If you would like to discuss your kidney diagnosis with our trained members of staff ring the free to call number 0800 169 0936.

The NKF Helpline is available Monday to Thursday 08:30am - 5:00pm Friday 08.30am – 12.30pm on 0800 169 09 36 or email [email protected].

WHAT IS END STAGE RENAL DISEASE?

End stage renal disease is loss of kidney function to a point where they have failed and this becomes life threatening. Less than 1 in 10 people with kidney disease get kidney failure and this is the last stage of kidney disease. End stage renal disease usually develops slowly, as Chronic kidney disease (CKD) progresses over a period of months or years. The rate of progression depends on ethnicity, underlying diagnosis, control of blood pressure and diabetes. However, very few people with CKD ever develop renal failure. In some people kidney failure can develop suddenly, which is called acute kidney injury. Also, someone with CKD may get acute kidney injury if they develop a severe infection or other unexpected illness.

HOW TO COPE WITH END STAGE KIDNEY DISEASE

If this is a new and sudden diagnosis, most people will feel shocked, even if they already know they have some kidney disease. It is totally normal to be upset and confused, and at first to try and deny what is happening.

Many centres have special clinics to support people who are getting close to end stage kidney disease. 

GETTING SUPPORT AND COPING STRATEGIES

People often find it a challenge to manage end stage kidney disease on their own; support from family, friends or hospital staff is important. No-one wants to be a burden on anyone else, but hiding feelings from family and friends may make it more difficult in the long term.

If you think you may need help from social services, or be entitled to financial allowances, talk to the social worker attached to your kidney unit.

Every kidney unit will also have a counsellor who can help support you through this process emotionally; coming to terms with the diagnosis, impact on your body image or relationships.

People cope with end stage kidney disease and have enormously successful lives, but it is not easy and everyone has to overcome problems from time to time. Every person copes in a different way; there is no ‘formula’ to make it easy. Some coping strategies that can be helpful include having an activity (eg a hobby) to turn to; setting goals (eg I will go to that wedding!); keeping up as many normal routines a possible. Understanding your disease and taking an active part in your treatment helps.

MAKING CHOICES ABOUT DIALYSIS AND TRANSPLANTATION

Every person with end stage kidney disease will make choices about the type of treatment that is best for them. It is best to plan in advance. Putting off decisions until the last minute may mean more complications or a longer stay in hospital than is necessary.

Planning in advance does mean having to commit to a particular line of treatment, which can be very daunting. Information, support and having time to make the best choices will be enormously helpful. As well as seeing a doctor in clinic, it can be helpful to talk to nurses on the kidney unit (many units have a nurse who specialises in pre-dialysis care), and to someone who has had dialysis, who can be contacted through the kidney unit at the hospital, or through the local kidney patients' association. 

TREATMENT FOR END STAGE KIDNEY DISEASE

To stay as well as possible, everyone should stop smoking, lose weight if they are overweight, keep active and eat a healthy balanced diet, with advice as appropriate from their renal dietitian. It is important to control blood pressure, cholesterol and diabetes. Medications commonly prescribed as you approach end-stage renal disease:

• Erythropoetin (EPO) is very helpful in treating anaemia, which is common in many people with kidney failure.
• Iron levels need to be optimised for EPO to work and treat anaemia.
• Sodium bicarbonate, to neutralise blood as it tends to become acidic as the kidney function falls. Acidic blood can also contribute to your potassium levels running high.
• Active Vitamin D helps balance of calcium, phosphorous and parathyroid hormone levels. This is vital to manage loss of minerals from bones.
• Phosphate binders, which you take with meals, help prevent the build-up of phosphate which combines with calcium to damage the blood vessels. Examples are calcium carbonate, sevelamer and lanthanum.
• Diuretics, such as furosemide or bumetanide to help pass more salt and water in your urine. This helps reduce pooling of water in your legs and lungs. 

There are 4 main treatment options available for end stage kidney disease:

KIDNEY TRANSPLANT

The best treatment for kidney failure in those fit enough for the operation. The best type of transplant, if possible, is from a living donor, given just before dialysis would be needed.

PERITONEAL DIALYSIS

Uses a tube in the tummy. Fluid is passed in and out of the tummy 2-4 times a day at home, or overnight at home using a machine. The technique uses the natural membrane lining your abdomen to filter toxins out.

HAEMODIALYSIS

You are connect to a machine which cleans your blood and returns it, normally in three sessions a week. Can be given in hospital as an outpatient, in a local 'satellite' unit, or at home.

SUPPORTIVE, OR CONSERVATIVE CARE

Some people may not be fit enough to pursue a kidney transplant and may choose not to have dialysis at all. This may suit older people with other medical problems and slowly progressive kidney failure, who wish to maintain their present quality of life.

Last reviewed April 2022
Next review April 2025
Reviewed by Dr Oshini Shivakumar 'Specialist Renal Registrar'

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The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.