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Liver cirrhosis a toolkit for patients

BRING THIS BOOK TO EVERY APPOINTMENT 170530_res_Cirrhosis_Booklet_v6.indd 1

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This booklet does not aim to replace the advice provided by a doctor or other health care worker. The booklet is designed for a NSW readership. Generally speaking, it should be read from front to back, as explanations of medical terms are usually provided only when the term first appears in the booklet. If any information in this booklet needs further explanation or you want more detailed information, please contact your Liver Clinic Team or talk to your doctor. The content of this booklet is based on information available at the time of publication. The booklet has been produced with the assistance of staff from Royal Prince Alfred and St George Hospitals. Thanks to Carlie Stephens, St George Hospital, and Sinead Sheils, RPAH, for their initial drafting of this booklet. We give special thanks to Assoc Prof Simone Strasser, RPAH, for her final clinical review of the booklet content. First edition – JANUARY 2018 ISBN: 0 9585318 4 9 Hepatitis NSW is funded by the NSW Ministry of Health. Edited by Joanne Carson. Layout/design by Rhea Shortus. This work is copyrighted by Hepatitis NSW (see back cover). It may be reproduced in whole or in part for study training purposes subject to the inclusion of an acknowledgment of the source and no commercial usage or sale of content or imagery. Hepatitis NSW would like to acknowledge and show respect for the Gadigal people as the traditional custodians of the land on which this booklet is published. We extend that acknowledgement and respect to all Aboriginal nations in NSW and across Australia.

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CONTENTS Introduction

1

Your medications are important

25

What does your liver do?

3

Managing nutrition

29

What is liver cirrhosis?

5

Liver cancer screening

33

Understanding why liver cirrhosis is a problem

7

Your appointments

34

Treatments

9

My appointment diary

35

Levels of cirrhosis

11

My weight tracker

38

Symptoms of decompensated cirrhosis

13

My medication list

39

Getting urgent medical help

17

Managing symptoms of decompensated cirrhosis

Notes

41

19

Contacts

44

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Introduction WELCOME TO THE LIVER CLINIC You have been given this booklet because you have liver cirrhosis. This might sound scary, but the Liver Clinic Team will be here to help you. We will work with you to treat and manage your cirrhosis. Together we will find the best treatment for you. SELF-CARE We will help you understand what is happening to your liver so that you can make the best decisions for your treatment and your health. 1 170530_res_Cirrhosis_Booklet_v6.indd 1

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We will teach you about your symptoms, your medications, your diet and your general health. We will explain why coming to all your appointments is important. We are here to help you manage your health. You can bring a family member, friend or carer with you to the Liver Clinic. This helps give you support. Your family, friend or carer can: Help you remember what your doctor or nurse says. Ask questions you might forget to. Be someone you can talk to. Remember, if you or your family member, friend or carer have any questions about your health, contact us at the Liver Clinic. We will be happy to help you. 2 170530_res_Cirrhosis_Booklet_v6.indd 2

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What does your liver do? Your liver is important, you can’t live without it. Your liver does lots of different jobs for your body (see below).

It makes important proteins.

It helps to make blood clot whenever you cut yourself and bleed.

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ts of

It makes bile for digesting food in the stomach.

It filters and removes toxins from the blood.

It stores and distributes vitamins, minerals, fats and sugars for use in the body. It organises the energy that keeps our body alive.

It helps prevent infections. 4

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What is liver cirrhosis? Liver cirrhosis happens over time. It begins when healthy liver cells LIVER INFLAMMATION

HEALTHY LIVER

LIVER CELLS START TO BECOME DAMAGED

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lls

are damaged and become inflamed (swollen). Cells that are very inflamed die and are replaced by scar tissue (also called fibrosis). When scar tissue builds up too much it is called cirrhosis. LIVER FIBROSIS

LIVER CIRRHOSIS

LIVER BEGINS TO SCAR

LIVER BECOMES VERY SCARRED 6

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Understanding why liver cirrhosis is a problem Cirrhosis of the liver can cause problems in many areas of your body. The first problem is that cirrhosis lowers the number of healthy liver cells. Without enough healthy liver cells, your liver can’t do all of the important jobs it needs to. The second problem is that liver cirrhosis will shrink and harden your liver which limits blood flow. Without enough blood flow, the liver won’t work properly. 7 170530_res_Cirrhosis_Booklet_v6.indd 7

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A healthy liver should filter out toxins (bad stuff like poison and waste). If your liver isn’t working properly, the toxins can get into your blood and cause problems. The third problem is that reduced blood flow through your liver can create a build-up of pressure. The pressure builds up, like when a garden hose is kinked. This is called portal hypertension. The blood gets pushed back into your spleen which can cause other problems. The pressure build-up can also cause swelling, distended (enlarged) veins, and internal bleeding in other areas of your body.

