Rare, ‘1 in 2 Million’ Goodpasture Syndrome Hits Teenage Girl; Life Saved by Mom Giving Kidney to Daughter

For Release: May 01, 2013

Palo Alto, Calif. - Lori Vargas, mom of 15-year-old Taylor Simpson, said that donating a life-saving kidney to her daughter wasn’t that big of a deal, even though it was.

“There’s nothing you wouldn’t do for your child to make them healthy,” Lori said. She never had any doubts, even committing herself to lose almost 40 pounds -- climbing stairs “like a madwoman” so that she would be fit enough to give a kidney to her only child. It was an impressive commitment, and it led to mom having one of her kidneys removed April 2 at Stanford Hospital & Clinics by surgeon Waldo Concepcion, MD, who then dashed down to Lucile Packard Children’s Hospital, home to America’s #1 pediatric kidney transplant program. There, this icon of kidney transplant -- who once led five transplants in two days -- successfully implanted Lori’s kidney into a waiting Taylor. 

It was a new beginning for Taylor, and a happy end to a dramatic story. A month before her 14th birthday in November 2011, Taylor was enjoying a normal teenage life in Watsonville, Calif., when she was hit with sudden, flu-like symptoms that turned into vomiting blood. She was rushed to a local hospital and then taken by ambulance to Packard Children’s, where blood tests and CT scans showed Taylor had end-stage kidney failure along with bleeding in her lungs. 

She was diagnosed with Goodpasture syndrome. “It’s an extremely rare and life-threatening autoimmune disease, and it happens to previously healthy people without warning,” said nephrologist Paul Grimm, MD, Medical Director of the kidney transplant program at Packard Children’s. “Her body was attacking the filters of her kidney and also the blood vessels of her lungs.” The rare disease was discovered by pathologist Ernest Goodpasture while conducting a study of the flu pandemic in 1919. 

It was the beginning of a long and exhausting medical journey. Lori and Taylor soon were on a two-hour drive to Packard Children’s four times a week for kidney dialysis, and there were multiple rounds of immunosuppressant medications and plasmapheresis, a process to purify the blood. All to fight the disease raging through her body.

However, it eventually became clear that the damage to Taylor’s kidneys was too severe to avoid a transplant. Mom was ready. “From the get-go, I planned on being Taylor’s donor,” Lori said. To receive mom’s kidney, doctors had to be certain that Taylor’s immune system stopped producing the deadly Goodpasture antibodies -- so there would be no danger of her body attacking the new organ. Plus, she needed to be steroid-free for six months, thus pushing the wait into 2013.

Despite all of her treatments and waiting, Taylor never stopped cracking jokes with Packard Children’s staff and devoting herself to her artwork and homework. She became great buddies with her rheumatologist Nina Washington, MD, and nephrologist Orly Haskin, MD, while keeping up with school via dialysis unit teacher Katie Fennimore and a “Taylor”-made Individualized Education Program. “The care teams at Packard Children’s treated me like a normal person instead of a sick kid,” she said. In the meantime, Lori lost the weight and got the “thumbs up” on February 6 to be a donor. Taylor crossed the finish line of being steroid- and antibody-free this spring, thus being healthy enough for the April transplant. A big bonus: After plasmapheresis and a strict medication regimen designed to get rid of the antibodies in her blood, Taylor’s lungs have fully recovered. 

“I think my mom is beyond awesome,” Taylor said of her mother’s decision to donate. Now, as Taylor continues to recover from her April transplant and readies to go home, she’s focusing on the dreams that mom’s kidney has made possible. She’s got a very busy career ahead -- including becoming a bilingual animal rights activist, a yoga teacher and a cop -- but first, she wants to line up some food she has been missing, including potatoes, milk and tomatoes. Taylor couldn’t eat the yummy but potassium-rich foods prior to her transplant -- as patients with kidney disease have a hard time excreting potassium in their urine, causing a buildup that could result in cardiac failure, Haskin said. 

With potatoes and a glass of milk in hand, the high school freshman has a simple summer plan: “I’m looking forward to going to the beach and finally being able to swim,” Taylor said, who has been unable hit the waves due to a hemodialysis catheter in her chest that is now gone. “I can’t wait for my freedom,” said Taylor, who should be returning home to Watsonville in May. It’s a freedom she’ll never forget, thanks to advanced medical care, organ donation, and a very loving mom who would do the same thing again and again and again -- and not just for her only child. 

“If I had more than one kidney I could donate,” said Lori, “I’d keep donating to other patients at Packard Children’s. Taylor and I really know what these kids on dialysis go through while waiting for a new kidney, and I’d like to provide this gift of life to every one of them.”

Authors

Winter Johnson 
(650) 498-7056
wijohnson@stanfordchildrens.org