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Online organ donor registry could help save lives

Lt. Lori Lyons of the St. Pete Beach Fire Department had polycystic kidney disease. She received a kidney donated from a 10-year-old. Just a few months after her Oct. 1 transplant, Lyons returned to full duty.

CHRIS ZUPPA | Times

Lt. Lori Lyons of the St. Pete Beach Fire Department had polycystic kidney disease. She received a kidney donated from a 10-year-old. Just a few months after her Oct. 1 transplant, Lyons returned to full duty.

ST. PETE BEACH

Lori Lyons is a tough, confident woman who has seen a lot in her 23-year career as a paramedic. But she blinks back tears and stumbles on her words when she talks about her personal medical drama, the organ transplant she received in October.

Compounding the emotion: Lyons' new kidney came from a child.

"There's not a day that passes that I don't think about that family or the 10-year-old," says Lyons, 44, who had been on the transplant waiting list for almost two years.

Lyons, a St. Pete Beach Fire Department lieutenant, had polycystic kidney disease, a genetic condition that causes fluid-filled cysts to grow in the kidneys, eventually destroying them. Patients live with constant fatigue, chronic back and joint pain, and frequent urinary tract infections.

Most patients need either kidney dialysis or a transplant. With dialysis, Lyons would have had to give up her job as shift commander for two fire stations. But she was down to just 8 percent kidney function, and, according to her doctors, was about two weeks away from having to start kidney dialysis. Then a donor was found.

"I really lucked out," she says.

The call came at 1 a.m. Lyons and her crew had just returned from an emergency fire call. Back at the fire station, they were all looking forward to getting some sleep.

But then Lyons' cell phone rang. It was a transplant coordinator from LifeLink, who told Lyons to be at Tampa General Hospital by 6 a.m. for surgery.

Streamlining the process

According to LifeLink of Florida, more than 100,000 American adults and children are waiting for transplants; 3,500 are waiting in Florida. Every 35 hours, someone in Florida dies because a donor could not be found.

April is National Donate Life month, designated to help promote organ donation. But what really could boost donations is a new online organ and tissue donor registry created by the Florida Agency for HealthCare Administration with an alliance of state organ donor programs.

Currently, you have to go to the driver's license office or an agency such as LifeLink to get the paperwork to become an organ donor. The forms are then mailed to Tallahassee and scanned into the computer system. The process can take months.

But starting by mid to late June, the new registry will allow Floridians to sign up online any time of the day or night. Everyone who signs up will have their own password, so they can change their registration whenever they like.

Currently, 30 percent of Florida drivers are registered as organ donors. According to LifeLink, some states with online sign up have registered 70 percent of drivers.

You do not have to have a driver's license to be an organ donor. Nor do your survivors have to agree with your wishes to be an organ donor and give final permission. Signing up with the state registry is legally binding, but having family cooperation helps with the donation process. Lyons got her new kidney because the family decided upon the child's death to donate organs.

Many are still waiting

The kidney is the most commonly transplanted organ and the one in greatest demand in the United States. Contributing factors include the staggering number of people with diseases that damage the kidneys, such as diabetes, high blood pressure and genetic disorders like polycystic kidney disease.

When Lyons got that early-morning call from LifeLink, she was told there was an 85 percent chance that the donor kidney would be a suitable match.

Her husband, her boss and several co-workers all were screened to be living donors for Lyons, but none were suitable. Tired as she was when the call came, Lyons knew immediately what good news it was.

She chokes up again when she recalls that moment. "This is it," she thought. "It's going to save me, it's going to save my career, it's going to save my life. I'm going to have my life back. I'm going to feel good again."

The transplant surgery was on Oct. 1. Lyons was back at work in three months, hauling heavy gear, climbing stairs, keeping up with the guys on her crew.

The physical recovery has been complete, but she still aches with grief for the family who lost their 10-year-old. She has written to thank them, but like many donor families, they declined to respond.

Lyons expresses her gratitude by speaking publicly about her experience, hoping to help others.

This week, 599 people are on the list at Tampa General Hospital, waiting for a kidney.

Irene Maher can be reached at imaher@sptimes.com

. Fast facts

Organ donations

Almost anyone can be an organ donor, regardless of age. "There are organ donors well into their 90s,'' said Jennifer Krouse, manager of public affairs at LifeLink of Florida. Even infants can be organ donors. Physical health is the determining factor. Two major disqualifiers for organ donation are HIV infection and active hepatitis C. To learn more about who can be an organ donor, go to www.lifelinkfound.org/bigfacts.cfm.

Online organ donor registry could help save lives 04/15/09 [Last modified: Wednesday, April 15, 2009 3:32pm]

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