Katelyn Strube-Bohaty remembers when her doctor first mentioned a double lung transplant.
She would probably have only a year to live without the transplant, she was told.
It was four years later before she decided to go ahead with the transplant. What drove her to the decision was a desire for a “fairytale wedding” and a life with her fiancé, she said.
Now, she’s had the wedding of her dreams and has health better than she could have imagined.
Diagnosed with cystic fibrosis at 3 months old, Strube-Bohaty grew up in Claflin, Kansas, and later attended the University of Kansas, where she studied business marketing.
There, she met Brent Bohaty. She also found herself facing the possibility of a double lung transplant after pneumonia took away much of her lung function.
Lung transplants aren’t that common: About 2,000 people receive one each year in the United States (compared to about 18,000 kidney transplants), according to the University of Michigan. The largest barrier to lung transplant is having enough lung donors.
While she initially resisted the idea of a transplant, that changed when Brent proposed to her in June 2015.
Brent always had a way of helping her calm down and look at the positives, Strube-Bohaty said. He even moved in with her and her parents after their engagement to help be a caregiver.
At the time, Strube-Bohaty was spending all day at the doctor hooked up to machines. She couldn’t do school or spend time with friends, she said. She knew she wanted a future with Brent, but didn’t know how much time she had left.
“If we want to have a wedding, a life together, I’m going to have to do this,” Strube-Bohaty said she told her fiancé.
She moved to Dallas with her parents and Brent so she could be listed for new lungs at the University of Texas Southwestern Medical Center.
“It was hard for us all, but especially Katelyn, to wake up every day knowing she was living on limited time but also waiting for a tragedy to happen,” said her sister Mollie Spicer in a news release. “Someone would have to die for Katelyn to get her life-saving gift.”
Strube-Bohaty finally got the call in April 2016.
She was in surgery nearly 11 hours and was discharged 12 days later.
As soon as she was out of surgery, Strube-Bohaty asked her transplant coordinator if she could plan her wedding.
No, she was told, you’d better focus on your lungs and recovery first.
Waiting was difficult, she said. There was a special place in the mountains of northern Georgia that her grandparents had loved, a place that had a little white chapel. She knew that was where she wanted to be married.
Finally, she was allowed to plan her wedding.
It’s been two years since Strube-Bohaty received her new set of lungs, and one year since she married. She’s now living with her husband in Overland Park, where she spends time jogging with her teacup Yorkie and keeping her lungs strong.
Even though she still has to take 60-70 pills a day, she no longer spends long hours in treatment.
“Imagine having an extra five hours of free time now,” she said. “I can sleep in. I don’t have to wake up and spend an hour and a half on a machine.”
She’s also planning to be a mother, something she’s always wanted but at times didn’t think would be possible. She and her husband had nine embryos created, which a good friend plans to carry.
“I have to focus and from the beginning hope for the best and take it day by day,” Strube-Bohaty said. “I never give up on my dreams.”