If you have a relative or friend with kidney failure, the treatment options are dialysis and, in suitable patients, transplantation. Kidneys for transplantation come either from people who have donated those organs after their death, or from living relatives, friends, spouses or partners.
This section of the NKF website has been written to give information to those considering live kidney donation. More information is always available from the doctor at your renal unit, transplant unit or the transplant coordinator.
There will be a lot of verbal information given to prospective donors, both before and during the assessment period. This information has been prepared to make sure that all prospective live donors and their families can have the opportunity to read about the risks, benefits, investigations, procedure and follow-up associated with donating a kidney. Everything covered here will be discussed on a personal level by the medical staff.
This information is in no way a replacement for face-to-face meeting between the transplant team, the prospective donor; the recipient and their families.
A successful renal transplant is the best treatment for many patients with end stage kidney failure, from the medical, psychological and social points of view. About 3,000 kidney transplants are performed in Britain annually and this is increasing year on year.
In Britain, the majority of transplanted kidneys are from those who have been died (known as cadaveric donors).
In fact, the long-term success rate is better after transplantation from living donors than from cadaveric donors.
Since the make-up of the body within families can be similar; or more rarely - as in the case of identical twins - the same, the likelihood of the recipient's body rejecting the new kidney, is smaller. Therefore, there is a greater chance of a successful kidney transplant if the kidney is donated by a living person. Non-related living donors may also be considered, although it is less likely they will be as good a match. However; the advantage of live kidney donation is that live donor organs are in better condition, as the kidney will be without blood for a very short time, thus increasing the chances of a successful transplant.
One of the most frequent concerns of potential living kidney donors is whether the loss of one kidney will hamper them in later life. A healthy person can live a completely normal life with only one kidney, indeed, some people are born with only one kidney. If a kidney is removed, the remaining kidney increases slightly in size and capacity and can carry on the function of the two. Lifestyle is not affected and normal work can continue.
Therefore, it is possible to remove one kidney from a healthy living person and transplant it into someone who needs it, withlittle or no ill effects on the donor other than the operation itself. Large studies have concluded that there does not appear to be any risk of serious problems from donating a kidney. There is sometimes a slight rise in blood pressure or increased loss of protein in the urine but these do not have an effect on health.
Someone who is thinking about donating one of their kidneys to help a loved one has many things to take into consideration. It is something that has to be thought about seriously from the personal point of view. The medical staff will also want to do tests, which may take a number of months to complete. This is to make sure that the donor is in good physical health and the kidney would be a suitable organ for transplantation.
It’s worth remembering that the operation to remove a healthy person’s kidneys is - as far as their own body is concerned - not of any direct benefit. Although all possible precautions are taken, there is always a small risk when undergoing surgery.
There are practical issues that need to be considered, such as the time taken off from work for the investigations and after the operation, or the domestic responsibilities and arrangements, such as looking after children.
A number of investigations are performed that may uncover an unknown medical condition. Also, they will need to consider facing their future with only one kidney.
The most common types of living donation are between relatives, howeveryou do not have to be genetically related, as donations between spouses and friends are now common place.
The law that allows for living organ donation is the Human Tissue Act (2004). This Act also allows for forms of donation such as non directed altruistic donation and paired and pooled donation. The Act also makes it unlawful for donors to be paid for donating an organ or part organ.
A person should be 18 or over to become a living donor (it is incredibly rare that a person below this age would be considered, and this is not possible in Scotland). There is no strict upper age limit in donating a kidney, but there is less chance that a much older person will pass the medical examination necessary before donation is judged to be safe. However, transplants have taken place from donors in their late 70s.
The problems are usually less for parents of children requiring a transplant, but even here loyalties may be divided between the desire to provide for one child, whilst inevitably depriving other children of one parent for a period of time. This is not a trivial consideration, since the transplantation may come after a prolonged illness for the affected child, during which other children may have felt deprived of their share of parental love. Also, parents, as with all donors, must face up to the possibility that the kidney may not function, and all will have been in vain. Finally, there may be conflict between the parents as to who should give a kidney.
