Everything you need to know about living well with chronic kidney disease
If you are wondering, ‘what is chronic kidney disease?’, this guide explores what causes chronic kidney disease, what chronic kidney disease symptoms you may experience, and chronic kidney disease treatments you may be offered. Remember, you are not alone, and there are many sources of support available to you.
If you are concerned about any of the symptoms or information you read here, please consult your GP.
Around 3 million people in the UK have some form of chronic kidney disease, which is an umbrella term for various renal diseases.
Chronic kidney disease is a long-term condition and occurs when one or both kidneys are damaged or simply not working as they should. There are many types of chronic kidney disease, with symptoms that vary in severity depending upon the amount of damage that has occurred. Many people have a mild case with few risks to their overall or future health, whereas other people may have a more severe case that has progressed and needs a lot of professional healthcare support.
Many people may have chronic kidney disease without knowing it and diagnosis of chronic kidney disease often occurs after the person has lived with the condition for some time or as a result of being tested for other health complaints.
Chronic kidney disease may occur as a person ages, so is more prevalent in the older population aged 75 and over.
There is currently no cure for chronic kidney disease but there are ways that the condition can be treated to alleviate symptoms and ensure it does not get any worse. Chronic kidney disease treatment options may include dialysis, transplant and medication.
Most people are born with two kidneys. The kidneys work together and have a number of functions within the body. They are responsible for removing waste, regulating blood pressure, producing vitamin D, and filtering fluid. They remove urine from the body and filter all the waste from our blood. The blood then goes back to the heart and waste is removed through urine. It is therefore essential for the kidneys to function normally, in order to keep this process working correctly.
The National Kidney Federation offers a helpful description of where the kidneys are and more details about what they do.
A person with a chronic kidney disease diagnosis is likely to have had an illness, experience a recurring illness, or have a current, long term health condition that has led to the kidneys enduring more stress and strain than they are designed to cope with.
This does not mean to say that if you have any of these conditions, you will get chronic kidney disease, but just that they present an additional risk factor. Many people with chronic kidney disease will have experienced multiple conditions through their lives that have affected their kidney capability and function. Some of the above conditions run in families, and it is possible to be born with a kidney abnormality that leads to chronic kidney disease.
Lifestyle factors may also be causes of chronic kidney disease, and increase a person’s risk of kidney problems developing.
The following are risk factors for chronic kidney disease:
• Unhealthy eating
• Drinking excessive amounts of alcohol
• Lack of exercise
• Overuse or long term use of painkiller medication
Around 20% of people with chronic kidney disease are diabetic, so it is really important for people with diabetes to manage their condition and be aware of chronic kidney disease symptoms to ensure their kidneys are functioning healthily.
Diabetes is caused by the body being unable to break down glucose, because the body does not produce enough insulin, or insulin is not doing its job properly. High levels of glucose mean that the kidneys filter too much blood, which sometimes leads to the glomeruli being affected, or the main artery that leads to the kidneys becoming furred. Diabetics are also at more risk of contracting urinary tract infections due to their condition, which can also increase the risk of chronic kidney disease developing.
If you are diabetic, don’t panic – most people with diabetes do not get chronic kidney disease, but it may put you at a higher risk. If you have any concerns about your kidney health, consult your GP or diabetes specialist. Find out more about diabetes and kidney health from Kidney Care UK or get in touch with Diabetes UK.
There are many diseases that sit under the umbrella of ‘chronic kidney disease’. For a comprehensive list of all types of chronic kidney disease, visit the National Kidney Federation website, which explains these in detail. There are generally considered to be five stages of chronic kidney disease, which are defined by the level of kidney function a person has. Most people who have been given a chronic kidney disease diagnosis are living with stages 1-3. Their quality of life is good, and they can manage their condition with regular healthcare checks and support. They are likely to continue to stay in these earlier stages, and may never progress on to later stages.
