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Surviving another kind of war: flesh-killing necrotizing fasciitis

  • Pittsburgh Post-Gazette
  • Published Friday, July 11, 2014, at 7:08 a.m.
  • Updated Friday, July 11, 2014, at 12:35 p.m.

It started suddenly, with a pain in Erik Jones' upper left leg as he was helping a friend move lumber in May 2012. Then came fever, chills and vomiting.

He went home and got into bed, pulling the covers up to his chin. The young man thought he could just sweat it out, as he had all his childhood fevers. But at 8 p.m., he called his mother on her cell phone as she was driving back from a dinner out. "It hurt so bad he couldn't get out of bed," said Terri Jones, 54.

She drove him from their home in Elizabeth Township, near Pittsburgh, to Jefferson Hospital, and by 6:30 a.m., surgeons were wheeling him into the operating room. They had already warned Jones' parents that they might have to amputate his leg.

He had necrotizing fasciitis, a bacterial infection that attacks connective tissue deep beneath the skin. This tissue, called the fascia, forms a continuous layer around the muscle, so bacteria can speed along it from one part of the body to another. The disease is rare - annually, there are 500 to 1,500 cases in the United States - but it is harrowing. Not only can it turn your skin black, or make it lumpy as bubble-wrap, if left untreated, it can also kill you.

The story of Erik Jones' necrotizing fasciitis has a happy ending. The 24-year-old is completely healed after two years of fighting the disease. Yet a medical SWAT-team could not just swoop in to rescue his overwhelmed immune system. Instead, his doctors had to coax his body into accepting the procedures that would save his life.

The bacteria that can cause the necrotizing fasciitis are around us all the time, living on our skin and in the soil, explained Amesh Adalja, an infectious disease specialist at University of Pittsburgh Medical Center. The most common are group A Streptococcus, which also cause strep throat. Why these species turn into a deadly illness for some and not for others remains a mystery.

"You may get it and just get a little pimple. It may not turn into the disaster it was for Erik," said Kelley Smith, one of Jones' surgeons at Jefferson Hospital.

Risk factors include being diabetic or immunocompromised, but neither was true of Jones. And, as Dr. Smith said, necrotizing fasciitis is not contagious.

But once an infection begins, the bacteria can wreak havoc. "Just as bacteria decompose an animal that has died on the forest floor, they can use enzymes to decompose live tissue," said Dr. Adalja. "These bacteria are using the nutrients provided by our tissue to live."

On that day in May 2012, surgeons cut away the infected flesh as fast as possible to prevent the disease from spreading. But the next day, they found another area of infection, lower on his leg, and they began another emergency debridement.

After this second surgery, doctors told Terri Jones that they were fighting not just to save her son's leg, but also his life. "I told them to get him out of recovery and back into the operating room. I'd rather have him without a leg than not have him," she said. But as a school-bus driver, firefighter, hunter and fisherman, Jones had already decided to keep his leg. The doctors wanted to respect that.

There were setbacks. Jones was allergic to two of the antibiotics he was receiving intravenously, and they had to prescribe others. His immune system rejected the skin taken from a cadaver and grafted onto his leg; the graft had to be redone with his own tissue. Then, these grafts were disturbed by an allergic reaction to poison ivy, landing him back in the ICU.

Recovery was slow and painful. For 10 weeks, he spent two hours every weekday in a tube where high concentrations of oxygen helped his wounds heal. And for each change of dressing, Jones was brought into the operating room and anesthetized.

"If you have a pain scale from 1 to 10, the pain from this is 100," Jones recalled. But he remained upbeat throughout, telling his parents "It's all good" after every surgery.

Jones still has both of his legs, and he is driving school buses again. "I'm not an interior firefighter anymore," he said. "I'll never put a mask on again." But he is the department's engineer, helping put out fires from the truck. And he is back to his favorite outdoor haunts, like the Youghiogheny River, where he fishes for trout, bass, pike and walleye.

His mother, who took a leave from work to care for her son, has a new job at the local EMS department. "He's here, he has his leg, he's working, he's walking," she said. "All those thousands and thousands of prayers were answered."

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