Transplant wait list

What do I do when I'm on the transplant wait list?

Waiting time for your liver transplant can vary from a single day to months or years, until a suitable donor is available. While waiting for a transplant, you will return to the Royal Prince Alfred Hospital for regular follow-ups (usually monthly).

When you are on the waiting list, you must be ready and available for a transplant call at any time of the day or night. You will need to have travel arrangements in place. The contact details we have for you must always be updated (even if they only change for a short period of time).

At all times, the final decision to have a transplant is still up to you.

Maintaining your health while waiting for a liver

Lifestyle modifications can make a significant difference to your current quality of life, suitability options and post-transplant recovery. You do not have to wait for a transplant to start improving your lifestyle, follow these steps to help: 

• regular follow ups to monitor your symptoms
• have a good diet
• mobilise as much as possible
• avoid alcohol
• follow your prescribed medications

What if I become unwell while on the waiting list?

Between 07:30 am and 17:00 pm, contact your liver transplant nurse.

Between 17:00 pm and 07:30 am, call RPA Hospital switchboard on 02 9515 6111 and ask for the Gastroenterology Registrar on-call.

If your symptoms are acute and urgent, call Emergency on 000.

If your symptoms are unrelated to your transplant or liver disease, see your local General Practitioner.

If you're admitted to another hospital aside from RPA Hospital, please ask the team caring for you to contact the RPA Hospital Transplant Unit to update us on your condition.

How is the next liver transplant recipient determined?

When a donor liver becomes available, it is first offered to the local Australian state-based liver transplant unit.

If the originating state is unable to use the liver, the organ is referred to the other transplant units in Australia and New Zealand on a rotational basis. Occasionally a liver will be offered interstate for a patient with severe liver failure in intensive care requiring urgent transplantation.

A recipient is matched from NSW liver transplant waiting list based on blood group, body size and priority. Priority is determined based on a clinical assessment of liver disease severity and a 'model for end-stage liver disease' (MELD) score (a formula calculated using blood test results).

What happens when a suitable donor has been found for you?

You will be contacted by the liver transplant coordinator and asked to activate the travel arrangements as discussed with the Liver Transplant Coordinator. Ideally, you should travel with at least one member of your family, although this is not always possible. The coordinator will tell you the time when you should stop eating and when to attend the RPA Hospital emergency department.

Cancellation of surgery

A decision not to proceed may be made at any time through the process as new information comes available. If the liver is found to be unsuitable for you at any point then the procedure will be cancelled. It is quite possible that you could be contacted on more than one occasion without the transplant going ahead. While this is obviously disappointing, it would be in your best interest not to proceed to transplantation under such circumstances.

Consent for surgery

During your surgical assessment appointment, all risks associated with the transplant operation will be outlined and your transplant nurse will ask you to sign a consent form.