The Keys To Kidney Health

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2 The Keys To Kidney Health Have your kidney function checked regularly by your GP if you are diabetic. Keep your weight in check to prevent diabetes, heart disease and other conditions linked to kidney disease. Know your blood pressure. High blood pressure speeds up kidney damage. To protect yourself you should: check your blood pressure regularly; take your blood pressure medicine; and keep to a diet low in salt and fats. Keep fit and active - this helps to reduce your blood pressure. Don t smoke - cigarette smoking slows blood flow to the kidneys, so they are not able to work well. Quit smoking. Know your kidney function - if anyone in your family has had kidney disease, or if you are Asian or African, get your kidney function checked by your GP.

3 Keeping Your Kidneys Healthy A guide to help you understand and manage the early stages of kidney problems Text: Anne Kennedy, Senior Research Fellow, Primary Care Research Group, The University of Manchester With help and advice from the People with Long-term Conditions Manchester CLAHRC team: Tom Blakeman, Christian Blickem, Carolyn Chew-Graham and Jo Protheroe. Cartoons: Fran Orford Photography and Design: Nathan McDowell Second edition: January 2012 Acknowledgements: With thanks to patients at GP practices in Greater Manchester who told us about their experiences and commented on the guidebook. Funding: Collaboration for Leadership in Applied Health Research and Care (CLAHRC) Manchester. NIHR CLAHRC for Greater Manchester is a collaboration of Greater Manchester NHS Trusts and the University of Manchester, and is part of the National Institute for Health Research.

4 Keeping Your Kidneys Healthy Contents 5 Introduction 7 Basic information about the kidneys 11 Experiences of people with early stage kidney problems 17 How the NHS aims to take care of people with early stage kidney problems 23 What you can do to keep your kidneys healthy 32 Websites

5 Introduction This booklet is for people who have early signs of kidney problems. There are things you can do to keep your kidneys healthy and reduce the risk of future problems. You may not be aware that you have the early signs of kidney problems because: Early kidney problems don t give you symptoms; and They are likely to be discovered through routine tests. You now need to be more aware because: You have a risk of future kidney damage and other serious health problems. Most people do not go on to develop kidney disease. If you do things now to keep your kidneys healthy, this can prevent or delay future health problems. What are the issues? As we get older, our kidneys start to work less well, but some people have a greater risk of their kidneys becoming slowly more damaged over time. Doctors and nurses may say you have early signs of kidney problems or that you have slightly low kidney kidney function. This does not mean that you have kidney disease. You may need repeated tests to make a diagnosis. Being aware of your kidney tests, can help you and your health professionals do things to keep your kidneys healthy. Keeping your kidneys healthy can help prevent you developing more serious kidney damage or reduce your chances of problems such as having a stroke or a heart attack. Page 5

6 Keeping Your Kidneys Healthy There are two types of research evidence that you can use to help you manage your kidney problems: 1. Medical evidence about treatment. 2. People s own knowledge and experience about how to live with kidney problems. This guidebook will tell you about how people find out about and live with kidney problems. This sort of evidence comes from interviews with people and research about self-management. Many people with kidney problems are also interested in medical evidence about treatment and use this knowledge to help them manage their day-to-day lives. We know that this sort of information does help people feel better and more able to manage their health problems. You may find it helpful to read about how other people deal with the day-to-day struggles of living with kidney problems. You may find support from finding out that other people have the same thoughts, experiences and feelings as you. We hope you will use this guidebook to: Think about how you are managing your kidney problems now. Think about whether you want to change anything. Plan ways to make changes by: -> Doing things for yourself; -> Using the support of friends, family and community groups; or -> Working with your doctor or nurse.

7 Basic Information About The Kidneys What are they? Bean Shaped Size of your fist Located in the middle of your back What do they do? Filter the blood and get rid of waste Maintain fluid and water balance in the body Release important hormones What can damage kidneys? Diabetes High Blood Pressure High Cholesterol Other Risks: > Smoking > Genetics > Some medications: NSAIDS (Non Steroidal Anti-inflammatory Drugs such as Aspirin, or Ibuprofen) > Trauma > Infection > Some medical conditions such as an autoimmune disease: lupus Page 7

8 Keeping Your Kidneys Healthy How will you know your kidneys are at risk? Most likely by a blood sample testing your kidney function and a urine sample to check for protein In the early stages you won t feel any different as there are no symptoms for early kidney problems difference Early stage kidney problems are common. Around 5% of the population have the early stages of kidney problems Four things your doctor or nurse will do to monitor your kidney health 1. A urine dipstick to check for blood. 2. A urine sample sent to the lab to check for protein. 3. A blood test to check your kidney function. 4. Your blood pressure (aim for less than 130/80). Your doctor and nurse will use these results to work out how well your kidneys are working.