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Treatments The most common reasons you might have liver inflammation and cirrhosis are: Hepatitis C Heavy alcohol use

Hepatitis B Fat build-up in the liver

Other less common causes are autoimmune disorders, genetic disorders, certain medications, and some dangerous chemicals. Your Liver Clinic will work with you to find out what has caused your cirrhosis. They will then discuss how you can treat that issue best. Curing or treating the source of your cirrhosis will help make you feel better. 9 170530_res_Cirrhosis_Booklet_v6.indd 9

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Hepatitis C The new treatments for hepatitis C cure up to 95% of people. They have very few side-effects and only take around 12 weeks. Talk to your Liver Clinic about getting cured. Hepatitis B It is important that your doctor or Liver Clinic monitor your hepatitis B. They might talk to you about going on treatment. Fat build-up on the liver The Liver Clinic will discuss your diet, weight loss and what physical activity might work for you. Drinking alcohol Talk to the Liver Clinic if you need help and support to stop drinking alcohol (regardless of the cause of cirrhosis). 10 170530_res_Cirrhosis_Booklet_v6.indd 10

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Levels of cirrhosis There are two stages of liver cirrhosis: compensated and decompensated. Compensated cirrhosis is the early stage of liver cirrhosis. It has only mild or no symptoms. At this point some of your liver still works well enough to compensate (make up) for the parts of the liver that have scarring. If liver damage gets worse, you will get the next stage of liver damage, called decompensated cirrhosis.

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Elvin | flickr

Decompensated cirrhosis is advanced liver cirrhosis and is dangerous. At this point your liver can’t carry out the important jobs it needs to do. In other words, your liver is starting to fail. By now you may be feeling tired, have poor appetite and be losing weight.

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Symptoms of decompensated cirrhosis It is important to understand the four symptoms of decompensated cirrhosis. This booklet and your Liver Clinic Team will teach you to identify important symptoms early so they can be treated quickly. 1. JAUNDICE (jawn-dis) Jaundice is yellowing of the eyes. It happens when the liver can’t filter your blood normally. If you get jaundiced suddenly, or your jaundice worsens, your liver function could be deteriorating (getting worse) or you may have an infection. 13 170530_res_Cirrhosis_Booklet_v6.indd 13

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Contact your doctor or specialist immediately and make an appointment to have it checked out. 2. BLEEDING VARICES (vara-sees) Bleeding varices is bleeding that happens in your oesophagus (food pipe) or stomach. A build-up of pressure from your liver makes the blood vessels swell and burst. Bleeding varices is very serious and may be life threatening. The symptoms of bleeding varices are vomiting blood or having black, tarry, sticky stools (poo). If you have either of these symptoms you need URGENT MEDICAL HELP.

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3. ASCITES (uh-sigh-teez) Ascites is a build-up of fluid in your abdomen (stomach area). It is due to high pressure in the liver. Your abdomen will become very large. It is uncomfortable to eat (because you will always feel full) and breathing may become hard, especially when you are lying down. Some patients who have ascites might have malnutrition (when your body isn’t getting all the nutrients it needs). The ascites fluid can become infected and this is very serious. If you have ascites and have symptoms of sudden stomach pain and fever you need URGENT MEDICAL HELP. 4. ENCEPHALOPATHY (en-cef-a-lop-a-thy) Encephalopathy is due to a build-up of toxins in your brain. 15 170530_res_Cirrhosis_Booklet_v6.indd 15

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n

When the liver can’t filter toxins, the toxins stay in your blood and are carried to the brain. Symptoms of early encephalopathy are changes in mood, concentration, memory and sleeping patterns, as well as flapping hands. You may also have problems with handwriting, doing maths and crankiness. Talk to us if you have these symptoms and contact the Liver Clinic immediately. Symptoms of later encephalopathy are confusion, not acting like yourself, and being very sleepy for no reason. If it is severe it can make you deeply unconscious. This is very serious. If you, or somebody close to you, notice that you have symptoms of later encephalopathy you need to call for URGENT MEDICAL HELP.

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Getting urgent medical help

DON’T DRIVE YOURSELF! Symptoms of decompensated cirrhosis, particularly encephalopathy, will affect your ability to drive safely.

