Does ADPKD always lead to ESRD (Kidne... - PKD Charity for A...

PKD Charity for Autosomal Dominant PKD

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Does ADPKD always lead to ESRD (Kidney failure)?


I was told that half of all PKD patients will have kidney failure by 50 years of age with few having it at 74 years of age depending of the PKD1 or PKD2 gene. But does pkd always end up with kidney failure.

11 Replies

Kidney failure is anything under 60 gfr. I was 48 7 years ago when diagnosee. Its been over 60 for several years now. The term kidney failure is deceiving as there are different stages of kidney failure and you can be in any of them for years.

cdrogers5 in reply to cdrogers5

I am also 53 years old and working 40 hours plus a week. Drink plenty of water. Its key to keep hydrated.

Kenchappa in reply to cdrogers5

Hello, any idea how is gfr calculated.

cdrogers5 in reply to Kenchappa

It has to dobwith the BUN level and creatine. I would google it.

In short - no, it's perfectly possible to die of other causes before kidney failure develops. Not sure if that's what you wanted to know, Kenchappa? Kidney failure is classed as an eGFR of less than 15, anything above will still have quite a bit of function. There are different ways of measuring eGFR, the standard method in UK is MDRD. The Wikipedia explanations are quite good:

Kenchappa in reply to atropa

Hello, the thought of going through dialysis is what is the concern, as I have seen people in dialysis room, some of whom were very weak and fragile, I am not sure what other medical conditions they had but the sight was terrible, So was bit concerned as my doc said with pkd the chances of ESRD are high

Susan_101Moderator in reply to Kenchappa

fortunately many PKD patients who need dialysis are younger and generally in better health than some other dialysis patients.

atropa in reply to Kenchappa

Most dialysis patients have diabetes, which can lead to kidney disease. I think PKD is the 3. common pathology in dialysis wards, but not sure. Anyway, there are alternatives to haemodialysis, mainly peritoneal dialysis or transplant. Have you seen a nephrologist yet? If so, they should be able to explain the options to you. The kidney charities are also a good source of information.

Kenchappa in reply to atropa

I am seeing the nephrologist and according to him there is always a chance of ESRD with PKD, but by constant monitoring of blood ceratine and BP we can prolong dialysis, again we can only prolong and not avoid dialysis totally.

You can get on the new drug called tolvaptan and my Dr says I won’t have to have a transplant. It halts new cyst growth. Check with your nephrologist!

Hello, Are you already on tolvaptan, if so what is the dosage that you are taking. As per my nephrologist it will prescribed later when it progresses still further.

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