The transplant team is fully aware of all the potential issues – psychological or otherwise – in volunteering as a potential kidney donor. they will always be honest with potential donors. They will also warn of the possible loss of the graft in honest and realistic terms.
It is very important that before volunteering, and throughout the assessment process, close members of the family fully understand the process and consider all the risks and implications. Every family considering a living donor transplant must discuss openly how they all feel, especially if the kidney were to fail and all the subsequent feelings and consequences that may arise.
Before the medical staff can agree to anyone becoming a donor, they must be satisfied that the donated kidney is unlikely to be rejected by the recipient’s body and that the person willing to be a donor is unlikely to suffer ill health as a result of making the donation.
Most people are familiar with the fact that red blood cells have a specific type, or group: A, B, AB or O. In fact, for successful transplantation, the blood group of the potential donor must be compatible with that of the proposed recipient. So, before anything else, the blood group compatibility of donor and recipient must be tested. The different pairs which can be considered are:
|Recipient is:||Donor can be:|
|AB||O, A, B, AB|
A suitable match of blood groups like this is necessary. In those cases where a pair are deemed incompatible, they may be considered for the national paired/pooled scheme.
Paired donation is where a potential donor and recipient whose blood groups or tissue types are mismatched (or incompatible) may be paired with another donor and recipient in the same situation, so that each recipient receives the organ they need.
Although all transplant units will have their own procedures, another blood test that must be undertaken fairly early in the process is to check the donor for viruses. A potential donor’s blood will be examined for the presence of antibodies to certain viruses, such as hepatitis B, hepatitis C, human immunodeficiency virus (HIV – this is the virus which leads to the condition known as AIDS) and cytomegalovirus (CMV). With the exception of CMV, if these viruses are detected, the transplantation cannot normally take place due to risk of disease transmission. CMV is a relation of the chicken pox virus, and can be transmitted during transplantation. Recipients can be affected – from mild influenza-type symptoms to serious pneumonia – but usually modern anti-viral drugs can help combat it.
As has already been discussed, the age of the potential donor is also important. Most frequently donors are considered between the ages of 18 and 75, although donors outside this range have been considered in some circumstances.
To be quite sure that a potential donor will be able to offer an adequately functioning kidney to the recipient, be fit enough to undergo the operation and live normally with just the one kidney, they must be in excellent physical condition and have a clear medical history. During the course of the thorough pre-donation medical assessment, some other – previously undetected – medical conditions may be detected. If tests show evidence of poor kidney function, or if investigations show the possibility of the donor being medically unsuitable, then the donation would be refused.
An important issue regarding suitability of a potential donor is tissue type compatibility. The tissue type of an individual is determined by the type of ‘marker’ proteins on the surface of cells. These proteins can be very varied. The higher percentage of these proteins that match, the greater the likelihood of a successful transplant.
The process of checking the suitability of a donor can take a number of months. To be as certain as possible that the transplantation will be successful – for both recipient and donor – this extensive procedure is necessary and also gives the potential donor plenty of time to consider his or her options.
This section gives more detail on how tissue types can be compatible and how genetic information, which determines tissue type, is distributed within a family. This section is for potential donors and recipients who wish to know more about these subjects.
Each of our body’s cells contain DNA (deoxyribonucleic acid) – the ‘genetic blue print’ for our whole body make-up. One particular part of DNA carries information which determines the production of a series of ‘recognition’ or ‘self’ proteins on the surfaces of cells known as HLAs (human leucocyte antigens). Since all cells in the body have the same DNA, HLAs are present on most cells to a greater or lesser extent. Unfortunately, unlike blood groups, there are many different types of proteins of the HLA system, so it is rare to find a perfect tissue type match in the general population.
Any individual inherits two sets of DNA: one from their father, and one from their mother. The diagram below shows how different tissue types are inherited from the parents.