9 You may hear your doctor or nurse talk about early stage kidney problems or early stage kidney disease. This does not mean that you have a diagnosis of kidney failure, which is also known as established renal failure. It does mean that you and your doctor or nurse may need to discuss changes to your medication and to your lifestyle. This is important in order to help reduce your chances of going on to develop kidney failure and to reduce your chances of getting further heart or stroke problems. You are more likely to have problems with your heart or to have a stroke than you are to develop kidney failure. Page 9

10 Keeping Your Kidneys Healthy Other tests and referrals Your doctor may want to organise an ultrasound scan to see if there are any other problems with your kidneys or bladder. You may be offered a scan if: Your kidney function is getting a lot worse; A dip stick test shows there is blood in your urine; You have symptoms of a blockage in the normal flow of urine in your urinary tract due to a kidney stone or enlarged prostate for example; or You have a family history of polycystic kidney disease. Most people with early stage kidney problems can be treated by their GP and nurse and do not need to be seen by a specialist. However, your doctor may want to discuss your case with a specialist (by phone, letter, or ) or arrange a referral if: Problems are found on the ultrasound scan; You have very large amounts of protein in your urine; Your kidney function is getting worse quickly; or Your blood pressure is difficult to keep under control.

11 Experiences of people with early stage kidney problems Getting a diagnosis The whole experience of finding out you have kidneys which are not healthy can be full of uncertainty. First of all, you won t be aware of having problems because you won t have any symptoms. Then, if your doctor decides you are at risk, it can take some time to get a diagnosis because this requires at least 3 blood tests taken over 3 months. Finally, you may be feeling very unsure about what actions you should take to make sure your kidneys are healthy or to stop them getting worse. I didn t know I had a problem because I was having blood tests last year for various things and I had my kidney blood test done about three times I just got a letter telling me about my kidneys weren t right and it s still on my notice board and I said, No you ve got me mixed up with somebody else. He said, No you ve got kidney disease. So I said, Well where can I go, what can I do, what can I buy, you know? Page 11

12 Keeping Your Kidneys Healthy In most cases, your GP will do blood tests to check your kidney function if he or she thinks you are at risk of developing problems because of other health conditions. Risk factors for kidney problems Diabetes Raised blood pressure Kidney stones Enlarged prostate Multisystem diseases with potential kidney involvement Family history of kidney disease Finding blood or protein in your urine I found out because they told me I had diabetes and through the checks that they do here, they re very good, that s how I found out. Understanding the problem The early stages of kidney problems will not give you any symptoms and people say that this makes it hard to understand what is going on. So that s what I can t come to terms with because I don t feel ill, I ve got aches and pains, I ve got arthritis yeah I m nearly 70 so you re expected to have things like that. I still didn t understand what was really happening here. I think too the medical terminology of all of this, was very hard to understand. What we need is someone to break it down in plain English, what s going on I spent a good; I d say at least 6 months, dancing around with my treatment, just not taking it serious. I wouldn t say really serious, just it seemed a bit excessive the amount of medication There s no way it could be that bad, you feel good, that s the worst thing about it in the beginning you don t realise it s a filter and if it s not working efficiently then you get a problem.

