Renal and transplant service Having a kidney transplant Information for patients, relatives and carers Contents Page number Should I have a kidney transplant? 2 What types of kidney transplant are there? 3 How do I get a transplant? 3 What blood tests will I need? 4 What medical investigations will I need? 4 What medical investigations will I need? 5 How does the national deceased donor waiting list work? 6 Pre-operation 8 The operation 8 Post operation 10 Medication after your transplant 11 Post-transplant follow up 14 General information post transplantation 15 Travel advice after transplantation 18 Useful contact information 20 Introduction This booklet has been provided to help answer some of the questions you or those who care for you may have. It is not meant to replace the consultation between you and your medical team, but aims to help you understand more about what you discussed together. Should I have a kidney transplant? A kidney transplant is the best treatment if you have end-stage kidney disease as it offers the most normal life. With a functioning kidney transplant, you will feel better, have more energy and live longer than if you are on dialysis. You will be less restricted in what you can eat and drink and where you can travel. At the Imperial College Renal and Transplant Centre, over 95 per cent of the kidneys we transplant work for at least a year. After five years, 80 per cent are working, and after ten years 60 per cent are working. Our success rates are increasing all the time. A kidney transplant may not be possible or even desirable for some people, for medical or personal reasons. There are benefits and risks with any treatment, and we will assess you to see if a transplant is the best treatment for you. If you are not sure whether a transplant is an option for you, please discuss it with your healthcare team. Are there any disadvantages in having a transplant? Unfortunately, a kidney transplant is not a cure for renal failure and you will still need to come to Hammersmith Hospital following your transplant. You will need frequent follow-up appointments to make sure you are recovering from your operation and the new kidney is working well. You will need to take immunosuppression medication for the rest of your life to stop your body rejecting the new kidney. This medication (also known as anti-rejection medication) works by lowering your immune system, so your body will not see the kidney as a foreign body and try to attack it. With a lower immune system, your body’s ability to fight infection is lowered and you may suffer from more infection. We will work with you to manage your medication so you keep well and your new kidney works as well as it can. Taking immunosuppression medication is crucial to the outcome of the transplanted kidney 2 What types of transplant are there? Kidneys can come from both deceased and living donors. A kidney from a person who has died will only be donated if they agreed to it before they died (registered or carried a card), or if their family agree to it after their death. Kidneys donated by deceased donors can be of two types: a heart-beating kidney where the donor’s heart has been kept beating artificially on a ventilating machine after their death – the machine keeps the oxygen supply circulating in the organs so the kidney has a blood supply for longer a non-heart-beating kidney where the donor’s heart has stopped beating – it is sometimes possible to use their organs if they have died in hospital and the operation can take place quickly. Kidneys donated from living donors can be: related - a blood relative within your family, such as your mum, dad, brother, sister, cousin or grandparent unrelated - from someone with whom the recipient has an emotional relationship, such as your wife, husband, partner or friend altruistic - from someone who has donated a kidney to someone in need who they don’t necessarily know. When can I have a transplant? It is usual to start thinking about a kidney transplant when your kidney function drops to less than 20 per cent (also described as when your estimated glomerulo-filtration rate (eGFR) is less than 20mls per minute) and declining. You can be registered as active on the national transplant waiting list six months before it is expected you will need dialysis. It is possible to be transplanted before dialysis, although this is more likely to occur if you have a living donor. If you do not have a living donor and are waiting for a deceased donor from the national waiting list, statistically there is an average waiting time of three to five years so it is less likely that you will have a pre-emptive deceased donor kidney transplant. If your blood group is AB or B you may have to wait longer as there are fewer suitable donors. How do I get a transplant? Please talk to us if you want to be considered for a transplant. We will talk it through with you and make sure you have all the information you need to be able to make the right decision. Remember, not everyone is suitable for a transplant. The operation and the medication needed afterwards may be too much of a risk for you, so we will need to assess your health, take into account your medical history and carry out further tests and investigations to see if a kidney transplant is a suitable option. 