Within a family, brothers and sisters might inherit the same two sets of DNA from their parents (there is a one in four chance of this happening), or share half their tissue type (a one in two chance of this happening) or inherit completely different genetic information (again, a one in four chance). That is why, a family member is more likely to be a good match.
There is a group of patients for whom tissue type matching is vital. These are patients who have developed a large number of circulating antibodies directed against HLAs. This can result from prior blood transfusion, previous transplant, or pregnancy (since half any baby’s tissue type is necessarily the same as the father’s, it can make the mother sensitive).
A poorly matched living donated kidney, such as from a spouse, usually has good transplant function survival. However; if it fails in the future, it is more likely to cause a large number of antibodies to develop, which sometimes reduces the chances of finding a second suitable donor.
There are two possible approaches. A donor may wait to offer live kidney donation after their loved one has been diagnosed with end stage renal failure. Offering to donate a kidney when the patient has been advised that dialysis will be necessary in the future is known as pre-emptive donation, and this approach is now becoming much more frequent. It can avoid all the problems and difficulties that the renal failure patient may experience with dialysis.
It may also be the case that the potential recipient has already been on the transplant waiting list for some time, and the prospective donor has witnessed a decline in their condition, or seen the disruption to the individual’s and the family’s lifestyle that dialysis can bring.
Medical staff will also be aware of an individual patient’s circumstances, such as the likelihood of a suitable kidney becoming available (whether the patient has a common blood group and/or tissue type).
Whether the suggestion originates from the family member or the medical staff, there is never any substitute for talking the issue through. Direct personal communications are the key to making sure living kidney donation can be successful, both for donors and recipients. The most suitable person for the family member to approach is the transplant coordinator or transplant sister. They can often help to begin the whole long and complicated process involved with donating a kidney.
There are risks and benefits associated with live kidney donation. In this section, we will try to point out both of these aspects for the prospective donor and the recipient:
There is a sequence of tests that is necessary to thoroughly examine the health of the potential donor as well as the well-being and anatomy of the kidney. Below is an example of the types of tests that a potential donor can expect. These tests sometimes involve the potential donor making a short stay in hospital.
Since the kidneys can be a prime target of damage due to high blood pressure, the potential donor’s blood pressure will be checked to exclude high levels, known as hypertension. Sometimes, if slightly higher levels than normal are found, the potential donor may be asked to attend a special assessment centre for numerous readings over a 24-hour period. This usually involves a much quieter setting where noise, bustle and excitement may reduce any stress-related hypertension, or being fitted with a blood pressure monitor at home for 24 hours.
Many underlying conditions can be identified by examination of urine for glucose, protein, blood or bacteria, so all these constituents will be assessed.
Blood samples will be taken for routine analyses: haematology tests can show anaemia or signs of infection and blood chemistry tests can show kidney and liver function, or the suggestions of diabetes. Samples are also tested for hepatitis B and C, HIV, CMV and syphillis. Consent will be obtained before testing for HIV and, if required, counselling will be provided. Another blood test will be taken from both the donor and recipient – to check the recipient does not have ‘antibodies’ which may react against the donor. This test will be repeated just before the operation.
Creatinine is a substance that is produced naturally in our bodies and normally the kidneys remove it continuously. If the kidneys are not functioning well the creatinine level rises. By measuring the levels of creatinine in the bloodstream, and the amount being excreted in the urine over a 24-hour period, a more precise assessment of kidney function can be made.
A series of X-rays, especially of the chest area, may be taken to ensure normal function.
A cardiograph of the heart function may be recorded to exclude unexpected heart disease. In this case, an abnormal tracing of the electrical activity of the heart would be seen, and this could increase the risks associated with anaesthesia during the removal operation.
This is a test to assess the capability of the kidney to ’clear’ the blood of a substance. A small amount of dye is injected into a vein and blood samples are taken at hourly intervals for three hours, to measure the patient’s renal clearance of the dye. It is a similar principle to creatinine clearance estimation, but with more accurate results.
This is a non-invasive scan which checks the size and shape of the kidneys, and can exclude any anatomical abnormalities.
