Re: PKD possible diagnosis
I was diagnosed at age 28, with PKD. I was the first in our family to be diagnosed. My mother had it, and had a 50% chance of passing it on to any child she had. Of the four children, three of us got it. When I was diagnosed, my doctor said "25-30 years down the road, you may need a dialysis and/or a kidney transplant." I am still not yet on dialysis. Right now, my kidney function is down to 11%.
Both of my brothers were on dialysis for about ten years each before they died. However, keep in mind that they did not like going to doctors, and only went and got diagnosed after they encountered problems. One of the most important things is that high blood pressure goes along with this disease, and you MUST take your medicine as prescribed. You cannot cure this, but you can definitely help yourself along the way. Taking proper care of yourself is very important! When you get an infection, you want to get it treated right away. Take your medicines properly and get your checkups.
I have been on the UNOS listing, waiting for a kidney, for just over two years. I was told that when you get around 25%, you want to talk with your doctor about getting on the list. It might take five years before you actually get a kidney. When you get down around/under 10%, you may need to start dialysis. The timing of that really depends on your health.
Another very important part of this is to get a doctor that you can communicate with. For many years, I had a nephrologist who would say "You're doing fine" every time I went in. One day, my daughter (age 45, who also has PKD) found a website that had a calculator that told what your kidney function is. You just need to enter numbers from your labwork. My doctor had never told me that kidney function had gone from the 80 percentile down to 25%! I now have a different nephrologist, and EVERY time I go in, I ask questions! and a nephrologist can also give you brochures to read.
Although this is not a fun thing to have, there are many problems out there that are much worse. Although it is scarey when you are first diagnosed, I would think you have many years before you need to worry much about it. You asked about testing your children. I had mine tested, and when they were young, it did not show up. I now know that one has it and the other does not. Unless they begin showing signs and having problems, I would wait to test them.