This page explains about the kidney transplant operation and what to expect when you come to Great Ormond Street Hospital (GOSH) for the operation.
Pre-op assessment for living donor transplants
If you are having a living donor transplant, the operation will have been arranged in advance. The operation usually happens on a Tuesday, but can be arranged for other weekdays depending on when the surgeon and operating theatre is available. The week before the operation, you and your parents will need to come into GOSH for a final check up and blood test.
At this appointment, you will meet the team again and can ask any questions about the operation and aftercare. We will ask your parents (if you are aged under 16 years) to sign a consent form giving permission for the operation and you will have the opportunity to sign as well.
We ask all girls over the age of 12 whether there is any chance they might be pregnant. This is protect babies in the womb from any damage during surgery.
If you are on the waiting list for a non-living donor kidney, NHS Blood and Transplant (NHSBT) will call the team at GOSH when a kidney becomes available. We will then call you and your parents to come to GOSH as quickly as possible. As soon as you arrive at the hospital, the doctors and nurses will carry out a final check up and blood test. The blood test results can take at least four hours to come through, so you may not know whether the operation is going to happen for a while.
All patients having a kidney transplant need to be fit for the operation. We cannot operate if you have an infection or illness, such as a high temperature, cough or cold.
We know that cancelling the operation is disappointing, but it is in your best interest, as you will be taking strong medicines to ‘damp down’ your immune system afterwards, which mean minor illnesses can be harder to fight. You will normally have the first few doses of these medicines just before the operation so that your body is ready to accept the new kidney.
You will need to be ‘fasted’ or ‘nil by mouth’ for the operation – this means that you cannot eat or drink anything for at least six hours before the operation. We know that fasting is difficult, but it is essential for your safety.
If you and your parents have not signed a consent form before, the surgeon will meet you to ask you to sign it before you go to the operating theatre. If the form was completed at your preop assessment, the surgeon will check that you and your parents still give permission for the operation to go ahead.
A member of staff will take you to the operating theatre on a trolley and into the anaesthetic room. The operation will be carried out while you are under a general anaesthetic – you might be given this as a gas to breathe or as an injection.
The surgeon will make an incision (cut) in your abdomen near to your hip bone and insert the new kidney. They will next connect the blood vessels from the new kidney so that it is supplied with blood. The ureter (tube that drains urine from the kidney) will also be connected. Your new kidney will have a stent (plastic tube) inserted into it to stop it blocking. This is usually removed about six weeks after the operation.
If you have a dialysis catheter, the surgeon may remove this during the operation or it may be removed during the later operation to remove the stent. At the end of the operation, the surgeon will close the incision and cover it with a dressing.
Back to the ward
You will come back to the renal ward from theatre but some young people need to stay a short time on our intensive care unit. This might be necessary to monitor you closely while you are recovering from the anaesthetic and your body is dealing with the large amount of fluid given into your veins during the operation.
Whether you are on the renal ward or the intensive care unit, you will have a nurse looking after just you for the first day or two, so that we can check you are recovering well.
After the operation, you will usually have the following tubes in place:
- Neckline – This is a catheter (thin plastic tube) inserted into a large vein in your neck. We use this to monitor your blood pressure accurately, give you intravenous (IV) fluids and medicines, and take blood samples regularly.
- Cannula – This will have been inserted in theatre, into a vein on the back of your hand. This is used to give you any extra medicines.
- Arterial line – This is also a cannula, which is inserted into the large artery in your wrist during the operation. We use this to monitor your blood pressure and fluid levels, but can also take blood samples from it.
- ET tube – This is only needed if you go to intensive care after the operation. It is a tube that goes into your mouth and down into your windpipe. It is connected to a ventilator to help you breathe.
- NG tube – This tube is inserted into one nostril and fed down your throat to your stomach. It is put in while you are in theatre. Fluid can be taken away from your stomach through this tube, which will make you feel less sick after the operation.