A person suspected to have chronic kidney disease, or who has already received a diagnosis of chronic kidney disease, will have regular blood tests to check their Glomerular Filtration Rate (GFR). The stages of chronic kidney disease below are diagnosed according to the level of kidney function, determined by a person’s GFR
• Stage 1 – The mildest type of chronic kidney disease, diagnosed if a person has a GFR of 90 or over, which means kidneys are functioning normally but other tests indicate early or possible chronic kidney disease
• Stage 2 – Diagnosed if a person has a GFR of 60-89, which suggests the kidneys are affected, with a small amount of dysfunction
• Stage 3 – GRF of 30-59 falls into type 3, which means kidney function is moderate
• Stage 4 – This stage and the one following it are much more serious. Stage 4 patients will have a GFR of 15-29 which means kidney dysfunction is quite severe and it is quite likely the kidneys will fail, which specialists will plan for
• Stage 5 – Kidney function is very severe and the person is classified as having end stage kidney failure.
Everyone with a form of chronic kidney disease will experience their condition differently, depending on what causes chronic kidney disease in their case. Chronic kidney disease causes few symptoms in its earliest stages. This makes it quite difficult to detect early, and many people only find out they have chronic kidney disease as a result of tests conducted for other reasons or as routine tests due to their existing health conditions. Some people report that they feel generally unwell or ‘not quite right’, have less appetite than normal or feel tired. Many people do not feel any different to normal.
If you are diagnosed with early stage chronic kidney disease, it is important to remember that there are many ways to help manage your condition and help you stay well. It is very likely your chronic kidney disease will not progress to later stages.
Symptoms of chronic kidney disease when it is in the later stages (stage 4-5) may include:
• Feeling tired
• Feeling short of breath
• Feeling sick
• Finding blood when you pass urine or needing to pee a lot
• Swelling of the hands, ankles or feet
• Erectile dysfunction and reduced sex drive
• Loss of appetite
• Losing weight
• Strange sensations such as itching of the skin
• Cramps in the muscles
If you think you or someone you know may have any of the symptoms of chronic kidney disease listed here, it is important not to panic but to visit your GP to discuss further. The symptoms you have may be the result of a number of other factors or minor health conditions.
If your doctor suspects you may have the condition, the next step to a confirmed diagnosis of chronic kidney disease will be a blood test and urine test. You may also be referred for a scan on your kidneys or in some cases, a kidney biopsy.
For more information about symptoms of chronic kidney disease, or how it is diagnosed, visit the NHS website.
Others who are in later stages of the disease may need support and may be offered dialysis treatment, which is likely to have a big impact on their life and daily activities.
Read on to find out more about chronic kidney disease treatment options, products that may help with daily tasks, eating for chronic kidney disease, exercise for chronic kidney disease, and other factors such as employment options.
There are ways to treat chronic kidney disease so that a person with the condition is able to live well.
There is currently no cure for the condition, but research continues to try and understand how it develops and to improve treatments. Read more about research projects funded by the charity Kidney Research UK.
Treatment for chronic kidney disease in the earlier stages is likely to focus on ensuring a healthy lifestyle, i.e. stopping smoking, reducing alcohol intake, eating a healthy diet and getting more exercise. Later, we provide advice on eating a healthy diet for chronic kidney disease, and exercise for chronic kidney disease.
Your doctor may also look at getting other problems that have contributed to the development of chronic kidney disease, under better control e.g. high blood pressure or high cholesterol. You may be offered medications to help with this and should be regularly monitored to ensure your kidney function is not worsening. The National Kidney Federation provides a list of commonly prescribed drugs for a variety of chronic kidney disease symptoms.
Treatment for chronic kidney disease in the later stages, or for end stage kidney failure, will require much more extensive treatment and may have a much more intense impact on your daily life. Not everyone will get to this stage, and only a relatively small number of people will get to the point where their kidneys no longer work on their own.
People who have end stage kidney failure may require dialysis which is a special process that does the work that a person’s kidneys can no longer do.
There are two types of dialysis:
• Peritoneal dialysis: This involves a permanent catheter being inserted into your stomach through surgery, which is used to transfer fluid into the stomach. The fluid is supplied in a bag which connects to the stomach tube and gravity helps the liquid flow into the body, in order to cleanse the blood of waste products. The fluid, with the waste, then flows back into the bag and this can be thrown away. This is often done at home, and sometimes while you are asleep. It has to be done each day.
