Heather Ledbetter: A Second Chance with a New Liver

A life-long Henderson County native receives a second chance at life with a liver transplant after a rare bone marrow disorder caused life-threatening blood clots in her liver.

Heather Ledbetter:  A Second Chance with a New Liver
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Heather Ledbetter is a woman of few words and a constant smile.

Media contact: Tom Hughes, (919) 966-6047, tahughes@unch.unc.edu

Wednesday, Sept. 19, 2012

Written by Elizabeth Swaringen for UNC Health Care

CHAPEL HILL, N.C. – The coaster on Heather Ledbetter’s coffee table reads “In riding a horse, we borrow freedom.”

A companion coaster could read, “With a liver transplant, you get a second chance.”

Heather, 28, of Flat Rock, N.C., got her second chance on July 19, 2011, during a liver transplant at UNC Hospitals after a rare overproduction of red blood cells caused her liver to fail.

“I know I’m lucky to be alive,” said Heather, a woman of few words and a constant smile. “But not a day passes that I don’t think about the 37-year-old man who died in a car accident and was an organ donor.  Because of his decision, I’m here.  

“It’s hard to express how thankful my family and I are, and it’s equally hard to imagine his family’s grief.  I pray for them.  I hope to meet them when the time is right.”

And timing is everything, in life and in death.  

“Heather’s opportunity for a successful transplant was diminishing, and the donor liver came just in time,” said David Gerber, MD, chief of the abdominal transplant program at UNC Hospitals and leader of Heather’s medical team in Chapel Hill. “She really was getting sicker before our eyes.”

Two years earlier Heather had been diagnosed with polycythemia vera, a rare bone marrow disorder that causes an overproduction of red blood cells.  

Like most polycythemia vera patients, Heather managed her disease and lived her life, monitoring the condition with monthly blood work.

She worked a full-time job she loved as a receptionist at Etowah Valley Veterinary Hospital, and the competitive horsewoman trained and rode Raisin, a Paso Fino known for its gaited, smooth ride that’s perfect for mountain trails.

And for the last six months of 2010 she put in 20 hours a week of sweat equity helping to build her home. Moving in was a great birthday present to herself that December.

But in June 2011, the polycythemia vera caused life-threatening blood clots in Heather’s liver, and she was airlifted to UNC Hospitals on June 24.   

Angela Cairnes and Valerie McMahon, two aunts who live nearby who had helped raise Heather, drove the four hours to Chapel Hill as quickly as they could.  A third aunt, Linda Cairnes, flew in from Lexington, Ky.  A fourth aunt, Phyllis Cairnes, drove the five hours from Kingsport, Tenn.  

Uncles by marriage, Marty McMahon, Kevin Phillips and Rolla Wade, were all there for Heather, too, as was her younger brother, Patrick, and cousin, Martin McMahon.  And they all still are.

Without a healthy liver, Heather’s kidneys were failing.  Her normal 120-pound body ballooned to 250 pounds due to fluid retention.  Already in intensive care, by early July she was on dialysis 24/7.  

A stent, intended to increase blood flow to her liver, quickly clogged and a replacement stent was required. Imaging showed a clot in the hepatic vein, a major artery leading to Heather’s heart.  Even if a donor liver came in time, doctors warned the family that the clot could dislodge when the transplant surgery started.  It was a risk Heather and her family had to take.

The surgery started at 6 a.m. Updates came every hour. Shortly after noon, the transplant was completed in about half the time expected.

And the blood clot in the hepatic vein?  “It wasn’t there,” Linda said.  “Post-transplant the doctors said they couldn’t explain it, but in that instant we knew God had worked a miracle.”

While family members rotated being in Chapel Hill for Heather, they stayed at SECU Family House,  the 40-bedroom hospital hospitality house minutes away from UNC Hospitals that provides comfortable, convenient and affordable housing for seriously ill adult patients and their family member caregivers.

“We felt safe there, and everyone there knows you are going through something and they are willing to help,” Linda said.  “There is good interaction with others and that helps everybody emotionally, whether you are talking or listening.”

Dr. Gerber, a former SECU Family House board member, calls it a “priceless” resource for patients and their families.

“In Heather’s case, to be more than four hours from home and have a strong, but fragile, network of family members over three states, Family House provided an instant family and a network to help them through,” Dr. Gerber said.  “Without question it helped them all with the healing process.”

On July 21, 2012, about 60 friends and family members gathered at Heather’s house to celebrate life one year post-transplant.  

The strawberry blonde honoree greeted each guest with a hug, a twinkle in her blue eyes and her trademark smile, which her family said is always with her even on the darkest days.

“She really is unbelievable,” Linda said.  “As sick as she was, as yellow as her skin became from liver failure, Heather showed no fear.  She’s always been excited about life, about going and doing and helping others.  She’s still that way.”

Heather had cheated death before, surviving a horrific car accident in 2005.  

“Then, we had some anxious hours that passed quickly,” recalled Valerie.  “This time, we were on a bigger roller-coaster. While she had the most wonderful and caring doctors and nurses in Chapel Hill, no one could guarantee Heather would make it.  

“God saved her for a reason, to encourage others.  She’s the sunshine in our lives and the sweetest girl in the whole world.”

Blood-thinning and anti-rejection medications—and routine blood tests to monitor their effectiveness—will be Heather’s life-time companions.  She awaits additional test results to find out what’s causing and what can be done about pain in her ankles and knees that makes a wheelchair and a walker new sidekicks, too.  

And Raisin?  

“I haven’t been able to ride him in over a year, but I visit often and he still knows me,” Heather said, in that gaited, smooth way she has of putting people at ease and life in perspective.  

To learn about becoming an organ donor, contact Carolina Donor Services, the federally designated organ procurement organization serving 6.1 million people in 79 counties in North Carolina and Danville, Va. (www.carolinadonorservices.org, 919-489-8404)

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