Kidney transplantation can offer you the chance of a much improved quality of life with many benefits which include:
- Freedom from dialysis
- More energy
- Removal of dietary and fluid restrictions
- On average, a longer life expectancy
Unfortunately not everyone is suitable to receive a kidney transplant and therefore your suitability will be assessed on an individual basis.
Patients from York, Bradford and Hull are usually assessed for their suitability to receive a kidney transplant in their local hospital. Once activated on the kidney transplant waiting list you will be sent an appointment to come to our consent clinic at St. James’s Hospital to meet one of the Leeds co-ordinators and one of our Consultant Transplant Surgeons who will talk through the surgical consent form with you.
Being assessed for a kidney transplant
Kidney transplant is a potential treatment option for patients on or approaching dialysis. Kidney transplantation can offer many benefits including an improved quality of life and freedom from dialysis. Unfortunately many patients (including over half of patients on dialysis) are not eligible to receive a transplant. This can be due to a range of medical and non-medical problems including severe heart disease, active cancer and poor circulation.
If you would like to be considered for a kidney transplant please speak to your Doctor when you are next in clinic.
When you have completed all of the tests required as part of your assessment your case will be taken to a transplant MDT. This a meeting attended by Consultant Transplant Surgeons, Consultant Nephrologists (with a special interest in kidney transplantation) and Renal Transplant Co-ordinators. Occasionally different specialists will also be asked for their opinion of your suitability. The outcome of this meeting will either be:
- You are accepted onto the transplant waiting list – this does not mean that you are considered for kidney offers straight away
- You are not accepted onto the transplant waiting list and you will be informed of the reason for this
- You require further investigations or reviewing by another speciality – you will be informed of the details
When you have been accepted onto the transplant waiting list this is an ideal time for any potential live kidney donors to commence their assessment.
Being called in for a kidney transplant
From the time that you are active on the transplant waiting list it is possible that you could be contacted to come to St. James’s University Hospital for a kidney transplant. Therefore when you are active on the waiting list your transplant co-ordinators need to know:
- How to contact you 24 hours a day.
- If you are going on holiday and will not be able to travel back to Leeds within a few hours
- if you are unwell or have any new medical problems
When you receive the telephone call
When you are on the transplant waiting list, unless you have a planned date to receive a live donor kidney transplant, you could be called in for a transplant at any time of day or night. Most people are telephoned and asked to come to St. James’s University Hospital between 10pm and 6am. We will try calling all of the contact numbers which we have for you for 2 hours. If we are unable to speak to you, your family members or friends within this time we will offer the kidney to another patient. It is therefore important that you always notify your local transplant co-ordinators of any changes in your contact details.
When we contact you to come in for a transplant it is because we have been offered a deceased donor kidney transplant for you. There is never any guarantee that the transplant will go ahead. You will normally have up to 4 hours to travel to Leeds, we do not want you to speed or take risks to get to St. James’s Hospital. We will ask you to come to either ward J49 or J50. If you are not familiar with St. James’s Univeristy Hospital we recommend that you carry out a practice run.
Once you arrive on the ward your fitness for surgery will be assessed to ensure the risks associated with a general aneasthetic and transplant surgery do not outweight any potential benefits. Once the kidney arrives (this may be a number of hours after you have arrived) one of the Consultant Transplant Surgeons will inspect the kidney and assess whether it is suitable to be transplanted into you. The Transplant Immunology Scientists will have to confirm that the kidney is a match for you, this could take up to 4 hours and can only commence once we have blood samples for you and samples from your kidney donor.
Once we know that:
- You are suitable to undergo a kidney transplant
- The kidney looks suitable for you to receive
- The kidney is a match for you
The operating theatre will be arranged as soon as possible.
Combined kidney and pancreas transplants
Being considered for a combined kidney and pancreas transplant.
Certain people with both kidney failure and Type 1 Diabetes may be considered for a simultaneous kidney and pancreas transplant.
