Just diagnosed with Chronic Kidney Disease - where to now?
Sometimes kidney failure can happen quickly, caused for example by a sudden loss of large amounts of blood or an accident. A sudden drop in kidney function is called Acute Kidney Failure and is often short-lived but can occasionally lead to lasting kidney damage. More often kidney function worsens over a number of years. This is good news because if kidney disease is found early, medication, dietary and lifestyle changes can increase the life of your kidneys and keep you feeling your best for as long as possible.
If you have lost over one-third of your kidney function and the loss persists for over three months, it is called Chronic Kidney Disease (CKD). Sometimes kidney disease leads to kidney failure, which requires dialysis or a kidney transplant to keep you alive. Dialysis or a kidney transplant is needed when the kidneys have stopped working. Dialysis removes waste products from the blood when the kidneys fail. There are two forms of dialysis - haemodialysis and peritoneal dialysis. During haemodialysis, a machine acting as an artificial kidney cleans the blood. Peritoneal dialysis (PD) allows the blood to be cleaned inside the body. Transplantation is a treatment for kidney failure but is not a cure.
What do kidney test results mean?
 Test results or clinical values can be grouped to show how well your kidneys are working. Creatinine is a waste product made by the muscles. It is usually removed from the blood by the kidneys and passes out in the urine. When the kidneys aren’t working well, creatinine stays in the blood.
The normal level for blood or serum creatinine is less than 120μmol/L for males and 90μmol/L for females. A blood test helps to work out how quickly your kidneys remove or ‘clear’ creatinine from the blood. Creatinine is a good measure of kidney function as it does not change with diet. However it does vary with age, gender and body weight so is not an accurate way of measuring overall kidney function.The results of these tests are called clinical values.
These groupings are only a guide and results may be outside these ranges.
- Stage 1: A small amount of kidney damage but GFR is often normal. Kidney function is between 50 – 100% of normal. A normal GFR is greater than 90 mL/min.
- Stage 2: Mild kidney damage so there is a slight drop in GFR to between 60 – 89 mL/min.
- Stage 3: Moderate kidney damage so blood pressure increases. Chronic kidney disease can be diagnosed as GFR falls to 30 - 59 mL/min.
- Stage 4: Severe kidney damage and GFR is very low at 15 - 29 mL/min.
- Stage 5: Kidney failure occurs and GFR is less than 15 mL/min.
Many factors affect the progress of kidney failure and these are not completely understood. If you have kidney disease, it is important to work with your health care team and follow their advice to slow down its progress. See our publication Living with Reduced Kidney Function.
Treatment is a choice
Learning about kidney failure treatment is an important part of deciding which treatment choice is best for you. Hospitals offer education sessions that give you and your family time to ask questions and talk to others.
There are three choices of treatment for kidney failure:
- Dialysis: haemodialysis or peritoneal dialysis
- Kidney transplant
- Conservative or supportive care without dialysis
Some people feel they have to start or continue any treatment offered to them. However your decision should be an informed one. You may wish to refer to more detailed info in Chapter 4 - Choosing a dialysis treatment from our booklet Living With Kidney Failure or our fact sheet Choosing whether to have treatment.
Considering conservative or supportive care without dialysis is part of this decision making process, even if it is discussed and put aside. It is wrong to continue to put someone on an artificial life support if it is against his or her wishes. In fact, a number of Australian states have laws to ensure people have the right to decline or stop treatment. In reality, it is difficult to make such decisions and is often hard for family or medical staff to accept. It can be helpful to involve a family member, close friend, social worker, minister, or spiritual leader. You may wish to invite your doctor to be a part of the discussion.
It is important to realise that finding out you have kidney failure can be a shock and cause a strong emotional response, which clouds judgment – making the future look unreasonably gloomy. If a person is experiencing emotions like depression or anxiety and finding it difficult to make a decision, professional help is available via a psychologist, psychiatrist, social worker or counsellor.
What does dialysis do?
