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Living donor organ donation can give the gift of life

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For more information about becoming a living donor, visit www.donatelifeindiana.org, or contact Valerie Bartow at Lutheran Hospital at 435-6211. You can also contact IU Health at 1-317-962-2000 or St. Vincent Health at 1-317-338-6701.

Monday, December 24, 2012 - 12:01 am

There's a little red heart on Jean Kaste's driver's license. It marks her as an organ donor if she dies unexpectedly.

But since she was diagnosed with chronic kidney disease, Kaste of Fort Wayne has learned the importance of a different way to donate life.

This holiday season, she urges all healthy people to consider becoming living donors to help more than 1,200 Hoosiers waiting for a life-changing kidney transplant.

Kaste had no health problems and few symptoms before September 2011, when she was diagnosed with medullary sponge kidney (MSK) and Stage 3 chronic kidney disease (CKD).

According to the National Institute of Health, MSK is a birth defect involving the tiny tubes inside the kidney. It affects about one person in every 5,000-20,000 people in the United States.

MSK typically leads to blood in the urine, kidney stones and urinary tract infections. But instead of the usual symptoms, Kaste's MSK led to shrunken and low-functioning kidneys.

At the time, doctors thought she could live the rest of her life at this lower level of kidney function. But by March, her condition deteriorated so drastically, doctors told her she would be on dialysis in two months if she didn't receive a transplant.

Today, more than eight months later, Kaste is still searching for a donor. Miraculously, her condition does not yet require dialysis. But doctors say it could happen any day.

“I'm one of those unpredictable, rare cases,” Kaste said. “It's very hard to predict when things will happen.”

Dr. Andy O'Shaughnessy of Nephrology Associates of Northern Indiana says there are six stages of kidney disease based on the gradual deterioration of kidney function.

“Kidneys are not like a light switch that's either off or on,” O'Shaughnessy said. “They're more like a dimmer switch somewhere in between.”

Stage 1 is normal kidney function. At the opposite end of the spectrum, Stage 5 is complete kidney failure with function at less than 10 percent (less than 15 percent for diabetic patients), and Stage 6 is complete kidney failure on dialysis.

Kaste's kidney function has been stable at 15 percent for the past six months. But doctors say there is no telling when her level will drop again, and when it does, she will need dialysis.

Patients can be on the waiting list for a kidney transplant once their kidney failure is below 20 percent, or at Stage 3, O'Shaughnessy says. Dialysis starts at Stage 5, so there is a window from Stage 3 to Stage 5 in which patients, such as Kaste, can be on the waiting list without dialysis and potentially receive a kidney before dialysis.

But O'Shaughnessy says that only happens to about five of 50 patients who receive transplants every year.

Kaste hopes to be one of those lucky patients, but securing an eligible donor has been more difficult than she expected.

Patients can only register at one transplant center per region of the 11 sharing regions designated by the United Network for Organ Sharing (UNOS). Kaste is registered at IU Health Transplant Institute in Indianapolis (Region 10) and University of Louisville Hospital in Kentucky (Region 11).

Other hospitals in Indiana that have transplant centers include Lutheran Hospital in Fort Wayne and St. Vincent Health in Indianapolis.

Sam Davis, director of professional services at Indiana Organ Procurement Organization, says kidney transplants are the most common type of living organ donations because most people have a spare kidney, and the surgery is less risky than split-liver transplants, which split the living donor's liver in half.

But while kidney transplants are the most common for living donors, they are also in the most demand, says living donor coordinator and kidney transplant program supervisor Valerie Barto of Lutheran Hospital.

In Indiana, more than 80 percent of 1,533 people registered on an organ donation waiting list need kidneys, according to the Organ Procurement and Transplantation Network.

Kelly Coffey, transplant coordinator at IU Health in Indianapolis, says a living donation is their best option.

“It increases life expectancy of the organ and the quality of life,” Coffey said.

This year, half of Lutheran's organ transplants were from living donors, matching the national average, according to Barto.

And Coffey says the holiday season typically inspires more people to ask about becoming living donors.

“People are thinking about helping others,” Coffey said. “Some people who call are just being altruistic. It's not just family members and friends anymore.”

As a mother of three grown children, Kaste initially thought one of them would be able to donate a kidney. But her two eldest children were ruled out for medical reasons, and now her daughter Kim, 21, is being tested.

After completing most of the tests at Lutheran Hospital earlier this month, Kim is scheduled to complete her final two tests at IU Health in January.

She says everything she's learned about kidney disease through her mother and patients on dialysis reminds her of the importance of living donors.

“It seems like a really big blessing to donate life to someone,” Kim said.

For now, Jean Kaste is counting her blessings and encouraging healthy people to consider a different way to be a blessing this holiday season.

“Seriously consider giving a gift that can transform and renew somebody's life,” Kaste said. “Giving a kidney could do that.”