Royersford woman bounces back from mysterious disease
March 13, 2013
A few months ago, 23-year-old Erica Schmidt was on the kidney-transplant list. She got off that list in the best possible way.
You’re probably thinking she got a kidney donor. Nope – her own kidney healed.
Erica has a rare genetic disease called atypical hemolytic uremic syndrome. AHUS sends the blood-complement system (which normally helps maintain immunity) into overdrive, producing way too many complement proteins. Cells along the blood vessel walls become damaged and platelets become overactive, causing clots that can lead to severe organ damage.
Patients can suffer heart attacks, strokes, blindness, kidney failure and death. There are believed to be only 300 aHUS patients in the entire country, and most of them are children or young adults, according to the Foundation for Children with Atypical HUS. In most respects, Erica was pretty lucky.
Her doctors noticed clues in her lab work that led to a diagnosis within about six months. Even luckier, the FDA had just approved a drug to treat aHUS. She started taking Soliris last February, and almost immediately was able to stop the near-daily plasma exchange treatment.By November, her kidneys had bounced back to about 70 percent of their former strength and she no longer needed dialysis.
Now Erica’s back to work full-time, teaching 3-year-olds at a preschool near her Royersford home. She has a new boyfriend and a new role in a Star Wars costuming society. But getting back to “normal” wasn’t easy.
Mysterious illness Erica was vacationing with her family at the Jersey Shore in July 2011 when she got sick with what they thought was the flu, or mono. Her physician thought she was just dehydrated, and sent her to the hospital for fluids. Once there, tests showed she had a low red-blood-cell count. “Your hemoglobin numbers should be 11 or 12, and Erica’s was at 5,” said Denise Schmidt, who has come to sound like a medical professional since her daughter’s illness.
“They diagnosed her with TTP, which presents itself similar to what Erica has … and they treat it much the same way.” Treatment included plasmapheresis (a process in which the blood’s plasma is purified or replaced) 2 hours a day, 4 days a week, and dialysis (which does the kidney’s job, cleaning toxins out of the blood) 4 hours a day, 3 days a week. The treatments seemed to be working, and after a few weeks Erica felt well enough to return to work and act in the closing weekend of “The King and I” with her community theater group.
“So I was on stage, dancing and singing, and I went to the cast party afterward,” Erica said. Two days later she was sick again. “I ended up having to stay in the hospital for like 24 days.”
Erica’s kidneys were failing, and she was readmitted to Phoenixville Hospital. “Hematologists, pulmonologists, infectious disease experts … and they all come in the morning, so by 10 o’clock she had seen like eight different specialists,” Denise recalled. The doctors at Phoenixville tried a bunch of different medications and doses, searching for a mix that would treat her high blood pressure, her anemia and her kidney failure. “When I was in the hospital, I felt sick but I didn’t feel like it was that bad … I thought, ‘I just need a really good nap and I’ll be fine,’ ” Erica said.
But as the weeks went on, “There was one point where I just really couldn’t get out of bed. I was just so weak.” She would wake up for dialysis in the morning swollen with excess fluid, stretching her 100-pound frame to as much as 130 pounds. “Her eyelids were swollen, her hands, her feet. She looked like a different person,” Denise said. Dialysis eased the swelling and cleaned out her system, but caused severe headaches and pain.
“It was horrible. It was like being hooked up to some creepy torture machine,” Erica said, recalling the hours she spent surrounded by elderly patients. Her mom wasn’t allowed in because the room had to remain sterile. Extreme measures At that point, doctors said Erica was suffering from end-stage renal disease.
They were still trying to figure out what was causing it, and pushing forward with plans for a kidney transplant. “We were all upset,” said Dr. Pallavi Rastogi, the oncologist and hematologist who led Erica’s treatment team. “She was 22 at the time, and HUS in itself is a very traumatic disease.
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