When a child has a kidney transplant, he or she needs to be prepared both physically and psychologically for both the operation and the ongoing after care.
Our introduction to kidney transplantation covers basic information about the transplant process - here, you will find more detailed information about the transplant operation, post-operative care, follow up and possible side effects and complications.
We hope that none of the complications mentioned here will affect your child but we attempt to describe all possibilities, so that if any of them do occur, they might not seem so worrying. Please remember that advances are being made all the time, both in the management of transplantation as well as drug therapy.
Should any child with a transplant get into difficulties in the future, it is impossible to predict what treatments may be available. We can however safely say that with all the available evidence today, where it can be achieved, a successful transplant is the best possible treatment for irreversible kidney failure.
Please note this information does not replace the face-to-face meetings that you will have with the medical, nursing and psychosocial teams but should act as a reminder of the topics you have discussed with them.
Time for transplant
If your child is having a living donor transplant (see our introduction to kidney transplantation guide for more information), you will have a date for transplant, which is normally on a Tuesday. Your child will be seen the week before the transplant for a final check for compatibility (final cross match), a surgical review and for you to ask the surgeon any more questions before giving permission for the operation by signing a consent form.
Your child will be admitted the day before for final investigations, including blood tests. Members of the family, including the family member donating their kidney, can spend time with the child before the operation. You will have the opportunity to discuss any last minute concerns with the doctors, nurses and play specialist.
If your child is on the on-call list for a deceased donor kidney transplant, then you may receive a call that a kidney has become available for your child at any time. Please make sure all your contact details are up to date and that a member of your family can be contacted at all times.
When you are contacted, you will need to travel to Great Ormond Street Hospital (GOSH) immediately, so you should have a travel plan arranged, remembering that you could be called at any time of day or night. When you are on call, it is still possible to go on holiday but you must discuss this with the team to make sure the right arrangements are in place. If going abroad where not easily possible to return, it may be decided that it is best to temporarily suspend the child or young person from the 'on-call' list.
Once you arrive on the ward, your child will have some blood taken for testing. One of the blood tests is for the final ‘cross match’; this involves checking to see if there would be a reaction between your child’s blood and the donor’s blood. If the result is positive (this means there is a reaction) then the transplant cannot go ahead. If the result is negative (this means there was no reaction) then the transplant can go ahead if all the other final investigations are satisfactory. This process takes at least four hours.
Whether your child is having a living or nonliving donor kidney transplant, he or she has to be fit for theatre on the day of the transplant. We cannot operate on children with infections, including temperature, coughs and colds. We appreciate that not operating would be very distressing, but this is in the best interests of the child as strong medicines to ‘damp down’ the immune system are used for kidney transplantation. These medicines mean that your child will be less able to fight off infection.
On the day of the operation, your child will have to be ‘nil by mouth’. This means they cannot have anything to eat or drink, for at least six hours before going to the operating theatre. We will also give your child some medication, some of which will be ‘anti-rejection’ medicine in order to prepare your child's body for his or her new kidney. You will have met one of the transplant surgeons in our outpatient clinic as part of preparing for transplant. Before the transplant, you can meet the surgeon again and have an opportunity to ask any more questions.
The transplant operation is carried out while your child is under a general anaesthetic and usually takes four to six hours, although it may take longer.
During the operation, the surgeon will connect up the blood vessels of the new kidney with your child’s arteries and veins so that the kidney is supplied with blood. He or she will usually connect the drainage tube (ureter) from the new kidney to your child’s bladder so that urine can drain away. A stent (plastic tube) may be inserted into the ureter to stop any blocking. This will be removed in a short operation under general anaesthetic, usually about six weeks after the transplant. If your child has a dialysis catheter, this may be removed at the time of the transplant or when the stent is removed. At the end of the operation, the surgeon will carefully close the incision and put a small dressing over the wound.