This is the final and most invasive of all the procedures, and involves an injection of dye into one of the large arteries. A special kind of X-ray is then used to reveal all the details of the kidneys and the vessels going to and from them. This is obviously very important, so the surgeons can have a clear idea of which kidney is the better one to remove, and which has the easier access for them. The donor’s anatomy must be normal before the donation can proceed. Throughout this period of assessment, potential donors should bear in mind that there may be a possible reason for the kidney being unacceptable.
Some centres have adopted this investigation in place of the renal angiogram. A rapid special kind of X-ray know as a CT scan is taken of the abdomen. Dye is then injected into a vein in the arm and the scan is repeated. The whole procedure takes about 30 minutes and is done on an outpatient basis.
The financial issues to consider with donating a kidney includes travel, lodging (if the donor lives a considerable distance from the transplant unit), lost wages and other non-medical costs incurred during the recovery period. Because of the nature of the procedure, a donor will probably be in hospital for about 2-5 days, in addition to needing about 2-12 weeks away from work. Whether or not a donor gets paid whilst off work is dependent on their employer. Employers are not obliged to pay sick-pay whilst their employee is not at work. It is sensible to discuss the whole issue with the employer early in the live donor process.
The Human Tissue Act (2004) allows donors to receive reimbursement of expenses, such as travel costs and loss of earnings that are reasonably attributable to, and directly result from, an organ donation.
All such payments must be made by a proper authority, e.g. an NHS Trust or foundation hospital, or, in the case of a private patient, the hospital. Details on the levels of reimbursement are available on the Department of Health website.
Donors must not be reimbursed directly by the recipient or by their family or friends. The HTA requires that checks are made to ensure that no other payment is made and that the donor does not make a profit from the donation.
Regardless of who actually donates the kidney, all family members have the option of participating in the transplant experience, by offering practical and emotional support to those undergoing the surgery.
Another financial issue that may need considering is the cost of private health or life insurance after donation.
The donor should be acceptable to most insurance companies as living a normal life with one kidney, however this is dependent on the particular health or life insurance companies involved, and any premiums may vary accordingly.
There are numerous other practical issues that are worth considering, and planning for, should the kidney donation be accepted and the associated stay in hospital become a reality. A woman donor taking the contraceptive pill should stop one month before the operation – because of an increased risk of thrombosis – and use an alternative contraceptive during this time.
Once the date for the operation has been set, and it’s time to go to the hospital, it’s worth making sure that all the following arrangements have been made:
This checklist can also help in preparing items to be taken for the stay in hospital.
There are many different people in the transplant team and each has a specific role.
The transplant coordinator represents the hub of the team and is responsible for ensuring that the individual aspects of identifying a donor, all pre-donation assessments and the actual operations can run smoothly. They will be aware of what stage has been reached and who is responsible for which part of the process. Simply put, they will coordinate everything to make sure the whole system can proceed as easily as possible.
A team of senior transplant surgeons, one for the donor, the other for the recipient, with other surgeons to assist, will perform the operation. The transplant surgeons have to be sure that all the results of tests for matching the donor to the recipient point to a successful transplant. They must also be sure that both the donor and the recipient are fit to undergo surgery, with the minimum risk. The surgeon who removes the kidney carries overall responsibility for ensuring the safety of the donor.
The consultant kidney specialist is the one, together with the transplant surgeon, who has to be sure that the transplanted kidney would be likely to restore the health and reasonable lifestyle of the intended recipient, and that the donor’s health will not suffer as a result.
There will usually be two anaesthetists, one for the removal operation from the donor, and one for the operation to transplant the kidney to the recipient. It is their responsibility to ensure the health of both patients during the surgical procedures.
The transplant nurse practitioner usually has a wealth of experience in caring for post-transplant patients. Although much of their efforts will be concentrated on the recipient’s recovery, they will also be a reliable source of knowledge for the donor.
After any form of surgical procedure, returning to full activity can be a bit of an uphill struggle. The physiotherapist can frequently advise on methods of making rehabilitation easier.
