Going on the transplant waiting list

Some illnesses can affect how well the transplant works. If you’re unwell, tell your transplant team straight away. They will put your place on the transplant waiting list on hold until you’re well enough to have the operation. This means you will be ‘suspended’ on the list and won’t be offered an organ when you’re not well enough to receive it. It’s only temporary until you are fit enough for a transplant. 

If you have a serious, long-lasting illness, you may need to have more tests before you can go back on the list. This is to check you’re still able to have a transplant within an acceptable risk level. With all transplants, the benefits must outweigh the risks. If the risks are too high, it may be better for you to come off the list completely. This will be discussed with you.

If you are admitted to hospital for any reason it is important to tell your pancreas team. This is so they can decide whether your place on the list needs to be put on hold or not.

Make sure your medical teams have your most up-to-date contact details so they can reach you if an offer comes in.

This includes:

• Home phone number
• Mobile phone number
• Work phone number
• Phone numbers of your next-of-kin

You need to be contactable at any time of the day or night once you are ‘active’ on the transplant waiting list.

Always keep your phone switched on

If your transplant team cannot contact you within 45 minutes of receiving an organ offer, they may need to turn down the offer. You can’t receive a transplant if your transplant team can’t contact you.

If you have kidney disease and ever need dialysis outside the UK, it is important to tell your transplant team. They will need to decide whether your place on the list needs to be put on hold temporarily. This is because in some countries outside the UK there is a risk of picking up serious infections during dialysis treatment that could cause serious harm to you after a transplant. You might need to wait a few months after you get back to the UK until your team can be sure that you haven’t picked up an infection. You can then go back on the transplant waiting list.

At least once a year you will be reviewed by your transplant team to check you are still fit enough to stay on the list. You might require further tests.

Your transplant team will tell you how to get to the transplant unit if you have been offered a pancreas (or a kidney). You must have travel plans in place.

We understand your condition and that waiting a transplant is very stressful for you and your loved ones. If you feel that you need extra support to cope with this, please contact your transplant team. Social workers and psychologists are available to offer advice and support. There may be other transplant patients who can offer advice and support – your transplant team can arrange for you to meet them.

If you have questions about your medications or health while you are on the transplant waiting list, please ask your care team.

More about support

Your transplant team may ask you to be involved in one or more research studies, either before the transplant or after it. They will explain this to you in more detail.