Treatment options for patients with advanced kidney disease

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1 Feedback We appreciate and encourage feedback. If you need advice or are concerned about any aspect of care or treatment please speak to a member of staff or contact the Patient Advice and Liaison Service (PALS): Freephone (City Hospital campus): Freephone (QMC campus): From a mobile or abroad: ext or pals@nuh.nhs.uk Letter: NUH NHS Trust, c/o PALS, Freepost NEA 14614, Nottingham NG7 1BR Treatment options for patients with advanced kidney disease Renal Department This document can be provided in different languages and formats. For more information please contact the Renal Department on Tel: ext Rebecca Sims, Renal Department August All rights reserved. Nottingham University Hospitals NHS Trust. Review August Ref: 0915/v3/0815/AS. Public information

2 Making a choice Renal Replacement Therapy (RRT) is the term used for the treatments that are started when your kidneys fail. If your kidneys stop working, you have the following options available: More information available from Contact details Have a kidney transplant. Have Peritoneal Dialysis. Have Haemodialysis. Have Conservative Care. Notes and questions This leaflet explains each different method in more detail. It is designed to give you an initial overview of the methods. Your doctor and the specialist nurses will discuss the different types of RRT available to you and help you to make a decision about which type would be best for you. Not all forms of RRT are suitable for all patients because of medical considerations. If this applies to you, the reasons will be explained to you by your medical team. Sometimes because of medical considerations and personal preference, you may decide that renal replacement therapy is not right for you. You will then be looked after by specialist doctors and nurses through the Conservative Care programme. You and your family will have the opportunity to talk through all aspects of this decision. You may wish to use the space at the back of this leaflet to note down any questions that you or your family/carers may have so that you can discuss these with your doctor or nurse. 2 15

3 Most of these can be treated very effectively and our experienced conservative care nurses and kidney doctors would regularly review this treatment. The patients care would be shared between their GP, community team and kidney team at the hospital. For patients choosing conservative care, the kidney team can support them and their family and ensure that, whenever possible, patients are able to be involved in choosing how and where they are cared for in the last days of life. Kidney transplant A kidney transplant is not a cure, but is a good form of treatment. If you are medically suitable, it is felt to be the best type of renal replacement therapy. This is because a well-functioning transplant means no dialysis and fewer lifestyle changes. A pre-emptive transplant, carried out before dialysis is required, is considered the best form of treatment. However, this timing is not always possible. Many patients will need a period of dialysis whilst waiting for a transplant organ to become available. Organs can be donated from a living or deceased donors. 1. Live related transplant This is when a member of the recipient s family donates a kidney. 2. Live non-related transplant The kidney is donated by an individual who is not blood related to the recipient, but who is likely to be a partner /spouse or a close friend. 3. Cadaveric transplant The kidney is donated by an anonymous individual who has recently died. This individual would have given permission for his or her organs to be donated to someone in need. The transplanted kidney takes its blood supply from the large pelvic blood vessels. The urine drains into the bladder. Usually the patient s own kidneys do not need to be removed. 14 3

4 Advantages of kidney transplant A new healthy kidney takes over the work of the failed kidneys. You will have very few, if any, diet and fluid restrictions. After frequent early check ups, there will usually be fewer hospital clinic visits. For Live Related, and Live-Non Related transplants, the surgery can be planned in advance. For Live Related, and Live-Non Related transplants, the transplanted kidney is less likely to be rejected by the recipient s body. Disadvantages of kidney transplant Time spent waiting for a kidney transplant can be long and stressful. The transplanted kidney may be rejected, and you then have to commence (or return to) dialysis treatment. You will have to take immunosuppressant medications every day to reduce the risk of your body rejecting the kidney. These can cause side effects such as increase in the risk of infections. Some of the side effects may be serious. For Live Related, and Live Non-Related transplants, a family member, spouse or friend will undergo a surgical procedure. For Cadaveric transplants, the surgery cannot be planned in advance. You could be called at any point when a kidney is available and will need to be contactable at all times. Although transplants have very many advantages, it is important to recognise that transplants may fail, even after many years, and you would then need to return to a dialysis treatment of your choice. For some individuals, it is possible to consider a further transplant in the future. Unfortunately, busy units often have limited flexibility on dialysis days, times and length of sessions. There are usually fairly strict dietary and fluid restrictions. Travelling is more difficult and holidays must be taken in places where dialysis facilities are available. Conservative Care choosing not to have dialysis Unfortunately, some patients with advanced kidney disease may also have other serious health problems, particularly in older age. For patients with problems such as severe heart disease, advanced dementia or advanced incurable cancers, it is possible that they are not strong enough to physically tolerate dialysis. Dialysis may not improve the quality of their life and dialysis complications may even shorten their life. In this situation, it may be a better option to choose not to have dialysis and to be looked after by the conservative care team. Some patients are certain that they do not wish to have dialysis. For others, choosing not to have dialysis is quite understandably a very difficult decision and they need time to think things through and talk with carers or their family. The choice would be discussed in detail with the doctors and nurses at the hospital. Our specialist conservative care team is trained to support patients and their carers or family at this time. Patients with advanced kidney disease who choose not to have dialysis will eventually die of kidney failure. As kidney disease progresses, there may be some symptoms such as increased tiredness, nausea, skin itching or swelling. 4 13