3 What blood tests will I need? Blood group We need to know what blood group you are so we can find a compatible transplant for you. There are four different blood groups: O, A, B and AB. If you are getting a kidney from a deceased donor, your blood groups must match as follows. Donor’s blood group Your blood group O A B AB O A or O B or O A, B, AB, or O It may be possible for the blood groups not to match if you are having a living donor transplant. This is called an ABO incompatible transplant. Please speak to your doctor, nurse or transplant coordinator if you think this may apply to you, so they can explain whether this is possible and what is involved. Tissue typing This blood test identifies the specific antigens or cell markers (genetics) that you have inherited from your parents and are therefore unique to you. Tissue typing is used to match a donor to a recipient. Antibody screening Antibodies are the proteins in your blood that detect and destroy invaders, such as bacteria and viruses. You can acquire antibodies from: blood transfusions previous transplants pregnancy Clotting screening Before you have an operation we need to check whether you have any problems with bleeding or clotting. This will not prevent you from having a transplant, but it will help us look after you safely during and after the operation. We also have to screen you for viruses, as this may affect the treatment you receive, which will include the following: Hepatitis B and C: a virus that affects the liver. If you have this, it may mean you need treatment before we can offer you a transplant and treatment afterwards. Human immunodeficiency virus (HIV): if there is a chance you have HIV we will offer you counselling first. 4 You can still have a transplant if you have HIV, but you will need special treatment to manage it. Cytomegalovirus (CMV): a flu-like illness that affects 80 per cent of adults Varicella Zoster virus (VZV): this is more commonly known as chicken pox Epstein Barr virus (EBV): this virus is associated with glandular fever What medical investigations will I need? heart and lungs: you will need an assessment to make sure you are fit for an operation under general anaesthetic. chest xray: this will show if you have any infection or abnormality in your heart or lungs electrocardiogram (ECG): this traces your heart to show its rhythm and rate, to exclude any abnormality or disease of your heart If you have diabetes or are over 50 we will refer you to a heart specialist (cardiologist), who will arranged various tests including a coronary angiogram. coronary angiogram: This is a special xray that gives us detailed pictures of the blood vessels to your heart. They do not show up on a normal xray, so we inject you with a special dye using a needle in your arm. Your blood vessels and their smaller branches will show up on the xray like a road map, which allows us to look for any narrowing of the vessels or heart disease that may need treating before your transplant. If you do need treatment, this could mean a delay before the transplant can take place. exercise tolerance test: This measures the function of your heart. We monitor its reaction to physical stress while you walk on a treadmill. We gradually increase the speed and incline to see the effects on your heart. It usually takes about 30 minutes, and you should wear comfortable shoes for walking. Are there any other tests? Depending on the cause of your kidney failure and your medical history, you may need other investigations such as: ultrasound: Ultrasound uses waves that are passed into the body. Some jelly will be put onto your body and a technician will place a probe on you, move it around and an image is seen on a monitor. computerised tomography (CT or CAT): This scanning technique uses advanced x-ray technology to take cross-section images of your body, called slices, which we would not see on regular x-rays. The scanner is like a big doughnut that your body passes through. Beforehand, we will inject a vein in your hand or arm with a special dye. magnetic resonance imaging (MRI scan): This scan assesses the blood vessels (aorta or iliac vessels) where the transplanted kidney will be attached into your body. It is a non-invasive procedure that uses powerful magnets and radio waves to provide computer-generated images of your body and is possible to take pictures from almost every angle. You will lie still, inside a large, cylinder-shaped magnet. doppler scan: Similar to an ultrasound, this scans your arteries and veins to assess the flow of your blood. 5 How do I get the results of my assessment tests? We will give you some results when you have the tests, but others will take longer to be reviewed. You will get them when you see your doctor or nurse in the renal clinic. How does the national deceased donor waiting list work? It is important to remember that this is a list of everyone waiting for a transplant. What is the consent form? Under the Data Protection Act (1998) we require you to sign a consent form before using and storing information about you, such as your name, date of birth, address and what organ you need. We will give you a leaflet explaining about data protection and the transplant waiting list. Will I be told when I am on the national transplant waiting list? You will be sent a letter and an information leaflet once you have registered. This will show your registration as being suspended or active. Active means you are actively waiting for a kidney and can be called at any time. You must tell us if you change your address and/or phone numbers. Every two months we will routinely test your cytotoxic antibody levels, so we know what your antibody status is. Please ask if you need more information about this. How are kidneys allocated? The National Blood and Transplant Organisation uses a computerised matching programme to allocate organs to the most suitable match. Based on blood group and tissue type, the most suitable recipient for each kidney is identified. In order to make the allocation as fair as possible, recipients are prioritised according to a points