A Second Chance at Life
Ashlea Jerome can now work out, travel by airplane and walk more than a mile — things she couldn’t do two years ago before she received a heart transplant.
“I couldn’t walk five feet without getting out of breath and turning purple,” Ashlea said.
Ashlea was born with a condition called mitral stenosis — thinning of a heart valve and a hole between the two lower chambers of her heart. Over time her right ventricle grew to be larger than the left. Ashlea had 10 different surgeries during her childhood, including one at age 3 that removed the wall between the lower chambers, making her heart three chambers instead of four.
“As she got older, it couldn’t keep up,” said Ashlea’s mother, Beverly Wood. In March 2004, when Ashlea was 18, doctors told her she needed a transplant.
Ashlea went through a weeklong evaluation to determine if she would be a candidate for transplant. She was officially placed on the transplant list Aug. 12, 2004. Wood marks the anniversaries of their lives by the milestones in Ashlea’s treatment — she remembers dates of diagnoses, surgeries and recoveries.
“You don’t ever forget it,” she said.
On Oct. 11, 2004, Ashlea checked into the Children’s Hospital in St. Louis. The facility is part of the Washington University Medical School and specializes in high-risk heart transplants.
When Ashlea was admitted, she had a serious infection. Within a few days, the problem bumped her to the top of the transplant list. She was next in line for 10 days before a viable matching donor heart became available.
“Seven days before the transplant, I was praying, ‘I don’t want to walk out of here without her,’” Wood said.
On Oct. 23, 2004, the family got word that a matching heart was on its way from Michigan.
“Hearing the helicopter land on the building and knowing that her heart was on it was unbelievable,” Wood said. Donor organs are transported by hospital helicopter because surgeons have a four-hour window to implant the organ into the recipient. As time outside the body increases, the chances for a successful transplant decrease.
Ashlea’s surgery went well and the new heart began beating immediately, but her problems were far from over. The new heart pumped so much stronger that it caused Ashlea’s fragile blood vessels to burst.
“She had a major bleed-out,” Wood said. As a result, Ashlea spent eight days on a ventilator and another seven days on kidney dialysis.
She didn’t get out of bed for almost two weeks following the surgery and her muscles had severely atrophied. All of the complications were a big surprise for Ashlea.
“They made me think I’d feel great immediately,” she said. Instead she felt much worse.
Most of all, she wasn’t prepared for the complex emotions that accompany a heart transplant.
“Waking up knowing that someone else’s heart is beating inside you is just awful,” Ashlea said. The anti-rejection drugs are steroids that wreak havoc with hormones and emotional responses, resulting in a lot of crying. Then there’s the dark reality of what had to happen for the heart to be available. The gravity of it is not lost on Ashlea.
“I knew my donor had to die for me to live,” Ashlea said. In addition to the sadness she feels for the family, Ashlea experiences a guilt that she doubts she will ever shake. Her donor was a 23-year-old Romanian nanny named Laura who was working in Michigan.
“I think about her every day,” Ashlea said. “It’s something I have to live with for the rest of my life.”
After the transplant surgery, Ashlea spent a month and a half in the hospital in St. Louis. In addition to the ventilator and dialysis issues, she developed an infection on the inside of her chest incision. Surgeons had to reopen the wound and leave it open so the interior tissues could heal. As a result, Ashlea’s scar – which begins at the top of her sternum — is more pronounced than it might have been.
“It’s the first thing people notice about me,” she said. “It drives me crazy because it draws attention and then I have to tell the whole story.”
Ashlea admits she is not really comfortable talking about her transplant.
“But I think if I’m telling the story to educate people about organ donation, then I think it is worth telling,” she said.
As of August 2006, a total of 57 Oklahomans were on the waiting list to receive a heart transplant. Nationwide, the waiting list tops 2,870.
Multiple insurance policies and a school fundraiser covered the cost of Ashlea’s transplant.
Ashlea’s transplant surgery happened during the fall of her senior year at Moore High School. She tried several times to go back to school, but changes in her white blood cell count and complications kept her home. But with diligence on both her part and her teachers’ part – particularly Miss Johnston – Ashlea graduated in May 2005. She plans to start classes at Oklahoma City Community College in the spring and study child psychology.
Since the transplant, Ashlea and her family moved to the Edmond area. She’s been back in the hospital four times for various complications. But none has been related to rejection of the heart. Ashlea takes anti-rejection medication twice a day and will be on it for the rest of her life.
She spends a lot of time e-mailing other teenagers who are waiting for transplants.
“It’s easier to learn from someone who has been there what happens to you emotionally and physically after the transplant,” Ashlea said. “I’ve got a lot to talk about with other kids.”