13 The kidney is a complicated organ and it can be difficult to understand what is going on, but people do find helpful ways to describe what the kidney does and what is happening when it starts not to work so well. I can only describe it I ve got the beginning of kidney problems, I don t know the technical terms but apparently my net in the kidney is a little bit wider than it should be and lets protein through that it shouldn t do and they give me medication for that and, as far as we know, it works each time I come. Doctors and nurses call early stage kidney problems: Chronic Kidney Disease or CKD for short. Medical people mean long-term when they use the word chronic and if this is not explained, it can cause people to worry. What do you think about the words chronic kidney disease, what do they make you feel? Person 1: Frightening. Person 2: Well it is frightening because at our age we know chronic as being Person 3: Hard, bad. Person 4:The end of the road really don t we. Person 5: Chronic is, you know, you re critical, sort of, really, you re at a stage where, you know, things can go vastly wrong Page 13

14 Keeping Your Kidneys Healthy Feeling you are not being told the facts Doctors and nurses often don t tell people they have early signs of kidney damage because they don t want to cause unnecessary worry. People say they want to know the truth about anything that is wrong with their health, but we are all generally bad at assessing risk and when there are no symptoms, it is even harder to know what to do or how seriously to take it. Some doctors feel that it might cause a few people to become very anxious if they are told they being tested for kidney problems when they are really only at risk of getting kidney problems. Why some GP s don t tell patients with early kidney problems is that they feel that there may be lots of other things going on but they have other conditions that they need to prioritise and think more about and they don t want to give them another disease, as it were, to think about and worry about but also, it s because maybe they wouldn t do anything any differently anyway, you know, actually, if you don t tell people, it s probably best not to scare them No I don t want too much knowledge, you know, really, so the GP has to judge it if he knows his patient then he has to judge whether to tell them or not.

15 Blood tests may be needed for several months before it is known that your kidneys are not working as well as they should, so you may feel that your doctor is not telling you things or it may not be clear to you why you are having so many blood tests. People can feel confused and upset that their doctor is not telling them things. I think if you re taking a lot of medication which I do myself and I ve had quite a lot of tests I think when you do come in you should be actually told what, you know, your cholesterol and your kidneys and your liver and how everything s functioning. I want people to be upfront with me, you know? I m the age you don t have to sugar coat nothing. I m a big boy. Tell me exactly what is going on. Let me know and I ll deal with it. Sometimes, when doctors and nurses are still uncertain about what to tell you about your kidney health they can say things which may make you feel you have not got a long-term condition that needs attention. They said I had a slight problem with the kidneys but it should clear up, I m not on any medication for it at all. They keep saying you re border line but you ve got a broken leg or you haven t got a broken leg Once you reach an understanding with your doctor or nurse, then it is easier to carry on with your treatment without getting anxious. We talk about it each time I come and it doesn t seem to be something that they think I should be worrying about at the moment and I think they will tell me when there s something to worry about! Page 15

16 Keeping Your Kidneys Healthy Well, they say, your blood tests have come back, your kidneys are now working okay because I m not sure which is the medication that does it, and that s fine, the readings are good I m quite confident in what s going on. Setting priorities For most people, kidney problems are linked to other health conditions such as diabetes or high blood pressure. It may be that you are already taking a lot of medicines and it can be hard to decide how seriously you should take the risk of developing kidney disease. But when you have kidney disease like I have I don t feel anything, the only thing that bothers me is the diabetes I think one of the problems is when you ve got diabetes, you are dealing with it every day, you are the manager and with kidneys, you see your doctor every six months and that means nothing because you re not dealing with that, it s hidden Well in my case it s, it s awkward because I have had that many things and I feel embarrassed sometimes going because I am going with something else you know, there s something else gone wrong and then I get that sorted out and then...for different ailments and that like and now I ve got that many tablet s and I don t know you know, swapping and changing tablet s, getting tablet s from the hospital and I don t know where I m up to with them. This woman with diabetes and kidney problems regrets that she did not think it important to take blood pressure medication when she was younger. When I was first put on to blood pressure medicine I thought it was just something the doctors gave me, just another medicine I had to take.in hindsight, I was a fool. Because I don t know if it was ever explained to me that, it may have been, but I don t think it ever registered, how important those medications were to the ongoing and long-term treatment of the diabetes.

