Treatments for kidney disease Information for patients, relatives and carers Introduction Everyone with kidney disease is different and has different needs. Your physical and emotional health, as well as the amount of time and support that you have available, will help determine which treatment options are most suitable for you. This booklet aims to help you understand your kidney condition and the treatment options available to you. It has been provided to help answer some of the questions you or those who care for you may have. Please rest assured that you will be guided through all of the medical decisions you need to make by knowledgeable and supportive staff. How should my kidneys normally work? Your kidneys perform a number of functions to keep you healthy and well. Every day, almost 200 litres of blood pass through tubes and tiny filters that make up the kidneys. Your kidneys: act as filters to remove the toxins and chemicals that accumulate in your blood, mainly from eating and drinking, to keep the right balance of electrolytes in your body including sodium, potassium, creatinine, urea and phosphate they make urine which regulates the body s fluid balance. This ensures your body has the right amount of water in it. They filter the liquid you drink and pass what you do not need as urine, along with the toxins help control your blood pressure produce a hormone called erythropoietin which triggers your bone marrow to make red blood cells (haemoglobin). Red blood cells carry oxygen to all parts of your body keep your bones strong and healthy by regulating calcium
What happens when my kidneys are diseased or damaged? The ability to filter the blood will be reduced so all of the kidney s functions (listed on page 1) can be affected. You could experience: a number of symptoms caused by the chemicals that build up in the blood. High levels of urea, for instance, can cause an unpleasant taste in the mouth, nausea and sometimes vomiting. swollen ankles or shortness of breath because there is too much fluid in your body. You may need to reduce how much you drink and take medication (diuretics) to increase the urine production high blood pressure, also known as hypertension. You may need antihypertensive medication feeling tired and lethargic because you develop anaemia. You may need iron medication and a hormone (known as Epo ) treatment itchy skin because you have too much phosphate in your body so you may require tablets and dietary restrictions These symptoms and the treatments for them will be discussed in more detail during your clinic appointments. What are the treatment options? During your time at the renal clinic, we will encourage you to make lifestyle changes such as exercising, healthy eating and stopping smoking. You may start new medicines to help treat the symptoms of kidney disease and be asked to reduce your fluid intake and make some dietary restrictions. However, when your kidney function reaches less than 20 per cent, we will ask you to consider four treatment options, also known as renal replacement treatments. These are listed below. When your kidney function deteriorates to approximately 10 per cent, this is called end-stage kidney disease and a treatment to replace the work of your kidneys is usually required. We want you to be involved in making decisions, planning your treatment and, where possible, carrying out your own treatment. Many people gradually become experts in managing their treatment and learning about the options available will help you feel more in control. We will guide you in deciding which treatment is best for you we understand that it is a big decision. The following treatments are available: transplantation: it is possible to have a living donor or a deceased donor kidney transplant. We will explore transplantation fully with you, although it is not suitable for everyone peritoneal dialysis: this is a daily, home-based treatment where you learn to self-manage your treatment haemodialysis: you could have this as a home-based treatment and learn to do it yourself, or have it performed by nurses at a hospital near your home three times a week supportive care: for some people transplantation is not possible and dialysis may not bring sufficient benefit. In this case, we continue to provide full outpatient clinic care for your symptoms but without dialysis. This will be fully explained in your clinic consultation 2
