Living with advanced liver disease

Living with Advanced Liver Disease

§ Helpful Hints

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Some services may not be available due to COVID-19 restrictions and/or other changes.

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Cover image © Sebastian Kaulitzki/123RF.COM

Introduction This booklet was put together following conversations with people who have lived experience of advanced liver disease, and with the health workers who help them. It does not replace information and resources provided to you by your healthcare professionals.

We hope to make your journey more manageable through offering practical tips on coping with some day to day difficulties of life with advanced liver disease.

If you have been diagnosed with ALD we encourage you to read this book with your partner, carer or health provider.

More information and support Hepatitis SA offers free print resources as well as confidential, non-judgemental support over the telephone. Call 1300 437 222.

More detailed information about cirrhosis and living with advanced liver disease can be found in the following: • The Australian Government has information on livercirrhosis at the Health Direct site: visit healthdirect.gov.au/cirrhosis-of-the-liver.

• The British Liver Trust website’s Living with Liver Disease (bit.ly/38SUM6g) and Diet and Liver Disease (bit.ly/3xG2WJQ) pages.

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About this booklet You may have been told that you have advanced liver disease. This means your liver has sustained significant damage and is struggling to perform its usual functions. Because of this, you may experience difficult and uncomfortable symptoms that can affect many aspects of your daily life.

Topics covered in this booklet:

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Eating difficulties

p5

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Finding low/no salt food

p6

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Managing itchy skin

p10

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Confusion and memory loss

p12

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Dealing with emotions

p15

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Transport

p16

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Ambulance services

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The list is by no means comprehensive. It was compiled from issues nominated by health workers and people with advanced liver disease or their carers. For more information, please call the Hepatitis SA Helpline on 1300 437 222.

NOTE: In some parts of this booklet, products have been identified by brand names. These occur where products were specifically recommended or suggested by interviewees. We have included them for your convenience and their inclusion should not be taken as advertisement for, or endorsement of, these brands. Costs, where included, are valid at time of printing.

Eating and nutrition The difficulty: You may experience difficulty eating and swallowing, caused by symptoms including a dry mouth, nausea, a poor appetite, tiredness and changes to your taste buds.

Resulting problem: Malnutrition is common amongst people with advanced liver disease, and can lead to a worsening of symptoms and poorer health outcomes. Whilst it can be difficult getting enough nourishment from your diet, a good nutritional intake is very important during times of ill health.

Suggested solution: Whilst a healthy, nutritious diet is still important, Sustagen Hospital Formula may be useful for people having difficulty eating, providing a source of vitamins, minerals, energy and protein.

Sustagen Hospital Formula is a nutritional supplement that comes in powder form. There are three different flavours; chocolate and vanilla, which can be added to skim milk and consumed like a milkshake, and a plain flavour (called ‘neutral’ flavour) that can

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also be added to skim milk, or mixed into other meals during cooking. It is always a good idea to get advice from your doctor or nutritionist regarding your diet in relation to your health condition.

Other formulas may also be useful. Check with your doctor.

Where: Sustagen Hospital Formula can be purchased at many major pharmacies.

Cost: Approximately $27-$30 per can (15 serves).

Finding low/no-salt foods The difficulty: As salt makes your body retain water, causing increased fluid build up and swelling in the abdomen and/or feet, your doctor may encourage you to eat a low to no salt diet. It can be very difficult to identify low/no salt foods in the supermarket, especially when you are feeling unwell and experiencing symptoms including brain fog, tiredness and nausea.

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Suggested aids: 1. Foodswitch smartphone app If you have a smartphone, you may find it useful to download a free phone application called Foodswitch.

This phone app allows you to scan the barcode of many food items and provides you with a simple rundown of the levels of fat, saturated fat, sugars, energy, and

salt in the product. It will mark each category using a simple traffic light system: red, amber and green. A red marking suggests the product is not very healthy, and green marking suggests it is a healthier option.

For most products, if the item you scanned is not the healthiest choice, the app will suggest a similar but healthier product. This encourages you to make a food switch. You can select the ‘salt-switch’ option, which allows you to focus on salt. It will then suggest similar products containing less salt.

Cost: Free For more information, please visit bit.ly/food-switch

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2. Online salt information If you don’t have a smartphone, check out the low-salt food guide offered by Salt Matters, which is available at bit.ly/3L55c0K. The Salt Matters website, saltmatters. org, has a lot more informations. Similar information can also be found at findlowsaltfood.info.

3. Hepatitis SA library The Hepatitis SA library has printed guides and publications on low-salt foods, as well as numerous other resources. Visit the library online at hepatitissa. asn.au/library, or call 1300 437 222 to make enquiries.

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4. Reading food labels Some manufacturers make their products appear healthier than they actually are.

