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Elkhart woman fighting fungal meningitis still hanging on to hope

A woman who was diagnosed with fungal meningitis in February is still struggling with her health.
Posted on Sept. 28, 2013 at 1:00 a.m.

ELKHART — Some days are more difficult than others.

Some days, Terry Trost feels optimistic. She watches “Duck Dynasty” on television, goes to church and spends quality time with her daughter. Other days are dark. The pain in her lower back is unbearable, she feels hopeless and has trouble falling asleep at night.

These ups and downs stem from an injection that Trost received a year ago on Sept. 26 to relieve back pain. The shot turned out to be contaminated, and five months later she was diagnosed with fungal meningitis. She developed the illness after being exposed to tainted drugs manufactured by the New England Compounding Center in Massachusetts. Batches of the medications had been distributed to about 75 clinics in 23 states, including six in Indiana.

Trost received her injection at OSMC Outpatient Surgery Center in Elkhart, which contacted roughly 400 patients last fall who had received shots from a contaminated batch of drugs. The case count for fungal meningitis is up to 750 people in 20 states, including 64 deaths, according to the U.S. Centers for Disease Control and Prevention.

‘THEY SHOULD HAVE KNOWN BETTER’

Seven months after finding out that she had fungal meningitis, Trost is still struggling. She visits her doctor’s office in South Bend every Monday to monitor her health and medication intake. In the waiting room, she has met several other patients who are fighting the potentially deadly illness.

“It helps to talk to somebody that’s going roughly through the same thing,” Trost said.

Trost’s daughter, Nicole Kovach, often drives her to medical appointments. Kovach received an injection the same day as her mother and became sick shortly after. Though it was a different medication, the drug was manufactured by the same company that distributed the tainted injections. Kovach did not develop fungal meningitis but periodically has back pain that she attributes to the shot.

The medications Trost is on to treat her illness have wreaked havoc on her body. Her skin is sensitive to sunlight, her hair is thinning, her eyes are watery and her weight fluctuates. Trost said she is often discouraged by her health.

“I have days where I sit and I think about death quite a bit,” she said. “I think about my kids, if they’re going to be OK, especially Nicole. She’s so attached to me, and she takes care of me. She says she’s seen me deteriorating. Those are her words — deteriorating in front of her.”

Trost said she has trouble talking about her illness without getting angry, recalling a segment on “60 Minutes” that aired in March on CBS highlighting the national impact of the fungal meningitis outbreak and the problems discovered at the New England Compounding Center.

“I cried,” she said. “At the end when they were talking about how they knew it wasn’t clean, they knew that there were problems and they knew that there were issues that they didn’t address, I was infuriated. I was so mad. If they saw that it was dirty, why didn’t they take the time to clean? They should have known better. Why didn’t they take the time?”

A DEVASTATING PROBLEM

To date, 51 cases of fungal meningitis and related infections have been reported in Elkhart County. Three residents have died as a result of the illness.

“While many of these patients are off treatment now, it is still a challenge for some,” said Dr. Daniel Nafziger, the county’s health officer.

The outbreak made for a challenging year for health professionals nationwide. Nafziger worked closely with the state health department and the U.S. Centers for Disease Control and Prevention, which coordinated conference calls with clinicians across the country who were able to report their experiences with fungal meningitis.

Nafziger said he was impressed with the quality of care that staff at OSMC and Elkhart General Hospital provided to patients.

“I feel like the clinical response was very good in Elkhart County, but still, it was a pretty devastating problem for the patients who were impacted by the infections,” he said.

THINKING ABOUT THE WORST, HOPING FOR THE BEST

When Trost was diagnosed with fungal meningitis, her doctor said treatment would last roughly three months. But when her health didn’t improve, three months turned into six months, and six months has now been extended to a nine-month treatment plan.

Trost hopes to end December with good news when her doctor is scheduled to re-evaluate her health once more.

“I’m hoping for them to say, ‘OK, you’re finished,’” she said. “I think about the worst and hope for the best.”


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