Still waiting for transplant

Still waiting for transplant

By Doug Hoagland
dhoagland@selmaenterprise.com
Julie Kestly still waits.

She waits to get a new kidney and to begin new treatment that would make her body less likely to reject a transplanted organ. She also waits to get off dialysis treatments -- necessary because of her kidney failure -- that make her "dog tired."

Kestly, 46, started waiting for a kidney 2 1/2 years ago.

Hers is a story that many in Selma have followed because her coffee/sandwich shop, Heavenly Grounds, is a popular downtown hangout and because Kestly has made many friends during her 10-plus years in town.

The last two years have taken their toll, and Kestly said she has put Heavenly Grounds up for sale because of her exhaustion. She closes early several days a week. "Selling is something I feel I have to do," she said. "I don't feel I'm being totally fair to my customers."
If she doesn't find a buyer by the end of the year, Kestly said she will close her doors: "I don't see any other option."

However, she tries to remain upbeat about life and her future. "God has blessed me," she said. "I'm still doing my stuff. I'm trying to walk on knowing that God's going to take care of me and it's all going to work out."

Kestly still performs gospel music in churches -- both solo and with a quartet -- and she's taken over directing the choir at the First Christian Church in Selma. She's introducing Southern Gospel to the congregation.

"We're having a lot of fun together," Kestly said. "I told them I had a friend who once explained to me, 'If it's not Southern, it's not gospel. And if it's not country, it's not music. It's just a bunch of noise.' "

The Rev. Janet Chapman at First Christian said Kestly is exuberant and energetic, and she's making it fun for the church to learn a new style of music.

Kestly also has started speaking to groups about her kidney disease and her journey toward a transplant. Because she never liked being in the spotlight -- which she admits is odd for a singer -- her comfort in public speaking surprises her.

It also gives her hope. "Because of my singing and my speaking, I don't think God is done with me," Kestly said. "But if I'm not long for this world, I don't want to leave with any regrets. I want to live life to the fullest that I can."

She said she's tried to do that since first being diagnosed with kidney disease in her early 20s.

Kestly doesn't have diabetes or high blood pressure -- two common causes of kidney problems. And doctors never have pinpointed the cause of her disease, which has grown worse since Kestly moved to Selma 15 years ago with her then-husband Jeff Kestly, who is Selma's fire chief.

A few years after opening Heavenly Grounds in late 2003, her prognosis became more dire. She needed a transplant right away because her kidneys were functioning at only 10 percent of normal. When no donor was immediately identified, Kestly began dialysis.

A machine removes her blood, filters it as her kidneys should and then returns the blood to her body during three-hour dialysis twice a week at Selma DaVita downtown. Kestly is a positive force at DaVita, said renal dietitian Carol Allen.

"She's a ray of sunshine" who laughs and talks with everyone, in addition to making blankets for other patients chilled by the dialysis process, Allen said: "A lot of patients miss her on the days she's not here."

Kestly would be free of dialysis with one healthy kidney -- and she now has a donor waiting in the wings. Kestly calls her donor "Amanda," a friend of five years who lives in the Selma area. Kestly declines to say much more about Amanda to protect her privacy.

However, having a donor isn't the total answer because Kestly suffers from another health problem that could make a donation fail. She has an elevated level of antibodies -- proteins in the immune system that regulate the way the body recognizes foreign substances. If a transplant occurred before treatment lowered the antibodies, they would attack the donor organ, leading to its failure, Kestly said.

A patient can get the antibody condition from pregnancy, transfusion or a previous transplant, with pregnancy the most likely cause in Kestly's case. She has three sons, 24, 22 and 18.

To lower the antibodies, she received treatments at a Los Angeles hospital during the last year. But the treatments didn't work, and there were times when all the waiting dragged her down. "I have my dark moments when I say, 'Oh, God. What about me? I'm still down here,' " she said.

Her friends also get frustrated seeing Kestly struggle. "Julie has a very warm, welcoming demeanor," said Laurel Ridgway, a morning regular at Heavenly Grounds. "We want to see her get well."

And perhaps events are turning in her favor.

This spring, Kestly's doctor sent her to Cedars-Sinai Medical Center in Los Angeles for a new treatment using a processed form of the proteins produced by the body to fight invading organisms. Cedars-Sinai has used its new treatment on about 150 patients in the last three years, and 132 were able to get transplants, said Ashley Vo, director of the transplant immunotherapy program.

Kestly hopes to begin treatment this summer, and she's already looking beyond that.

"My body is going to go from tired to woo-hoo!" she said. "People say they can't keep up with me now. They're going to have to scrape me off the ceiling when I get my kidney."

Kestly will speak and sing at 10:30 a.m. Sunday at Selma's First United Methodist Church.

http://www.selmaenterprise.com/articles/2009/06/17/news/doc4a39309a1445d975409017.txt