This information has been written for patients with kidney disease and diabetes who are considering receiving a combined kidney and pancreas transplant at Addenbrooke’s Hospital.
A transplant brings many benefits, the main ones being:
- freedom from diet restrictions
- not needing to give yourself insulin injections
- slowing down or stopping the damage that diabetes causes
- freedom from dialysis
- patients who have a combined pancreas and kidney transplant are likely to live longer than those who have a deceased donor’s kidney without the pancreas or those who stay on dialysis
A successful transplant is a very good treatment and can improve your quality of life and your life expectancy. Nevertheless, transplantation is not a perfect treatment. Patients must undergo a large operation and the transplant will not last forever. It is important to remember that transplantation is only one of the treatment options for patients with diabetes and kidney disease, and that not everyone is suitable for a combined transplant.
Diabetes damages your kidneys, your eyes, your arteries and your nerves. Pancreas transplantation is also potentially dangerous, and therefore you will be looked after carefully to minimise its risks. A successful combined transplant would reduce the damage which diabetes causes so your chances of being alive in 10 years from now are better than if you had a kidney on its own, and much better than being on dialysis. Occasionally, patients may die from complications after combined pancreas and kidney transplantation, just as they may die after kidney transplant alone, or on dialysis, but it is uncommon (around two in 100 in the first year).
The pancreas is an organ in the abdomen which lies behind the stomach. It makes digestive juices which enter the gut and helps digest the food we eat. It also makes hormones, including insulin. Insulin is made in small clusters of cells within the pancreas called 'islets'. When these cells are damaged they don’t make insulin, and it is the damage to these cells which results in diabetes. When we transplant a pancreas it provides a new source of insulin, and patients no longer need to inject insulin.
Results of pancreas transplantation are good, with more than 90 in 100 working after a year and with the pancreas and kidney lasting an average of 15 years. Because of its success rate, a combined pancreas and kidney transplant is the recommended treatment for patients with diabetes and kidney failure who are fit enough.
Before the transplant operation
Being assessed for a transplant
To be placed on the waiting list, you must first be assessed to find out whether transplantation is the right treatment option for you. Your kidney doctor will refer you to the transplant team. You will then be invited to an assessment clinic at Addenbrooke’s Hospital where you will meet one of our pancreas transplant doctors and a transplant specialist nurse.
During the appointment, the doctor will review your medical history and any recent tests. You will be examined by the doctor and have your feet checked. You will be asked to go to x-ray, have an ECG and some blood tests. When you come to the clinic it is very helpful to bring the following:
- a list of your current medicines
- a list of current and past medical conditions you may have including any operations you have had and their dates
- names of other doctors who are responsible for treating you
- a partner, relative or close friend to help you remember all the information
To minimise the risk of complications during and after the operation it is important that you try to maintain a healthy lifestyle. This may include making changes such as reducing how much alcohol you drink, losing weight and improving your level of fitness. If you are smoking, you will not be able to have a combined kidney and pancreas until you have stopped.
After all the necessary investigations have been completed, the transplant team will advise you if you are fit enough for a combined pancreas and kidney transplant and whether it would be the right treatment for you. This may require a second clinic visit.
Consenting to transplantation
Before you can become active on the transplant list you must have read the information that we give you and sign a consent form to show that you understand what a transplant involves and that you agree to have one. The consent form outlines the potential risks and benefits of combined kidney and pancreas transplantation and should be read carefully before signing. Your transplant specialist nurse can discuss the consent form with you and will answer any questions you may have. By signing our consent form you are also agreeing to have your information held on the national transplant database with NHS Blood and Transplant (NHSBT). This is required in order to match a donor for you.
Your case will be discussed by the transplant team at their weekly meeting in Cambridge and, if they are happy, you will become active on the list. Your transplant coordinator will call and let you know once you have been activated.
What to expect whilst you are on the transplant waiting list
The waiting time for a combined transplant is about a year. Some patients are fortunate enough to get a transplant within the first few months on the list, others may wait much longer. Whilst you are waiting it is vital that you continue to lead as healthy a lifestyle as possible. The transplant team will see you every six to eight months in the assessment clinic to make sure that you remain fit enough to have the transplant operation. You must attend these appointments in order to remain on the transplant list.
Receiving a transplant from a deceased donor could happen at any time, day or night; this means you should ensure that you are always contactable by phone whilst you are active on the list. Let us know of any changes to your contact details.
Once you have been placed on the list, you will remain active unless otherwise informed. It is extremely important that you let us know if you become unwell. We may need to temporarily suspend you from the list until you are well. If you receive a blood transfusion, we need to check further blood samples at two weeks and four weeks following the transfusion, so please inform us. You can still go on holiday, but discuss with the transplant nurses where and when you are going so that we can decide whether or not to suspend you from the list while you are away.
