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Living donor transplantation

 

 

Why do I want to be a donor?

There must be a powerful reason why you wish to donate, and this is usually because of your concern for your relative, spouse, partner or friend who is in need of a kidney transplant. Parents consider themselves as natural donors as an extension of their role. This is probably the most natural pairing - a parent as the donor and son or daughter as recipient. However, brothers and sisters frequently donate because of their love and concern for the well-being of their sibling. These days, others who are not “blood” relatives are donating kidneys too; most commonly spouses or life partners who have lived with each other for many years, perhaps had a family together, and it is in each other’s interest to help make their partner better. They already share the burden of kidney failure and dialysis.

However, others such as cousins, aunts and uncles, and even friends, are increasingly offering to be kidney donors. 
No matter who offers to become a kidney donor, all are giving on the basis of improving the health of a person they care about and it is an extraordinarily generous thing to do. The giving of a part of oneself for the benefit of another has to be considered one of the most selfless and wonderful acts of human nature. Society as a whole can only gain from such acts of unmitigated kindness. All donors should be proud of their generosity and unselfishness.

The act of donation should be undertaken without any pressure or coercion. Donation should be a voluntary process, and it is not for everybody. Some are frightened by the very idea of a needle for blood tests, never mind an operation, and you should not undertake the procedure if you have any qualms at all. Even if you take the first step to go and talk to doctors and nurses about kidney donation, this will not be taken as a sign that you are a willing donor, just as a sign that you wish to have more information.

All potential donors have the option of pulling out of the donation process up until the very day of surgery. Naturally the further you go down the road of investigation, the less you yourself will feel able to pull out, so you should think hard before you make your initial decision to go ahead. If you feel that it is probably not the best option for you, do not feel that you are letting your loved-one down; they are lucky indeed if they have somebody who cares enough about them to even consider donation. Do not feel guilty.

 

Things to think about before considering kidney donation:

Donating a kidney involves personal inconvenience, time off work and time away from the family. You should also consider the following questions:

  • What are the risks and benefits to you if you donate?
  • What impact will donation make to your relationship with the recipient and other family members?
  • Will you be able to take the time off work?
  • Will your employer allow the time off before and after the operation, and can you financially afford to have the time off?
  • How will you feel if the doctors find something that prevents you from being a donor?
  • How will you feel if the transplant is lost early despite your hopes and wishes?

    The last question is particularly important since sometimes there is early loss of the donor kidney, even whilst you are still in hospital. If this happens, it may have a devastating effect. You must consider the emotional consequences for you personally as well as for the recipient. In this situation clearly you will have done your best for the recipient but will this be enough to assuage the shock of the kidney loss?

     

    Who can be a living organ donor?

    The new human tissue act (1st September 2006), allows donation from people other than those in a close relationship with the recipient. Pooled and paired donation is now more possible, as well as altruistic donation with no particular donor in mind, is now an option for increasing the number of living kidney donors.

    A living kidney donation is always ‘altruistic’, but this is now possible 
    between people who have never met. The term for this is ‘non-directed altruistic donation’. Confidentiality is always respected, so donor and recipient will stay anonymous. Already in Belgium and Holland altruistic donation has worked well – it is anticipated that the case will be the same here in the UK. 
    The first step for someone wanting to donate in this way would be to contact their local transplant centre, so that an assessment can be made. Pooled or paired donation enables donors and recipients with incompatible blood groups or tissue types to find suitable matches among other people who want to give a kidney, but who suffer the same problems with incompatibility with the person they’d like to donate to.

    •  A ‘Paired’ donation is a simple swap of donors so that a match is made
    • ‘Pooled’ donation involves more than two donors and two recipients in the swap.

    These new types of live donors operation will widen the pool of recipients who will be able to benefit from live donation. 
    All those interested in taking part in paired or pooled donation will have their details entered onto a national register for matching, once detailed assessment and a confirmation of suitability to donate are successfully completed. 
    A few live donors may need continuing monitoring: for example, blood pressure checks or liver function tests if these have been indicated during assessment. 
    Anyone thinking of living donation will need to see an Independent Assessor (IA). This will be done locally for each couple, once the medical and compatibility checks are successfully completed.

