By Jeff Weiner Naplesnews.com
MARCO ISLAND, Florida — Ken Ryngala used to fly. Then, a crippling disease left him barely able to walk across his house.
He lost his wings when he lost his lungs. Then, he nearly lost his life.
The state recently instituted a new organ donor registration system. The system, called the Joshua Abbott Organ and Tissue Donor Registry, allows Floridians to register themselves as organ donors from the comfort of their own homes, an innovation that Ryngala hopes will lead to an increase in life-saving donations.
That’s because Ryngala,, a former Boeing 747 pilot who received a double lung transplant in 2007 in Tampa, knows what it’s like to wait on a list for a life-granting call that may or may not come in time.
Ryngala, of Marco Island, was diagnosed with idiopathic pulmonary fibrosis. Idiopathic, by its definition, means that the cause of the disease was unclear. However, the prognosis wasn’t.
Ryngala said he was told that, without a transplant, he would die.
“I think I had an unusual reaction to it,” said Ryngala, who said he was calm when he heard the news.
He said that he was focused on the finality of the diagnosis.
“I knew what day I was going to die,” he said.
So, like thousands of others across the nation, Ryngala found himself on a list, waiting in line for an organ. Nationwide, there are more than 102,000 people waiting for organs, including more than 3,600 in Florida alone, according to the Organ Procurement and Transplantation Network.
Wait times for organs can stretch for months or even years. According to Organ Procurement and Transplantation Network data, more than 2,500 patients have died on waiting lists in the U.S. in the current year alone, and more than 86,000 since 1995.
Yet, of the more than 18 million people estimated to be living in the state, fewer than 5 million are registered as organ donors, according to Donate Life Florida.
That’s a number that Jennifer Krouse, a spokeswoman with the organization, hopes to see increase dramatically.
“We sure do hope so,” said Krouse, who touted the simplicity and accessibility of the new system as its most important attributes.
“The new registry allows for 24-hour-a-day access,” she said, adding that registration takes only minutes.
Krouse called the previous system, which required people interested in becoming organ donors to wait in line at the Department of Motor Vehicles, “obsolete” and promised that the new system, despite its easy accessibility, is “super secure.”
However, both Krouse and Ryngala admit that online registration cannot lead to the kind of dramatic increase in registered donors that they hope to achieve. Krouse said that her organization is focusing on education through cooperation with schools and businesses and through the use of public service announcements.
“Really, we have quite a long way to go,” said Krouse of her goal to increase registration and cut down on wait times that can be fatal to those who don’t find a match.
Ryngala was lucky in that regard. He said he only spent about a month on the waiting list; he was bumped up due to the severity of his condition. Still, he said he was only barely holding on when the call came at 2 a.m. to tell him that his organ had arrived.
“When I got the phone call, frankly, my doctor told me I was on my last gasp,” said Ryngala, who said he was on oxygen 24 hours a day.
“I happened to get a very good set of lungs,” Ryngala said. “Not everybody’s that lucky.”
Lucky may be an understatement. Transplants are always tricky, and there’s always a possibility of rejection.
Ryngala’s, so far, seems to have been a complete success.
“I feel like a million bucks,” Ryngala said. “It’s unbelievable.”
Ryngala said he was back to work as a flight instructor within three months of his surgery. Now, he’s waiting for the Federal Aviation Administration to decide whether he is healthy enough to get his wings back, so he can get back in the cockpit and fly again.
Ryngala emphasized the importance of educating the public, in the hopes that more people will choose to donate.
“It’s the most generous thing you can give,” he said.
Ryngala said that he understands if some people have personal or religious objections to organ donation. But the one thing he won’t accept is the idea that people, who would otherwise donate, don’t because they don’t know how to sign up.
“If people aren’t donating simply because they’re not aware, that’s a travesty,” Ryngala said. “It’s clear that there are so many people waiting that could be saved.”
According to Krouse, within about a week of the new system’s July 28 launch, more than 1,400 people already had registered online, leading her to call the launch “a success.”
Ryngala hopes that increased awareness will boost the registry further, helping others to find what he has: A new lease on life.
“I wouldn’t have known who won the election or the Yankees game yesterday; I wouldn’t be here,” he said, before hastily correcting himself.
“I guess I should say the Rays game,” he said.
Donate Life Florida, the organization responsible for the new registry, is a nonprofit organization that was contracted by the Florida Agency for Health Care Administration in April to replace the previous system, which was considered archaic. It receives its funding through voluntary $1 donations collected when people renew their license or vehicle tag.
Donors are kept anonymous, but Ryngala said he was given the option to write a letter to the family of his donor. But he said he hasn’t done so just yet.
“I was waiting to get my wings back so I could tell them,” he said.
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Anyone interested in signing up as a donor or updating donor registration information can do so online, at http://www.DonateLifeFlorida.org.
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