score as follows: time on waiting list tissue match and age age difference between donor and recipient location of donor to recipient rare or difficult to match recipients. Will my ethnicity or religion make a difference? Unfortunately, patients from an ethnic minority background may have to wait longer or a transplant. This is because you are more likely to have a rarer blood group and tissue type and is harder to find a good match. There are no religious objections to transplantation or kidney donation. But speak with your spiritual or religious leader if you have any concerns. What checks are made on the donor kidney like, infectious diseases? The donor’s blood is checked before their kidneys are offered for donation, to make sure they are free of viral and bacterial infections that could be transmitted to you. We screen for 6 HIV/AIDS, Hepatitis B and C. If there is any doubt at all we will not offer the kidney for transplantation. What is the transplant unit like? Our renal and transplant centre at Hammersmith Hospital opened in 2005 with four wards: Peters, Kerr, Hanfield Jones and De Wardener. Immediately after your operation you will be in the De Wardener ward, and after that you could be on one of the other wards. There is also a day unit where you will have your pre-transplant investigations. This is the Planned Investigation Unit (PIU). If I am waiting for a deceased donor transplant, how will I know when a kidney is available for me? When a kidney becomes available for you, a renal doctor will phone you to tell you to come to the hospital as soon as possible. This could be at any time, day or night, seven days a week, so you must be contactable at all times. Before the operation, we will ask you not to eat or drink anything. We will explain whether or not the kidney is a marginal donor. This could be one that belonged to someone older or who had health issues, which may affect the long-term outcome. You should consider in advance whether you would accept a marginal donor or not. It could affect waiting time, how you cope with dialysis and whether there is the possibility of a living donor in the near future. How quickly do I have to get to the hospital? The sooner you come to hospital the sooner we can start getting you ready for the operation. We will tell you how long you have got when we call – there is usually enough time to pack a bag and notify your family. A kidney can survive in ice for up to 48 hours, but ideally your operation should take place within 24 hours to give the transplant the best chance of working. We can’t arrange transport for you, so arrange for someone to bring you, or get a taxi. We don’t recommend you leave your car in the hospital car park as you will have to pay parking fees. What should I bring with me? • your current drugs, including insulin, EPO and any over-the-counter drugs • night clothes, dressing gown, slippers and toiletries • loose-fitting clothing and comfortable shoes • reading materials, music or DVD player (Please note, we are unable to secure your valuables) • a small amount of money What happens when I get to hospital? The ward nurses will greet you and explain the process to you. We will ask a series of questions about your personal details for the necessary admission documentation. 7 Sometimes there may not be a bed immediately available, but we will find one as soon as we can. We will do a physical examination and some blood tests to make sure you are well enough for the operation. We might take an antibody sample for a crossmatch (see below), and will also do an ECG and chest x-ray. What is a crossmatch? This extremely important test determines whether or not you can receive the transplant. We mix your antibody sample with blood from the donor to see if there is any reaction. It takes three to four hours and we need to know the results before we can do the transplant. If there is no reaction (known as a negative crossmatch) the kidney is compatible with you and the transplant can go ahead. If a reaction does occur, known as a positive crossmatch, it means that you have antibodies to the kidney and it is likely that your body will reject the kidney immediately. Sadly you cannot receive a deceased donor transplant if you have a positive crossmatch and you must return home and wait for another kidney. Pre-operation What preparation will I need immediately before the operation? While we wait for the results of the crossmatch, or if we already know the results are negative, the following processes will take place. You will: • be given dialysis if you are already on this • have a shower and put on a gown • be assessed by an anaesthetist and by the surgical team • sign a consent form • start some immunosuppressant (anti-rejection) medication • go to the operating theatre. What if I am having a kidney from a living donor? You and your donor will have a planned work-up schedule leading to the operation. Initially you and potential donor(s) will have had tissue typing and matching blood tests. Once you are fully ready for transplantation, your donor will then undergo their full work up. Once they are successfully completed, a date for the operation will be arranged with your donor and yourself, unlike a transplant from a deceased donor which is unplanned. It is sometimes possible for the transplant to proceed with a positive crossmatch but a special treatment process (plasma exchange) will be required before the operation can go ahead. Your doctor or transplant coordinator will explain this in more detail. 