Things to consider when you have liver disease
Many people with advanced liver disease have some degree of Hepatic Encephalopathy (HE). This may be so subtle that only someone close to you can tell that it is affecting you. It can affect you in a huge range of ways.
Mild symptoms can include:
- being slightly sleepy
- disturbed sleep patterns – sleepy during the day but awake at night
- having difficulty concentrating or remembering things
- seeming a bit less ‘with it’ and alert
- slightly lower performance in word games or calculations
- less clear or shaky writing
- perhaps a bit teary or more emotional than usual
More advanced symptoms can include:
- a tremor that prevents you holding a drink without spilling it
- personality changes
- staggering or falling
For example you may find yourself getting very irritable or even unkind with your close family. It is important for you and them to recognise that this is a symptom of encephalopathy, rather than a real change in the affection between you.
“The thing that upset me most was when my partner developed encephalopathy and I didn’t realise. If I had known about encephalopathy and its effect on personality I could have coped far better.” Lynda, Surrey.
Problems such as HE can be a sign of worsening liver function so it is important to discuss this with your doctor as soon as possible.
It is important to get both medical help and other sources of help for these symptoms and emotional issues. This can include help from mental health professionals, counsellors, social workers and social care staff which your medical team or GP practice will be able to direct you to, as well as from friends, family and organisations listed in the ‘Who else can help?’ section.
Many people with advanced liver disease feel very tired and have low energy levels. This can be due to your medical condition, external stresses or a combination of the two. Fatigue affects people differently and can come and go. One day you may feel able to live normally and the next you may have difficulty getting the energy and strength to do even the smallest tasks.
Planning your day and the week ahead is very important if you experience fatigue.
- Plan in time to rest during the day.
- Think about which things are the highest priorities for you and your family, and make sure these get done first.
- Be realistic about what you can do and don’t try to do too much.
- Ask for help, not just from your family, but think about which tasks a friend or neighbour might be able to do for you.
- Explain to people that you need to be flexible, so that you can leave early from a party or social engagement.
Some people also experience sleepiness, and can even fall asleep when talking. This can be due to fatigue, but it can also be a symptom of hepatic encephalopathy, which can be more serious. If you experience this sleepiness, talk to your doctor about it. They may prescribe medication such as lactulose, and you may be able to adjust the dose yourself until you get the best effects. You may also need to be admitted to hospital.
Some people experience sleep problems. This can mean that you need to sleep during the day, or perhaps that you have difficulty sleeping through the night. Plan your day to suit your body’s needs, taking naps during the day if you need to.
There are many sources of help if you are suffering from fatigue or sleepiness. There may be a hospital social worker who can direct you on to help or you can contact your local authority’s social services department. They can organise things like meals on wheels, home help, childcare or transport. You may have to pay for some of these services.
Some medications, particularly those for treatment of hepatitis C, can have side effects which affect people emotionally. Some people experience headaches, fatigue, depression, anxiety, sleep disturbance and poor concentration. There is some comfort in knowing that these side-effects are not unusual and it is ‘not just me’. It is also important to remember that treatment is for a limited time and many symptoms subside after the first month or so.
However, for some people, these side-effects are too severe or too dangerous to put up with. It is important to talk to your doctor about side-effects and how they are affecting you. Don’t just stop taking the medicines. It may be that the doctor can give you another medicine or prescribe something to help with the side-effects such as anti-depressants.
You may find it helpful to use a journal to record how you are feeling each day. This can act as a reminder of things to discuss with your doctor and can also show patterns in symptoms which it may be possible to address.
Having liver disease is not just a physical problem. It can place a huge burden on your body and mind.
- The physical tiredness and sleep problems that go with many liver diseases make it even harder to cope with the emotional burden.
- Many people with advanced liver disease find themselves feeling more emotional than normal.
- Fatigue can make people seem impatient and demanding.
- It can also make people withdraw from socialising and relationships, as they can be too much effort.
- Liver disease often fluctuates, meaning that one day you could feel well and the next be severely ill or too tired or sleepy to do anything. This makes it hard to predict and plan your life.
- Uncertainty is a big feature of liver disease. Waiting for a liver transplant is a particular strain, as people are left worrying and anxious on the transplant list. People on treatment for hepatitis C are not given certainty about whether the treatment will clear the virus.
All of this can leave patients and their families frustrated and anxious and place additional emotional strain on life. Try to explain to those close to you how you feel so they can help you plan your day and your week, and be sympathetic if plans need to change. Talking about your worries and how you feel can not only make them seem less, but allows your family to feel involved and can help to relieve their own anxieties.
“The people close to you are affected by your illness too. They can become sidelined if you leave them out of your day to day worries and concerns.” Phil, Hants.
Advanced liver disease can also reduce your sex drive (as can some of the medications used to treat it) and make it difficult to have sex. This is a sensitive area but one you and your partner should not be afraid to discuss with your doctor. Counselling, for you and your partner on the impact of liver disease on your relationship, may be helpful.
Serious illness can bring people closer and hugging or cuddling can be very comforting, especially if you don’t feel up to talking.
Attitudes to liver disease can make people even with only mild, or no symptoms, withdraw from friends and family, and make it hard to talk about how it affects you. This is one reason that support groups for people affected by liver disease can be a great comfort; you can meet and discuss how you feel with people going through the same experience. Support groups provide an opportunity to share tips and thoughts with sympathetic people in a safe environment. The Trust can provide information on support groups in your area.
It is also worthwhile thinking of other sources of support, including those in your local community. Some people find great comfort from the hospital chaplaincy service or from other types of religion.
What can I eat when I have liver disease?
When you have liver disease it’s important to make sure your diet gives your body all the nutrients you need. For many people, that means following a healthy, balanced diet.
Some people with liver disease will need to follow a more specialised diet. This can be because of the type of liver condition or the stage of liver damage you have.
If you have been diagnosed with cirrhosis or advanced liver disease you may need to consume more energy (calories) and protein than a healthy person of the same age and weight. You may also be advised to eat less salt to prevent serious complications and manage the impact of liver failure.
Having liver disease can make it hard to eat healthily, especially if you have been seriously ill. For example you might experience loss of appetite or feeling sick (nausea).Download our Diet and Liver Disease booklet
Please visit the support section of our website for information on Support Groups in your area.
Call our helpline or visit our online forum.Visit