepatitis organisations via our Telephone Information Line In addition, our website provides general information about many aspects of viral hepatitis T 1300 437 222 (1300 HEP ABC)

– National Telephone Information LineE: admin@hepatitisaustralia comW: www hepatitisaustralia com

State and Territory Hepatitis OrganisationsThe eight state and territory member organisations of Hepatitis Australia can help you with further information and support at the local level If you would like more copies of this booklet, please contact your state or territory hepatitis organisation

Hepatitis ACTT: 02 6230 6344E: info@hepatitisact com auW: www hepatitisact com au

Hepatitis NSWT: 02 9332 1853E: info@hep org auW: www hep org au

Hepatitis SAT: 08 8362 8443E: admin@hepccouncilsa asn auW: www hepccouncilsa asn au

Hepatitis VictoriaT: 03 9380 4644E: info@hepcvic org auW: www hepcvic org au

Hepatitis QueenslandT: 07 3846 0020E: reception@hepqld asn auW: www hepqld asn au

Hepatitis WA T: 08 9227 9800E: info@hepatitiswa com auW: www hepatitiswa com au

Northern Territory AIDS and Hepatitis CouncilT: 08 8944 7777E: info@ntahc org auW: www ntahc org au

Tasmanian Council on AIDS, Hepatitis and Related DiseasesT: 03 6234 1242E: mail@tascahrd org auW: www tascahrd org au

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Other Useful Contacts

Hepatitis C Australasia A confidential online community for people with hepatitis C W: www hepcaustralasia org

Australian Injecting and Illicit Drug Users League (AIVL)Peak national community organisation representing state and territory peer-based drug user groups:T: 02 6279 1600W: www aivl org au

Haemophilia Foundation AustraliaPeak national organisation representing state and territory haemophilia foundations:T: 03 9885 7800E: hfaust@haemophilia org au W: www haemophilia org au

Telephone Interpreter Service (TIS) NationalTIS National can provide telephone and onsite interpreters for non-English speakers T: 131 450

The Digestive Health FoundationThe educational arm of the Gastroenterological Society of AustraliaE: dhf@gesa org auW: www gesa org au

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Notes

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Infoline: 1300 437 222