Introduction to kidney transplant

Undergoing a transplant can be an exiting and challenging time for everyone involved.

This leaflet is intended to provide an overview of transplantation. It is not a complete guide but will help you to prepare for a transplant. It will tell you about getting onto the transplant waiting list, where the organs come from and provides some guidelines as to what you can expect before and after the operation. In addition, it will tell you about the medicines and outpatient clinic appointments that are required after a transplant.

Where do donor organs come from?

There are two sources of donor organs, from a living person (living donation) or from a person who has died (cadaveric donation).

Who can be a living donor?

For a living related transplant, a blood relationship has to be demonstrated between the donor and recipient. There are also living unrelated donors, this might be a spouse (i.e. husband to wife) or occasionally a friend to friend transplant.

How is a potential living donor assessed?

When people are considering living donation they have the opportunity to meet with a transplant co-ordinator and talk about exactly what will be involved.

The first stage is to check the potential donor and recipient’s blood group compatibility. If they are compatible further blood tests will be taken to determine tissue typing and antibody cross-match. These blood tests will determine if it possible to proceed further.

The potential living donor must be willing to donate a kidney and be in good health. They will be seen by a clinical psychologist and undergo checks on their physical fitness. The tests they will under go include blood and urine studies, chest x-rays, electrocardiograms (ECG) and a stress test (on a treadmill). A renal arteriogram is also performed. This is a type of x-ray to visualise the blood vessels in the kidneys. If the donor is medically suitable and the recipient wishes to receive the kidney, the operation is arranged at an appropriate time for both donor and recipient.

A donor may withdraw from donation at any time during the process if they wish and can expect their reasons for doing so to remain confidential. Donors must be donating of their own free will without payment or pressure from anybody and are protected under the law that stipulates this.

Will kidney donation affect the future for the living donor?

There is no reason why a person with one healthy kidney should not lead a full and active life.

How does some one receive a kidney from a cadaveric organ donation?

Most people requiring a kidney transplant will go on the waiting list to receive a kidney from someone who has died. The donor is blood grouped and tissue typed and then the best matched patient is usually selected as the recipient. An exchange system exists in the UK for distributing kidneys to the best-matched patient. It is possible that the kidney you will receive has come from another city or even, occasionally, from abroad.

The call to come to the hospital for your transplant may be very sudden. This is because we never know exactly when a kidney will become available.

Is it possible to catch any illnesses from a transplanted kidney?

It is not possible to guarantee that a person will not develop an illness passed on to them from a transplanted organ. However, in much the same way as blood donors are screened, all donated organs and the people they come from are checked for the presence of certain diseases. All donors have their medical and social history checked to see if they are in a high risk category for certain diseases, to ensure that they do not have cancer and tests are made for hepatitis, cytomegalovirus (CMV), HIV - the AIDS virus - as well as syphillis and toxoplasmosis.

How does somebody get onto the transplant waiting list

If you wish to be considered for a transplant, you will need to raise the matter with your consultant. Your consultant will refer you to the transplant team for assessment. This consists of appointments in outpatients clinic and routine tests to see if you are medically suitable. If it is considered that undergoing transplant surgery will be too high risk for you to benefit from, this will be discussed with you in outpatients. If you are considered suitable, your name will be placed on a transplant waiting list for a kidney that matches your blood group and tissue type. This can happen just before you start dialysis and at anytime once you are on dialysis.

If you want to discuss transplantation with somebody first, please do not hesitate to contact the transplant co-ordinators at Cardiff Royal Infirmary, who will be able to supply you with more information and answer queries that you may have.

How long does somebody wait for a kidney transplant?

If you are able to have a live transplant, the different tests will have to be completed before a day can be decided on for the operation.

If you are waiting for a cadaveric kidney, it may take time for a kidney to become available that is suitable for you. On average, in Cardiff, the wait for a transplant is about 1½ years. Some people are fortunate and have a transplant very quickly, others will spend longer on the waiting list. Take time to think about what will happen when you receive a call for a transplant and then remain prepared and positive but get on with your life in the meantime.

What happens when somebody is called in for a transplant operation?

1. Admission to hospital

If it is planned for you to receive a kidney from a relative, you will be asked to come into hospital a couple of days before the operation, to be seen on the ward by the doctors and the anaesthetist. You will then probably be able to go home and come back to the hospital a day before the operation.

If you have been matched for a cadaveric kidney, you will be called and admitted as soon as possible after the match has been made. Please make sure that the transplant co-ordinators have contact numbers to enable them to contact you. It may be possible for you to borrow a pager so that you can be contacted when you are not at home. If you are going to be away overnight please let the co-ordinators know and where possible give a contact number.

