New nephrologist shocker! Thought’s welcome - Kidney Disease

Kidney Disease

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New nephrologist shocker! Thought’s welcome


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

Go well


8 Replies
BassetmommerNKF Ambassador

Wow, Magnetmick,

That really sucks. Do you have any recourse against the original doctor(s)?

I am amazed that your brother has to pay higher insurance because someone in the family has a disease, even if it is genetic. That's outrageous. and I thought our healthcare was bad.

Can you imagine what would happen if everyone who had a family member with heart disease or cancer had to pay more because of a relative? I am sure there would be a revolt here in the USA.

It happens in USA. when we buy life insurance --they do look at - ask for family history and premium may be higher -- we dont know it.

So which one is wrong? I have ADPKD with a GFR of 21 and too many cysts to even see my kidneys. Have you had an ultra sound? What is your body pH? Check the urine stream. You mention a lot of uric acid.

jmkb in reply to Oldearkie_83

I love your pH question, Oldearkie_83! You prompted me to check mine :)

Think about possibly getting a third opinion just to be certain.

I am surprised--in 15 years - why never had second opinion ?

What is PKD ? what test done for diagnosis ? what are normal

Polycystic Kidney Disease and I am Autosomal Dominant. Same tests and ultrasounds for any CKD.

I’d definitely get a third opinion.


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