Autosomal Dominant Polycystic Kidney Disease Symptoms

Autosomal dominant polycystic kidney disease, or ADPKD, is a genetic disorder that affects the way your kidneys function. This condition causes numerous fluid-filled cysts to develop within your kidneys. As they grow in size and number, they can interfere with your kidneys’ ability to filter waste products from your blood, which can lead to serious problems. If you have a parent with ADPKD, you have a 50% chance of inheriting the condition yourself. Though some people experience symptoms during childhood, most cases of ADPKD are diagnosed between ages 30 and 50. Reach out to your doctor if you experience any of the following signs of ADPKD.

Your kidneys play a key role in keeping your blood pressure levels stable, but when ADPKD cysts get larger and more numerous, the kidneys aren’t able to perform this job. That’s why the majority of people with ADPKD will experience high blood pressure. This is often an early sign of ADPKD, even before you have any significant change in your kidney function.

You may notice your urine looks reddish or pinkish due to the presence of blood. This may occur as the result of cysts bursting or from small blood vessels around the cysts. It can last for a short period of time or for several days.

The presence of cysts can affect the flow of your urine, causing infections. Pain with urination, increased frequency of urination, or ability to pass only small amounts of urine may result. If the infection travels up into your kidneys, you may experience kidney pain, fever, and chills.

Up to 25% of people with ADPKD will develop kidney stones. They can be painful and make it difficult to urinate. Small stones may be passed with urine, but large stones require treatment to break them up or remove them. 

Pain is commonly experienced with ADPKD. It may develop due to growing cysts or as the result of urinary tract infections or kidney stones. Some people also report a feeling of heaviness or fullness in their abdomen.

In addition to your kidneys, cysts may grow in other organs, such as your liver, pancreas, and spleen. This causes your kidneys and other organs to increase in size and can make your whole abdomen swell.

Let your doctor know if you experience any symptoms of ADPKD, especially if you have a family history. ADPKD is a chronic disease that tends to get worse with time and can lead to kidney failure. There’s no cure, but treatment can help you feel better and slow down the progression of the disease.

Controlling high blood pressure is extremely important to help preserve your kidneys’ function. Your doctor may prescribe medications, like angiotensin-converting enzyme (ACE) inhibitors, to help lower your blood pressure. Lifestyle modifications, such as changing your diet, increasing your exercise, and quitting smoking, can make a difference as well.

Talk to your doctor if you’re having pain. It can often be managed with over-the-counter pain relievers, such as acetaminophen (Tylenol), but severe cases may require surgical removal of large cysts. A recently approved drug for ADPKD called tolvaptan (Jynarque) can also help decrease pain and slow the decline of your kidneys.

You’ll need antibiotics if you are battling urinary tract or kidney infection, and increasing your fluid intake can help with blood in your urine. If kidney stones become large or interfere with your ability to urinate, your doctor may suggest a procedure using shock waves to break them up so they can be passed through your urine.

About 50% of people with ADPKD will eventually go into kidney failure and require dialysis or a kidney transplant. But according to the PKD Foundation, there’s reason to remain hopeful. More new drugs are being studied for ADPKD than ever before, and we are continuing to learn more about the genes involved in the disease process. The future outcomes for ADPKD may be changing.