17 How the NHS aims to take care of people with early stage kidney problems There are national guidelines about kidney care and treatment that your GP practice will follow. It is important to identify and treat the early signs of kidney problems as soon as possible as this can prevent or slow down serious damage to your kidneys. Your practice will: 1. Check your kidney function if you have a health condition that puts you at risk of kidney problems. 2. Check your blood pressure every six months. 3. Add you to a register of all patients who are being monitored for kidney disease. 4. Do blood tests at least once a year to monitor your kidneys. 5. Test your urine for protein. 6. Give you medicine to lower your blood pressure if it is too high. 7. Offer you advice on a healthy diet and lifestyle. Your GP practice may need to repeat tests several times to make a diagnosis as the tests can be easily affected by simple things such as eating meat before a blood test. Page 17

18 Keeping Your Kidneys Healthy Let health professionals know you have kidney problems You can help protect your kidneys if you remind your doctor that you have the early stages of kidney problems. This information might be important if you are admitted to hospital in any sort of emergency or if you see any doctor about a problem that is not related to your kidneys such as flu. Working with your healthcare team Asking questions Be prepared and think about what you want to ask during your appointment with your doctor or nurse.

19 Questions you might like to ask about your kidneys Can you give me more details about the tests I should have? How will I know if my kidneys are getting worse? Will my kidney problems affect treatments for other conditions I have? What are the pros and cons of having this treatment? Are there any support organisations in my local area? You can get more details about how kidney care is managed by the health service by looking at the guidelines produced by NICE (National Institute for Clinical Excellence, see the information on web sites at the end of this book). Page 19

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22 Keeping Your Kidneys Healthy Understanding your medicines Your doctor may offer you medication to help keep your blood pressure under control (the aim is to keep it less than 130/80). Your doctor will check the levels of protein in your urine. If you have protein in your urine, your doctor may want to offer you medication even if you don t have high blood pressure. There are several medicines that can be used to control blood pressure. If you have protein in your urine, you are likely to be offered ACE inhibitors (this stands for Angiotensin-Converting Enzyme inhibitors) or angiotensin-ii receptor blockers. You may need to try different doses of these medicines to find the right dose for you. To make sure this is done safely you will have your kidney function and blood potassium levels monitored (this is done by blood tests). This should happen before you start taking the medicines, 1 or 2 weeks after you start, and each time the dose is increased.

23 What you can do to keep your kidneys healthy There is no special advice for ways to keep your kidneys healthy other than to try to keep to a healthy lifestyle which means: Eat healthy food; Drink enough fluid; Do not add salt to your food, read food labels for salt content; Keep to a healthy weight; Stop smoking; Exercise regularly; and Do not drink much alcohol. In addition If you have diabetes, monitor and maintain good blood sugar control. Take your medications regularly especially blood pressure medicines. Good blood pressure control is the most important way to protect your kidneys. Avoid regular use of non-prescription NSAIDs (Non Steroidal Anti-inflammatory Drugs such as Aspirin, or Ibuprofen) unless they are prescribed by your doctor. Check with your doctor or pharmacist before using herbal and other alternative therapies. Page 23

24 Keeping Your Kidneys Healthy Monitor your health Some people find it helpful to monitor their health by taking routine measurements or by keeping a record of their blood tests. In my case it s very important to keep my blood pressure within reasonable limits and both the GP and the consultant at the hospital are all very insistent about this, you know, they take the blood pressure every month and this sort of thing, so I check my own every week, so I think well, if I keep that down I feel I ll be okay, you know. Many people buy a blood pressure monitor to keep a personal record of their blood pressure. There is evidence that doing this may help you feel more of a sense of control.

25 Here are some questions people have about what they should do. Symptoms Are there any symptoms that you would be looking for to say that your kidneys are working less efficiently? Advice: There are no symptoms in the early stage you may feel tired and have less appetite; occasionally some people have noticed slight itching, which may be due to the kidneys not being as good at filtering the blood. Fluid Well I would want to know if there was anything that I could do to help the situation like drink more water - which I was told when I came for one blood test, you need to drink more water. The next blood test, I was told I ve drunk too much water. Advice: Fluid intake can affect the blood tests but there is no specific advice for early kidney problems simply a well-balanced diet with a good fluid intake will help keep your kidneys healthy. Diet I think we really need a diet sheet... don t do that or cut right down on them, you know. That would be very helpful if they have a list of things; do and don ts Page 25

26 Keeping Your Kidneys Healthy Advice: There are no standard diets for people with early stage kidney problems. A well-balanced diet is appropriate with regular physical activity and limiting alcohol intake to 2 drinks or less per day. Your practice nurse can provide you with a diet sheet. Medication Are there certain tablets that you re on that can affect your kidneys? Advice: Yes some painkillers such as ibuprofen or aspirin can affect your kidneys discuss any over the counter medications with your GP if you are unsure. Future When they say they re controlling it, does that mean they re controlling it or will it gradually go worse Advice: Only a small number of people with early stage kidney problems will progress to worse problems. If you maintain a healthy approach to life and keep taking the medicine your doctor prescribes this should prevent or slow down kidney disease.