As we have already pointed out, there can be important psychological effects in considering kidney donation. Whether it’s family pressures or any other emotional discomfort, the psychologist is there to help.
There may be many practical issues that present themselves as problems to potential kidney donors, and a social worker who has knowledge and experience in this particular field can offer a lot of sound advice and support.
In the main, a potential donor’s family doctor will be kept advised of all the events. Once the donor has been discharged from care by the hospital-based transplant team, it is then usual for their general health to be looked after by their GP, although some hospitals run annual follow-up clinics for donors.
Before any donation is possible, both recipient and donor have each to agree that they wish the operation to proceed. If all test results are satisfactory a referral will be made to an Independent Assessor (IA). IAs are trained by the HTA and accredited to assess certain types of living organ transplantation in the UK.
IAs are usually, but not exclusively, based in hospitals with transplant units. IAs act as a representative of both the donor and the HTA in order to help the HTA ensure the requirements of the Human Tissue Act (2004) have been met. IAs submit a report of their assessment to the HTA. The HTA makes the decision whether or not to approve the proposed donation.
The decision to become a donor must not be taken lightly. There is always a risk when undergoing surgery. However the risks are less than with other major surgery because donors must be in excellent health at the time of the operation.
The period of testing and matching, which can continue over several months, provides opportunities for private and confidential discussions with the transplant surgeon, transplant coordinator, consultant kidney specialist and other members of the transplant team.
At any time, a potential donor is free to raise specific concerns which they may not wish to share with other family members or the intended recipient. Equally, at any time, the donor is completely free to withdraw.
The reasons for doing so will be kept confidential. Potential donors are able to raise any doubts, at any time, and nothing is held against them if they decide, even at a late stage, that they do not wish to become a donor.
Sometimes talking to someone else who has been a live donor can be helpful as they have personal experience of the donation, and this can be arranged. It is very important that throughout this process close members of the family can understand fully what is happening and consider carefully all the risks and implications. The support a donor receives from their family can sometimes make the decision-making very complex or very easy.
Under a general anaesthetic, the kidney is removed. This is now most commonly undertaken via a laparoscopic technique (involving small abdominal incisions). Some surgeons still use the ‘open’ technique, although this is now less common. The kidney is flushed with a cold solution to wash out blood and slow the metabolism before being carried into the adjacent operating theatre in which the recipient is waiting.
The donor then returns, via the recovery room, to the ward. Sometimes a temporary drain is fitted in or near the wound. Fluids can be administered through a drip and, because the incision can be a painful one afterwards, injections or infusions of pain-killing drugs can be added to this.
Tubes are usually removed after the first day and the donor encouraged to get up and sit in a chair. That way, the risk of complications can be minimised.
A donor’s stay in hospital is usually between 2 and 5 days. They can expect to be out of bed the day after the operation and home soon thereafter. The wound may remain sensitive for several weeks. There can be ‘twinges’ or a ‘drawing’ sensation for up to three or six months. Sometimes a small area of numbness may be noticed on the skin of the tummy or abdomen, because small nerves have been cut by the incision at the side. However, a scar should be the only permanent reminder of the donor operation. The donor will have to take 2-12 weeks away from work to recuperate, depending on the individual and their occupation.
Before leaving hospital, a clinic appointment will be made for the donor. This will probably be for between four and six weeks after discharge. An annual appointment with the transplant centre or the GP is advisable to ensure that there are no long-term side effects.
The kidney is put into the outer pelvis – protected by the hip bone – low down and to one side of the bladder, and the blood vessels of the kidney are joined to the large blood vessels supplying the leg. The kidney lies snugly here away from the intestines and their covering, and the ureter can more easily be sewn into the bladder.
The recipient should be out of bed within one or two days. After only a few days, most or all of the various tubes necessary for the operation will be removed. Sometimes before, but always during and after the transplant, medicines to suppress the immune system will be necessary. These drugs help the recipient’s body to tolerate a ‘foreign’ organ. In the early stages, the medication may be in the form of infusions; later this will change to tablets. Although the dosage may be reduced over time, this medication will have to be taken by the recipient for the entire life of the graft.