     

    The independent assessor will want to know:

    • The nature of any relationship. This will need to be supported by ‘evidence’. The local transplant unit will give further details on this.
    • That there is no coercion or pressure to donate.
    • That there are no financial inducements (i.e. that the donor isn’t being paid to be a donor).
    • That the full implications are understood by both parties.
    • That consent is given freely and voluntarily.

    Couples are assessed separately and together. Once the independent 
    assessment is complete, a report is made and the recommendation is passed back to the local transplant centre. 
    Donors have to be over 18, but there is no upper age limit.. There has even been the occasional 80 year old who has donated to a spouse or sibling that is similar in age. The decision to go ahead is dependent on being fit and healthy and having two kidneys which are working well.

     

    Does my blood group matter?

    Yes – your blood group has to be compatible with the transplant recipient’s group, although not necessarily the same. The relationship between donor blood group and recipient blood group compatibility is as follows:

     

    Donor blood group

    Matching blood groups for the recipient

    O (47% donors) (‘Universal Donor’)

    A, B, AB, O

    A (40% of donors)

    A, AB

    B (9% of donors)

    B, AB

    AB (4% donors)

    AB (‘Universal recipient)

     

    Blood group is established by a simple blood test and can even be performed by your GP. Different members of the family may well have different blood groups and therefore may be ruled out by this simple test. Blood group O donors can give to any other blood group recipient and blood group AB recipients can receive kidneys from any blood group donors.

     

    How does my tissue type affect donation?

    Every individual inherits “tissue type” genes from their parents. are also known as HLA genes (Human Leucocyte Antigen) and they are important in helping the body to detect invasion by ‘foreign’ things such as germs. These genes are within the genetic material of virtually every cell in the body, and each of us receives a set of genes from our mother and father, making two sets altogether.

    There are many tissue type genes but three are particularly important in transplantation, called HLA ‘A’, HLA ‘B’ and HLA ‘DR’. (There is also an HLA ‘C’ gene but this is not considered as important as the other three genes.) There are many different HLA ‘A’, ‘B’ and ‘DR’ genes and so it is difficult to find two people perfectly alike. It is not impossible, however, and in a family of five brothers and sisters, at least two will have the same tissue type. Even if there are only two siblings, there is still a 1 in 4 chance they may have the same tissue type. However, there is a 1 in 4 chance that they will be completely different, and a 2 in 4 chance of being half matched. So tests will usually show that brothers and sisters are either a “perfect” match, half match or completely mismatched.

    The better matched you are, the better the long-term outcome for the transplant. But live donor transplants are better than cadaver transplants, so that a poorly matched live donor transplant still does better on average than a well-matched cadaver transplant. This is because a live donor kidney, whether it is from a well matched or poorly matched donor, is of good quality from a healthy donor, is taken out and transplanted in the best of circumstances, and therefore the kidney suffers less damage.

     

    What are the benefits of becoming a donor?

    The single and most considerable benefit is that you will be helping to 
    restore someone’s health. In addition, you have given a kidney to someone who would otherwise have needed a kidney from a cadaver donor, so that the cadaver kidney can be given to someone else. In other words, you have helped two people. Live donors generally experience an emotional and psychological boost following the donation process and this stays with them, often resulting in the donor feeling even closer to the recipient than before.

     

    What are the risks?