When a kidney and pancreas are donated, the blood group and tissue type of the donor are checked. These are then matched to patients on the national waiting list. Priority is given for those waiting the longest, those who are very difficult to find a match for, and those who are on dialysis. You could receive the transplant from anywhere in the UK. The doctors and surgeons here review the donor details and discuss each transplant offer carefully to check it is suitable for you.
Getting the call to come in for transplant
When we have found a suitable transplant for you, you will receive a phone call from one of the transplant coordinators at Addenbrooke’s Hospital. They will ask you to confirm your details and ask if you are well. You will be asked a few questions and then instructed on what to do next. They will tell you if you can still eat and drink, when to leave the house, and to come to ward G5. Drive safely. If you don’t have anyone to bring you, the nurses will organise a car to bring you. This can take up to an hour to organise. When you start on the waiting list it is worth thinking about what you want to bring into hospital with you, and make a list. Try not to bring in valuables or too much personal property, as space is limited.
Essential things you should bring into hospital for your transplant:
- all your medications
- peritoneal dialysis (PD) fluid for exchanges if you are on PD
- a wash bag
- slippers or trainers
- some comfortable clothes for when you can get up and about; we’d recommend joggers and t-shirts
- mobile phone for contact with family members
The transplant operation
Getting ready for your transplant
- When you arrive on the ward you will have a covid test before we can proceed.
- You will have some blood tests and have a cannula inserted into a vein on your hand.
- We will confirm your medical history and medications and you will be examined; the ward nurses will measure your blood pressure, temperature, heart rate and weight.
- You will need to answer many questions which will help us care for you whilst you are in hospital.
- You will have an ECG and routine swabs will be taken.
- You will be told when to stop eating and drinking.
- You may be put on a drip, and you will be given an enema to ensure your bowels are empty to make the surgery easier.
- You can then have a shower and get changed for theatre.
One of the surgical team will visit you and check you are well enough to have the operation and will go through the consent form with you again. They can discuss any issues with you about the donor at this point. An anaesthetist will check you are fit enough for the operation.
Waiting for the operation
You will be advised how long it will be before you are taken to theatre for your transplant. There are usually many delays, and you may have to wait for several hours until we know for definite if the kidney and pancreas are suitable to use. You will be kept updated during this time. Sometimes, when we look at the pancreas, we decide that it is not suitable and the operation will then be cancelled. If this happens, we will discuss the reasons why before you are sent home.
The transplant operation
The pancreas is transplanted at the same time as the kidney, and both come from the same donor. It is a more complicated procedure than a kidney transplant on its own and takes much longer to perform. You will be given a general anaesthetic for the procedure.
A team of transplant surgeons and nurses will prepare the new organs and carry out the operation. The operation takes six to eight hours, although you will be away from the ward for much longer. Occasionally the surgery may take longer in the event of unexpected findings.
The operation is carried out through a long cut down the middle of your abdomen. It involves connecting the blood supply of the pancreas to the blood vessels that take blood to and from the right leg. In addition to connecting up the blood vessels, another join has to be made into your bowel to drain digestive juices that the pancreas produces. We do not remove your own pancreas. The kidney is then transplanted on the left side and is connected to the vessels going to and from the left leg. The urine tube (ureter) that will drain urine from the kidney will be connected to your bladder. We leave a plastic tube (stent) in the bladder to help the join heal; this gets removed about six weeks after the operation on a clinic visit day. Your appendix will be removed during the operation. If you have gallstones, we will aim to remove your gallbladder during the operation. The skin wound will be closed with small metal staples, dissolvable stitches or glue.
After the operation
After the operation you will usually return to the transplant high dependency unit (HDU) for a day or two. The nurses will make sure that you are comfortable and will monitor the transplants to make sure they are working well.
When you wake up, you will notice that you have a number of different plastic tubes in your body. A tube in your neck monitors fluid volumes and can be used for some dialysis if needed. Plastic drains in your abdomen help drain away any blood and fluid from the operation site and are usually removed after a day or so. A tube (catheter) is placed in the bladder to allow us to monitor urine production, and needs to remain there for at least five days while the joins are healing. Eating and drinking is withheld for a short time after the operation, so a feeding tube is placed in your tummy at the time of transplant. It is used for feeding you to maintain a good level of nutrition to help a faster recovery. This will stay in following discharge and be removed during a clinic visit after three months.
On the first day after your operation you will walk out to your chair for a few hours and you will be taught how to carry out deep breathing exercises. You will be encouraged to walk around the ward as soon as possible. This will help speed up your recovery and reduce your chances of getting a blood clot in the leg or a chest infection.
The normal stay following a kidney and pancreas transplant is two to three weeks but could be longer. Although you will be able to carry out daily activities when you get home, we advise you not to do anything strenuous for about six weeks and to allow a few months until you really get back to normal active work.