8 What happens in the operation? We give you a general anaesthetic with the type of pain relief that is most suitable for you. We will then place the new kidney in one side of your lower abdomen (see image). We connect the blood supply of the new kidney to your own blood vessels. We then join the new kidney’s outflow tube (the ureter) to your bladder, with a thin hollow tube (a stent) that keeps it open and allows the connection to heal. This is all done through one cut in your abdomen. What will the wound look like? It will be the shape of a hockey stick and have either staples (clips) or stitches (sutures) closing the skin. We will remove these in the transplant clinic around three weeks after the operation. What will happen to my own kidneys? We will not remove your own kidneys. They will remain inside you while the new kidney takes over their work. If there is any medical or surgical reason for removing one or both of your kidneys this will have been discussed and arranged prior to your transplant - this only occurs on rare occasions. How long will the transplant take? The operation takes between one and two hours, but it is normal to be away from the ward for four or more hours. Will the transplant kidney work immediately? Your new kidney may work as soon as the blood supply is connected and even produce urine during the operation. A more accurate assessment of its function is made from blood tests. Some kidney transplants take several days to work and may be described as sleeping during this time (known as delayed graft function). Around 95% of kidneys from living donors work immediately. Those from deceased donors may take longer to wake up as they have had no blood supply for a longer time. Will I have tubes, drains and drips when I wake up? When you wake up, you will probably find you have: a facemask or nasal tubes to give you oxygen a probe on your finger to measure the oxygen in your blood 9 a blood pressure cuff on your arm ECG leads on your chest a small tube (central line) in your neck for two or three days to give you intravenous fluids to keep your kidney hydrated until you can drink, or to give you medication a patient-controlled analgesia pump (PCA) that allows you to give yourself painkillers whenever you need them without having to wait for an injection a urinary catheter in your bladder, this allows your bladder to rest after surgery and is usually removed after three days - it also measures your urine output a wound drain to collect excess fluid around your new kidney, which is removed after three days a stent inside the ureter of your new kidney, which we will remove under local anaesthetic later. Post operation What happens after the operation? Immediately after the operation we will monitor you closely on our high dependency unit, the De Wardener ward. To assess the functioning of the new kidney and help recovery, you will need: a chest x-ray an ultrasound of your new kidney to check its blood supply regular blood tests to check the kidney is working to have nothing to eat or drink until your bowels start to work, and then follow a light diet to get out of bed as soon as you can to prevent any complications of surgery, such as a chest infection or deep vein thrombosis (DVT). If your new kidney is slow to start working you may need dialysis. Once you are stable you will be able to move into one of our other renal wards. How many visitors can I have? In the De Wardener high dependency ward you can only have up to two visitors at any one time. In the other wards you may be able to have more. Can they bring flowers and children? Unfortunately flowers are not allowed as the water in vases can breed bacteria. Children under 14 are not allowed in the De Wardener ward, but once you are up and about you may be able to leave the ward to see them in the hospital grounds and public areas. How long will I be in hospital? The average length of time is seven to 14 days. You will be able to go home once your kidney function is stable, when you can maintain your fluid balance and your drug levels have settled. 10 How long will it take to feel well? Some patients feel much better instantly. Others take longer, sometimes three to six months. When will I have my stent, peritoneal dialysis (PD) tube or haemodialysis (Tesio) line removed? After 12 weeks we will remove the stent from your kidney’s ureter. This is a surgical procedure done under local anaesthetic through your urethra. It can be a rather uncomfortable procedure. We will remove your PD tube at the time of the operation. We will remove your Tesio line before you go home, unless there is a complication meaning you might need it for a little longer. What happens when I go home? We will prepare you for going home by giving you the following: medication: (see below): our pharmacist will spend some time with you explaining the medications and their side effects, and will tell you where to get your repeat prescriptions advice: on weighing yourself and how much you should drink each day to keep your new kidney hydrated dressings: wound dressings so you can change them when soiled dietary advice: our specialist renal dietician will talk to you about all things diet related. What if I need help before my follow-up appointment? Your transplant follow-up appointments will be in the renal outpatients department on A block. If you feel unwell or need advice, contact: Renal outpatients call: 020 3313 3833 Renal assessment unit (RAU) call: 020 8313 6603 De Wardener ward (out of hours) call: 020 3313 6693 Medication after your transplant After your transplant you will have to take a number of new medicines including immunosuppressant medication. How do immunosuppressants work? Immunosuppressants, also known as ‘anti-rejection’ medicines, work by dampening down the effects of the body’s immune system. They help protect the transplanted kidney from being ‘attacked’ by your own immune system. You will have to take an immunosuppressant called Tacrolimus (Adoport®, Advagraf®, and Prograf®) every day for as long as you have the transplant. You must never stop taking this medication. 