We Alaskans

The run of a lifetime

Sabrina Walker crouched inside her garage door, strapping her son into a jogging stroller and tightening the laces of her studded shoes, preparing to run for her life.

She made her way through her Anchorage neighborhood, her feet ticking along the surface of icy streets toward the Tony Knowles Coastal Trail. It's in moments like these that she takes a sort of personal inventory of how her body feels; it's been through so much already. Lately she feels good, at least by the standards of someone living with cystic fibrosis, working hard to breathe and trying to stave off an infection flare-up that can lay her flat.

Sabrina, 29, runs for a chance to defy expectations, pushing her son in front of her and carrying her hopes to outlive a time when there is no cure for her disease, a time that can't end too soon. And she'll run until she can't run anymore.

"I can't take days off," she said. "It's different for me. I'm doing this to save my life and save my health, and so there really are no excuses."

Despite her commitment to vigorous workouts, which also include boot camp-style classes and weight training, she says she's actually pretty mellow.

"I don't mind sitting still and relaxing and watching TV. I just think my health is more important than just sitting around on a Saturday morning," she said.

At last check, her lung function was 83 percent — a number that has held steady since fall. Though Sabrina's challenges are invisible, she's not hiding them. In fact, Sabrina has made it a point to talk about her cystic fibrosis.

Cystic fibrosis, or CF, is a genetic disorder that affects the lungs and several other organs. It causes a thickening of secretions, especially mucus in the airway. It leaves affected people coping with inflammation in the lungs, infection flare-ups and complicated daily treatments. CF also is linked to diabetes, high blood pressure, infertility and digestive problems that can lead to malnutrition. CF affects 30,000 people in the United States, according to the Cystic Fibrosis Foundation.

Severity varies, but there is no cure. Pulmonary problems brought on CF-related infections and inflammation is the cause of death in 90 percent of people with the disease, according to the Cleveland Clinic.

But it's also true that people with CF are living longer than ever before as treatments evolve and improve. Dr. Dion Roberts, a pediatric pulmonologist who directs the Cystic Fibrosis Clinic at Providence Alaska Medical Center, said that when he graduated from medical school in the mid-1960s, people with CF often died in adolescence. Now, life expectancy is in the late 30s. Of course, that's a statistic that only accounts for people who have died already, not all of whom benefited from modern treatment strategies, Roberts points out.

At her home in the Turnagain neighborhood, Sabrina manages a complex regimen of medicine that includes several inhaled antibiotics and 25 pills with enzymes and nutritional supplements every day. Diagnosed at age 4, she remembers enzyme pills being emptied into her applesauce to make them easier to ingest as a child.

Daily, sometimes twice daily, she straps on a vest that inflates like a giant blood pressure cuff, tightly squeezing the torso of her petite body. Attached to a machine by a hose, the black nylon-and-Velcro vest shakes her vigorously for 20 minutes per session to help clear her lungs. Anyone trying it for the first time would find it a struggle to breathe normally, much less inhale nebulized medicine, which Sabrina does simultaneously.

Sabrina said running does the work of clearing her lungs as well or better than the vest, she said. Additionally, running gives her a fitness level that no passive machine can provide. Sabrina is confident she's making a difference, allowing her some measure of control over CF.

"That's why I like running and exercise, because I'm being an advocate and being proactive towards my health. It's something that I can do," she said. "In a way, it's made me a fighter."

Folks at Figarelle's Fitness, a gym in Midtown, have noticed, said instructor and owner Steph Figarelle. Sabrina attends boot camp-style workouts there each week.

"It serves as a reminder to people to live life to its fullest," Figarelle said. "It sounds cliche. We hear it all the time. But when you see a person living with this disease that could shorten her lifespan, it inspires people. They're like, 'Man, you're right. I don't have an excuse.'"

Last year, with Sabrina in mind, members of Figarelle's Fitness raised more than $14,000 for cystic fibrosis research in just one day.

Sabrina's way

Scheduling around her part-time work as an administrative assistant in UAA's Alaska Native Studies program, Sabrina runs three times by herself, up to 7 miles each time, most weeks. She also joined a training group at The Dome, an indoor sports center, for a track workout once a week. That's all in addition to her weekly boot camp class and a weight training session. She steps it up before races — 5-Ks, half-marathons and trail runs — of which she does many. She did nine races in 2015.

The Lost Lake Run held each August is the event closest to her heart, since she actually has the disease that the race has been raising money to fight since 1992. The race, in its 25th year, has raised about $1.68 million so far, according to race director Patrick Simpson. Sabrina has completed the 15.75-mile mountain race four times.

Her lifestyle is one she built largely without the benefit of a role model, at least one who juggles the same treatment needs, responsibilities and interests. In fact, Sabrina spent a good deal of her life not knowing anyone else with CF. Because people who have the disease are susceptible to bacteria that others with CF may carry, close proximity to each other is risky. In recent years, social media has opened up lines of communication. She takes advantage of that, but it's a mixed blessing. Inspiring anecdotes are woven with hard-to-read stories shared by people with lung function percentages in the teens and awaiting lung transplants.

"It can be sad, because I've made some friends online and they've passed away," she said.

Good stories or bad, they're all reasons to get out the door and be active each day, she said.

Dr. Roberts, at Providence, doesn't treat Sabrina, but he does treat more than 50 people with CF. He said there are a couple of reasons he encourages his patients to think the way she does about physical activity. First, he appeals to simple logic.