- Bladder catheter – This collects all the urine that your new kidney is making and also means that you do not have to get out of bed to go to the toilet.
- Wound drain – This is a small tube leading from the operation site, which collects any fluid that builds up in the area. Getting rid of this fluid will reduce any swelling or bruising, which can be uncomfortable.
All of these tubes will be removed, usually by the ward nurses, when you no longer need them.
You will have a monitor by your bed, which records your heart rate and oxygen levels in your blood. We will also measure your blood pressure regularly and the amount of urine produced will be collected by the bladder catheter. Regular blood tests, using samples taken from the neckline or arterial line, will also be needed.
All of these results show us how well your new kidney is working so are really important. Monitoring happens during the day and night for the first few days. We know that you will want to sleep a lot, so we will do our best not to disturb you too much.
We are monitoring for a few specific things during these first few days. We hope that none of these complications affect you, but we want you to know about them in case they do. Knowing about complications and how they are treated should make them less worrying for you and your parents.
- Fluid levels and blood pressure – Your new kidney needs plenty of fluid to keep the pressure of blood travelling to it at the right level. We will monitor your blood pressure and the amount of urine produced every hour for the first few days. We will also give you lots of fluids into the neckline or cannula immediately after the operation. If your kidney is not producing enough urine, we may give you medicine to increase it.
Very occasionally, you may not be able to get rid of as much fluid as needed, so you become ‘fluid overloaded’. The excess fluid can collect in your lungs, making it difficult to breathe. If this happens, you might need to go to our intensive care unit until it clears.
- Clotting – If the blood is not flowing through your new kidney well, clots can develop which may stop the kidney working permanently. You will have aspirin before and after the operation to stop clots forming. Occasionally, this could mean extra oozing from your operation site, which may need to be checked in the operating theatre. However, the benefit of taking aspirin is greater than the risk of this happening.
- Infection – This can be a problem early after the operation. Infection can happen in the lines, such as your neckline or cannula. It can develop in your operation site, but this is very unusual. Other infections that can develop include urinary tract infections (UTI) or chest infections such as pneumonia. Our regular monitoring includes checks for signs of infection so that we can recognise and treat them quickly.
Although your new kidney was screened carefully before it was given to you, there is a small chance that it could have had an infection, which is then passed to you. Donated kidneys are kept in fluid while they are being transported to you, and this fluid may contain bacteria. We check the fluid for bacteria and give you antibiotics until the test gives a negative result.
- Kidney function – Your new kidney may not start to work straightaway after the operation and sometimes you might need to have dialysis to remove excess fluid or waste products from your blood. Equally, your new kidney may produce large amounts of urine but this usually settles down in time. You will have an ultrasound scan of your new kidney in the first few days after the operation and you may need other scans, such as MAG3, DMSA or DTPA if we have any worries.
- High blood pressure – This is also called hypertension, and it can happen after the operation even if it wasn’t a problem before. We will monitor this closely and discuss any treatments or medicines with you and your parents.
- Diabetes Mellitus – Some people develop diabetes after the operation, which means that their pancreas cannot produce enough insulin or the insulin doesn’t work well. Insulin is a chemical in the body which breaks down sugars into energy. Diabetes can be a side effect of the medicines you’re taking, so we can try changing them to stop it. If you do develop diabetes, this will probably mean that you need to have insulin injections. We will check regularly to see if you have glucose in your urine or high blood glucose levels.
- Fits or seizures – These are a very rare complication of transplant, and are more likely to happen if you had seizures before the operation, although they can happen in anyone. There are many reasons why seizures happen, so we carry out lots of checks to discover what is causing the seizures and give medicines to treat them. It is very rare to have to carry on taking these medicines long term.
We will give you regular pain relief into a vein so that you are comfortable. This might make you a bit drowsy but you will probably feel sleepy from the anaesthetic too. The nurses will set up a pain relief infusion, called ‘patient controlled analgesia’ or ‘nurse controlled analgesia’.