What happens if I choose supportive care? Supportive care means providing care without dialysis or transplantation by concentrating on controlling your symptoms. If you decide not to have dialysis, we will still see you in clinic and help you stay as well as possible. End-stage kidney disease is a terminal condition. However, our experience and research shows many patients who choose not to have dialysis may still live for months or years afterwards. Sometimes saying no to dialysis gives a better quality of life, with less time spent in hospital. As your health deteriorates with the loss of your kidney function, we will involve others in your care, such as your GP and the community team. If you are thinking about choosing supportive care it is important to discuss your wishes with your family and friends as well as your renal team. We have experienced counsellors who are here to help you explore your decision in more depth, if you want to. Please remember you can reconsider your decision and change your mind at any time. Should I have a kidney transplant? A successful kidney transplant is the ideal treatment for kidney failure as it is the best at replacing/restoring normal kidney function. To be considered for a transplant you will need an in-depth assessment. If you are fit and well you will need to have a series of tests and investigations (known as a work up) to see if you are suitable for transplantation. There are two ways of receiving a donated kidney: a deceased donor kidney is donated by a person who has died. Once you are activated on the waiting list, you could be called to receive one of these at any time via the national kidney transplant waiting list a living donor is a family member or friend who is willing to donate one of their kidneys. Any donor will have to be assessed as fit and healthy and suitable to donate Please ask the renal team for more information on transplantation. We hold transplant seminars which you and family and friends can attend. Please see the Trusts renal web page for further information: www.imperial.nhs.uk/services/kidneyandtransplantservices Other information booklets are available: Having a kidney transplant (reference 2384) Waiting for a kidney (reference 2388) If you know someone who is interested in being a kidney donor for you, please contact the living donor transplant coordinators for more information on: 020 3313 5322 / 8145 / 1926. In some instances kidney transplants are not possible. If this is the case, your doctor will explain why. What if I have diabetes - can I still have a transplant? A simultaneous pancreas and kidney (SPK) transplant is suitable for some people with insulin deficiency. Talk to your doctor or nurse to see if this is possible for you. 3
4
Why choose peritoneal dialysis at home? The need for regular dialysis has an inevitable effect on lifestyle. Having to make frequent trips to hospital for dialysis can be demanding and affect your family and work life. Peritoneal dialysis (PD) at home may be a more flexible treatment option. With PD, the supplies you need to use are portable and you can treat yourself almost anywhere, whether you are at home, at work, out for the day or on holiday. You will need to be motivated to learn something new and committed to carrying it out yourself. You will also need the support of a family member or friend and enough space for the PD supplies and equipment. You will need to do it every day, but we will provide training and support and will always be a phone call away. You will still have regular clinic visits to see your consultant. If you are interested in PD, we will invite you to one of our home therapy clinics where we will demonstrate what is involved. Once you have made a firm decision, you will require a formal assessment to ensure the treatment is suitable, although PD is suitable for most people. Training takes approximately one week and will be arranged to suit your needs. Two weeks before you need to start your dialysis we will insert a PD catheter. For further information, please contact your clinic nurse or the peritoneal dialysis nursing team on 020 8383 6647. What is haemodialysis? Haemodialysis works by removing the waste products and excess water from your body by removing blood and circulating it through a filter on a dialysis machine (pictured right). The filtered blood is returned to your body as a continuous process for the period of dialysis treatment. Typically, dialysis treatment lasts for four to five hours, three times a week, although everyone will have an individual treatment prescription. If you choose haemodialysis, you can train to do it independently at home and vary the treatment times to fit with your lifestyle. Alternatively, you can have haemodialysis in a dialysis unit performed by nurses. We will still encourage you to train to be independent or partially independent in the unit if you are unable to dialyse at home. Dialysis in the unit is provided at set times three times a week. To perform haemodialysis we need to create a vascular access into your body so that we can take the blood out and return it after it has been filtered. There are two types of access for haemodialysis: Arterio-venous fistula: this is a large blood vessel created by joining a vein to an artery. It is performed as a small operation, usually under local anaesthetic, and needs to occur three to six months prior to you needing dialysis. If this is your access of choice you will be referred to the access team for assessment. 5
