Living With Liver Disease
It is really important to build a positive relationship with your liver team and your local GP as they are there for you too. No question or concern is too silly and they’ve probably been asked the same thing many times before.
You can download our young people’s guide to living with liver disease here. If you’d like to hear from other young people like you, you can read their stories here. If you want to chat with other young people you can join Hive, CLDF’s social media platform for 13-24 year olds.
Click on the links below for further information:
To make the most of your appointment with your GP, hospital doctor or specialist, try to think about the questions you want to ask before you go and write them down.
As you get older, your liver team will want to talk to you more than your parents in order to prepare you for adult services. They will want you to take more responsibility for things like your medication and treatments, just as you’re taking on more responsibility in other areas of your life.
Before your appointment:
- Write down questions as you think of them.
- Run through your questions the day before. This gives you the chance to add or change anything and make sure you’re asking what you need to.
- Ask a friend or family member to come with you. They may hear things that you don’t.
- Talk to your parent/carer about the questions they’d like to ask.
During your appointment or meeting:
- Use your list of questions and make sure you ask everything you want to.
- Don’t be afraid to say if you don’t understand anything and ask for it to be explained again or differently.
- Feel free to make notes to help you remember what’s been said when you get home.
Tests and results
Depending on the type of appointment or meeting, additional questions may include:
- Checking that all tests have been done.
- Finding out when test results will be available or who you need to contact for results.
- What the test results mean – don’t be afraid to ask for them to be explained. The meaning of the results may flag up additional questions such as next steps.
After your appointment:
- Write down any notes and next steps.
- Book any tests or future appointment and make a note of the dates.
Keep a record of test results, these could be really useful during a future appointment, especially if your care is shared between two centres.
Someone might be bullying you if they are:
- Calling you names
- Spreading lies about you
- Teasing you
- Hitting or kicking you and causing you physical pain
- Taking your money or possessions
- Leaving you out or excluding you
- Threatening or intimidating you
- Texting you horrible messages
- Filming you on their mobile phones and spreading it around
- Sending you horrible emails or messages on Facebook and other social networking sites
Everyone has rights – including the rights to:
- Express your thoughts and feelings freely as long as you don’t take anybody else’s rights away or bully them in the process
- Live your life without being bullied
- Tell somebody if you feel unhappy or are being bullied
- Be treated well and to feel safe in your surroundings
- Be YOU
What can you do if you are being bullied?
- Don’t ignore bullying – it won’t go away. If you’re being bullied, it can make your life miserable. The best thing you can do is talk to someone about what’s happening. Ideally you should talk to your parents/carers. If you find it difficult to talk to them then it’s important to find someone else you trust
- Speak out! It’s important to keep telling people until it stops. The bullying may not stop the first time you tell someone, so keep ensuring you let people know what’s happening.
- If you are being bullied online on websites such as Facebook you can report it using the CEOP button (Child Exploitation and Online Protection Centre) button. No one should experience bullying. Seek support, do not cope alone and remember there is always someone there to listen.
Being bullied isn’t anything to be ashamed of and by talking about it, it shows that you’re not intimidated by it.
Keep a diary about how you are feeling. Try to write down your thoughts and feelings, it may help you to get things out so that you don’t bottle things up inside.
Keep a diary of the facts. Write down what, when and where the bullying happened and don’t delete any evidence of being cyber bullied as it can be proof if the bully denies their behaviour at a later date.
Communication is really important. If you think you know why the bully is picking on you (for example, because you’re off school quite a lot or because of your liver condition), sometimes taking action and sitting down with the bully is scary but if there is an independent adult you can ask, they could act as a mediator and the issue may be resolved by talking it through.
Try ignoring the bully’s comments/actions as it may take them by surprise. If you respond, you may be encouraging the bully to do it again, as they may want to get a response from you.
Don’t over share information. Protect yourself by not sharing information, such as your mobile phone number or online details to people you don’t really know or trust.
Remember it’s not your fault. No-one deserves to be bullied.