This machine lets you have a dose of pain relief when you need it – either your nurse (nurse controlled analgesia or NCA) pushes the button or you do it yourself (patient controlled analgesia or PCA). The machine is programmed so that you cannot have too much pain relief.
We want you to be comfortable, so if you are in pain or need more pain relief, please tell your nurse.
You usually start to take the medicines before the operation and carry on afterwards. More information about the specific medicines you’ll be taking is in our Medicines after kidney transplant information sheet. These medicines are needed to stop your immune system attacking your new kidney but they also stop you fighting off infections like coughs and colds.
Visitors should stay away if they aren’t well and everyone, including your parents and members of staff, should wash their hands before visiting you.
Up and about
While you will be spending quite a lot of time in bed after the operation, we will encourage you to move around and get up when you feel able. Moving around will help you recover more quickly. There is a television by your bed, but you might want to bring in some books, magazines, DVDs or schoolwork to stop you getting bored.
Eating and drinking
For the first few days after the operation, you will have a fluid drip so it doesn’t matter if you do not feel like eating or drinking straightaway. When you are ready, you will start with small sips of water or squash, and if you feel alright, you can start to eat, usually on the second day after the operation.
If you had a special feed before the operation, we will see how you manage to eat normal food afterwards and only put you back on the special feed if there are problems. Our renal dietitian will visit you to discuss food and diet after the operation and is available to answer any questions you or your parents might have.
You will probably spend a little over a week on the renal ward recovering from the operation and starting to get back to normal. Once you are ready to leave, you will be discharged to the patient hotel but you will still need close monitoring. You will be under the care of one of the kidney specialists although you will see different doctors and nurses in clinic. You may be transferred to a different kidney specialist from the one you saw before the operation.
For the first four weeks or so after the operation, you will need to come back to GOSH frequently. Each appointment will involve measuring your height, weight and blood pressure and taking urine and blood samples for testing. Sometimes, you might need to have an x-ray or other scan.
Depending on the results of these tests and scans, your check ups may need to happen more often. It is very important that you come to every appointment, as the monitoring tests we carry out can show early signs of problems, which we can then treat quicker. More information about the longer term problems we are monitoring is in the next section.
Gradually over the next few weeks and months, depending on your test results, check ups will not need to happen so often so you can go home. Appointments can continue to happen at GOSH or we may ‘share care’ with your local hospital if you live a long way away.
As with the immediate complications, we hope that none of these affect you, but we want you to know about them in case they do.
This is the most common problem that can affect your new kidney. You are taking medicines to damp down your immune system so it doesn’t attack your new kidney as ‘foreign’. Unfortunately, your kidney can be attacked or ‘rejected’ even if you take your medicine as you should, so you need to know the signs of rejection so you can tell us immediately. They are:
- raised temperature
- pain or tenderness around the kidney
- blood in the urine
- reduced amount of urine produced
- generally feeling tired or unwell
These signs can also point to other illnesses, but to be sure, you need to contact us immediately.
Rejection can be acute (sudden), often with the above symptoms but not always. We will bring you in to GOSH for testing and treatment if we confirm your kidney is being rejected. You may need a scan, such as an ultrasound or DTPA/MAG3 scan, and also a kidney biopsy. If the results confirm acute rejection, you may need to have a course of high-dose steroids, either by mouth as tablets or liquid or intravenously. The steroids might stop the rejection but if not, you might need to have extra medicines.
Transplanted kidneys can also ‘wear out’ and this is described as chronic rejection, although your body isn’t actually rejecting the kidney. Sometimes we can slow down the wearing out process by changing your medicines or giving you extra ones. If your kidney stops working altogether, you may need to have dialysis for some time before getting a new kidney from a relative or going on the waiting list.
After your transplant, we hope to see the levels of creatinine in your blood slowly come down to an acceptable level, but this varies from person to person. Creatinine is produced in your muscles and is only removed from your body by the kidneys, so it is a good way of telling if your kidney is working well or not. Sometimes, your creatinine level can fall but if it starts to rise again, this can show there is a problem with your kidney function. If it rises, you will need to come back to GOSH for blood and urine tests, scans and a biopsy to find out why it has happened. Once we know what caused your creatinine level to rise, we can treat it, often successfully.
