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For Taylor Simpson, it began with flu-like symptoms just before her 14th birthday. Soon she was vomiting blood. After an ambulance ride to Packard Children’s, tests revealed she was at end-stage kidney failure and bleeding in her lungs. A total shock to Taylor and her mom.
The diagnosis was Goodpasture syndrome, an extremely rare autoimmune disease that can strike out of the blue. In Taylor’s case, her own body was attacking her kidneys and lungs. Her lungs might respond to treatment, but she’d need a kidney transplant — and her mom Lori was the first in line to donate.
“From the get-go, I planned on being Taylor’s donor,” said her mom, Lori Vargas. But she would first have to meet the standards required to be a living organ donor. And so she began a diet and exercise regimen, losing nearly 40 pounds in less than a year.
It was a long road for Taylor as well. Dialysis four times a week, immunosuppressant treatments, and plasmapheresis, a process to purify the blood. What’s more, to receive her mother’s kidney, her immune system needed to stop producing the deadly Goodpasture antibodies or it would simply attack the new organ. And she needed to be steroid-free for six months, pushing the wait into 2013.
Through it all, Taylor never lost her cheerful demeanor, befriending her rheumatologist Nina Washington, MD, and nephrologist Orly Haskin, MD. She devoted herself to her studies via dialysis unit teacher Katie Fennimore and an Individualized Education Program, and kept up with her artwork.
“They treated me like a normal person,” she recalls. “Instead of a sick kid.”
That February, mom got the "thumbs up" to be Taylor's donor, and Taylor got her green light soon after. On April 2, surgeon Waldo Concepcion, MD, removed one of Lori’s kidneys at Stanford Hospital & Clinics, then immediately implanted it into Taylor at Packard Children’s.
It was a new beginning for Taylor, now 15, and a happy end to a dramatic story.
A big bonus: After plasmapheresis and a strict medication regimen, Taylor’s lungs have fully recovered.
There’s no doubt that much of Taylor’s positive outcome is owed to the love of her mom. But it was all made possible thanks to a high level of coordinated care that brought all the pieces together.
Taylor, however, sums it up even more simply: “My mom is awesome.”
© Stanford Children's Health