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Telling My Daughters about PKD

“Let’s just handle what we can right now, and we want to take care of our kids and be smart: being healthy, eating the right food and being active and good things like that, but big decisions as far as what are we going to do about PKD and decisions like that we can address as our kids get older.”

John Ventresca

Transcript

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

I would say my family is really the center of my life. We just do a ton together.  Our kids play sports.  We try to keep active with travel and going out and getting ice cream.  There’s no such thing as too much ice cream. We watch scary movies together.  We have a lot of fun together.  It’s a fun age with our kids right now.

I have three daughters.  They know that I have PKD.  I’ve told them about it.  I’ve tried to keep my explanation about PKD at kind of a high level that they can kind of grasp just talking about the kidneys, what do the kidneys do?  They filter. You have two of them.  I have this thing called PKD.  It’s in our family.  Kind of just generally what does PKD do to your kidneys? It kind of messes up your kidneys and over time PKD can steadily affect your kidneys more and more and mess up sort of how your kidneys are working or not working over time.  That’s how I’ve explained it to my kids, just not getting into too much scientific specifics of it, so they kind of get PKD, that it’s something that I have and other people in my family have. I’ve talked a little bit about that PKD is a hereditary thing.  I haven’t talked too much about the future of PKD for us or any of us too much. My wife and I, we’ve talked about this and we don’t need to get into too much future planning with PKD really.

We’re healthy now.  Things are going well now.  Let’s kinda take things as they come a little bit.  We’re busy with life and school and everything that’s going on.  Let’s just handle what we can right now, and we want to take care of our kids and be smart: being healthy, eating the right food and being active and good things like that, but big decisions as far as what are we going to do about PKD we can address as our kids get older.

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