View all stories

PKD Manifests in Different Ways



It’s been wild with the disease, the range of how it’s affected our family. We can go back as far as your grandfather.


My grandfather died at age 60, my grandmother died at 100, so he had it. My mom was one of nine children, and the youngest had polycys [sic] - we knew he had kidney disease, and my mom was sick a lot, so I knew she was sick a lot. And then when my uncle passed, he died in 1970, he died from polycystic kidney disease. And then my mom, forty years later, was sick and needed dialysis, and it was around, other than that she would have died, and so, it made us wonder how many other ones of all those aunts and uncles that I went to the funerals of through the years as I was growing up, had polycystic kidney disease and died young, because my mom died at age 53, and she was the oldest out of all those nine children.

I knew I had polycystic kidney disease since I was 22, and I envisioned being on dialysis at 45.


And I think it’s really amazing that you sit here today at 65 as healthy as you are.


When I found out that Valen had PKD, I was devastated for Valen to be so ill, so young from the disease. I was hoping for the normal course of her being in her mid-40s and hopefully there would be advances, and so that’s – that’s what I thought.


And as of right now, in our immediate family, my wife has PKD, our son has PKD, and he just recently received a living kidney transplant. Valen, obviously, has been through everything with PKD and also has a living donor kidney transplant. We have four grandchildren, and we are at this point aware that our oldest grandson, who is 20 years old, he has – he has been diagnosed with PKD.


I think the varying of how the disease has impacted our family is pretty wild, for we know of people that – we know of family members that have passed shortly after birth, and then we have my mom at 65 doing so well, and then you have a really devastating impact in my journey, and it basically has barely skipped a generation, or you know, we go back as far as five generations and it hasn’t – in every family somebody has had it, so there’s a 50% chance you could pass it on, and it’s wild to see the devastating impact it’s had on our family. And PKD, being a family disease, has so many facets to that of going through a disease yourself and then watching other family members.


Everyone’s different, that’s every PKD person is different. Hang in there. It’s tough, but it’s also – could be very rewarding at the other end of it if you keep a positive outlook. Some of the things that I appreciate the most looking back at Valen’s journey, are the amazing times of incredible closeness, of a bond that is unbelievable. I wish that for any parent to have that close of a bond with her child.


I think that’s what health challenges can gift you with. We’ve endured things that we wouldn’t wish on any other family, but because we’ve endured them together and gotten through them, I think it’s gifted us with a very unique bond between all of us.

Comments (0)
Add new comment
Your screen name will be shown with your comment.
Your email address will not be displayed publicly and will not be shared with anyone.

Plain text

  • No HTML tags allowed.
  • Lines and paragraphs break automatically.
  • Web page addresses and email addresses turn into links automatically.

Thank you for sharing! Your comment has been received.

Your comment has been submitted, and may be subject to moderation.

Submit another comment
View all stories