You might notice signs but not know they’re from ADPKD. As your cysts grow, your kidneys can't always keep up with the body’s demands. Kidney damage builds up, even though kidney function looks normal. Eventually, the damage is too much, and the kidneys slowly stop working.
How do doctors measure kidney function?
- Doctors use GFR, or glomerular filtration rate, to assess how well your kidneys are filtering your blood. You've probably talked to your doctor about your creatinine levels. Doctors estimate your GFR by using a blood test to measure how much creatinine—a waste product—you have in your blood
- When creatinine levels go up, GFR goes down. The higher your GFR, the better your kidneys are working. Doctors use GFR to determine at what stage of chronic kidney disease, or CKD, someone is
One unit of GFR is equal to 1 mL/min/1.73 m2.
When doctors talk about “disease stages” in ADPKD, they are using these CKD stages.
Risk of rapid progression
With rapidly progressing ADPKD, kidney function gets worse and cysts grow more quickly, leading to early kidney failure. Large kidneys can lead to early high blood pressure, more pain, early kidney damage, and early kidney failure.
Kidney size is a sign of risk for rapidly progressing ADPKD
- Kidneys can grow without signs or symptoms. Knowing your kidney size can predict future kidney function decline and help you and your doctor determine an action plan. Doctors can measure your kidney volume based on imaging or scans and will adjust based on your height. Then, they will see if they are big for your age. Your combined kidney volume, or total kidney volume (TKV), could help your doctor predict how fast your kidney function may decline
- For instance, 2 people might have the same size kidneys, but if one person is shorter than the other, that person would be at greater risk. Or, if 2 people of the same height have the same size kidneys, the younger person may have a higher risk of developing rapidly progressing ADPKD
Each patient below has a TKV of 800 mL. Each of their kidneys is about 400 mL, which is slightly more than 13 fluid oz.
Signs of progression
You may be at greater risk for rapidly progressing ADPKD if you:
- Have high blood pressure before age 35
- Have blood in the urine before age 35
- Have a family history of people younger than 58 developing kidney failure
- Experienced a fast drop
- Are male
- Have certain types of inherited genetic mutations
Know your risk factors
It's important to know the symptoms and risk factors associated with ADPKD, so you can talk to your doctor about being monitored and screened.
Progression and imaging
Work with a doctor to learn more about how your kidneys look and how rapidly your disease is progressing
This could include your doctor using magnetic resonance imaging (MRI) or computed tomography (CT) to get a more detailed picture of your kidneys. The earlier you know if you have ADPKD, the sooner you can talk to your doctor about how to manage your disease.