Narrowing of the renal artery
This is also called ‘transplant renal artery stenosis’ and is a rare complication of kidney transplant. If the artery narrows, the amount of blood flowing to the kidney is reduced in amount and the flow is at a lower pressure. It can be treated by passing a catheter into the artery and widening it with a small balloon and/or inserting a wire mesh cage (stent), which is usually successful. The ureter (tube leading from the kidney to the bladder) can also become narrowed, which may need to be treated in an operation.
Other structural problems
Some people have problems with their urinary system, for instance, bladder emptying problems which can lead to urinary tract infections and in turn kidney damage. We try to sort these out before the transplant operation but sometimes we will ask you to have bladder studies (urodynamics) to check for any changes.
Some diseases that lead to kidney damage can come back even after a transplant. These can be difficult to treat and sometimes you might need to have ‘plasma exchange’ (a way of cleaning the blood) and different or stronger medicines. If the reason you needed a transplant was one of these diseases, we will have discussed this with you and your parents as part of the assessment process.
Donated kidneys are checked for certain infections before they are transplanted, for instance, HIV, cytomegalovirus (CMV) or glandular fever (EBV). If a kidney is positive for HIV, it would not be transplanted, but the new kidney may contain CMV or EBV viruses.
- CMV is a common virus that many people have without knowing it. After your operation, we will check you every week to see if you are developing CMV infection. It can be treated with oral or intravenous antiviral medicines for two weeks or longer. If it is not treated, CMV can cause serious illness, with fevers, low blood counts and gut, liver, lung and eye problems.
- The virus that causes glandular fever is called Epstein-Barr Virus or EBV. We check whether you are immune to this virus before transplant, but we do not have any effective medicines to treat it if it develops after the operation. What we do instead is reduce your immunosuppressive medicines so that your body can fight off the infection and this is usually successful. This unfortunately may allow your body to also fight the new kidney but we monitor this very closely. If EBV is not treated, it can cause swollen lymph glands in your neck, armpits and groin, and serious illness.
This stands for ‘posttransplantation lymphoproliferative disease’, which is started by EBV. Most people have immunity to EBV, whether or not they have had glandular fever, so the virus is controlled by the immune system. When the immune system is damped down, this can cause the cells containing the virus to grow in an uncontrolled way to form an early type of cancer. Without treatment, PTLD can spread and lead to death. If we suspect that you have PTLD, the first thing we will do is reduce your immunosuppressive medications.
Immunosuppressant medicines not only reduce the risk of your body rejecting your new kidney, they also lessen your ability to fight off infection and other abnormal cell development. There is a greater chance of developing cancer when you are taking immunosuppressant medicine for a long time, particularly skin cancer. We advise you to cover up in the sun and use high factor sun cream. More information about skin protection follows later in this booklet. Other cancers, particularly those affecting your lymph nodes, are more common so we will check for these when you have your follow up appointments.
As long as your kidney is working properly, you are unlikely to have any problems with your teeth and mouth but you still need to have regular check ups every six months with your dentist. There are some problems that tend to happen in people who have had a kidney transplant, although these are mainly caused by immunosuppressant medicines rather than the transplant itself.
Gum overgrowth (gingival hypertrophy) is a common problem when taking ciclosporin but can also happen with tacrolimus. If gum overgrowth develops, it can be treated with intensive cleaning at the dentist, a spray or gel used twice a day or a small operation.
Dental infections can become serious because the infection can travel from the tooth or gum to the entire body, including your new kidney. You need to follow your dentist’s instructions exactly and keep your teeth and mouth extremely clean to reduce the risk of these happening. If your teeth or mouth are sore, you should visit your dentist as soon as possible.
