Vaping-related lung illness remains mysterious, hard to diagnose

As her only child lay hooked to a breathing machine a month ago, Geri Sullivan flashed back to the day 16 years ago when her husband died of a sudden hemorrhage.

“I felt like my world was crashing down – again,” recalled Sullivan, 54, of Aston. “I held Eddie’s hand and told him over and over again how much I loved him.”

Eddie, 17, was suffocating as his lungs battled an injury linked to e-cigarette use – although he didn’t disclose his vaping habit until doctors pressed him. On Friday, two months after the mysterious disease was first officially recognized, the U.S. Centers for Disease Control and Prevention said 46 states have reported 805 cases, including 12 deaths. Pennsylvania, with 14 cases, and New Jersey, with nine cases, are investigating dozens more that are suspected.

Eddie has mostly recovered and resumed his senior year in high school. His case illustrates the challenges that physicians face as they confront an explosion of “vaping-associated pulmonary illness,” or VAPI. Not only is it still unexplained, but it is linked to unregulated products that teens may be afraid to admit using.

“There is no test of the blood or the lungs that we can say: ‘This is definitely from vaping. It’s a diagnosis of exclusion,' ” said Nicholas Slamon, a pediatric critical care specialist who treated Eddie at Nemours Alfred I. duPont Hospital for Children in Wilmington. “If you had said to me a year ago, ‘vaping pneumocitis,’ I would have said it doesn’t exist.”

More than a quarter of high school students have used an e-cigarette — a battery-powered device that converts liquid nicotine to an inhalable mist — in the last 30 days, up from 21% last year, according to federal survey data released last month. Juul and other e-cig makers add fruit or candy flavors that appeal to youths, even though the minimum age for tobacco products is 18.

Sullivan knew her son, a strapping football player, had at least tried vaping.

“I found an empty Juul pod in the laundry. It looked like a flashdrive,” recalled Sullivan, who teaches kindergarten. “I was very naïve. Eddie said, ‘Mom, it’s just mango vapor and it’s totally safe.’ ”

» READ MORE: Broomall teen hospitalized for vaping-related lung illness

While hospitalized at Nemours for two weeks, he would confess to vaping the nicotine equivalent of a pack of cigarettes a day for more than a year. He bought Juul cartridges — or what he thought was authentic Juul pods — at a gas station.

“Eddie revealed more and more as time went on,” Slamon said. “He admitted to vaping THC,” the psychoactive component of cannabis.

Although the CDC hasn’t identified a specific toxic chemical culprit, it does know that most VAPI patients are male, 18 or younger, and report using products with THC.

“THC is the most prominent link across patients,” CDC deputy director Anne Schuchat said Friday during a teleconference.

The CDC has advised clinicians with suspected VAPI cases to get a detailed history of devices, substances, sources, and usage.

» READ MORE: Vaping without nicotine still harms blood vessels, Penn study shows

Slamon said he was familiar with vaping technology because he has two teenage children. They told him that kids at their school disable the bathroom vapor detector to hang out and vape.

Many health-care providers aren’t so savvy.

“Doctors who see younger patients have to go look vaping up and figure out what the patients are talking about,” said Margot Savoy, chair of family medicine at Temple University Hospital. “I’m lucky because, in a previous role with the American Academy of Family Physicians, I looked into the types of new products.”

“We need to get better about asking about vaping separate from smoking,” said pulmonologist Frank Leone at the Hospital of the University of Pennsylvania, which has treated three VAPI cases.

Because vaping is expensive (Juul’s e-cigarette costs $50 and four cartridges are $16), a black market of counterfeit products has arisen.

“It’s an unbelievable opportunity for bootleggers to get into this business without understanding the risk of harm,” said Jamie Garfield, a pulmonologist at Temple University Hospital.

Many respiratory infections have symptoms similar to VAPI – a problem that public health experts say could be complicated by the coming flu season. And not all VAPI symptoms are respiratory.

Eddie, for example, started out with stomach pains, vomiting, and a fever at the end of July. Doctors at Riddle Memorial Hospital did chest X-rays, diagnosed pneumonia, and prescribed antibiotics.

But those symptoms, which have been reported by many VAPI patients, may be caused by nicotine overdoses. Matthew Divello, 18, of Medford, last week filed a product-liability lawsuit against Juul, alleging he developed a nicotine addiction that caused fever, nausea, vomiting, and behavioral and cognitive problems.

After two days of antibiotics, Eddie developed chest pains and shortness of breath, so his mother rushed him to Nemours.

Testing ruled out pneumonia, tuberculosis, a lung blood clot, cardiac problems, and exotic diseases.

“They asked if we’d traveled out of the county, or touched reptiles,” his mother recalled.

Even on a ventilator, his blood oxygen levels fell lower and lower over the next week.

Slamon had just read a journal article about a patient, an admitted vaper, who was rescued from respiratory distress by steroids, and suggested trying it. “Eddie got steadily better” on steroids, Slamon said, and went home after 12 days.

Over the last week, as case numbers have mushroomed, Juul halted U.S. advertising, Walmart stopped selling e-cigarettes, and Massachusetts suspended sales of vaping products.

Eddie and his mother, meanwhile, were interviewed by federal health investigators.

The teenager has sworn off vaping and urged his friends to do the same. He is deeply “embarrassed" about "making a bad choice” and doesn’t want to talk publicly, his mother said. But he agreed to let her share his cautionary tale.

“Talk to your kids about vaping,” Sullivan wrote on Facebook. “Educate them on the dangers. Share my son’s story.”