If your Doctor feels that this is an option for you the transplant co-ordinators will contact you and provide you with some written information. A series of tests will then be organised including:
- A chest x-ray
- An ECG (heart tracing)
- A MR scan of the vessels in your pelvic area
- A heart stress test
- A cardio-pulmonary exercise test (where you are asked to cycle on an exercise bike or run on a treadmill whilst your heart and lungs are monitored)
Simultaneous kidney and pancreas transplants are not carried out in Leeds. The results of these tests are therefore then passed onto another centre (normally Manchester or Newcastle). You will then be offered an out patient appointment at this centre. Providing you are accepted onto the combined kidney and pancreas transplant waiting list you will be activated once some blood tests have been processed.
When a potential organ match has been found you would be called into your centre (Manchester or Newcastle) and if the organs are suitable you will undergo an operation where a pancreas and a kidney from the same deceased donor are transplanted into you. You have to remain in this hospital until you are ready to be discharged home. Your out patient care will then be based in the centre where you received your transplant until they discharge your care back to Leeds.
When successful, this type of transplant offers a treatment option for both your kidney failure and your diabetes.
Dietary advice before and after a kidney transplant
Due to the increased risks of surgery when overweight, you will have to have a BMI (body mass index) of below 35 to be active on the kidney transplant waiting list but ideally this should be below 30. People with a BMI of over 35 may be considered for a transplant on an individual basis. If you are unsure what your BMI is your dialysis or clinic nurse will be able to tell you. Even if your BMI is below 35 but still in the overweight range your risks during and shortly after a kidney transplant will be reduced if you are able to lose some weight. Please ask to speak to a renal dietitian for advice if you are attempting to lose weight.
If you know your height and current weight, you can calculate your BMI.
After a kidney transplant it is important that you still keep yourself healthy. It can also be easier for you to put on weight.
Having a kidney transplant – the operation
Please visit the patient leaflets section and look for the leaflet ‘Kidney Transplant: The Operation’. There is also an easy-read version available.
Joining the Kidney Transplant Waiting List
Once the transplant team have agreed that it is in your best interests to receive a kidney transplant you will be contacted by the transplant co-ordinators. Before you are active on the list the following needs to be completed:
- You will be sent an information pack to read through
- You will need to attend an appointment with one of the transplant co-ordinators. This is to ensure that you understand and accept the potential risks in addition to the benefits of receiving a kidney transplant and understand what to do when you are called in for a transplant
- Blood tests will need to be taken and processed in order to obtain information about which kidneys are a match for you. This usually takes up to 6 weeks
This is an ideal time for any potential live kidney donors to start being assessed.
Post-transplant care and medication
Outpatient clinic appointments
Patients who have their care based in Hull, Bradford or York will be have their care followed up in their respective hospital from the time that they are discharged from the ward. Patients who previously had their care based in Dewsbury, Halifax, Huddersfield, Pontrefract and Wakefield will have all of their post transplant care in Leeds.
The renal (kidney) transplant clinic is held on a Monday, Wednesday and Friday morning. They are staffed by senior Doctors. At each clinic visit you will be asked to supply a urine sample (bottles are provided). After seeing a Doctor you will be asked to have a blood test. There is a water fountain in the waiting area for you to take your anti rejection medications after your blood test.
Patients who have recently had a transplant (usually for the first month) will have three appointments a week. On a Monday and a Wednesday this is a nurse led clinic therefore you will not have an appointment with a Doctor. One of the Nurses will weigh you and carry out a general assessment. You will then have blood tests. If the Nurse or yourself have any concerns one of the Doctors will be notified. On Friday mornings you will have an appointment with a Doctor.
Your anti-rejection medications are always supplied by the hospital. Prescriptions can be arranged when you have an appointment with a Doctor. You will be asked to monitor the number of tablets which you have left to ensure that you do not run out.
After the first month your clinic appointments will probably reduce to weekly and become less frequent as your health improves and kidney function stabilises.
Nurses are available in clinic for help and advice but you can also telephone with any questions.