11 You must make sure that you never run out of your immunosuppressant medication. Check that the brand of tablets remain the same as you should not change brand unless the transplant clinic team tell you to. If you have any concerns regarding the immunosuppressant medication, please contact the transplant clinic team immediately. Some people also have to take Mycophenolate Mofetil (Myfenax, CellCept®) and Prednisolone in combination with the Tacrolimus. Please do not take your immunosuppressant medication on the morning of your clinic appointment as blood tests will be taken to measure how much of the drug is present in your blood to make sure that you are receiving a safe and effective dose. What are the side effects of the medication? All immunosuppressants increase your risk of getting some cancers. We will monitor you carefully to minimise that risk. Report anything unusual that you notice to us. All immunosuppressant drugs make your skin more sensitive to UV light – you will have to avoid strong sunlight, use suitable protective clothing and sunscreen of at least SPF25. You will need to report any skin lesions to your doctor. All immunosuppressants increase your risk of developing an infection and you will be asked to report any signs of infection (for example, sore throat, fever or flu-like symptoms) to your doctor. Tacrolimus You may experience a slight tingling and numbness in the hands and feet or possibly a slight tremor – these side-effects should improve with time.Hair-thinning may occur. You will have to avoid perms or hair dyes for the first few months as your hair will be weaker. Other side-effects include nausea, headache and difficulty sleeping. Some people may develop high blood sugars leading to diabetes – we will monitor this and treat it if necessary. Mycophenolate mofetil The most common side effects are diarrhoea, vomiting and abdominal pain. You may get mouth ulcers, so use a soft-bristled toothbrush, keep your mouth clean and see your dentist every six months. This drug can reduce the number of blood cells you produce. Tell us if you have any signs of infection, such as a sore throat, fever or flu-like symptoms, unexplained bruising or bleeding. We will do tests to check your blood cells are not being harmed. Prednisolone Stomach irritation may occur, so it is best to take this with or after food. You might put on weight, especially around your face. You may experience mood changes too, which you should report to us. Some people develop acne – discuss this with us if it is problematic. Other risks are weakening of the bones and high blood sugars, leading to diabetes. We will monitor you for these and treat you as required. While you are taking Prednisolone you will have a steroid treatment card to carry with you at all times, containing useful information. Are the drugs safe to be taken with other medications? Immunosuppressants can interact with a number of other drugs. Always carry an up-to-date list of your medicines with you. Bring this with you to every transplant clinic appointment, but also 12 take it with you when you visit the GP, dentists or pharmacy. If any healthcare professional wants to start you on any new medicine, they must know what other medicines you are already taking first, so they can avoid anything that might cause an interaction or affect your transplant. If you are prescribed any new medicines and are not sure about taking them, always check with the transplant clinic to see if they are suitable before you start taking them. And always tell us about any new medicines you have been prescribed by anyone else. Are there any foods or drinks I will have to avoid? You will not be able to drink grapefruit juice or eat Seville oranges while you are on Tacrolimus. Can I buy medicines from the chemist? You can buy medicines from your local pharmacy but only if the pharmacist checks for you that they are safe for your kidney transplant and that they do not interact with your other medicines. If you want to buy any medicines over the counter you can always check with transplant clinic if they are suitable for you as well. It is essential to check with the transplant clinic if you intend to take any herbal or homeopathic medicines. You must always let transplant clinic know when you attend your next appointment if you do start taking any medicines that you have bought over the counter. Will my medication change over time? Your medicines can change quite frequently, especially in the first few months after the operation. Always carry with you an up-to-date list of your medicines and their doses. We will always tell you when we have to make any changes, so you can amend the list. Is there a pharmacist in the transplant clinic I can talk to about my medicines? We have a pharmacist in transplant clinic who can answer questions about your medicines. They will see you in the first couple of weeks after you are discharged from hospital to see how you are coping with your new medicines, to arrange your first home delivery and to answer any questions that you may have about your medicines. After this time you can see the pharmacist in clinic or call in and ask for advice from one of the other members of the renal pharmacy team. You do not need to make an appointment. What do I do with medicines I no longer use? Take any unwanted or out-of-date medicines to your local pharmacy or bring them to the hospital pharmacy where they will be destroyed safely. Please do not put them into your own waste bin at home. When should I see my GP? Make an appointment to see your GP after your transplant. He or she will give you the prescriptions for all your medication, except the immunosuppressant medication. The transplant team prescribes and monitors these medicines. 