Advanced Liver Disease

Key points

• Anyone with cirrhosis or liver cancer can develop advanced liver disease
• If you have advanced liver disease, your liver doesn’t work anymore. You might develop serious health problems
• There are lots of things both you and your medical team can do to prevent your condition getting worse
• The most important things: make sure you get proper nutrition, stop drinking all alcohol, and do everything your doctors ask you to do

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What is advanced liver disease?

Sometimes liver damage becomes so advanced that the liver doesn’t work anymore. There are things you and your doctor can do to stop your condition getting worse.

Sometimes this condition is referred to as end-stage liver disease, chronic liver failure or decompensated cirrhosis. Decompensated cirrhosis is when someone with cirrhosis develops complications such as internal bleeding, a swollen belly from build-up of fluid, or confusion or sleepiness.

Serious problems that can happen in advanced liver disease include:

• Portal hypertension: High pressure in the portal vein. Sometimes it can cause internal bleeding
• Ascites: Swollen belly due to build-up of fluid
• Peritonitis: The fluid in the belly can get infected. Symptoms might be fever, belly pain and low blood pressure
• Varices: When blood can’t flow through the liver properly it finds a way through other blood vessels. These can burst and cause bleeding most commonly from the lower food pipe (oesophagus) or stomach
• Hepatic encephalopathy: A brain disorder when toxins build up in the blood. Often begins subtlety with forgetfulness and “clouded thinking” but can progress to people becoming very confused and sleepy
• Jaundice: Yellowing of the eyes or skin
• Kidney problems or kidney failure.

Without treatment, advanced liver disease will get worse. But treatment can prevent this decline.

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What to do in an emergency

People with liver disease can develop potentially serious health problems.

You need urgent medical care if you:

• Vomit blood or do a black poo or a poo with blood in it. This could mean you have internal bleeding
• Have a high fever, particularly if you’re shivering, shaking, have dizziness, pain or vomiting. This could mean you have an infection
• Are confused, disorientated, drowsy or can’t be woken up. This could mean you have a serious condition called hepatic encephalopathy
• Have new, severe abdominal (belly) pain.

If you have these symptoms, you need to speak to your doctor urgently, get to a hospital Emergency Department, or call Triple Zero 000.

Less urgent problems that can happen are:

• Developing jaundice (yellow eyes or skin), or your jaundice gets worse
• Development swelling in belly or legs, or your swelling gets worse
• Obviously gaining or losing weight
• Not sleeping well, feeling vague, or having difficulty concentrating.

If you have these symptoms, speak to your doctor as soon as you can.

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What causes advanced liver disease?

Anyone can naturally progress to advanced liver disease if they have:

• Cirrhosis of any cause. Causes of cirrhosis include fatty liver, alcohol and viral hepatitis. They are more likely to develop advanced liver disease if the underlying cause has not been treated
• Liver cancer

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What are the symptoms of advanced liver disease?

As the liver function deteriorates, you might notice:

• Belly pain
• Extreme tiredness (fatigue)
• Confusion
• Being very itchy (pruritis)
• Yellow skin and eyes (jaundice)
• Muscle cramps
• Swollen legs
• Shortness of breath
• Nausea and vomiting
• Constipation or diarrhoea.

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How is advanced liver disease diagnosed?

It can be hard to predict how liver disease will progress. It’s different for everyone.

Your doctor may use different scoring systems to work out how severe your condition is and what your long-term outcome might be. These give patients a score based on the results of all your tests. Different types of scores used for advanced liver disease in Australia include the Model for End-Stage Liver Disease (MELD) score and the Childs-Pugh score.

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How is advanced liver disease managed?

Taking action can prevent and help manage the symptoms and complications of advanced liver disease. This can have a dramatic effect the wellbeing and the outcome of someone with liver disease.

Your doctor might consider these things to manage your disease:

• An improved diet and protein supplements to make sure you’re getting enough nutrition. People with advanced liver disease need much more protein than other people
• A low-salt diet and diuretics (pills to remove water from the body) to help with ascites
• Regularly removing fluid from the belly. This will make you more comfortable and improve your appetite
• Regular infusions of albumin every 1 to 2 weeks to help with your fluids
• Surgery to put a stent called a TIPS shunt  to improve liver function and symptoms
• Laxatives and antibiotics to deal with toxins in the body if you have hepatic encephalopathy
• Medicines to manage pain and itching.

Some people with advanced liver disease might benefit from a liver transplant. However, liver transplant may not be appropriate if there is a low chance of recovery. It might not help you long-term. Your doctor can discuss this with you.

If a liver transplant isn’t appropriate for someone, the liver disease will shorten their life. But managing symptoms will give them a better quality of life and delay them getting worse.

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How can I look after myself with advanced liver disease?

If you are told you have advanced liver disease, you can prevent your condition from getting worse by:

• Treating infections
• Looking after your teeth and gums
• Getting proper nutrition from a healthy diet
• Stopping alcohol
• Treating viral hepatitis if it’s not already being treated
• Making sure your diabetes is under control
• Taking all the medications your doctor has prescribed for you
• Making sure you go to all your check-ups. Be strict with getting the blood tests and/or scans that your doctors ask you for
• Exercise regularly to increase muscle strength and improve mobility.

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What next?

It’s hard to predict what will happen next. It depends on the amount of liver damage and what other complications or conditions you might have.

If you have end-stage liver disease, you might be referred to supportive and palliative care. This doesn’t mean you’re about to die – supportive and palliative care can be offered to any patient at any time to help manage their systems. Being actively engaged with supportive and palliative care can also extend life.

Some people with end-stage liver disease will also need to start thinking about end-of-life care. Now is the time to start thinking about the future, like having an advanced care directive and writing  will. It’s important for your doctors and loved ones to know your wishes if you can’t make decisions for yourself.

Living Well

 

Reviewed September 2024