By her 23rd birthday, Sandy Schill had learned she had a rare blood disease.
By her 47th birthday, she had undergone two kidney transplants and was told her blood disease — the one she thought she defeated two decades ago — was back.
But today, a new drug has begun to restore Schill’s health and, more importantly, hope.
“There’s nothing worse than getting a new kidney and being told it might not make it and you might not qualify for another because of the blood disease,” she said. “This drug gives me hope.”
Schill was diagnosed with a rare blood disease — thrombotic thrombocytopenic purpura, or TTP — 25 years ago at the age of 22. The disorder causes blood clots to form in small blood vessels around the body and leads to a low platelet count, according to the U.S. National Library of Medicine.
After months of plasmapheresis — or blood plasma exchanges — doctors told the young Schill she was in the clear. For 15 years, Schill was active and healthy.
But the disease had been brutal to her kidneys. Her red blood cell levels started dropping, and in 2003, her kidneys failed. Schill’s sister donated one of her kidneys, and for years, Schill lived problem-free.
But in September 2009, Schill noticed her body was retaining water. Her doctors ran blood tests and checked her kidney function.
“They said to me, ‘You’re in renal failure. Go home. You need a new kidney,’” Schill said.
Schill dropped out of nursing school and went on dialysis. She continued to work as a surgery technologist at PeaceHealth Southwest Medical Center to keep her health insurance.
In August 2010, Schill received her second donated
kidney, this time from her cousin.
Despite the new kidney, Schill’s health wasn’t improving. In fact, it was getting worse. Six weeks after receiving her new kidney, Schill’s doctors gave her chilling news.
“They said, ‘We think your blood disease is back,’” Schill said. “I was shocked.”
Doctors believe the anti-rejection medications Schill took after her kidney transplants triggered the dormant blood disease.
In the two decades since her initial diagnosis, doctors had learned more about TTP and diagnosed Schill with a variant of the blood disease called atypical hemolytic uremic syndrome, or aHUS.
Schill immediately began dialysis and the plasma exchange treatment, which kept her stable but wasn’t stopping the blood disease.
Then, in late 2010, Schill heard about a study on a drug to treat aHUS. She qualified for the study but had to go three months without dialysis before she could begin. In those three months, Schill’s platelet counts improved just enough to bump out of eligibility.
“I felt like I was just a sitting duck,” she said. “I’m just waiting for the blood disease to start back up again.”
But on Sept. 23, the U.S. Food and Drug Administration approved the drug, Soliris, for the treatment of aHUS. It had been approved years earlier for treatment of another blood disease. But, in September, it became the first, and only, drug approved for Schill’s disease.
Within two and a half weeks, Schill had her first dose and is believed to be one of the first people in the country to use the drug for aHUS.
The medication is administered through an IV in about 35 minutes. She received the drug weekly for four weeks and now goes to Legacy Good Samaritan Medical Center in Portland once every two weeks for treatment.
“Now, we’re just watching and waiting for the improvements,” she said.
Schill said she has already noticed her energy level increase. She re-enrolled in nursing school at Lower Columbia College in Longview. She also returned to her job, which she lost due to her illness after the second transplant.
Her friends and family say they can see and hear the improvement when they talk to her. And Schill has begun to get more involved in the Ridgefield community, where her husband, Ron Onslow, serves as mayor.
A year ago, the community rallied around Schill and Onslow and raised money to help keep the family afloat financially for four months.
Now that her health is improving, Schill’s focused on returning the favor through volunteerism and continuing her quest to become a registered nurse.
“I was always sitting around waiting for the ball to drop,” Schill said. “And this new drug will hopefully keep the ball from dropping in the future or ever again.”