Dialysis helps to maintain your body’s balance by:
- Removing waste and extra fluid from the blood
- Keeping the blood’s chemical balance at a safe level
- Assisting with blood pressure control
They are both useful and important treatments and the choice of treatment is influenced by many factors including:
- Personal preference
- Your health and medical suitability
- Your lifestyle
- Availability of resources
- Where you live
- Finances e.g. travel costs
 You need to weigh up the advantages and disadvantages of each type of dialysis before making a decision. Talking things over with your health care team and your family can help you reach a decision. If over time you find that your treatment choice no longer suits, you may be able to change options.
There are medical issues that can influence the choice of dialysis. For instance, PD may not be possible if you’ve had major abdominal surgery causing scarring. It may also be difficult to obtain the right amount of dialysis with PD if you are tall and muscular, or overweight. HD requires good access to your bloodstream, which may be an issue if you have diabetes. If you have heart problems, the changes in blood pressure and waste levels associated with HD can cause problems.
Decisions about your body are your responsibility. The health care team can provide guidance but you’re the one in control. It is important to get to know your health care team and build a strong working relationship. Open communication about your physical and emotional health as well as your lifestyle needs can help you get the most out of your treatment.
You may wish to read Kidney Failure Treatment Options (available from Renal Resouce Centre Sydney)
Peritoneal Dialysis
PD occurs inside your body using the peritoneal membrane as a filter to help clean the blood. A membrane is a fine layer of tissue with a rich blood supply. The peritoneal membrane lines the peritoneal or abdominal cavity and covers the organs such as your stomach, liver, spleen and intestines. It provides an ideal filter for the removal of waste products and excess fluid. There are some advantages of choosing PD, including fewer dietary restrictions. The blood is being constantly cleaned so steady blood chemistry is maintained. It is also done at home so there is less need to travel for treatment.
 Access to the peritoneal cavity for dialysis is via a PD catheter, which is a soft plastic tube about 0.5 cm in diameter inserted into your body during surgery. It stays in your body for as long as PD is needed. Some of the catheter is on the outside of your abdomen (belly). This allows dialysis fluid, a special fluid that helps to clean your blood, to be moved in and out of your body painlessly. The catheter may seem strange at first, but most people become used to them quickly. The tube is usually put below and to one side of your navel. This is called the exit site. You and your health care team will decide on the best location. The tubing can be worn comfortably and easily hidden under clothing.
How PD Works The peritoneal cavity is filled with dialysate (dialysis fluid) through the catheter. The amount of solution used for each exchange depends on your body size and individual needs. Children need smaller amounts than adults. Most adults can hold between two to three litres of fluid. Diffusion removes extra wastes from the blood and draws it into the dialysis fluid. A process called osmosis draws out extra fluid from your body. Extra fluid moves from your blood and is then transferred to the dialysis solution. After a certain time, the solution is drained out of the body, carrying the waste products and excess fluid, and is then replaced with fresh solution. Each time this cycle is repeated is called an exchange. The number of exchanges performed each day varies for each person. PD supplies are delivered to your home and must be stored in a clean, dry area. This storage area needs to be big enough to hold a month’s supply of solution bags.
There are two types of PD The type you choose will depend on the number of exchanges needed, and other factors such as your body size, lifestyle, lab results and if you can manage the dialysis steps. You may start with one sort and change to another, or use a combination of both.
Continuous Ambulatory Peritoneal Dialysis (CAPD)
In CAPD exchanges are usually done four times a day, but the number can vary. As the word ambulatory suggests, you can walk around with the dialysis solution inside your body. Each exchange takes about 30 minutes to perform and can be done almost anywhere, as long as a clean area is available. During an exchange, a sterile dialysis solution bag is connected to your catheter. By raising the solution bag above shoulder level, the solution flows into your peritoneal cavity under the influence of gravity. The solution bag is disconnected and dialysis begins straight away. The dialysis solution remains in your body for four to six hours, which is called the dwell phase. During this phase there is no bag attached to your catheter, so you can go about your usual activities.
Some people find that having dialysis fluid left in their body during the dwell phase is uncomfortable. They feel full, bloated and may have back pain. Their belly area may be stretched and become rounded. Most people adjust to feeling full, and if it continues, you can discuss it with your healthcare team. Speaking to your doctor about some exercises to strengthen the lower back can also be helpful. At the end of the dwell phase a drainage bag is connected to your catheter and lowered to the floor to drain the used fluid. Another solution bag is then attached, and fresh solution is put into your peritoneal cavity to start the process again.