After a transplant, some children (usually younger ones) go to the paediatric intensive care unit (PICU) for a short time to help them tolerate the large amount of fluid given in theatre and until they are breathing comfortably on their own. Others return straight to the renal ward. The team may have decided this before the operation, for instance, if your child is young. Occasionally this decision will be made during the operation, but we will always explain the reasons to you. Whether your child goes to PICU or comes straight back to the renal ward, he or she will have one nurse caring for him or her for the first 24 to 48 hours (until your child is more awake and stable). When your child returns to the ward when possible we aim to nurse them in a cubicle.
When your child comes back from the operating theatre, he or she will usually have the following tubes in place:
Neckline This is a central venous catheter inserted into a large vein in the neck leading to the heart. It is used to measure the blood pressure within the heart, which in turn helps to assess your child’s fluid levels. We use this line to give intravenous fluids and medicines and also to take blood samples, which we will do regularly, at least two hourly at first, to monitor the new kidney.
Cannula Your child will have a cannula inserted, usually into a vein on the back of the hand, to give any medication needed. Extra cannulas might be inserted during the operation.
Arterial line This cannula is usually placed in the large artery in the wrist. It is used to monitor blood pressure and fluid status. Blood samples can also be taken from this line. The line is usually removed within 24 to 48 hours and a pressure bandage will be applied to minimise the risk of bleeding.
E T Tube (endotracheal tube) If your child goes to intensive care he or she will have a tube that goes from the mouth into the trachea (which leads to their lungs). This tube will be connected to a ventilator machine, which will help support their breathing. Staff in intensive care will show you and explain this to you at the time.
NG Tube (nasogastric tube) This is a thin tube that is inserted into the nose and passed down into the stomach. This will normally be done when your child is in theatre. It means that fluid can be drawn (aspirated) from the stomach when needed. After an operation, resting the stomach for a while reduces sickness
Bladder catheter This collects all the urine that the new kidney is making, which enables us to measure it accurately. It also means that your child will not have to get out of bed to go to the toilet, which may be uncomfortable for a few days. This is normally removed within the first five days after the operation but may be longer if needed.
Wound drain Some children will have a small tube leading from the operation site that collects any extra fluid from that area prevents swelling and reduces bruising. This will be removed once no more fluid is draining, usually during the first five days after the operation.
All of these tubes will be removed on the ward by nursing staff. We will explain the procedure fully to you and your child before we remove them. As soon as we do not need the tubes, we remove them as they can increase the risk of infection.
We will constantly monitor your child on his or her return from the operating theatre. The monitor by the bed records heart rate and oxygen levels, and we will measure his or her blood pressure regularly. The amount of urine passed by your child will be measured with the help of the bladder catheter. Regular blood and urine tests will be taken as they show how well the new kidney is working.
Your child may be drowsy or seem a little confused but, with familiar voices and faces around him or her, will soon settle. We will give your child regular pain relief to keep him or her comfortable but this might cause drowsiness too. We will explain about pain relief before the operation, but we will check your child regularly and increase the pain relief if needed.
Children are normally given a ‘nurse controlled analgesia’ (NCA) or ‘patient controlled analgesia’ (PCA) pump. This is a morphine infusion, which is set to give extra measured doses of morphine safely as required. The extra doses are given by pressing the button on the pump. Either nursing staff or your child will use this button depending on your child’s age and understanding. The infusion CANNOT give your child too much pain relief. More detailed information will be given to you and your child about how this works before you go to theatre.
Please let us know if you think your child is in pain and needs more pain relief. We also have a ‘pain team’ who will visit your child daily to help monitor that they have the right pain relief. We can call them at any time for further advice.
We encourage children to move around in bed and to sit in a chair as soon as they are able. Stories, videos, favourite music and soft toys all help children to relax and recover from an operation. It will not be long before your child is ready for games and the company of others, either by the bedside or in the playroom.
The nurse looking after your child will tell you when he or she can eat and drink again. Children will start with drinks in small quantities at first and if these are well tolerated and there are bowel sounds, they will be allowed to start eating. When a child can start to eat varies but it is usually at least the second day after the transplant. If your child has had a special feed prior to transplant, it is usual to see how well your child will eat without the feed initially. Your dietitian will discuss this with you as each child’s requirements are assessed individually and they will advise about suitable foods and continuation of the feed for a while, if necessary.