For more information on reading food labels, and other dietary information, see Hepatitis SA’s publication Eat Well for your Liver. Call us on 1300 437 222 for your free copy, or you can view the entire book online at issuu.com/hepccsa/docs/eatwell_complete_low.

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Itchy skin Itchy skin (also known as pruritus) is a common and distressing symptom amongst people with advanced liver disease. A build-up of a substance called bilirubin in the body is thought to cause this symptom. When the liver breaks down old red blood cells, bilirubin is produced. As the liver struggles to perform its filtering function, the bilirubin builds up and causes itchy skin.

It is also the cause yellowing (jaundice) of skin and eyes.

Suggested strategies: • Avoid scratching the itch. Instead rub and apply pressure or ice to the area.

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• Do not use normal soaps or shampoos. Try soap and shampoo substitutes like Cetaphil, DermaVeen, Aveeno or QV. • Use an oat-based cream to moisturise skin, e.g.

Aveeno Daily Moisturising or DermaVeen lotion.

Apply creams on skin directly after showering. Let the moisturiser dry before gently patting yourself down with a towel.

• Protect your skin from the sun.

• Do not use perfumed products on your skin.

• Wear loose-fitting natural fabrics.

• Avoid very hot showers.

• Discuss relaxation techniques with MOSAIC counsellors (see p15).

Cost: • Cetaphil Gentle Skin Cleanser: Approximately $17 per litre • Aveenno Daily Moisturising Lotion: Approximately $14 per 354ml • DermaVeen Moisturising Lotion: Approximately $18 per litre

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Where: Cleaners and moisturisers for sensitive skin can be purchased at pharmacies and supermarkets.

Confusion and Memory Loss The difficulty: Due to a build-up of toxins, your memory and cognitive functions may be affected as your liver disease progresses. This is known as hepatic encephalopathy.

As a result you may have difficulty recalling important medical instructions or you may experience confusion finding your way to and from appointments.

Suggested strategies: 12

• Lactulose is a recommended treatment for encephalopathy. It reduces the amount of toxins that can be absorbed from the large intestine. The correct dose of lactulose varies from person to person and may change from day to day. Aim for 3 to 4 bowel movements per day. The change in bowel function can be bothersome, but it is necessary to clear toxins from your blood. You may take a

dose every hour until the confusion decreases. If you or someone around you notices symptoms of encephalopathy such as drowsiness, confusion or slow responses, take another dose.Speak to your doctor for more information.

• If you can, arrange to have a trusted family member or friend to stay with you and/or attend medical appointments with you. Tell your support person about the possible effects of your condition. This is important as you may be unable to accurately recall instructions. Your support person needs to be someone you know and trust. This will make it easier for you to accept his/her interpretation of instructions when it contradicts what you remember.

• If you are on your own and have no access to a family member or friend who can offer you close support, consider the following: 1. Have a whiteboard or corkboard to record important phone numbers, messages, tasks, medication reminders and medical appointments.

2. Keep a diary or notebook in your bag for recording important dates like medical appointments.

3. Set an alarm on your mobile phone for medicine reminders.

4. Display emergency telephone numbers on a board near the phone.

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5. Always keep commonly used items such as your keys, mobile phone, wallet, glasses and money in the same place, like a bowl or a basket on the table. Make a note of where that place is in case you forget, and put the note somewhere easily visible like the notice board.

6. Change or modify your locks to operate with one master key. Give a duplicate to a trusted family member or neighbour.

7. Consider signing up for a personal medical alarm service in case you need help in an emergency situation.

8. Consider joining Medic Alert so that your medical information can be accessed by emergency attendants should you be unable to tell them about your condition. Note that there is a fee for using MedicAlert. Visit medicalert.org.au.

9. Consider registering for eHealth so that your health records are more readily available to health professionals to whom you choose to give access.

Visit digitalhealth.gov.au for more information.

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Emotions The difficulty: Living with advanced liver disease can be emotionally difficult. You may be dealing with loss of independence, uncomfortable physical symptoms and possibly an uncertain future in terms of treatment options.

Suggested service: MOSAIC is a confidential and free service specialising in counselling, case management, support and advocacy for people living with viral hepatitis and/or HIV. MOSAIC counsellors can help you clarify issues and provide you with strategies for dealing with difficult emotions.

MOSAIC can also provide information and referrals to other services that may help with your specific needs.

Cost: Free Contact: (08) 8223 4566

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Transport The difficulty: The physical and cognitive effects of advanced liver disease can make it difficult or unsafe for you to drive or catch public transport. Your ability to attend medical appointments may be hindered because of ascites, oedema, confusion, tiredness, and a need to regularly use the toilet when taking lactulose.

Suggested solutions: 1. Red Cross Transport Service

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The Red Cross (South Australian Branch) has a transport service that can take people to and from medical appointments when they have limited transport options. The service is much cheaper than those of a taxi service, though the exact cost can vary.

