For most people with chronic kidney disease (CKD), there is only a mild or moderate reduction in kidney function with few symptoms. However, it can develop to a more serious stage where the kidneys no longer work. This is called kidney failure.
Around 10% of people with CKD may reach a stage that is known as established renal failure when the kidneys can no longer work well enough to keep us healthy and alive. At this point, support from dialysis treatment or a kidney transplant is considered.
Remember: It’s never too late to review your choice of care and you can even change your treatment. Always talk to your kidney care team for good advice.
A kidney failure diagnosis
Being diagnosed with kidney failure can be a very worrying time for patients and their families. It marks the beginning of a life-long ‘career’ as a kidney patient and starts a journey of decision making about treatment choices.
One of the best things you can do before making any decisions about your treatment is to find out as much as you can about what choices are available to you locally, what choices will suit the way you live your life and whether you want to travel for holidays.
Everyone’s choices are personal and depend on many things besides their kidney disease – such as whether you’re working or retired and whether you want to be involved in your own care or like to be cared for in a hospital setting.
The sooner you find out about what choices are available to you, the better, as it gives you more time to talk through your decisions with the kidney care team and your family.
It’s really important to get to know all the kidney care team at your hospital, as they are the ones best placed to help you choose which treatment is right for you and your lifestyle.
You will be given a personal care plan by your kidney care team, and this is planned between you and the team. It lists all personal choices and the stages of your individual treatment and care over the following months.
Deciding on treatment
There are lots of factors that might affect your treatment decisions, including the cause of your original kidney problem, the lifestyle you enjoy, work, home, family and other influences. Many of the choices lie with you and if your kidney unit cannot provide every treatment option, you may want to think about your place of care or what compromises you are prepared to make.
Kidney transplant: Transplantation is the best treatment for the majority of patients with established renal failure. A kidney transplant extends life expectancy, improves quality of life and offers freedom from dialysis.
Dialysis: Dialysis is way of artificially removing waste products and unwanted water from your blood. You can choose between:
- Haemodialysis (HD) where blood is washed through a machine either at home or in hospital.
- Peritoneal dialysis (PD) where fluid is passed into your abdomen up to four times a day, or overnight at home.
No dialysis: Some patients choose a path called conservative treatment rather than treatment with dialysis. This may suit people with other medical conditions who feel dialysis is not for them.
This is the most successful treatment for kidney failure. Donated kidneys come from two sources: the national deceased (cadaveric) donor pool, or from a living donor.
Kidneys from living donors offer the best chance of success overall and prevent the need to join the national transplant waiting list. One in three kidney transplants in the UK is now performed from a living donor, either between close family members (blood relatives) or between non-blood relatives, including partners and friends.
It is important to talk about living donation with your friends and family. If you have someone willing to donate a kidney, but they cannot be matched to your blood group and tissue type, there is now a national scheme called ‘paired donation’, which aims to match living kidneys across transplant centres around the UK.
Some units are also developing methods that allow transplantation despite differences in blood groups. Some units can offer treatment to remove the antibodies from the blood in order to make a transplant possible between an incompatible donor and recipient.
One in three kidney transplants in the UK are from living donors
A kidney transplant before starting dialysis (known as a pre-emptive transplant) is the gold standard of choice, as patients can avoid the need for dialysis altogether and the kidney is likely to last longer.
If you are interested in finding out more about living donation, it is best to talk to a transplant coordinator who will explain the processes and options to you. Donors can also talk in confidence to members of the transplant team before committing to donation.
Unfortunately, not everyone is suitable for renal transplantation, particularly those with multiple other medical conditions, or older people. All patients need to have tests to ensure they are fit enough to receive a transplant, and some may need particular medical conditions to be treated. If you are overweight or obese you might need to lose some weight before you can have a kidney transplant.
During haemodialysis, blood flows out of your body, round a dialysis machine, and through a dialyser (artificial kidney) which cleans it, and it is then returned to your body. This can be done at home, in a ‘satellite’ haemodialysis unit near your home, or in a dialysis unit in a main hospital.
You will need a small operation to create a ‘fistula’, which is where an artery is joined to a vein, so that the vein can be made bigger to allow dialysis needles to reach your bloodstream.
This is usually done six months before you start dialysis to give it time to enlarge. But they can usually be used safely after about six weeks if necessary. If you need dialysis before a fistula is made, you may have a temporary dialysis line (a small plastic tube) put into a large vein in your neck.
A fistula operation is usually done 6 months before you start dialysis
Standard haemodialysis is usually for around four hours three times a week on alternate days. A growing number of patients are now opting for self-care dialysis within the unit or home haemodialysis, which can offer more independence, either with daily nocturnal dialysis or conventional dialysis three times a week at home.
Patients are trained for home haemodialysis by the kidney care team to manage their own treatment, and technical support is always available if it is needed.
Patients who do home haemodialysis insert the dialysis needles into their fistula themselves or have a spouse, relative or partner trained to do it for them.
This type of dialysis involves putting a small, soft, plastic tube called a catheter into your abdomen (tummy area), which allows dialysis fluid to be drained in and out of what is called your peritoneal cavity.
Waste products are passed from your blood and are absorbed by the dialysis fluid. When the fluid is drained out it takes the waste and extra fluid out of your body.
This can be done either by hand four times a day via a process called continuous ambulatory peritoneal dialysis (CAPD), or by machine overnight in a process known as automated peritoneal dialysis (APD).
CAPD takes about 20 to 30 minutes to drain the fluid in and out and needs to be done four times a day. APD takes place for eight hours overnight and needs 30 minutes to set up and clean the machine before and after each treatment.
The best way to make a choice about which dialysis treatment will suit you is to talk to the staff and to other patients about their decisions and what they like and don’t like about their treatment choice. It is usually possible to change your type of dialysis if you want to after some planning.
Some patients would rather not have any treatment for their kidney failure. Many units now have a dedicated team of nurses who are able to provide support and care for these patients and their families.
It is important to remember that dialysis and transplantation is not for everyone, and that people have the right to choose not to be treated.
Patients who choose not to have dialysis are usually managed in the same way as other patients with CKD until the point at which the kidney fails. At this point, the priority of care changes to relieving the symptoms of kidney failure and managing its complications.
Where can I find more information about kidney failure?
There are lots of helpful materials that provide information about different types of treatment and its impact on health and lifestyle.
They are available from charities like Kidney Care UK, as well as from your kidney unit and the NHS website.
Some units also have peer support groups where you can speak to other patients who have been through similar experiences.