Time crunch.

After the initial overreaction was over, I was able to find out more accurate information. The number of cysts in my kidneys makes an incontrovertible diagnosis of PKD1; the abundantly more common and more severe form of the disease. I learned that cysts grow about 5% (less than 1% more in some cases, and less than 1% less in others) consistently per year, no matter what form you have. To get a diagnosis of PKD at age 15 - 29, you only need two kidney cysts. Period. I've also found out a lot about transplants, dialysis, and pregnancy.

Should women with PKD get pregnant?

Most of the women with PKD (80 percent) have successful and uneventful pregnancies. However, some women with PKD have an increased risk for serious complications for themselves and their babies. This includes women with PKD who also have:

• high blood pressure
• decreased kidney function

Women who have PKD with high blood pressure develop pre-eclampsia (or toxemia) in 40 percent of pregnancies. This is a life-threatening disorder for both the mother and baby, and it can develop suddenly and without warning. Therefore, all women with PKD, particularly those who also have high blood pressure, should be followed closely during their pregnancy by their doctor.

The horror stories of yore are still accurate and just as valid as they were before, but it seemed like a death sentence to be pregnant. Still, I'm not going to try getting pregnant if and when I get high blood pressure, which "develops in most patients by age 20 or 30". I'm surprised I don't have it yet, with my french fry addiction, but that's the point of this post: everything has a time limit now.

Barring the progressiveness and scariness, I'd say it's the second most life-altering thing about this disease. Everything has a timer on it now, and everyone's is different. Some people still manage to work into their 50's. Others retire in their early 30's. Heck, a number of us die in our early 30's. The pain keeps some of us 20-somethings from completing school. Not me, but a girl who had four cysts in each kidney. Just 8 cysts total were causing her enough pain to leave college. Another girl I met in a support group was unemployed, unmarried, and unhappy at my age. My pain is aggravating sometimes, but I can get a few more good years out of it.

Then there's babies. Not gonna happen after I get high blood pressure. It's risk enough with my blood clotting disorder (made even worse by increase blood clotting in PKD). And that's that.

After I turn 30, the clock begins to tick. This is the age many people get diagnosed because all the symptoms appear and slowly worsen. 40 is where all hell breaks loose, and function declines rapidly. You'll die, transplant, or need dialysis in your 50's. Or, if you have PKD2 or are a lucky PKD1er, then you have another 10 years. The 30% of you who manage beyond that, congratulations! You'll probably be fine.

It's just a bit irritating to think: "Hm...I could be dead in 10 years, or I could be dead in 30." You can't make plans with that!!!