Getting back to normal
As soon as your new kidney starts working, you will probably start to feel much better. If you were on restricted fluids or a special diet before the operation, you may not need to continue afterwards.
You are likely to have much more energy than before the operation, but you may not be able to do everything straightaway. Some activities could cause problems for your kidney so should be avoided but generally you should be able to do most things you want.
You probably won’t need to keep to the special diet you were on previously, but we do encourage you to eat a healthy balanced diet. Putting on weight can be a problem after transplant, partly due to the steroids increasing your appetite.
You might also want to eat all the foods that you couldn’t before the transplant, which can also lead to weight gain. Some people still have a poor appetite after transplant so need to carry on with their special diet, sometimes using a feeding tube for a while. Please talk to our dietitian about food if you have any questions.
You may have been on restricted fluids before your transplant, but after the operation it will be important to drink plenty each day to stop you becoming dehydrated. We will tell you how much fluid to drink each day, which will change sometimes depending on your test results.
The medicines you’re taking to stop your body rejecting the kidney will mean that you are more likely to pick up infections. These are the everyday infections that everyone gets at some point, but you might find that they last longer and you feel worse.
A common infection that people who have had a transplant develop is cold sores. These are caused by the herpes virus and can be uncomfortable and look horrible. There are medicines available from your chemist or your family doctor (GP) which can help though.
Glandular fever can also be a problem, so please let us know if you think you have it. Chicken pox or shingles can be serious for people
taking immunosuppressant medicines, so we will check your immunity and give you a vaccination before transplant if you haven’t had it.
When we are planning your transplant, an important part is to complete your immunisations. After the operation, you will be able to have most of the usual immunisations but there are some you shouldn’t have:
- MMR (Measles Mumps and Rubella)
- BCG (Tuberculosis)
- oral polio
- yellow fever
- oral typhoid
Some of these are only needed if you go abroad, so please check with us before you plan your holiday and organise any jabs.
Puberty and growing up
Renal failure delays puberty so you may find that after the operation you start to notice changes happening to your body. If you have any questions or concerns, please talk to a member of the team. You can ask to speak to someone of the same gender if that will make you feel more comfortable.
We tend to advise not leaving the UK for at least six months after your operation. We would prefer you to wait until your health is improving and you are in a routine with your medicines. Wherever you go on holiday, even in the UK, we suggest you take a covering letter with you.
This should include your medical history, requirements for drinking fluids and a list of medicines. When you travel, make sure you carry enough medicine to cover your holiday plus a few days extra and carry it in your hand luggage.
Your skin will be more likely to get sunburnt after transplant. This is a side effect of the medicines
you are taking. Always protect your skin from direct sunlight and use a high protection sun cream (SPF30 or higher). Cover up with a long-sleeved top and a hat and stay in the shade during the middle of the day when the sun is strongest.
School and college
You should be well enough to go back to school or college about six weeks after the operation. Please let your teacher or tutor know about the operation. We are happy to speak to people at school or college if you want us to or if they have any questions.
Games and sports
As with school and college, you should be well enough to participate in most games and sports after you’ve recovered. Please talk to the team before you start doing sports so we can check that it won’t damage your kidney.
We recommend, however, that you avoid sports where you could get hit in the abdomen, such as rugby or judo. We can supply kidney guards but they only offer limited protection. If you are really keen on a particular sport, please talk to us about it so we can see what we can do to help.
Cigarettes and alcohol
We certainly do not advise smoking at any point especially after a transplant. The chemicals contained in cigarettes have various effects, many of which could put your new kidney at risk.
While alcohol is unlikely to react with the medicines you’re taking, we suggest that you only drink moderate amounts of alcohol after transplant. The main job of the kidneys is to filter out poisons, including alcohol, so drinking to excess puts an extra strain on your kidneys.
Body piercing and tattoos
These are generally not advised due to the risk of infection through dirty needles. As you are taking immunosuppressant medicines, you will be less able to fight off infections if they occur. If you feel you do have to have a piercing or tattoo, you should always used licensed premises that are registered with the local health authority.