13 Continue to go to your GP for all your non-kidney related problems, just as you did before the transplant. How do I get more immunnosuppressants? A three month supply of immunosuppressant medication will be delivered to your home. You will be asked to sign a consent form so the hospital can arrange this with a delivery company. Each delivery requires a new prescription from your transplant doctor. Please give four weeks notice when asking for a new prescription as it takes time to notify the company and arrange a suitable delivery date. It is very important that you do not run out of your immunosuppressant medicines as this will seriously affect the function of your transplanted kidney. What other medicines will I have to take? Everyone is different and we will prescribe medicines specific to your needs. However, there are some other medicines everyone has to take after a transplant. Valganciclovir is given for three months to prevent viral infection Co-trimoxazole or Pentamidine is used for six months to prevent bacterial infection Nystatin mouthwash is given for six weeks to prevent fungal infection blood thinning injections are given for at least a month to prevent blood clots forming and then most patients are switched to a low dose aspirin tablet Omeprazole or Lansoprazole is given to protect your stomach most patients are prescribed a statin to maintain their lipid balance many patients are prescribed blood pressure lowering medicines Remember, you can buy over-the-counter medicines, but only if the chemist checks they are safe for you and they do not interact with your other medicines. You must always let the transplant clinic know if you intend on taking other medicines bought over the counter. Can I have hospital transport to my follow-up clinic appointments? We encourage you to make your own way to hospital if you can. If you feel you need transport, we will assess your medical need – please talk to the ward or clinic sister about this. What should I bring to the clinic? On your first visit to clinic, please bring with you: a copy of your discharge summary your medication list Please note – if you are reading this for someone whose first language is not English please ask them to bring an English speaking family member or friend with them to the clinic who will be able to help with the consultation. What will happen at my clinic appointment? Before your visits, please do not take your morning dose of immunosuppressant (anti-rejection) medication. Bring it with you, so you can take it after your blood tests. The transplant clinic is very busy and you may find yourself waiting for several hours. This is because we monitor all our kidney transplant patients very closely, especially in the first weeks 14 and months after the operation. Please bring something to read and some money for refreshments and parking. There is a tea bar close to the clinic. At every visit the following will happen: blood pressure, pulse and weight checked test your urine sample for analysis (please bring or be prepared to give a sample) test your blood to assess your kidney function and medication levels a consultation with a doctor you may see a clinic nurse to review and redress your wound (if necessary) you may want to talk to a pharmacist about your medication – at the first appointment he or she will register you for home delivery of your immunosuppressant medication Please bring your list of medications. In the evening, after your visit, we may telephone you to make changes to your medications or ask you to return for another appointment. Please make sure we know if you are going to be at a different telephone number from your usual one. How often will I need to come to the clinic? In the first few weeks after your transplant, you will need to come to the clinic at least twice a week and sometimes more frequently if we are concerned. As you recover and your transplant function stabilises you will only need to come once a week, or once a fortnight. By the time of the first anniversary of your transplant, your appointments are likely to be once a month. The longest gap between appointments is three months. General information post transplantation When should I be concerned and get in touch? Contact the renal team for advice if you are experiencing any of the following symptoms: you have a temperature higher than 37.5c or 98.4f you are not passing as much urine and you have swollen hands or feet your weight is up pain in the area over your new kidney a red or sore wound site sickness, vomiting or have diarrhoea difficulty breathing or coughing up green or yellow sputum What is rejection? This is when your immune system reacts to your new kidney as a foreign object and tries to attack it. If this is happening, your blood tests will show your kidney is not working as well as it should be, and you may have some of the symptoms listed above. Rejection is most common in the first three months after a transplant, although it can happen at any time. It is usually successfully treated with more anti-rejection medication. You will need to come into hospital for tests and a biopsy of the new kidney to make sure you are receiving the correct treatment. Although we manage rejection very carefully, it can lead to your kidney function gradually declining. 