This sheet answers common questions about being active on the national transplant waiting list for a kidney transplant. If you would like further information, or have any particular worries, please do not hesitate to ask your nurse or doctor. In all cases, a doctor will explain any next steps to you and answer any questions you may have.

What is the national kidney transplant waiting list?

The national kidney transplant waiting list is a list of all the people in the UK who are waiting for a kidney transplant.

The transplant waiting list is not a queuing system but is more of a matching system where many factors are used to decide which patient is most suitable for the next kidney. The average wait for a kidney transplant in the UK is three years, but some patients can wait a lot longer.

Being active on the waiting list

When you are active on the list, this means you are now eligible to receive a transplant and will be offered a kidney when a suitable match is available.

The offer of a transplant can come at any time. We will contact you via telephone when an offer comes up. Make sure your phone is always switched on and you answer all telephone calls, especially blocked telephone numbers. We will try all telephone numbers that you give us, including landline telephone numbers.

If we cannot get hold of you, we will have to offer the kidney to someone else.

Keeping your contact details up to date

To avoid missing an offer, it is very important that your contact details are up to date. Report any changes to your phone number or address to the hospital and make sure we have contact details of anyone else you want us to contact if an offer comes up. 

Going on holiday

When you go on holiday, please inform your nurse or doctor. You will be temporarily suspended from the waiting list until you return to UK. Make sure you tell your doctor or nurse when you come back.

What happens if I am offered a kidney?

When you are offered a kidney, you will be asked to come to the Royal Free Hospital as soon as possible. On arrival you will be assessed by a doctor and have bloods tests and other tests. You may need to have dialysis before the operation.

Not every organ offer results in a kidney transplant. Each deceased donor is different, and some organs have a higher risk than you or your transplant team may be willing to accept. Some organs may be damaged or not suitable for transplantation and sometimes the organ retrieval does not go ahead.

If your transplant team thinks the offered kidney is suitable for you, they will tell you some information about the donor to help you make the decision on whether to accept the kidney or not.

What if I know someone who wants to give me a kidney?

Living donor kidney transplant is the best way to receive a kidney transplant with a shorter wait to transplantation and a kidney that is likely to last longer than a deceased kidney.

If you have a potential live donor in the UK or overseas, please ask them to telephone the living donor nurses on 0207 317 7604 or email rf-tr.rldn@nhs.net.

Potential donors in another country

If you have potential kidney donors in another country, we can assess them as potential donors for transplant in the UK. Transplants from donors in another country can take place as long as this meets legal requirements from the Human Tissue Authority (HTA).

Going to another country for a transplant

A transplant from a living or deceased donor in another country can be undertaken legally, when it is within approved legal, ethical and healthcare frameworks. It is illegal to ask for or offer rewards for donating organs for transplant. It is also illegal to be involved in buying or selling human organs (Human Tissue Act, 2004).

The Royal Free London is legally obliged to report any person returning to the UK after receiving a transplant abroad. Further investigation will be undertaken by the HTA, which can lead to prosecution if you are found to have broken the law.

For more information on travelling outside the UK for organ transplantation, visit the HTA website: www.hta.gov.uk/Travelling-for-organ-transplants.

Staying healthy for a transplant

It is important to keep yourself fit and healthy. If you are unfit or put on too much weight, we may have to stop a transplant going ahead or remove your name from the waiting list. Make sure you eat healthily and take regular exercise (such as walking).

Some good ideas on staying healthy can be found here: www.beamfeelgood.com/kidneydisease.

Getting vaccinated for your transplant

Staying healthy and avoiding infection is important. If you have an infection when you are called for a transplant, we will not be able to give you the transplant. After your transplant, you will also be more likely to get infections.

It is better to be vaccinated before your transplant, as you may not respond to vaccines after your transplant. We recommend that you are up to date with all your vaccinations. Please ask your GP whether you need to have any booster shots.

If you are not allergic to vaccines, we recommend that you have the annual flu vaccine and a full course of COVID vaccines. All kidney patients should be vaccinated against Hepatitis B. We recommend that you are up to date with Pneumococcal vaccines and have had vaccination for diphtheria, tetanus and pertussis.

If you are over 50, we would recommend having the Shingrix vaccine to reduce your risk of getting shingles.

Please discuss your vaccines with your GP.