Liver Recipient Transplant Co-ordinators
We are a team of specialist nurses who are involved in supporting you and our family through the liver transplant process. The process often starts with a liver transplant assessment, if a transplant is recommended we will place you on the liver transplant waiting list, see you regularly in clinic whilst you are waiting and call you in for a transplant when a liver becomes available. Following liver transplantation, we are available for advice and support for recipients who wish to write to their donor family,
What happens after liver transplant assessment?
After you have completed all your tests/investigations and had an opportunity to meet the members of the Liver Unit team and support group you can ask/ discuss any questions you might have, your case will be discussed by the medical staff and other members of the team. A decision will be made as to the best course of treatment for you as an individual; this may be a liver transplant or an alternate treatment option.
Occasionally there may be tests that are inconclusive or reveal problems which may require further investigation. you would be advised of this at the earliest opportunity. Whatever the outcome of the liver team’s discussion we will inform you be telephone or letter and invite you back for an appointment with the consultant and ourselves to discuss the results of the tests and how the decision was reached. If we are recommending liver transplant and you and your family are happy we will take this opportunity to put you on the waiting list.
You may be advised that it might be too early to consider a transplant as you are too well, in which case you will be regularly reviewed by the medical staff that will monitor the function of your liver. If a liver transplant is not felt to be the most appropriate form of treatment for you, you will be followed up in clinic either at QE.
If you are put onto the liver transplant waiting list your details will go onto the local elective waiting list in addition your personal and clinical details are sent to the national database held By NHS Blood and Transplant (a branch of the NHS which deal with organ donation and transplantation). During the listing process we ask for your consent to send these details electronically but would like to assure you they are completely confidential.
Most people are well enough to wait at home for a liver transplant but may need to be admitted to hospital on occasions. This may be for treatment/management of symptoms or because of being unwell due to infection of bleeding. During the waiting period there may be times when a person is too unwell to receive a liver transplant and therefore may need suspending from the waiting list until their condition improves. We will always tell people on the waiting list of they are suspended and reactivated
Unfortunately there are a number of people who continue to deteriorate before a suitable liver is found and transplantation would offer no benefit. In this situation the consultant would meet with the patient and their family to explain and the patient would be removed from the waiting list.
The Waiting List
Depending on your medical condition, you will either wait for your new liver at home or in hospital. Donor livers are matched to recipients according to blood group, height and weight and the severity of your liver disease.
Unfortunately it is impossible to accurately predict how long you will have to wait. A liver could become available from the day that you go on the liver transplant waiting list to many months later.
Whilst waiting for a liver transplant it is important you are closely monitored to ensure that you remain well and fit for a liver transplant. We will ask your local consultant to see you one month and we will review you in our clinic every other month or possibility more frequently if your condition dictates. It is important for you or a family member keeps us informed if you are unwell or admitted to your local hospital.
We would encourage you to have as normal a life as possible whilst on the liver transplant waiting list. We won’t recommend that you travel further than a 3 hour journey as it is important that we are able to get you to the hospital in good time. It is your responsibility to inform the Liver Recipient Transplant Co-ordinators
Where you are going
How you can be contacted while you are away
When you will return
On the time of going onto the liver transplant waiting list we will take all your contact details including family/friends contact numbers. We cannot stress enough how important it is that you and your family contact us with any detail changes whilst you are waiting for transplant, this can be done by phone or email. When a suitable liver becomes available the Liver Recipient Transplant Coordinator who is on call will first try to contact you at home, and then try your mobile followed by the numbers given at the time of listing. We will attempt to contact you repeatedly but you must respond swiftly.
If we cannot contact you we will have to offer the liver to another patient.
The Liver Recipient Transplant Co-ordinator will contact you when a liver has potentially become available. Please remember that despite being admitted to hospital for a transplant, this could be a false alarm as the transplant may have to be cancelled due to unforeseen complications. Whilst this is disappointing it is important to stress that the transplant has been cancelled as it would have been unsafe to proceed.
