I am trying to respond to lizd44 but didn't know how to do it. So my response to the last replly is this: I was diagnosed 6 1/2 years ago and I was functioning at 80%. But went all the way down to 5% this year. So in less than 7 years I went from 80 to 5. That seems incredibly fast to me. I was just wondering if this has happened to any other PKD patients who obtained the disease through spontaneous mutation??
I am Liz_d44 and I am not sure which post you are replying to. We all seem to travel this road at our own rates, some faster and some slower and some at a steady rate and others in fits and starts. I lost function at a pretty regular rate of 4-5% per year and then stalled out at about 20% for quite a while--3 years in fact- sometimes a bit higher and sometimes a bit lower; I bounced around. Not sure how long that will last. I had my AV fistula put in when I went under 25% as they anticipated some problems with maturation. It is very mature now. Only time will tell when it will be needed. So the answer is what ever you have is normal for your I guess and I do not personally believe (not medical opinion) that whether it is spontaneous or inherited makes any difference in rate of kidney loss.
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