After the transplant, she had to focus on her recovery, which meant no traveling and limited work. Piper left her job and is now on disability. After years chasing college ?degrees and career opportunities, perhaps the two four-inch scars on her chest would make her consider her future.
But she hasn’t slowed down. Even with frequent hospitalizations and concerns that her body could still reject her new lungs, Piper fills her schedule with events in New York, where she’s earned myriad awards and helped raise millions of dollars for CF research. She’s considering getting another college degree and perhaps finding a job in the not-for-profit world. “I’m trying to figure out what I want to do with my life,” she says. “Sitting around never appealed to me.”
And she continues to write.
… if everything goes smoothly
or at least (almost) according to plan, I am looking forward to maybe casting off this (almost) never-?ending cycle of IVs and looking ahead to the next phase of this (almost) unbelievable experience of learning to live with (almost) perfect lungs in an (almost) never boring CF-meets-transplant-meets-Piper kind of life. And I think I’m (almost) ready.
Libby pulls two vests, a plug-in air pump, three clear vials of prescription liquids and three plastic nebulizer tubes out of a wooden cabinet in her dining room. The 27-year-old unfurls one of the vests, straps it around her lower chest and hooks it to the pump, which has a long, white tube at one end. She hits the power button, and her whole body shakes.
“The first time Will saw this, I was worried he’d freak out,” Libby says, her voice vibrating. “You know, because it’s kind of strange.”
“It was a little weird at first,” Will admits, sliding into a chair next to his wife. “But you get used to it pretty fast.”
“He’s always been so great about this,” she smiles.
Will brushes his wife’s arm with his hand. “It’s part of who we are.”
Libby breaks open one plastic vial and then another 15 minutes later. She takes off the vest and straps on another one, this time around her upper chest. She shakes again.
Will pulls out their wedding album.
“Oh, see that photo?” Libby coos. She points at a picture of the smiling couple, each on opposite sides of a door frame. “I love that picture.”
It’s been a difficult 12 months for Libby. Both she and Sam have been hospitalized twice, including a two-week stay for Libby this past winter when she developed a respiratory infection. The emergencies have pulled her from her job as a pediatric speech-language pathologist. “Sometimes, when you struggle, it puts everything into perspective,” she says. “Things can get rough, but I can’t imagine being happier than I am now.”
Sure, there’s always a shadow behind her — Libby wouldn’t be the same person without it. Her disease doesn’t have to control her, she says, but she does have to accept it.
After she and Sam returned from their trek in Nepal, the two got to work planning another trip. Their doctor asked if they were headed to the moon. “The thing about CF is that you learn to do things right now,” Will says. “It’s a nice way of living.”
So there will be more. More trips together. More time together. More anniversaries and birthdays to celebrate together. Libby is sure of that.
She takes the nebulizer out of her mouth. “It’s the little things that wind up being so big,” she says. “And I have some amazing people to share my life with.” With that, Libby puts the nebulizer back between her teeth. A cloud of white mist curls around her smiling lips.