Kidney transplant guide - information for patients after a kidney transplant

Introduction

This booklet has been written for patients who have received a kidney transplant at Addenbrooke’s hospital. It provides information about the kidney transplant operation and the recovery period. The aim is to help you and your family/carer become more aware of what to do to keep yourself and your transplanted kidney in good health, and also what to do if you think you have a problem.

Below is a list of useful contact numbers for the Cambridge Transplant Centre. These are mostly automated, so please leave a message with your contact details. Alternatively you can send us a message via MyChart. Please ask your coordinator if you are not already signed up to this service.

Renal transplant specialist nurse team: 01223 274637 or 01223 348031
Email the Renal transplant specialist nurse team
08:00 – 16:00, Monday to Friday

Pancreas transplant coordinator: 01223 216536
Email the Pancrease transplant coordinator
16:00 – 08:00
Weekends for urgent telephone advice only: Transplant ward, Addenbrooke’s hospital, Cambridge
Telephone: 01223 217711

Outpatient clinic enquiries, Clinic 12 Telephone: 01223 274900

Transplant pharmacy team: Telephone: 01223 254934
Email the Transplant pharmacy team

Addenbrooke’s hospital switchboard: 01223 24515

The kidney transplant operation

The transplanted kidney is usually placed in either the right or left groin area, as illustrated. It is placed here as it is close to your bladder. Normally your own kidneys are not removed unless there is a reason to do so. As a result, you will end up with three kidneys (your own ‘native’ kidneys and the transplanted one).

The operation requires the surgeon to join up your blood vessels to those of the transplanted kidney. The urine tube (ureter) that will drain the urine from the transplanted kidney will be connected to your bladder.

If you have a peritoneal dialysis catheter this will be removed at the time of the transplant operation.

During the transplant you will also have a small plastic tube (ureteric stent) placed between your transplanted kidney and your bladder to help maintain the flow of urine. The stent will be removed after six weeks, this is a quick procedure using a local anaesthetic and usually takes place in the clinic.

After the operation

After the kidney transplant has been carried out you will usually return to the transplant ward. Sometimes it may be necessary for you to be looked after in the intensive care unit or high dependency unit for a day or two, depending on your recovery from the operation. The nursing staff will make sure that you are comfortable and will monitor your transplanted kidney to make sure it is working well.

When you wake up you will notice that you have a number of different plastic tubes in your body, the most common ones will be:

• A tube in your neck to help us to give you fluids and give you temporary dialysis if required.
• A small tube in your hand or arm to give you medications and pain relief.
• A plastic drain tube in your abdomen to help drain away any blood and fluid from the operation.
• A urinary catheter, a tube which passes up your urethra into the bladder, to help us monitor your urine output.

Most of these tubes should be removed after two to three days. The urinary catheter will remain for five days to allow the internal stitches to heal.

Recovery from the operation

Eating and drinking is usually encouraged as little as six hours after the operation. Whilst you are in hospital, your transplant nurse will encourage you to record everything you drink and measure the urine you pass, even after your urinary catheter has been removed. This will help us to check how well your transplanted kidney is working.

On the first day after your operation your nurses or physiotherapist will help you out to your chair for a few hours where you will be taught how to carry out deep breathing exercises. You will be encouraged to be mobile around the ward as soon as possible as this will help speed up your recovery and reduce your chances of getting a chest infection or a blood clot in the leg. You are likely to be in hospital for six to ten days following a kidney transplant. However this could be longer depending on your condition and your recovery.

Following discharge you will be seen in the outpatient clinic very regularly, twice a week to start with. After a period of time these clinic visits will alternate between a telephone clinic and face to face (F2F) visits.

Although you should be able to take a shower after your operation the specialist nurse in clinic will advise you about when you are able to resume taking baths and the use of creams/oils to aid healing.

Wound care

There are three different ways used to close the wound after your transplant operation:

• Staples: these will be removed in clinic three weeks after your operation.
• Glue: this will eventually dissolve. For the first few weeks, try and keep the wound area as dry as possible when showering and avoid long hot baths.
• Stitching: your surgeon will advise you if these are dissolvable or require removing in clinic.

