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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Kidneys & Bladder
/ Polycystic Kidney Disease (PKD) Support Group

after diagnosis will the pain begin?

deleted_user
deleted_user
does anyone who was diagnosed at an early age, how long before you start having major pain and problems? our daughter was diagnosed 6 months ago with innumerable, bilateral cysts. she had a couple of cysts causing severe swelling, blood in urine, which led to the ct scan and the diagnosis. ever since then her pain is minimal and sporatic. she knows what excersises to stay away from to keep that from happening again. but how long is it before she has all of this pain and suffering that you all seem to have? her dr says she was born with it, but she never had any childhood symptoms of any kind until 6 months ago. does that mean that this will progress more rapidly now that shes had her first bout with a couple of cysts?
deleted_user
deleted_user
From what I understand ,no one can tell you that ! it seems to effect every one different .I have spoken to one person who is at end stage and has never had a lot of pain and then me who is very early and has had medium pain and of cause there are people here with very large kidneys with a lot of pain .So it seems imposable to guess at what she will suffer .As for how fast she will progress ,well once again that is very individual ,some people progress very fast and others dont ,I think the younger you are the more chance you have of reaching end stage but that is just common sense as you are going to live longer with it than an older person. Sorry but it seems you are just going to have to wait and see .Her next scan will give you a clue ,if she has progressed much in a year or two that may indicate she will progress more ,if she hasnt then that would be a good sign.
deleted_user
deleted_user
ADPKD is genetic, but mutation is a posibility. Normally it is also called adult-onset PKD because that is when it starts (30's-40's). We know there are people who started in their teens. Why? I beleive that Type I PKD, being more severe, is the teenage type. Type II PKD is what most of us have.

I'm pretty lucky because PKD has been painfree so far. Even the blood in the urine. My stone is an entirely other matter though. What type of pain does she have?

Has she had another CT or ultrasound? You can calculate your own progress that way.
deleted_user
deleted_user
we have been told that she has ADPKD but i'm not sure. which one are you saying you think she has at age 19? type I or type II?
the only pain she has at this time is some flank pain from time to time or if someone or something hits her in the kidney area. her sister acidentally bumped her in that area the other day when they were messing around on the couch. she hollered pretty loud and said it hurt for awhile.
deleted_user
deleted_user
I was diagnosed at 16, way to early. It is supposed to be an "adult PKD" but I had my first rupture at 16. I went to the bathroom and all I saw was blood, at 16. I have had pain, ruptures and problems every since. I am 29 now.
deleted_user
deleted_user
I was diagnosed in 1978,I was 27.I had the transplant in 2001..I never had any pain..I was told I had hundreds of cysts but my kidneys were never that large.During exams my nephrologist had a hard time finding them when he would feel for them.It's true,everyone is different.Some people will have their native kidneys removed before transplant because they cause alot of pain..I still have mine...Polycystic disease is quite slow moving..Mine also was from spontaneous mutation..noone else in my family has this...
deleted_user
deleted_user
I was diagnosed when i was 16. I only had pain from ages 16-23 if I had a rupture. I did not have the everyday pain until I had my son when I was 22. About a year after that was the first time i could feel my kidney by pressing on my stomach on either side. Thats when the everyday pain started. Byt my ruptures start when I was 16, but they only happened a few times a year and not many infections either. My son pushed me over the edge!!
deleted_user
deleted_user
LOL Ashley ,kids do that in so many ways.
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