Sex and contraception
Like any other infection, sexually transmitted infections (STIs) can be harder to fight off when you’re taking immunosuppressant medicines. Always use a barrier method of contraception to reduce the risk. If you want to know more about sex and contraception, please talk to us, especially if you are under 16 years old and sexually active.
If you are a girl, as soon as you start having periods, you can get pregnant if you are sexually active so good contraception is necessary. For the first few months, we advise using barrier methods, such as condoms, rather than the pill. If you want to consider taking the pill, please discuss this with your doctor as some brands can react with your immunosuppressant medicines.
If you are a boy, please discuss contraception with your doctor. Some boys have trouble getting and keeping an erection, even after transplant. There are various options for helping with erectile problems, so please discuss them with your doctor. If you are embarrassed, you can always ask to speak to a male member of the team.
Many adult kidney transplant patients have gone on to have successful pregnancies and children but there are a couple of things to remember. Generally, we advise that you wait a couple of years after transplant before trying to get pregnant. This gives your body time to get used to the new kidney and your medicines.
Some of the medicines you are taking could harm an unborn baby, so your doctor may suggest changing medicines just in case. It is important that any pregnancy should be planned so your medicines can be changed in plenty of time, which is why contraception is so important.
The new kidney has been positioned inside your abdomen so that it won’t get squashed by your baby and natural childbirth should be possible. During pregnancy, you will need to be monitored more frequently than usual, due to the risk of urinary tract infections and high blood pressure, both of which might cause problems with your kidney. If you develop high blood pressure, your baby is likely to be delivered early.
Further education and jobs
There is no reason at all why you shouldn’t go onto college or university if you want and get a fulfilling job. Your kidney transplant is unlikely to restrict your choices, although some jobs where risk of blows to the abdomen, such as professional football, might not be advisable. Please discuss your future plans with our adolescent nurse specialist who has plenty of information and contacts for further help.
Benefits and fare reimbursement
Unless you have other problems, you’re unlikely to get benefits such as Disability Living Allowance (DLA) once you’ve had your transplant. For the first six weeks or so after the operation, we will provide hospital transport to GOSH for your check ups. After six weeks, we are unlikely to be able to provide transport unless you have any other problems. Your parents may be entitled to claim back travel expenses and congestion charge.
Dealing with feelings
It’s easy to feel like chronic illness dominates your life and that of your family too. There will be times when this is everyone’s primary concern, but we encourage you to lead as normal a life as possible. It may feel like transplant is the ultimate goal and that once you’ve had one, you need never worry again.
Unfortunately this is rarely the case, as you will need to take medicines every day, drink enough fluids, have regular check ups and deal with infections promptly. You will probably be taking more medicines
after the transplant than you were before and coming to GOSH more often too.
The first few months after the operation are often the most difficult, while you get used to your new routine and levels of activity. Please talk to us about how you’re coping, if there are things worrying you or day to day life is proving difficult.
Independence and moving on to adult health services
As you grow older, you’re likely to want to become more independent – making your own decisions and taking charge of your own health. Although you understand why you need to take your medicines regularly and drink enough fluids, there are bound to be times when it feels like a ‘burden’.
You can, of course, share this ‘burden’ with your parents, but we are there to help as well. Having trouble keeping on top of your medicine and fluid routine sometimes becomes a problem during adolescence. It is difficult to feel ‘different’ to your friends or coping with unwanted attention due to medicine side effects.
We have a counsellor who can talk to you about these or any other problems you’re facing. Our adolescent nurse specialist can also help, particularly around ‘teenage issues’ and getting ready to move on to adult health services.
We spend a lot of time during this ‘transition’ period, with monthly transplant clinics for young people as well as joint clinics with various adult renal services. For more information about transition, please ask for a copy of our information sheet.
This information does not constitute health or medical advice and will not necessarily reflect treatment at other hospitals. If you have any questions, please ask your doctor. No liability can be taken as a result of using this information.