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Fungal meningitis victim hopes Congress hears: 'It's torturous'

Photo courtesy Margaret Snopkowski

Margaret Snopkowski, 51, of Michigan, holds her 11-day-old grandson, Ethan Edward Jackson. She missed the baby's birth after becoming gravely ill with fungal infections tied to tainted drugs in a national outbreak.

Margaret Snopkowski was supposed to be in the delivery room on Oct. 24, when her first grandchild, Ethan Edward Jackson, made his debut in Pittsburgh.

Instead, the 51-year-old Fowlerville, Mich., woman was nearly 300 miles away, lying in a hospital room in Ann Arbor, so sick with fungal meningitis that she was barely aware when the baby boy was born.

“For the most part, she wasn’t coherent,” recalled Courtney Jackson, 27, Snopkowski’s daughter. “The greatest moment in my life was being overshadowed by the worst moment in hers.”

Courtesy Snopkowski family

Tom and Margaret Snopkowski before she fell ill with life-threatening fungal infections tied to contaminated back pain shots.

As her daughter gave birth, Snopkowski was grappling with searing headaches, incessant vomiting and lower back pain so severe that a video taken in the hospital shows her whimpering and moaning, “Oh my god, Oh my god, Oh my god,” as a nurse gently advises, “Just breathe.”

Snopkowski was one of the first victims in the still-growing outbreak of fungal meningitis traced to contaminated steroid injections that have sickened 483 people and killed 32, according to federal health officials.

“It’s torturous,” said the previously healthy saleswoman for a concrete contractor, reached by phone in her room at St. Joseph Mercy Hospital in Ann Arbor, where she’s been getting treatment since early October.

Victims and their families hope that their plight will remain the focus of two congressional committee hearings set for Wednesday and Thursday, sessions expected to include Food and Drug Administration chief Dr. Margaret Hamburg and Barry Cadden, the owner and managing pharmacist of the New England Compounding Center, the Massachusetts pharmacy responsible for distributing the contaminated steroid drugs blamed for the infections.

Congressional investigators subpoenaed Cadden last week after he indicated he would not appear voluntarily.

At issue is whether federal and state regulators did enough to control NECC, or whether they let known problems dating to 2002 continue unabated. Federal and state officials have found evidence of environmental mold and fungus dating at least to January at the NECC site, documents show. The firm also was distributing drugs in bulk, contrary to regulations that require that compounding pharmacies to mix custom drugs to order for specific prescriptions.

Not only did Snopkowski contract life-threatening fungal meningitis, which causes inflammation of the membranes that protect the brain and spinal cord, but, like growing numbers of outbreak patients, she also has developed arachnoiditis, a painful, hard-to-treat infection of the nerve roots at the base of her spinal cord. Other patients -- perhaps up to a third of victims -- have also developed abscesses at their injection sites, medical experts say.

Worse, doctors aren’t quite sure what to do about it.

“We’ve never seen this disease before; it’s never been described,” said Dr. Anurag Malani, the infectious disease expert at St. Joseph Mercy Ann Arbor who is treating Snopkowski and others. “The story is being told every day and we continue to turn the page.”

Snopkowski’s trouble started on Sept. 13, when she received an epidural injection of the steroid methylprednisolone at Michigan Pain Specialists of Brighton. She’d been getting the shots every few months for five years to help ease the pain of degenerative disc disease in her lower back.

Sometimes the shots would help, sometimes they wouldn’t, but Snopkowski, an avid cook and gardener, wanted to stay active.

“It was, let’s do this as opposed to taking pills,” she said.

But Michigan Pain Specialists was among 76 clinics in 23 states to receive some 17,000 vials from three lots of NECC methylprednisolone contaminated with fungi. Nearly 14,000 people got the shots.

A week after the injection, Snopkowski said she began to feel like “something wasn’t right,” followed by low-grade headaches and then searing back pain different from anything she’d felt before.

When she got a call from the pain clinic warning that her injections were tied to an emerging outbreak of fungal meningitis, she got scared.

“Of course, I panicked,” she said. “I had all the symptoms.”

A spinal tap showed alarming evidence of infection. Within a day, Snopkowski was sent to St. Joseph Mercy. She was one of the first patients who contracted fungal meningitis caused by the black mold Exserohilum in the tainted drugs.

Snopkowski was placed on powerful antifungal drugs and at first seemed to respond. After 11 days in the hospital, she was sent home, but she was back within a week in unbearable pain.

That’s when doctors found the second infection. Malani, the infectious disease expert, said they can’t drain it, they can’t operate on it and it is responding slowly to the antifungal drugs.

Snopkowski’s treatment is also complicated because she had a bad reaction to one of the drugs, amphotericin B, and her body seems to metabolize the other commonly used medication, voriconazole, too quickly.

“We have to do some devious things to keep her levels up,” said Dr. Carol Kauffman, a University of Michigan expert in fungal infections who is consulting with St. Joseph Mercy on the outbreak, in addition to advising the U.S. Centers for Disease Control and Prevention.

Snopkowski has started taking Prilosec, an antacid, in hopes of helping her body hold on to the antifungal drug. She’s also had problems with plummeting potassium levels that caused heart trouble.

Snopkowski and her husband, Tom Snopkowski, 46, a contractor, say her days alternate between blinding pain and constant uncertainty about what the future holds.

“I’m supposed to be here two more weeks but it could be two months,” she said. “(The doctors) can’t give us anything because they don’t know.”

Courtesy Snopkowski family

Margaret Snopkowski, shown here with daughter Courtney Jackson, was vibrant and healthy before she got tainted back pain shots on Sept. 13.

Snopkowski is frustrated at the interruption in her work and her life, especially time with her daughter and the new baby. She saw Ethan once, when he was 11 days old, when Courtney brought him to the hospital chapel for a 15-minute visit.

“I started crying. She started crying,” Snopkowski said.

The family is outraged that NECC’s actions could have had such dire consequences for Snopkowski and other victims.

“It makes me sick, it honestly does, for someone to be so negligent,” Courtney Jackson said. “It’s 2012; this shouldn’t be happening.”

Snopkowski is suing NECC. Her lawyer, Elizabeth Kaveny of Chicago, also represents two other outbreak victims. She was referred through the InjuryBoard.

“NECC’s disregard for the safety of patients is unforgivable. That extends to its officers, directors and employees,” Kaveny said. “These individuals intentionally allowed filthy conditions and contamination to occur, creating a danger that NECC chose to expose to innocent people.”

Kaveny said she plans to push for criminal penalties for NECC agents. A lawyer for NECC did not respond to an NBC News request for comment.

Kauffman, the fungal disease expert, acknowledged the frustration that Snopkowski and other victims feel.

Doctors, too, are frustrated, she said. Fungal infections are rare in general, and infections with the molds involved in this outbreak are even scarcer.

“This is unlike anything we’ve ever seen before,” Kauffman said. “There’s nothing equal to this in my career.”

Unfortunately, neither she nor anyone can advise patients what to expect next. For now, they’re all trying to get through each day.

“When you’re dealing with people in pain, that’s the best thing,” she said. “We go day by day. This is all new territory.”

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