Patient Information Booklet

An information booklet

to help you look after your kidneys

About this information booklet This information booklet is adapted from material which was used extensively during a project carried out in 26 GP surgeries in England and Wales during 2010-2012. This project was called ENABLE-CKD and was designed to improve the quality of care of people with the early stages of kidney disease. This project was funded by The Health Foundation and managed by Kidney Research UK. The information booklet was partly written by people with personal experience of kidney disease, referred to as CKD (chronic kidney disease) and forms part of an overall ‘Package of Innovation for Managing Kidney Disease in Primary Care’.

It is intended to give some useful prompts and information to be used in conjunction with the advice you receive from your doctor or nurse. We hope you will use it to learn about CKD and what you can do to help with your own care.

The booklet helps you to: n Think about the benefits of self-care n Learn more about looking after yourself and your kidneys n Get the best out of your appointments at your surgery You may wish to use the following words to explain your CKD to family and friends.

“My kidneys are not working as well as they should, and so are not filtering out as much waste from my blood. This results in changes to the way my body works and my general feeling of well-being. This is called chronic kidney disease and is a gradual process where my kidneys may continue to deteriorate over months or years. I have to watch my diet and blood pressure from now on.”

Acknowledgement: We would like to thank all those who have contributed to the production of this information booklet.

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Contents Frequently asked questions: What are the kidneys and what do they do?

What is kidney damage and how common are kidney problems?

What causes kidney problems and what tests might I need to have?

What will the results of the tests tell me?

Are my kidney problems curable and will my kidney problem have serious long-term effects?

08 What can be done to prevent kidney problems developing?

08 What do I need to know about my tablets?

04 04 07 07 08

Looking after your kidneys: 11 11 12 12 12 13 15 16

Decreasing your risk of severe kidney problems – by early detection Key Messages Blood Pressure Smoking Eating Well Keeping Fit Having a good appointment and some questions to ask Finding more information

Project supported by

What are the kidneys?

What is kidney damage?

The kidneys are a pair of bean-shaped organs roughly the size of your fist. They are located in the small of the back on either side of the spine.

Occasionally a person can be born with one kidney and they may never know.

Similarly, following kidney transplantation, only one kidney is working. In both these circumstances, the person can lead a normal life and function equally well with one kidney.

Kidneys can begin to become less efficient in a slow steady way after we reach middle age. Problems occur when something else happens to the kidneys, such as the effects of high blood pressure, which quicken this normal process.

Some of the terms used to describe kidney conditions include:

What do they do?

Clean blood

Blood with waste

Waste to bladder

The kidneys are very important to our well-being. They are responsible for:

n Filtering and removing waste and water from the blood (as urine via the bladder) n Cleaning the blood n Keeping the bones healthy n Looking after blood pressure

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n Kidney disease n Chronic kidney disease (CKD) n Kidney problems n Kidney damage n Acute kidney injury (AKI) The result of these problems can be minor or have more severe implications for us and our health. The important thing is to recognise when kidney damage gets worse.

Depending on the problem, early diagnosis and treatment can help slow down any damage to the kidneys. Because the kidneys are so efficient, it is usually a long time before there are obvious signs of something wrong.

This can sometimes mean that the kidney problem is only discovered when you are being examined for something else. Once kidney problems are identified, they can be investigated further and the necessary treatment started.

How common are kidney problems?

Recent research suggests that up to 7% of the adult population in the UK today are at risk of developing kidney problems. Only a very small proportion of people are affected by significant problems that can seriously affect how well their kidneys work.

Unfortunately your risk of having kidney failure is increased if you are from an African-Caribbean or South Asian background.

What the kidneys do: n Remove waste n Clean the blood n Ensure healthy bones n Look after blood pressure

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The five stages of chronic kidney disease: n Stage 1 - Kidney damage with normal or high eGFR* n Stage 2 - Kidney damage and mild decrease in eGFR* n Stage 3a - Mild to moderate decrease in eGFR* n Stage 3b - Moderate decrease in eGFR* n Stage 4 - Severe decrease in eGFR* n Stage 5 - Established renal failure * eGFR - estimated glomerular filtration rate.

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What causes What are the kidney problems? tests for kidney disease?

The commonest causes of kidney problems are: n High blood pressure and diabetes.