Disability Living Allowance and Personal Independence Payment
Disability Living Allowance (DLA) for children and Personal Independence Payment (PIP) are UK tax free social security benefits for people with an illness or a disability who need significantly more help than a well child, young person, or adult of the same age, such as:
- help with getting around, or
- help with personal care, or
- help with both of these
If you are over 16 when you make your claim, you will apply for Personal Independence Payment. If you are under 16, your parents will apply for Disability Living Allowance for Children on your behalf.
For more information on DLA, PIP and the difference between the two, visit www.gov.uk/disability-living-allowance-children.
How can I find out if I can claim?
There are various people who may be able to advise you on this matter. Locally, you could ask your health visitor, GP, social worker, hospital social worker or social services and Department for Work and Pensions (DWP) office. Patients referred to supra regional units may be able to speak to unit social workers (not every unit has a social worker) or clinic liaison staff who will be happy to help you. If a specialist social worker is not available, community and hospital social work departments usually have a duty social work system. You might find that you are directed to a call centre as a first contact point. Information of claim entitlement can also be found at gov.uk.
When should I claim?
Although people are normally only entitled to DLA/PIP when they have needed help for a period of three months or longer, you can register with the DWP as soon as it is clear that you child will require extra help for at least nine months or has been diagnosed with a long-term illness. If your claim is successful payment may be backdated to your first contact with the DWP
Where do I get a claim form from?
To claim DLA for someone under the age of 16 a claim form can be obtained by calling the DLA helpline on 0845 712 3456. Notes that will help you with completion accompany the forms. If you are over the age of 16 and are claiming PIP, contact the PIP helpline on 0845 850 3322. On requesting the form, it is then dated and you have around six weeks to complete and return. The claim form will have a return date recorded clearly on it when it arrives. Remember to photocopy the form and keep a copy for your records before posting.
What is transition?
Transition is the word used to describe the move to adult services. It is a period when you being to look after all aspects of your care including appointments and medication. You may move to a new hospital and you will have a new adult consultant.
What does transition look like?
This depends on your centre. However, it is likely to follow this pattern:
- Between the age of 12-16 your consultant will begin talking about moving to adult services
- During this time you may visit the new hospital and new consultant
- You should be introduced to a transition nurse around the age of 15-16
- Around the age of 15-18 you might attend a transition clinic. You can use this as an opportunity to ask questions about transition
- You will move to adults’ services when you are ready around the ages of 16-18. However, some centres will move you based solely upon your age.
In adult services you will attend a new clinic and have a new consultant. Depending on your centre, you should prepare yourself for the chance that you might see a different consultant each time in adult services, although some centres try to prevent this. There will also be a wide-range of people in adult services ranging from people of similar age to you but also much, much older!
What do I need to do?
Your consultant and transition nurse/support worker should explain everything to you. There should be the chance to attend a transition clinic and visit the adult sites and new consultant.
Try to ask all the questions you can think of if you are concerned or unclear. Your care professionals will have the answers and will want to help you.
Download the MyLiver App for a transition checklist and helpful tools to support you through the transition process and starting off in adult services.
The law and alcohol:
It’s illegal for anyone under the age of 18 to drink alcohol in licensed premises or public places.
There are some different laws which state:
Aged under 5 – It’s illegal to give an alcoholic drink to a child under five.
16-17 year olds can drink (but not buy) beer, wine or cider with a meal as long as it’s served with a meal and bought by someone 18 or over who is with you at the time. Some towns and cities have local by-laws banning the drinking of alcohol in public places.
If you have a liver disease then you already have some degree of liver damage. This means that your liver has less reserve to cope with processing any alcohol that you drink and it’s more dangerous for you to drink alcohol than for someone who doesn’t have a liver condition. In an ideal world, anyone with a liver condition wouldn’t drink alcohol as it could make their condition worse.
Lots of people worry about being the only one not drinking in social situations and lots of people worry about going to university as a non-drinker. The trust is you will adapt to not drinking. You may be happy still going on nights out and to the pub and not drinking but you may prefer to find other things to do and you’ll find friends who are happy doing the same thing.
