Taking care of yourself
If you’re at home waiting for a liver transplant, try to keep yourself in the best of health and look after your liver, so you’re ready for the operation when it comes. If you need advice or support, speak to your transplant team.
- Make sure you attend all your hospital appointments, including consultations and scans. You’ll also need to go to your GP to have monthly blood tests so your transplant coordinator can update your transplant waiting list records.
- Take all your medicines as instructed. And speak to your team before starting any new medicines, including ones prescribed by a doctor as well as ones you buy over the counter.
- Eat a well-balanced diet. Your hospital can give you advice if you’re unsure as they may have a specialist dietitian.
- Do some regular physical activity. This will make sure you’re as fit as possible before your operation and will do better after it. Maybe a daily walk or a swim, whatever you like doing so you’re more likely to keep doing it. If you’d like advice about what you can do, ask your liver transplant team.
- Don’t smoke. If you smoke it will affect the chances of your surgery being a success. If you need help to stop, talk to your transplant team who will ensure you have the right support.
- Don’t drink alcohol or use drugs. Your transplant team can offer you support if you’re finding this difficult. It’s important to reach out for help.
Be ready
Make sure you organise things in advance so you’re ready for when the call comes. Here are just a few suggestions – ask your transplant team for more.
- Don’t go too far away from home so you can get to hospital quickly when the call comes.
- Keep your transplant team up to date. Make sure your transplant coordinator has your current contact details and if anything changes, let them know. Also tell them if anything changes with your personal life or your health, such as if you get an infection, or you take any new medicines.
- Talk to your transplant team about how you will get to hospital when you get the call to have a liver transplant. You may wish to make your own way to hospital. If you need hospital transport this may be available but you’ll need to let your team know in advance.
- Pack your things so you have a bag ready to grab and go.
- Arrange childcare, pet care, or other responsibilities. Have some plans set up with someone who can help at short notice.
- If you work, let your employer know your situation and that you may need to take leave at short notice.
Questions to ask
- How long will I be on the waiting list – could I be taken off it for any reason?
- How much notice will I be given if a donor is found?
- Can I eat or drink anything before I come into the transplant centre? – what if I had just eaten before the call came through?
- Do I have a good chance of a new liver for my circumstances?
- What support is available while I’m on the waiting list?
What to expect from your transplant team
You’ll have a regular review with your transplant team, every 6 weeks or so, while you’re on the waiting list to check your health, and that a liver transplant is still a safe and effective option for you. You’ll have some of the tests again as part of these reviews.
You’ll go into hospital as an outpatient to have some health checks. They’ll keep you updated about your health and if there’s anything you need to do. For example, if you get an infection, it’s important to get treatment.
The waiting list isn’t like being in a queue where you wait and eventually get to the top of the list. The liver is allocated to the recipient who is in greatest need, with the best chance of the liver transplant being a success and who will receive the most benefit from a transplant from that particular donated liver.
The right liver goes to the right person at the right time.
Talking to others who are in a similar situation or who have already had a transplant can be helpful. Some hospitals have their own support groups or mentors.
Being taken off the waiting list
Sometimes you can be taken off the liver transplant list, and this may be temporary or permanent. This can be for a number of reasons.
A temporary break
You may wish to temporarily take yourself off the list if you have a family function, such as a wedding, to attend, or want to go on holiday. Your transplant team will allow you to take a break but it’s important to let your transplant coordinator know how long this will be for.
Alcohol/drug use issues
If you have alcohol-related liver disease and your transplant team has advised you not to drink but you do, you must contact your addictions nurse or transplant centre for advice. If you don’t tell your team what is happening and are found to be using alcohol, you’ll usually be removed from the waiting list at that centre.
Sometimes you may be offered a second opinion at another centre. If you’re able to demonstrate that you have since made changes to support lifelong abstinence, you could be given another chance. The most important thing is that you’re open and honest with your team so they can support you in the best way possible.
Liver cancer and other health conditions
If your condition gets better or worse you might need to be removed from the list while your need for a transplant is reassessed. This can also happen if you develop a related condition, such as a new liver cancer.
If you develop a new liver cancer that can’t be cured or is outside of transplant criteria, you may be permanently removed from the list as a liver transplant might not be the best treatment option for you anymore. If you get another unrelated health condition, you may be removed temporarily. Your transplant team will talk things through with you in your monthly reviews.
Support
This can be a very difficult and anxious time. There are a number of support services that can help you. We have a helpline, online community and a range of support groups to help answer questions, share experiences, or just listen.
You can find more information and useful links on our looking after your mental health page.
What happens when a donor is found?
Once a donor is found for you, your transplant team will contact you. This can be at any time, day or night. You’ll need to go to the transplant centre straight-away, but safely.
While you may be excited a match has been found, all organs from donors carry some degree of risk so this must be balanced against the benefits of having the liver transplant, and the risks of waiting for another donor. Your surgeon will make the final decision on whether the liver is the right match for you.
