Michael Anstead at the University of Kentucky, Katie's pulmonologist since she was a little girl, had lectured her many times that face-to-face meetings with other CF patients were a bad idea.
In their online conversations, one of the first things Dalton told Katie about himself was that he had Burkholderia cepacia , a horribly dangerous infection for people with CF.
She asked Dalton to come visit her in Flemingsburg, Kentucky. So on August 28, , Dalton drove more than six hours from St. Later the young couple drove around Flemingsburg, and Dalton gave her a necklace for her nineteenth birthday, which was two days before.
Their health quickly deteriorated, and within months, the new husband and wife went on oxygen full time. Too ill to work, Dalton quit his job at his family's auto repair shop, and Katie quit hers as a store clerk.
In August, , the couple entered the University of Pittsburgh Medical Center together to wait for new lungs. Dalton's came first, and on November 17, he had his transplant. Despite his Burkholderia cepacia, which makes transplants more complicated, it was a success. I was so happy for him," Katie says. The month after Dalton's surgery, UPMC discharged Katie -- she says they told her it would be psychologically good for her to get out for a while.
When she had serious trouble breathing three days later she tried to get back into the hospital, but UPMC informed her she'd used up her supply of Medicare days and wouldn't accept her. Medicare -- the federal insurance program for the elderly and for anyone with disabilities -- wouldn't pay for another hospitalization until Katie had been out of the hospital for sixty days.
But Katie was too sick to stay out of the hospital for six days, much less sixty. So Katie relied on Medicaid, public insurance that was supplied by her home state of Kentucky.
She was admitted to the University of Kentucky Hospital, where she was cared for by Anstead, her beloved pulmonologist.
But then, another hurdle. Anstead explained that most lung transplant centers, including the two in Kentucky, don't do transplants on patients with Burkholderia cepacia, referring them to larger centers like UPMC that have more experience with such complicated cases.
Katie and Dalton, now 24 and 23, were desperate. Her doctors predicted she wouldn't live a year without new lungs. Katie Prager, in her current condition. Going on her husband's private insurance wasn't an option, since Dalton is on his father's policy. In February, Anstead wrote a letter to Medicaid, pleading with them to make an exception and pay for Katie's care at UPMC, even though it was out of state.
Kentucky Medicaid denied his plea, and that's when the squabbling began. While UPMC spokeswoman Wendy Zellner didn't elaborate, a hospital might be loathe to sign up for large-scale coverage of out-of-state Medicaid patients as payments under such programs are typically very low.
Asking for hundreds of doctors to sign up to take Kentucky Medicaid is "an unusually restrictive approach and contrary to single-case agreements that we have signed with other state Medicaid programs," Zellner wrote. It is up to Kentucky Medicaid to address this situation. Nobody should have to do that.
As a result of inquiries from CNN, on Wednesday Aaron Albright, the director of the media relations group at the Centers for Medicare and Medicaid Services arranged for a caseworker to call Katie at the hospital. But it didn't go very well. Katie says the caller, who identified herself as Pat Pierorazio, was "rude, mean, and angry.
Katie says the Medicare representative told her she would look into her situation. CMS is reaching out to the state agency to find a solution as soon as possible.
Skyping with Dalton helps, and raising money on their Facebook page keeps her mind busy. And she's always thinking about their "after transplant bucket list," which they keep in a safe in their house so it won't be destroyed by fire or flood.
Drive through every state. Learn another language and visit a country where they speak it. Write a book together about their love story. They have simpler dreams as well.
Like going grocery shopping together, or sitting side by side on the couch to watch television. And this is their biggest goal: That's all I really want -- to be able to hug my husband on our fourth anniversary," she says. Wednesday afternoon, there were signs of hope.
So stay tuned," she wrote. Katie and Dalton were glad to hear it.