PKD Connection Blog

Positivity, PKD Connect

Empowering better tomorrows through PKD Connect Peer Mentoring Program

Risa Simon

At the PKD Foundation, we’re proud to offer support through the PKD Connect Peer Mentor Program. This program is designed to help facilitate and build a strong support system for mentees with the help of peer mentors, someone who knows firsthand what patients are going through. We recently reached out to one of our mentors, Risa Simon, to share what inspired her to start providing support for others in the PKD community:

While it didn’t happen all at once, my renal function numbers started to decline as the years went by. Desperate for guidance, I peeked outside the boundaries of my nephrologist’s exam room in search of more answers. I thought, surely, there must be someone who can shine a brighter light on my future with PKD.

That curiosity led me to a PKD conference in 2008. The meeting was riveting, and one topic in particular really fired me up. The program was about the value of securing a transplant before the need for dialysis, and the power of living kidney donation. The more I learned, the more I realized how much I wasn’t told during all those doctor visits leading up to this point.

Risa has written books about finding a living kidney donor

In this new learning space, I uncovered the staggering differences between dialysis and transplantation. I also discovered that preemptive transplantation held significant advantages. For the life of me, I couldn’t understand why I had not been encouraged to seek a transplant before I required dialysis, also known as a “preemptive” transplant. While I had never heard that term before, this new acquaintance became my number one priority.

Of course, my biggest hurdle was to get evaluated and approved for a transplant—and find a living kidney donor before I neared dialysis. I set out to interview and poll as many PKD transplant recipients willing to converse on the topic. One kind recipient graciously recognized my eagerness to learn and agreed to speak with me periodically. The insights she shared fed my spirit beyond expectation. She became my bright and shining “go-to” rainbow. Her calm, empathetic and confident presence fueled my drive to achieve my goals.

Our conversations were so spellbinding that I documented each and every one of them. One day, while reflecting on my journal’s entries, something bigger than myself hit home. I realized I was not alone in this fight for a better tomorrow. I thought, if I couldn’t navigate this path without an empathetic and encouraging ear, how many more PKD patients were out there struggling on their own?

While our healthcare providers will always be front and center to our medical needs, there is no substitute for those who have walked this path before us.

Risa and her living donor

For this very reason, I decided to become a mentor and give back after securing my own preemptive (live-donor) transplant in 2010. My journey’s observations, insights and successes—and all the hiccups in between, are now being used to inspire others.

When mentees share their fears and struggles with me I can swiftly reflect on those realities as if they were my own—because they once were.

My core purpose is to give back all that my mentor graciously gifted me—her ability to inspire, encourage and reframe what we once felt was impossible. My goal is to help PKD patients believe in themselves and the possibility of a better tomorrow.

Thanks to the PKD Foundation’s PKD Connect Peer Mentor Program, I represent one of many mentors who are privileged to serve this wonderful give-back community. Without question, it’s one of the most powerful and meaningful ways that we can make a difference.

Interested in signing up to be a mentor or mentee? Check out how at PKD Connect.

Risa Simon is as a preemptive (live-donor) transplant recipient who is living her best life ever. As the founder of the TransplantFirst Academy and The Proactive Path, Risa is best known for her enthusiastic spirit, motivational programs, and patient self-help books, “Shift Your Fate” and “In Pursuit of a Better Life.”

Comments

  1. Welma says:

    This is news to me as well. I am going to find out more about the possibility for a preemptive transplant possibility in South Africa as well.
    Welma Nortje
    PKD stage 4
    South Africa

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