It usually takes many years of experiencing these conditions before the kidneys become affected. It is more common if the blood pressure or the diabetes has not been as well controlled as it should be. n Less common problems develop because of inflammation (glomerulonephritis) or infection of the kidney (pyelonephritis). n Sometimes kidney problems can be inherited, for example polycystic kidney disease. Kidney problems can also be the result of long-standing blockage such as an enlarged prostate or kidney stones. n Some tablets can cause kidney damage if taken regularly over a long time.

Examples are some pain-killing drugs such as ibuprofen (sold as Nurofen™). n Sometimes it is not possible to say what has caused the kidney problem and is therefore referred to as ‘not known’.

Urine tests A fresh sample of urine can be tested by the laboratory to show if it contains protein (called proteinuria or microalbuminuria).

Some urine tests (such as the test for blood in the urine) can be taken by a nurse without being sent to the laboratory. Either protein or blood in the urine might indicate kidney problems.

Blood tests The main way to check how well your kidneys are working is through a blood test. The test is called the estimated glomerular filtration rate (eGFR) and the result gives you a percentage of how much of your kidney is functioning.

For example an eGFR of 55 means that you have approximately 55% kidney function. It may sound serious to have just half of your kidney function working well, but do look at the chart below to understand the different stages of kidney damage.

What will the results of the tests tell me?

To help plan your kidney care, your kidney function will be assessed. Your health care professionals will then decide where you sit in the chart below:

Stage 1 - Kidney damage with normal or high eGFR

People at this stage have protein or blood in the urine but their eGFR is normal (greater than 90%).

Stage 2 - Kidney damage and mild decrease in eGFR

People at this stage have protein or blood in the urine but their eGFR is 60-90%.

Stage 3a - Mild to moderate decrease in eGFR

eGFR 45-59% means the kidneys are not working so well and you will need to have your kidney function checked every year.

Stage 3b - Moderate decrease in eGFR

eGFR 30-44% means the kidneys are showing further deterioration and you will need to continue to have your kidney function checked every 6 months.

Stage 4 - Severe decrease in eGFR

eGFR 15-29% means more marked kidney changes.

This is when you may be referred to a kidney specialist.

Stage 5 - Established renal failure (ERF)

eGFR less than 15% means that there has to be discussion about the possibility of active treatment in the future e.g. dialysis or transplantation.

Once the results of your urine and blood tests are known, health care professionals can then discuss with you any necessary treatment and how it will be monitored. Please be aware that for most people the kidney function remains stable and does not deteriorate. There are also many things you can do to help yourself to stop the kidney function getting worse (see pages 08-13).

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Are my kidney problems curable?

While such problems are not curable, the earlier the kidney problem is found, the better the opportunity to slow or stop any further damage occurring. More importantly, your involvement with your kidney care can have a significant impact on slowing damage and preserving your kidney function.

Will my kidney problem have serious long- term effects?

This depends on your age, other health problems and how serious the problems with your kidneys are. In addition, it depends on how involved you become in your care.

For the small number of people whose kidneys continue to get worse, there are a number of options that your doctor or nurse might offer. Most commonly the first step would be to review your lifestyle (weight, diet, exercise level, smoking), followed by prescription of tablets if required.

An important factor is how involved you become with managing the kidney problem. We sometimes call this self-management – working together with your doctor and nurse to help control the kidney damage. Of course your partner and/or other family members can be a part of this support should they wish to be.

Research shows that people who become partners in their care live longer. So, ask questions, and explore with your doctor and care team the best way for you to help yourself manage your disease.

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What can be done to prevent kidney problems developing?

Look after your heart and circulation, don’t smoke and avoid getting overweight.

Ask your GP about the need for regular monitoring of blood pressure and cholesterol.

If you have diabetes, then ensure that your blood pressure, sugar control, cholesterol and urine are regularly checked to make sure they are within the recommended ranges. It is also important that your kidney function is checked out with regular blood and urine testing at your GP surgery.

Also make sure that your blood pressure is checked regularly and you have regular blood and urine tests if you are on treatment for high blood pressure. If you have prescribed tablets for your blood pressure and you have any side effects, then report them to a health care professional and make sure you take the new medication as prescribed.