    • Loss of pay for time off work, both before and after your operation, and this may be a real issue for you if you are the main “breadwinner” for your family
    • There will obviously be a scar, the size of which will depend on the technique used by the transplant surgeon, but has to be a minimum of 3 inches in order to remove the kidney. Laparoscopic (keyhole) surgery is available in some centers. This reduces scarring, the risk of infection and shortens recover time and the stay in hospital. However, as with any surgery, there is still some risk
    • Infection of the wound or urine. Both infections will respond to antibiotic therapy
    • Pneumothorax occurs when the lining around the lung is breached, giving rise to air in the space between the lung and the chest wall. This can happen, since the kidney is very close to the lining of the lung, beneath the rib cage. If this happens, a tube is placed for a day or so into the chest cavity to remove the air. This does not have any long lasting effects
    • Nerve entrapment can occur during closure or healing of the wound. If this happens, there may be some numbness or pins and needles below the site of the scar. On rare occasions, pain may be long lasting
    • Chest infection is much more likely to happen if you are a smoker and you should make every effort to stop smoking well in advance of the surgery date
    • Unexpected bleeding occasionally occurs during any operation, including during removal of the kidney (and - very rarely – after the operation). If this happens, you may need a blood transfusion
    • Psychological issues - after all the anxiety leading up to the transplant and the transplant procedure itself, there can be an experience of anticlimax and a feeling of emptiness. Indeed, since the focus after the transplant is on the recipient, the donor can feel a sense of depression. This is usually only short-lived
    • Sometimes the bowel takes a little while to get going after your operation and this is called “ileus”. Most often this disappears after a few days. There are plenty of proprietary preparations which deal with constipation
    • The main serious risk is that of death – usually due to heart attack or following deep vein thrombosis. You will undergo tests to exclude any heart problems. If you have any inkling of chest pain or other signs of heart problems, such as irregularity of the heartbeat, you must tell the medical staff. Do not keep it to yourself. No one gains by a tragedy. Thrombosis in the veins of the leg or pelvis can occur after any surgical operation. Very occasionally, the clot moves from the leg up into the heart and lungs. Most clots are small and do not cause a major problem but if a large clot moves then death can occur. The risk of death from both the causes is normally quoted to be 1 in 3,000 donor operations and so is not common. Nevertheless, it is something that you must take into account when making your decision.

    Will being a donor change my relationship with the recipient?

    Your relationship may change for several reasons: the recipient may feel guilty putting you through the whole procedure, or you yourself may be uncertain as to whether you want to go through with the process. There might also be other members of the family who wish to donate, so very occasionally there may be disagreement as to who should be the donor. Generally the best matched donor is selected, although there may be additional issues which may preclude this choice. If this happens, the best thing is to talk it through but if this is difficult then there will always be someone at the hospital to discuss matters with. Remember, anything you say to the staff in the hospital is private and confidential and will not be discussed with the recipient or other family members unless you consent to this.

     

    Will the scar be ugly?

    Clearly no operation can be performed without leaving a scar, but every effort is made to reduce the size of the scar when an incision is made. Remember most of them fade to a thin, white, almost imperceptible scar with time.

     

    Can I get financial help if I become a donor?

    Becoming a kidney donor has cost implications, especially if you are working and have to have time off without pay. Don’t be afraid to discuss this issue openly with the transplant centre staff, who will be happy to approach the recipient’s Health Authority on your behalf to try and seek reimbursement of your expenses. Health authorities will review requests for re-imbursement of expenses on a case-by-case basis, up to twelve weeks after donation. They tend to take the view that transplantation saves the considerable costs of dialysis. However, any consideration given will be discretionary. One example of expenses could be loss of pay. Any claim would need to be supported with wage slips or other forms of evidence. It is important that the financial implications are looked into whilst preparation and assessment is in progress – well before transplantation.

     

    Will I be able to get health insurance?

    It is unlikely that a kidney donor will be turned down for life insurance, or be penalised with a higher premium. However, each individual donor will need to discuss this with his or her insurance company, as most insurance companies will not generalise. The transplant consultant will be able to write to them on your behalf if there is a problem. In general, live donors live longer than the average population since they have had to pass stringent tests to become a donor!

     

    Will I be able to have children after the operation?

    There is no reason to think that donating a kidney will reduce your ability to have children in the future. You should perhaps leave trying to conceive a child for at least six months following surgery in order to give you time to recuperate fully.

     

    What medical tests will I have to undergo prior to the transplant?

    You must be absolutely fit and healthy - all the tests are being carried out to make sure you are fit enough to donate. The risks to a donor will be minimised because of the tests. Each nurse and doctor involved in the assessment will have the donors’ health as a priority.

    Age by itself is not a barrier but clearly the older you are the more care needs to be taken in the assessment process. Sibling-to-sibling or spouse-to-spouse transplants have been successfully performed for donor/recipient pairs in their 70s.

