Chronic kidney disease - Living with chronic kidney disease

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 are 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 nurse 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.

Want to know more?

• Read more about advice for new patients
• Kids Kidney Research: Personal stories

Money and finances

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 do not have a job and cannot work because of your illness, you may be entitled to Employment and Support Allowance
• if you are aged 64 or under and need help with personal care or have walking difficulties, you may be eligible for Disability Living Allowance
• if you are aged 65 or over, you may be able to get Attendance Allowance
• if you are 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 if you have a low household income

Want to know more?

• National Kidney Federation: Benefits for renal patients and carers
• Kidney Patient Guide: Finances
• Money Advice Service

Sex and pregnancy

The symptoms of kidney disease and the stress it causes in your life can affect your sexual relationships.

Some couples become closer after a diagnosis of kidney disease, while others find that their loved ones are affected by worries about how they will 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.

Try to share your feelings with your partner. If you have problems with sex that do not get better with time, speak to a counsellor or sex therapist.

People on dialysis often experience specific sexual difficulties. Loss of sex drive in both men and women and impotence in men are commonly reported problems.

Treatment is available, but it may take some time and requires commitment from both partners. The first step is to discuss it with your healthcare team.

Want to know more?

• National Kidney Federation: Sex problems with renal failure

Pregnancy

Both men and women with early stage kidney disease will find their fertility is unaffected. This means it is important to use contraception unless you want to have a baby.

Later stage kidney disease may affect women's periods, which can make pregnancy more difficult. For men, later stage kidney disease can cause a reduction in sperm count. However, having kidney disease does not mean you will not get pregnant or be able to father a child, so both men and women need to use an effective method of contraception unless they want to have a baby.

Women who want to have a baby should talk to their renal specialist or an obstetrician with an interest in kidney disease. Depending on the stage of kidney disease, there can be risks to both the mother and the baby. It is important to minimise any risk with a planned pregnancy. Your healthcare team can advise you about this.

Want to know more?

• National Kidney Federation: Pregnancy with kidney failure and on dialysis

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.

If you’re on dialysis, you can still enjoy holidays provided you book your treatment before you go away.

If you're on dialysis and want to travel, discuss your plans with your renal unit as early as you can. It can sometimes be more difficult to arrange dialysis in the UK than it is abroad. 

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. 

Want to know more?

• National Kidney Federation: Health insurance for kidney patients

Using over-the-counter medicines

Some remedies are potentially harmful for people with kidney disease. Make sure you check with your doctor before taking a new over the counter medicine.

You’re at higher risk of being harmed by certain over the counter remedies if:

• you have advanced kidney disease (stage 4 or 5, or a kidney function below 30% of normal)
• you have mild-to-moderate kidney disease (stage 3 with a kidney function between 30 and 60% of normal) and are elderly with another serious illness, such as coronary heart disease

What's safe and what's not

Summarised below is a list of which over the counter remedies are safe for people with kidney disease to use and which should be avoided. This is just a guide. For more detailed information, consult your pharmacist, renal specialist or GP.

Headaches

Paracetamol is safe and the best choice of painkiller to treat a headache, but avoid soluble products as they are high in sodium. If your kidney function is less than about 50%, avoid painkillers containing aspirin, ibuprofen or similar drugs such as diclofenac. These products can deteriorate the function of damaged kidneys. Low-dose aspirin of 75-150mg a day can be used if it's prescribed for the prevention of vascular disease. You should also avoid ibuprofen if you're taking anti-rejection treatment following a kidney transplant.

Coughs and colds

Many of the products available for coughs and colds contain a mixture of ingredients, so check the packaging carefully. Some products contain paracetamol, which is safe, but others contain high doses of aspirin, which it's best to avoid.

Many cold remedies also contain decongestants, which you should avoid if you have high blood pressure. The best way to clear congestion is by steam inhalation with menthol or eucalyptus. For coughs, try a simple linctus or glycerine honey and lemon to soothe your throat.

Muscle and joint pains

If you have muscle or joint pain, it's ideal to use topical preparations (applied to the skin), which are rubbed on to the painful area. Avoid tablets containing ibuprofen or similar drugs such as diclofenac if your kidney function is below 50%. Ibuprofen gel or spray is safer than ibuprofen tablets, but it isn’t completely risk-free as a small amount of the drug penetrates the skin into the bloodstream.

