Coeur d’Alene woman with cystic fibrosis prepares for double lung transplant

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LOREN BENOIT/Press Jennifer McKenna, 41, of Coeur d’Alene, has lived with cystic fibrosis her whole life and needs to have a double lung transplant. She will temporarily move to North Carolina in February as she begins the process to find an organ match. Seated next to her is her husband, Corey.

Standing on the precipice of the unknown, Jennifer and Corey McKenna are preparing to face one of the biggest tests of their lives.

Jen, who was born with cystic fibrosis, is about a month away from beginning the process of a double lung transplant.

About two years ago, when doctors first told her that a transplant was something to seriously consider, her first reaction was natural.

"Fear," Jen said Tuesday, seated next to husband Corey in their Coeur d'Alene home.

"Oh yeah. I was scared," she said. "You know how you have the rational side of your brain to say, ‘You know this, you knew this, why are you surprised?’ But then the other part of me that goes, ‘But I never thought reality would reach me. I didn’t think that would touch me.’ It actually took me probably a month to share with my parents that that conversation was started, and we’re pretty open with each other, just because I had to manage my reactions and my feelings.

"It took me a while to be able to share that this could happen because I was afraid of the questions," she said. "I didn’t want to hear the horror stories and the statistics."

Cystic fibrosis, or CF, is a progressive, genetic disorder that causes mucus to build up in the lungs and other organs. Jen said she was fortunate to have a "mild manifestation" of CF that didn't impact her too much in her youth — she was able to play with friends and enjoy archery in high school.

She had to take pills to help her absorb food before she could go to lunch, she recalled.

"Sometimes kids would look at me weird,” she said. "I had to detour to the office, and I was a hungry kid. But small troubles, small troubles."

In 2000, when Jen came down with bronchitis, one of her doctors discovered she had a collapsed lung.

"I didn't even know it," she said. "I had been jogging and everything, I was just short of breath and didn’t know why."

A nontuberculous mycobacteria (NTM) was found in a mucus plug that was blocking her oxygen flow. She was quarantined by the local health department because the bacteria belonged to the tuberculosis family and officials weren't sure what it was.

"I missed my college finals, I was off of work, and I was single and a college student and had an apartment to pay for," she said. "I missed a week of work until they called me and said, 'It’s not tuberculosis, go ahead and do what you want to do now.'"

This NTM still lingers in Jen's lungs and tissues; she said everyone gets this bacteria, but she was unable to fight it off because of the CF.

Shortly after she and Corey married in 2005, she got sick and had her first long hospital stay, when she would meet an infectious disease specialist who would relay the news that this infection would never go away.

"It was a slow-growing, slow-moving bacteria,” Jen said. “It sneaks up."

Corey, an avid triathlete and Ironman competitor, encouraged Jen to keep running and not let the CF get the best of her. "Just run and walk,” he told her.

"I did that for a few years,” Jen said. "The longest thing I did was an 18-mile run in Death Valley. It was really, really cool. And then a 21-mile in Big Sur."

Originally from California, Jen, 41, and Corey, 48, moved to Coeur d'Alene seven years ago after falling in love with the area during Ironman competitions. They loved the clean air, which Corey knew would improve Jen's quality of life.

"When we got married, we lived in one of the smoggiest cities in the United States," he said. "My goal was always to get her out of there whenever we had the opportunity to do so."

Through time, Jen's CF combined with the infection have made her condition worse. She hasn't worked for more than a year, even though she loved working at Center Target Sports and before that, Union Gospel Mission. She has no energy, her medication regimen eats half her day and the tubes that deliver oxygen from a tank to her nose seem so out of place for someone so young.

The upcoming double lung transplant, which could cost up to $600,000, is necessary to restore Jen's vitality and give her another chance at life.

“The hardest thing for me is to see her struggle. In a sort of way, it breaks my heart that she struggles so much and that I wish I could just fix it," Corey said. "I am scared, of course … The longest we’ve ever been separated is a couple of weeks, so this will be a test.

"It’ll be hard,” he said. “I'd be lying if I wasn’t scared or worried about it. But I know that this is going to increase her quality of life."

Jen will be temporarily moving close to the University of North Carolina, Chapel Hill next month to begin the process of pre-treatment, listing for a donor match and ultimately the transplant. This opportunity came after being denied by a few other medical facilities because of her NTM, but UNC doctors were confident they could help her after meeting for consultation last month.

"She could be on the list for one day, it could be one year,” Corey said. “Average wait time at UNC is two to four months, and they have a super high success rate, close to 97 percent for living beyond the first year.”

For years, the McKennas have prayed with their community at Coeur d'Alene Bible Church for healing.

"We didn’t know what that was going to look like, and then all of a sudden we have this option of, ‘Well, why don’t we put a new set of lungs in you?’" Corey said. "That is a huge answer to prayer … Technically, we can’t cure the CF because it’s genetic, but what blew us away in our conversations with doctors in North Carolina, when her new lungs get put in, they do not develop CF because they're the donor’s lungs."

Jen's mom, Virginia Williams, will be traveling from California to be her daughter's caregiver and support when Corey, a Central Washington University professor, can't be by her side.

"We're feeling excited about it for her," Virginia said in a phone conversation Tuesday afternoon. "We're very confident this is going to be OK. God has given us the peace and comfort to know this is going to be OK."

The Press will be keeping up with Jen and family as she goes through this process. If all goes well, she could be recovered and on her way home in five to eight months.

"One of my goals is to walk a marathon, hike, kayak, fish, very North Idaho stuff," she said with her big smile. "Shoot my gun, shoot my bow."

She also wants to go back to school to be a counselor, and volunteer to "help people who have been in our situation, people who have found themselves in a moment of weakness in their lives and need help."

Corey is looking forward to hiking Canfield Mountain with his wife and going on more adventures together, rather than just showing her phone photos of his outings.

"Being able to do those things together without having to cart the oxygen and without the box of meds will be amazing," he said. "We can't wait. It's like, 'Can we do this tomorrow?' We know it's a long road ahead."

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