JOPLIN, Mo. (AP) - Caryn Durbin has gotten plenty of birthday presents in her lifetime, but picking the best one is easy.
The Joplin resident awoke at Barnes Jewish Hospital in St. Louis on Nov. 14, her 30th birthday, after a bilateral lung transplant surgery that began the day before to find she had received several gifts in one.
With the new pair of lungs she desperately needed, Durbin gained the ability to sit and hold a normal conversation without losing her breath. She can now - or soon, anyway - shed the oxygen tanks and tubes she says she’s felt “strapped” to for so long.
She will finally be able to run and play with her 10-year-old daughter, Bailey. Durbin wants to eventually go back to work. She may even resume her pursuit of a college degree, a goal she admittedly used to feel little reason to attain considering the average life expectancy of a person born with cystic fibrosis: just 37 years.
“You live your life and, I mean, you kind of live it in a denial with a chronic illness of the fact that you’re really going to plummet to a point where you need a surgery like that,” Durbin told The Joplin Globe (https://bit.ly/2iaD67F ).
Cystic fibrosis is caused by the inheritance of two copies of a defective gene, one from each parent. Both parents must carry the defect to pass it on to their children. When both parents are carriers of the defective gene, as Durbin’s parents, Ron and Debbie, are, there is a 25 percent chance of the child contracting the disease in each pregnancy.
Defying the odds, Durbin and both of her siblings, Josh Durbin, 25, and Trisha O’Dell, 35, have battled cystic fibrosis since birth.
“I can remember being 10 years old; that was like the last time that I really got mad about having it,” Caryn Durbin said. “I shut myself in the stairwell at our house and started bawling and asking God why I had to have CF.”
Since then, Durbin said her faith has shaped her attitude into a more positive one.
“Growing up, you deal with a lot of dark stuff early,” she said. “But I have wonderful grandparents; my grandpa is a preacher, and grandma plays the piano in church. They’ve been, my whole family has just instilled a lot of faith.”
Cystic fibrosis causes a thick buildup of mucus in the lungs, pancreas and other organs. The mucus blocks airways in the lungs, which can lead to bacteria becoming trapped, causing infections and other damage. Mucus in the pancreas keeps the organ from releasing digestive enzymes that help the body break down food and take in nutrients.
“These kids have all three fought with work-related job loss because of their illness,” Ron Durbin said. “It makes you angry, you know, but you understand you can’t have people on the job getting coughing fits. Especially in public service, restaurants, stuff like that.”
Each case of cystic fibrosis is at least slightly different. Caryn Durbin said her siblings’ more severe symptoms have been sinus and digestive issues. Both have also had respiratory complications, but Caryn’s have been the most advanced.
“You either have somebody clap on you and help just move and shift the mucus from the walls, or there’s a therapy vest that you put on and it just shakes you,” she said. “So that came out when I was like 10, but before that, (my mom) did it all on all three of us. Just beating us 30 minutes each, twice a day.”
“I took out a little bit of anger,” Debbie Durbin joked.
Debbie said caring for her children and managing their shared disease is all she’s ever known. That familiarity has continued into her kids’ adulthood, as Caryn asked her to be her assigned caregiver as she went through the process of preparing for and recovering from her transplant surgery, attending consultations, carrying oxygen tanks and traveling with her to St. Louis multiple times.
Debbie temporarily resigned from her job at Teleperformance in Joplin to become Caryn’s full-time caregiver.
“You can owe me dinner,” Debbie said, teasing her daughter.
“I owe her my life,” Caryn responded.
Caryn Durbin was forced to quit her job in January because of declining lung function; she hovered around 30 percent of normal function for almost 10 years. She began exploring the possibility of a transplant in March.
“You want to live with your lungs as long as you can because there’s fear of rejection, so I was just trying to stick it out, but I just couldn’t do it anymore,” she said. “I hated being off work, I hated just everything about it. I can’t explain it.”
