My name is John.  I’m an Instructional Designer, and I have PKD.

I was about 30 when I found out that I had PKD. I was getting an ultrasound for another kind of medical issue I was dealing with, and then they detected something going on with my kidneys in the ultrasound.  Then I met with my PCP and was told that yes, I did have PKD. I knew about PKD from a couple years earlier finding out about PKD through my mother. 

I was in my late 20s, and she told us that she has to go on dialysis that her kidneys have declined as far as their function. So, this was news to us, and then we learned from her that we had a family history of PKD that she inherited from her mother.

So, I had heard about it before, but now I found to that I had it. It was a big deal.  It was difficult in a few different ways.  I felt perfectly healthy.  Again, I was almost 30, very active, married.  We were living in Boston at the time and just having a really good life with friends and just doing a lot of things.  We had moved into a house recently, and to find this out was frustrating and upsetting to find out that I had this disease, but also confusing, because I felt perfectly healthy otherwise.

Even when you know there are odds of inheriting something to actually know that you’ve got it is depressing.

We were going through a stressful time with a couple other things just around this same time.  I was working as a contractor.  I was looking for a full-time position.  We were hoping to start a family at the time, and then to find this out it was like something was piling on with bad news at that time.  It was springtime, and to get this news on top of these other couple really challenging things was really tough.