CheaTeing | flickr

DON’T WAIT & DON’T TAKE THE CHANCE! If something is wrong, CALL FOR AN AMBULANCE BY PHONING 000 or go to your NEAREST EMERGENCY DEPARTMENT right away.

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“The greatest part of my job is helping patients and their families to understand cirrhosis of the liver. Disease-focused education is very powerful and allows patients to start taking control over their health.� Carlie Stephens, Liver Clinic Team

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Managing symptoms of decompensated cirrhosis 1. JAUNDICE PREVENTION: Jaundice is what happens because of your liver damage. Your Liver Clinic Team will help your jaundice by treating the underlying liver problem. MONITORING: The Liver Clinic Team will examine you and monitor your blood for the causes of jaundice. YOUR ROLE: Take the medications prescribed to you every day and follow any diet advice. Remember to keep an eye on your

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jaundice (if it quickly develops or gets worse). If this happens, make an appointment to see your doctor immediately. 2. BLEEDING VARICES TREATMENT: You can lower the risk of bleeding varices by taking medications called beta blockers or a procedure called banding of the varices. MONITORING: The Liver Clinic Team may check this by doing an upper endoscopy (camera test) every few years. It is important not to miss these tests. YOUR ROLE: Take the medications prescribed to you every day. Watch out for vomiting blood or tarry stools (poo). If this happens call an ambulance or go to your local emergency department. 20 170530_res_Cirrhosis_Booklet_v6.indd 20

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3. ASCITES TREATMENT: This can be treated by having less salt in your diet. Also you can take medications called diuretics (fluid tablets) that help to reduce the fluid build-up in your stomach area. The fluid may also be drained by a doctor. A liver dietician may also suggest adding more protein and energy to your diet to avoid malnutrition. MONITORING: The Liver Clinic Team will monitor kidney function, salt levels in your blood, bacterial infections, and size of the ascites.

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YOUR ROLE: Follow any diet advice and take the medications prescribed to you every day. Make sure you have all the blood tests your doctor or nurse suggests. Remember to watch out for symptoms like stomach pains and fever. If this happens, go to your local emergency department. 4. ENCEPHALOPATHY TREATMENT: If you have encephalopathy it can be treated with one medication called lactulose, or one called rifaximin. These medicines absorb (soak up) the toxins that cause encephalopathy. MONITORING: The Liver Clinic Team will monitor you for signs and symptoms of encephalopathy. 22 170530_res_Cirrhosis_Booklet_v6.indd 22

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YOUR ROLE: Take the medications prescribed to you every day. Remember to watch out for symptoms of encephalopathy. Ask close friends or family members to keep an eye out as well. If you have symptoms or confusion or extreme sleepiness call an ambulance immediately. You should not drive if you have episodes of encephalopathy. You need to talk with your specialist and discuss when you can drive again.

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Steve Evans | flickr 24 170530_res_Cirrhosis_Booklet_v6.indd 24

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Your medications are important If you take your medications correctly, they will lower your symptoms and should make you feel better. You might be given a medication card. It will list the names and doses of your medicines, and when to take them. Bring this card with you to all your appointments in case any changes need to be made. If you are having problems with any side effects from your medication - talk to us. If you have questions about your dosages - talk to us. If you want to know if you can take over the counter medicines, vitamins or supplements with your medication - talk to us. We are here to help! 25 170530_res_Cirrhosis_Booklet_v6.indd 25

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Lactulose is a good example of medication that might give you side effects. It is a sticky liquid medication that is good at absorbing toxins and stopping the symptoms of encephalopathy. But it can increase the number of times you go to the toilet. The aim is to pass 2-3 soft bowel motions each day. You can talk to us and we will help you manage this. OTHER MEDICINES Paracetamol (Panadol) is the safest over the counter pain medicine for people with liver cirrhosis. Make sure you ask your doctor what is a safe dose for you (and don’t take more than that). You should not use NSAIDS (non-steroidal anti-inflammatory drugs) like ibuprofen (Nurofen) or diclofenac (Voltaren). 26 170530_res_Cirrhosis_Booklet_v6.indd 26

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Having liver cirrhosis will make you sensitive to narcotic drugs like codeine and to sedative drugs like diazepam (Valium). This means you need to take a lower dose of these medicines. Always check with us, or speak to your doctor or chemist before taking any new or different medicine.