If you smoke, seek advice on how to give up. Consider asking for help from your doctor or nurse. They can often help direct you to appropriate self-management programmes, additional information resources and support groups.

What do I need to know about my tablets?

If you are unsure about any of your medication always ask your doctor or chemist what each tablet is for. Understanding how they help you makes it easier to get into a routine and remember to take them at the right time. If it helps you to remember when to take them, you can buy a dosette box. These organise your tablets in daily compartments, and some even have sections for different times of the day.

When you are first prescribed new tablets, ask your doctor or chemist if they are suitable for people with kidney problems. When buying ‘over the counter’ tablets always tell the chemist which stage of CKD you have as some tablets can be harmful to the kidneys.

Keep a list of your tablets with you in your purse or wallet to show to any new doctor or nurse you see.

If you have side effects (especially from blood pressure tablets) then do go back to the doctor/nurse rather than just stop taking them, as an alternative may be found.

Some tablets can affect other tablets, making them stronger or weaker. Your doctor will normally check for these interactions, but if you are away on holiday or you are seen by a locum doctor, this might not happen. Do ask the doctor who prescribes something new to you. If you forget to ask, speak with your chemist – they are always very helpful.

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Preventing kidney problems developing: n Look after your heart and circulation n Don’t smoke n Avoid getting overweight n Ask your GP about regular monitoring of blood pressure and cholesterol You are at risk of kidney damage if: n You have high blood pressure n You have diabetes n You have protein in your urine n You smoke 10

Decreasing your Key Messages risk of severe kidney problems by early detection You are at risk of kidney damage if: n You have high blood pressure n You have diabetes n You have protein in your urine n You smoke

Some people are at increased risk of getting kidney problems. These are people with: n Diabetes n High blood pressure n Vascular disease (e.g. previous heart attack, poor circulation in your legs or a history of stroke) n Family history of kidney disease n South Asian or African-Caribbean ethnic background The more of these risk factors you have, the more likely it is that you will be at risk of kidney damage. One of the first signs of kidney damage is when a small amount of protein (called microalbuminuria) is found in the urine. This is a very early sign of kidney problems, especially in those with diabetes and high blood pressure.

A small proportion of people may have symptoms of kidney damage such as: n Recurrent urinary infections (fishy smelling urine) n Protein in the urine (where urine appears frothy) n Blood in the urine (urine is pink or red) n Marked ankle swelling

What can I do about it? n Look after your blood pressure - ask your doctor or nurse about your blood pressure: the target is below 140 (top reading) and below 90 (bottom reading). If you have diabetes the target is below 130 (top reading) and below 80 (bottom reading). n Take blood pressure tablets as prescribed and report any side effects n If you have diabetes keep your blood sugar under control n If you smoke seek advice on how to give up n Reduce the salt in your diet n Provide a yearly urine sample to test for protein n Take more exercise Know your kidney numbers: n What stage kidney damage do you have? n Ask your doctor or nurse for the results of any tests you have, especially your eGFR test which tells you how well your kidneys are working Ask more questions.

These clues should be drawn to your GP’s attention for further management and treatment.

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Blood Pressure

Eating Well

General advice Avoiding high blood pressure is particularly important for people with kidney problems because it makes the heart work too hard and can speed up damage to the kidneys.

It makes the walls of the arteries hard and puts strain on the small blood vessels in the kidneys which can prevent the filtering process from working properly. Have your blood pressure checked regularly and note down your numbers.

General advice It is important that you try to eat a healthy, well-balanced diet. Tips for eating well are:

Know your blood pressure Blood pressure is the force of blood against the walls of arteries. Blood pressure is recorded as two numbers – the systolic pressure (as the heart beats) over the diastolic pressure (as the heart relaxes between beats).

Most people with kidney damage should have a blood pressure below 140 (top number) and below 90 (bottom number). If you have kidney damage and diabetes, the numbers should be below 130 (top number) and below 80 (bottom number).

Consider monitoring your blood pressure at home Buy a machine with an arm cuff rather than one which goes round your wrist. The arm cuff type automatically ensures that the blood pressure is measured at the right height, level with your heart.

