Katie Prager used to imagine that she and her husband, Dalton, could live together into old age, happy and healthy.
Now both are struggling with serious health problems, and Katie Prager is in Hospice care, counting down what she wants to experience — Christmas in September, a swim at the pool — before she dies.
She turned 26 in August.
Prager, of Flemingsburg, was born with cystic fibrosis. In 2011, she married a fellow cystic fibrosis patient, Dalton Prager, whom she had met on Facebook. He received a lung transplant, but Katie’s insurance difficulties left her in suspension until the University of Pittsburgh got an exemption to help her.
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She received national attention because she had cystic fibrosis with a Burkholderia cepacia infection, which limited the number of surgery centers specializing in her condition. Her insurance, a combination of Medicare and Medicaid, considered the University of Pittsburgh Medical Center out of network. The Herald-Leader wrote about her at that time.
Eventually, the Pittsburgh center received a limited permit to take her case. She received new lungs in July 2015.
Her mother, Debra Donovan, said after the transplant that her daughter “looks really well. ... She just looks beautiful.”
And then things just seemed to fall apart.
“Everything that could go wrong has gone wrong,” Katie Prager said Thursday in a telephone interview, while undergoing dialysis in Maysville because she has kidney failure.
She has cancer in her lungs related to the transplant, she said. Her heart is malfunctioning, causing fluid to fill up her lungs.
She remains hopeful, but she has eliminated all drugs and lifesaving measures except dialysis. Hospice care began Sept. 2.
Prager is forgoing blood transfusions, antibiotics and intubation. And she said she is done with hospitals: “I just want to pass natural.”
Instead, she is concentrating on getting to enjoy a few life experiences one last time. Her family will gather next week to celebrate Christmas with her, complete with holiday trees, an ornament exchange and snow-making machines. Also next week, a group of nurses will take her swimming at the Maysville YMCA. Spending so much time in the hospital, she has missed the water.
An online fundraising campaign is buying her husband a plane ticket to come from St. Louis to visit her when he is well enough to do so. Dalton Prager has battled pneumonia and has been on a ventilator after his recovery from a lung transplant, which happened months before Katie’s, also ran into difficulties.
Katie Prager would like to see her husband at least for a few minutes. Obviously, things are not going to end up as they’d hoped, but she thinks of him often.
Meanwhile, she has started a crowdfunding campaign to pay for her “celebration of life” after she’s gone.
“I just want everybody to have fun and not worry,” Prager said. “I just want to have enough money that my parents don’t have to worry after I’m gone.”