What to expect from the UKLKSS at Leeds Renal Unit

Please read the NHS Blood and Transplant Leaflet “UK Living Kidney Sharing Scheme, Your Questions Answered” before reading this leaflet. It can be found on the Kidney/Renal Unit, patient information leaflets web page:

UKLKSS

The scheme is becoming increasingly successful in providing options for pairs where direct donation is not possible.

However we understand that the unknown aspects of the UKLKSS can be daunting. We hope you find the following information helpful and you are welcome to ask us any questions.

Basics of the UKLKSS:

You donate anonymously to someone else and their aspiring donor donates to your recipient based on a national matching system and pre-arranged theatre dates. All the surgeries in the chain/ exchange are done on the same day unless logistical challenges mean that a “split” chain is necessary. This will be discussed with you in more detail if this becomes needed.

You do not have to travel to a different hospital to donate.

There are many advantages of the UKLKSS over waiting on the deceased donor transplant list as the recipient still receives all the benefits of a live donor kidney.

Timeframes

The UKLKSS has four runs per year: January, April, July and October.

The live donor team will contact you prior to each matching run to check that you are well and you wish to enter the upcoming matching run.

If you have significant life events or holidays scheduled you may wish to let us know so we can discuss whether it will have any effect on the matching run.

The matching run takes place at the very end of the month. There is then a process of checking and verifying potential matches which usually takes one to two weeks. Following this we will contact you to inform you whether you have been matched or not.

Expected matching run timeframe

Matching run – January

• When can I expect to hear?
  First or second week of February.
• Likely surgery time?
  March or early April.

Matching run – April

• When can I expect to hear?
  First or second week of May.
• Likely surgery time?
  June or early July.

Matching run – July

• When can I expect to hear?
  First or second week of August.
• Likely surgery time?
  September or early October.

Matching run – October

• When can I expect to hear?
  First or second week of November.
• Likely surgery time?
  December or early January.

Deciding on a surgery date takes a lot of negotiation with the other centres involved in the exchange as well as booking theatres and transport. We will keep you informed of the process and any possible dates as soon as we can but please be aware this may take several weeks.

Important things to note

Deceased Renal Transplant List:

If you are usually “active” on the deceased donor transplant waiting list, you will be “suspended” from the list once you have received a match in the UKLKSS and we are in the process of arranging surgical dates. Should your UKLKSS match not proceed for any reason and you remain well enough for transplant, you can be reactivated on the deceased donor waiting list.

Social media:

UKLKSS matches are anonymous. This means that no donor or recipient should be aware of which other centres or individuals are participating in their exchange. Therefore we ask you to refrain from posting about the kidney sharing scheme on social media. If you do wish to publicise your happy news of a UKLKSS match, please do not include the date of your surgery as this would jeopardise confidentiality. For guidance with this, please ask your live donor-co-ordinator.

Anonymity and information about your donor or recipient:

After you have had your surgery you may, if you wish, know the approximate age and gender of your donor/recipient. After a short recovery time, you may also learn how your matched donor/recipient is doing. It can be great to hear that your matched donor/recipient is recovering well, however it is worth noting that not all recoveries are straight forward. If you wish to write to your donor/recipient once you have recovered please ask your live donor coordinator how to go about this.

Potential complications:

Whilst the UKLKSS is a fantastic way of overcoming incompatibilities and getting a live donor transplant, it can be unpredictable in nature. Given that an exchange can involve three or sometimes four centres, if anything unexpected happens at any of those centres then there is a chance of the exchange being postponed or cancelled. For example, if a donor or recipient from one of the other centres becomes too unwell to go ahead. If delays or cancellations do occur your live donor team will be here to support you.

A note from a Leeds donor who donated via the UKLKSS:

When I discovered that I couldn’t donate directly to my son I was absolutely devastated. But then I realised that it didn’t really matter whether it was my kidney which saved his life, what mattered was that I did everything I could to help him. Now I can look back at it, I am incredibly grateful to the person whose kidney he’s got; it’s done so much for him. I hope that somewhere out there someone else is healthy and able to enjoy life again because of my “leftie”.

Contact us