JIM WITMER
This spring marks six years since Bryan Denniston, 49, of Tipp City was given six months to live. He suffers from pulmonary hypertension and has been on the list for a double lung transplant for about five months now.Patient awaiting lung transplant finds new hobby
Bryan
Denniston exults in ‘sense of freedom’ in motorcycle adventures.
By Mary McCarty,
Staff Writer
9:32 PM Saturday, May 5, 2012
Dr.
Marie Budev has seen hundreds of patients in her work as medical director of
the Cleveland Clinic’s lung transplant program, but she has never seen anyone
quite like Bryan Denniston of Tipp City.
Nobody
else on the lung transplant list is in the habit of strapping 22 bottles of
oxygen on three motorcycles and taking off for parts unknown on his 1992 Honda
Goldwing 1500.
Denniston
is the “Where’s Waldo?” of the more than 100 patients on the lung transplant
list, checking in with his doctors and nurses from far-flung regions.
“Where
are you?” the pharmacist asked when Denniston, 49, called in recently for a
prescription.
“Key
West,” he replied, having made the 1,063-mile trek in two days.
“On the
bike there’s such a sense of freedom,” Denniston said. “I might live longer if
I stayed here all day, waiting for the phone call that a donor had been found,
but this has opened a whole new world for me.”
Budev
said she has known other patients for whom “every day and every moment is
special, who live with relish, but no one has done what he does.”
Not
that Budev doesn’t have trepidations. Denniston’s life-saving medication, a
sodium saline solution known as Flolan, must be kept on ice; it is nestled in
25 ice packs which he carefully places on top of his oxygen tanks. If the line
is cut on his Flolan tube, he could be dead in 10 minutes. He never goes
anywhere without a spare.
“Imagine
being that sick and having all these tanks of oxygen, and being out where there
is no one, only sage brush and tumbleweed and maybe coyotes,” Budev said.
It
didn’t occur to Budev to forbid him to go: “He would ignore me because he so
strongly believes in doing this. Try to put yourself in his shoes, and always
being told ‘you can’t do that.’ It’s a constant sort of jail.”
Denniston’s
wife, Cindy, also has more than her share of reservations. She finds it highly
ironic that someone desperately in need of a donor is so often behind the wheel
of what is commonly referred to as a “donorcycle,” even though he is
safety-conscious.
“I
don’t like it,” admitted Cindy, an art teacher at Grafton-Kennedy Elementary
School in the Northridge Local School District. “But when you’re walking as
close to death as Bryan does every day, no one else can make those decisions.
When he’s on that bike he feels that sense of freedom that he can’t feel
anywhere else.”
Cindy
and Bryan were high school sweethearts in the Northridge High School class of
1981, where they were crowned Homecoming king and queen. Both were top athletes
who remained physically fit into their adult lives. Bryan worked out regularly
and didn’t smoke or drink.
It was
a bolt out of the blue when he was diagnosed with end-stage primary pulmonary
hypertension in 2006. “They gave me six months to live, and here I am six years
later,” Denniston said.
He
prayed that he would live long enough to raise daughter Cassie, now 21, and son
Jake, 18.
Now, as
Denniston awaits the call for his transplant, he and Cindy hope for so much
more.
“I
don’t see any reason to feel any other way,” Cindy said. “I remember our coach
at Northridge who told us, ‘Go in thinking you’re a winner, and if you don’t,
don’t play.’ He was supposed to be dead a long time ago.”
Budev
said the couple’s hopes are well-founded; the Cleveland Clinic has a nearly 80
percent five-year survival rate for transplant patients with pulmonary
hypertension.
Despite
the risks, Cindy sees many benefits in these cross-country treks on which her
husband is often accompanied by friends and family members, particularly his
father-in-law, Jim Kelly of Union.
Denniston
had never been on a bike before; now one of his proudest accomplishments is
earning the coveted “Iron butt” award for motorcyclists who ride 1,000 miles in
24 hours.
“I had
always worked in the construction industry, but I couldn’t work any more. But
after my diagnosis, I told myself that I had to find a hobby.”
After
watching the 2007 John Travolta movie “Wild Hogs,” he persuaded Kelly, a
veteran motorcyclist, to travel cross-country with him. “I love the smiles when
I pass by,” he said.
Yet his
life isn’t all joie de vivre; his medical problems bring plenty of uncertainty
and financial stress. Denniston said that his Flolan alone costs his insurance
company $9,000 a month, and that doesn’t include the cost of the 22 medications
he takes daily. His condition has taken a financial toll on the family, costing
them $50,000 out of pocket, and turned Denniston into an ardent supporter of
health-care reform.
“I
didn’t vote for President Obama the last time, but you can bet I will this
time,” he said. “Without health care reform, I’d be bankrupt. I’d be capped out
on my insurance. Health care reform is keeping me alive.”
Budev
said that health-care reform has benefited patients with chronic conditions and
pre-existing conditions in some ways but has been harmful in others.
“We
have seen changes on both ends,” she said. “Now very few insurance companies
will pay for lodging for families, and these can be very big expenses. It’s
very hard to know what politicians will do. The key thing is for lobbying
groups and politicians to stay very active.”
Although
Cindy worries about her husband’s safety, she sees the psychological benefits
of his newfound passion.
“He
loves the people he meets along the way,” she said. “On every ride he meets
someone who is moved and inspired by him.”
Observed
Budev, “There are so many Bryans out there, and all they’re asking for is this
gift that you’ll have no use for after you die.
When
people meet Bryan, his love for life is so inspirational, he makes them think,
“Maybe I should be an organ donor.”
Contact
this reporter at (937) 225-2209 or mmccarty@DaytonDailyNews.com.
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