So you need a liver transplant?

Life on the waiting list and how to prepare for your transplant

What is the liver transplant waiting list?

If the results of your liver transplant assessment show that you are suitable for a liver transplant, you will be added to the liver transplant waiting list. Once you are added to the liver transplant waiting list, you will receive regular monitoring.

At this stage you will be given plenty of information and support. Most people are well enough to live at home while they wait. You’ll give your contact details to your transplant coordinator so that they can get in touch with you when a potential liver becomes available. It’s important that you keep in touch with your co-ordinator and make sure that you are contactable at all times. Some people even use a separate mobile phone just for this purpose so that they never miss that all important call. If your transplant coordinator is unable to contact you when a suitable liver becomes available, you could miss the chance of a transplant.

Equally you must keep in touch with your transplant co-ordinator and let them know if you have any unplanned hospital visits or there is a change in your condition. If in doubt, it is always best to let your transplant co-ordinator know.

Whilst you are on the waiting list, you may be called in because a potential liver has become available for you, but after further checking, it is not suitable, yet you find yourself halfway to the hospital or even already there. This does happen sometimes, and it can be an emotional and stressful time. Some people report having more than ten calls before the right liver was available for them. It is important that the transplant unit takes action as soon as they know a liver could be suitable for you and sometimes circumstances beyond their control mean that your transplant cannot go ahead on that occasion.

How long will I be on the waiting list?

There are many factors that affect how long you may wait for a liver transplant, such as blood group, weight and the type and severity of liver disease. The UK introduced a new system called the National Liver Offering Scheme in March 2018 to decide who is offered available organs for liver transplant first. The Liver Offering Scheme means potential organs (livers) for transplant are matched to patients on the waiting list in a more in-depth way than previously. This is expected to increase the number of lives saved and improved by liver transplant.

Can I still travel while I am on the waiting list?

Yes, you can travel. You let your transplant co-ordinator know if you plan to travel, as they need to know your location in case a potential donor liver becomes available. You may be suspended from the list for the duration of your holiday if you are travelling a long distance from the hospital, and would not be able to get to the hospital in time if you had a call for transplant.

Can I still work while I am on the waiting list?

Yes, if you feel up to it. Some people continue to work right up until their transplant, while others reduce their working hours or stop working altogether.

Once on the list, what sort of circumstance would result in me being suspended or removed from the list?

You may be suspended or removed from the liver transplant list if you are not fit enough to survive the surgery or if you have an infection (and sometimes if you are travelling). Your condition might even improve to such an extent that you become too well for a liver transplant (that means that your survival expectations without a liver transplant are higher than those you would have if you undergo the transplant operation), in which case you will be removed from the list.

What happens if my liver becomes extremely poorly once on the list and a liver isn’t available for a long time?

During your time on the waiting list, your liver centre will regularly update your progress in a national database. Therefore, if your condition does deteriorate, this information is incorporated into the National Liver Offering Scheme and included in decisions made about who the next available liver will go to. This is one of the potential advantages about the new scheme.

What are my chances of surviving the operation? What’s the life expectancy after transplant?

The one, 5 and 10-year survival rates following liver transplantation for PSC are excellent 79.

Can someone I know donate their liver?

In certain circumstances, a living person can give some of their own liver to help someone else. This is called Live Donor Liver Transplantation (LDLT).

How do I explain I need a liver transplant to my children?

This is not easy but the patient support group at Addenbrooke's have come up with a fantastic aid with author Julia Rawlinson.

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