Polycystic Kidney Disease (PKD) Support Group

The only real definate way is through ultra-sound or cat scan blood and urine wont tell if u have PKD it will tell your cratine levels whic tell how much your kidneys actually function Hope this helps

Bubbly/Foamy urine = possible problem.
Blood in urine = definite problem.

There are no early warning signs that I know of to date.

One way to figure if there is somthing wrong is by self diagnostics. We're not machines so we can't say exactly what's wrong. We can however know what's right. We need to be in tune with your body.

The rest here is speculative, but it may be right.

Everyone just starts to grow cysts because of a specific trigger. This trigger has to be common to all the people involved.

I my search through Traditional Chinese Medicine (TCM), they list organs and what they are related to. For instance, heart is listed as circulation, stomach is digestion, etc... Kidney is related to sexual function. Is there a possible link? Who knows?

My earliest sign (at age 16) was severe pain and noticeable blood in my urine about 12 hours after the pain started. But I knew what it was right away because my mom has PKD as well and I had seen her go through ruptures for years.

I heard that lungs are conected to kidneys too ,I had smoke inhalation 2 years ago and was sick for months ,I took a lot of ani-inflematary drugs ,asprin ext for that.I feel that was my triger ,any one else had lung problems?

Ashle ,you knew ,yes but did the doctor diagnois you then or did it take them a while to agree with you ?Do you know how many cysts you had then?

Yes, I had an ultra sound the next day and they diagnosed me right away, there was no question. My kidneys were large then and covered inside and out with cysts.

with my family history of PKD the doctors ordered an ultra sound first thing. Now if there had been no family history it probably would have taken them much longer to figure it out. Adult PKD is not something you look for in a 16 year old. But it was very much there. I could see the cysts on the ultra sound screen, it was so gross. Then when my mom had her kidney removed it was 12 pounds, the doctor took a digital pic of it on the table and we got to see that, ewwww, that was even more gross.

sorry you were so young ashley .and so bad ,it is a horrable thing in one so young ,it is suposed to be an older person thing .Im getting it at the right age most of you here are too young.

Does anyone have allergies?
Right now I'm in hayfever hell and with each sneeze I feel it in my kidneys.
I also have food allergies.
Could any of these be the trigger?

I have some food intolaraces ,the diferance is that I can eat them but if I eat too much I get a reaction .I had a bad case of hives some years back ,like I had them for 6 to 8 months straight.