I've just recently been diagnosed with this disease....my doctor didnt tell me much about it, or how long I've had it. He said it prob developed when I was 8 (I am now 20). Does anyone else have this disease also, and can tell me how its effecting their life and if they had to change anything?

People withPKD can live quite normal lives, though their kidney function should be monitored every year. The four most common causes of chronic renal failure leading to needing dialysis are:

chronic hypertensive kidney damage
diabetic nephropathy
glomerulonephropathy
..and polycystic kidney disease.

Now, just because you have PKD, doesn't mean that you're going to have to go on dialysis or need a renal transplant, but you have a greater chance of getting renal failure than someone who doesn't have that problem.

Hi Red, :wave: Butterflytrans is right in that people with PKD can live perfectly normal lives. I was Dxed with PKD about three years ago ,after my son became very ill with a liver disease.Even though this is an autosomal dominant disease,We didn't know that we had this in our family as we had kind of lost contact with my mothers side,and unfortunetly this is the side that carried it.I have been doing fine even though both of my kidneys and my liver are involved.Both of my kidneys are now about twice their normal size and i do have some rather large cysts,with the largest being in my R one and measuring approx 5cm.So far my labs have all been within the normal ranges.I am rather curious as to how your Dr came to the conclusion that you developed this at age 8.I am 42 now and the only changes that i have made are that i eat a little more healthy now compared to what I did before the Dx.And I drink tons of water a day just to keep the kidneys well flushed.I always preferred water over other drinks anyway so that was no big deal.I kind of watch my salt intake more than I used to too.I haven't cut it out of my diet, I just don't add it to everything like I used to.Their isn't any real treatment for this and the cysts just seem to go at their own pace.Another good thing to do is to keep an eye on your blood pressures.I am still amazed that at 42, my BPs are still pretty good.I have been through medical hell with neck and spine surgeries these last two years or so,and amazingly, my BPs are still holding steady.The best advice that I could give you would be to just educate yourself about your disease.Believe me, the internet is just loaded with info.Almost any medical site that you go to will have info about PKD.Just google polycystic kidney disease and you will have more than enough places to start looking.i hope this helps.If you have any other questions for me I would be more than happy to try and give you my best answers,okay? Take care Red, Marcia

I just had a check up with my Doctor, I guess one of my cysts in my left kidney is split, but other than that he says my kidneys are fine...however he did say that i have an overactive value in my heart which is caused by this disease...so i have to go back and get tests on my heart now. But nothing to serious.

He told me that this disease is normally dormant until 30-35. I hope me being diagnosed 10 years earlier doesn't effect the progress of it worsening

but all is well as of now, and it hasnt spread to my liver so thats good