In fact there are more young people who don’t drink than ever before and the numbers are rising every year so you are definitely not along. If you ever want to talk about drinking alcohol and any worries you may have then you can talk to others in the same situation on Hive, CLDF’s social media site, or you can get in touch with our Young People’s team who are always happy to have a chat.
There are some things to consider when thinking about the negative aspects of drinking alcohol:
- Alcohol is essentially a poison and can make you ill
- Binge drinking can have damaging effects on your body, including your liver
- Drinking alcohol can lead to weight gain and bad skin
- Drinking too much alcohol can lead you to make bad decisions, such as forgetting to take your medicines, carrying out risk taking behaviour and causing embarrassing situations.
If you do choose to drink, try and drink more slowly than everyone else, so you don’t drink as much. Swap between alcoholic and non-alcoholic drinks.
Make sure your drink can’t get spiked. Keep it with you at all times and make sure it’s covered. Don’t leave your drink and return to it later and don’t accept drinks from strangers.
Additionally, it’s important for you to know that mixing alcohol with energy drinks can lead to heightened dehydration that will have a stimulant effect on your heart. This means that your heart is forced to work harder and your cardiovascular system is put under strain.
For the purpose of this section, when we say drugs, we mean illegal drugs and legal highs, not medicines prescribed by your doctor or recommended by a pharmacist. There are many risks in using any drug; the only way to avoid the risks is to not take them. This advice applies to everyone but is even more important if you have a liver condition.
As with alcohol, drugs are metabolised (processed) by your liver. If your liver is already damaged it has less capacity to process these drugs. You can never know what exactly is in a substance that you take and some drugs may make your liver damage worse as well as the risk of interacting with legal medication that you are taking. This can have extremely harmful effects.
Equally it’s unlikely that any two doses are the same, so just because you take a drug once and don’t notice any immediate negative effects, this doesn’t mean you will have the same experience again and it doesn’t mean that the drug hasn’t done you any harm.
Drugs have three main effects:
- Stimulants – these drugs raise your heart and breathing rate along with your blood pressure, also known as ‘uppers’
- Depressants – these drugs slow down the activity of your central nervous system and can be referred to as ‘downers’
- Mind altering or hallucinogenic drugs – these can trigger disturbing experiences that can lead to dangerous and erratic behaviours, also known as ‘trips’
Legal highs; Novel Psychoactive Substances (NPS)
These drugs have a variety of effects combining all of the above. Many drugs that were previously sold as legal highs are now controlled under the Misuse of Drugs Act. This means they are illegal to possess or to supply to others.
Combining different drugs can produce unpredictable and sometimes very dangerous effects both on your body and mind. Even for licensed medicines, pharmacists have to look carefully at the effects they have on each other, so experimenting with illegal drugs, especially when you’re taking medicines, can be life threatening.
If someone tells you that they’ve experimented with drugs and they were fine, don’t assume you will have the same experience. This is especially important when you have a liver condition or have had a transplant because illegal drugs may affect you differently due to your condition, and also because of the different medication you may be taking.
It’s important for you to know that if you are prescribed medicines and are caught giving or selling them to someone else, you can be charged under the Misuse of Drugs Act (1971) in the same way as if you were intending to supply an illegal drug.
If you are caught in possession of an illegal drug you can receive a minimum of a fine or a two year prison sentence depending on what classification the drugs are. If you are supplying them, you could receive up to 25 years imprisonment.
It’s important to know that legal highs are constantly being made illegal. Not only do you not know what you are taking, you could also be in possession of, or dealing, an illegal substance.
Fertility is the ability to have children.
Fertility and liver disease in women
Fertility in women with liver disease can be variable depending on an individual’s condition and current health. Your ability to conceive (have a baby) tends to be related to the amount of damage to your liver. Generally, if you’re having periods (even if irregular) you should be able to conceive. Even if you don’t have periods, you can get pregnant. If you’re sexually active and your periods become irregular, or stop completely, you should let your liver team know.
Fertility and liver disease in men
Fertility in men with liver disease is also variable. Your fertility tends to be related to the amount of damage to your liver. Males whose liver is badly damaged and scarred (cirrhotic) will often have low hormone levels. This may mean that they shave less, have problems with maintaining an erection and possibly have a lower sperm production and quality. If you’re concerned about your fertility you should let your liver team know.