Automated Peritoneal Dialysis (APD) During APD a machine called a cycler does the exchanges for you. Each night your catheter is attached to the tubing of the cycler. The cycler does several exchanges, controlling the movement of fluid in and out of your body while you sleep. During the day, solution is left in your body so that dialysis can still occur slowly. An advantage of APD is that most of the work of dialysis is done while you sleep, freeing up time during the day for other activities.
Haemodialysis
During HD, your blood travels to a dialysis machine, where it passes through a special filter called a dialyser before being returned to your body. The dialyser removes waste and helps to balance fluid, minerals and chemicals in your blood. The dialyser is a plastic cylinder containing thousands of very fine tubes. Blood is pumped into the dialyser and flows through the fibres. Each tube has tiny pores in its walls big enough for waste and extra fluid to pass through, but too small for blood cells and proteins. A special fluid called dialysate washes around the fibres. The dialysate does not come into direct contact with your blood. However, it interacts with your blood to balance the various salts and other chemicals, returning them to normal range. The dialysate also helps to draw waste and excess fluid out of your blood across the pores of the fibres, leaving cleansed blood to flow back to your body.
There are some advantages to choosing HD, including having some days off from treatment as it usually done three times a week. It can also be done at home or at a dialysis unit.
How HD works During each treatment you sit next to the haemodialysis machine. Two needles attached to soft tubing are put into your vascular access point - one takes blood to the machine, the other returns blood. When you start the dialysis session, a local anaesthetic is usually used to numb the area before needles are inserted. A pump on the machine helps to move the blood through the tubing and the dialyser. Your blood is returned at the same rate that it is removed. You won’t feel weak through lack of blood as only about 300ml, or about one cup, is out of your body at any time. HD is not painful and the rate at which your blood is cleaned depends on your length of treatment. Sometimes you can feel a little bit sick or dizzy and have muscle cramps after dialysis. Quick removal of a large amount of fluid, or a drop in your blood pressure, can cause this reaction. Activities are limited during dialysis. You can read, talk, play board or card games, watch television, write, use a computer or sleep but usually you cannot get up and move around.
Haemodialysis locations It is important to be as independent and active as you can while on HD. Treatment at home or in a limited care or ‘satellite’ renal unit is encouraged whenever possible. Dialysis in a hospital renal unit is for those with other serious health problems who need immediate access to medical care while dialysing.
Limited care centre haemodialysis If you need some help and there is no one to help at home, dialysing at a ‘limited care’ centre or ‘satellite’ renal unit is a good option. In these centres dialysis is usually performed three times a week. Dialysis usually lasts about four to five hours during which your blood is cleaned about six times. However, this routine can vary.
Home haemodialysis If you choose home HD, you are trained to manage your own dialysis. Special plumbing is installed in your house, and the quality of the water supply is tested. If needed, a friend, carer or partner can also be trained to assist you. You can choose to dialyse during the day or in the evening. Some hospitals offer nocturnal dialysis, which is dialysing while you sleep. Nocturnal dialysis usually means dialysing at home up to six nights a week for eight hours each night.
Access for Haemodialysis For HD to be carried out, a large blood vessel with a fast blood flow needs to be accessed. Unfortunately there are no large blood vessels located where they can be easily used so a ‘vascular access’ point is made during surgery. ‘Vascular’ refers to your blood vessels, e.g. arteries and veins.
There are three types of access:
- An Arterio-venous fistula (AVF), which is permanent
- A prosthetic or artificial, which is also permanent
- A special catheter, which can be long-term, but is usually temporary until a fistula or graft is ready for use
Common vascular access problems It is important to immediately report any changes to your access to your health professional team. When the blood flow in an access is not moving properly, there is a chance the access may stop working and require urgent surgery. Even if you are very careful, sometimes problems such as a blood clot or an infection can occur. Always seek advice from your doctor or dialysis staff, as the problem will not go away by itself.
Dialysis and other treatment options - links to other information websites of interest
Kidney Transplantation
A kidney transplant is another treatment for kidney failure but it is also not a cure. Transplantation allows people a chance to get their lives back, free from dialysis. Donated kidneys come from either a live donor - usually a relative, spouse or even a close friend - or from deceased donors.