The British Hypertension Society publishes a list of clinically validated monitors online at www.bhsoc.org/bp-monitors

Smoking Smoking is thought to have a number of effects on the kidney, particularly by raising blood pressure. This is known to increase your risk of cardiovascular disease, partly through the hardening and narrowing of your arteries, including those in the kidneys, therefore making any kidney damage worse.

If you smoke, seek advice on how to give up. Consider asking for help from your doctor or nurse. They can often help direct you to appropriate self-management programmes, additional information resources and support groups. There may also be ‘Stop Smoking’ clinics available in your area which are often free of charge.

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n Enjoy your food n Eat regular meals – do not skip breakfast! n Eat to be a healthy weight n Eat fruit and vegetables every day (5 a day if possible) n Base your meals around starchy foods (bread, cereals and potatoes) n Eat less salt Key Messages: n You do not need to have a special diet for stage 3a or 3b kidney damage, unless you have another condition such as diabetes. n A low-salt diet is recommended. A high salt intake is linked with high blood pressure and heart disease. To reduce the amount of salt you eat, try these suggestions: - Do not add salt to your food at the table.

- Try to cook without salt. There are lots of ways to add flavour to your cooking without using salt. You could add fresh or dried herbs to pasta dishes, meat, fish and vegetables or you could marinate meat and fish in advance to give them more flavour.

- Cut down on manufactured and processed foods. Try using fresh or frozen meat, fish and vegetables, rather than pre-prepared dishes or ready meals.

- If buying tinned vegetables, choose those labelled ‘no added salt’ or ‘reduced salt’.

- Do not use salt substitutes e.g.

‘Lo-salt’ as these products are not suitable for people with kidney problems. n Drink alcohol in moderation: 3-4 units a day for men and 2-3 units a day for women and older adults is recommended. One unit is the same as ½ pint of beer or lager, 1 small glass of wine or 1 pub measure of spirits.

We recommend you visit the following website for more information: www.edren.org/pages/edreninfo/ diet-in-renal-disease.php

Keeping Fit n There are no special exercises for people with kidney problems - all adults should try to be active every day. Some activity, however light, is better for your health than none at all. However, many daily activities such as housework are not sufficient on their own because the work isn’t hard enough to increase your heart rate. n To stay healthy or to improve health, all adults need two types of regular physical activity: 1. Aerobic exercise is exercise that makes your heart work harder. It makes your heart rate go up, you breathe harder and makes you sweat. Aim for 20 minutes of moderate aerobic activity each day; examples include brisk walking, cycling, swimming or pushing a lawn mower.

2. Also aim for muscle-strengthening activities on 2 days per week; examples include carrying loads such as shopping, digging the garden or dancing.

n It’s important to reduce the amount of time you spend sitting inactively – such as watching TV, reading or listening to music. n Discuss your keep fit ideas with your GP or practice nurse first. This is particularly important for those with heart conditions, with other conditions that affect their mobility and people at risk of falls. n The National Kidney Federation leaflet Staying Fit with Kidney Disease gives clear and detailed guidance on: - What type of exercise is best - How long to spend exercising - How often to exercise - How hard to exercise For a free copy, telephone the NKF Helpline on: 0845 601 0209, or see the NKF website at: www.kidney.org.uk/Medical-Info/other/ keepfit.html You can also find more information about healthy living on the Kidney Research UK website: at www.kidneyresearchuk.org/health

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Looking after your kidneys: what can you do? n Look after your blood pressure n If you have diabetes keep your blood sugar under control n If you smoke seek advice on how to give up n Reduce the salt in your diet n Provide a yearly urine sample to test for protein n Take more exercise Know your kidney numbers: n What stage kidney damage do you have? n Ask your doctor or nurse for test results, eg eGFR which tells you how well your kidneys are working n Ask more questions

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Having a good appointment Taking an active interest and sharing decision-making with your doctor and practice nurse can have an important impact on your health and well-being. Research shows that many people who share decision-making with their doctor and nurse experience these 5 benefits: n They feel happier because they feel more involved with their health care n They feel more informed because they are involved in making health decisions n They feel more confident when they understand more about the choices in front of them n They are more likely to stick with treatment that they have chosen themselves n They tend to be more satisfied with their medical care As appointments are often limited to ten minutes, it is a good idea to plan ahead.