2. More tests!

When a kidney has been identified for you, what is known as the "cross-match test" takes place to make sure that you do not have antibodies against the kidney. If these antibodies are present then the operation will not be able to proceed. Other tests ensuring your fitness for surgery on that day will also take place and it might be necessary for you to receive some dialysis or carry out a peritoneal dialysis exchange before undergoing surgery.

3. Before the operation

You will not be allowed to eat or drink for approximately 6-8 hours prior to the operation. You will be given pre-operative medicines before you go to theatre. The actual operation will take about 2-3 hours. You may also be asked to take part in clinical research. This is not compulsory and if you decide not to take part it will not affect your treatment or care in any way.

4. The operation

During the operation, the donated kidney is placed just above the groin on the left or right side. It will be connected to blood vessels and to your bladder. Your own kidneys will not normally be touched at all.

5. After the operation

The new kidney may not work immediately. This is quite common but requires patience on your part. Alternatively, the kidney may produce large volumes of urine. You will have a catheter in place so that the output may be measured each hour and so that the bladder will be kept empty initially. This catheter will normally remain in for about 5 days. The urine may be quite bloody at first. This is normal. Daily blood tests will be performed in order to monitor the function of the kidney.

You will be seen by the physiotherapist who will assist you with deep breathing exercises to prevent chest infection. You will be assisted to get up and out of bed as soon as it is safe for you to do so.

Good nutrition is important to help you heal and replace muscle tissue. Once your new kidney is working well you will be encouraged to drink a lot of food and you will be able to start to have normal food.

6. Visitors

We would suggest that only close relatives and friends visit, especially during the first few days after your operation.

The Renal Unit’s visiting times are:

Weekdays 4 pm – 8 pm

Weekends 2 pm – 8 pm

If you wish to have visitors outside these times or you wish children to visit please contact the nurses who are caring for you at that time. It is also best if visitors who have a cold or any other infection do not attend the ward.

What medicines are required after somebody has received a transplant?

Following your transplant operation, all your medication will be reviewed. At the time of your transplant you will commence immunosuppressant drugs. This is because the human body possesses a powerful natural defence system that can identify and take action against any foreign tissue that is introduced into it. Although donor organs are carefully matched to transplant patients, the body will still recognise the kidney as foreign and attempt to reject it. The majority of transplant patients will experience some degree of acute rejection following transplantation.

You will need to continue taking immunosuppressant medicines for as long as your transplanted kidney is working. If you stop taking them, or take them irregularly you increase the chance of rejection and other complications happening which will cause permanent damage to the kidney and may lead to its failure.

side effects

These medications do have side-effects and it is normal for patients to experience these. Not everyone gets the same effects but it is important to be aware of them. The dose of the drugs will be adjusted to meet your individual needs and are normally reduced over the first few months. Side effects should reduce with the decrease in dosage.

medicines

The table below shows some of the drugs you may require following a transplant and gives a little information on the side-effects that may occur.

Drug & preparation form

Purpose

When to take

Possible side effects

Aspirin

75 mg tablet

prevents blood clotting

daily after food

stomach irritation

Azathioprine

25 mg tablet 50 mg tablet

prevents rejection

once daily

nausea, high blood pressure, osteoporosis

Co-trimoxazole (Septrin)

480 mg tablet

antibiotic – prevents infection

once daily for 3 months

sore tongue, stomach irritation

Cyclosporin (Neoral)

25 mg capsule 50 mg capsule 100 mg capsule

prevents rejection

twice daily – avoid grapefruit juice

increased hair growth, sore gums, tremors, stomach irritation, increased risk of cancer

Omeprazole (Losec)

10 mg capsule 20 mg capsule

reduces stomach acid

once daily

stomach upset, headache

Mycophenolate mofetil (Cellcept)

250 mg capsule 500 mg tablet

prevents rejection

two to four times daily

diarrhoea, nausea, high blood pressure

Nifedipine SR

10 mg tablet

controls blood pressure, protects the kidney

twice daily

flushes, headaches

Prednisolone plain

1 mg tablet 5 mg tablet

prevents rejection

morning with or after food

stomach irritation, bruise more easily, increased appetite & weight gain

Tacrolimus (Prograf)

1 mg capsule 5 mg capsule

prevents rejection

twice daily

avoid grapefruit juice

tremor, gastric irritation, occasional headaches, increased risk of cancer

know your medicines

You should make sure that you know what drugs you are taking, why you are taking them and what the current dosage is. You will be given a medicine card before you leave hospital and the drugs explained to you. Always take your medication record card with you to doctor’s appointments so that it can be updated as necessary.