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“Having access to all the information about my liver disease makes it much easier to handle. My liver nurse helps to keep me on track and explains what is wrong with my liver so that I can make changes to keep me healthy.�

Umbrella Shot | flickr

Alan, patient

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Managing nutrition Diet is very important for people with liver cirrhosis. If your liver isn’t working properly, it may not be able to get the energy you need from food. Your fat and muscle stores will be used up instead. You may have unhealthy weight loss, muscle loss and malnutrition. Changes to your diet can really help your nutrition and energy levels, and lessen liver cirrhosis symptoms. The Liver Clinic Team will give you a referral to a specialist liver dietitian. The dietitian will look at your diet and work with you to design your diet plan. They will answer any questions you might 29 170530_res_Cirrhosis_Booklet_v6.indd 29

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have about food and drink. Your diet might need to be adjusted along the way if your symptoms change. The dietitian will be there to help you. Dietitians also take measurements of height, weight and body mass index (and sometimes hand grip strength), so that we can monitor your progress. Parts of your diet we usually work on are: SALT: A low salt diet is important to lower fluid retention (when your body holds on to fluid) and symptoms like ascites and oedema (fluid build-up in the legs).

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This means not adding salt to meals and cooking. It also means eating fewer processed foods such as takeaway foods, condiments, and sauces. PROTEIN: A high protein diet is important to prevent malnutrition and muscle wasting. This means eating more meat, poultry, seafood, eggs, milk, yoghurt, cheese, nuts, lentils, beans and peas, and soy products. ALCOHOL: The risk of liver damage is higher if you drink alcohol. If you have liver cirrhosis, you should try not to drink any alcohol. If you find this difficult, please talk to a Liver Clinic Team member. They will help you manage alcohol so that you don’t put your liver at risk.

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Kerry, patient

Steve Evans | flickr

“The liver clinic is great. I see my nurse and also the doctors and dietician. They all help me to learn to look after my liver. My nurse also helps me to have my fluid drained every few weeks which stops me having to come in to the emergency department every time.�

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Having liver cirrhosis increases your risk of liver cancer. The Liver Clinic Team will organise special blood tests and ultrasounds for you every six-months. It is very important not to miss any of these because they can detect any cancer tumours while they are still small. Liver cancer can be treated if it is caught early.

Steve Evans | flickr

Liver cancer screening

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Your appointments

Steve Evans | flickr

Liver cirrhosis is serious. We will make regular appointments for you at the Liver Clinic. It is all about keeping you well. It is important you show up for every single appointment. If you can’t make it, let us know beforehand so that we can make another appointment for you. Before most of your appointments you will need to have blood tests. They will monitor how well your liver is functioning, and how well your medications are working. The Liver Clinic Team will plan where and when to have these blood tests taken with you. These tests will help us to make the best decisions about your treatment. Remember if you have any questions don’t hold back – you can ask us anything! 34 170530_res_Cirrhosis_Booklet_v6.indd 34

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MY APPOINTMENT DIARY DATE

TIME

APPOINTMENT TYPE

LOCATION

REFERRAL NEEDED

YES NO YES NO YES NO YES NO YES NO

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MY APPOINTMENT DIARY DATE

TIME

APPOINTMENT TYPE

LOCATION

REFERRAL NEEDED

YES NO YES NO YES NO YES NO YES NO

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MY APPOINTMENT DIARY DATE

TIME

APPOINTMENT TYPE

LOCATION

REFERRAL NEEDED

YES NO YES NO YES NO YES NO YES NO

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MY WEIGHT TRACKER DATE

WEIGHT

DATE

WEIGHT

DATE

WEIGHT

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MY MEDICATION LIST MEDICATION

HOW MANY mg (DOSE)

HOW OFTEN

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MY MEDICATION LIST MEDICATION

HOW MANY mg (DOSE)

HOW OFTEN

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Notes 41 170530_res_Cirrhosis_Booklet_v6.indd 41

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Notes 42 170530_res_Cirrhosis_Booklet_v6.indd 42

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Contacts Patient name: Clinic: Doctor: Contact number: Nurse: Contact number: Notes: 44 170530_res_Cirrhosis_Booklet_v6.indd 44

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Want to know more? Call our Hepatitis Infoline 1800 803 990 (free from a landline) Hepatitis Infoline 1800 803 990 www.hep.org.au PO Box 432 Darlinghurst, NSW 1300 info@hep.org.au

ABN 30 408 095 245 A non-profit health promotion charity funded by the NSW Ministry of Health. Accredited by the Quality Improvement Council of Australia (QIC). Donations of $2 and over tax deductible PRINTED JANUARY 2018

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Or go to www.hep.org.au for more free brochures

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