One of the transplant specialist nurses will look at your wound when you come to your clinic appointment to ensure that it is healing. If it is not healing sufficiently, we may want to use a special type of dressing, this is called VAC therapy. The specialist nurse will explain this system to you fully, should you require it.

Complications associated with kidney transplantation

Going home

Below is a checklist of items you need to take home with you:

• A supply of your prescribed medication. This will be arranged by the transplant pharmacy team before you leave.
• A list of your medication including their names, doses and how often they should be taken.
• A clinic appointment (ensure you have transport booked if required).
• A white topped urine specimen bottle labelled with your name and hospital number to bring to your next appointment.

When you get home

Once you have been discharged home it is important that you are aware when you should seek medical advice. You should contact your transplant team or the ward for urgent medical advice if you think you have suddenly developed one of the following in the first few weeks after your transplant:

• abdominal pain that is not controlled by your pain relief
• reduced urine output
• blood in your urine
• bleeding
• fevers or a raised temperature of 38°C or above
• diarrhoea and/or vomiting for more than 24 hours
• chest pain
• difficulty breathing
• swelling in the face, stomach or legs.

If you are unsure and cannot get over the phone advice, please phone NHS emergency and urgent care services on 111 or attend your local accident and emergency department.

Medications after transplant

Before you are discharged from hospital the transplant pharmacy team will go through your new medications with you, giving you information on what to take, when to take it and why you need to take it. If you require any advice or have a concern about your new medications you can email the transplant pharmacy team or call them on 01223 254934.

Non-prescribed medication

Ideally you should avoid using non-prescribed medication, such as recreational drugs, herbal medicines or remedies, diet and beauty pills/medicines, and body building drugs. These types of medicines have been known to cause irreversible kidney damage. Many of them may also interfere with your anti-rejection medications and could make your anti-rejection medication less effective or cause side-effects. However, if you do wish to take them, please be honest with your transplant team and check with us before taking them. We need to try to keep you safe.

Clinic arrangements

Following discharge from hospital you need to attend regular transplant clinics in the outpatients department at Addenbrooke’s Hospital. For the first few weeks it is very important that we see you twice a week to make sure both you and your transplanted kidney are OK. Over time these clinic appointments will become less frequent and will alternate between face to face visits and telephone clinics. Before you leave hospital the ward will make your first clinic appointment for you. When attending clinics please remember:

• Do not take your morning dose of tacrolimus or ciclosporin on your clinic days until you have had your blood test. Ensure that you bring the dose with you to clinic so that you can take it as soon as you have had your bloods taken.
• Bring an up to date list of your medications with you.
• Make sure you have an appointment for your next clinic before you leave.

If you are unable to attend the clinic for any reason, please inform the clinic using the contact information at the front of this booklet.

If you were referred from the dialysis centres in Basildon, Ipswich, Norwich, Stevenage (Lister), Peterborough, Chelmsford (Broomfield), Kings Lynn or Jersey you will normally be referred back to your local hospital three to six months after your transplant operation. Once you’re referred back your anti-rejection medication supply needs to come from the local hospital you are seen at.

Stent removal

About six weeks after your transplant you will receive an afternoon clinic appointment, this will coincide with one of your regular clinic appointments, to attend Addenbrooke’s for your stent removal. It is a simple procedure performed using a local anaesthetic.

During the stent removal, the transplant surgeon will gently insert a local anaesthetic jelly into your urethra. This will numb and lubricate the area enabling the smooth passage of the cystoscope (bladder telescope). The stent will then be removed, during which you may briefly feel some discomfort or pressure. The procedure takes about 15 minutes. Make sure that you drink plenty of water afterwards, as this helps to flush out the bladder. If you have any questions or want to discuss the procedure further, then talk to the transplant nurse or doctors before you are discharged.

Your health after a kidney transplant

Feel fit and enjoy life!

