Around three million people in the UK have kidney disease

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Approaching kidney failure

Approaching kidney failure

A diagnosis of advanced kidney disease or end-stage renal failure can often leave you feeling shocked and anxious about how your life might change.

It may also trigger a host of questions about your care and possible treatments which we hope to answer for you here:

 

What is a ‘pre-dialysis’ programme?

You may have been told that you have been put on a ‘pre-dialysis’ programme or referred to a low-clearance clinic. This means that you have been referred to a kidney specialist (nephrologist) who will head up a team of professionals who will work with you to help you decide what form of treatment will suit you best if your kidney function gets worse.

Treatments could include active supportive care (also known as conservative care), a form of dialysis, or a kidney transplant. They may also give you drugs to try to slow down your loss of kidney function and to treat complications such as anaemia (a low blood count), bone disease, and acidosis.

What drugs will I be given?

You may be prescribed drugs for high blood pressure, anaemia or bone disease, and given medicines to deal with symptoms such as itching, cramps, restless legs, nausea or shortness of breath. Additional drugs will also be prescribed if you go onto dialysis or have a kidney transplant.

You should also receive advice about taking ‘over the counter’ medicines and painkillers because some are unsuitable for people with kidney disease or kidney failure.

Will I have to stay in hospital?

You may occasionally need a short stay in hospital while tests are carried out but many tests can be done during an outpatient appointment.

You will need to be admitted to hospital for some things, e.g.:

  • to create a small fluid access point in your arm, leg or tummy (if you plan to go onto dialysis)
  • to have a kidney transplant operation
  • if any complications arise such as a serious infection

Who will help me adapt my diet?

A kidney dietitian will give you advice about the foods you can eat and those which may need to be avoided. But you should only restrict your diet if they advise you to do so. You may have to monitor your fluid intake too and dietary restrictions can also change if you go onto dialysis or have a kidney transplant. Don’t hesitate to contact them if you have any queries.

We’ve put together some dietary hints and tips to help you and included links to some free recipe books.

How can I be sure that I’m getting the right kind of care?

Wherever you receive your care (whether it’s in a hospital transplant unit, at a satellite kidney dialysis unit, in a privately run centre or in the community) it will be provided to the strict standards set by your local NHS trust. Kidney treatments and care provided on the NHS is also closely monitored by the UK Renal Registry which uses data to improve the lives of people with kidney disease.

Ask your kidney doctor to explain all the treatment options available to you and then take time to reflect on what might suit your particular needs, priorities and lifestyle better. If you have any queries or don’t understand anything don’t be afraid to ask.

Each stage of your treatment will be planned and discussed with you and your family and your preferences will be taken into account wherever possible. Visits to your local dialysis unit can also be arranged before any treatment starts so you can get a clear understanding of the different options available to you.

Most dialysis centres practice team nursing; this means that if you choose to have dialysis, you are likely to see members of the same team of people on each visit and hopefully get to form a good working relationship.

Alternatively, you may decide to choose active supportive care (conservative care) (where the symptoms of kidney disease are managed to keep a person’s kidneys working for as long as their kidney disease allows). This care may be given in hospital, at home or in your local community (for example, day care services at your local hospice). You may prefer this option if you are at a stage in your life where you feel that this type of care may outweigh the benefits of having dialysis or a transplant.

All treatment options are explained in our Dialysis Decision Aid Booklet.

How will dialysis affect my job?

You may have to modify your job to fit around your dialysis requirements, or you may find you have to give up work altogether in the short-term. However, some people continue to hold down full-time jobs throughout their dialysis treatment.

 

How much will my treatments cost?

You won’t have to pay anything for your in-patient, outpatient or home-based care but you may have to pay for prescriptions and other costs such as hospital car parking fees.

If you are likely to need more than one prescription item a month it’s probably worth getting a special Prescription Pre Payment card which will save you money. Speak to your kidney unit’s social worker if you have any queries or concerns about finances. They will be able to give you lots of advice, including information about any benefits available to you.

Anxiety and depression are common in patients with advanced kidney disease. Your mental health is just as important as your physical health, so make sure you speak to your kidney doctor or nurse if you have any worries about any aspect of your kidney disease. They may also be able to refer you to a professional counsellor.

 

Will my life ever be the same again?

Kidney failure can have a major impact on your life but in most cases you should be able to choose a treatment that best suits your lifestyle, personal priorities and needs and enables you to get on with your life.

Many people find that they can maintain control of their lives by becoming experts in managing their kidney disease. To find out how you can do this too visit our ‘How can I help myself?’ section.

Useful links

  • Over the counter medicines for kidney patients
  • Analgesics and kidney disease
  • Continuous ambulatory peritoneal dialysis
  • Haemodialysis
  • Choosing not to start dialysis

Reviewed April 2019

The need for more research

Research into how to prevent kidneys going ‘from bad to worse’ could prevent lots of people being faced with difficult decisions about kidney replacement treatments. We also need more research to help professionals ensure that each patient can choose treatments that best fit their lifestyles.

Patient stories

David and Jenny Griffiths

"I feel that research is important to find ways to control my disease so that I could live a more normal life and work and provide for my family."

David Griffiths

Our life-saving research is only possible with your support.

Save lives.