WOMAN 'SUFFOCATING' IN CHEST SPENDS YEAR FINDING OUT WHY SHE CAN'T BREATHE
"Inhale through your nose, and exhale through your mouth."
You may have used this deep-breathing technique at some point to regulate your breaths, help you unwind or de-stress. It's a simple trick for most, but not for Kennedy Van Komen, 21, who spent a year trying to figure out why breathing had become so difficult for her.
Van Komen, of Salt Lake City, told Newsweek that her health journey started on a call with her mom last summer. "Are you sick?" her mom asked when she noticed her daughter wheezing.
That was the first time Van Komen had thought about her breathing, and once it was pointed out, she realized her breathing was "abnormally loud" whenever she walked anywhere, even for short distances.
Van Komen said, "I wasn't necessarily concerned for my health at that point because there were so many factors that I thought could be contributing to my heavy breathing, including fatigue from working in the heat and humidity."
Just to be sure, she visited her family doctor, where she used a peak flow meter to measure her airflow. Even with her hardest breath, "the lever barely moved." The doctor even brought in another nurse for a second opinion, as they thought the apparatus was broken.
The doctor told Van Komen that she was "in pretty bad shape" and prescribed an asthma inhaler to help, but it had little effect.
"I went back to Utah State University in late August and immediately noticed I was still wheezing and getting out of breath when walking to class," she said. "I had been active my entire life and was frustrated that I could barely breathe just from walking."
Van Komen continued: "I started to worry that it was something serious. I remember walking up two flights of stairs to class and then running to the bathroom to use my inhaler. I was so embarrassed about my heavy breathing, and I needed to cough desperately. In a post-COVID world, I didn't want people to think I was sick."
As her breathing continued to get worse and Van Komen felt as though she were "suffocating in [her] own throat," she went searching for answers—undergoing a lung function test, a CT scan, an X-ray on her chest, an electrocardiogram and blood work.
The tests came back clear, which Van Komen said was "beyond frustrating" because something was obviously wrong. She started to feel guilty and wondered if it was in her head.
"It was becoming harder to do the things I loved. I stopped doing high-intensity workouts, playing pickleball, and even stopped going on walks. When I tried to be active with my friends and family, I felt lightheaded very quickly and coughed for long periods," she said.
"I was having coughing attacks multiple times a day, wheezing when I walked across the room, constantly had a sore throat and lost my voice," she continued. "I truly wasn't feeling myself."
Finally Getting an Answer
In May, Van Komen met with a speech and language pathologist who suggested a bronchoscopy, a procedure in which they would place a camera down her throat—hopefully allowing them to see any damage that the previous tests didn't identify.
The procedure worked, and the problem became clear immediately. After months of searching, Van Komen received a diagnosis: idiopathic subglottic stenosis.
Speaking to Newsweek, Dr. William Franklin, the founder of Victory Medical, defined the condition as the narrowing of the airway below the vocal cords, making breathing more difficult.
"It can be congenital or acquired through infections, airway trauma or chronic acid reflux," he said.
The condition is rare, affecting 1 in every 400,000 people, according to the Cleveland Clinic. It predominantly affects women between the ages of 30 and 60. And its causes include intubation, injuries damaging the airway and autoimmune disorders. There may also be no known reason for why it develops, as in cases such as Van Komen's.
Van Komen's airways were more than 70 percent closed where the scar tissue developed, so she was urged to have surgery as soon as possible.
In June, Van Komen underwent an endoscopic dilation, which involved placing a balloon in her windpipe and dilating it to open the airway. She also had the scar tissue lasered and a steroid injection.
"After the surgery, it was the most amazing feeling," Van Komen said. "Breathing, something that normally you don't think about, was all I could think about. My first couple of deep breaths were so relieving."
"I cried on the car ride home with my mom, feeling so grateful that I was able to have the procedure and feel hopeful for the future," she continued. "It felt so good to finally have answers and a plan for my health moving forward."
Van Komen's breathing has continued to improve, and she now feels unstoppable. She completed her first high-intensity workout since last year, and she can't wait to start playing pickleball again.
Though she is celebrating, she knows the condition is expected to continue, as the scar tissue is likely to grow back. She may need to repeat the endoscopic dilation every one to three years for the rest of her life, but she remains optimistic.
"It's crazy how much my attitude about life has changed post-surgery," she said.
Documenting Her Experience Online
Throughout the past year, Van Komen has documented her experience in video recordings, as she wanted to keep them as a journal. She said it was her "way of coping" with her confusing health journey.
When she finally had a diagnosis, she shared her experience on TikTok, under the handle @ken0dy. The June 24 post went viral, receiving more than 2.9 million views and 374,500 likes, and many social media users praised Van Komen for raising awareness of subglottic stenosis.
Van Komen said of the videos: "I didn't make them with the intention of sharing them, but I was hoping there would be a happy ending.
"The response has been supportive, loving and inspiring. I was hoping to connect with others who have the same condition, but instead, I spent nights reading thousands of comments that were filled with people's stories and kindness. I feel like I have gathered a community of people who understand this rare disease and who can support each other.
"I hope I was able to help people who have had similar symptoms to me and show people that you always have to be your own advocate."
Among the 1,400 comments on TikTok, one person wrote: "Omg, so glad you were able to get a diagnosis. That is so scary. The pictures!! That is insane the difference in size of the airway."
Another added: "Moms are the best. Girl you were quite literally breathing through a straw. Gosh. I'm so glad you found relief!"
Another commenter said: "I have this disease too! It's very scary not being able to get a diagnosis for so long. It gets better."
Is there a health issue that's worrying you? Let us know via [email protected]. We can ask experts for advice, and your story could be featured on Newsweek.
2024-07-20T09:55:53Z