• Haemodialysis: This involves being physically connected to a dialysis machine, either at home or hospital, usually around 3 times a week. A dialysis machine takes blood from the body, cleans it, removing waste and fluid at a controlled rate, and then returns it to the body. This usually takes about 4 hours.
For more information on dialysis options, visit the NHS website
If a person has kidney failure, they are likely to have to remain on dialysis, unless they have a kidney transplant. Not everybody is suitable for kidney transplant surgery, and your specialist will assess your suitability. People that wish to have a transplant and are considered a suitable candidate will be put on a waiting list for a kidney from a deceased donor, or may wish to consider a living donation. This is where another person agrees to donate one of their kidneys, if they are considered a suitable match. Many donors are family or friends, but more and more people are becoming altruistic donors and donating through kidney sharing schemes.
To find out more about kidney transplantation, visit the Kidney Research UK website.
There are products available to help with lots of healthcare and daily activities. If you are finding daily tasks difficult due to having later stage chronic kidney disease or dialysis, you may find that daily living aids can help you. Healthcare Pro are experts in daily living aids, and we have a team of occupational therapists that can advise what products can help you undertake certain activities in and around the home.
Here, we list a variety of products that you may find useful if you are finding certain symptoms of your condition, or the after effects of dialysis, are making daily tasks more challenging. We also provide ideas on simple daily living aids that may assist you with other tasks, as well as exercise equipment
This is not an exhaustive list, and if you are looking for products that may help you, we have a team of Occupational Therapists at Healthcare Pro who can talk you through the best products to suit your needs. Contact them by Email: [email protected] or telephone 0345 121 8111. You may also wish to make contact with the Disabled Living Foundation, a charitable organisation that provides advice and information about equipment for people with disabilities.
PLEASE NOTE: our Expert Advice Service can only give advice about equipment and products which may help you to live more independently. They cannot give any advice on medications or treatments for symptoms of this condition.
Many people with a diagnosis of chronic kidney disease are able to work and certainly in the earlier stages of the disease, they may have few symptoms that affect their working life, although they may need time off to attend regular healthcare appointments.
People who have more advanced chronic kidney disease are still able to work, and may find that working helps their wellbeing and sense of identity. However, for those who are undertaking regular dialysis, continuing to work may present some challenges. For example, they may need to take time out of the working day to attend dialysis appointments, or to dialyse at home; or they may experience after-effects of dialysis that make it difficult to continue working or concentrate properly.
If you are unsure what your rights are as an employee with chronic kidney disease, the UK Government provide advice about what to do if you become disabled, and adjustments that employers must take to ensure you are not disadvantaged due to your condition.
Some people choose to leave their employment and focus on their health. Each person will find a solution that suits them, and there are chronic kidney disease support workers to help you with decisions such as this.
Kidney Research UK offer further advice about how dialysis may affect your employment.
It is important for all of us to eat a healthy diet and undertake regular exercise. This can help prevent or reduce our risk of some healthcare conditions developing in the first place. It is really important for someone with a chronic kidney disease diagnosis to live a healthy lifestyle and the first step in this is eating healthily.
The NHS provide information on eating a balanced diet. In addition, you may be given specific advice about reducing the levels of minerals and salts in your diet, such as potassium, phosphate and calcium. This is because your kidney dysfunction is likely to affect how your kidneys are managing the balance of these products in the body.
If you are undergoing dialysis, you will be given a strict chronic kidney disease diet to follow. The Kidney Dialysis Information Centre provides details about managing your diet if your kidneys have failed.
Some people choose to look at natural remedies and supplements for chronic kidney disease. We recommend talking to your doctor before taking any chronic kidney disease supplements such as vitamins, minerals, herbs, etc.
If you need information or advice about following a chronic kidney disease diet, speak to your GP or dietician.
If you need inspiration on how to change your cooking to reduce salts and about eating for chronic kidney disease, check out The Kidney Care Cookbook.
