Left kidney doubled in size in 3 years??
Hi ADPKD community! Long time lurker, first time poster. I’m 26f with ADPKD diagnosed when I was 21yo. I did some MRI imaging over the years, but this last one I did is honestly freaking me out. I’m super depressed, unsettled, and am crying all the time. I want to post to see if anyone has experienced anything similar.
At Age 23, I was classified as borderline 1B/1C, and my neph put me as 1C because he really wanted to start me on Tolvaptan given that I’m young and could tremendously benefit from it. My current dose is 30/15 and I’ve been on this dose for 2 years.
Here are my TKV data points from MRIs 3 years apart -
Age 23: right 296, left 216 (TKV directly provided by Northwestern Medicine Radiology, not sure if they used segmented method or LxWxD to calculate)
Age 26: right 352, left 411 (My neph calculated it himself using LxWxD)
So my left kidney grew 90% in size, and total TKV grew 50% over 3 years…. Is that even possible? Most researches I read said annual growth for PKD should be around 5%, let alone that I’m on Tolvaptan….
My eGFR is still perfect >120, and my neph was also extremely confused by the results that he said it’s very very odd. He said that if someone’s kidneys really grew that fast, he’d expect BP issues and kidney function decrease, which I don’t have.
For context, I did this last MRI at a small outpatient imaging center to save on the big bucks, so maybe the radiologists aren’t as informed on PKD measurements. My neph asked me to send over the MRI images and he said he’ll ask their own radiologists at Northwestern Medicine to re-read them.
I’m sorry for the lengthy post, but as I wait for the process to go through, I am eager to see if there’s more information I could gather about this to be less worried.