Chronic kidney disease - Living With

Living with-Chronic kidney disease

Most people can live a largely normal life with chronic kidney disease (CKD).
Although it's not possible to repair the damage that has already happened to your kidneys, your condition won't necessarily get worse. 
Kidney disease only reaches an advanced stage in a small proportion of people.
But even if your condition is mild, it's important to take good care of yourself to help stop it getting worse and reduce your risk of other health problems, such as cardiovascular disease.
See below for advice about some of the main issues regarding living with kidney disease.

Looking after yourself

Take your medication

It's very important that you take any prescribed medication, even if you don't feel unwell. Some medicines are designed to prevent serious problems occurring in the future.
It's also useful to read the information leaflet that comes with the medication about possible interactions with other medicines or supplements.
Check with your care team if you plan to take any over-the-counter remedies, such as painkillers or nutritional supplements. These can sometimes affect your kidneys or interfere with your medication.
Also speak to your care team if you have any concerns about the medication you are taking, or if you're experiencing any side effects.

Have a healthy diet

A healthy, balanced diet can help improve your general health and reduce your risk of developing further problems.
A balanced diet should include:
You may also be given advice about dietary changes that can specifically help with kidney disease, such as limiting the amount of potassium or phosphate in your diet.

Exercise regularly

Regular physical activity can also help improve your general health.
Don't be scared to exercise. Exercise is good for anyone with kidney disease, however severe. 
Not only will it boost your energy, help you sleep, strengthen your bones, ward off depression and keep you fit, it may also reduce your risk of problems such as heart disease.
If you have mild to moderate kidney disease, your ability to exercise shouldn't be reduced. You should be able to exercise as often and as vigorously as someone the same age as you with healthy kidneys.
If your condition is more advanced or you're already on dialysis, your ability to exercise is likely to be reduced, and you may become breathless and tired more quickly.
But don't be deterred – exercise is still beneficial. Make sure you start slowly and build up gradually. Check with your doctor before beginning a new exercise programme.

Stop smoking

If you smoke, stopping smoking can improve your overall health and reduce your risk of many other health problems.
Speak to your GP or an NHS stop smoking service if you think you'll need help quitting. They can provide support and, if necessary, prescribe stop smoking treatments.

Limit your alcohol consumption

You may still be able to drink alcohol if you have kidney disease, but it's advisable not to exceed the recommended limits of more than 14 alcohol units a week.
Speak to your GP or care team if you find it difficult to cut down the amount of alcohol you drink.

Get vaccinated

Kidney disease can put a significant strain on your body and make you more vulnerable to infections.
Everyone with the condition is encouraged to have the annual flu jab and the one-off pneumococcal vaccination.
You can get these vaccinations at your GP surgery or a local pharmacy that offers a vaccination service.

Regular reviews and monitoring

You'll have regular contact with your care team to monitor your condition.
These appointments may involve:
  • talking about your symptoms – such as whether they're affecting your normal activities or are getting worse
  • a discussion about your medication – including whether you think you might be experiencing any side effects
  • tests to monitor your kidney function and general health
It's also a good opportunity to ask any questions you have or raise any other issues you'd like to discuss with your care team.
You may also want to help monitor your condition at home – for example, by using a home blood pressure monitor.
Contact your GP or care team if your symptoms are getting worse or you develop new symptoms.

Relationships and support

Coming to terms with a condition such as kidney disease can put a strain on you, your family and your friends. It can be difficult to talk to people about your condition, even if they're close to you.
Learning about kidney disease often helps because you and your family will understand more about what to expect and feel more in control of the illness, instead of feeling that your lives are now dominated by kidney disease and its treatment.
Be open about how you feel, and let your family and friends know what they can do to help. However, do not feel shy about telling them that you need some time to yourself, if that is what you need.

Get support

Your GP or care team can reassure you if you have questions about your kidney disease, or you may find it helpful to talk to a trained counsellor, psychologist or specialist telephone helpline operator. Your GP surgery will have information on these.
Some people find it helpful to talk to other people with kidney disease at a local support group or through an internet chat room.

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Sex and pregnancy

Sex

Having kidney disease can affect your sexual relationships. Some couples become closer after a diagnosis of kidney disease, while others find their loved ones are affected by worries about how they'll cope with the effects of the illness.
Both men and women may experience issues about body image and self-esteem, and this can affect the relationship.
Problems such as erectile dysfunction and reduced sex drive are also fairly common in people with kidney disease.
Try to share your feelings with your partner. If you have problems with sex that do not get better with time, speak to your care team. Treatment and support is available.

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Pregnancy

If you have mild to moderate kidney disease, it's unlikely your condition or its treatment will affect your chances of having children.
More advanced kidney disease may affect women's periods and reduce a man's sperm count, which can make it more difficult to get pregnant, although this doesn't mean you won't be able to have a child.
It's important to use contraception if you don't want to get pregnant.
If you do want to try for a baby, it's a good idea to speak to your care team for advice first. There may be risks to mother and baby, and changes to your treatment or check-ups may be necessary.

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Work, finances and benefits

Can I continue working?

If you're well enough, you can keep working for as long as you feel able.
Talk to your employer as soon as you feel your condition is affecting your ability to do your job so you can find a solution that suits both of you. For example, it may be possible for you to work part-time.
The Disability Discrimination Act 1995 requires employers to make reasonable adjustments to working practices or premises to help a person with a disability.
This might, where possible, include changing or modifying tasks, altering work patterns, installing special equipment, allowing time off to attend appointments, or helping with travel to work.

What happens if I can no longer work?

If you have to stop work or work part-time because of your kidney disease, you may find it hard to cope financially.
You may be entitled to one or more of the following types of financial support:
  • if you have a job but cannot work because of your illness, you are entitled to Statutory Sick Pay from your employer
  • if you don't have a job and cannot work because of your illness, you may be entitled to Employment and Support Allowance
  • if you're aged 65 or over, you may be able to get Attendance Allowance
  • if you're caring for someone with kidney disease, you may be entitled to Carer's Allowance     
  • you may be eligible for other benefits if you have children living at home or a low household income

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Holidays and insurance

If you have mild kidney disease or you've had a transplant, going on holiday shouldn't pose additional health problems, whether you're staying in the UK or going abroad.
The British Kidney Patient Association can support people with kidney disease wanting to get away for a break.
Speak to your care team before you travel, and make sure you bring enough medication with you to cover your trip and some back-up medication in case you end up needing to stay away from home for longer than planned.
If you're on dialysis, you can still enjoy holidays provided you book your treatment before you go away.
If you want to travel to another part of the UK, discuss your plans with your renal unit as early as you can so they can arrange dialysis at a unit close to your destination.
In many parts of the country, the lack of facilities restricts the freedom of patients to travel, but Dialysis Freedomruns a holiday dialysis "swap" scheme to help with dialysis availability in other areas.
If you're going abroad, it can be easier to arrange dialysis at short notice as some overseas centres have more facilities, although holiday destinations may get booked up early.
The NHS will look after you if you get ill while on holiday in the UK. If you're in Europe, the European Health Insurance Card (EHIC) entitles you to free or reduced-cost hospital treatment.
It's a good idea to take out holiday health insurance in addition to carrying the EHIC. Anyone with kidney disease should declare it as a pre-existing medical condition on standard insurance application forms. It may exclude you from some policies. 

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