Living with kidney failure

Your kidneys remove fluid and waste products from your blood and when you have kidney disease, your kidneys no longer adequately remove waste.

Kidney disease is classified in several stages, depending on the level of remaining function. Once your kidneys have less than 10 per cent of function remaining, this is called end-stage kidney disease or kidney failure. If you have kidney failure, you need dialysis or a transplant to stay alive. However, some people choose neither of these treatment options, but opt for supportive or palliative care instead.

Choosing a treatment for kidney failure

Options for living with kidney failure are:

• unit-based haemodialysis – in a hospital or other dialysis unit
• home haemodialysis
• automated peritoneal dialysis (APD) – overnight dialysis at home while you sleep
• continuous ambulatory peritoneal dialysis (CAPD) – four fluid exchanges per day that you can fit into your everyday life
• kidney transplant
• supportive or palliative care – healthcare professionals support you, but your life will not be prolonged with dialysis when your kidneys fail completely.

Of the treatment options, managing your health with a kidney transplant offers the potential for a more active and longer life, and reduces the need for dietary and fluid restrictions. Unfortunately, a transplant is not suitable for everyone and there are not enough kidneys available for people who are on the waiting list. You will need to spend time receiving dialysis treatment while waiting for a suitable kidney.

Your choice of dialysis treatment may be influenced by factors including:

• personal lifestyle – work, family responsibilities, travel, leisure activities
• personal preference
• health and medical suitability.

If dialysis is needed, your healthcare team will discuss the benefits and disadvantages of the different options for you and your family. It is usually possible to change between types of dialysis if one treatment no longer suits you.

Home-based dialysis is less disruptive to your lifestyle. Peritoneal dialysis is continuous and gentler and this can help to maintain for longer any remaining kidney function you may have. Home-based haemodialysis offers people more flexibility than unit-based haemodialysis and the option of doing more fluid exchanges each week, which helps you to feel better.

Unit-based haemodialysis is supervised, but it requires transport to a hospital or clinic, and four to five hours sitting during dialysis at least three times per week.

Medical needs after kidney failure

Whatever your choice of treatment, you should always speak with your dialysis or transplant team about medication and lifestyle choices. It is important that you take your medication and do not vary the doses without speaking with your doctor.

You will need training for home dialysis options to make sure your dialysis sessions are successful and you reduce the risk of an infection at home. For some people who are unable to manage their own home dialysis, a carer can undergo the training to perform the dialysis techniques.

For transplants, long-term use of steroid medication or medication to suppress your immune system (immunosuppressants) require you to take extra care with your health. Speak with your doctor for advice.

Consider wearing a medical bracelet so people know that you are on dialysis or have a kidney transplant, and may need urgent medical help.

Mental health after kidney failure

Any major health problem is a life-changing experience and having kidney failure is no different.

Some people may feel fear, or have depression or anxiety, especially in the early days after beginning a new treatment or having transplant surgery. An important step is to ask your doctor or healthcare team for help.

Supportive healthcare professionals can provide psychological, behavioural and educational help. Healthcare professionals who can help include your doctor, a psychiatrist (medical specialist doctor), a clinical psychologist, a social worker, an occupational therapist or a counsellor.

Staying connected with family and friends, or joining a support group with other people who have a kidney-related health problem, can also help your physical and emotional wellbeing.

Although dialysis or transplant surgery after kidney failure can be challenging, many people go on to live active and productive lives.

Nutritional needs after kidney failure

Your dietary and fluid needs will vary, depending on the type of dialysis you are using. Ask your doctor or dietitian about nutritional and fluid needs to suit you and your treatment.

Peritoneal dialysis and home haemodialysis give you more freedom with what you can eat and drink, because the dialysis occurs more often. Supervised haemodialysis in a unit means you will need to take more care, especially with your fluids, because you will typically only have three dialysis sessions each week.

Eating a healthy diet is important for achieving and maintaining a healthy body weight, and this will improve your health on dialysis.

If you have had a transplant, maintaining a healthy body weight is important for keeping your transplanted kidney healthy. Excess body weight will put more strain on your kidney.

Exercise and leisure activities after kidney failure

To improve your mental and physical health, exercise and physical activity is recommended for everyone, including people on dialysis treatment and after a transplant. When combined with healthy eating, physical activity will help to improve the health of your heart and blood vessels, reduce stress and maintain a healthy body weight.

Dialysis can make you feel tired and make physical activity more of a challenge, but many people have been able to take part in regular sporting activity.

Home dialysis offers more flexibility to your daily routine, so it is easier to fit in physical activity. Peritoneal dialysis involves a tube permanently placed in your abdomen, so you should speak to your doctor if you are thinking about engaging in water sports.

If you have had a transplant, you should ask your healthcare team about exercise. After the surgery, it is best to start gently and ask your transplant team before you begin anything strenuous.

Getting back to work after kidney failure

Home dialysis gives you the greatest flexibility for returning to work, although some people return to work while having hospital-based haemodialysis. Overnight peritoneal dialysis leaves your entire day free for activities or work. Home haemodialysis can also be done overnight or in the evenings.

The CAPD form of peritoneal dialysis requires a clean and private area for bag exchange, which you can do at lunchtime. Most employers will support you.

After successful transplant surgery, you should be able to return to work, but speak with your doctor for advice about when to begin work and whether you need a change of duties.

Travel with kidney failure

Travelling while on dialysis takes some planning. For peritoneal dialysis, you will need to organise supplies and for haemodialysis, you will need to book a unit for your dialysis session at your travel destination in advance. Your dialysis team can help you organise this.

After transplant surgery, you should ask your doctor when you will be ready to travel and what precautions you should take. You should take a generous supply of your medication. If you plan to travel to a developing country, speak to your doctor about vaccinations, because your medication can affect your ability to have certain vaccinations.

Where to get help

• Your doctor
• Local community health centre
• Dietitian
• Kidney Health Australia Information Service Tel. 1800 454 363