    Your medical history will be taken and you will undergo a thorough examination. Your GP will also be contacted to reveal any problems that you may have had. The examination will particularly focus on your blood pressure, since high blood pressure is a common problem. Quite often, blood pressure may be high when taken in clinic but this may be due to anxiety at attending hospital. You may be asked to go to your GP to have your blood pressure measured, or be given a blood pressure monitor which measures your blood pressure throughout the day (ambulatory blood pressure monitoring). It has been shown that blood pressure often goes up when someone visits a hospital or is faced with a doctor!

    You will undergo a series of tests:

    • Chest x-ray - to make sure that there is no abnormality in your lungs
    • ECG - a test which ensures that the heart is regular and that there is no evidence of a previous heart attack or other abnormality
    • Full blood count - to make sure that you are not anaemic
    • Biochemistry - to make sure that your kidneys are working well. This is measured by checking the urea and serum creatinine levels
    • Urine test - to make sure that there is no infection, blood or protein in your urine
    • Creatinine clearance - this test measures kidney function more sensitively. Creatinine is a product of muscle breakdown and is excreted through the kidneys. The rate at which it is excreted from the blood is a measure of kidney function. A 24-hour urine sample and an accompanying blood test to measure blood creatinine are necessary – although unfortunately many people forget to get a complete 24-hour sample!
    • Blood tests for Hepatitis B and C, HIV and Cytomegalovirus (CMV) are mandatory. No transplant can go ahead without these tests having been performed. If you are uncomfortable about having an HIV test you can discuss your concerns with the transplant centre staff. Cytomegalovirus is an infection that you may have had in the past and this can be checked with a simple blood test. There is usually no problem in going ahead with the donation if you have had CMV but it is useful for the transplant centre staff to know, particularly if your transplant recipient has not had the infection, as there is an increased risk of passing the virus to the recipient
    • Ultrasound - this simple test will establish that you have two functioning kidneys and assess kidney size
    •  Renogram - some units perform this test to assess the relative function of both of your kidneys. Most people have equal function in both kidneys but in some, one kidney is better than the other: this test helps to decide which kidney to remove or whether to halt the donation procedure should one kidney be very much worse than the other
    • Cross-match test - this is not for blood cross-matching, but tests whether the potential recipient has any pre-existing antibodies against the donor tissue type. If there are any such antibodies, then these will cause rapid rejection of the transplant. So it is a crucial test and requires taking blood from you and your potential transplant recipient. The lymphocytes from the donor blood are isolated and the serum (blood without the red cells) from the potential recipient are mixed together. If there is no adverse reaction between the two then the test is “negative” and means that the transplant can go ahead. If it is “positive”, it means that your potential transplant recipient has antibodies to your tissue. This is an absolutely essential test and is usually done as soon as you have been identified as the donor
    • Isotope GFR - In order to get a good idea of the function of your kidneys, some units perform isotope glomerulo-filtration rate (GFR) assessment. A radioactive agent is injected into the vein and blood samples are taken at hourly intervals for three hours. This is another means of assessing creatinine clearance but is generally more accurate since it does not require 24-hour urine collection, which is often inadequately collected
    • X-rays to define the circulation to the kidneys - these are usually the last tests, performed after everything else has been done and it has been decided that you are suitable for kidney donation. The test assesses how many arteries there are to your kidney. Most kidneys have a single artery but others have two or even three arteries. Clearly the more arteries there are, the more technically difficult the operation. Surgeons normally take out the kidney with the simplest blood supply, preferably the left kidney, which has a longer vein making the operation simpler in the donor and the recipient
    • An Independent assessment according to the new Human Tissue Authority Legislation – effective 1st September 2006. The detail has been discussed above in the section on Who can be a Living Organ Donor – please see above, on page two

    Kidney survival time

    % survival rates 
    cadaver kidneys

    % survival rates 
    live donor kidneys

    At one year

    85-90

    90-95

    At five years

    70

    80

    At fifteen years

    50

    60

     

    The survival of the transplant cannot be predicted individually since this depends on the interaction between the recipient’s immune system, the drugs taken to suppress the immune response and the donor kidney. The figures above are general, but give a good idea of the current status of transplantation. Despite the fact that transplants do not last forever, it is still in the vital interest of the recipient to undergo transplantation. It has been shown that the long-term future of a dialysis patient depends on receiving a transplant.