All your medication is of equal importance and should not be stopped unless on doctor’s instructions. Always make sure that you have enough medication to last over holiday periods, e.g. bank holiday weekends, Easter & Christmas.

Finally, keep your medication in a safe place, out of the reach of children.

prescription charges

Transplant patients do not automatically qualify for prescription exemption certificates. Many patients have previous certificates that have not yet expired, or come within the exemption categories on the grounds of low income or ill health. If you are not exempt, you may find it worthwhile purchasing a certificate for pre-payment. At present this will cost £30.10 for 4 months or £80.50 for a year.

How long will a transplanted kidney last?

We hope that every transplanted kidney will work for a long time but there can be no guarantees. Very occasionally, kidneys will not start to function or will only function for a short while. This is obviously very disappointing and can be difficult to cope with at the time but if this should occur there will be support for you from the transplant team. If you receive a kidney that does eventually fail then you will need to return to dialysis. It will be possible, should you want to, to go back on the waiting list for a second kidney.

What is immunosuppression & what is rejection?

As mentioned above, the human body possesses a powerful natural defence system that can identify and take action against any foreign body that is introduced into it. Although donor organs are carefully matched to transplant patients, the body will still recognise it as foreign and attempt to reject it. For this reason, transplant patients are given immunosuppressant medicines to reduce the power of the immune system and prevent rejection.

acute rejection?

This is when the body puts up a degree of resistance to the kidney at an early stage. These episodes can normally be treated with changes to the drug therapy. They may require a further hospital stay and a biopsy of the kidney to have a look at what is happening to the tissue.

chronic rejection

This a rejection that may occur anytime following a transplant. It could be five, ten or twenty years following the surgery. This type of rejection will be picked up from blood tests and you may not be aware that it is occurring. This type of rejection is more difficult to treat with drug therapy and may over time lead to the eventual failing of the kidney and a return to dialysis.

What are the signs of rejection?

Decreased urine output is the most common sign of rejection. Weight gain or any unusual swelling of the hands or ankles are other indications to watch for. So it is advisable to keep an eye on your weight. Your blood pressure may go up and you can have a high temperature, often associated with chills and muscle aches, much like the ‘flu. If you experience any of these symptoms, you should inform your renal unit immediately. During this time your blood results will show a rise in creatinine and urea.

Rejection episodes are periodic. They occur most commonly in the first 7 - 14 days after transplantation. Very occasionally, dialysis may be needed until the rejection subsides.

When rejection occurs, it is treated with extra immunosuppressants, given intravenously. Other medications may be changed and a restriction on fluid and food types may be required.

Are there any problems with using immunosuppressant drugs?

The suppression of the body’s immune system allows viral diseases that you may have caught a long time ago to reactivate and cause illness again. These viruses can make you feel quite unwell and in the early stages may be very similar to kidney rejection. These viruses include cytomegalovirus (CMV), usually a ‘flu-like illness that most of us shrug off without ever knowing we have had it, Epstein-Barr virus that causes glandular fever and herpes simplex (cold sores & genital herpes) and herpes zoster (chicken pox & shingles). These viruses are treatable.

Sometimes people catch these viruses from the donor kidney. It is usually considered that a transplanted organ that is known to have CMV, for example, is better than not having a transplant because it is possible to treat these viruses.

Other problems related to immunosuppression e.g. catching infections from others, skin care, gum care, vaccination and pregnancy are discussed below.

What happens to my old dialysis access?

Haemodialysis access – your fistula will usually be left alone after the transplant, although they usually clot after a while if they are not used. Should this happen, do not worry but please inform your doctor at your next clinic appointment.

If you have a permacath, this will be removed, under local anaesthetic, once it is clear that your new kidney is working satisfactorily.

Peritoneal dialysis access – if you have a Tenckhoff line, it will be shortened prior to discharge, and providing you have no problems, it will be removed between 3 and 6 months post-transplant. Equally, your PD fluid stocks will be removed once it is clear that your new kidney is working satisfactorily.

You must continue your exit site care until the Tenckhoff is removed.

When do I go home?

You will, hopefully, be ready to leave hospital between 10 and 14 days after your surgery. Some people may take longer to recover and if you should have any problems then it may be necessary to stay in hospital until these are remedied.

What do I do when I get home?

the first few weeks

Although you may have been feeling quite well and active during the last few days of hospitalisation, it is usual to feel quite tired once you get home. Once at home there are a few things that you are advised not to do. You should not drive for 6 weeks after your operation. Your insurance is unlikely to cover you to drive during this period. If you have any queries, please ask before you leave the unit or whilst in outpatients. There are a few other restrictions you should observe until the wound has had time to heal. These include lifting heavy objects, swimming or anything that is really strenuous. However, over time you should feel ready to become more active. Please, ask the doctors that you see in clinic for advice.