The average waiting-list time for a kidney transplant is four years and only a small percentage of patients on dialysis will be offered a transplant. A transplant is successful in 90 per cent of cases, offers a more active life, free from dialysis as well as food restrictions, however the new kidney requires a lifetime of management and care and anti-rejection medication.
- A kidney transplant is not a cure but another type of treatment for kidney failure.
- Kidney transplants can come from live or deceased donors.
- The surgery for live and deceased donations is the same. However live donations
can be planned.
- There are two types of surgery for live kidney donors, open nephrectomy and keyhole.
- To prevent rejection your transplanted kidney needs a lifetime of care including medication.
As information regarding this subject is extensive, read more at Chapter 5 - Kidney transplants and refer to our Health Fact Sheets: Deciding about live donation - Kidney Transplantation - Life with a single kidney - Live Donation - Organ and tissue donation and transplantation
Other links of interest covering treatment options are:
Choosing whether to have treatment Chapter 6 from KHA's Living with Kidney Failure
From Me To You - So Your Relative Needs a Kidney? Renal Resource Centre Australia
Introduction to Kidney Transplantation Booklet - Renal Resource Centre Australia
Kidney transplants - Chapter 5 from KHA's Living with Kidney Failure
Making a Decision about Living Organ and Tissue Donation derived from "Living Organ and Tissue Donation: Guidelines for Ethical Practice for Health Professionals"
Organ allocation protocols for kidneys TSANZ - How the system works for the allocation of kidneys
Conservative Treatment
Conservative or no treatment uses diet and medication to manage kidney failure. Your health care team and maybe a palliative care team, support you to live as independently and as well as you can in the face of serious illness.
It can be easier to make a decision about treatment when you are informed. Learning about kidney failure treatment is an important part of deciding which option is best for you. Hospitals offer education sessions about dialysis and transplantation. These sessions give you and your family time to ask questions and talk to others in a similar situation. Your doctor can also provide information about treatment, including conservative treatment. Talking to a social worker, counsellor or your spiritual adviser can also be helpful.
Depression may be linked to kidney failure and can cloud judgment, making the future look gloomy. If you think you are depressed it is important to talk to someone as depression can affect your decision. Professional help and appropriate treatment may be needed.
Death from kidney failure is usually painless and pain medicine can be prescribed for any discomfort. Without
treatment, you become increasingly tired as wastes and fluid buildup. This buildup can make it more difficult to breathe so oxygen and diuretic medication can be provided.
You have the right to refuse treatment. However, the decision to refuse treatment for kidney failure eventually leads to death.
Choosing not to start dialysis Dialysis often causes major changes in your life but most people find ways of dealing with the hassles and new challenges, particularly if they are otherwise in good health. If you are unsure, it is possible to try dialysis for a short while to see how things go. Sometimes other conditions make dialysis more complicated and it may not improve your quality of life greatly. You have the right to decline treatment if you think that the burden of dialysis will be greater than the benefits.
 Choosing conservative or supportive care without dialysis is not an uncommon decision for people who have been on dialysis for a long time, particularly those who are elderly. Some people who would like to consider conservative or supportive care, worry about letting their families, staff and other patients in the renal unit down. However, although it is important to consider the feelings of others and explore options, you should make the final decision.
While your family and friends may be sad, most will be aware of the reasons and respect your decision. You may wish to read
Withdrawing from Dialysis Treatment from the Renal Resource Centre Sydney.
As a transplant fails, some people may choose conservative or supportive care rather than return to dialysis, particularly if they have other complications such as dialysis fistula (access) problems.
Preparing for conservative care or supportive treatment
If you decide on this path - you, your family, or your medical team need to make sure that your affairs are in order, for example:
- Make sure you have a Will
- Consider having a Medical Power of Attorney
- Consider having an Advanced Directive, an Anticipatory
- Direction or an Enduring Power of Guardianship
- Make a list of your financial records including bank accounts, real estate, insurance policies, etc.
- Provide contact details of people who can help settle your estate e.g. solicitor, accountant and executor of your Will
- Let people know about your choice of funeral services
Quick links Health Fact Sheets - Health Publications - Organ Donation - Recommended weblinks
Updated 9 July 2010
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