We will have already started giving your child antirejection medicines. These lower his or her immune system so it is important that visitors are restricted at first and anyone who feels unwell or has any coughs or colds should not visit at this time. You should wash your hands when entering or leaving the cubicle to further reduce the risk of infection.
Fluid levels and blood pressure
The new kidney needs plenty of fluid to make sure that the pressure of blood travelling to it stays high. We monitor this by measuring blood pressure and the amount of urine produced very accurately. Your child will also be receiving a large amount of fluid back each hour through the neckline or cannula immediately after the operation. If the kidney is not producing enough urine then sometimes we will give medication to try to increase it.
Very occasionally, your child may be unable to get rid of as much fluid as needed, which means that they become ‘fluid overloaded’. The excess fluid can collect in the lungs making breathing difficult. If this happens, your child might need to go to our intensive care unit until the fluids clear. We are aware of this potential complication and this is the reason we monitor your child’s blood pressure and urine output so carefully.
If blood flow through the kidney is sluggish or decreased for any reason, then clots can develop in the kidney, which may mean that the kidney stops working permanently. This is why we give aspirin at the time of transplant and for at least four weeks afterwards. Aspirin stops clotting of the platelets, which are the sticky particles that circulate in the blood. Occasionally, there may be increased oozing as a result of the aspirin and very occasionally, it may be necessary to go back to the operating theatre to investigate blood loss. However, the risks of this are far outweighed by the benefits of reducing the chances of a kidney clotting.
Another complication that may occur early after the operation is infection. This may be due to an infection in one of the lines, such as the neckline or cannula, or a wound infection, although this is very unusual. Other infections include: urinary tract infections (UTI), chest infections such as pneumonia, other bacterial and viral infections including septicaemia (blood poisoning). We constantly monitor your child for any sign of infections so that they are recognised quickly and treated.
The new kidney does not always work straight away. It can take some time to start working again and dialysis may even be necessary until it does start. It is equally possible that the new kidney will produce very large volumes of urine, sometimes up to several litres per hour, but this also settles down with time.
All our patients have a baseline ultrasound scan within the first few days, which shows the blood flow to the new kidney. This scan may be repeated again if we have concerns about the kidney. Some patients will also have nuclear medicine scans (MAG3, DMSA or DTPA), which shows blood flow to the kidney, its function and drainage.
Hypertension (high blood pressure)
Your child may suffer with high blood pressure after having a transplant, even if this was not previously a problem. Again we will monitor this closely and discuss any treatment that is needed with you and your child. Some children will need to take medication to lower their blood pressure.
Some children develop diabetes mellitus post transplant. This means that their pancreas is unable to produce either sufficient or effective insulin. This can be a side effect of the steroids and immunosupressents which we may be able to change. Again we monitor your child closely for any signs of this, by checking regularly to see if there is glucose in their urine or elevated blood sugars.
If your child does develop this type of diabetes, it is likely they will need insulin injections. This treatment would be discussed with you and your child in depth.
A very rare complication that can occur after a transplant is seizures. These are more likely to happen in children who have had seizures previously, but they can happen in anyone as there are many factors after a transplant that make them more likely to develop. These include blood pressure changes, changes in sodium, calcium, magnesium and glucose levels in the blood. We treat the underlying cause of the seizures, giving appropriate medicines, which only very rarely continue after the transplant and cause long-term problems.
Medication after transplant
Immediately after the operation your child will have a variety of medications. They will be given intravenously until your child is able to eat and drink. Medications include the anti-rejection drugs and pain relief. Staff looking after your child will explain which medicines your child is having. After the transplant your child will be on a combination of different medicines. To begin with at least, most children will be taking more medicines, different to the ones taken before transplant, more frequently or in higher doses.
The most important new medications are the ones to stop the new kidney being rejected (immunosuppressants). Your child must take these for as long as the transplant functions, whether it is one year or over 20 years. We currently use a combination of three immunosuppressants: prednisolone, tacrolimus and azathioprine or mycophenolate mofetil (MMF), although occasionally other drugs including intravenous ones are used.
