August Murphy makes her way briskly down a hallway at Maine Medical Center. She’s wearing a white T-shirt, black sweatpants, pink sneakers and a mask over her nose and mouth. A portable oxygen tank trails behind her.
She’s headed for a small room on the fourth floor where she’ll spend the next 30 minutes speed walking on a treadmill. Murphy is hospitalized, but as far as she’s concerned that’s no reason to stop working out.
run for lungs 5k
WHEN: 9 a.m. Sunday
WHERE: Back Cove Trail, Portland
ENTRY FEE: $15
SIGN UP: eventbrite.com/e/5k-run-for-lungs
Donations welcome
“I don’t want to lose my momentum,” she says, laughing.
For the past year, she’s been training to walk the first two miles and run the last mile of this weekend’s Run for Lungs 5K, a race she organized to raise money for her own double lung transplant.
“At this point it’s not if that (transplant) needs to happen,” she says. “It’s just when.”
Murphy, who’s 35 and lives in Yarmouth, has cystic fibrosis, a genetic disease of the body’s mucus glands that causes persistent lung infections and progressively limits the ability to breathe. It’s the second most common inherited disorder occurring in childhood in the United States behind sickle cell anemia, according to the American Lung Association. About 30,000 Americans, including 300 Mainers, have cystic fibrosis.
Patients generally do well after lung transplants, and it would definitely be expected to improve Murphy’s breathing, according to the Cystic Fibrosis Foundation.
While strides have been made in treatment, there’s still no cure. Thirty years ago, most people with cystic fibrosis didn’t live beyond age 25.
“The average life span now is about 40,” says Jonathan Zuckerman, the director of the adult cystic fibrosis program at Maine Medical Center, “and we’re making progress every day. And we have patients like August who are out and working hard every day to keep their fitness up. But it’s a challenge.”
Murphy’s latest hospitalization happened after a string of stifling hot days left her gasping for breath.
“I felt like I was suffocating, couldn’t catch my breath. Couldn’t do stairs without feeling like I was going to pass out. It scared me.”
But not enough to halt her almost daily workouts, once she was admitted to the hospital. There’s a lot riding on this run around Back Cove and on Murphy’s other fundraising efforts.
While insurance usually covers the cost of the actual transplant, potential lung recipients are urged to raise money for out-of-pocket expenses, including co-pays and some out-patient care as well as transportation and lodging costs. Maine Medical Center, which has the only organ transplant program in the state, doesn’t do lung transplants, so patients must travel to out-of-state transplant centers and stay in the area, often for extended periods of time. Murphy’s goal is to raise $200,000.
“That’s why I’m doing it now and not waiting until it becomes urgent. Because that’s a lot of money.”
Since last fall, she’s been focused on building her strength and stamina, hoping her participation in the Run for Lungs will inspire others to join her. So far, 30 people have signed up.
Brian Ligotti, a sports performance coach who met Murphy at last year’s run, has been helping her get in shape. He’s teaching her how to breathe more rhythmically and thus more efficiently. But that doesn’t change the fact that when she exercises, every breath she takes is an effort.
“For the average person it’s the equivalent of going from sitting on the couch to running a marathon,” Ligotti says. “Just watching her progress has been pretty amazing, how determined she is despite setbacks like being in the hospital.”
When Murphy describes what it feels like, you quickly get the picture: “If you were to put a clothespin on your nose and a straw in your mouth and then run a mile, that’s what it feels like to me.”
Her determination to take part in the race doesn’t surprise her parents, who decided early on that they weren’t going to let the disease define their daughter.
“We never made a big deal out of the fact that she had CF,” says her father, Dean. “We never said, ‘Oh, my God, you can’t do that or you can’t go there.’ We didn’t put limits on her.”
That attitude stuck.
“I’m a better person for (having the disease) because I’ve gotten to see what people take for granted,” she says. “I am not the person that sits and (says) woe is me. Like, what I don’t have and what I can’t do. It’s what I can do.”
After graduating from Falmouth High School, she attended cosmetology school and moved to Florida when she was 25. She wasn’t there long before she got sick.
“She got an infection and then two more infections, and it was more than she could handle,” her father says. “They had to induce a coma to put her on a respirator and they said she’d never come off it. Four weeks later, she opened her eyes.”
That, says her dad, is pure August.
“She has an incredible will to live.”
And a strong desire to inspire others.
“Nobody knows when their end is,” she says. “Yes, medically, my life will be shortened. But if I can … motivate somebody to be the happiest, healthiest person they can be, then, if I only have five more years, it’s worth it.”
On the treadmill, she slows down to check the distance she’s walked.
“One point six (miles). Yay!” she says, her smile a mile wide.
Bring on the Run for Lungs, Murphy says. She’s ready.
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