Living with ADPKD

How will I feel living with PKD?

Most people with ADPKD lead normal and active lives until they have lost around 90% of kidney function. Although the kidneys continue to produce urine, because cysts have damaged the kidneys’ filtering units, the urine passed is largely water and salts. It does not contain the waste products, which should also be removed by the kidneys. An accumulation of waste products leads to a variety of symptoms, affecting a person’s health and well-being. As kidney function deteriorates, your doctor will prescribe medications and perhaps suggest some dietary changes to relieve these symptoms.

How often should I see my nephrologist?

As each person’s needs will vary depending on the degree of kidney dysfunction, you should check with your doctor about frequency of check-ups. Initially an annual check-up with your local doctor to monitor blood pressure is advised even if your kidney function is normal. If you have high blood pressure or abnormal renal function, it is important to see a doctor more frequently.

How can I prolong my kidney health?

Maintaining good overall health through diet, exercise, not smoking and controlling risk factors for cardiovascular disease including hypertension can all help prolong kidney health.

What can I do to slow or stop the progression of PKD?

There are several things you can do to try and reduce the risk of developing impaired kidney function:

    1. Control blood pressure. The current goal blood pressure for people with ADPKD is less than 130/80. It’s important to control blood pressure because high levels may further damage and scar the kidney and is also a risk factor for heart disease and stroke.
    • Control cardiovascular risk factors by maintaining a healthy diet, healthy body weight, exercising regularly and avoiding smoking.


    • Avoiding medications that may injure the kidneys. PKD patients are advised to avoid all Non Steroidal Anti Inflammatory Agents (NSAID’s) except in rare circumstances and under a doctor’s supervision.

What kind of medications should I avoid?

In general, you should avoid any medication that could harm your kidneys or affect your blood pressure. This includes Non-Steroidal Anti-inflammatory Agents.

    • Cold or allergy pills containing Sudafed.


    • Over-the-counter diet pills


    • Herbal supplements. These have not been studied for kidney disease and may be harmful for people with renal dysfunction. You should consult your doctor or nephrologist before taking any over-the-counter medications and supplements to help you assess the risks and benefits.