Polycystic Kidney Disease (PKD) Support Group

Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.

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Dixie101 03/02/2013

Hi guys,
first to share my good news - I finally got to see a nephrologist a couple of days ago. Had to go private as the NHS completely let me down, but my appointment lasted well over an hour and I came away feeling reassured. I currently have no symptoms, except for headaches, so I am being referred to a neurologist to check those out. Kidneys and liver aren't showing signs of enlargement at the moment. Given I am 60 years old, it seems pretty certain I have pkd2, rather than pkd1.
However - there is always a 'but' isn't there! I have a 1cm stone in the left kidney and a 'very large' cyst at the top of the right kidney, which is causing a filling defect. The left kidney is atrophic, but the renogram shows that it is still working. The neph thinks the large cyst should be left alone, because aspiration can cause infection. Could I have your opinions/experience please? I have read that cysts rupturing can cause huge problems. Also, anyone know anything about stones and whether its a good idea to have them zapped?
Lots of thanks!!

deleted_user 03/02/2013

PKD cysts rupture all the time (not in the same person of course), many with little or no pain, some with bleeding, some not.
a ruptured cyst accompanied by pain and fever needs medical attention, a small amount of blood in urine with no other symptoms needs no more than a call to the doctor. I tend to agree that the large cyst should be left alone.
stones on the other hand can cause excrutiating pain if they move and block something. what did your doctor suggest?

Dixie101 03/02/2013

My worry about the cyst is that it is causing this 'filling defect' though the renogram says there is normal bilateral drainage. The neph didn't seem concerned about the cyst. I have to wait to see the urologist about the stone. It seems nephs do cysts and urologists do stones! Which is fine as long as they transfer decent notes! The stone has probably been there a very long time-possibly years, and it doesn't look as though there is any chance it will move down and exit of its own accord.

deleted_user 03/16/2013

I wish all i had were headaches. =P
On-topic, I would agree the cysts should be left alone. I was told I have a cyst the size of grape on my right kidney. They're going to leave it alone until it ruptures or something. When mine rupture I have Blood in the urine and usually always have to goto the hospital.

Now to the kidney stones. I pass 3 different types of stones so you're lucky that 1cm stone isn't moving much! I just got out of a battle passing a 6 mm stone (doctors gave me nothing to fight through it). I'd say if it's not doing anything ex: Moving/tearing you up. I wouldn't bother with it either. Things to know. When they zap it. You'll be passing all the fragments of that stone. So it's a pretty much Lose/Lose situation.

deleted_user 03/18/2013

Hi...
I have a 11cm cyst on my upper left kidney that causes me great pain and issues with breathing my it presses up into my left lung.
I have had plenty of cysts rupture and it always causes me pain and bleeding. I fear everyday of cysts rupturing because of the high risk of infection. My worst experience to date was a eColi infection beibg released into my system which made me become septic. I can only receive IV antibiotics now because I have become resistant to all oral drugs so the unfortunate side to all of this is if I get any future infections I end up in the hospital. My nephrologist is not wanting to aspirate any of my larger cysts either due to the risks involved but I always try to remain positive.
Best of luck with your treatment path and I am sending hugs your way.

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