Hello, I am a 35 year old female. My mother had polycystic kidney disease requiring dialysis. We do not know which type she had and as far as we knew, no one else in the family had it. However, there was a question of whether it was possible that my grandfather had kidney problems. Anyway, since my mother had PKD, I am nervous that I could potentially have it. I have had a renal ultrasound done at age 31 which revealed no cysts. I was born with pulmonic valve stenosis. I understand that PKD patients could have valvular problems. I guess my question is, should I still be concerned despite the negative renal ultrasound that I could potentially have it or develop problems later in life? Or does the negative ultrasound in my 30s indicate that I likely wouldn’t have it? I am really looking for some peace of mind and maybe some advice in terms of surveillance (of if I even need surveillance). Thanks!

If you do not show any cysts by age 30, it is unlikely that you have Adult Type Polycystic Kidney Disease (ATPCKD).  If you have an ultrasound at age 40, and there is no cysts, then you can be very sure that you do not have the disease.  It is possible to have genetic testing as well, but this is very expensive. I would recommend that you continue to consult with your physician and perhaps have a repeat ultrasound at age 40. As long as you maintain your current health with normal blood pressure and lead a healthy lifestyle, there is no other treatment for ATPCKD.


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