To access this service, you must register over the telephone, pay an annual registration fee, and make a small payment on the day of travel.

You may also bring a support person to your appointment. Your support person will not have to make any payments on the day of travel, but will have to pay an annual registration fee.

The service requires as much notice of your medical appointment as possible. Ideally you should book the service 1-2 weeks in advance. The service operates Monday to Friday, 8am–5pm.

Locations: • Adelaide metropolitan area • South East Country and Eyre Peninsula regions (regional offices located in Mount Gambier and Port Lincoln) Cost: For current annual registration fees for you and your rupport person, as well as the small fee to be paid on the day of travel, contact the service below.

Contact Red Cross Transport Service to register Phone (08) 8100 4500 or email saclientservices@redcross.org.au.

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2. Transport options for The Hills and rural areas: Community Passenger Transport Network There are a number of transport services in rural areas for people who need to travel to medical appointments in Adelaide.

Services differ depending on days and times. This means your medical appointments must be made on certain days and between certain times if you want to use these services. In some areas, a referral from your doctor may be necessary to use the service.

Bring a carer if you are experiencing high levels of confusion, or require frequent attention. Please give as much notice of your medical appointment as possible to make sure you and/or your carer are able to make a booking.

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For more information specific to your area, contact your local council and ask about the Community Passenger Transport Network. Medical appointments get priority bookings, so please inform them that you will be attending a medical appointment.

Cost: Prices often range from $20-$30 for a return trip, and carers generally travel for free. However, this may vary among services.

Ambulance services The difficulty: There may be times when you need immediate professional attention and are unable to drive yourself, or when you require specialised transport to access medical care. The cost of an ambulance in an emergency situation can be more than $800. This cost can be a barrier to accessing the care you need.

It is important that you and your family or carer feel comfortable to call the ambulance in case of an emergency or in situations where you need an ambulance.

Suggested solution: SAAS Ambulance Cover South Australian Ambulance Service provides affordable ambulance insurance cover. This gives you access to ambulance services for one annual fee, rather than the fees charged to non-members each time they use the service.

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Cost: Ambulance insurance cover (per year; higher costs if interstate cover needed also) • Single person: $90 • Family: $179 • Pensioner single: $54.50 • Pensioner family: $108 For more information, visit saambulance.sa.gov.au/ membership/ambulance-cover or else call 8274 0432 or 1300 136 272.

Private ambulance cover If you already have private health insurance, you can also consider accessing ambulance cover provided by your health insurer. However, look out for details such as gaps, non-emergency transfers and transfers between public hospitals.

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Glossary Ascites: A build-up of fluid in the abdominal cavity (belly area).

Bile: A fluid, made by the liver, that helps digest food containing fat and cholesterol Bilirubin: An orange-yellow coloured substance found in bile that is made when the liver breaks down old red blood cells. A damaged liver struggles to filter bilirubin out of the body.

Cognitive function: an intellectual process by which one becomes aware of, perceives, or comprehends ideas. It involves all aspects of perception, thinking, reasoning, and remembering.

Hepatic encephalopathy: A reversible condition from chronic liver disease that affects brain function causing confusion, drowsiness and, in some cases, coma. This is because a damaged liver is unable to break down all the toxins in the body. Eventually toxins build-up and pass through the brain causing these side-effects.

Jaundice: Yellowing of the skin or whites of the eyes as a result of a build-up of bilirubin.

Lactulose: A drug given to people experiencing hepatic encephalopathy, a condition resulting from a build-up of toxins in the body. Toxins are often absorbed into the body from the gut. Lactulose adds acid to the gut, reducing this absorption process. One of the side

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effects of Lactulose is frequent, loose stools. This is caused by water being drawn into the gut as a result of the build-up of toxins that had been prevented from passing into the body.

Malnutrition: Lack of nutrition caused by not eating enough, or not eating enough healthy foods.

Nausea: Feeling like you may vomit.

Oedema: Swelling of feet or ankles from a build-up of fluid in body tissue.

Pruritus: Itchy skin.

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Free hepatitis A, B and C information, confidential and non-judgemental support, referrals and printed resources.

We can help. Talk to us.

Call or web chat 9am–5pm, Mon–Fri

Information Support

1800 437 222 hepsa.asn.au

Live Chat: Visit our website and click on the CHAT button at the bottom right corner of your screen to chat during office hours, or the Email Us button to message us outside of office hours. A support worker will reply to your message when they come on shift.

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Hepatitis SA

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Ph 1300 437 222 or (08) 8362 8443 3 Hackney Rd Hackney SA 5069 PO Box 782 Kent Town SA 5071 www.hepsa.asn.au Developed and published on Kaurna Country

SA Health has contributed funds towards this Program.

Last update: April 2022