5 Main Hospital or Satellite Unit Haemodialysis Patients attending the main unit will usually be those who are starting dialysis for the first time, are waiting to start the home haemodialysis training programme or are waiting for a local satellite unit placement. Those attending the main unit regularly tend to be those who are more frail or dependant, unwell or unstable on dialysis, or who live close by. Patients attending satellite units for haemodialysis usually have no other major medical problems and are often able to travel independently to these more local facilities. Benefits of Hospital Haemodialysis You are encouraged to participate as far as possible in setting up your dialysis, but if needed nurses are available to dialyse you. It keeps the dialysis regimen separate from family life. There are no equipment or storage requirements at home. You will have access to doctors, nurses and multi-disciplinary team if required. Disadvantages of Hospital Haemodialysis Depending upon where you live, there may be lengthy journeys to and from a dialysis unit. As there are sometimes unforeseen events in hospital units, there may be delays in starting dialysis sessions. There may be a long wait at the unit for transport service to take you home. Hospital transport is often shared and is not always available immediately after you have finished your treatment. Peritoneal Dialysis (PD) Peritoneal Dialysis is a simple and straightforward method of dialysis that can be performed at home. This dialysis method makes use of the patient s own peritoneal membrane (the lining of the abdominal cavity) to gently remove waste products and excess fluid. A small operation is required to place a permanent catheter (soft tube) into the abdomen. A special dialysis fluid can then be drained into the abdominal cavity. The fluid is left in place for a set time. When it is drained out, the fluid will contain toxins and excess fluid that would normally be removed in the urine. Peritoneal dialysis is performed manually by the patient, usually four times a day. It takes approximately 20 minutes to do each bag exchange. Changing the fluid manually like this is called Continuous Ambulatory Peritoneal Dialysis (CAPD). There are other methods of performing peritoneal dialysis that can be used if medically indicated. Some patients require help from relatives or carers to do the fluid exchanges. Special equipment is available to help patients who have poor vision or stiff hands. Most people will be able to find a form of peritoneal dialysis to suit them, but it may not be suitable for all patients. It may not work for those who have had significant abdominal surgery and those who are extremely frail would find it difficult. Peritoneal dialysis is supported by a specialist community nursing team. They will meet you before you start your treatment and will visit you regularly to monitor your progress. You will also have access to support from the Renal Unit 24 hours a day, 7 days a week. 12 5

6 Peritoneal dialysis fluid is drained in and out of the peritoneal cavity. This is a painless and gentle method of removing waste products and excess fluid. There is greater flexibility to tailor your dialysis regimen to your lifestyle. This should make it easier to lead a more normal life and fit dialysis around your family and work. Less restrictive diet and fluid intake on short daily dialysis. No travelling to the hospital and waiting for transport to pick up and drop off. You can recover from dialysis in the comfort and privacy of your home. You will be supported by a specialist community team who will visit you regularly. Telephone advice is available at all times. Advantages of peritoneal dialysis A gentle and continuous method of dialysis, working more like your own kidneys. Peritoneal dialysis preserves any remaining kidney function better than haemodialysis. Peritoneal dialysis puts less strain on the heart and blood vessels than haemodialysis. It can therefore be helpful for some patients with heart problems. It is a good first choice of dialysis method as, unlike haemodialysis, there is no risk of blood vessel damage which could restrict future dialysis options. There are usually fewer dietary and fluid restrictions than with haemodialysis. Peritoneal dialysis is carried out in the comfort of your own home with privacy and flexibility. This is particularly important for patients who work or have family commitments. Disadvantages of doing haemodialysis at home A designated room is required for the machine. Storage facilities and minor plumbing alterations are required. The renal unit will plan and carry out these works, and will usually be able to cover all or much of the cost of the conversion. Patients need to undergo a training programme with initial sessions in the hospital unit training wing (this is usually for about three months, but this can be scheduled around home and work commitments). Ideally, a helper or carer should be present at home during sessions. It can impact on home and family life. Unlike treatment on CAPD and APD, equipment is not portable so other methods are needed to dialyse away from home for work or leisure travel. 6 11

