Waiting hard part for many needing organs

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Waiting hard part for many needing organs
BY ANNE GEGGIS, STAFF WRITER 
  July 25, 2011 12:05 AM

EDGEWATER -- Kayla Crouser is 24 and she needs a kidney.

A genetic flaw caused polycystic kidney disease and turned the former New Smyrna Beach High School student, who once played every sport she could, into a young adult who can barely get out of bed on some days. Going to dialysis is just about all she can accomplish -- a three-hour procedure repeated three times a week.

"I'm just stuck right here, not going anywhere," she said.

She is one of 470 patients on a waiting list for a kidney transplant at Florida Hospital Orlando, where Florida Hospital sends its patients in Volusia and Flagler counties for transplants. Halifax Health Medical Center, which operates the only transplant center in Volusia and Flagler counties, has 45 people on the waiting list for its kidney transplant program.

Crouser's mother, Donna Nichols, has been ruled out as a donor. But just watching her daughter's strength fade since she was diagnosed in 2006 is more than she can take.

Nichols raised $5,000 for her daughter's transplant and is now asking the community for something money can't buy.

They are looking for someone with O-type blood willing to be tested to see if his or her kidney would make a match with Crouser's body. Nichols has written letters to newspapers, posted a plea on Facebook and started a blog in the effort.

"I want to give her a life again, but I can't," said Nichols, 49, shaking her head as tears rolled down her face.

About 89,350 Americans are on waiting lists for the same fist-sized organ that filters waste from the bloodstream, according to the Organ Procurement and Transplantation Network. For them, a new life could be just one phone call away, but that call might never come.

An estimated 18 people a day die waiting for an organ transplant -- 12 of those are waiting for a kidney, according to the U.S. Department of Health & Human Services.

In that regard, though, patients in Florida are more fortunate, according to the Scientific Registry of Transplant Recipients. Patients at the majority of New York transplant centers have a median wait of more than six years for a kidney transplant, the most common type of transplant. In comparison, Florida's kidney transplant centers have wait times less than 24 months and only Shands Jacksonville and the Mayo Clinic in Jacksonville have median waits longer than 24 months.

Mike Mulrooney, Halifax's transplant coordinator, said Florida's elderly population means more donated organs are available. If someone dies in this area who is an organ donor, the organ is tissue typed and matched against people on the waiting lists at transplants centers from Indian River County to Jacksonville.

If no match is found, lists statewide are checked, and then in regional states, continuing on until a match is found, perhaps going across the country.

But locals get dibs first.

Begun in 1973, Florida Hospital Orlando has watched its kidney transplant caseload skyrocket from 20 per year in the late 1980s to 177 transplants last year. The services have expanded to include pancreas and liver transplants. And the hospital hopes to add heart transplants in a few months once it finds a heart transplant surgeon.

Florida Hospital could not say how many of the 470 patients on its waiting list for kidney transplants in Orlando are from Volusia and Flagler counties.

"As more people came to this area, that increased the percentage of the population who were experiencing renal failure and were in need of a transplant," said Leigh Ann Burgess, administrative director of the Florida Hospital Transplant Center in Orlando, on the growth of that hospital's program.

By contrast, Halifax Health's program is in its infancy. Twenty-seven transplants have been performed there since its kidney surgeon, Dr. Rod Mateo, came on board nearly two years ago.

The majority of organs have come from cadavers. Halifax has a high success rate in getting usable organs from cadavers to offer to transplant candidates, which helps explain why wait times are shorter here than elsewhere in the country, Mulrooney said.

"Eighty-three percent of our donor opportunities occur," Mulrooney said of Halifax's success rate in getting usable organs.

Still, the wait can be agonizing. This month marks two years since Wayne Madigan, 56, of Holly Hill got on the kidney transplant list at Halifax. He said he's itching to do more than just get through dialysis treatments, which leave him too drained to do much else.

"This is driving me crazy," he said, of sitting around. He said he'd love to put his 30 years working on machine equipment to use again.

High blood pressure landed him in kidney failure after a heart attack in 2006. Now, dialysis is keeping him alive, but the waste that it fails to remove during the filtration process builds up. As a result, his skin is thin and full of blisters and bruises.

He said he sleeps with a cell phone at his side. If the caller ID lights up with the word "Halifax" on it, his pulse starts racing, he said. So far, though, he's only had a call to be the back-up recipient -- an opportunity that he decided to pass on because of the donor's previous history of cancer.

Sometimes, he said, he looks around at the dialysis room and feels a twinge.

"It's really hard watching people die," he said. "First they come in using walkers, then wheelchairs and they don't come again."

Over in Edgewater, Crouser said she's tired of being a frequent visitor in the emergency room at Bert Fish Medical Center in New Smyrna Beach. She's had numerous problems with blood infections that have required hospitalization and intravenous antibiotics.

"I want to be able to get a job, go to work, take a walk," she said.

Her mom, looking on, just shook her head, "It's the little things that we take for granted that she can't do -- it's unbelievable."

Anyone with O-type blood who might be interested in giving a kidney to Kayla Crouser can call her mother, Donna Nichols, at 386-409-0910 or email dcrouser@hotmail.com.

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