Before your transplant you may have felt too weak and tired to exercise. Many transplant patients find that after they have recovered from the surgery, they have more energy and are eager to increase their level of activity. Once you have been discharged from hospital we encourage you to gradually increase the amount of exercise you take without allowing yourself to become too tired. To avoid developing potential complications please follow the following advice carefully:

• Avoid lifting heavy weights for at least six weeks, gradually increasing the weight you can carry.
• Avoid repetitive tasks such as vacuuming or mowing the lawn for the first six weeks.
• Avoid the temptation to become stooped over your wound, worsening your posture and increasing the risk of back pain.
• Gradually improve your exercise tolerance in order to avoid the complications associated with poor levels of fitness.
• Extreme athletic exercise should be avoided for twelve weeks.
• The only sports to avoid are those where you might get a direct blow to the kidney, for example rugby, boxing or martial arts.

Although your ability to exercise will depend on you as an individual, regular exercise is important for your general health and wellbeing. Incorporating 30 minutes of physical activity in your daily routine will:

• lower your risk of developing diabetes following a transplant
• help to keep your weight down
• help prevent other health problems, such as high blood pressure and heart disease.

Exercise classes and gym memberships can provide a structured environment to exercise, however daily activity does not need to be expensive. Consider simple things that you can do every day:

• try parking further away from work or other destinations to increase the distance you need to walk
• cycle to work, rather than drive
• climb the stairs instead of taking the lift

Remember - all activity counts!

Vaccines

The information below outlines some of the vaccines you can and can’t have. For vaccines not covered below please speak to the transplant team before getting them.

Safe vaccines (inactivated)

• Influenza vaccine (yearly)
• Inactivated Covid vaccines
• Pneumococcal vaccine
• Tetanus vaccine
• Inactivated shingles vaccine (Shinarix)
• Rabies vaccine
• Inactivated polio vaccine (in a combination product)
• Polysaccharide typhoid vaccine (Typhium Vi)

Unsafe vaccines (live)

Please note: this is not exhaustive. Please always check.

• Live influenza vaccine (Fluenz Tetra)
• Measles, Mumps and Rubella vaccine (Priorix, MMRVaxPro)
• Rotavirus vaccine (Rotarix)*
• Shingles vaccine (Zostavax)
• BCG vaccine
• Oral typhoid vaccine
• Varicella vaccine (Varilrix, Varilvax)
• Oral polio vaccine (only used for outbreaks)
• Yellow Fever Vaccine

Foreign travel

If you are planning on travelling abroad it is essential that you follow our advice to minimise the risk to yourself and your transplanted kidney.

Infections

Your anti-rejection medication will make you more prone to picking up infections while abroad. You can reduce the risk of getting these infections by following simple advice such as:

• avoiding drinking tap water (including ice cubes)
• increasing your daily fluid intake if in a hot climate
• ensuring the food that you eat is cooked properly
• avoiding salads and other raw fruits and vegetables that have been washed in tap water
• avoiding swimming in areas, such as rivers or seas, that do not have their water quality checked regularly or are known to have waterborne diseases/parasites.

When planning a trip abroad you need to check well in advance which vaccinations are required, as you must not receive live vaccines whilst taking anti-rejection medication. This is because a live vaccine given to an immunosuppressed person can cause the disease it is trying to protect against, this can cause serious illness and has resulted in death.

Dietary advice following your kidney transplant

While you are in hospital or during your clinic visits you will be seen by a dietitian who will advise you on your specific dietary needs. One of the great benefits of a successful kidney transplant is that you can enjoy a more varied diet. However, during the early stages after the transplant operation you may be advised to continue restricting certain foods until your new kidney is working properly.

Food hygiene

It is important, during the first three to six months after a transplant whilst you are on higher doses of anti-rejection medication, that you avoid eating foods that may cause food borne infections such as listeria, salmonella, E. coli and Hepatitis E. Examples of such foods include unpasteurised cheese, milk or yoghurt, and raw/undercooked meats, fish and eggs. Your dietitian will go through this in more detail with you and discuss any dietary specific questions that you may have.

Salt

You should continue to follow a no added salt diet to help prevent high blood pressure.

Particular Fruit

You should avoid having grapefruit/ grapefruit juice, pomegranates, pomelo and Seville oranges because they interfere with the level of anti-rejection medication in your blood.