Complications after the operation
Bleeding: about a third of patients need to return to theatre for a second operation to stop bleeding (30 in 100 transplants). This is because we actively thin the blood to try and stop the pancreas clotting.
Blood clot: clotting of the blood supply to the pancreas in the early days may result in its removal (five in 100).
Diabetes: recurrent autoimmune diabetes causing you to restart insulin occurs rarely, and usually after a few years (two to three in 100).
Death: the assessment process tries to identify any potential problems, and sort them out before the transplant, so the risk of death after a pancreas transplant is small (two in 100). You will be told if your risk is higher than this.
Deep vein thrombosis (DVT): To prevent a thrombosis (leg clot) happening you will be given injections of a blood thinning drug whilst you are in hospital. You will be mobilised early to encourage the blood flow in your legs.
Pancreatitis: inflammation of the pancreas is common after transplant, and usually settles after a few days.
Urine leak: occasionally, a urine leak will occur where the donor ureter joins your bladder. This requires a return to theatre for an operation to have the leak repaired.
Other problems: some patients are predisposed to having problems with the blood supply to the nerves, and rarely (one in 100) patients have developed paralysis of the legs after the operation. Other complications may also occur which can result in a long stay in hospital or prolonged or permanent disability.
Medications following transplant
Following your transplant, you will need to take drugs to stop your body rejecting your new kidney and pancreas. Your body recognises that the transplants are foreign to you, and reacts against them as if it were an infection and tries to destroy them.
You need to take drugs that suppress your immune system to stop rejection happening. These drugs are called immunosuppressants, or anti-rejection drugs. Because your body can reject the pancreas or kidney at any time after the transplant the drugs must be taken every day. Immunosuppressive drugs are given at a higher dose within the first three months of your transplant, after which your doctors will usually be able to reduce the dose a bit, but they will never be stopped.
You should not need to take insulin again, or any of the drugs you were given specifically for being on dialysis.
The immunosuppression will make you more likely to develop infections. If you know family or friends who have a serious infection it is a good idea if you avoid visiting them while they are unwell.
The immunosuppression will make you more susceptible to some cancers than the general population. In particular you will be more prone to developing skin cancers. For this reason we encourage you to protect yourself from the sun by using powerful sunscreens and avoiding direct exposure to the sun. There is a one to two in 100 chance of getting a cancer of the lymph glands (lymphoma), some of which can be treated successfully, but occasionally may progress and result in death. Female patients are at risk of cervical cancer, so should have regular cervical smears, and male patients should regularly self-examine for potential testicular lumps.
Although these risks of infection and cancer sound worrying, you are much more likely to be alive if you have a transplant than if you stay on dialysis.
Problems associated with organ transplantation
The pancreas is likely to work immediately. Roughly half of all kidney transplants will not work straight away; this is called delayed function. If this happens you may need haemodialysis during this time whilst we wait for the kidney to start working, which usually takes a week or so.
If your kidney takes more than a few days to start working properly, or temporarily stops, your doctors may take a tissue sample (a biopsy) of the new kidney to see if you have rejection.
Rejection does not mean that you will lose the pancreas or the kidney, but it may require more time spent in hospital. Occasionally, we will need to do an operation to take a biopsy of the pancreas to tell whether or not there is rejection.
Once you are home, complications may be detected on one of your regular blood tests, so it is critical that you attend your clinic appointments to allow any problems to be identified.
A transplant operation can put a lot of stress on you and your family. It is very common for patients or relatives to have anxieties. There are counselling services to help you adjust to life at home. Please ask your transplant team for more information about these services.
Other information and long term care
Addenbrooke’s Hospital outpatient clinics
Following your discharge from hospital, the transplant team will ask you to attend regular transplant clinics to monitor you for possible complications such as rejection or infection. We would expect you to attend clinic twice a week in the early days, then weekly for a while, getting less often until the maximum of every three months. In the long term, you can be seen at your own centre once the doctors are happy with your progress.
If you need hospital transport, please be aware this is likely to only be provided for the first three months. This will be from your own area. After this you will need to arrange your own transport to and from the outpatient department.
It is important for you to recognise that caring for your kidney and pancreas transplant is the best way of ensuring its success and keeping you free from dialysis and further diabetes complications.
There is an advice and support service if you need help or have any queries with the following:
- benefit information
- housing information
- local authority information
- charities and grants
- help with benefit applications, appeals and tribunal hearings
- patient advocacy
Please call our renal social care practitioner on 01223 400186 to discuss any of the above issues that you may have and to make an appointment.
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Cambridge University Hospitals
NHS Foundation Trust
Hills Road, Cambridge
Telephone +44 (0)1223 245151