Attend your clinic appointments
Inform the Liver Recipient Transplant Co-ordinator if you are ill, admitted to hospital or planning to take a holiday or break away from home
Always keep your mobile telephone switched on and with you so we can contact you at any time
Inform the Liver Recipient Transplant Coordinator of any changes to contact details for yourself or those names given at the time of listing
If you are using your own transport to hospital ensure you know the route to the hospital
Remember that the call may be a false alarm
There is an overall shortage of organ donors; therefore livers are a very precious resource. All livers are considered for transplantation by a consultant transplant surgeon who will only proceed with liver transplantation if he is comfortable with the quality of liver for transplantation and its suitability for the intended recipient. The consultant will only select a liver for you that is felt to be appropriate for you based on your condition, blood group and size.
Types of Liver Donor
It is possible to transplant livers from the following types of organ donor.
Deceased Donor from Brain Death
Deceased liver transplantation is where a liver is removed from someone who has died as a result of overwhelming and irreversible brain damage called brain stem death. The liver is removed in the period of time following declaration of brain stem death and the heart stopping beating.
Deceased Donor from Cardiac Death
This is where a liver is removed from someone after they have died and their heart has stopped beating. As a result the liver may have suffered some damage from being without blood circulation for a short while. Therefore such livers are only used in certain patients where the consultants feel it is appropriate and this is discussed on an individual basis at time of listing.
Due to the shortage of livers for transplantation, we undertake live liver donation where a portion of a healthy individual’s liver is removed and transplanted into the relative or friend who requires a liver transplant. Only a small portion of liver is taken from the donor leaving enough to keep the donor healthy. If your doctors feel this is a suitable option for you they will discuss this and the potential risks with you and your relatives at the time of going onto the liver transplant waiting list.
Types of Liver Transplant
Whole Liver Transplant
This technique involves removal of the recipient’s entire old diseased liver and a whole healthy liver from a donor is transplanted.
Split Liver Transplant
In this technique the recipient’s whole diseased liver is removed. The donor liver is split into two, thereby allowing two patients to have a liver transplant from one donor. In general the smaller left lobe of the liver will be given to a child and the larger right lobe will be given to an adult. Following transplantation, each liver lobe will grow and form a whole liver.
Auxiliary Liver Transplant
This type of liver transplant is only performed in circumstances where the recipient’s liver may have a chance of recovery on its own, if supported such as in acute liver failure due to drug poisoning. This technique involves leaving behind some of the patient’s liver and performing a whole liver transplant. At the time of the operation. With time as the recipients own liver recovers and begins to function, the immunosupression used to keep the transplanted liver working is slowly withdrawn. This technique avoids the necessity of taking life-long tablets. It is only suitable in very few cases, and will be performed at the discretion of the transplant team.
Reduced Liver Transplant
Sometimes the new donor liver is too large for the recipient. The surgeons reduce the size of the liver by removing some of the donor liver segments.
Writing to your donor family
Here is some information and guidance on writing to your donor family should you at any time wish to write to them. It must be stressed it is your choice whether to write or not, and the timing of the letter is whenever you feel comfortable and ready to do so. Many people can find this a daunting experience and worry that they will cause further distress to their donor family. We know from speaking to donor families that they greatly value the personal correspondence they receive from the recipients. For more information please see main menu under “About your Donor”
It is important to point out that all donor families are given some brief information about you as an individual. In the follow up provided for them after organ donation they will have been told of your age, sex and a little about how you are doing post transplant. We find that many people are unsure what they should include in their letter. The information most often included is an expression of thanks and some idea of how the transplant may have altered your life, and the life of those around you. In order to maintain confidentiality we would advise you not to include your surname and address. The Liver Transplant Coordinators have examples of letters written by other recipients, which some people find helpful to look at. We are available for support and advice should you require further information about writing to your donor family.
When you have completed your letter you should send it to the Liver Transplant Coordinators. Your letter will be passed on to the donor family and they may or may not choose to write back. If we receive a reply we will contact you by telephone to discuss this before sending it to you.
Please send you letter to Liver Transplant Coordinators.