     

    Might I develop any health problems later?

    Donating a kidney should not change your life expectancy, and there is even a suggestion that healthy kidney donors may actually live longer than the general population since only very healthy people become kidney donors in the first place.Will I regain my physical fitness or will I be restricted in my activities?The vast majority of donors return to all their previous physical activities prior to their kidney donation. A small minority of donors do report a little restriction in activity but you will be encouraged to return to a healthy lifestyle by eating a balanced diet, taking regular exercise and attending for medical check-ups with your GP or transplant centre.What if one day I might need to give a kidney to one of my children or spouse?This is an imponderable question. It depends on what the risks are of your children or spouse developing kidney failure. Is there any reason for you to suspect that they might develop kidney failure in the future? None of us can predict the future so you will have to make the decision on the basis of current knowledge and understanding. In the future, other members of the family could be donors for them. Kidney failure is not that common.

     

    Why might I be turned down as a donor?

    • High blood pressure - this is one of the more common reasons why donors are turned down for transplantation
    • Kidney stones - if you have had kidney stones in the past, the issue may arise as to whether it is safe for you to give a kidney if there is a risk of recurrent stones. You may undergo tests to check if there are metabolic reasons for the stones, in which case it would not be appropriate to go ahead
    • Heart Problems - generally heart problems absolutely rule out the option of being a kidney donor. If you are experiencing symptoms of chest pain, or there is an irregularity on your ECG, the specialist assessing you will organise more detailed investigations, such as echocardiogram, treadmill exercise test, MIBI scan and 24-hour ECG. It is important that you do not try to hide any unusual symptoms even though they may be mild. No one benefits, least of all your recipient, if something bad happens to you
    • Smoking - it is common knowledge that smoking is bad for your general health, and your lungs in particular, so if you smoke you are more likely to develop a chest infection after the operation. Whilst doctors will not usually use your smoking habit to prevent you from donating, they will strongly encourage you not to smoke for several weeks before the operation
    • Being overweight - the more overweight you are, the more difficult it is for the surgeon to remove the kidney and the more likely it is that you will develop some problems after surgery. Getting mobile as soon as possible after your operation is essential, and this may be difficult if you are grossly overweight. Chest infection is more likely, as are other problems such as wound infection and deep vein thrombosis. Losing weight is difficult but can be done; motivation is clearly a very important factor. Dieticians at the hospital will be able to give you healthy eating advice and increasing exercise to burn up calories will help
    • Protein in the urine - protein is a very important constituent of your blood and is conserved as the blood passes through your kidneys. However, a tiny amount leaks out into urine in most people. One of the first signs of problems with the kidneys is an increasing amount of protein in the urine; this is particularly so in diabetics. If you have more than an acceptable level of protein in your urine, then you will not be suitable as a kidney donor
    • High glucose Level - the glucose (sugar) level in the blood is high in diabetics. There is a state before diabetes is actually diagnosed called latent diabetes, when blood sugar levels may be slightly high, particularly after eating. If there is any hint of you having a high blood sugar level then your doctors will perform further tests. It is inappropriate to take a kidney from someone who may in due course develop diabetes and who subsequently runs the risk of developing kidney disease themselves
    • Blood in the urine - this is known as haematuria. It is abnormal for blood to be present in urine, apart from when a woman is having a period, so any blood in urine has to be taken seriously. Your doctors will very likely require several repeat urine tests to confirm the presence of blood in the urine, and will wish to investigate further before accepting you as a donorWho can I discuss this with further?The best way to gain information is to talk to the doctors, transplant coordinators and nurses who specialise in the field of live donor transplantation in the local transplant centre. They are there to provide information, help and support - and will not coerce you into being a donor. Talking to them will give you the best idea of what it is like going through the donation process, about the operation and the recovery period. They may also run special live donor meetings at which previous kidney donors and recipients give firsthand accounts of their experience.