Wheaton senior overcomes challenges, graduates
COVID-19 has thrown many people for a loop in recent months, but for others, like Wheaton senior Lillian Allen and her mother Kim Tiede, health disruptions and overcoming them are just a way of life.
Allen has spent four years battling a respiratory disease for which a diagnosis had been difficult to obtain.
“It has been quite the struggle,” Tiede said. “When Lillian was in seventh grade, she started having breathing problems. She rarely gets sick, but when she does, she’s not very compliant with medications.
“She had kidney reflux as a child, which is rare, and her primary care provider thought she has Kawasaki disease, [which causes inflammation of the blood vessels].”
Tiede said when the breathing issues started, doctors put Allen on an inhaler, but the condition continued spiraling downward.
“We got her a pulmonary function test, and it said she was fine, but then that doctor’s office said they didn’t think
the machine was working properly,” Tiede said. “We went to another doctor who said she didn’t need that test, and we eventually ended up at Cox Monett, where they did the test and confirmed she had a restriction.”
From there, Allen was referred to a pulmonologist (respiratory doctor) in Kansas City. Multiple tests were done there in Allen’s freshman year, some of which were strenuous.
“At first, they kept telling me because I just got divorced and we moved four times that she was having anxiety and that was causing the breathing issue,” Tiede said. “They did a bunch of tests from November to April of her freshman year. One of them was an exercise tolerance test, and I thought I was going to watch her die right in front of me there.”
Tiede and Allen went on to see an ENT (ear, nose and throat) doctor, who coordinated with the pulmonologist and determined there was an issue.
“They said it was a 1/1,000 chance they’d find something wrong, then they came back and said she had a bulge in her trachea that was dynamic and that they didn’t know why it was there.”
Allen then had a CT scan, which revealed her right subclavian artery was actually left of her left subclavian artery and more toward the back of her aorta, creating the bulge and causing the need for open heart surgery.
“Our ENT really went to bat for us and said Lillian needed the surgery,” Tiede said. “I took it upon myself to call a doctor in Boston, had her records overnighted there, and we got an appointment in August and the surgery scheduled for September 2017.”
Tiede said the typical 6-hour surgery went on for 13 hours, as complications led to Allen being on bypass after hemorrhaging.
“When they moved her artery, it was what they call “friable,” so it basically disintegrated and she started hemorrhaging,” Tiede said. “It was more serious than they thought, and it turns out that her artery being friable may have been caused by Kawasaki disease.”
After the surgery, Allen was on a ventilator for five days, and after then, the struggles continued. Doctors in Dallas and Little Rock said anxiety was the root cause of her breathing issues, but Tiede said she knew more was going on.
“Her diaphragm didn’t move, which is common after open heart surgery,” Tiede said. “We finally saw a neuromuscular neurosurgeon in St. Louis that got us more specialized tests, and those showed Lillian has small airway disease.
“She’s had four different appointments for that, but with COVID-19, we can’t do any more right now,” Tiede said.
While Allen continues to battle the breathing issues, Tiede said seeing her daughter graduate high school, given everything that has happened in the last four years, was a moment to be proud.
“In her sophomore year, she tried to go to school, but it was tough after the open heart surgery,” Tiede said. “In her junior year, she had to stay home for most of it and do classes online because of other viruses going around that could make things worse for her. Now, she’s in the top 10 of her graduating class, and I just give her so much credit for never giving up no matter how hard it was.”
Tiede said there were plenty of tough moments along the way.
“Some subjects did not come easy to her, like math,” Tiede said. “One summer, Glynn Bennion came over almost every day to tutor her and get her to junior year. If not for that, I don’t know if she would have graduated.”
Tiede said she also still gets emotional thinking about watching her daughter walk across the stage Thursday, and the irony of the altered graduation ceremony was not lost on the family.
“We have not had a normal life for four years, so this graduation was no big deal for us,” she said. “I think she will go to Crowder for now, then she wants to go to a four-year college to become a social worker. I think through all this she saw how much the social workers helped me through the craze, and she’s always been one to help other people.”
Tiede said there have been many cooks in the proverbial kitchen, and she’s thankful for all of them.
“I’ve learned the last four years how to fly by the seat of my pants, and I would tell any parents out there whose children have health troubles that it will all work out,” Tiede said. “I have an incredible church family that helps me with things, and I encourage people to help others, because I can’t imagine having to have done this entirely all on my own.”
Tiede is also hoping for the return of more singing in her life, as she said Allen has an incredible voice.
“Lillian used to sing 24/7, and that’s one reason I went as hard as I did with the doctors and specialists, because I knew her stopping singing as much was a sign,” Tiede said. “She sings mostly country and Christian music, and my favorites that she sings are ‘Oceans’ by Hillsong UNITED and “Piece by Piece” by Kelly Clarkson.
Editor's note: to hear Allen singing "Piece by Piece," visit: www.youtube.com/watch?v=UNQdVGLHaJs&feature=youtu.be