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HEALTH
Bellingham woman fights pulmonary fibrosis
Lung disease is a little known but deadly killer
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Kristie McClellan has a disease that claims 40,000 lives every
year — the same number as breast cancer.
But you’ve probably never heard of it.
In July, doctors told the 57-year-old Bellingham woman that she
had idiopathic pulmonary fibrosis. They meant that her lungs
were turning into scar tissue, and it would eventually kill her.
She and husband Jerry McClellan were bewildered by the
diagnosis.
“We’d never heard of it before,” she says.
They weren’t alone. They started asking everyone in their circle
of friends, acquaintances and customers at their Bellingham
business, Hardware Sales, about the disease.
Did they know anyone who had it? Had they ever heard of it?
They got sympathetic, blank looks in return.
Wracked with fear and sorrow, Jerry placed a classified ad in
the newspaper, an open plea for people to start a support group
with him. He got a single response, from a woman whose husband
had died of the disease 2½ months after being diagnosed.
They felt alone with their death sentence.
“Am I the only person out there? There have to be other people,
if it’s as common as they say,” Jerry says.
“Confusing disease”
Idiopathic pulmonary fibrosis is an unexplained hardening of the
air sacs in the lungs into scar tissue. This prevents the lungs
from getting oxygen into the blood stream and makes breathing
difficult until, eventually, it becomes impossible.
The Chicago-based Pulmonary Fibrosis Foundation says that at
least 200,000 Americans have the disease; 40,000 die each year.
Two-thirds die in five years.
There are more than 200 interstitial lung disorders, which cause
damage and swelling in the tissue between air sacs in the lungs.
Some cases of pulmonary fibrosis can be linked to exposure to
occupational hazards like asbestos or metal dust. But the cause
of other cases, like Kristie’s, are a mystery.
It’s believed that the condition, often misdiagnosed as
emphysema, asthma or pneumonia, is largely unknown to those who
don’t suffer from it.
Abigail McGlothlen, communications director for the foundation,
says that it’s a messy, confusing disease that affects mostly
middle-aged and older people.
“There’s such limited understanding of the disease,” she says.
“Research is still going on to determine the definite causes,
and they haven’t really determined any effective treatments that
seem to work.”
Because the disease is easily misdiagnosed and poorly
understood, support for sufferers tends to fall under a larger
umbrella of lung diseases.
Loving help
The McClellans have been arm-in-arm since they were teens.
Jerry, who has been running his family business Hardware Sales
in Bellingham for more than 25 years, met Kristie first while
they were students at Bellingham High School.
He can’t imagine the golden years of his life without his wife
of 38 years.
“This is like a bad dream,” he says. “It’s this horrible new
thing we’ve never heard of before.”
So it’s natural that Jerry has gone, as his wife describes it,
“overboard” in his efforts to battle her disease.
He’s got a spreadsheet on his computer of all of her treatments:
visits to a naturopath, a machine called the “Energetic Fitness
System” that she swears clears her lungs, and vitamin
supplements. He even called Evel Knievel, who suffers from the
same disease. He got to Knievel’s daughter, who couldn’t tell
him much.
He installed new furnace filters. He gave away his beloved
parrot. He told the preeminent pulmonary fibrosis specialist in
Seattle that he’d camp out in his RV in the parking lot for
weeks for a chance to get off the six-month wait list for an
appointment. “There is nothing I won’t do to keep her on this
Earth,” he says.
Kristie has wracked her brain to pinpoint what could have gotten
into her lungs: the kerosene they’d heat the rec room with? The
dust at Hardware Sales? She’d smoked for years, but plenty of
people who’d never lit a cigarette had the disease as well,
doctors told her. (She quit smoking after her diagnosis.)
Doing all they can
So far, the disease is subtle. When she vacuums, she loses her
breath.
“It feels,” she says, “like a frog in your throat.”
She can’t walk stairs like she used to. She gets sweaty and
loses her breath quickly with a bit of exertion.
The McClellans are focused on creating a support group for
sufferers to connect with others who share their questions and
fears. And Jerry is on a mission to tell the world about the
disease.
He recently bought 200 IPF wristbands that he’s set by the cash
register at Hardware Sales. Funds raised will go to the
foundation for research.
“I need help,” he says.
For now, all Kristie can do is wait, hope and enjoy her life.
She still can baby-sit her 4-year-old granddaughter Brooklyn and
take RV trips to the ocean or Palm Springs, Calif., one of her
favorite places. Two different doctors told Kristie she wouldn’t
live long enough to see Brooklyn’s eighth birthday. One told her
to begin reading a book called “Death and Dying.” Another told
her that if she had anything she wanted to do, she should do it
in the next year.
Kristie is unconvinced.
In a year, she hopes she can write a letter to the doctors who
told her she’d be dead, just to prove they were wrong.
“I’m just going to be around,” she says. “I’m not going
nowhere.”
She doesn’t take the simple act of breathing for granted
anymore. Now she savors the sweet air.
But she has begun writing a daily journal about her hardening
lungs.
Eventually she says, her husband can give it to the Pulmonary
Fibrosis Foundation in Chicago, so someone else won’t feel so
alone.
Reach Michelle Theriault at
michelle.theriault@bellinghamherald.com or 756-2803.
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