Waiting, hoping, for a kidney donor

Waiting, hoping, for a kidney donor
After two transplants, woman is now in need of third costly operation

By RICK CLEMENSON, Staff writer
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First published: Sunday, March 4, 2007

COLONIE -- Melissa Daniels is a wisp of a woman, but even the strongest man in the world would have a hard time dealing with the pain she's lived with since childhood.

Diagnosed at age 2 with the genetic kidney disease cystinosis, Daniels has had two kidney transplants and endured years of dialysis that have taken its toll on the 4-foot-6 inch, 80-pound woman.

Now she needs a third transplant.

Ruth Martin from Blessed Virgin Mary of Czestochowa National Catholic Church in Latham helped organize a jewelry sale Saturday at the church to raise money for the procedure that will be done at a yet-to-be-determined date by Dr. Robert Montgomery at Johns Hopkins Comprehensive Transplant Center in Maryland.

Proceeds from the jewelry sale will be used for the family's trip to Baltimore, including lodging, food, aftercare expenses and return visits for checkups, and to hold over the rest of their family in Schenectady while Daniels' mother, Joellen Pepper, is out of work taking care of Daniels.

Daniels, 29, looks forward to the day when she can finally come off dialysis for the first time in eight years. She remembers the last time she had full kidney function in her body.

That was after her second transplant when she was a freshman at Schenectady High School.

"It's truly amazing. It corrects so many things you've been trying to keep up with on dialysis," Daniels said. "You don't realize how bad you felt until you have the transplant."

She said the transplant instantly re-energized her.

"That was an absolute miracle to my family," said Daniels, who now has no kidney function. Her first kidney transplant came from her mother when Daniels was 6 years old, in 1983.

Daniels embraced life after the second transplant. In the years to follow, she went to a prom, graduated from high school, traveled to Walt Disney World, got a job and earned a bachelor's degree from the College of Saint Rose and a graduate degree in social work from the University at Albany.

But her condition had deteriorated by the time she graduated from UAlbany. Although she'd like to have a job helping children with chronic and terminal illnesses, Daniels said it's difficult to work because she is often tired and needs to have dialysis three days a week at Capital District Dialysis in Schenectady.

"I have this education and want to use it, but it's very difficult," Daniels said.

Doctors at Albany Medical Center say the transplants and blood transfusions have made her sensitized and finding a match through the hospital is unlikely. Daniels has been on the United Network for Organ Sharing waiting list for eight years.

"I've been living with this my whole life. I've been scared a lot and there's been times when I've said I don't want to deal with this anymore, but my family and support system keeps me going," Daniels said.

In addition to her kidneys, the disease also has claimed her spleen and gall bladder. She spent about six months in the hospital during 2004-05.

Albany Med doctors urged her to aggressively seek a suitable donor and referred her to the Paired Exchange Program at Johns Hopkins in which pairs of donor-recipients are paired with other donor-recipients.

In Daniels' case, her donor, a cousin in Utah, is not a match for her but they hope the program will find a donor who is. The operations -- which could include five or six pairs of donor-recipients and dozens of surgeons and anesthesiologists -- would be performed at the same time, Daniels said.

For now, she waits, expecting The Call from Johns Hopkins. Montgomery is confident a match will be found by the end of the year, Daniels said. If that doesn't happen, she could live the rest of her life on dialysis.

She doesn't discount a fourth transplant may be needed as well.

"There's no guarantees it will last forever," said Daniels. "But it's a gift of life to have a transplant."

Rick Clemenson can be reached at 454-5030 or by e-mail at rclemenson@timesunion.com.

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