We will ask you to preserve the veins, usually in your non-dominant arm (the arm you do not write with), for future fistula formation. This means avoiding having blood tests or blood pressures taken on this arm. Dialysis catheter: this involves two plastic tubes being inserted into one of your major blood vessels near your collar bone, usually under local anaesthetic, immediately before you start your dialysis. The catheter shown in this picture is known as a Tesio catheter. For more information please see the Vascular Access for Haemodialysis booklet (reference 2441). Why choose home-based haemodialysis? Haemodialysis at home has similar advantages to peritoneal dialysis in that it saves travelling to hospital three times each week. Once people understand how haemodialysis works, many can train and carry out their treatment themselves safely at home. You can organise your dialysis sessions around your work, family and social life. You can also choose to dialyse for fewer hours more frequently which has advantages of improved wellbeing and often fewer dietary and fluid restrictions. You will also have greater independence and freedom, with support and information just a phone call away. What will I have to do? You will need enough space for a reclining chair, a machine, dialysis supplies and good access to water and electricity. You need to be motivated to learn and be responsible for carrying out the treatment yourself. You will also need the support of another person when you are dialysing. You will be invited to attend one of our home therapy clinics to explain what is involved with the training and equipment. It does take longer to learn and set up at home compared to peritoneal dialysis so people usually start off training in hospital until they are fully able to dialyse themselves. Once home, the specialist home haemodialysis nurse will monitor your progress and you will continue to be seen by a consultant in clinic. What is hospital-based haemodialysis? Hospital-based haemodialysis means you attend a dialysis unit three times a week for four or five hours each time. Your appointment could be in the morning, afternoon or evening on Mondays, Wednesdays and Fridays, or Tuesdays, Thursdays and Saturdays. When you first start your dialysis you may need to dialyse at Hammersmith Hospital Auchi unit (020 3313 6627) which is our main centre. As soon as a space becomes available, where possible, you will transfer to a centre nearest to your home. Initially this may not be the most convenient day or time for you but you can request your preferred time and days when a space does become available. 6
The haemodialysis units: Central Middlesex dialysis unit Charing Cross dialysis unit 020 8453 2017 Hayes dialysis unit 020 8383 9800 020 8846 1752 St Charles dialysis unit 020 8962 5190 Ealing dialysis unit 020 8967 5737 Watford dialysis unit 01923 217 243 Hammersmith Auchi dialysis unit 020 3313 6627 West Middlesex dialysis unit 020 8321 2543 Hammersmith dialysis unit (at St Charles Hospital) 020 8962 4810 For further information on treatment options contact your clinic nurse Chronic kidney disease nurses Charing Cross/Ashford hospitals: 020 3313 0984 Central Middlesex Hospital: 020 8453 2693 Ealing/Chelsea hospitals: 020 3313 5240 Hammersmith Hospital: 020 3313 5247 / 5249 Northwick Park Hospital: 020 8869 5027 St Mary s Hospital: 020 3312 1267 Watford General Hospital: 01923 217 850 West Middlesex Hospital: 020 3311 1972 Other useful contacts Who should I contact? Clinic nurse: Telephone day: Urgent out of hours: Other: Hammersmith Hospital switchboard: 020 3313 1000 Renal counsellors: 020 3313 6658 / 020 3313 6620 Social support worker (Monday, Tuesday, Wednesday): 020 3313 6619 Pharmacy/medicines helpline (09.15 to 17.00 Monday to Friday): 020 3313 2627 Renal outpatients Hammersmith Hospital: 020 3313 8333 West London Kidney Patients Association: 07988 081 295 Home haemodialysis sister: 07876 397 950 Living donor transplant coordinators: 020 3313 5322 / 020 3313 8145 / 020 3313 1926 7
Hammersmith Hospital renal wards 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 3383 6682 (Monday to Friday 07.30 to 19.30) Renal assessment unit: 020 3313 6603 / 6604 (Monday to Friday 10.00 to 19.00 Saturday 10.00 to 13.00. Sunday closed) The urgent care centre is located at the front of Hammersmith Hospital. Websites www.imperial.nhs.uk/services/kidneyandtransplantservices www.imperial.nhs.uk/renal www.westlondonkpa.co.uk www.sdm.rightcare.nhs.uk Patient decision aids www.nhs.uk/conditions/kidney-disease-chronic www.britishkidney-pa.co.uk www.kidneypatientguide.org.uk www.kidney.org.uk/help-and-information www.kidneyresearchuk.org/health-information/resources www.organdonation.nhs.uk www.nhsbt.nhs.uk How do I make a comment about my treatment? 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 pals@imperial.nhs.uk. 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: Chief executive complaints, Imperial College Healthcare NHS Trust, Trust Headquarters, The Bays, South Wharf Road 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. With thanks to Baxter for kind permission to use their image. Renal division Published: ly 2015 Review date: ly 2018 Reference no: 2389Tv5 Imperial College Healthcare NHS Trust 8