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«Introduction 04 Kidney transplantation 05 Before the transplant 11 The kidney transplant operation 14 Going into hospital 24 Transplant medications ...»

-- [ Page 1 ] --

Your guide

to kidney



Introduction 04

Kidney transplantation 05

Before the transplant 11

The kidney transplant operation 14

Going into hospital 24

Transplant medications 31

Going home 46

More information, contact details

and support services 57


Do you have chronic kidney disease (CKD)?

Are you a patient at King’s College Hospital NHS Foundation Trust or Guy’s and St Thomas’ NHS Foundation Trust (referred to in this booklet as King’s and Guy’s)?

Are you thinking about having a kidney transplant?

Do you want to know more about the operation?

Do you want to know more about how a transplant will affect your lifestyle?

If the answer is yes to any of the above then this booklet is for you.

3 This booklet has been put together by staff and patients at King’s and Guy’s hospitals. It aims to answer some of your questions about having a kidney transplant.

You will also have opportunities to ask questions and to discuss any of your concerns about transplantation with doctors, nurses and other healthcare professionals. Please let staff know if there is anything you do not understand.

4 Kidney transplantation 5 Kidney transplantation Not all patients are suitable to have a transplant. For those people who are suitable a transplant will, in most cases, give you a better quality of life than dialysis. Your kidney team will discuss transplantation with you during your clinic visits. You may need to have several tests and medical examinations to help decide whether you are suitable for a transplant.

These tests and medical examinations are important, as the results help your kidney doctor and transplant surgeon know whether you are in good health and what the risks are to you of the transplant procedure. We will share and discuss all test results, medical examination results and potential risks with you. If the risk to you is thought to be too high you will be advised not to have a kidney transplant.

You will not be put into the transplant waiting pool or put forward for a living donor kidney transplant until you have been assessed as being suitable by one of our transplant surgeons.

How are kidneys donated?

Listed below are the different ways in which kidneys can be donated. The person giving the kidney is called the donor. The person receiving the kidney is called the recipient.

6 Deceased donor transplant A deceased donor kidney (previously called a cadaveric kidney) comes from someone who has died. There is a national pool of people waiting for this type of transplant. You can find out more in the leaflet ‘Understanding the kidney transplant pool’. Please ask a member of your kidney team for a copy.

Living donor transplant Most people can live a normal life with only one kidney. Some choose to donate one of their kidneys to a family member or a friend. This is called living kidney donation. You can find out more in the DVD ‘Making the gift of life’. Please ask for a copy.

Paired and pooled kidney donation If a family member or friend would like to donate a kidney to you, ideally they should be compatible with you in terms of blood group and tissue type. If they are not this is known as an ‘incompatible’ or ‘mismatched’ transplant. If the person still wants to donate and is healthy you could be paired with another incompatible donor and recipient in the same situation so that each donor can donate their kidney to the other donor’s recipient. This is known as a kidney exchange or “kidney swap”. Each recipient benefits from a compatible transplant that he or she would not otherwise have had.

When more than two pairs are involved in the swap it is known as pooled kidney donation.

–  –  –

The UK Blood and Transplant service organise paired and pooled kidney donation. For more information visit www.organdonation.nhs.uk Altruistic donation This is where a person volunteers to donate a kidney to an unknown recipient. The benefit of this type of donation is that a person in the transplant waiting pool receives a living donor kidney and the number of patients waiting in the pool is reduced. This increases everyone’s chances of receiving a kidney.

ABO and HLA incompatible transplantation An ABO (blood group) incompatible transplant takes place between a living donor and a recipient with a different blood group.

An HLA (Human Leukocyte Antigen) incompatible transplant takes place between a living donor and a recipient who has a different tissue type.

8 It has only recently become possible to do these types of transplants. For the donor the process is the same as for an ordinary transplant but the recipient may need to have different treatments or stronger medications to reduce the risk of transplant rejection. If you would like to know more about this kind of transplant please talk to your transplant team.

Kidney and pancreas transplantation This may be an option if you have diabetes and kidney failure. There

are two options for a kidney and pancreas transplant:

1) A simultaneous pancreas and kidney transplant (SPK).

Both organs come from the same deceased donor and are transplanted during the same operation.

2) A pancreas after kidney transplant (PAK). You first receive a kidney from a living kidney donor. Several months later you go into the waiting pool for a pancreas from a deceased donor. The wait for a pancreas transplant is about six months.

–  –  –

For some patients, it may be more appropriate just to transplant the islet cells rather than the whole pancreas, although this may not completely remove the need for insulin. The transplant team will discuss these options with you.

10 Before the transplant 11 Should I stop smoking?

Yes! We ask patients who are waiting for a kidney transplant to stop smoking. Smoking harms your heart and increases your risk of developing several types of cancer, lung disease and heart disease. Stopping smoking at any age will improve your health and may increase your life expectancy. Please ask for

advice on how to stop smoking from:

• your GP

• your kidney team

• the NHS Smoking Helpline 0800 022 4 332

• Guy’s stop smoking service 020 7188 0995

• King’s stop smoking service 020 7188 7188 ext 52847.

–  –  –

12 We encourage you to lose weight if your BMI is greater than 30.

King’s and Guy’s both run weight management clinics for kidney patients where you can get advice on how to lose weight and exercise safely. Once you have lost enough weight you will then have tests and medical examinations to assess if you are suitable for a transplant. You can calculate your BMI using BMI calculators which are available on the internet or in healthy eating booklets.