Other medication includes antibiotics to prevent urine or other infections, aspirin, anti-hypertensives to lower blood pressure, medications to prevent stomach irritation, supplements and other medication to correct imbalances in body fluid or chemicals. Some of these will stop in the first six months.
It is vital that your child takes all of his or her medicines at the correct times and in the correct dosages. There is a serious risk of illness or of losing the transplant if the medicines prescribed are not taken as directed. The most common reason for losing a transplanted kidney is not taking the immunosuppressant medicines as prescribed. It is a tragedy if a child loses a kidney for this reason, but unfortunately this happens to at least one child every year at GOSH.
If you and your child have any difficulties with any of the medicines you have been given, please see the team to talk it through or telephone us on the number we give you. We are here to help you.
After the transplant, before you and your child are discharged home, nursing staff will explain all the medicines, dosages and times with you and give you a copy of the patient information leaflet provided by the manufacturer. You or your child will practise organising and taking them while still on the ward to help start a routine.
We will provide you with the initial supply of medication, then you will need to get further prescriptions from your family doctor (GP). Remember to plan ahead and ensure you have enough medication at all times and that you will not run out, especially over weekends and bank holidays.
Immunosuppressants not only decrease your child’s chance to reject the transplanted kidney, they also decrease your child’s ability to fight off infection and other abnormal cells that might develop into cancer cells. There is an increased cancer risk in children on long-term immunosuppression, particularly skin cancer. Your child’s skin should be covered when out in the sun and sunscreen applied to all exposed areas.
Other cancers, particularly lymph node cancers, are more common in patients on immunosuppression. This is why we continue to have check up appointments with your child long after the transplant has taken place.
This is a steroid and the dose will be gradually tapered off over the eight weeks following the transplant, until your child reaches his or her ‘maintenance’ dose. A full list of side effects will be listed in the patient information sheet that comes with the medication, but common side effects of prednisolone include:
- increase in appetite and fluid retention leading to weight gain and/or high blood pressure
- puffy face
- heart burn
- increase in growth of baby hair
- growth problems
- increased risk of infection
- mood changes and behavioural problems
- sleep disturbance (rare)
- changes in menstruation cycle (rare)
- sugar in the urine (early signs of diabetes requiring insulin)
The side effects normally decrease as the drug is reduced. We will give you a card indicating that your child is taking steroids. This is important for him or her to carry at all times, as it may affect any treatment or medicines your child needs, perhaps in an emergency.
Tacrolimus (sometimes called FK506)
This is a strong immunosuppressant, which your child will take twice a day, with 12 hours in between each dose. Tacrolimus works best on an empty stomach, so it should be taken one hour before or two hours after food.
We will need to monitor the blood level of this medicine very carefully to ensure we are giving exactly the right dose. A dosage that is too high or too low can adversely affect how the kidney functions, so we may alter the dose from time to time. A full list of side effects will be listed in the patient information sheet that comes with the medication, but common side effects of tacrolimus include:
- increased risk of infection
- stomach upset
- thinning of hair
- hand tremors
- raised blood pressure
- kidney and liver dysfunction
- need for mineral supplements
- sugar in the urine
Note: Some other medicines including antibiotics can interfere with the action of tacrolimus. If your family doctor (GP) or local paediatrician is not sure, he or she should check with the Transplant Unit at GOSH.
This immunosuppressant has to be taken once a day and we usually find that taking it in the evenings lessens the chance of an upset stomach. Your child’s dose may need to be lowered if his or her white blood cell count is very low. There are very few reported side effects; however they can include:
- increased risk of infection
- liver problems
It may also be responsible for making warts and verrucas worse.
Mycophenolate mofetil (MMF)
Your child may be given this instead of azathioprine. He or she should take it on an empty stomach. We usually suggest that this medicine is taken twice or even three times a day to minimise the chances of an upset stomach.
This medicine tends to be given to try to combat chronic rejection and when the creatinine is unstable or rising. Common side effects include:
- stomach upsets
- liver problems
- increased risk of infection
Many of the side effects mentioned above can be minimised or treated successfully, but we need to know if your child is experiencing any of them. We cannot help if we do not know!