It is advisable to talk to your consultant when you are thinking of getting pregnant. Your consultant will be able to tell you how healthy your liver is and whether is it safe for you to become pregnant. They might suggest a change in medication or they may suggest you have any varices banded before becoming pregnant. Equally, with some medications it’s really important that you keep taking them throughout the whole pregnancy so make sure you find out.
Remember you can get pregnant the first time you have sex, even if you haven’t started your periods.
If you think you may be pregnant you should take a pregnancy test as soon as possible. You can get free tests through your GP, hospital and local family planning clinic. Pregnancy test kits can also be bought from a chemist or supermarket.
Pregnancy can be planned or unplanned. Having a baby is a big step for both partners. You may want to think about your age, the strength of your relationship and what both you and your partner want before trying to conceive or having unprotected sex.
If you are planning to become pregnant and have had a liver transplant, research suggests that waiting for a minimum of one year after your transplant will lower your risk of having a premature and low birth weight baby. If you find out you are pregnant, or think you might be pregnant, DO NOT stop taking your medicines, speak to your liver team as soon as possible.
If you become pregnant and have a liver condition, or have had a transplant, there is a slightly higher risk of miscarriage (losing your baby) and a slightly higher risk to your liver condition being unstable. There may be concern for females who have portal hypertension and varices when they are pregnant as there is an increased risk of bleeding. Ideally, if you have varices, it’s best if they are treated before you become pregnant. If you’re already pregnant, your doctor may ask for an endoscopy to check the varices during your second trimester (3-6 months of pregnancy).
You may also want to know:
If you have a scar on your stomach, keep it well moisturised during pregnancy. It may change in appearance, but this is normal.
If you are worried that you may pass your liver condition on to your child, then speak to your GP as they will be able to refer you to a genetic counsellor. Not all liver conditions are passed on from parents to their children, but if they are it can be helpful to talk to someone who can explain this to you. Genetic counsellors are specialists in the study of genes. They can talk to you about whether your child may inherit your condition, what the chances of passing it on are, and will discuss genetic testing for you, your partner and your child.
If you’ve been prescribed medicines for your liver condition, or after transplant, it’s important to take them properly. There may be times in your life when you are angry or unhappy about having a liver condition and taking medication but, by accepting that you need mediation, you make sure that you are in control and deal with your liver condition or transplant properly to ensure you are as healthy as you can be.
How you could take control of your medicines:
- Understand your liver condition. Ask as many questions as you need to and know what your condition means to you
- Get to know your GP and your liver team in the hospital and know their names and phone numbers. It will help you feel confident when speaking to them
- Make sure you attend all of your clinic appointments. Even if you feel well, it’s really important that you attend
- Know your medicines – understand why you take them, what they are called, their side effects and the right dosage
- Pick up your own prescriptions – put a reminder on your phone before they run out, or even download an app. There are lots around that can help you manage your medication and your life, including CLDF’s MyLiver App.
It’s important to remember to take your medicines regularly as, although missing one or two doses may not affect how you feel straight away, by the time you do feel unwell from missing doses, your liver may already be damaged. Be in control of your medicines and your health.
Taking other medicines
Herbal medicines and alternative therapies – there is little research to show the effects when taken alongside your prescribed medicines. They may interfere with medicines you are already taking and can be harmful. If there is something you are thinking of trying always run it by your liver team first.
Over the counter medicines – always check with a pharmacist before taking any additional non-prescribed medication and let them know about your other health conditions.
Vitamins and supplements – vitamins may be helpful but are not always necessary and in some situations may be harmful. If you are worried about your nutrition ask to speak to a dietitian at your liver centre. They can advise you on the best way to improve your diet and make sure your liver stays healthy.
Going on holiday and travelling are an important part of life. Whether it’s a few days with your mates or a longer trip you’re planning, it’s important to be prepared.