Kidney failure

About 1% of people with stage three CKD develop kidney failure, also called established renal failure (ERF). Kidney failure has a major impact on your life and the lives of those close to you. People diagnosed with kidney failure usually go through shock, grief and denial before they accept their condition.

Choices if you have established renal failure

If you have established renal failure (ERF), you will need to decide whether to have treatment with dialysis or a kidney transplant. You may decide to have neither treatment and to have supportive care. These choices should be made with your healthcare team.

For people who want active treatment for their ERF, a transplant would be the best option. However, a transplant is only suitable for about half of all people with ERF. This is because they may have had recent cancer or are not physically fit.

Many people who have slowly progressive kidney failure and other serious health problems, and who are usually older, may choose to avoid dialysis. Supportive care can still allow you to live for some time with a good quality of life.

Want to know more?

• Kidney Patient Guide: The emotional effects of kidney failure

Transplant

A kidney transplant, when suitable, is the best treatment for ERF. The transplanted kidney can be obtained from a deceased or living donor and survival rates are now extremely good. About 90% of transplants still function after five years and many transplants work usefully after 20 years. The main reason people have to wait for a transplant is the shortage of available donors.

Over a third of kidney transplants are now from live donors. A live donor kidney can be transplanted before the need for dialysis, rather than after a period of time on dialysis.

One major risk after transplantation is rejection, where the immune system attacks the donated kidney because it mistakes it for a foreign object. This is prevented with the use of strong drugs to suppress the immune system. These drugs need to be taken meticulously. They are usually well tolerated but may have side effects, including an increased susceptibility to infections and some forms of cancer. For this reason, transplant patients are given regular reviews in a specialist transplant clinic.

Want to know more?

• Read more about kidney transplants
• National Kidney Federation: Transplantation
• Kidney Patient Guide: Transplants

Dialysis

Dialysis can take place at home or in hospital. It involves filtering the blood of waste products and excess water. It is not as efficient as a human kidney, so people with kidney failure usually need to restrict their intake of fluid and certain foods. They also require additional medicines such as iron supplements, phosphate binders and antihypertensive medicine (to reduce blood pressure). There are two types of dialysis: peritoneal dialysis and haemodialysis.

Peritoneal dialysis

The abdomen (tummy) has a lining called the peritoneal membrane, which can be used as a filter to remove excess waste and water. If you have opted for peritoneal dialysis, a tube (catheter) will be inserted into your abdomen during an operation. This will allow you to drain dialysis fluid in and out of your tummy yourself. You will not need to go into hospital to be treated, but you will have to spend an hour or two each day draining the fluid. The treatment involves either four exchanges spaced out during the day, each taking half an hour, or attaching yourself to a machine overnight that pumps the fluid in and out for you.

Haemodialysis

Haemodialysis removes waste products and excess fluid that build up in the body when the kidneys stop working. Blood is taken from the body to be cleaned in a filter known as a dialyser. It is effectively an artificial kidney. The whole process takes about four hours and usually has to be repeated three times a week. Most people go into hospital to have haemodialysis. However, some people choose to have the treatment in their own home.

Home haemodialysis will give you more flexibility, but comes with greater responsibility. You’ll need to have the space in your home for a dedicated machine and, in most cases, a lot of support from a close family member or friend. Some people choose to have their dialysis at night while they are asleep. Most people who choose home haemodialysis have it every day, so their fluid intake is not as restricted.

Quality vascular access

During haemodialysis, it is important that large volumes of blood are passed through the machine. This requires special measures to get into large enough blood vessels. For this reason, haemodialysis patients need a minor operation to join one of the deep arteries to a superficial vein (called a fistula). This is carried out in day surgery and should be done at least six weeks before dialysis is required because it needs time to mature before it can be used.

Occasionally, there will be insufficient time for a fistula to be created before dialysis is required. In this case, a temporary solution is found, usually involving the use of an indwelling plastic dialysis catheter. A catheter is a surgical tube inserted into the body to allow for the transfer of fluid.

All the issues will be discussed in detail with you by the dialysis team before any decisions are made.

Want to know more?

• Read more about dialysis
• National Kidney Federation: Haemodialysis
• National Kidney Federation: Peritoneal dialysis
• Kidney Patient Guide: Dialysis