Calcium and vitamin D

Transplant patients can be at a higher risk of developing weak bones (osteoporosis) which can break more easily than normal. Adequate vitamin D and calcium in your diet can help lower the risks of breaks (fractures). Good sources of calcium include dairy products such as milk, cheese and yogurts; fish with bones, eg sardines or tinned salmon; green leafy vegetables, for example broccoli; and dried fruit, nuts and seeds. Exposure to sunlight is our main source of vitamin D, but as a transplant patient you are recommended to take protection from the sun. Instead try to include good dietary sources of vitamin D, such as oily fish e.g. sardines or mackerel; cooked eggs, margarines, and fortified breakfast cereals.

Healthy diet and weight gain in the long term

You should now be able to enjoy a much greater variety of foods since you no longer have the dietary restrictions needed when you were on dialysis. After you have recovered from your transplant the advice is to follow a general healthy eating diet for good weight control and overall health, which is the same as the rest of the population. Your dietitian will cover this in more detail if you are concerned about your weight and will discuss your dietary needs on a more individual basis.

Further information

If you have any queries, please do not hesitate to contact your dietitian in the department of nutrition and dietetics on 01223 216655.

Thanking your donor family

You may wish to find out a little bit about your donor. To ensure confidentiality of the donor family is maintained we are only able to tell you their approximate age and gender. In time, you may wish to write a letter to your donor’s family. The decision to write to your donor’s family is a personal choice. It may be the most difficult letter you have had to write. However, it may help you to know that nearly all donor families express appreciation for the cards and letters that they receive from recipients and their families, and occasionally they will write a reply. If you do decide to write a letter or card the following suggestions may help you:

• use your first name only
• mention your family or friends
• mention your hobbies or interests
• write about how your lifestyle was affected by kidney failure and its treatment
• say how long you waited for your transplant
• explain the benefit of transplantation for your lifestyle and health
• show how much this means to you and your family or friends
• you may wish to thank your donor’s family for the unique gift they have given you
• try to keep the language simple and sincere
• be aware that your donor’s family freely decided to donate their loved one’s organs to benefit others
• do not mention what area you live in or your hospital
• All letters should be sent to your recipient transplant coordinator for forwarding to the donor family. This is a confidential service.

Advice and support

Following your kidney transplant, you may find the following support services offered by Addenbrooke’s Hospital useful:

Addenbrooke’s renal counsellors

Our renal counsellor team are available to offer help and support to those in need of emotional and psychological support when coming to terms with renal failure and kidney transplantation. They can be contacted on 01223 400186 or by email:

• Email Gillian Chumble
• Email Alison Carnegie

Addenbrooke’s renal social care practitioner

The renal social care practitioner can offer advice on benefits, financial support and housing issues after kidney transplantation. They can be contacted on 01223 400186 or via email:

• Email Jane Rozier

Addenbrooke’s patient advice and liaison service (PALS)

The PALS holds regular sessions with the Citizens Advice Bureau. For further information you can contact the PALS office on: 01223 216756 or 01223 257257 or email PALS.

Transplant unit patient support group

This is an opportunity for patients to get together and learn from one another by sharing experiences. It takes place most weeks in the day room on the transplant ward. The patient support group is open to all inpatients and relatives. More information can be obtained from Addenbrooke’s chaplaincy and multi-faith community (Telephone: 01223 217769).

Other external support groups

British Kidney Patients Association Facebook page (opens in a new tab)

Transplant Patients’ Trust of Great Britain (opens in a new tab)

National Kidney Patients’ Federation (opens in a new tab)

About this leaflet

‘Information for patients after a kidney transplant’ is written with contributions and advice from many members of your renal transplant team and from patients and their families. This document is designed to be continuously updated to include the most up-to-date advice. Whatever your role in kidney transplantation, if you are reading this text, your comments and suggestions for improvements to this document are very welcome.

Privacy and dignity

Same sex bays and bathrooms are offered in all wards except critical care and theatre recovery areas where the use of high-tech equipment and/or specialist one to one care is required. We are a smoke-free site: smoking will not be allowed anywhere on the hospital site. For advice and support in quitting, contact your GP or the free NHS stop smoking helpline on 0800 169 0 169.