Lehigh Valley Coalition for Organ & Tissue Donation
Most of us are pretty healthy. We skate through life with assorted cuts and bruises, perhaps a broken bone or a bout with the flu.
I couldn’t walk more than one block without leaning against a building and trying to catch my breath.
But over 122,000 people nationwide (and many in the Lehigh Valley) aren’t so lucky. Their survival depends on receiving a desperately needed organ transplant. Unfortunately, the demand far outstrips the supply; that’s why 22 of them die each day.
The Lehigh Valley Coalition for Organ and Tissue Donation (LVC), an all-volunteer group affiliated with Philadelphia’s Gift of Life Donor Program, is dedicated to improving that situation through its programs of outreach and education.
“There are nearly 11 million people in our coverage area [of eastern Pennsylvania, southern New Jersey and Delaware] and, our staff can’t reach everyone. That’s why we began organizing coalitions about 20 years ago,” said Howard M. Nathan, president and CEO of Gift of Life. “They help us to educate communities about the need for organ and tissue donation and to persuade people to register as potential donors.”
Activities of each coalition depend upon the group itself – one may regularly address high school students; another might run a support group for recipients.
“But what’s cool about the Lehigh Valley Coalition is that they’ve taken the initiative to do just about everything!” he added.
Spreading the word
And he’s right. Members of the LVC take various paths to encourage registration – mainly by demonstrating that receiving a transplant is a life-changing experience.
• Speakers’ bureau: Aimed at schools, non-profit organizations, service clubs, hospitals.
• Poster/essay contest: Middle-school and high-school students compete for cash prizes and other recognition.
• Fashion show: Local merchants provide clothing, accessories and services modeled by Coalition members and supporters in this annual event.
• Donor Dash: The Donor Dash —10K and 5K races, and a 3K walk —annually celebrates successful transplants and gives hope to those still on the list.
• National Donor Sabbath: Donor families, recipients, and medical professionals bring relevant information into houses of worship (this year, it’s November 11 – 13).
• Health fairs: at hospitals, nursing homes, schools, businesses and other settings
• Transplant Games: Transplant recipients compete biannually for medals in track and field, swimming, tennis, basketball, and other activities.
• Facebook page: Updates on LVC activities, event listings, as well as transplant-related news from around the world
• Community events: the Emmaus Halloween parade, the Celtic Classic, and Allentown’s St. Patrick’s Day parade, among others
“All of this provides a strong message about organ and tissue donation,” Nathan added. “When Coalition members tell their stories, it can play a big part in helping someone decide to register.”
Here are two of them.
The Giving
Bethlehem resident Sue Seidel’s son Brian was just 22 years old, engaged, and ready to graduate from Embry-Riddle Aeronautical University.
“He belonged to a motorcycle club at school,” she recalled. “On the night of September 29, 2002, he and his friends were riding on highway I-4. An electrical contractor ahead of them had a 20-foot extension ladder attached to the bed of his pickup with nothing but a wire coat hanger.
“When the ladder slipped off the truck, Brian was the only rider to hit it. He was thrown from his bike, and slid head-first into the truck. Even though he was protected by a helmet, his brain stem snapped.”
At the hospital in Orlando, Sue agreed to donate his organs. “Brian was able to help nine people that night,” she said. “He donated his heart, both lungs, liver, pancreas, both kidneys and both corneas.”
Since then, Sue has spoken to thousands of people at service clubs, in middle- and high schools, and in Philadelphia’s “Donation Champion” learning sessions for critical care staff.
She’s also had repeated contact with Carol Straley, a Floridian who received one of Brian’s kidneys. Now 65, she’s doing extremely well, Sue reported.
The Receiving
A common myth is that a new organ doesn’t really improve your health, but just maintains the status quo. Macungie resident – and heart recipient – Todd Stickel belies that idea.
Thanks to a congenital heart defect, Todd had valve replacements at the ages of 21 and 48. Six months after the second replacement, his condition declined.
“My wife, Bonnie, and I were in New York, walking to see the “Dr. Oz” show,” he said. “It was only four blocks from our hotel, but I couldn’t walk more than one block without leaning against a building and trying to catch my breath.
“I knew something was wrong.”
He entered the transplant waiting list in April 2012, and underwent surgery on July 7, 2013 – after spending the previous four months at the Hospital of the University of Pennsylvania, as his condition continued to deteriorate.
After just six months of intensive rehab and exercise, he returned to his job as an outside sales rep for ductile iron pipe. “I have a big territory,” he said, “and I’m constantly on the road, visiting engineers, distributors, contractors – wherever I have to go to promote my products.”
He also braved heat and humidity during the 2014 Transplant Games in Houston – running in a 5K, and competing in singles and doubles tennis, singles table tennis, basketball, and volleyball. (Bonnie and their daughters Morgan and Kendyl ran with him, and he sliced 10 minutes off his 5K time from that year’s Donor Dash.)
His most memorable experience of the games was the person who presented him with his silver medal for volleyball – a donor mother whose son had died 18 years before. “That was very special,” he said.
Todd will meet his donor family for the first time in June, when they all attend the Transplant Games in Cleveland.
Leading the Way
“Our service region is the ‘most-giving’ in the U. S.,” Nathan said. The organization coordinated 1,291 organ transplants from 483 local organ donors, and 352 more from other areas of the country, in 2015. That made Gift of Life the leading organ procurement organization in the U. S. for the eighth consecutive year!
“Historically, the Lehigh Valley has really been a leader in donation,” he concluded. “Typically, between 67% – 75% of the residents here say ‘yes’ to donation.”
Want to know more about organ and tissue donation? Visit donors1.org, or unos.org/transplantation/faqs/#age. And be sure to follow the Lehigh Valley Coalition on Facebook!
