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  1. scott
  2. General Nephrology Questions
  3. Friday, 03 May 2019
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I am 57, stage II PKD, my right kidney is 13cm in length but the left is now 16.5 (grown 3 cm in 2 years) prior to that in a 2 year period there was no growth at all, I have read that when kidneys reach 17cm the approx volume is about 700 (they did not measure volume in my scans). While the left kidney grew from the burden of cysts the right did not grow at all, should it be expected that the right kidney will soon grow to match the other or do they just adjust randomly over time depending on the cyst growth. I have also read that once the volume reaches 700 it is expected that stage III will be reached with 8 years, is this true when one kidney reaches that stage or does it apply only when both reach that size. My GFR is in the low 80's and has been stable since my diagnosis 4 years ago. I have been on Jinarc for 3 years.
Responses (2)
Accepted Answer Pending Moderation
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
Accepted Answer Pending Moderation
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
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