Boyle, who helped start the adult program at Johns Hopkins in 1999, has a handful of patients who are older than Sackett. But he rarely sees a person with Delta F508 mutations make it to 58. “It turns out the severity of lung disease is about half determined by genes and another half by how good patients are with their medicines, how dedicated they are to their routine,” he says. “We always ask, ‘How often do you miss your medicines?’ as a way to assess, because it’s a very complicated regimen—it takes many patients two to three hours a day. …John’s one of the few patients who says with complete honesty: ‘I never miss them.’ ”
He never misses a morning run, either. Sackett started running with a friend when he was a freshman in college in 1976. He’d played flag football and other sports, and his doctor said exercise was good for him as long as he didn’t allow himself to lose weight. When he ran, he noticed how hard he coughed and how much better that made him feel later, so he kept doing it. “I used to be able to run without stopping—I can’t do that anymore,” he says. He runs in rain and freezing temperatures. “I tell myself it’s not a habit unless I do it every day.”
Sackett doesn’t listen to music when he runs—he says the earphones would pop out of his ears when he coughs. Instead, he prays, and thinks. In January, he found himself thinking about the holiday party for Shady Grove staff, and how there should have been festive decorations in the room so the evening felt more special for employees. “It dawned on me: That wasn’t world-class,” Sackett says. “I get that on my run.”
AS A TEENAGER, Sackett felt like he had a secret life at home, all these enzymes and breathing treatments he couldn’t survive without. He was tired and run-down. He put all the energy he had into classes, the choir and his role as student body president. He coughed more as he got older. His mother saw him becoming angry and resentful, as if all of a sudden he was accepting his illness, realizing just how difficult his life was. “By the time I got home, I didn’t have anything else to give,” Sackett says. “I took it out on my family.”
He decided he wasn’t going to date—his life was too complicated—but when he got to Walla Walla University, a Seventh-day Adventist college in Washington state, he fell for someone. One day, his girlfriend asked what would happen if they got married and started a family. Would their kids have CF? “I don’t know,” he said. “I’ll find out.”
Sackett didn’t have a doctor who handled adult cases of CF so he went to his pediatrician, who told him that 98 percent of men with CF can’t have children. “I’m sorry we never talked to you about this,” the doctor said. Nowadays, a growing number of men with CF are fathering children through enhanced in vitro fertilization techniques, but that wasn’t an option then.
“That was pretty hard for me to take,” Sackett says. “It made me think: OK, what is my purpose in life again? There’s no extension of my life. This is it.”
He and his girlfriend eventually broke up, and he found himself wondering when he should tell a woman he dates that he can’t have his own children. “What are the ethics around that? Do you wait till they’re in love with you?” Sackett says. He realized it wasn’t fair to keep it a secret, just like it wasn’t fair to hide anything about his illness. “I ultimately decided I’m gonna make it common knowledge.”
He had just moved to Boulder, Colorado, after getting a master’s degree in hospital administration from Loma Linda University in California, when he met his future wife, Sue, on a blind date. She thought he was smart and handsome, always up for doing something fun, like skiing and golfing. He wasn’t the first person she’d met with CF—she had a friend in college who had the disease and became a pediatrician.
“I had been in nursing school, so I knew what there was to know about it at the time,” says Sue. “Thirty-ish was the life expectancy. When I met him, he was 26.” They’d been dating for eight months when Sackett decided to write a letter to Sue’s father. In it, Sackett said he was in love with Sue, and he talked about his disease and what it meant for his life. He brought the letter to Sue’s father and handed it to him. “You need to read this,” Sackett said, “because I want to ask your daughter to marry me.”
IN SACKETT’S KITCHEN, there’s a drawer filled with supplies for IV antibiotics, including tiny bottles of sterile water that he mixes with a powered medicine. He keeps his CF medications—he takes about 10 pills a day—in a separate cabinet. “It’s really gonna piss me off if I die of cancer,” he often says. When he’s sick and needs to go on an IV, he typically hires a home-care nurse to change the dressing; he doesn’t want Sue to be his caregiver. She watches out for him, though, reminding him that he has to eat something even when he doesn’t want to, giving him split pea soup when he’s ill. She’ll tell him if his breathing sounds labored while he’s sleeping, or if she thinks he needs to go to the doctor, something he tries to avoid.
“There’s times of worry, like when he has an exacerbation and he’s really ill, but for the most part I think probably it’s a compartmentalization,” Sue says. “I wouldn’t be able to deal with it if I worried about it all the time.”
Sackett and his wife, who’ve been married for 30 years, always wanted children and decided to use a sperm bank—Sackett laughs when people say his son or daughter look just like him. Before he had kids, he thought that not being a biological father might become a barrier to love, he says, but he was wrong: “I couldn’t love my children more—it’s not possible.”
The kids found out at an early age that their dad was sick because they heard him coughing all the time. When Sackett had to be hospitalized for an infection four months after his sister died, his children, then 3 and 6, came to visit him. They’ve always known he might not live as long as other dads, Sue says.
“I can remember when Greg was in first grade, I thought to myself, I’d really love it if I could be there for his college graduation. He’s not helping me out—he’s in his sixth year of college,” Sackett says with a laugh.
When the children were in elementary school, one of Sackett’s colleagues at Avista nominated him to carry the 2002 Winter Olympics torch as it passed through Boulder on its way to Salt Lake City—he still keeps the torch in his office—and the kids brought their classmates to cheer him on.
“I might as well have been a superhero that day,” Sackett says. “They didn’t really know what I did, but that’s the day I arrived in the eyes of my kids, for sure.”
Sackett knows from growing up with CF that it affects a whole family. His parents divorced when he was in his late 20s. “A very high percentage of parents who have children that they think are terminal divorce,” he says, “because if they share their biggest fears, it causes their spouse pain.”
His own children have witnessed some scary moments, times when he was struggling to breathe or so frail that he could barely make it up the stairs. He used to visit children who have CF and tell them what his mom told him—that everybody has something, and just because they’re sick doesn’t mean they shouldn’t work hard. “You can still make a difference,” he would tell the children he met. “Find your niche. Live beyond this.”
Eventually, Sackett had to stop his visits because of new recommendations that CF patients shouldn’t come in close contact with one another. One might make the other sicker. Since then, he’s spoken to parents about coping and not losing hope. “They can live a great life,” he’ll say about their children. “Find the best doctor and do whatever the doctor says.”