It is important particularly in the early days to be careful of coming into contact with anyone with coughs, colds or infectious diseases. If you have been exposed to any infections inform your renal unit.

What after-care is provided?

It takes about 6 months to a year for your transplant to settle down. During this time you will be closely monitored and followed up, in the first six months by your surgeon and then after that by one of the consultant transplant physicians and their team.

You will require regular outpatient appointments, several times a week initially, until your blood results have stabilised. It is a time when the doctors will be tailoring your drugs to suit you in order to find a reasonably stable, maintenance regime.

On clinic days, you will be asked to omit your morning immunosuppressant drugs – Neoral or Tacrolimus – and, instead, bring it with you to clinic to take after your blood tests. Depending on the test results your drug dosages may be altered. On some clinic days you may be asked to bring in a 24 hour urine collection which you should start the morning before clinic.

There will be minor setbacks and problems with most transplants as everybody reacts differently to the combination of essential drugs. At these times you will need to be followed up more closely than usual. You may also be asked to come in for investigations. Do not be alarmed as many are routine.

What else do I need to be aware of after transplant?

infections

Following your transplant, you will be more at risk of picking up infections. This is due to the immunosuppressant drugs. They prevent rejection but also reduce your ability to fight infection.

It is important to avoid any childhood diseases that you are not already immune to, such as chicken pox, measles, etc. Contact your doctor if you do come into contact with a disease of this type.

diet

You will be seen by the dietitian before you leave hospital after the transplant. This is because now that you are free to eat and drink whatever you want to, perhaps for the first time in years, you may experience sudden weight gain. Initially you may have flesh weight to regain after a period on dialysis, but it will soon become obvious if you start to put on weight.

Eating sensibly, keeping to low-fat foods, fresh fruit and vegetables and avoiding too much sugar and salt in your food can help you to keep fit and your weight steady.

skin care

Transplant patients on immunosuppressant medication should avoid direct exposure to sunlight. This is to reduce the risk of abnormal changes to the skin which could potentially become cancerous. A high factor sun protection cream should be used ( at least factor 20), a hat worn, particularly if your hair is thinning and clothing used to cover-up as much as possible if exposure is unavoidable. If you have moles on your skin, check them regularly for bleeding or changes in shape and/or colour.

Female transplant patients should check their breasts and have cervical smears regularly.

gum care

Some patients on immunosuppressants find that their gums can become swollen and sore. It is very important to look after your teeth and gums both before and after transplant. Make sure that you are registered with and visit a dentist regularly who will be able to help you with these problems.

vaccinations

If you are going on holiday or need a vaccination for any purpose, please check with your renal unit or your consultant. You must not take any ‘live attenuated’ vaccines because your immune system is suppressed.

sex

You can resume sexual activity whenever you feel ready. After transplant, many people feel a return of their sex drive and energy. Women of child bearing age recover normal menstrual cycles and fertility. Both men and women need to be aware of birth control issues and plan contraception if necessary. The pill and intra-uterine devices (IUD) may not be appropriate and barrier methods are recommended initially. You can discuss these issues with your nurse or doctor.

Some male patients may have suffered impotence during their time on dialysis or due to medication such as anti-hypertensive drugs. This may improve and can be discussed with medical staff or an appropriate counsellor.

pregnancy

It may be possible for women who are of childbearing age to become pregnant following a transplant. You would be advised to delay trying to become pregnant until your transplant has had an opportunity to settle down. We would recommend that if you wish to become pregnant that you discuss this first with your transplant consultant who will be able to advise you on any of the risks associated with the medication you are taking.

Financial help

If you are claiming benefit, you must notify the DSS attendance unit at Warbreck House, Warbreck Hill, Blackpool of the change in your circumstances. Please contact the social worker for further advice.

If you need financial assistance for travel to and from the hospital for appointments, please ask your social worker who can provide the forms and assist with supporting your claim

Transport

When you attend outpatient appointments, hospital transport provided by South & East Wales Ambulance Trust will be provided for all your appointments for the first 3 months after transplant if you wish. After that time, provided you are well enough and able to make your way to hospital independently, you should not expect to have ambulance transport booked for you.

May I contact the donor’s family?

The families of cadaveric donors are offered anonymity. It is, however, possible for the transplant co-ordinators to pass a letter from you if you wish to express your gratitude for the gift of a transplant that you have received. If you would like further information about this following your transplant, please contact the transplant co-ordinators.


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