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“You Are Not Alone” – San Diego Patient Ambassador Visit

Valen Keefer is one of the Chris Klug Foundation’s (CKF) Patient Ambassadors and speaks on behalf of the foundation, polycystic kidney disease (PKD), and organ donation. Valen traveled to San Diego with CKF as part of the organization’s annual Patient Ambassador Tour, presented by Astellas Pharma, to speak with transplant patients, recipients, and others touched by transplant.

When I was a child navigating epilepsy, scoliosis back surgery, and polycystic kidney disease (PKD), I didn’t know anyone else with PKD besides members of my own family. I didn’t know of any support groups to attend, didn’t have any friends who were going through similar situations, nor did I have a role model with PKD who was post-transplant and living a fulfilling life to give me hope that I could too. Thanks to the Chris Klug Foundation (CKF), I was given a platform where I could speak to adults and children both pre- and post-transplant as well as their caregivers and be the role model I wish I had when I was younger. Speaking alongside Chris Klug and my husband, Noah, at Scripps Green Hospital and Rady Children’s Hospital in San Diego was a powerful healing experience for both me and Noah alike.

Being a patient most of my life, I’ve learned that it takes a team and, sometimes, a village to get through this journey. The patient-caregiver bond is priceless. I have witnessed, from my parents to my husband, how much of a toll the caregiver role can take on someone, as well as how valuable caregivers are in a patient’s life. It is a role that’s often underestimated and simply not talked about enough. For these reasons, I really appreciate that CKF invited both Noah and me to be speakers on their Patient Ambassador panels in San Diego. This was the first time Noah and I shared the stage and told our story together and the response we received was overwhelming. It’s important to discuss both perspectives—patient and caregiver—and it was wonderful for us to do together.

I am continually in awe of the benefits that come with sharing our journeys, to connect with others so that we know we are not alone. My advocacy efforts have had such a boomerang effect in my life. While audiences tell me how inspired they are after hearing what I’ve overcome, it is always a therapeutic experience for me as well. Sharing our story just one year post-liver transplant and seventeen years post-kidney transplant was surreal. The emotions are still quite raw. Physically, I’m healing really well, but we are still healing mentally and emotionally. I did not know what post-transplant life would look like and I honestly didn’t imagine it would be so extraordinary. I feel very lucky to have the opportunity to share mine and Noah’s journey with Chris Klug at two transplant support groups at Scripps Green Hospital and Rady Children’s Hospital. We were so touched by the responses we received and the incredible humans we met while we were there.

After speaking at Scripps, so many people came up to Noah and me to tell us how much they appreciated, connected with and were inspired by our story. Husbands thanked me for the inspiration I provided to their wives. A woman told me that I was “just the hope she needed that day.” We also met a man who has lived with kidney disease for the past 35 years. His mother donated her kidney to him 35 years ago and she is still alive today in her 90s. He and I had an instant connection and shared commonalities of our journeys together. We soon found ourselves in tears, giving each other a big hug that only two kidney transplant recipients could share. All of us stayed awhile after the panel discussion to talk with attendees and I left the event in tears over my boundless gratitude for this beautiful life.

The next day, we spoke on a panel at Rady Children’s Hospital. I don’t think I realized the impact this event would have on me until I began speaking. Looking out into the audience, I saw middle school- and high school-aged kids who were pre- and post-transplant—this really hit home for me. I could see myself at that age: what I was going through then and how alone I felt. While I shared stories from my youth on stage, I saw parents tap their children’s shoulders and their children nodding their heads in familiarity. I quickly became overwhelmed by the visual feedback: I began to cry while I was talking and so did they. When I think back to myself at their age, I was the girl who had seizures during class, who had to carry a pillow from class to class after scoliosis back surgery, who was dealing with the symptoms of her recently diagnosed PKD. I was the kid who had to sit on the sidelines in gym class, the kid who lost countless friends because of her health issues, the kid who stood out when all she wanted was to blend in. If someone would have told me at that age to keep fighting, to trust the journey and know that, when I’m older, I’ll be using all of these experiences to help others, I would have found it hard to believe. That evening at Rady Children’s Hospital helped heal that little girl in me and I am forever grateful.

Following the panel, Noah and I had amazing conversations with almost everyone who attended. We met an inspiring young girl who was eight months post-kidney transplant, who I wish I could have been friends with when I was younger. I met an energetic teenage boy with epilepsy (like me), who had received a heart transplant as a child. We also met a young girl who had just started dialysis three weeks prior and who became emotional when I began talking with her. All I could do was give her a big hug and try my best to comfort her. Meeting these incredible kids and their parents at Rady Children’s Hospital will forever hold a special place in my heart. I hope I reassured them that they can and will live joyful, productive, and fulfilling lives.

Looking back, I am so proud of Noah for being strong enough to speak from his perspective, the caregiver’s perspective. His patience, kindness, dedication, selflessness, and unconditional love makes him the extraordinary caregiver he is. Seeing him share the challenges and rewards of being my husband and my caregiver was emotional. It’s not easy to see your husband cry when sharing how his wife’s health journey has impacted his life. I’m so thankful for his love and deeply admire his passion to help others.  The response we received from him sharing our story really shows how important it is to highlight his perspective of the journey and support other caregivers to let them know they are not alone. Noah perfectly summed up our experience as a whole at these two events when he said, “Meeting and connecting with other patients is the greatest joy we can take away from speaking on behalf of transplant recipients and caregivers. It fuels us, educates us, humbles us and makes us better at representing our communities.”

Thank you, Chris and everyone at the CKF, for giving us this amazing opportunity and thank you to everyone at Scripps Green Hospital and Rady Children’s Hospital who have touched our hearts forever.

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