By Sandra V. Rodriguez • srodriguez@citizen-times.com • July 30, 2010
ASHEVILLE — Julie Wallace always said yes to organ donation.
But in recent years, the little heart on her driver's license has held deeper meaning because she came so close to losing her 12-year-old son, Jacob. Both of his kidneys failed nine years ago, when Jacob was 3.
“It was a nightmare,” she said. “I literally just prayed every night that he would make it. It's a rough thing when you're waiting for a transplant for a loved one because you know that someone else's loved one has to pass away…”
That someone was a woman who suffered a fatal aneurysm while exercising. She left behind children and a husband, who consented to donate her organs. The woman gave at least seven people a second chance at life.
There are more than 3,300 North Carolinians included in the transplant waiting. Unfortunately for many, the number of donors isn't keeping up.
Kirk Truesdale was diagnosed with hepatitis C five years ago, but doctors didn't catch it in time to save his liver. Truesdale has been on the transplant waiting list for nearly three years. At one time, he was moved to hospice care because of how sick he became. His wife, Shirley, even began making funeral arrangements.
“A lot of people don't understand the things that you go through when you're waiting for a transplant,” Shirley said. “You're dealing with a very sick person that if you let yourself think about a lot, you'll feel like the sand is running out in the glass.”
Truesdale knows his sickness is harder on his wife and 12-year-old daughter, Keeley, than it is on him. The ammonia buildup in the one-time ironworker's body often leads to his legs or belly swelling up with fluid. This causes what Shirley describes as Alzheimer's-like behavior in Truesdale, who can get combative or ramble endlessly or wander off during these spells.
“It's been hell,” he said. “There are times when you want to just say to God, ‘Just take me.'”
The state has made strides to increase donor registration in recent years by making it easier to register in person at the Department of Motor Vehicles or online or at DonateLifeNC.org, and passing the Heart Prevails law in 2007. It turned the heart on the driver's license from a symbol of intent to donate to legal consent for organ and eye
“In the past, I think people realized it didn't mean a whole lot because they knew the family could override it,” Melissa Parker, organ procurement specialist with LifeShare of the Carolinas' office in Asheville. The nonprofit provides tissues and organs for transplantation for people in southwestern North Carolina. “But now that heart means something.”
Parker has worked with donors for the last 15 years, and she's never seen the waiting list numbers go down. When she first started doing this job, there were about 30,000 people on the waiting list, and now it's nearly 108,000. The list increases by one every 12 minutes, according to Carolina Donor Services.
The situation is especially critical for kidney transplants for minorities who make up “disproportionately” high number of people on the waiting list, said Debbie Gibbs, with LifeShare in Charlotte.
It's largely because of high blood pressure and diabetes, which are more common in the African-American, Hispanic and Native American communities.
In North Carolina, 60 percent of the kidney transplant waiting list is made up of African-Americans as opposed to 35 percent nationwide. The state's donor rate for African-Americans was 26 percent in 2009.
Generally, Parker said race does not play a role in who gets an organ transplant. For any transplant, the most important factor is always blood type. But it would be best, in cases of kidney or pancreas transplants, that a person received the organ from someone who has similar tissue, she said.
“We never think that someone in our family or one of our close friends is going to need a transplant,” Wallace said. “He (Jacob) was born a completely healthy child, and some freak illness caused him to be very ill. He would have died, absolutely, at age 5 had we not gotten his transplant.”
Even now, eight years after the “nightmare” ended, the fear and worry are never far. Wallace still gets anxious when Jacob shows signs of fever.
That's something new parents Larry and Meghan Robertson understand intimately. The couple's 7-month-old baby, Ty, was born without a right kidney, and the left one is only one-third its normal size. The doctors had very little hope that he would make it. It was devastating news for the couple, who had spun so many dreams in the last nine months.
“It's not what any mother looks for when she says, ‘I'm pregnant,'” Meghan said. “I didn't think about my baby being in NICU (neonatal intensive care unit) and going through all this.”
While families everywhere were waiting for Santa, Meghan spent last Christmas Eve in a Winston-Salem hospital praying that her baby would make it through the night.
But what a difference a few months makes. With the help of a dialysis machine, 7-month-old Ty has shown strength of will that makes his parents hopeful that he will hold on long enough to get on the national organ transplant waiting list.
It's hard to tell how long the wait will be for Ty once he gets on the list. He needs to weigh 22 pounds before that happens. But the Robertsons' family and friends are hoping to speed the process along by getting tested to see if there is a match.
“I want to see him grow up,” Meghan said. “I want to see him go to school. Go to college. Get married and have my grandbabies. I want to see all that, and I hope that he is more than able to do it.”
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