Before booking your holiday
Before you do anything, talk to your liver team and ask whether they think it’s advisable for you to go on holiday. Details of where you are thinking of going and what you are thinking of doing are important for them to know. It may be that a break in this country is ok, but flying or travelling abroad may not be advised. It’s important to know that many young people with liver diseases are still able to go abroad and go travelling but you do need to talk to your medical team to see if it’s possible for you at that time.
There may be limitations to flying with a liver condition or transplant and checks should always be make with your liver team.
It’s really important to always have travel insurance. There are many different types of travel insurance so use the checklist below to make sure you are getting the best policy for you.
Travel insurance policy checklist:
- Does the quote cover your medical conditions?
- If there is cover for chronic illness, does it cover: Loss of medicines? Hospital treatments whilst away?
- Does it include repatriation (sending an individual, some, or all family members home)? Is there an excess and at what level of care?
- What treatments are covered and is there a maximum cost allowed for treatment (capping)?
- Are there any countries that aren’t covered?
- Is there a cancellation penalty?
- Would you have to pay for treatment, and then return to the UK and provide proof of care given with receipts?
- If you are going to a number of countries, confirm with the insurer that cover applies to all destinations. Beware if you have not fully disclosed any illness and any medicines used, as well as any change in your condition or medication before departure, your cover may be void
- If you are travelling within the EU or Switzerland you can apply for a European Health Insurance Care (EHIC), as well as having your travel insurance
Below is a selection of travel insurers, recommended by others, who specialist in pre-existing medical conditions.
|Avanti Travel Insurance
Telephone: 0800 888 6195
Telephone: 0800 092 4939
|Good 2 Go Insurance
Telephone: 0330 024 9949
Telephone: 01708 339026
Telephone: 0345 246 8704
Telephone: 0333 331 3770
Telephone: 0345 90 80 161
Medical information on holiday
You will need to carry an up to date letter from your consultant or GP for insurance purposes containing details of your medical conditions, including whether you have had a transplant.
It’s also useful to take information regarding your medicines and dosages. In some cases it may be useful to explain why the medication is being taken as well.
Make sure you include the contact name, address and telephone/fax number of hospital unit(s) and any individual hospital reference numbers you might have. This information must be up to date as medicines and dosage may change.
Take two copies of any paperwork; one for your hand luggage and the other you should pack in your main luggage.
Medicines on holiday
Check that there are no restrictions on the medicines you are taking into the country you are visiting.
Be aware that if you are travelling for more than three months you may also need an export/import licence for any medicines.
Also consider if there is anything special you should take with you on your trip. Your doctor may advise that you carry a supply of antibiotics for traveller’s diarrhoea or an oral rehydration solution, for example.
If syringes are needed make sure you take an adequate supply, together with sterilising tablets for use with anything that is reusable.
Packing for your holiday
As security measures change and can be different depending on the airport and the airline, check the current situation regarding carrying medicines in your hand luggage before you fly. All prescription medicines should be carried with you, but you will need to ensure that:
- The medicines are in a bottle or package with prescription labelling
- Medicines are clearly marked with your name
- The name of the medicine and the dosage are clearly stated
- Any medicines are always accompanied by up-to-date documentation identifying the diagnosis and treatment of any liver disease or transplant in case of queries
- Look at the instruction leaflet on any medications. Some may need storage at specific temperatures etc.
Some medicines to treat liver conditions or transplants can cause increased sun sensitivity. Buy sun lotion with a protection factor of at least 25+ and follow the instructions.
When you arrive
Find out where the nearest doctor/medical help is available, so you know where to go if necessary. If you are in Great Britain, you can temporarily register with the local doctor if you need to.
It’s not uncommon to develop diarrhoea whilst travelling abroad. Be particularly careful and try to avoid:
- Uncooked or unpeeled food
- Ice cubes
- Tap water (use bottled or boiled water at all times, even for cleaning your teeth if the water isn’t suitable for drinking)
Becoming an adult can be hard but being a young person with a liver condition can be even tougher. It can help to hear stories from other young people in your situation.
CLDF has put this booklet together to provide you with information on what it’s like for others to be a young person with a liver condition and the different ways in which we can support you.