"If you're an elite athlete, and you're trying to get that extra two-hundredths of a second off your time, fitness is important," he said. "And if it's important for somebody who's already at that level, it has to be exceedingly important to somebody that's sick and doesn't have much to work with."

For people with CF, exercise increases pulmonary function, can reduce inflammation in the lungs and lessen debilitating symptoms of infection, Roberts said. Studies have shown exercise can compound the benefits of existing treatments, he said, though in general Roberts is careful not to advise it as a replacement.

Whether an athletic lifestyle results in a longer life for CF patients is hard to pinpoint. Roberts said it would require decades to undertake a complicated study.

A different normal

At home, Sabrina's husband helps her make the time to work out. Adam Walker, an Anchorage dentist and son of Alaska Gov. Bill Walker, is a fitness enthusiast in his own right, but doesn't claim to be much of a runner. Still, he gladly participates when his wife lets him know what races she's signed him up to run. He wonders if Sabrina's athletic ability is due to mild CF, or whether her CF is mild due to her conscientious physical conditioning.

"It's incredible for someone with a normal lung capacity, but for someone with CF, with a very diminished lung capacity compared to a normal person, it's unbelievable," Adam said.

They first met as high school students in the same Anchorage neighborhood where they live today. Adam, now 30, remembers getting razzed by his friends for taking an interest a girl two grades his junior, though she was only 11 months younger in age.

"I remember one day when we were talking on the phone, I kind of asked her about it. I was like, 'I've heard this rumor …' and she just knew exactly what I was talking about. She was like 'That I'm dying, right?" Adam said.

Even back then, Sabrina saw that her physical activity could change perceptions.

"Once I got into high school, I did cross-country running and I did track and field, I think people quickly realized that I'm a person and I'm active and I'm going to participate," she said.

If that was one life strategy learned young, surviving cancer proved to be another. Sabrina was diagnosed with non-Hodgkin lymphoma after high school, scuttling her plans for college in California. She began her adult life with four months of aggressive chemotherapy and a month of radiation, and carried a pump at her side that administered intravenous antibiotics as doctors treated both diseases at once.

"I named it Gary," she said.

Sabrina remembers fretting the baldness. Though she says that seems silly now, medical challenges have battered her self-esteem much of her life. Whatever the long odds of one person being receiving both a cystic fibrosis and a cancer diagnosis before age 20, there's an upside that matters now.

"If I'm having a bad day, I can just say I've been through worse and overcome worse. So I can overcome this today."

Sabrina's been cancer-free for 10 years.

In 2014, Sabrina and Adam decided to try for a baby, an option not available to everyone with CF. After genetic testing showed a low chance that Adam was a carrier of the CF gene mutation — meaning chances were slim that their child would also have CF — Sabrina faced a high-risk pregnancy. Her lung function dropped to 67 percent and she struggled to control her blood sugar as she neared full term. But she managed well, and Leo was born healthy in March.

"I continued to be active and worked out up until two days before he was born," she said.

In January, Leo braced himself in a standing position by holding on his mom's treatment machines, which were surrounded by his toys.

Each new day

Though Sabrina has been hospitalized with CF-related problems just three times in the last decade, she was reminded of the delicate nature of her health last summer. Her lungs felt heavy, she said. Then came the tickle in her throat that wouldn't go away. Before long, her stomach muscles ached from the coughing, and her husband urged her to make the call to get checked out.

Sabrina spent a couple of nights in the hospital, undergoing a "tune-up," as she calls it, to tamp down her lung infection and overcome pneumonia. Lying there, she couldn't help but wonder how long she can keep up her active lifestyle, she said.

She checked out of the hospital with an intravenous pump for antibiotics. Gary was back again. She stuffed it in her CamelBak hydration pack when she returned to daily workouts, ran a 10-kilometer race and climbed Flattop during her recovery, a thin tube running over her shoulder and into her arm.

So far in 2016, things are good. She's more likely to think about her 2-mile time trial splits after a workout then the statistics for people with CF. And while the odds are not in her favor to make it to age 90, she said she can give it a shot.

"When I was diagnosed, they said that I wouldn't make it to the age of 8 and I passed that," she said. "In my mind I know I'll make it past my 30s. I know I'll make it into my 40s."

Roberts points to several important advancements that have happened over the course of his career in treating people with CF. Today, there are protocols to eradicate, or at least delay the effects of pseudomonas aeruginosa, a major illness-causing bacteria affecting people with CF. Doing that involves newborn screenings for the disease, a practice that became widespread less than 10 years ago.

Another big step forward came less than five years ago. A drug called Ivacaftor has added years to the lives of patients with a certain mutation of the disease, though only about 6 percent of people with CF have that form. Sabrina is not among them.

"But for that 6 percent, it's a big deal," he said.

That success has fed momentum for new drug treatments, so much so that Roberts said it can be difficult to find enough qualified volunteers for clinical trials.

"I'm hopeful that a cure will be found in my lifetime," Sabrina said. "And that's another thing that drives me, that if I can maintain my health for as long as possible, I can hopefully be around to see the cure."

Motivated by her desire to watch her son grow up, she said she has plenty to appreciate right now, and has an opportunity to teach him determination and positivity.

Standing outside her home after a 44-minute winter run that began in the dark — a run in which she passed just one other person on the Coastal Trail — Sabrina coughed and described a perspective that was, in part, shaped by her disease.

"I am a lucky person because I can get up every morning and just see value in opening my eyes, and breathing, and feeling love, and feeling compassion, and emotions. This life is precious. We all have bad days … but at the end of the day, we're alive. I feel lucky because I get to experience this journey."

"I'm here," she said.