Polycystic kidney disease?

How serious is pkd?My mum has it and so do i,on both kidneys.My little girl was recently given an ultrasound which also comfirmed that she has one cyst on her left kidney.

The two people you've gotten advice from so far are neither medical professionals nor themselves afflicted with the condition. They have no context for advising you about PKD. I have PKD and can tell you from having to actually live with it that it does not have to be as bad as they're telling you. Go to the pkdcure website (http://www.pkdcure.org/) and check out the page specifically about ADPKD (http://www.pkdcure.org/site/PageServer?p... This is the kind of PKD you have. I know this because your mother has the disease, thus you have the kind passed on via the dominant gene; if you had ARPKD (the more severe kind) your mother would not have had the disease herself.

About half of ADPKD patients do not progress to renal failure, so you are not guaranteed the fate these people are warning you about. Everybody's situation is different. I am 45 and have cysts on both kidneys (a lot more than the 5 cysts that ROS referred to as serious), and I also have cysts on my liver and pancreas. Yet my kidney function is still relatively good, and I'm not on the verge of renal failure. Not saying it won't happen, but I've met people in their upper 50s with ADPKD who still have good kidney function, and have never had to go on dialysis.

I have had symptoms though. I developed kidney stones when I was 40 years old, and when I went to the ER that's where I got diagnosed with PKD. Like you, I wanted to know what my prognosis was, and I also wanted to know what I could do about it and what I should be eating. I had uric acid stones, so I found out I should eat foods low in purines, which are mostly found in animal based foods, so I switched to a mostly vegan diet. I also was prescribed Potassium Citrate by my urologist, which helped lower the Ph of my urine (making it more alkaline), which makes the stones less likely to develop again. Staying hydrated, especially with water, also helps. I also maintain a low sodium diet. I haven't developed any stones in the last 5 years, so all this seems to be working.

By the way, caffeine intake has been associated in studies with cyst growth, so I'd strongly suggest you avoid anything with caffeine in it. Besides the correlation with cyst growth, it can ramp up your blood pressure and put added pressure on your kidneys.

Get a good nephrologist. One thing you'll want to do is find out what your kidney function is. There are a number of ways to test for kidney function. There is a 24-hour "creatinine clearance" test you can take (http://www.nlm.nih.gov/medlineplus/ency/...
and there is also a standard and simple blood test that measures your serum creatinine level (http://rnceus.com/renal/renalcreat.html)... My creatinine levels are still very good.

I'm in a PKD study (http://www.pkd.wustl.edu/pkd-tn/) which is looking at how reducing blood pressure with a combination of ARB and ACE inhibitors might lead to a reduction in cyst progression. I like being in the study because it gives me information on how I'm doing, and I feel that I might be helping in the search for a cure.

Take care, and good luck to you and your mother and daughter.

Hi, I know you must be upset about this. My friend's son had pkd also, and had to have one of his kidneys removed. I don't want to scare you, but remember that we can survive with just the one kidney

Polycystic kidney disease (PKD) is a genetic disorder that results in multiple cysts on the kidneys. Having 5 or more cysts is considered serious, since they tend to replace much of the kidney tissue, reducing kidney function and ultimately lead to kidney failure.
For more information on PKD, visit http://www.comprehensive-kidney-facts.co...

You should check with your doctor regularly to monitor the development of the cysts, and take early action to deal with any emerging problems.

Take care of yourself and your family and may God richly bless you.