In October, she was hospitalized when her lung function dropped to 15 percent. After months of preparations and screenings to make sure she met the numerous health requirements for transplant recipients, Durbin was placed on the donor list on Nov. 2.
“Obviously, when I got listed I was excited, but had months of anxiety leading up to all the stuff you had to do to get on the list,” she said. “My anxiety was horrible. I couldn’t even leave my house, just, obviously, afraid of dying. And I hadn’t gotten to talk to my daughter about it yet.”
Durbin had finally been put on the hospital’s list of patients waiting for transplants, but she remained in a dire state of need, requiring treatment and oxygen to maintain lung function of just 24 percent.
The call came just 10 days later, but just in time.
“That morning, we were sitting there talking, and she was like, ‘Mom, I can’t do this anymore.’ She goes, ‘I’m just so sick of feeling this way.’ She just was not feeling good,” Debbie Durbin said. “And she was like, ‘If I don’t get these lungs soon, I’m not going to make it.’ And lo and behold, she gets the call that evening.”
The call interrupted plans for the family celebration of Caryn’s birthday on Saturday, Nov. 12.
“My phone rang and it was ‘unknown,’ and I just knew that it was Barnes,” Caryn said. “There was no doubt in my mind. So I answered it, I let it ring for a second and then I answered it. And it was one of the coordinators. She said, ‘Hey, Caryn, this is Beth. We’ve got a pair of lungs if you want ‘em.’ And I was just like, ‘Are you serious?’ You know? And then at that point, all the fear was gone.”
Less than two weeks after being listed, Caryn had her new lungs.
“For me, (it was) a lot of fear,” Ron Durbin said. “And then the relief that here we knew she was going to a hospital that we knew she was going to be in good hands in. They’ve done, I understand, somewhere around 700 successful lung transplants at Barnes Jewish, so we were definitely comfortable with where she was going to get the care, but still a lot of worrying. It’s very serious surgery.”
Durbin is in the thick of an estimated 12-week recovery, including pulmonary rehabilitation for an hour Monday through Friday and lab tests and X-rays at least once a week. She and her mother have been living in St. Louis since before the surgery and will likely be there until February.
Last weekend, doctors gave her a temporary respite from what she calls the “concrete jungle.” Caryn and Debbie got to return home on Dec. 15 and stay through the weekend. The family took advantage, putting together a Christmas celebration at Caryn’s home.
“It’s awesome,” Ron Durbin said of celebrating Christmas as a family in Joplin, rather than nearly 300 miles away. “But her getting her new lungs was beyond any gift that we’ll see here.”
The Durbin Christmas party looked like any other; family gathered for food, caught up on life’s happenings and exchanged gifts. Both of Caryn’s siblings and parents were there, as were daughter Bailey’s father and stepmother, Nate and Tiffany Artinger. The three have remained close even after Nate and Caryn’s relationship ended. Tiffany Artinger is “like a sister,” Durbin said.
“It was the first woman that (Nate) had ever been with that I could tell was genuinely interested in my daughter,” Durbin said. “And that’s what I care about.”
The Artingers have made multiple trips to St. Louis so Bailey could see her mother while she recovers.
Just as the transplant immediately gave Caryn a favorite gift, Bailey is certain about the best thing to come from this Christmas - even better than a Kansas City Chiefs-themed Elf on a Shelf she was thrilled to open at the family Christmas party.
“(For) her to play with me,” Bailey said of her mother. “Play games outside and run.”
Durbin knows her battle may not be over. There is no cure for cystic fibrosis, so Durbin will live knowing she may eventually need another transplant of her lungs or another organ. The medications she is on to prevent her body from rejecting her new lungs can also cause cancer, she said.
“I guess I just take it one day at a time,” she said. “And I have faith in the Lord and whatever he wants, which so far has been really great, because I could’ve been taken quite a few times. He’s not done with me. He’s got a job for me to do, and I don’t know what that is.”
“Right now it’s to breathe,” Debbie Durbin told her daughter.
Information from: The Joplin (Mo.) Globe, https://www.joplinglobe.com
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