Katelyn Strube-Bohaty was diagnosed with cystic fibrosis as a toddler
Life as a newlywed has been a breath of fresh air for Katelyn Strube-Bohaty, who underwent a double lung transplant to save her life just a year before her “fairytale” ceremony.
When Strube-Bohaty was an infant, she was diagnosed with meconium ileus, a bowel obstruction that occurs when a child’s intestines become stickier than normal. It was the first sign she had the genetic disease cystic fibrosis, a life-threatening and rare disorder that causes the cells that produce sweat and mucus to becomes thicker in organs such as the lungs, according to the Cystic Fibrosis Foundation. Because the sticky mucus in the lungs will hold on to bacteria, it increases the likelihood of infections, which causes extensive damage to the lungs over time.
“Because of all the complications, I spent my first six months of my life in a neonatal intensive unit, which is pretty long time for a baby. I’ve had a rough start from the beginning,” Strube-Bohaty, from Kansas City, tells PEOPLE. “My parents did everything they could to try to raise me as a healthy child, and live like I was normal, just like everyone else. But I needed 24-hour care, and had feeding tubes, IV antibiotics, frequent dressing changes, all kinds of pills to take.”
Patients with cystic fibrosis can typically experience bouts of pneumonia and bronchitis, persistent coughing, and wheezing or shortness of breath.
While Strube-Bohaty focused on living as active of a life as possible while growing up—by dancing, cheerleading and playing tennis—she came down with a severe case of pneumonia when she was a student at the University of Kansas that put her health in jeopardy.
“I was healthy my freshman and sophomore years, and I got hit with a bout of pneumonia that put me in the ICU for about a week,” she recalls. “It made me lose a lot of my lung function, which is the percentage of your lungs’ ability to work correctly or take in oxygen, and I wasn’t able to take deep breaths.”
Though doctors brought up the idea of a lung transplant, Strube-Bohaty felt confident she would be able to bounce back—even though she was only able to use 35 percent of her lungs.
“I was completely in denial. I was like, this is just a big bump in the road. I did everything I could,” she recalls. “Physical therapy, everything, just so I could get my lung function back. Well, I kept on being prone to infections, and I kept getting infection after infection.”
Strube-Bohaty was readmitted to the hospital so many times following her bout with pneumonia that she couldn’t go back to class.
“I was constantly in and out of the hospital,” she says. “I basically got to the point where all I was doing was taking care of myself, doing home IV’s, hooked up to air chest therapy and an aerosol machine for four hours, five hours a day. I had no quality of life because I was just focused on my health all the time, just trying to stay alive, and breathe.”
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After evaluating her options and her quality of life—and the future she envisioned with her boyfriend, Brent—she eventually decided to once again look into receiving a lung transplant.
“It was hard, but I was thinking to myself, I’m madly and deeply in love with this guy, but if I want a future with him, something’s got to change, because this is tough,” Strube-Bohaty says of Brent, who proposed to her in June 2015. “If not, I’m not going to have much time left on this earth. I knew that if I wanted to have a future with him, I had to take this leap of faith.”
Strube-Bohaty went to live with her parents in Dallas, near the University of Texas Southwestern Medical Center, and awaited a call from the hospital announced that a pair of donor’s lungs were available. The news finally came in April 2016.
“It was years and years before I was able to take the last deep healthy breath without going into a huge coughing attack,” Strube-Bohaty says of the successful surgery. “For so long I was trying to just imagine the beautifulness of just a deep breath that most people take advantage of. Every single day you’re living and breathing, people don’t realize how easy breath is unless you’ve struggled for so long to breathe.”
About a year after her operation, in a ceremony held in the North Georgia Mountains, Strube-Bohaty walked down the aisle to wed her longtime sweetheart.
“It was a fairytale. I think everyone was touched by how special of a day it really was. It was more than just celebrating love, it was celebrating life,” she says of her wedding day on March 18, 2017. “I just felt like such a princess. I really did. Everyone spoiled me so much and we’d been taking dance lessons and I felt like Belle in Beauty and the Beast.”
The day was all made possible by her lung donor, who gave her the chance to make her dreams come true.
“It was just magical in every single way and I could just feel my donor’s presence,” she says. “I could just feel so much spirit around me and just happiness. It was just a magical day on all levels.”