As ADPKD progresses or gets worse, the size and number of the kidney cysts increases. Eventually the cysts begin to affect how the kidneys function, and chronic kidney disease (CKD) develops, which may result in kidney failure.
Kidney failure is the most common worry for people with ADPKD. But not everyone develops kidney failure, and the rate that ADPKD progresses varies greatly even between close relatives. While half of people with ADPKD aged over 60 have kidney failure, a third of people reach age 70 without their kidneys failing completely. Some people with ADPKD can live a normal life, without needing kidney dialysis, despite losing up to 80% of their kidney function.
It is currently impossible to predict who will develop kidney failure and when this will occur. However, your doctor can assess your rate of disease progression by regularly checking your kidney function. You can also take some actions yourself to slow disease progression and preserve your kidney function for as long as possible.
‘Chronic’ means a condition that is long term and does not get better, but it does not always mean that it is serious. So chronic kidney disease (CKD) describes any abnormality in kidney function, even if the kidneys may only be slightly damaged.
Guidelines for doctors from NICE say that people who have relatives with ADPKD should be offered testing for CKD. You may also be offered testing for CKD if you have:
CKD should never be diagnosed based on a single test. Instead, your doctor should only diagnose CKD after at least three tests done over at least three months.
Doctors divide CKD into five stages, according to the percentage of your remaining healthy kidney function. Your stage will be based on your estimated glomerular filtration rate (eGFR) and other problems you may have.
Glomerular filtration rate (GFR) is a measure of how much fluid your kidneys can filter in a minute. There are a number of ways to measure GFR but in clinical practice, it is estimated based on the creatinine levels in your blood, your age, gender and ethnicity. This estimate or eGFR is roughly the same as % function. So an eGFR of 90 is roughly 90% kidney function.
|1||90 or more||Normal kidney function (90% or more)|
|2||60-89||Slightly worse than normal kidney function|
|3A||45-59||Slight to moderately worse kidney function|
|3B||30-44||Slight to moderately worse kidney function|
|4||15-29||Kidneys are functioning much worse than normal|
|5||Less than 15||Kidneys are at risk of failure or have failed|
NICE says that anyone who is at risk of CKD should have their kidney function checked at least once a year—and people with ADPKD certainly fall into this category!
Otherwise, how often your kidney function is tested depends on the stage of CKD:
|1 and 2||Over 60 and other signs of kidney damage||Every year|
|3A and 3B||30-59||Every six months|
|4||15-29||Two to three times a year|
|5||Less than 15||4 times a year but could be more often|
Your doctor may suggest that you are tested less often if your eGFR stays about the same over several years. Alternatively, your eGFR may be checked more often if it seems to be falling more quickly.
CKD is progressing rapidly or getting worse if your eGFR falls by:
Remember that it is normal for eGFR to change slightly between tests. So do not be surprised if the change is large enough to move you from one stage of CKD to another and then back again.
If your eGFR suddenly falls, your doctor should test you again within two weeks to rule out other causes of kidney damage, such as certain drugs or acute or short-term injury to your kidneys.
There is currently no cure for ADPKD, but you may be able to slow disease progression and protect your kidneys. Follow these links for more detailed information on:
The NICE (National Institute for Health and Care Excellence) produces information on the management of Chronic Kidney Disease (CKD) that summarises, in plain English, the recommendations that NICE makes to healthcare and other professions.
Written by the PKD Charity.
With thanks to all those affected by ADPKD who contributed to this publication.
Contact us for the version of this factsheet with scientific references.
IS Ref No: ADPKD.P.V1.0
© PKD Charity 2018
First published 2018
Due to be medically reviewed 2021
Disclaimer: This information is primarily for people in the UK. We have made every effort to ensure that the information we provide is correct and up to date. However, it is not a substitute for professional medical advice or a medical examination. We do not promote or recommend any treatment. We do not accept liability for any errors or omissions. Medical information, the law and government regulations change rapidly, so always consult your GP, pharmacist or other medical professional if you have any concerns or before starting any new treatment.
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