At the Royal Infirmary of Edinburgh the donor transplant co-ordinators also care for people who require kidney and combined kidney / pancreas transplants.

Their role includes:

 

Assessment for Transplant

When you are approaching end-stage kidney failure your renal doctor will discuss your treatment options with you. This may include transplantation, though this is not a suitable treatment for all patients and therefore individual assessment is performed. Some routine investigations are carried out to ascertain your health and fitness, you may require more detailed tests if necessary.

If appropriate, your renal doctor will then refer you to the transplant assessment clinic. An appointment will then be made at the Transplant Assessment Clinic in the Royal Infirmary of Edinburgh or Ninewells Hospital, Dundee, depending on where you live.

At this appointment, you will meet the transplant surgeon and transplant co-ordinator to discuss transplantation as a treatment option. Much of this information will be in the booklet you will be sent with your appointment card, and we recommend you read this prior attending, and write down any questions you have. This visit will give the surgeon an opportunity to discuss at the length the transplant operation and assess your suitability for surgery. It can take up to one hour and it is advisable to bring a relative or friend with you.

You will have plenty of time to ask questions. In most cases the surgeon will be able to tell you at this appointment if transplantation is the best option for you – and ask if you wish to have your name placed on the transplant list. The surgeon may request further investigations and/or schedule another appointment. In some cases the risks of transplantation are too great for an individual and it would not be the best option. This will always be discussed with the patient. Sometimes people will be re-referred if there is an improvement in health in the future and the risks reduced.

The transplant co-ordinator will have a detailed discussion with you and your family about living life on the transplant list, the operation, risks and benefits and follow-up. If your name is to be added to the list, the transplant co-ordinator will complete the necessary paperwork and send your details to UK Transplant in Bristol, where the database of people waiting on a transplant is kept.

When you are active on the list it is extremely important to let the transplant co-ordinators know if you change address or telephone number or if you go on holiday. If you are over 60 years old, diabetic or have been listed for more that 2 years you will be reviewed in the transplant assessment clinic on an annual basis. If you have any change in your health whilst on the transplant list your renal doctor may also arrange for a review in the transplant assessment clinic.

Who decides who should get the kidney transplant when over 5000 people in the UK are waiting?

There is a scheme that is agreed across the UK on how kidneys are allocated. This is managed by UK Transplant, a special health authority based in Bristol.

For further information on organ allocation please look up the UK Transplant website

 

Care following transplantation

When you go home after a kidney transplant you will be seen frequently at the transplant clinic. Routine appointments in Edinburgh are: -

The above is a guide, more frequent visits will be necessary is you have any problems with infection, kidney function or other illness.

It is essential that you attend all the clinics as in many cases there are no signs of rejection and it can often only be detected by assessing your kidney function by carrying out blood tests. If rejection is recognised early then it will usually respond to treatment. This will require an increase dose of anti-rejection drugs and/or changes to your medication.

At the out-patient clinic you will also have your

 

Annual Review

Once a year the transplant co-ordinator will send you a letter asking you to attend for an Annual Review. This appointment is different to the normal appointments and it aims to provide health promotion and education for each transplant patient. The transplant co-ordinator will carry out a health check that aims to:

At the annual review the transplant co-ordinator will undertake:

The transplant co-ordinator can be contacted at any time throughout the year if you would like to discuss any of these issues or if you would like to discuss anything regarding any of issues surrounding your transplant.

 

Further information about transplantation

See the links at the foot of the Kidney Transplantation page in EdRenINFO. We produced the Transplant booklet, Photo-story, and other information.


A 'day in the life' of a transplant coordinator << >> The Donor Liaison Scheme