Undertaking regular exercise is important if you have chronic kidney disease. Exercise helps the whole body function to its best ability, making it stronger and more resilient. If you are overweight, losing weight through exercise will help your body and reduce the strain on your kidneys. You may wish to discuss with your healthcare team how to start or improve your exercise regime, and a physiotherapist can help devise a programme of exercises for chronic kidney disease.
Even when experiencing kidney failure and undergoing dialysis, most people are able to undertake some form of exercise. Research suggests that exercising during dialysis actually helps the process work more effectively! Read more about this from the Chartered Society of Physiotherapists. Many dialysis centres have exercise equipment available for you to use, but you may wish to consider purchasing your own pedal exerciser.
For further advice about staying fit, and exercise for chronic kidney disease, visit the National Kidney Federation website.
There is a lot of help for chronic kidney disease patients. Chronic kidney disease is fairly common and as such, there are many charities and organisations offering support networks and sources of advice about all aspects of living with chronic kidney disease. Many people find it helps them to live well with their condition if they have places to go, and people to talk to for support, advice and reassurance. Being open and talking about your condition may help you to feel more positive. Hearing other people’s stories may also help.
Here, we list some online communities and places you can go for more support for chronic kidney disease.
Dialysis and Kidney Disease Support Page – a Facebook support group for people experiencing kidney disease to share stories and make connections for chronic kidney disease help
Kidney Care UK National Advocacy Service – provides kidney disease support over the telephone and in person
Kidney Patient Guide – this forum enables kidney patients and people who care for them to share information, stories and feel supported
Disabled Living Foundation – a charity that provides advice and information on independent living and equipment that can assist people with a disability
infoKID – providing information for parents and carers of children with kidney conditions
Kidney Cancer UK – a charity providing support for adults and children with kidney cancer
Kidney Care UK – a charity supporting kidney patients and providing sound financial assistance
Kidneys for Life – A UK charity based at the Renal Unit of Manchester Royal Infirmary, which raises money for kidney disease research, treatments and patient support services, and education
Kidney Patient Guide – Information about living with kidney disease and failure, including quotes from people living with the condition
Kidney Research UK – the leading charity funding kidney disease research, which also provides health information and patient support materials
Kidney Wales - a charity in Wales that supports Welsh patients and seeks to educate people about kidney disease
NHS – provides information on all medical aspects of chronic kidney disease, with access to other related topics about health and wellbeing
National Kidney Federation – the largest kidney patient charity in the UK, run by kidney patients, offering a wealth of information and advice
Polycystic Kidney Disease (PKD) Charity – charity supporting people with PKD, raising awareness of the condition and funding research
World Kidney Day – a collaboration between several kidney charities, aiming to raise awareness of kidney health and kidney disease
Although we always try to explain things as simply and as clearly as possible, sometimes it’s necessary to use the correct medical terminology.
Medical terms are often known for being tricky to pronounce, and if you’re not an expert in the subject, they can also be a little difficult to understand. Below, we’ve put together a list of terms used on this page along with a brief explanation of what they mean to help make your understanding of chronic kidney disease as straightforward as possible.
An inherited condition that causes cysts to develop inside the kidneys
Medical procedure of removing fluid and waste products from the kidneys when kidneys no longer work properly
Complete failure of kidney function, which will require dialysis or kidney transplant
In men, the prostate helps make semen and is positioned under the bladder, around the urethra, and it can become enlarged causing problems peeing
Tiny blood vessels inside the kidney that filter blood and waste
Damage to the tiny blood vessels in the kidney, caused by the immune system attacking tissue, and part of other conditions such as lupus
Tests the function of the kidneys to find out if a person has kidney disease, by assessing blood creatinine alongside factors such as age, to determine how the kidneys are functioning
Tissue from the kidneys is removed in a minor procedure using a needle
A common occurrence where substances that travel through the kidneys, such as calcium, build up and create crystals or lumps that can cause pain or infections
Referring to the kidneys
Taking an organ or living tissue from one person and surgically implanting it in another person
An infection in the bladder, kidneys or urethra, which forms the urinary tract, and causes symptoms such as pain when peeing or frequent peeing