If necessary, your child can take paracetamol to control pain or a high temperature, but should not take any other painkillers, especially ibuprofen or diclofenac, as they can affect kidney function.
Rejection of the new kidney
Rejection is a well-known and frequent complication of having a transplant. It occurs when the body recognises the new kidney as ‘foreign’ and the immune system starts to attack it. We know this can happen, even when the new kidney is a good match, and for this reason, it is vital that your child takes his or her immunosuppressant medicines regularly. It is important to be aware of the possibility of rejection and to take the appropriate steps at the first signs. Many people suffer some level of rejection at some point.
Rejection is usually treatable, especially if caught early. It is, however, the most common cause of kidney transplant failure and why all our transplanted patients are monitored closely right through to transition and adult services. There may be no symptoms of rejection except a higher than baseline plasma creatinine. However symptoms of rejection can include:
- raised temperature
- pain or tenderness around the kidney
- blood in the urine
- reduced urine volume
- general lethargy or feeling unwell
While we realise that these symptoms are common in children and often indicate something routine, if you see any of these signs in your child, please contact the Transplant Unit immediately.
Rejection can be acute (sudden) or chronic (ongoing).
This sometimes can cause pain and fever, but not everyone has symptoms during rejection. The doctors will need to carry out blood and urine tests to see how well the kidney is working. Other tests may include scans (such as ultrasound and DTPA/MAG 3 nuclear medicine scans). To confirm a diagnosis of acute rejection the doctors may need to take a kidney biopsy. More information about kidney biopsy is in another of our leaflets.
If the diagnosis is confirmed, or suspected without a biopsy, your child may need to take a course of high-dose oral or intravenous steroids. This may stop the rejection process but sometimes other medicines might be needed. In most cases, this will stop the rejection, but unfortunately, steroids can have unpleasant side effects (see section on prednisolone).
This term implies that the body is rejecting the kidney whereas it is often more correct to say that the kidney is wearing out. Doctors often refer to this as ‘chronic allograft nephropathy’. It is sometimes possible to slow this process by changing medications such as adding in other immunosuppressant drugs.
For instance, your doctor may reduce your child's tacrolimus dose but add mycophenolate mofetil. If the kidney stops working completely, it may become necessary to start or re-start dialysis and consider the possibility of another transplant.
The overall mortality (death) rate with a kidney transplant is less than those on peritoneal or haemodialysis. Transplanted children have a better outcome than those on dialysis. Dialysis can not do all the work of a functioning kidney.
After a transplant, we hope to see a steady decline in plasma creatinine to below 100 μmol/L, but the level depends on many factors. Creatinine is something that is produced in our body every day at a very constant rate and is removed from the blood only by the kidneys. If the kidneys are working less well, the creatinine level sets itself a little higher in the blood, but does not cause any problems. It is therefore a very useful marker of how well the kidneys are working.
We hope that the creatinine will fall to an acceptable level and then stay at that point. However, sometimes it starts to increase again and then we know that there is a problem with the kidney. Usually, your child will need blood, and urine tests, scans and a biopsy to try to find out the exact cause. For more information about kidney biopsies, please see our leaflet.
The creatinine level may go up due to a clot within the kidney, the medicines that the child is taking, infection, obstruction or rejection, all of which can be treated. If treatment works, then the creatinine may come back down again to its previous level.
Although every effort is made to minimise the risk of transmission of infections by the transplant, as the organ is of human origin, the risk cannot be eliminated entirely. Bacteria can be present in the fluid that preserves the transplant from a deceased donor, so we culture this fluid and give antibiotics until we know that there were no organisms in it, that is, until the culture is negative.
The donor kidney is checked for HIV, hepatitis and CMV. We would not use a kidney that carries HIV or hepatitis, but the kidney might carry cytomegalovirus (CMV) or glandular fever (EBV) viruses (see below). Your child’s blood will have been checked before the transplant for measles, HIV, hepatitis B and C, chicken pox virus, CMV and glandular fever.
All children receive pre-transplant immunisations as per our protocol including vaccines against measles and chicken pox if your child is not immune. If your child has not developed immunity, CMV and EBV can cause problems after the transplant as the medicines we give interfere with the body’s ability to get rid of them.