15 Are there any complications from a kidney transplant? We cannot guarantee there will not be complications, but we will keep you fully informed of any treatments you need and what outcome we expect. Here are some complications we look out for: there is a one to three per cent chance that we will need to remove your new kidney because you have bleeding or clotting (thrombosis) after the operation – this is known as graft nephrectomy if there is obstruction in your ureter after we take out the stent, we may have to remove your new kidney and put in a new stent your original kidney disease could come back, for example lupus nephritis, focal segmental glomerulosclerosis (FSGS) or diabetes – talk to us about this before the transplant if you think it might happen to you. What can I do about infection? wash your hands thoroughly and regularly avoid crowds, particularly in the first few months after your transplant when your immune system is at its lowest get advice from us if you come into contact with anyone who has an infection, such as chicken pox or shingles get advice from the renal clinic if you feel unwell have flu vaccinations to prevent yourself getting flu When can I drive? Unfortunately, you cannot drive for six weeks after your transplant operation. This allows your internal muscles to heal and prevents pain or damage to your wound. Inform the DVLA (Driver and Vehicle Licensing Agency) that you have had a transplant. When can I go back to work? You could be off work for up to three months, depending on the type of work you do. You may well be well enough to go back sooner, especially if you can negotiate a phased return or lighter duties. Ask our advice if you want to go back to work early. You will need to tell your employer that it is essential that you can be released to come into hospital for your frequent clinic appointments and other tests. We will give you medical certificates as necessary. Will the transplant affect my diabetes? At first, you should expect your anti-rejection medication to affect the control of your blood sugars. You will need to monitor your blood sugar more closely and alter your medication to keep them steady. We have a diabetes specialist nurse who can talk to you if you have any concerns. Will the transplant affect my blood pressure? You must have well-controlled blood pressure after your transplant, otherwise the life expectancy of your new kidney could be affected. We will treat any high blood pressure, so you will probably still need some medication after your transplant – however it may be reduced. 16 What can I eat? One of the benefits of a successful transplant is that you may not need to keep up all your previous dietary restrictions and can enjoy a more varied diet. Avoid putting on weight by following these guidelines: eat at least five portions of fruit and vegetables a day – but avoid grapefruit and Seville oranges and/or juice, as these react with your immunosuppressant medicines include fibre-rich foods in your diet drink plenty of fluid eat an appropriate amount of salt, as advised drink a moderate amount of alcohol (see below) limit fatty and sugary foods. Our dietician will give you some food safety tips to minimise the risk of infection. Can I drink alcohol? You can drink some alcohol in moderation. It can dehydrate you, which will affect your kidney function. Make sure you drink water and soft drinks at the same time to prevent this. What about smoking? Smoking causes severe health problems. After a transplant it’s important to stop smoking, to prevent damage to your new kidney. We understand that it is not easy to stop, so ask us for advice on this. When and how can I exercise? Keeping active is good for you. Before you go home after the operation we expect you to be able to climb a flight of stairs without any discomfort. Start by doing some gentle walking. Once your wound has healed, try something more vigorous, such as swimming. When you are fully recovered and feeling well you can take part in all sports apart from contact sports such as rugby or martial arts. Avoid these in case you damage your kidney transplant. If you are planning any new activities or sports, talk to us about them first. How often should I go to the dentist? Have a check-up every six months. Make sure your dentist knows you have had a kidney transplant and what medication you are on. If you are having any invasive dental work you will need antibiotics before your treatment. Talk to us for advice about this. When can I have sex again? You can have sex as soon as you feel ready. Ensure you practise safe sex – your immunosuppression medication puts you at greater risk of sexually transmitted infections. Should I use contraception? It is important to use contraception to prevent you getting pregnant for the first year after your transplant. When can I get pregnant? If you want to plan for a family after your transplant, please ask us for advice. You may need 17 pre-conception counselling and a change in your medication, as it may affect your baby’s health. What health checks do I need? Immunosuppression medication can make you more susceptible to cancer, so you should be regularly screened. women: you should have regular cervical smears at your GP practice men: you should regularly examine your testicles women and men: you should examine your breasts for lumps and have mammograms report any lumps or changes to your doctor immediately Travel advice after transplantation Where can I go on holiday? Talk to us about any holiday plans before you make any arrangements. We need to check your kidney function is stable and that you are well before you travel. We will take into consideration how far you want to travel and how quickly you could get back to the UK if you became ill. We might agree to you going to Europe sooner after your operation