An Open Letter to PKD

Valen as a child (1)
Dear PKD,

It’s hard to believe it has been 23 years since we met. You arrived in a fierce and unforgettable manner. I went from having no clue who you were to having an alarming blood pressure reading of 160/140 mm Hg as a 10-year-old, and then being diagnosed with you. Wow, you wanted to be heard and you were, loud and clear. From that day forward, you have led me down a very unique path, one I wouldn’t wish on anyone, yet I’m okay with it. What other choice have you given me?

To My Younger Self

Valen as a childI’ve learned a lot from living with PKD since the age of 10. PKD and the health issues I’ve endured have taught me all facets of strength, emotionally and physically. I believe what we go through in our youth has a large impact on our future. We learn and grow from experiences. At times when reflecting back on our childhood, we say, “I wish I would have known then what I know now.”

Looking back on living with health issues as a child, I would have told my younger self:

Build Your Community

Participants of the South Central PA Chapter’s Walk for PKD

I think people would be surprised if they knew how many PKD patients live close to them. I spent a little over a decade after being diagnosed at age ten without ever knowing or crossing paths with anyone outside my family with the disease. The only reason that changed was because I founded the South Central PA Chapter of the PKD Foundation in 2004. By taking this major step, my PKD family grew in spades and in a very positive way.

The Gift of Life: Interview With My Donor

Sally & ValenI love that my living kidney donor, Sally Robertson, has been a part of my life since I was in 8th grade. I will always be in awe and forever grateful for Sally’s selflessness and gift of life. Not everyone knows who his or her donor is, nor communicates with them. I treasure that I not only know my donor, but share an indescribable bond with her. We are able to celebrate milestones together, like our upcoming 14-year transplant anniversary in August. In honor of National Donate Life Month, Sally answered a few questions about being a kidney donor and our organ donation journey.

How I Honor My Donor

Valen-and-Sally-square_FBActions speak louder than words. A mere “thank you” to my living kidney donor, Sally Robertson, seems inadequate as I’ve been afforded the past 13 years and 8 months of living because of her decision to donate life. I choose to thank and honor Sally by the way in which I lead my life:

  • I treat others with kindness and compassion
  • I treasure the simple pleasures in life and strive to make the most of every precious day
  • I take pride in caring for our priceless kidney and my health
  • I handle health challenges with as much strength and grace as possible

Nothing is a Coincidence

pkd-fighter-fistsToday wraps up 31 Days of PKD Challenges. It has been fun to see the heightened PKD awareness being spread on social media the past couple of weeks. We should be proud of the difference we’ve made this month and strive to keep that momentum going. On this last day of National Kidney Month, I’d like to share a moving experience that unfolded during this special month.

Last Thursday evening, I was a judge at the Auburn 49er Lions Club 79th Annual Multiple District Four Lions Student Speakers Program. With my love of public speaking, I was very excited for this opportunity.