Twenty years ago, Valen Keefer was at death’s door.
“At nineteen, my parents were living at the Ronald McDonald House,” she said. “There was a day that my family was called in to say their goodbyes. I was that sick teenager that just wasn’t expected to make it.”
Since she was ten, Keefer suffered from a genetic disorder called polycystic kidney disease. PKD, as it’s known, causes the formation of fluid-filled cysts on the kidneys. The disorder causes the kidneys to enlarge and function poorly. In Keefer’s case, her kidneys got so big that doctors elected to remove them.
That forced Keefer into dialysis — a process by which a machine does the work of human kidneys, by helping remove harmful waste from the blood.
Ultimately, Keefer needed a kidney transplant.
But... join the club. More than 100,000 Americans are waiting for various organ transplants at any given time.
“The average wait is from two to three years for a kidney transplant,” said Chris Lawrence, MD, of Thermo Fisher Scientific, a nephrologist from the United Kingdom. “Being on dialysis or waiting for an organ is hard work and it’s a difficult time for people.”
Fortunately for Keefer, an organ from a live donor became available within months. And — amazingly — she’s been relying on it ever since.
“This August will be 20 years since my kidney transplant,” Keefer said. “My life has been doubled because of organ donation. Because of science and the miracle of modern medicine -- and the miracle of transplantation, I am alive today.”
Lawrence said the average transplanted kidney lasts about 14 years.
That makes Keefer something of a case study.
“The longer we can make the transplants that we do, last, the better it will be and the more people will come off the waiting list. and get a life-changing transplant,” he said.
Keefer and Lawrence are in Boston this week to attend the annual American Transplant Congress. Keefer hopes to encourage more Americans to become organ donors, and to serve as a resource for those facing future transplantation.
“Sometimes, people think — you get a transplant and you’re good now,” she said. “It is a lifelong journey.”
That’s because transplantation requires the lifelong use of anti-rejection drugs — and all that comes with that, including immunosuppression.
“I take around 20 pills a day and that comes with side effects and different challenges I have to navigate,” she said.
Such as the pandemic.
“This is my first trip,” said Keefer, who is from California. “I’ve lived super-secluded. This was a big deal to come here and say yes — knowing I was putting myself at risk.”
Actually, Keefer has two transplanted organs to care for. Four years ago, she received a new liver — also because of the kidney disease.
“It gives me goosebumps when I think of how lucky I am to be alive and receive that gift twice,” she said. “I know that I’m still here for a reason and have a really powerful purpose. And I intend to make the most of the rest of the days that I’m lucky to be here.”
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