DARDANELLE — Bailey Craig is a 22-year-old woman with definite goals — to get back to barrel racing, earn her graduate degree and marry her fiance — but her future depends on a lifesaving double-lung transplant.
The Dardanelle woman is on a heart-transplant list, too.
Craig, who still doesn’t have a firm diagnosis for what is attacking her body, is at the University of Alabama at Birmingham Hospital, where she’s been since April 25.
“I hope and pray for a donor, but I also pray for their families,” she said, responding to emailed questions. Cellphone service is poor in the hospital room, said her mother, Amanda, and it takes a team to get Craig up to walk, said her father, Chuck.
Amanda Craig said her daughter is on lists for both double-lung and heart transplants. She is on an extracorporeal membrane oxygenation, or ECMO, machine, which pumps and oxygenates her blood. It is giving her heart and lungs a rest so she will be ready for the transplant. Doctors are hoping for a heart and lungs, but they’ll go ahead with the double-lung transplant, if they are available, her mother said.
“Her lungs are working, but not enough to keep her alive,” she said. “Like the doctor said, ‘It is what it is. It’s not fair. You don’t deserve this, but you have to deal with it. You don’t have a choice.’”
Bailey Craig walks 1,000 feet twice a day because she has to be ready for surgery.
“To think someone will have to die for me to be able to live is something that bothers me,” she said. “I want the family to know that I’ll live my life to the fullest once I get my new lungs and/or heart and lungs.”
Craig was active and healthy until she was 21, when she started having a gamut of symptoms — difficulty breathing, pain in her joints, even a strange rash on her legs around the Fourth of July two years ago while working the fireworks stand she ran in Dardanelle.
“It was like being hit with a brick wall,” she said.
She was an exercise-science major at Arkansas State University-Jonesboro and was in the hospital during part of an internship, and she had to spend part of it with a chest tube and a valve in her side. Despite that, she graduated on her 22nd birthday, Aug. 8, 2014. She was accepted into ASU’s Doctor of Physical Therapy program — one of about 30 out of 800-plus applicants, her mother said.
Craig started going from doctor to doctor and hospital to hospital to find out what was wrong with her.
“I’ve been told numerous times I’m a one-in-a-million case,” she said.
The young woman said she became physically unable to continue her studies at ASU and withdrew from the university in October.
“I was struggling with pain, fatigue and depression from all the stresses of doctor’s visits with no answers,” she said.
About 2 1/2 months ago, Craig went to Baptist Health Medical Center-Little Rock, where she had been before, her father said. She had a spontaneous pneumothoraxes — collapsed lungs or air in the chest cavity.
“She crashed, and they had to put her on a ventilator,” Chuck Craig said. “We thought it was over at that point. The good Lord works in — people say mysterious ways — I say awesome and incredible ways. That’s when UAB sent their private jet up after her.”
Amanda Craig, who is on leave from the business office at River Valley Medical Center in Dardanelle, said her daughter had been diagnosed with rheumatoid arthritis, which has been ruled out, as have many other conditions.
“Right now, I’m at my sixth hospital,” Bailey Craig said, “and I couldn’t tell you how many doctors I’ve seen.” She said doctors have told her that her lungs are acting like she’s had “blunt-force trauma, like a bullet or stab wound.” She said she has fibrosis (thickening, stiff tissue) all over her lungs and has had more spontaneous pneumothoraxes. “They also believe I have an autoimmune disease,” she said.
Craig’s life and her family’s life have been turned upside down, emotionally and financially. Amanda Craig has been at the hospital with her daughter for two months in Alabama, and weeks at a time at Baptist in Little Rock before that. She said her husband makes the seven-hour drive to Birmingham most weekends.
“I don’t even know if I have a job when I get back,” she said. She rents an apartment in Alabama for $870 a month, although she’s only slept there a couple of times. She said her daughter’s fiance, Casey Nickelson, “has been amazing” and stays with her daughter when he can.
Bailey Craig said her fiance has kept her sane.
“Even now, it’s hard for me to believe this is happening to me,” Craig said. “There are days where I break down and cry, and there are days where I feel like I’m holding everyone together,” she said.
“It’s hard,” Amanda Craig said. “I’ve told everybody, it’s kind of weird — surreal. You never thought this would happen to your child. I used to look at people whose children have cancer and say, ‘How do you deal with that?’ Then you do.”
Chuck Craig said his boss at Hodges Heavy Duty in Russellville has been “very wonderful,” but still, he and his family are living on one salary now.
Fundraisers have been held for the family, and the Dardanelle Area Chamber of Commerce is sponsoring the second annual Chocolate Festival from 5-8:30 p.m. Friday at the Dardanelle Community Center. Admission is $5 per person, and vendors will offer a variety of chocolate items. People may vote for the business with the best chocolate.
Also, a bank account for the Craig family has been set up at Chambers Bank in Dardanelle.
“The support of my family, fiance, friends and community has been amazing,” Bailey Craig said. “I’ve seen our community step up in times of need for other families, but I never expected it to happen to me. I also never expected the response.”
Her father said their church, Branded By Christ Cowboy Church in Centerville, “and our whole community has just been awesome, just unbelievably important.”
“Our church and our community have been amazing; there are no words,” Amanda Craig said. “It’s very humbling to know there are that many people who care. We couldn’t have done it without them.”
Bailey Craig said that what she misses the most is being outside and working with her horses. Because her father makes the drive most weekends to see her, she said her brothers, Dalton, 20, and Daniel, 17, shoulder most of the responsibility of taking care of the farm.
“Even thought we bicker all the time, I’m so thankful for them,” she said. “They’ve taken care of my animals with no complaint. I’m so grateful for everything they’ve done, and I couldn’t do enough or say enough to thank them for everything.”
She said the hospital staff is like a family. “I’ve never been to a hospital where everyone is so nice and helpful,” she said.
Craig said that while she was in graduate school, she shadowed an occupational therapist and “fell in love with the profession.” She wants to go back to graduate school someday.
She got engaged in March, and the couple have moved their wedding date twice after she realized her health wasn’t going to let her enjoy her special day. She said the new date is April 16, 2016, at the Barn at Twin Oaks Ranch near Dardanelle.
“I’m so excited; I’ve already bought my wedding dress,” Craig said.
All she wants is a normal life, but she will have to wait.
“I hope and pray for a
successful transplant and recovery,” she said. “I also hope and pray to find a diagnosis, even if it’s after the transplant. To not know what’s going on with your body is a scary thing.”
Senior writer Tammy Keith can be reached at (501) 327-0370 or tkeith@arkansasonline.com.