I was diagnosed with PKD 15 years ago and have been 2 different nephrologist’s in that time, one who diagnosed me, when he was struck off! After about a year the other one took over.
A year ago I moved from Essex to Suffolk (UK) at my new Hospital on my second appointment with new nephrologist he said the words and I quote,
“Who told you, you have PKD because you do not !!!!!!!!!!!!
This happened about 2 weeks ago and it’s doing my head in.
I of coarse asked him what I did have, he said he had no idea and sent me off for more bloods and he would see me in 10 weeks!!
To clear things up I do have CKD my GFR is 22 and drops about 2 points a year.
My kidneys are 9.3cm and 9.8cm and both have countable cysts, both kidneys have many 10s of uric stones.
So quite apart from the worry and guilt of passing PKD on to my kids, 2 of whom have been tested my youngest is due for testing this year, also my younger brother having to pay more for his life Insurance because there was PKD in the family.
I am indeed left feeling very angry how could these nephrologist’s get something this basic this wrong for 15 years