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Waiting for an organ

Donations for transplants become more common, but those in need still must wait

Donations for transplants become more common, but those in need still must wait

March 28, 2005|by JULIE E. GREENE

julieg@herald-mail.com

SHARPSBURG - Stacey Miller isn't waiting for tragedy to befall someone to help her little girl.

In fact, if someone were to die with a kidney that was a match for her 3-year-old daughter, Jayden Renee Miller, at this point Miller said she would take a pass.

That's because Miller, 28, who lives in the Sharpsburg area, learned a kidney from a live donor gives the transplant greater chance of success.

It's not uncommon for people in need of a kidney transplant to ask family members if they are willing to donate a kidney, but it's atypical for them to go outside the family, said Dr. Susan Mendley, director of pediatric nephrology at the University of Maryland Hospital for Children in Baltimore and Jayden's doctor.

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No one in the family is a match for Jayden, who has blood type O positive, Miller said.

In the last three months, Miller and her mother, Paula McMurry, have posted fliers, reached out to people via word of mouth and e-mail, and contacted media such as The Herald-Mail and television talk and news shows to try to find a live kidney donor for Miller.

As of last week, the family was not aware of anyone who had matched but knew of at least one person who was getting a blood test to see if she could be a kidney donor candidate for Jayden, said McMurry, 49, of Hagerstown.

Tawana Kesecker also is looking beyond her family for a kidney.

Kesecker, 29, of Clear Spring, said she found out in mid-February she would need a kidney and doesn't know yet if any family members would match, but has at least one or two friends who are willing to be tested to be a donor.

In addition to asking people if they are interested in donating a kidney, Kesecker is trying to get a Web page started to spread word of her need.

"At this point in time, dialysis is my lifeline," Kesecker said.

Kesecker isn't the first member of her family to need an organ transplant. Her uncle, John Kesecker, has needed a liver for about four years.

He must wait for a cadaver liver to become available because he needs an entire liver, said John Kesecker, 47, of Clear Spring.

Organs that can be donated by a live donor are a kidney and perhaps a partial liver and lobe of the lung, however the latter two are delicate procedures, said Margaret Cellucci, spokeswoman with the Transplant Resource Center of Maryland in Baltimore.

Once a person is dead, kidneys, liver, pancreas, heart, lung and intestines can be donated, Cellucci said.

Organ donation has increased, due in part to a 1996 federal rule mandating hospitals report every patient death in hospitals, said Shelly Morningstar, vice president of corporate communications and development for the Center for Organ Recovery and Education (CORE), which serves West Virginia, western Pennsylvania and part of New York.

In 2004, Maryland had its most successful year yet for organ donation with 401 people getting a life-saving organ transplanted from deceased donors, according to the Transplant Resource Center of Maryland.

Outreach through schools, churches, civic groups, newsletters and training Motor Vehicle Administration customer representatives to answer questions about the donor designation on driver's licenses has helped increase awareness, Cellucci said.

The most important thing someone who wants to be a donor can do is tell their family of that desire because ultimately it will be the family whom medical personnel will talk to about donation when the donor dies, Cellucci said.

It helps if the family knows the donor's medical history, including good and bad health habits, she said.

Miller and McMurry are not designated donors on their drivers' licenses, but they said that will change, because of Jayden, when they renew their licenses.

While Jayden can survive on dialysis, a kidney transplant is the best way to allow for rehabilitation and survival, Mendley said.

Jayden's size makes the surgery more complex. Even though she is a small child, she would get an adult kidney because kidneys from children younger than 5 have a high risk of clotting, Mendley said.

Unless Jayden showed you her belly where her bandages and MIC-KEY - a dialysis valve - are, you wouldn't know both her kidneys have failed to the point she needs a transplant.

The 32-pound, 3-foot-2-inch girl runs around the house from toy to toy like any active, healthy child.

Jayden's 10 daily hours of dialysis are done while she is sleeping, Miller said. Sometimes Jayden gets tangled in the catheter tube when she tosses and turns, but the schedule allows her greater freedom during the day.

And at least she is home now. After her kidneys failed in January 2004 she spent 74 days at the University of Maryland Medical Center, her mother said.

"The whole thing's been pretty overwhelming. It has really been a nightmare that I wouldn't wish on anyone," Stacey Miller said.

Becoming a donor


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