18-year-old hopeful as she waits for double-lung transplant
By Phyllis Moore
Published in News on August 1, 2018 5:50 AM
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News-Argus/CASEY MOZINGO
Emily Peters, 18, and her sister Sarah, 11, prepare for Emily to be away for several months while she waits for and undergoes a double-lung transplant. Emily is taking Sarah's stuffed llama and Sarah is keeping Emily's favorite blanket as a way to keep each other close during the process.
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News-Argus/CASEY MOZINGO
Some of Emily's favorite snacks, coloring books to keep her entertained and necessities are piled onto the Peterses' table as she and her mother, Meredith, prepare for their trip to Chapel Hill where they will wait for a donor.
Emily Peters was diagnosed with cystic fibrosis at 4 months old but to the untrained eye, was a typical kid growing up.
She played basketball and soccer, was a cheerleader and rode bikes and "swam until my fingers turned to prunes," she said.
As she became a teenager, health issues mounted, requiring several hospitalizations, a port-a-cath, which draws blood and allows intravenous treatments, and a "superbug" nestling in her lungs.
For a portion of her high school years, she was accompanied around the halls by sidekick "Pablo the oxygen concentrator," as she required the breathing apparatus full time.
Then on Jan. 23, 18 days after her 18th birthday, she heard the dreaded words in the doctor's office, "We're out of options."
The next step will be a transplant. A double-lung transplant.
"It's been a long journey," said her mom, Meredith Aycock Peters. "She was born with a heart murmur and just wasn't gaining weight. They kept a very close eye on it."
Her firstborn failed to thrive, but Goldsboro Pediatrics was on top of it, she said.
"I credit Dr. (David) Tayloe with saving her life," said the patient advocate at Wayne UNC. "She spent the first year of her life pretty much in the hospital."
For the bulk of her childhood, her parents made sure she had a life as normal as possible, Emily wrote in a blog she recently started.
"Honestly, if I were out in public you wouldn't have known I was sick unless you followed me home and saw the hours of treatments, handfuls of pills, heard the coughing fits and looked at the many doctors appointments on the calendar," she wrote.
The past few years have been more difficult, she admits. They worsened around the time she turned 16.
"I just felt terrible," she explained. "I had no energy, trouble breathing.
"Back in September, I was put on oxygen as needed at night."
At Christmastime, that was upped to full time, her mother said.
So during that ominous doctor visit, turns out both had a feeling of what they would hear.
"I think when the doctor came in and we had that conversation, I think I knew and the doctor knew," Meredith said.
"I knew," Emily said softly.
"I posed the question -- is it time?" Meredith explained.
Emily has not felt well in recent months but was able to participate in graduation from Wayne School of Engineering.
She has been accepted to attend Meredith College but has deferred for a year in anticipation of the double-lung transplant surgery.
Their time has been spent preparing for that day.
"She's done all the testing, she's had the heart cath, every test that can be done in the weeks leading up to it," Meredith explained of the extensive preparation that comes with such an event.
"Now it's just waiting on the phone call."
She and her daughter traveled to Chapel Hill last week for one of the routine visits, fully expecting her to be hospitalized. She was.
In a Facebook post, she summed it up by saying, "checkup turned to antibiotics to kick a cough."
The youth's spirits have been bolstered by her family's support, which also includes younger sister Sarah, 11, and dad Mike. Some in the community may also know her grandfather, Wayne County Commissioner Wayne Aycock.
Of course, if you ask her to describe herself to anyone who hasn't met her, she needs clarification before responding.
"Are we talking about steroid Emily?" she asked.
"They're two completely different people," her mom explained.
Seems "Steroid Emily" can have some anger and cry for no reason. It is in stark contrast to the daughter she knows and loves.
"Non-steroid Emily," she said, is "very sweet, very compassionate, very loving and very giving. She can be snarky at times."
The hardest thing as a parent has been watching her daughter struggle to breathe, especially during a coughing spell.
Now that is rivaled by the upcoming surgery and the unknown of how all that will play out, she says.
The transplant process will require them to stay in Chapel Hill for three months during the recovery process.
Coupled with that will be lifestyle changes -- Emily won't be able to drive for six months, can't eat out in a restaurant for a while and then "never eat at a buffet again."
All that, though, is a small price to pay for a renewed lease on life.
It has made Emily even more passionate about an organ donation. Just like her mom is.
"I think because of the field I'm in -- I used to work in the emergency department -- I've always been a huge proponent of organ donation. The kids grew up hearing about it," Meredith said, rattling off some of the statistics. "One person can save up to eight lives. You can't take them (organs) with you.
"If you just read some of these stories, they're just amazing."
"You have the ability to save someone's life," Emily added. "It's just amazing that you can do that."
The flip side of the coin, however, evokes some mixed feelings.
The thought of the donor never leaves her mind, Emily says.
"I feel they're going to be such a huge part of my life," she said.
"Sometimes it's hard to pray for new lungs," her mother said. "It's a little hard to grasp. That's what you're hoping and wishing for, but someone else will lose their life."
The surgery is not something the women take for granted, even though it will provide things that most others could take for granted.
Like being able to take a deep breath. Or putting on a shirt without having to navigate past oxygen tubes.
"Just to be able to breathe, to be able to take a walk up a flight of stairs and to not have to worry every time she goes somewhere," her mother said. "Just to be able to let her live her life."
To follow Emily's journey -- or to purchase a T-shirt or even contribute to their medical expenses -- visit lungsforem.com.
Emily wrote on her site Friday that she learned through her transplant coordinator that several offers had been made but they weren't "perfect matches or 'good enough.'" Still, the possibility of a possible transplant was exciting, since she has only been on the list for three weeks, she wrote.