This is a virus that is present in the community and most people who have it may not know or may only have a ‘flu-like’ illness. Most have contracted it by their late teens or early twenties. Some children may not have been exposed to it before the transplant and it may be acquired from the new kidney or from blood that may be given at the time of surgery.
After the transplant, we screen our children every week to see if they are developing CMV infection and if they do we need to give them oral or intravenous treatment with a valganciclovir (oral) or ganciclovir (intravenous) for two weeks or sometimes longer. This is a very good treatment but if given intravenously, may require insertion of a line first. If we do not use this medicine to treat the CMV, children can become quite unwell with swinging fevers and sometimes low blood counts with liver and lung involvement.
Glandular fever virus
This is called the Epstein Barr Virus (EBV). Again, we check to see if your child is immune before the transplant, but unfortunately we have no effective specific medicine to treat it as yet. If your child contracts EBV, we reduce the immunosuppression that your child is receiving so that his or her body can overcome the infection naturally.
Of course, the risks involved in this are that the body will try to reject the kidney at the same time. We monitor this very closely. However, if we do not get rid of the EBV virus, your child can develop swollen lymph glands and involvement of other parts of the body and can become quite ill. However, usually with the reduction of immunosuppression, the situation improves.
One complication after surgery is bleeding. Staff will monitor for signs of this and it can mean that children have to go back to theatre in order to control the bleeding. A much less common complication is a narrowing of the artery of the transplanted kidney where it joins onto the child’s main artery. This is called a ‘transplant artery stenosis’. We can ask our renal radiologists to try to treat this by passing a catheter through the narrowing and blow up a small balloon around the catheter to stretch the narrowed section. This is usually quite effective. It is also possible to get narrowing in the tube that drains the kidney into the bladder (ureter) and this may need surgery.
Some of our children have structural abnormalities of the urinary tract, in particular of the bladder. If the bladder is not properly drained, they may be prone to urinary tract infection, which can damage the kidneys. We try to sort these problems out before the transplant, but sometimes we may need to repeat the bladder studies (urodynamics) that were done before the transplant to see if there has been any change.
Recurrence of kidney disease
There are some diseases that can come back in the kidney. These include some types of nephrotic syndrome (FSGS) and haemolytic uraemic syndrome (HUS)
and inflammation of the kidneys (glomerulonephritis and lupus). These may be challenging to treat and it may sometimes be necessary to use a treatment called plasma exchange and give stronger medicines. If your child has any of these underlying conditions the possibility of recurrence will be discussed with your prior to transplant.
Post-transplantation lymphoproliferative disease (PTLD)
PTLD is a risk associated with the use of immunosuppressive drugs to prevent rejection of his or her transplant. The Epstein-Barr virus (shortened to EBV) provokes PTLD. The same virus causes glandular fever or infectious mononucleosis. Most adults will have already been infected, whether they have had glandular fever or not. Once infected, the virus is kept in check by your immunity. Whenever your immunity is seriously suppressed, as in transplantation, there is a risk that the cells infected by the virus may grow in an uncontrolled and malignant manner, leading to PTLD.
Without treatment PTLD spreads and can be fatal. PTLD is a serious condition and all treatment options would be discussed with you in great depth.
Kidney transplant patients usually have few dental problems as long as their new kidney is working properly, although your child will need to see the dentist every six months for a check-up and to prevent problems. There are a couple of problems which tend to occur in people who have had kidney transplants, which are due more to the antirejection drugs than to the transplant itself.
Gum overgrowth (gingival hypertrophy)
This is a common problem in people taking ciclosporin, but can also occur with tacrolimus. Perfect dental hygiene will reduce the overgrowth but does not prevent it. If your child’s gums overgrow, it can be treated with intensive cleaning, use of a special spray or gel twice a day and a small operation.
These can be serious because a simple infected tooth or gum can spread to the whole body. It is important to prevent this from happening by recognising the problem early and getting prompt treatment from your dentist.
