What are the symptoms of PKD? — Some people with PKD have no symptoms. When people do have symptoms, they can have:

  • Pain in the lower half of the back or on the side, with or without a fever
  • Pain in the belly
  • Blood in the urine
  • Kidney stones – These are small, stone-like objects that form inside the kidneys. They can cause belly or side pain, or blood in the urine.

PKD can also cause problems in other parts of the body, such as:

  • High blood pressure— High blood pressure is a common feature of PKD, occurring in 60 to 70 percent of patients with normal kidney function by the age of 29. Over 90 percent of patients will have high blood pressure by the time they reach end-stage kidney failure. Men have higher blood pressures than women, and high blood pressure is associated with bigger kidneys and faster rates of kidney growth.
  • A bulging blood vessel in the brain – If the blood vessel bursts, it can cause a sudden, severe headache and nausea and vomiting. A burst blood vessel can lead to brain damage and even death.
  • Cysts in the liver – These can cause belly pain.
  • Cysts in the pancreas.
  • A weak area in the belly muscles (called a “hernia”) – This can cause an area of the belly to bulge out.
  • Urinary tract infections
  • Heart problems – These do not usually cause symptoms.

Diagnosis:

Is there a test for PKD? — Yes. To find out if you have PKD, your doctor can do:

Basic tests:

  • Creatinine and eGFR
  • Protein in the urine
  • Kidney imaging studies remain the mainstay for ADPKD diagnosis. Kidney ultrasound is commonly used for diagnosis. Sonographic diagnosis criteria for ADPKD are based on
    • Age
    • Positive family history
    • Number of cysts

More advanced diagnostic techniques available are:

  • Magnetic resonance (MRI) or contrast-enhanced computed tomography (CT) can detect smaller cysts and therefore can be used in high risk patients with a normal or indeterminate ultrasound scan
  • Genetic testing is done to detect the mutations in the PKD genes. Although expensive, it can be performed when a precise diagnosis is needed and the results of imaging testing are indeterminate. 

How to manage PKD?

  • Find a nephrologist and team who are knowledgeable about ADPKD - A team approach is very important
  • Know your tests and medications
  • Control your blood pressure
  • Drink plenty of fluid (water)
    • Average recommended amount of water is three liter
    • Water acts as a flushing mechanism for bacteria
  • Reduce salt intake
  • Avoid high protein diet
  • Plant based diet; majority of your meals should come from plants
  • Limit caffeine; can affect cyst growth
  • Avoid drugs, medications, and agents that are potentially harmful to your kidneys
    • NSAIDs like motrin
    • PPIs- Proton Pump Inhibitors
    • IV contrast- CT scans, angiograms
    • MRI with IV contrast
    • Be cautious with OTC and herbal products

Disclaimer: The UCLA Health System cannot guarantee the accuracy of such information. The information is provided without warranty or guarantee of any kind. Please speak to your Physician before making any changes.