Symptoms of Polycystic Kidney Disease

Polycystic kidney disease (PKD) causes fluid-filled growths, called cysts, to form in the kidneys. These cysts disrupt kidney function and can lead to kidney failure. Over time, the cysts overtake parts of the kidney, which decreases the kidney’s ability to function. 

It is estimated that PKD affects 500,000 people in the United States, accounting for about 5% of all causes of kidney failure. 

Frequent Symptoms 

People affected by the most common form of PKD, autosomal dominant polycystic kidney disease, experience the following symptoms:

• Headaches 
• Hematuria, or blood in the urine 
• High blood pressure (hypertension)
• Pain in the back or sides 
• Frequent urinary tract infections 
• Unexplained abdominal swelling 

It is estimated that about half of all people with autosomal dominant polycystic kidney disease are unaware they have PKD.   

Rare Symptoms 

Autosomal recessive PKD is a rare type of polycystic kidney disease that mainly affects infants and the unborn. The symptoms of this disease include:

• Enlarged kidneys due to cyst growth that disrupts the kidneys’ ability to function properly 
• Intrauterine growth failure, meaning small size 
• Low amniotic fluid levels while the infant is still in the uterus

Complications  

For people affected by autosomal dominant polycystic kidney disease, the cysts may interfere with the kidneys’ ability to function and can create complications that include: 

• High blood pressure 
• Kidney failure resulting in dialysis or the need for a kidney transplant 
• Liver and/or pancreatic cysts 
• Urinary tract infections (UTIs)
• Kidney stones
• Heart valve problems
• Intestinal problems, specifically affecting the colon 
• Brain aneurysms (a bulge in a blood vessel in the brain)

Although it can be diagnosed in young people, autosomal dominant PKD is typically diagnosed in adults between the ages of 30 and 50. As autosomal dominant PKD progresses, kidney damage worsens. About 50%–60% of people diagnosed with autosomal dominant PKD will have total kidney failure by age 70 and require dialysis or, potentially, a kidney transplant.

Unfortunately, there is no cure for PKD. Studies are being conducted to determine if there are any treatments that can limit, or even prevent, PKD from progressing to kidney failure. In the meantime, many treatments can be tried to control symptoms, help slow the growth of cysts, and help prevent or slow the loss of kidney function. These include:

• Living a healthy lifestyle regarding not smoking, exercising, getting to and maintaining a healthy weight, and reducing salt intake 
• Drinking lots of plain water throughout the day 
• Avoiding caffeine

Autosomal recessive polycystic kidney disease affects mostly unborn babies and infants. Complications of this type of PKD include:

• High blood pressure 
• Breathing problems due to the lungs not fully developing 
• Kidney failure 
• Liver problems 

Unfortunately, infants affected by autosomal recessive polycystic kidney disease have a poorer prognosis than adults with PKD. About one-third of infants born with this rare form of the disease don’t survive, and infants who do survive have kidney and other health problems that must be managed for the rest of their lives. 

When to See a Doctor  

Since polycystic kidney disease is genetic, knowing your family health history is important. If a close family member is affected by PKD, consider seeking the advice and care of a healthcare professional skilled in kidney diseases, such as a nephrologist, who can ensure proper monitoring and early identification of polycystic kidney disease.   

Eating a healthy diet, getting regular exercise, maintaining a healthy weight, and managing high blood pressure can help people affected by polycystic kidney disease live full lives.

A Word From Verywell

A diagnosis of polycystic kidney disease can be devastating. However, with a knowledgeable healthcare professional, like a nephrologist, working closely with you, your quality of life can be maintained. Taking steps to minimize added strain on the kidneys, such as by managing high blood pressure and eating a healthy diet, can have a positive impact and preserve kidney function for many years to come.