It’s 4:58 p.m. on a Monday evening, and 16-year-old Karin Hostetter is pushing a sled weighted down by three 45-pound plates. She’s inside the THRIVE room on the bottom floor of the Universal Athletic Club in Manheim Township. To her left is personal trainer Kelly Drexler, who is holding a small machine that takes in the oxygen in the room, purifies it, and feeds the purified air back through a small tube that runs from the machine to Hostetter’s nostrils.
Up until about a year ago, Hostetter was a three-sport athlete at Lampeter-Strasburg High School, where she juggled soccer, swimming and lacrosse. A rare lung disease took all of that away. Now a junior at L-S, she is no longer able to play school sports because she must be hooked up to the oxygen machine. More on that in a bit. Because right now the blonde-haired, hazel-eyed Hostetter isn’t letting this condition silence her inner athlete.
“I still have to push myself because I can’t let my body deteriorate away,” she said. “I still have to be healthy. And since I’m still young they (doctors) still want me to push myself and not give up.”
Over the course of an hour inside the athletic club, Hostetter will stretch, push the weighted sled, slam a 10-pound medicine ball on the floor, jump from the floor onto the top of a 24-inch tall box, push a pair of 35-pound dumbbells up from her chest while laying on a bench, and squat with a 50-pound dumbbell, among many other exercises. In between each exercise, she’ll rest on a bench to catch her breath, breathing in the purified oxygen from the machine through the tubes in her nose and exhaling through her mouth. It’s then she’ll also place a Pulse-ox device on the pointer finger of her right hand. The device measures the saturation of oxygen in her red blood cells.
“The ideal place where my oxygen level should be is 90 to 100,” Hostetter said. “As I exercise it drops.”
She does this while waiting for the dizziness to subside.
“That’s from not having a lot of oxygen going to my body,” she said.
Those are a couple of the side effects from Children’s Interstitial Lung Disease, the rare condition with which Hostetter was diagnosed in June 2017.
“As we all breathe in, air travels through the airways to the tiny air sacs called alveoli,” said Jessica Gross, a nurse practitioner at Children’s Hospital of Philadelphia. “These alveoli are the sites where oxygen enters our blood stream and carbon dioxide leaves. The area between the alveoli and the small blood vessels is known as the interstitium. When the interstitium is damaged by inflammation and scarring, it can reduce the lungs ability to absorb oxygen and release carbon dioxide.”
Gross is among a team of pulmonologists, nurse practitioners, physical therapists, registered dietitians, social workers and other nurses at CHOP working to improve Hostetter’s condition. While the team has found a diagnosis, Hostetter said it’s still trying to find out what originally caused the scarring on her lungs, which will help determine a course of action to treat her.
“Children’s Interstitial lung disease is a group of rare lung diseases found in children,” Gross said. “There are many different types of chILD, but all types decrease a child’s ability to supply oxygen to their body. Sometimes, like with Karin, the exact cause of the lung disease is unknown despite many medical interventions and tests.”
“Recently my whole body has been achy and sore,” Hostetter said. “(The doctors) think it’s because I’m not getting oxygen now. And the oxygen goes to every single organ in the body to help it function. And the less oxygen I have affects everything. It’s been affecting my brain where I don’t remember things anymore. Or I get confused.”
It’s led to trouble with completing her classwork, as she’s recently shifted to taking classes through cyberschool while trying to complete the necessary course work to complete her junior year.
“I used to be semi-fine, where I could push through school,” Hostetter said. “But if you put a paper in front of me now I can work on it for five minutes and then I’m done. I can’t do all of it, if that makes sense. It’s been hard on my parents.”
And on the rare good days when she is able to make it into school, Hostetter admits she leaves the oxygen machine in her Honda Pilot. It’s here one is reminded that Hostetter is a teenage girl, a point in life where she and others her age are perhaps more image-conscious than ever.
“I go against the doctor’s orders,” she said. “I do realize I am compromising my health at this point. But it’s very hard being a 16-year-old girl wearing oxygen like this. ... I’m OK with people knowing I’m sick. But I don’t want to show them I’m weak, if that makes sense.”
An attack on the lacrosse field through her freshman year of high school, Hostetter is still involved with L-S girls lacrosse program this spring, serving as the varsity scorekeeper. The Pioneers are actually holding a fundraiser for Hostetter on Thursday night in their regular season home finale against Cedar Crest.
The team has already raised more than $2,000 through a T-shirt campaign, and donations will be accepted at Thursday’s game. All the proceeds will go to help offset Hostetter’s medical expenses.
“I do wish some days I was back to my normal self, especially when I’m watching the lacrosse games,” Hostetter said. “I want to be out there playing with them and I want to feel the rush of everything again. But I can’t. And that’s OK.”
To answer that, Hostetter points out that she’s the oldest of three kids in her family. She wants to set a good example for her younger brother and sister of how to handle adversity. She also leans on her Christian faith.
“I saw a quote the other day that said something along the lines of God gives things to people to show them how strong they are and how good of a person they can become,” she said. “I know something is going to happen in the future and it’s going to show me, ‘Oh, this is why this is happening.’"