Hello,

It sounds to me like to have PKD2 - a more indolent form of the disease or else an atypical form which can affect one kidney more than the other. It is very reassuring that your eGFR is essentially normal in your late 50s. In cases of PKD where single large cysts enlarge the overall length of the kidney - as opposed to many cysts increasing the size of the kidney - then the relationship of the kidney size to outcomes is far less clear. I would need to see the imaging report to know. Do you have family members who developed kidney failure related to PKD, if so, at what age?

Dr. Jordan Weinstein

Hi, Jordan

Thanks very much for your informative response. I was told that since there were two members in my family with PKD1 that I could only have that. My father and brother both developed renal failure at 57 and were diagnosed with PKD1. My grandfather may have had PKD but there are no records of his condition when he passed at 86. My Aunt told me that he was went to the hospital and was told that he would require ongoing treatment but didn't say why, he left the hospital and died in his home where he lived alone, She said it was possible but wasn't sure and at that point they didn't care to look into it. The results of my first scan 4 years ago revealed what they called normal sized kidneys with cysts, the largest cysts are about 4-5 cm. My nephrologist thinks that I haven't been drinking enough water and that may explain the sudden growth, I don't experience thirst on Tolvaptan so I don't always think about water intake but I now ensure that I take in at least 6-8 litres per day. Since I began Tolvaptan my gfr has actually improved. I have the written assessment of the scans if that would help

Cheers

Scott