Polycystic Kidney Disease - any experiences?

[Kiltie]

Longish story but scan in 2011 showed some cysts on my kidneys and we're only just starting to properly investigate now.

I'm having blood tests and being referred to renal people at the hospital. GP says they'll likely scan again and possibly want to do a biopsy.

This isn't a big source of concern to me (it's eclipsed by other worries) but I'm wondering if anyone else has been down a similar road and can tell me if there are any specific questions I should be asking.

Thanks.

[adminH]

Kiltie said:

Longish story but scan in 2011 showed some cysts on my kidneys and we're only just starting to properly investigate now.

I'm having blood tests and being referred to renal people at the hospital. GP says they'll likely scan again and possibly want to do a biopsy.

This isn't a big source of concern to me (it's eclipsed by other worries) but I'm wondering if anyone else has been down a similar road and can tell me if there are any specific questions I should be asking.

Thanks.

I was diagnosed with this about 11 years ago. All started with very high BP (210/100) and the tests started from there - urine, blood, MRI. I never had a biopsy but one test involved injecting me with a radioactive liquid and then lying on a x-ray type of bed for 20 mins or so whilst a picture built up on a screen of my kidneys. The left one is pretty small with lots of cysts and the right one is larger as it's also doing some of the job of the other one. Left one is currently 65-70% effective. I'm checked yearly at my Lupus appointment (can be connected but not in my case apparently).

I'm on BP meds to keep it level but not on anything specific for the polycystic kidney. Maybe I'm fortunate but I haven't really had any problems with it. I can't remember what questions I asked at the time but I know that they said they wouldn't take out my left kidney as it still works fairly well.

Hope this may be of use?

H

[Kiltie]

adminH said:

Hope this may be of use?

H

It certainly is, thanks.

Good to know that it sounds like it may be something which can be monitored and managed.

I think I'll dig out my BP machine this evening ... or perhaps I shouldn't.

Enjoy your weekend.

[bomb]

I inherited polycystic kidneys from my mothers side, and have just come out of hospital TODAY, following a kidney transplant (from my wife).

I have been monitoring my kidney function for 20 yeras, and its a slow decline. I have NOT been on dyalisis at all.

If you wish to discuss further, we can do so off line, privately.

[Kiltie]

Had another ultrasound this morning.

Kidneys are now a size / condition to warrant further investigation (MRI) and the consultant has also talked about a drug.

Everything seems to be working ok but I'm pretty fed up. I believed this would never come to anything.

[TROOPER88]

bomb said:

I inherited polycystic kidneys from my mothers side, and have just come out of hospital TODAY, following a kidney transplant (from my wife).

I have been monitoring my kidney function for 20 yeras, and its a slow decline. I have NOT been on dyalisis at all.

If you wish to discuss further, we can do so off line, privately.

How’s your health now mate?

Hope all is well with you and your wife?

What hospital carried out the transplant?