The most anxious time for both recipient and donor is the wait to see if the new kidney functions well. Depending on how successful the transplant has been, the recipient can expect to leave hospital between one and three weeks after the graft has been performed. By that time, they will probably already be feeling the benefit of the operation. Usually, recipients will have to be seen in the transplant out-patient clinic quite frequently to begin with, but this becomes less frequent as time progresses.
The long-term follow-up of donors varies according to the transplant centre; in some it can be for life, in others it can be anything from 10 years to a single post-operative clinic visit. The surgical follow-up always occurs, to make sure that the wound has healed nicely, that the donor is fully recovered from the operation and that the remaining kidney is working well.
After donating a kidney, some people feel a sense of anticlimax; so much time has been spent thinking and worrying about the operation that life may seem a little empty afterwards. Also, they may feel sad and have an unconscious resentment toward the recipient, if they feel unsupported by relatives and hospital staff after surgery, as attention is shifted to the recipient.
This kind of feeling can be more pronounced if the recipient does poorly or rejects the organ. In this case, counselling facilities are provided for the donor in some centres.
It is very important to maintain a normal, relaxed attitude towards the recipient and the rest of the family. Patients who receive kidneys are always grateful, but they are unable to repay the gift. So it is important to avoid reminding them of their ‘debt’.
The success of the transplant is judged by how well the transplanted kidney works and how quickly the patient returns to full health. The first three months after a transplant are when most problems occur. Once these are over, both the donor and the recipient can settle back into a normal routine, quietly secure in the knowledge that a wonderful gift has been given and received.
Depending on their type of work, a donor can expect to be at home recuperating after the operation for 2-12 weeks. Sometimes, this can be a frustrating time, wanting to return to a normal life, but without the energy and overall health. Patience is required, as is support from other family members.
If the donor regularly sees the recipient, this can be an added source of satisfaction; watching their return to good health can ease some of the possible negative feelings.
Other aspects of life can return to normal as soon as the donor feels up to it.
The DVLA in Swansea has no hard and fast rules with regard to starting to drive again. In the main, if they feel okay and their GP agrees to it, a donor can return to driving when they feel capable, usually after 4-6 weeks.
However, they must be aware that long journeys could prove problematic, and that they ‘shouldn’t overdo things’. Car insurance should be checked, as the length after the operation that you are not insured to drive varies depending on your policy.
There is no standard typical period before sexual intercourse can be considered. Donors should be able to resume their usual sexual relationships as soon as they feel comfortable. It may take a few months before normal activities can be undertaken, but this depends on the individual and their recuperation.
Maintaining a healthy lifestyle is as important after donation as beforehand. Any post-donation exercise programme should begin slowly with the length of time spent exercising, and the effort involved, being increased over a period of time.
If you have a loved one with kidney failure who must have, or will need, a transplant, and you want to help – whether you are genetically related or not – please ask to speak to the transplant coordinator, transplant surgeon or kidney specialist of the kidney unit which is treating them.
Transplant coordinators are responsible for all liaison between members of the transplant team and for the administration of a transplant operation. An important part of their work is to keep patients and their families informed during the preparation and progress of the operation. They have very wide experience and will be happy to spend time discussing the question with you before arranging a preliminary meeting with the transplant surgeon or kidney specialist.
Further information about local transplant services and how these operate is available from:
UK Transplant Co-ordinators Association
P0 Box 6300
Tel/Fax: 07071 223171
If you are considering Live Kidney donation, either as a donor or recipient and would like to talk with someone who has experience of being either a Kidney Donor of Live Kidney Transplant recipient, then the National Kidney Federation (NKF) would be happy to put you in touch with such a person. Please ring the National Kidney Patients’ Helpline on (0845) 601 02 09 and make your request known.
Fox Den Road
Tel: 0300 123 232
Fax: 0117 975 7577
The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.