Good dental hygiene is the key to reducing or preventing these problems. Your child should brush and floss his or her teeth twice a day. Your dentist will show your child how to do this properly. If your child develops pain or a sore area in their mouth, he or she should visit the dentist as soon as possible.
Feeding and diet
A special diet may no longer be necessary and we will be encouraging a healthy balanced diet.
Some children continue to have a poor appetite after their transplant and so need to continue their special feed. Your dietitian can give practical ideas to help expand your child’s range and quantity of food eaten. As their appetite improves, the feeds will be reduced and then stopped. There is also a feeding team at the hospital, which we can refer your child to if it would be of benefit for your family.
Excessive weight gain can be a problem after transplant, partly due to the effect of steroid medicines that can increase appetite, but also possibly due to your child feeling so much better and wanting to eat things that were restricted previously.
Please ask to see your dietitian if you would like any help. Written information is also given in your child’s transplant fact file.
Emotions and feelings
We know that your family life is affected by having a child with kidney failure and that additional stress is involved preparing for and eventually receiving a new kidney. These stresses can affect each member of the family differently and at different times.
It can sometimes be helpful to talk about what particular worries you have in relation to this beforehand and/or to mention whatever concerns you have to a member of the team looking after you at any time. It is part of our role to support families through what we know can be a particularly difficult time. Please do not be afraid to share your concerns with your doctor or nurse.
It is all too easy for families to feel that their family life is dominated by the chronic illness and its treatment, and there will be times when this is unavoidable. Inevitably, a child with a chronic illness will have his or her parent’s attention focused on him or her regularly but it is important that this attention is not always connected to the illness.
All members of the family need to have as normal a family life as possible. This includes brothers and sisters who need to feel that they too have some exclusive time with their parents. We would encourage you to engage in as near normal a life as is possible in the circumstances.
A transplant can sometimes feel like the ultimate goal of your child’s treatment and once that goal is achieved everyone can relax. This, unfortunately, is not the case. Although a kidney transplant brings with it an increase in energy and good health as well as freedom from dialysis, it is not the end of treatment. Frequent monitoring of your child’s overall health as well as kidney function is key to ensuring that the transplanted kidney has as long a life as possible.
Medication has to be taken every day to prevent rejection of the kidney and an adequate daily fluid intake is essential. Your child may be on more medications and coming to hospital more frequently than when he or she was on dialysis or being medically managed for chronic renal failure.
The first few months after a transplant can often be the most difficult, even compared to your child’s previous illness or dialysis. It is important that you discuss any concerns or difficulties you are having with staff.
Although, as parents, you will understand the importance of taking medication and drinking enough fluid, at times this will seem like a terrible burden to your child. This is understandable, and the ‘burden’ has to be shared if it is not to become overwhelming. The sharing can be done by you as parents but there are many members of the hospital team who will be able to offer different kinds of help and expertise. Please feel free to seek help at any time with any problem or difficulty you may be experiencing.
Non-adherence to a treatment regimen can be a particular problem during adolescence and most young people go through a stage when they are less reliable than we would wish with their medicines and fluids. Naturally enough, teenagers only want to be ‘normal’ and being different can be intolerable. This may seem especially difficult immediately after transplant when the effects of medication are obvious, such as an increase in weight and/or acne. These effects do diminish in time as medication is reduced and the new kidney is in less danger of being rejected.
Your son or daughter will need your continued support despite his or her demands to be completely independent. Although it may be tempting at times to let your teenager look after him or herself, this is not always a good idea. Alternatively, doing everything for your would-be self-sufficient teenager is also not recommended. A balance has to be struck and a partnership approach adopted, with your son or daughter gradually taking more and more responsibility with your supervision.
Medical and nursing staff are always ready to listen and talk to you or your child either separately or together. We have a nurse counsellor on the renal team who is used to helping children safely acquire more independence as they move through puberty and adolescence towards adulthood.
It is important that adolescents are properly prepared for the transition from GOSH to an adult hospital so we discuss this with you all as a family at an early stage. Please do not be shocked by this, we understand that this transition can also be a difficult time for you as parents.
