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.

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.

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.

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.

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...

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!!

LOL Ashley ,kids do that in so many ways.