29th September 2007 - Bringing “Heart” to the Road Runner Akron Marathon
Akron,
Ohio - Summer 2007.12 adults, ten of whom had open heart surgery and
two spouses of open heart patients, have formed three relay teams
to participate in the Road Runner Akron Marathon on Saturday, September
29, 2007. The teams are named respectively:
• Valve-O-Lenes I
• Valve-O-Lenes II
• Cardiac Athletes.
Organization of the three relay teams started in early 2006 when Mark
Siwik, a lawyer and business consultant from Broadview Heights, Ohio
and Paul Hobbs, a structural engineer from Burlington, Vermont, organized
a five person relay team to participate in the KeyBank Vermont City
Marathon on Sunday, May 28, 2006.
Four of the five runners in Vermont had undergone open heart surgery
between December 2004 and May 2005 and the fifth runner underwent
her second open heart surgery three months after the race. Siwik,
an avid marathon runner, and Hobbs, a former state cycling champion,
wanted to bring together fellow athletes to celebrate their recovery
from open heart surgery and to trade experiences about what it’s
like to endure and recover both psychologically and physiologically
from a life-threatening heart condition.
“Last year, we had five heart patients meeting for the first
time; this year I thought we could double that,” Siwik said.
The teams bearing the name “Valve-O-Lenes” met through
an internet support group for heart patients known as ValveReplacement.Com.
Founded in 1999 by Hank Eyring, members use the website to trade experiences
about their congenital heart defects, discuss life before and after
open heart surgery, and learn about various treatment options.
The oldest “Valve-O-Lene” and the runner traveling the
farthest is Mel Pugliese from Lake Havasu City, Arizona. Mel, 69,
started running 28 years ago as a New Year’s Resolution and
completed 50 marathons before undergoing aortic valve replacement
in October 2006.
The Cardiac Athletes team represents
the internet support group started by Lars Andrews, Chief Cardiac
Physiologist at St. Mary’s Hospital in Portsmouth, United Kingdom.
Andrews’ call for stories for athletes overcoming heart-related
health issues were heard by New Yorker Dave Tuttle, 54, who took up
marathon running after heavy smoking led to quadruple bypass at age
46.
Tuttle’s teammate in the Akron marathon relay is Mark Collier
from Gilbert, South Carolina. Collier, 61, almost died from cardiac
arrest in September 2006 from an irregular heart rhythm known as “Long
QT Syndrome". Collier has set his training so that he will run
his 10,000th running mile upon completion of the Akron marathon (it
also will be one year and five days from his initial cardiac arrest).
An added bonus to this year is that two spouses of heart patients
are also participating - Michelle Hobbs and Pam Bonner, both of whom
faced the challenge of supporting their husband-athletes before and
after surgery.
Pam says that a spouse of a heart patient faces his or her own set
of fears and that it was painful to watch her husband, Philip, a very
competitive marathon runner, deteriorate before surgery.
She says life after surgery brought a new set of emotions that ran
the gamut from “admiration for Philip’s commitment, sorrow
that I just can’t make his recovery happen immediately, and
frustration when he won’t take my advice. As his wife and running
partner, don’t I always know what’s best?”
The spirit of the group is captured by Laura Fucci, a 47 year old
physical therapist from Mendham, New Jersey. In January 2005, Laura
underwent open heart surgery to replace her aortic valve and to repair
an aneurysm. She’s thrilled to able to compete again and serves,
as a living example, to her patients that life should be lived to
the fullest.
As you might expect, the group won’t be resting on its laurels
after the Akron marathon.One week later, Mark Siwik and fellow Valve-O-Lene
teammate, Tom Price, are traveling to Minnesota to participate in
the Medtronic Twin Cities Marathon and 10 Mile Race.
Both runners are among a 2007 class of 25 “Global Heroes”
being honored by Medtronic for overcoming chronic medical conditions
to maintain a full and active lifestyle.
Siwik is quick to point out that the runners feel uncomfortable being
told that their story is heroic or inspirational but “that everyone
believes that if their story can help one person out there, then it’s
worth sharing.” As an example, Siwik recalls being inspired
earlier this year after meeting another Akron-area family, the Ellsworths,
when Siwik’s son was participating in the fourth annual Jared
Ellsworth Celebration of Life Basketball Tournament.
Siwik learned that (i) Jared died in 2003 at the age of 12, (ii) Jared
was born with the same heart condition as his own, and (iii) Jared
exemplified the meaning of “cardiac athlete,” refusing
to let his heart condition prevent him from excelling in youth sports,
especially basketball.
According to Amy Verstappen of the Adult Congenital Heart Association,
heart defects are the most common birth defect. About one in 120 babies
are born with some kind of heart defect.
All survivors of heart surgery have an increased risk of developing
additional heart problems and many will require additional surgeries
as they age. The United States has a severe shortage of cardiac centers
fully equipped to care for children and adults living with complex
heart defects and is in need of a national patient registry which
can be used to improve existing guidelines for medical treatment and
teaching heart patients how to maintain an active lifestyle.