WASILLA — “Middle age” has a whole different meaning for people with cystic fibrosis — people like 41-year-old Wasilla resident Dana Doty.
In a downtown Wasilla coffee shop on a sunny Thursday afternoon, Doty appeared perfectly at home. With a knit white cardigan over a coral top, jeans and matching coral flats — plus her staple accessory, coffee, in hand — she looked completely the part of a woman gracefully entering middle age, readying herself for another Alaskan summer.
Except for the occasional cough and an oxygen tube running under her nose to a box on the floor, there was no indication that she has struggled with a chronic illness for the last 20 years of her life.
“Everybody says that,” Doty said, a smile on her face. “Everybody’s asked how I’ve lived so long and I just think a lot of it is about attitude.”
Doty has Cystic Fibrosis, a lung disease with a nefarious reputation of killing people young. According to the Cystic Fibrosis Foundation, the median predicted survival age for people with CF is close to 40. (That’s a vast increase in life expectancy since the 1950s, when a child with CF rarely lived beyond the age of 5 or 6.) Most people are diagnosed by age 2.
Doty tested positive for CF at age 22, she said, after multiple childhood test results to the contrary.
A late bloomer, of sorts
Doty’s frequent battles with bronchitis and pneumonia as a child led her parents to have her tested for CF — a genetic disease which produces similar symptoms — but the tests “always came back negative,” Doty said.
However, when she was diagnosed with pancreatitis at 17, her family had stronger suspicions that something else was going on.
“I didn’t fit the bill for somebody with pancreatitis,” she said. “They’re (usually) either morbidly obese or alcoholics, and I didn’t fit either of those profiles.”
Again she tested negative. She continued to go through life, being hospitalized every so often for some sickness or another, to the point where it just became “whatever.”
She married at 20 after a brief engagement, and was generally happy with her life. But after three years of unsuccessfully trying to get pregnant and have the kids they both desired, Doty and her husband decided it was time, again, to see a doctor.
When the doctor asked if there was any chance Doty had CF, she answered with a confident “no.” Still, to explore the various possibilities, Doty submitted to a blood test.
Several days later, she had her answers.
“I actually found out I had cystic fibrosis and I was pregnant in the exact same week,” she said.
Doty said she was told that the risk of complications during pregnancy were high for people with CF, who typically weren’t able to have children. But Doty had three.
Though she was on bed rest for 17 weeks after having her first child, Alexa, and went through another bout of pancreatitis before birthing her second child, Caleb — who was born with pneumonia — all returned to good health.
When she became pregnant a third time, Doty said doctors encouraged her to terminate the pregnancy, but she decided to take her chances.
That pregnancy, she said, was her healthiest ever.
“Our third child was like a true, unexpected miracle,” Doty said.
Being a parent
Watching her children grow up, Doty tried to be realistic about how long she would be around for them, starting with her daughter.
“I said, OK, if I can just make it until she’s done with kindergarten … and then it was, well, if I can just make it to sixth grade,” she said.
In a few weeks, Doty plans to see her daughter Alexa graduate from high school, and in a few months, begin her undergraduate education in nursing. Caleb, now 16, is an avid outdoorsman, and Seth, 12, has the most tech savvy of the family. Both boys currently attend Joe Redington Sr. Jr./Sr. High School, and Doty hopes she’ll be able to see them graduate as well.
“I never honestly expected to still be here,” she said.
Doty said she’s tried to be as transparent as possible about her condition with her kids, which has instilled in them “a real appreciation for life.” But the children’s knowledge of the disease is little consolation when CF takes its toll on their mother.
“It’s always been in their lives, but that doesn’t mean it’s easy. It’s hard,” she said.
This past year was especially difficult, Doty said, as she was hospitalized essentially from the end of August to Dec. 2, 2015.
“With three kids, a husband and two dogs, life gets pretty rough,” she said.
Running for a cure
In addition to the support she has from her immediate family, Doty said she’s felt as much love from her church family in her struggles with CF. Recently, one friend and fellow churchgoer in particular decided to do something special for her — race the Lost Lake Run.
Patti Burroughs, who also coached track and cross country at Wasilla Lake Christian School for years, said she knew how difficult Doty’s fall hospital stay had been, and felt called to sign up for the 15.75-mile Seward-area race.
“I thought about doing it (the race) a couple years ago, but I’m not a mountain runner — I just go out and jog for fun,” Burroughs said.
The Lost Lake Run raises money for the Cystic Fibrosis Foundation, so when Burroughs’ brother-in-law, Paul Ostrander, asked her if she wanted to be on a team with him for the race, she said yes. Her race, she said, would be dedicated to Doty.
“She doesn’t let anything get her down and she’s just a great person,” Burroughs said.
Burroughs is one of 16 members on the Peninsula Beer Runners team, organized by Doug Hogue. Each runner on the team has been tasked with raising at least $312.
Burroughs said her decision to run and raise money is as much about supporting the CF Foundation as spreading awareness about the disease and whom it affects now.
“It’s great to see stories out there about kids but there are adults that struggle with that, too,” she said.
Doty said she would love to run herself if she could, and was warmed by Burroughs’s pledge to run for her.
“It’s so special that someone who can do that will do it for you,” Doty said.
She also said she strongly supported the CF Foundation in its mission and research, which she said has had a direct effect on her life.
“Since I’ve had it (CF), they have come out with three medications that have totally turned my life around,” and that’s because of the foundation’s research, Doty said.
Those who wish to donate to the Cystic Fibrosis Foundation through Burroughs and her team can make checks out to Lost Lake Run with Peninsula Beer Runners specified in the memo. Team members will collect donations and submit them to race officials before the start of the race on Saturday, Aug. 27.
Contact reporter Caitlin Skvorc at 352-2266 or firstname.lastname@example.org.