7 Dialysis sessions are three times each week, but when travel and waiting times are included total time per week for haemodialysis may actually be more than for peritoneal dialysis. Although haemodialysis is usually well tolerated, some patients feel unwell during these sessions. Additionally many patients find that they feel less well as dialysis approaches. After a dialysis session, some patients can feel very tired. Whilst you are on haemodialysis, you can read, write, sleep, talk or watch TV. You are not able to disconnect in the middle of a session. Some patients maintain or improve their physical fitness by doing exercises while on dialysis. Home Haemodialysis Some people are medically suitable to have Home Haemodialysis. Other factors are important, such as having suitable accommodation and being able to use the equipment safely. Peritoneal dialysis can also be carried out in other locations for example at work, whilst staying with friends or family or whilst travelling. There are very few restrictions on holidays. If you plan ahead, the dialysis fluid can be sent to almost any destination in the UK or abroad. There is no travelling to hospital for dialysis. Disadvantages of peritoneal dialysis The soft plastic peritoneal dialysis tube needs to be surgically fitted into the abdomen in a small operation. It does require some space to store equipment at home. To ensure good technique, a short period of training is required. This is usually done over three to five full or half day visits to the Home Therapies Unit. There is a risk of peritonitis (infection inside the abdomen) if strict cleanliness is neglected during the dialysis fluid exchange. There is also a small risk of long term scarring to your peritoneum, particularly if peritonitis occurs. Usually patients having home haemodialysis are those who would otherwise have chosen peritoneal dialysis to fit in with employment and family life but are not able to do so because of medical reasons. For those that are able to do home haemodialysis, it offers similar flexibility in terms of the frequency and timing of treatment sessions. Benefits of doing haemodialysis at home Evidence has shown that medical outcomes for most patients receiving home haemodialysis are far better than the outcomes for patients undergoing haemodialysis treatment in a main centre or satellite unit. There may be reduced fatigue and fewer symptoms of kidney failure. It may also reduce the number of doses of some of your medications. 10 7

8 Haemodialysis (HD) Haemodialysis involves filtering your blood through a machine. The waste products and excess fluids are removed using an artificial kidney called a dialyser. Blood is taken from your body, usually through needles in an enlarged blood vessel in the arm. The blood is pumped around by the machine, through the dialyser and back into your body. At any one time, only a small proportion of your blood is going through the machine. There are three different settings where haemodialysis can take place: Some patients are able to have haemodialysis at home. At the main regional Renal Unit which is based at the Nottingham University Hospitals City campus. In any satellite unit, which are located at the Queen s Medical Centre in Nottingham, Ilkeston Community Hospital, and the Kingsmill Hospital in Mansfield. (Some are operated wholly by NHS staff and some in conjunction with a private healthcare company.) In all cases, the medical care is provided by doctors working within the Nottingham University Hospitals NHS Trust s Renal Unit. Haemodialysis is performed a minimum of three times each week for four to five hours per session. If needed, it can be performed more frequently and for longer periods. It is necessary to access the blood circulation to perform haemodialysis. This means a surgical procedure to create an access point called a fistula. During the operation an artery and vein are joined together, usually in the forearm. After a few weeks the vein becomes larger and carries more blood. At each dialysis session a needle is placed in the fistula which diverts the blood to the dialysis machine. The cleaned blood is returned to the patient through a second needle in the fistula. If a fistula cannot be created, a permacath (semi permanent plastic tube) is implanted into one of the blood vessels. This may restrict activities such as bathing and swimming and there is a higher risk of infection. There is a small risk of permanent damage to blood vessels which can make future dialysis more difficult. If you still pass urine, starting haemodialysis can mean that you lose your final small amount of kidney function which means a stricter fluid restriction compared to peritoneal dialysis. 8 9