BERKS COUNTY, Pa. -- Lung illness caused by vaping is still so new to many people, including the doctors who treat it.
Medical experts say because the vaping products are not regulated by the Food and Drug Administration or FDA, they don't always know what is in them or how all of the chemicals interact inside the body.
A teenager from Berks County is sharing his story in an effort to deter teens from using those products.
"I'm known as the kid who almost died from vaping," said Xander Amidon of Berks County.
It's not the reputation the teen wants or ever thought he would have.
"I'm a good kid. I never really get in trouble," said Xander.
Xander played rugby at Governor Mifflin High School until what seemed like just a virus landed Xander in Reading Hospital.
"I just thought I was sick at first, and like had a cold, and then, I woke up, and I was completely ill," explained Xander.
Doctors put Xander on steroids, a number of antibiotics, and hooked the teen up to oxygen.
"Just watching him struggle to take every single breath. It was a mom's worst nightmare," explained Kari Ide, Xander's mother.
Fortunately, time was on Xander's side.
"I almost died. I was told by the doctors if I didn't come in at that time, and I came in a couple hours later, I most likely would have died or i would have been in a coma," said Xander.
Xander is one of more than 1,200 people who are suffering from a lung injury caused by vaping or electronic cigarette use, according to the Centers for Disease Control and Prevention or CDC. 26 people have died.
"I always had a dab cartridge, and I smoked a lot, and it just completely ruined my lungs," explained Xander.
Up until the diagnosis, Xander says he juuled and vaped THC cartridges just about every day; THC is the prime ingredient in marijuana. It produces the high people talk about. Xander says he bought the THC pods off his classmates and friends.
His mom says she had no idea Xander was doing it.
"You warn your children against it, you tell them not to do it, but they do what they want to do," said Ide.
The problem now?
"The long term effects... We don't know," explained Dr. Panagis Galiatsatos, the director of Johns Hopkins Tobacco Treatment Clinic in Baltimore.
Nobody, including Dr. G, seems to know what vaping will do to people's bodies down the road.
"My hope is that a lot of these patients is reversible, but we are going to find out that there is going to be irreversible damage and the thing about it - a 16 year old robbed of their lung function is heartbreaking," explained Dr. G.
The Johns Hopkins Tobacco Clinic was established last July. Since then, Dr. G says physicians have seen 153 people addicted to tobacco and nicotine, 33 of whom are addicted to electronic cigarettes. He says more than a dozen of those cases are kids.
"Like a science experiment is what they called me," said Xander.
"They called him a science experiment because they didn't know what cocktails, what medications would stop this from progressing," added Ide.
Flash forward to this fall: The food and drug administration issues a warning urging people to stop vaping THC. Researchers believe an additive found in some THC vaping products called Vitamin E Acetate could be dangerous when inhaled. However, the FDA says it's likely not the only chemical of concern in vaping products, which is why it's cautioning against adding any substances, including flavors and the ones sold at retail establishments, to existing vaping products.
"Even though we may know for instance chemical A, chemical B, chemical C, chemical D, them being together in my opinion is the first time so these chemicals interacting together may give birth to a whole new toxin we never heard of," explained Dr. G.
Dr. G describes it as a chemical cocktail that makes treating addiction very challenging. He says compare it to the David and Goliath bible story.
"If I don't even know how big Goliath is, it's hard to make a game plan to strike him down," stated Dr. G.
Traditional combustible cigarettes are regulated by the FDA; Dr. G says that makes it easy for doctors to ask patients what brand they smoke, how many packs a day, and develop a treatment plan from there.
"Because of these individuals buying pods and cartridges that are not FDA regulated, I have emailed Juul, for instance, and other companies, 'Please tell me what is in this. My patient is suffering pulmonary complications, and I need to understand,'" said Dr. G.
On top of not knowing all the ingredients, Dr. G says it is nearly impossible to figure out how much chemicals people have inhaled from e-cigarettes and vaping products.
"Meaning these chemicals may not be dangerous at very low levels, but with electronic cigarette users, they can take the pods and cartridges and puff pretty extensively throughout the day, far exceeding what we would ever recommend not to surpass in a daily amount," he said.
Even with all of those unknowns, Dr. G worries vapes and electronic cigarettes are still more appealing than smoking cigarettes, and it took decades before some people started taking the dangers of smoking cigarettes seriously. He fears the same thing is happening now, just with vaping.
"We do see it as, especially in the youth, the ability to act now, before we create a whole new generation of patients because we weren't as aggressive to get them off these products to begin with," said Dr. G.
For now, Xander is doing what he can at home. Mom tells FOX43 Xander is spending precious time with a new niece who he loves dearly. She says it's very difficult for her son to talk about what happened, but they're both sharing Xander's story to spare someone else the same pain.