Getting the most out of your ten minutes at the surgery: n Take a friend along: Don’t be afraid to take a friend of member or your family along, particularly if you would feel more confident, or want someone to help you remember what was said.

A few extra tips for when you visit your doctor or nurse n Write down your questions to take in with you; take a pen and paper so you can write down the answers too. n Be pleasant, but don’t get sidetracked by small talk. n Ask your most important question first in case you run out of time. n If you do run out of time make another appointment. n Repeat back the answers you hear so that you can make sure you understand them. n Be sure to get a meaningful answer that you will be able to explain to your family. n If you don’t know the meaning of a medical term, ask. n Ask if there is any written information you could take home. n Be as clear as you can when you have a problem. For example if you have a pain, try and explain where it is. Describe how long the pain lasts and what makes it better or worse. This helps your doctor or nurse to help you.

n Planning your questions: Asking questions encourages the doctor or practice nurse to: - Involve you more in your care - Work with you and make sure you have enough information to make good choices. What you want to know will obviously depend on your medical situation. Concentrating on three main questions to take with you can be very helpful.

What’s my situation/why am I going here?

This may be for test results, a regular review or a pain problem.

Why is it important to me?

Your kidneys may have shown some change or your blood pressure is up.

What can we do about it?

Note that the question asks “what can we do about it?” Don’t forget your care is a partnership between you and your doctor/nurse.

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Finding more information Asking questions and getting them answered by a health care professional or in a book or other reliable source is a key part of doing well with a long standing health problem. Ask your health care team to teach you about your condition and to give you any information they have. Never feel shy about coming to a clinic visit with a list of questions, and make sure you write down the answers. There are a number of websites that you can read or download from. The library is another option. Depending on the cause of your kidney problems, there may be another organisation that can help you.

Type your diagnosis into a search engine on the Internet to learn more.

Telephone help: National Kidney Federation British Kidney Patients Association (BKPA) NHS Direct (24 hours a day, 365 days a year) Kidney Research UK HEART UK Diabetes UK PKD Charity

01909 544 999 01420 541 424 0845 4647 0845 070 7601 0845 450 5988 020 7424 1000 0300 111 1234

Postal help: British Kidney Patients Association (BKPA) 3 The Windmills, St Mary’s Close, Turk Street, Alton GU34 1EF

Email help: National Kidney Federation BKPA Kidney Research UK HEART UK Diabetes UK PKD Charity

nkf@kidney.org.uk info@britishkidney-pa.co.uk enquiries@kidneyresearchuk.org ask@heartuk.org.uk info@diabetes.org uk info@pkdcharity.org.uk

Internet help: National Kidney Federation www.kidney.org.uk BKPA www.britishkidney-pa.co.uk NHS Direct www.nhsdirect.nhs.uk NHS Choices

www.nhs.uk Kidney Research UK www.kidneyresearchuk.org HEART UK

www.heartuk.org.uk Diabetes UK www.diabetes.org.uk Kids Kidney Research www.kidskidneyresearch.org PKD Charity www.pkdcharity.org.uk Making contact with local people with kidney conditions: Most main hospitals with dialysis or transplant units have a Kidney Patients Association (KPA) which can help people with kidney problems in a variety of ways. To find out if you have a KPA in your area, phone the NKF Helpline listed above, or use the search page on the NKF website at: www.kidney.org.uk/kpa/

HEART UK The Cholesterol Charity, 7 North Road, Maidenhead, Berkshire SL6 1PE

DVDs: There are a series of DVDs on Living with Kidney Disease available through Kidney Research UK. DVDs can be ordered direct from our online shop; please visit: www.kidneyresearchuk.org Alternatively, you can call Impress Publishing on: 01227 811 671 or email: kidneyhealth@kidneyresearchuk.org

Diabetes UK, Central Office, Macleod House, 10 Parkway, London NW1 7AA

If you’d like to see a preview of any of our DVDs please visit Kidney Research UK’s YouTube page.

National Kidney Federation The Point, Coach Road, Shireoaks, Worksop, Notts S81 8BW Kidney Research UK Nene Hall, Lynch Wood Park, Peterborough PE2 6FZ

Kids Kidney Research, 10 Beechwood, Southwater, Horsham, West Sussex RH13 9JU PKD Charity, 91 Royal College, London NW1 0SE

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