Can I continue to exercise?

Yes, although there may be some restrictions if you are on dialysis.

While you are waiting for a transplant it is important that you stay healthy. Ask your healthcare team for more information.

Can I go on holiday?

While you are waiting for a transplant it is important that you let your healthcare team know if you are thinking about travelling outside the UK. You will be suspended from the transplant pool if you go abroad. If you receive haemodialysis outside the European Union you will remain suspended for three months following your return to the UK. This is to make sure you have not been exposed to any infections during your dialysis treatments abroad.

Can I have vaccinations for my holiday?

Before having a kidney transplant you can have travel vaccination as advised by your GP but your body may not be able to respond fully to the vaccines, so you should always take extra precautions. Please ask for advice from your kidney doctor or nurse.

13 The kidney transplant operation

14 What happens during the kidney transplant operation?

A kidney transplant generally takes two to four hours. A kidney and pancreas transplant generally takes five to six hours. The new kidney will be put into the left or right groin. Your own kidneys are not usually removed during the operation.

–  –  –

16 Occasionally, both kidneys from a deceased donor are transplanted into a single recipient. This is called a double kidney transplant. This will be done if the transplant surgeons and kidney doctors think that transplanting just one kidney would not work well enough for you, usually because the donor is an older person. This will be discussed with you when you come in to hospital.

Can I have another transplant if this fails?

Sometimes a kidney transplant fails. If this happens another transplant will be considered if you are fit or healthy enough. If your transplant fails you might need to have an operation to remove the failed kidney. The success rate for second and third transplants is generally as good as for the first, but you are likely to have a longer wait. You will also need to go through the same tests again to make sure you are fit and healthy enough to have another transplant.

Transplant advantages and disadvantages Statistically, patients who have had a kidney transplant are likely to live longer than those who remain on dialysis. But having a transplant is not completely without risk. Some of the benefits and

risks are listed below:

–  –  –

• You will no longer have to restrict how much fluid you have or follow a special diet. But you should continue to eat healthily.

• You should feel more energetic and be better able to cope with your everyday life, your job or your studies. A lot of patients can return to full-time employment.

• If you are a woman of childbearing age your fertility is likely to improve - women on dialysis are generally infertile. Your sex life is also likely to improve.

• If you have a kidney and pancreas transplant it usually means you will no longer need to take insulin if you have diabetes.

• Having a transplant will mean fewer restrictions on your life, for example greater freedom to travel.

• You are likely to live longer with a transplant than with dialysis.

18 What are the risks of transplantation?

All medical and surgical treatments have risks. Although a transplant is likely to increase your quality of life, problems can occur. These problems (also called complications) can occur soon after the transplant, or later on. If you become unwell and are admitted to your local hospital, which may not have a dedicated transplant team, we would advise that you or your relative informs the Guy’s transplant team so we can provide specialist advice.

Telephone: 020 7188 5664, Monday – Friday 9am – 5pm, at all other times Telephone: 020 7188 7188 and ask for the renal doctor on call.

Early complications

• The kidney may not work straight away. If this happens, you may need dialysis until it begins to work. This may be days, or sometimes weeks after the transplant. Kidneys from living donors almost always work immediately. Kidneys from deceased donors have about a 50:50 chance of working straight away. If the kidney does not work immediately, you will have regular scans and sometimes biopsies to make sure that other problems such as rejection have not occurred.

• Sometimes the kidney transplant never works. This is rare (two five cases out of a hundred transplants).

–  –  –

• Rejection is one of the most important risks and this occurs because your immune system recognises the transplanted organ as foreign. To prevent this happening you must always take your prescribed anti-rejection medications as directed by your transplant team. These anti-rejection medications are also known as immunosuppressants.

• You will have a higher risk of infection following transplantation.

This happens because the anti-rejection medications lower your immune system. The anti-rejection medications do however prevent your body rejecting your new kidney so without them it may stop working. Your transplant team will monitor you closely to reduce your risk of infection. It is important to continue taking all of your anti-rejection medications despite this risk.

• A pancreas transplant is a longer, more complex operation than having a kidney transplant. About one in three patients who have a pancreas transplant need more surgery soon after the transplant. This might be for bleeding, infections around the pancreas, or for bowel problems.

20 Later complications

• If you take steroids (prednisolone) long-term you have an increased risk of osteoporosis. This is a condition where your bones become more fragile. As a result they are more likely to break. Your transplant team will refer you for a bone scan every few years to check the thickness of your bones. This scan is known as a DEXA (dual energy x-ray absorptiometry) scan and you must not miss this appointment.

• A condition called New Onset Diabetes After Transplantation (NODAT) occurs in up to one in five patients in the first year after kidney transplantation. This is a result of the anti-rejection medications and is long term. This is usually treated by diet; some people are referred to a specialist diabetes clinic.

• You will have a higher risk of skin cancer following your transplant because of the medications you need to take. This can be reduced by taking the following precautions before and after your transplant. Other side effects of medications can be found in the Transplant Medications section of this booklet (page 31), together with practical advice on skin care.

–  –  –

• Avoid direct sunlight on the skin. Always wear sun cream with a high sun protection factor (SPF) - at least 25-30 - when outside between March and October and when travelling in hot countries.

• You will also have a small increase in the risk of getting other types of cancers such as lymph or cervical cancer. It is very important that women have a cervical smear test every three years. Your transplant team will remind you and your GP to arrange this. You must tell the team if you experience any unusual symptoms.

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