The move to independence on your child’s part may be welcome but may also rob you of certain closeness with your child. You may even find yourself missing the role of medication-giver and fluid monitor. These are normal feelings after looking after a dependent child for so long and part of this transition is finding other things to share besides kidney disease and its treatment.
Please be aware that we have an onsite nurse counsellor who can discuss any concerns you have and we know from experience that other families find this very useful.
Once you and your child have left hospital after the transplant, you will need to return to the Transplant Unit regularly for follow-up checks. These checks are initially every day for about four weeks from the date of transplant. You will be offered accommodation in the patient hotel on site. You do not have to pay for this and it means that the daily follow up is much easier.
As follow up becomes less frequent you can return home. However, you should be aware that monitoring may become more frequent if your child's creatinine level rises. Eventually follow up may be shared with your local hospital if you live a long way from London, but initially it will be daily for the first month at GOSH. It is very important that your child attends all his or her follow-up appointments, so that we can discover and treat any problems before they become more serious.
Your child will be under the overall responsibility of one of the consultant paediatric nephrologists. We will tell you who this is, although in clinic, you will see different doctors and nurses who work in the transplant team. The consultant may not be the same consultant that your child was under before the transplant.
The longer your child has had his or her new kidney, the fewer follow-up appointments are needed. At each clinic visit your child will have his or her weight, height and blood pressure measured as well as blood and urine tests. We will give you more information about checking drug levels and other blood tests during your initial follow up appointment.
Frequently asked questions
The following are questions families often ask us but if the answer to you question is not included in this section, please talk to the Transplant Unit.
Can we go on holiday?
Yes – It is important that you check with your family doctor (GP) to see if any medications are required for the area you wish to visit, such as anti-malarial medication. Your child may need to start taking these medications before, during and after your holiday. Some of these medications may interfere with anti rejection medicines such as tacrolimus, so we may need to alter the dose accordingly.
Children may need extra vaccinations or medicines when visiting some overseas countries. It is advisable to check some months in advance which vaccinations or medicines your child needs, and whether he or she is allowed them. The Transplant Unit will be able to advise you about this (see below) as some vaccinations are prohibited.
If you are travelling outside the UK, always make sure you have adequate medical insurance cover. The Patient Advice Liaison Service (PALS) office at GOSH will be able to assist you.
It is important to remember that exposure to sunlight can cause skin cancer in anyone but this risk is increased in people who have had a transplant because of the medicines they are taking. It is vital that you protect your child from direct sunlight as far as possible, always use a high protection sun cream of SPF 30 or more, and keep him or her covered with a loose long-sleeved t-shirt and hat, and stay in the shade during the middle part of the day.
In warm weather your child may need to drink even more fluid to stop them becoming dehydrated.
Can my child have the usual immunisations?
Part of preparation for transplant is for your child to complete his or her immunisations. After the transplant, your child will be able to have most of his or her usual immunisations but there are a few exceptions:
- MMR (measles, mumps and rubella)
- BCG (tuberculosis)
- Oral polio
- Yellow fever
- Oral typhoid
If you have any questions about immunisations, please telephone the team for advice.
After the transplant, if your child comes into contact with chicken pox or shingles either at school or at home, you should ring the Transplant Unit the same day if possible. If your child has no antibodies to the chicken pox virus we may decide that he or she should have an injection of ZIG (Zoster Immune Globulin) from your family doctor (GP). This applies every time your child comes in contact with chicken pox or shingles.
When will my child be able to go back to school?
Most children are well enough to go back to school after about six weeks although most find it is easier to start gently, perhaps by attending for half days for a while. It is important that your child’s teachers know about the operation.
We are very willing to speak to your child’s school nurse, class or head teacher if you would like us to do so. We often ask schools to help children with their drinks so that they do not become dehydrated during the school day, as this could put the new kidney at risk.
Where do we get supplies of medicines?
We will provide you with the initial supply of medication, then you will need to get further prescriptions from your family doctor (GP). Remember to plan ahead and ensure you have enough medication at all times and that you will not run out, especially over weekends and bank holidays.
You may need to get some of the immunosuppressive medicines from either your local hospital or GOSH – your GP will advise you if this is the case.