Please visit our resources section to read our patient information leaflet on ‘Alemtuzumab’ (a medicine used to prevent transplant rejection) and ‘Transplant patients discharge training’.
Psychological and social support
Why might you want to talk to a clinical psychologist?
Having a kidney transplant or donating a kidney can bring many different feelings. Many people find that having a kidney transplant is a positive experience. However, it is also very normal to experience a wide range of emotions and people might find that they feel worried, fearful, angry, guilty or low in mood. People can find that their feelings change at different stages of transplant. For example, some people may find deciding whether to go ahead with transplant or kidney donation difficult, whereas others may find it hard to manage with things afterwards.
People find different ways to manage. Sometimes this is with the support for others, for example, family, friends and staff in the renal team. There is also a Renal Clinical Psychology Service. Their role is to provide support to people having a transplant and to people donating a kidney at all stages of their care.
Who is the service for?
This service is open to all patients in the Leeds Renal Service. We see people before and after transplant. We also see people who are donating or are considering donating a kidney.
How could a clinical psychologist help?
Psychologists can help people in a variety of ways. Rather than prescribing medicines, clinical psychologists are trained to help people talk through their problems. The person you see will have an understanding of the psychological and emotional effects that transplant and kidney donation can have. Sometimes talking through problems can help people to find other ways of managing their difficulties. You will not have to talk about anything that you don’t want to.
What might you want to talk about with a clinical psychologist?
The things people want to talk about are different for each person and the psychologist will discuss this with you when you meet. Some examples of things that psychologists can help with include:
- Deciding whether to go ahead with transplant or kidney donation
- Coping with being on the kidney transplant waiting list
- Making sense of thoughts and feelings
- Developing ways to cope with difficult feelings
- Developing solutions to practical, personal or relationship difficulties
- Effectively communicating with others, including friends, family, colleagues and professionals about transplant or kidney donation
What happens to the information you share with us?
Information that you share with the psychologist is kept confidential and notes we write in meetings will be kept separate from your medical notes. Psychologists have a responsibility to tell somebody if they are worried that you or somebody else is at risk of getting hurt. We would always try to discuss this with you first. Your psychologist will talk more about confidentiality with you at your first appointment.
How often will you see the psychologist?
Some people see the psychologist only once or twice, other people may see them once a week or once a fortnight for a few weeks or months. You and the psychologist will discuss and agree together how often seems best for you to meet.
Who will you see?
The person you will see will usually be a qualified Clinical Psychologist who specialises in working with people with kidney problems. You may be asked if you are willing to see a Psychologist in Clinical Training. This Psychologist would be supervised by a qualified Clinical Psychologist. Our clinic is at Fielding House, St James’sUniversityHospital.
What should you do if you would like this kind of help?
If you feel that you might benefit from talking to a psychologist, please tell one of the doctors or nurses in the renal team and they will be able to discuss the referral with you. There might be a wait before you can be seen (the doctor or nurse referring you will be able to find out more about this, or you can phone our department).
The psychologists who work in the renal team are:
Dr Janette Moran and Dr Chloe Miller
Department of Clinical & Health Psychology
Fielding House
St James’s University Hospital
Beckett Street
Leeds
LS9 7TF
Renal social workers
The renal social workers are based at St. James’s University Hospital. They require patients to self-refer if they would like to speak to a social worker. They can be contacted on 0113 2066824.
Writing to your kidney donor’s family
Most donor families really appreciate receiving a letter of thanks from transplant recipients. Please read the leaflet we have developed to guide you on what to include in your letter: ‘Writing to your kidney donor’s family‘.
Here are some sample letters which have been written in the past by recipients:
If you have any further questions please contact your transplant co-ordinators or ask to speak to one of them when you are next in transplant clinic, the co-ordinators will be happy to facilitate sending your correspondence to your donor family.
Being a living donor
The best treatment option for somebody on the kidney transplant waiting list is a kidney transplant from a living donor. If a friend or relative would like to be considered as a potential donor then we ask them to contact their live donor team initially to discuss this. Recipients are unable to telephone on their behalf.