27 How to stay motivated Making changes to develop a healthy lifestyle can be very difficult and so it is important to have the support and understanding of family, friends and colleagues. You may find it useful to talk to those around you about some of the things you need to do to look after your health so that they are in a position to help and support you. Eating healthily It can be hard to change patterns of eating and if you want to start a healthy diet, you will need the support of your family or people you live with. Page 27

28 Keeping Your Kidneys Healthy Some people it would really be a problem for them to not have biscuits but it doesn t bother me and we ve always eaten fresh food so, you know, just a healthy diet really and that s what we do. Changes to your diet can be made easier by talking to people you live with about food you should be eating or avoiding and this may help you to make decisions together about family meals and grocery shopping. You might consider joining a local group or go to local meetings of a national organisation such as slimming world or weight watchers for tips on how other people manage their diet. (See the weblinks at the end of the book)

29 Find ways to build exercise into your daily life Doing exercise can be more enjoyable if you do it with other people so think about joining something like a walking club or find someone you know who feels they would benefit from more exercise and talk about activities you could do together. It can be helpful to plan to exercise so that it is built into other daily routines you have to do, such as walking your dog or getting to work. Exercise can be a way to get to know other people which can help improve your sense of well-being. Now, I do a lot of exercise, unfortunately, I m on my own, single, I ve a dog, so we walk about four hours a day. You meet lots of people that way as well, who have diabetes and other illnesses and get to know things, what s happening And this is how people how did you deal with this situation, well, I did this and this, so it helps you along the way. Page 29

30 Keeping Your Kidneys Healthy Exercise routines can be easily upset if other things change in your life. So it is a good idea to have a range of other ideas for activities you like doing. There are a range of activities you can do to stay physically active that are enjoyable and rewarding. For example, some people keep an allotment, play bowls or are members of the ramblers association. You could talk to your GP or practice nurse about where to access information about local groups that might provide opportunities to take part in physical activity. We used to go swimming and sauna, the sauna closed and then the baths closed for a while. So from that, certain friends who I used there was a nice group of us went to the gym that you pay an annual membership whatever. I didn t want to do that, I didn t want to be tied to be going two or three times a week to get your money s worth out of it. When it s decent weather I d sooner go for a walk then go to a gym...

31 Other things to consider Travel insurance People who have long-term conditions need to be aware of the small print in insurance policies. Many companies have a clause which says that they will not cover pre-existing medical conditions and if you make a claim for anything which could be related to kidney problems (such as a heart attack or a stroke) they will not pay out. This means you need to find a company which will accept medical conditions you already have. The National Kidney Foundation website has a list of helpful insurance companies. Page 31

32 Keeping Your Kidneys Healthy Websites There are a lot of websites with information about kidney disease. Most of these have information about more serious kidney disease rather than how to deal with the early stages of kidney problems. Some websites are better than others and you need to be careful about trusting websites which try to sell you cures or treatments. Here are some examples of websites with information about the early stages of kidney problems The NICE (National Institute for Clinical Excellence) website gives technical details for how CKD should be managed in the NHS. There is a NICE guidance document for patients and carers. You can look online for details of national weight loss programmes run as businesses which you have to pay to join. These are the websites of the most well-known: These are some national websites you could look at if you are interested in joining a walking group for exercise.

33 References used in preparing this book (1) Costantini L, Beanlands H, McCay E, Cattran D, Hladunewich M, Francis D. The self-management experience of people with mild to moderate chronic kidney disease. Nephrology Nursing Journal 2008;35(2). (2) Williams AF, Manias E, Walker R. The role of irrational thought in medicine adherence: people with diabetic kidney disease. Journal of Advanced Nursing 2009;65(10): (3) Sakraida TJ, Robinson MV. Health Literacy Self-Management by Patients With Type 2 Diabetes and Stage 3 Chronic Kidney Disease. Western Journal of Nursing Research 2009;31(5): (4) National Institute for Health and Clinical Excellence (2008) Chronic Kidney Disease CG73. London. Page 33

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