If you’re living with polycystic kidney disease (PKD), you will want to take steps towards maintaining your quality of life – it is possible to continue living a happy, fulfilling life after diagnosis. One of the most common concerns for those living with PKD is chronic pain management; however this can typically be easily managed with occasional pain medication, such as acetaminophen. If you are not experiencing any pain, you may still choose to participate in routine day-to-day activities, such as working, volunteering and sports. Regular exercise can help contribute to a sense of well-being, as well as decrease blood pressure and stress. Over the first few months following your diagnosis, your kidneys may increase in size and weight, which can cause discomfort and might even contribute to chronic pain. Speak with your specialist if you are experiencing discomfort or pain that interferes with your lifestyle and they will work with you to determine the best course of action.

Most people with PKD can continue to lead fulfilling careers after a diagnosis, and the decision to tell your employer about a PKD diagnosis can be a deeply personal one. Some considerations to factor into your decision may be whether you will need special accommodations at your work place, flexibility to make appointments and take time off for procedures, and the degree to which you are impacted on the job. For more information on what your employer can offer you throughout your diagnosis and treatment journey, we encourage you to find out more about the labour regulations in your province, or visit the Government of Canada’s Federal Labour Standards page. 

Men with autosomal dominant polycystic kidney disease (ADPKD) do not typically experience a decrease in fertility although ADPKD can be associated with cysts in the male reproductive tract. Defects in sperm function have also been associated with ADPKD. Men with ADPKD concerned about fertility issues should consult a urologist.

When beginning a family, it’s important for both parents to understand that there’s a 50 percent chance that the baby will inherit PKD. It is possible to determine whether the fetus has PKD. Potential parents should also consider the following: 

• Roughly 16 percent of people develop new onset hypertension during pregnancy
• 8 percent develop pre-eclampsia (increased blood pressure and protein in urine)
• Women with PKD are more likely to develop chronic hypertension that lasts beyond pregnancy and women with hypertension are at an increased risk for fetal and maternal complications
• There’s an increased risk of pre-eclampsia
• Four or more pregnancies may lead to a slightly lower GFR
• Pregnancy may be correlated with liver cysts

 Speak to your doctor to learn more about your risks and how to manage them.

PKD is not contagious. It is a genetic disease, which means you have it in your chromosomes.

Access to a Canadian genetic test site can be found at the DNA Testing Centres of Canada. Additionally, a list of genetic test sites around the world is available through the National Center for Biotechnology Information.