COVID-19 being what it is, Valen Keefer’s speech at the grand opening of CareDx’s newly expanded CLIA lab in Brisbane, California was a unique virtual event.
Valen was there as a virtual robot, sharing her inspiring story and leading the countdown for the ribbon cutting.
“Being a transplant recipient is a lifelong journey and having the opportunity to celebrate this new lab is so amazing,” said “Robot” Valen.
Valen’s journey as a multi-organ transplant recipient has been a compelling one—to say the very least.
She has lived through polycystic kidney disease (PKD), dialysis, lengthy hospital stays, a kidney transplant, and a liver transplant. She is a survivor through and through, with a prodigious passion for helping the transplant community.
Valen remembers her PKD diagnosis at the age of 10.
PKD is an inherited disorder where clusters of cysts develop—primarily within your kidneys—causing the kidneys to enlarge and lose function over time.1
Despite being too young to understand the gravity of PKD, she remembers a pediatric nephrologist telling her, “PKD is probably one of the best diseases to have, because it won’t affect you until you are in your 40s or 50s.”
Valen’s PKD journey would end up being the complete opposite.
Valen Keefer’s mom, maternal aunt, and maternal grandmother all had PKD before her. Her aunt and grandmother passed away from it. Her mother—going strong at 64—still has her original kidneys and has never needed dialysis.
So, when—at the age of 10—Valen had a 160/140 blood-pressure reading at a normal pediatric check-up, her mother knew what was happening.
“They immediately ordered an ultrasound and discovered that both of my kidneys were polluted with cysts,” says Valen.
Instead of having to wait till her 40s or 50s to be affected by PKD, she began a downward health spiral that would lead to a kidney and liver transplant in the coming years.
All throughout middle school and high school, Valen was in and out of the hospital.
During her freshman year of college at Millersville University, she checked herself into a hospital and did not leave for another 11 months.
Her bleeding kidneys needed to be removed and she was immediately placed on dialysis.
During Valen’s 11 months in the hospital with no kidneys, several living donors volunteered to give their kidney to her—including high-school friends and people from her dad’s work.
Sally Robertson, however, matched three out of six antigens, which made her a good fit.
Sally was a good friend of Valen’s family, and the mother of Valen’s childhood friend, Emily.
In addition to Emily, Sally had four other kids, a husband, and a career.
“I remember hearing Sally’s voice, and her sharing her excitement about giving me one of her kidneys,” says Valen. “It felt like a huge weight had lifted off of my shoulders”
On Tuesday, August 13, 2002, at the age of 19, Valen Keefer was given one of Sally Robertson’s kidney.
Eighteen years later, Sally’s donated kidney is still doing well inside of Valen.
“It gives me goosebumps to think that Sally’s gift of a kidney has almost doubled my life,” says Valen. “It’s just extraordinary to think that I have been able to grow into the woman I am today because of Sally having the calling and desire to do that.”
Fourteen years after Valen’s kidney transplant and deep into her new life, Valen started to get sporadic bouts of sepsis, and over time these bouts got worse, eventually leading up to the need for daily IV antibiotics.
Valen’s care team eventually found out that her PKD affected the bile ducts in her liver, causing her liver to become infected.
By 2018, Valen’s doctors told her she needed a liver transplant.
Soon after, Valen and her husband, Noah, went to Barnes-Jewish Hospital in St. Louis, where she received a liver transplant from a deceased donor.
Coming out of the liver-transplant surgery, Valen was naturally concerned about how her transplanted kidney—which, at this point she had had for 16 years—was going to respond.
Fortunately, Valen’s transplanted kidney remained stable.
Valen considers it an honor to her living and deceased organ donors to take the best care of herself.
Where she was once taking 40 pills per day, she is now down to 17, and calls taking your meds every day—and on time—one of the most important things that people in the transplant community can do.
After her kidney transplant, Valen got her labs once per week, but now she gets them once per month at a clinic near her home in Northern California. She says that trends are an important thing, and by getting regular labs she can follow trends to see if she is okay—or if there are any issues going on.
She also stays in close contact with her nephrologist, whom she calls a “extraordinary.”
Valen thinks that one of the biggest challenges that transplant recipients face is a “lack of community.” She says there is a limbo some transplant recipients go through of wondering what to do after transplant, after so many years of channeling their energy into managing their sickness.
“How do you now integrate yourself—as a generally healthy person—back into society?” asks Valen. “Into a life with your family and friends, and the transplant community?”
Valen wants recipients to know they are not alone. That there is a community out there for them—the transplant community.
“I hope that my journey and what I have done post-transplant gives that hope to other people,” she says. “That’s ideally why I share my story of the joys and the challenges. Because people in the transplant community connect to that. I have total empathy for what they are going through.”
By the way she chooses to live her life and express her gratitude, Valen hopes that people can see the life-changing power of organ donation.
“I hope that after hearing my story, people think, ‘Wow … I have the potential to do that for someone. I have the potential to give someone a life!”
Valen adds that had Sally Robertson not stepped forward in the summer of 2002, she would not have been gifted the second half of her life—and her passion for life.
“I hope that my story shows the magnitude of the gift that we all have within ourselves to give,” says Valen. “Whether that is signing up to be an organ donor or being a living donor, I want donors to know how lifechanging and lifesaving their gift can be, and I want recipients to know there is such a beautiful life to live post-transplant.”
To learn more about Valen, go to https://valenkeefer.com/
If you are an organ recipient, protecting your own donated organ, download the AlloCare™ app for transplant patients. AlloCare helps transplant patients manage their overall health with medication management, biometric tracking, and the latest resources for the transplant community.
Learn more or download from the Apple App Store; search “AlloCare.”