than we would if you were planning to go to Australia or Asia, for example. Normally you will be able to travel in the UK from 12 weeks after the operation, and you can go abroad after one year. Do I need a “holiday letter”? Ask your clinic nurse for a holiday letter, giving plenty of notice. This provides details of your condition and your medication, which you may need when going through customs. It will also give you advice on looking after yourself and what to do in an emergency. Where can I get holiday insurance? You must have holiday insurance before you travel abroad with a transplant. You can get advice from the National Kidney Foundation: telephone 084 5601 0209, www.kidney.org.uk What other precautions should I take when I travel abroad? In some parts of the world, tap water is not available or is unsafe to drink. Do not add ice to your drinks or brush your teeth with tap water in these countries. Instead use boiled or bottled water from a safe source, or chemically purified/filtered water. Some foods will not be safe for you to eat abroad. These include salads, raw fruit and vegetables, unless you have washed them in bottled or boiled water and peeled them yourself. You must avoid: any food that has been left exposed to flies food shared with lots of people, such as buffets 18 unpasteurised products, including dairy products and fruit juices undercooked or raw fish, meat or shellfish reheated food, especially fish, meat or rice takeaways and street food (unless thoroughly cooked in front of you) fresh or cooked food that has been allowed to stand at room temperature in warm environments Mosquitos carry diseases such as malaria, yellow fever, dengue fever and Japanese encephalitis. Ticks and other insects also carry infections. You must take malaria phrophylaxis medication if you travel to a malarious area, but try to avoid getting bitten by any type of insect in the first place. If you can, you should: stay in air-conditioned buildings wear loose-fitting clothes that cover all of your skin (long trousers and long sleeves) use an insect repellent sleep under a mosquito net keep your windows closed at night avoid going out at night when mosquitos are most active It is very important to protect your skin in the sun. Cover up, wear a hat and use a sunscreen of at least factor 25. Apply it regularly, paying particular attention to your forehead, ears, nose and hands. Do you have a travel clinic at the hospital? The renal centre does not run a travel clinic. Your GP surgery will have one, or you can visit an independent one. You will need to give them your medical and transplant details and a very clear itinerary of your intended trip. They will give you general travel advice and also tell you if you need any vaccinations or whether you need to take malaria prophylaxis tablets. What vaccinations can I have? Always check with us about any vaccinations you may need to go abroad. Can I take anti-malarial medication? You must get agreement from us about any anti-malarial medication you take – some antimalarial drugs can affect the levels of immunosuppressant drugs in your blood. Once we have agreed the treatment, your GP will prescribe it. If you are taking anti-rejection medication, you should not have live vaccines such as: After medical advice you can have vaccinations for: polio BCG yellow fever vaccine typhoid (TAB) oral vaccine MMR rubella 19 cholera diphtheria hepatitis A and B meningococcus tetanus Useful contacts Imperial College hospitals: 020 3313 1000 De Wardener Ward: 020 3313 6690 Peters Ward: 020 3313 6661 Handfield Jones Ward: 020 3313 6676 Kerr Ward: 020 3313 6705 Planned Investigation Unit (PIU): 020 3313 6682 Renal Assessment Unit (9am to 5.30pm Monday to Friday, 10am to 2pm Saturday, closed Sunday): 020 3313 6603/6604 Renal outpatients Hammersmith Hospital: 020 3313 8333 Renal outpatients St Mary’s Hospital: 020 3312 1267 Renal counsellors: 020 3313 6658/020 3313 6620 Social support worker (Monday, Tuesday, Wednesday): 020 3313 6619 Pharmacy/medicines helpline (9.15am to 5pm Monday to Friday): 020 3313 2627 Living donor transplant coordinators: 020 3313 5322/020 3313 8145/020 3313 1926 Renal dieticians: 020 3313 3048 Patient transport: 020 3312 1919 Websites www.imperial.nhs.uk/services/kidneyandtransplantservices www.imperial.nhs.uk/renal www.westlondonkpa.co.uk www.transplantsport.org.uk www.organdonation.nhs.uk www.nhsbt.nhs.uk 20 How do I make a comment about my visit? We aim to provide the best possible service and staff will be happy to answer any of the questions you may have. If you have any suggestions or comments about your visit, please either speak to a member of staff or contact the patient advice and liaison service (PALS) on 020 3313 0088 (Charing Cross, Hammersmith and Queen Charlotte’s & Chelsea hospitals), or 020 3312 7777 (St Mary’s and Western Eye hospitals). You can also email PALS at [email protected]. The PALS team will listen to your concerns, suggestions or queries and is often able to help solve problems on your behalf. Alternatively, you may wish to express your concerns in writing to: Complaints department Fourth floor Salton House St Mary’s Hospital Praed Street London W2 1NY Alternative formats This leaflet can be provided on request in large print, as a sound recording, in Braille, or in alternative languages. Please contact the communications team on 020 3312 5592. Wi-fi We have a free and premium wi-fi service at each of our five hospitals. Look for WiFiSPARK_FREE or WiFiSPARK_PREMIUM Renal and transplant service Published: Nov 2016 Review date: Nov 2019 Reference no: 2384T (refreshed) © Imperial College Healthcare NHS Trust 21
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