Breathe in. Breathe out.
One of life’s easiest things to do, right? The average person takes 23,040 breaths per day without a thought.
Not Ashleigh. She is anything but average and many would say she’s extraordinary. But for Ashleigh, breathing is one of the most difficult things she does.
A junior Biblical and Theological Studies major at North Central University, Ashleigh McIntyre has Cystic Fibrosis, a hereditary disorder causing the production of abnormally thick mucus, leading to the blockage of the pancreatic ducts, intestines, and bronchi, and often resulting in respiratory infection. (Dictionary.com)
Ashleigh explains it simply: “My lungs don’t function as well as normal. The mucus in my lungs is like syrup and hard to get rid of. Instead of getting rid of it, it just resides in my lungs,” which leads to infections. “Any time I get sick I have to go into the hospital for IV antibiotics for a minimum of two weeks.”
Last November, Ashleigh got sick, but the normal courses of antibiotics didn’t even restore her to her “normal,” which having her lungs function at about 30 percent. “My current lung function is between 24 and 28 percent,” she said.
Since the recent illness she is now dependent on an oxygen tank to supplement her breathing, and she now awaits a double lung transplant.
A different kind of normal
Cystic Fibrosis doesn’t just affect Ashleigh’s breathing; it causes every system in her body to have to work overtime to compensate for the lack of oxygen flowing through her system. She eats constantly and at 95 pounds has difficulty maintaining her weight without it going down.
Her daily routine needs to account for up to three hours a day of treatments, 40 pills a day, organizing medicine…not exactly the life of a typical college student.
But she is quick to share that living with CF has always been her normal. “Growing up [in Shreveport, Louisiana], everybody I grew up with knew it was normal. Going into the hospital was normal-we’d have hospital parties and have sleepovers in the hospital. I have never known any different.”
Journey to Minnesota
Ashleigh started her college career at Louisiana State University – Shreveport, where she was majoring in psychology. “I knew I was supposed to go into ministry,” she said, but she held back until “I finally felt like I needed to get into ministry.” Raised in the Assemblies of God, her journey to North Central started with an internet search. “I typed in ‘AG Bible colleges’ and North Central popped up.”
The search had an added dimension because she also needed to do medical research.
“When was looking for schools, I had three specific stipulations I gave God,” Ashleigh said with a smile. One was making sure there would be someone who could take over her worship leader position with the youth group she served. One was finances, “My mom is a single mom of four kids; she doesn’t help us with school because she can’t.” And one was that there had to be a CF center close by.
“That was obviously the big one,” Ashleigh said. And in this, Minneapolis became a big answer to her “stipulation.”
“Not only was there a CF center right across the river [at the University of Minnesota], but I found out it was one of the best in the country—it’s one thousand times better than my center back home!” Ashleigh exclaimed.
God also provided someone to serve the youth group, and grants and scholarships to fund her education, so Ashleigh moved to Minneapolis and started attending North Central in fall 2015.
Dependent on community
Her first two years at NCU were pretty typical: first year—good and a little homesick, second year—more involved by serving as a Resident Assistant (RA) in Miller Hall. This year she is thrilled to serve as the prayer coordinator for Praise Gathering, a weekly evening worship experience that brings students from NCU and other local colleges together.
The dramatic shift in her health in the past three months has moved Ashleigh to a somewhat uncomfortable dependence upon others, but she is amazed at the support she’s received. “I’ve always been independent,” Ashleigh reflected. “This having to rely on people thing is new to me. I’m not one to always complain. If I always said when I wasn’t feeling good I would say it every day, and that’s just depressing.”
But now having an oxygen tank slung over her shoulder and her energy level diminished, she can’t keep it from her friends. “I’m so appreciative of my friends,” Ashleigh said emphatically. “I wish there was some way to express to them how thankful I am. I have friends who will carry medicine boxes from the mail room, friends who drive me to appointments, friends who visit me in the hospital. I have a friend who does my laundry for me, and friends who are promoting my Go Fund Me page…I didn’t even have to ask.”
Ashleigh said her professors have also been understanding and willing to help in any way. “Everything has exceeded expectation.” She was humbled and grateful when President Scott Hagan announced in a recent chapel service that the Friday offering would be for Ashleigh’s transplant fund-and students contributed more than $1,000.
Facing the transplant process is emotional on many levels, and finances are a real concern. Beyond the costs of medical care, there will be rent costs for her mother to come up and stay for three months in the critical period after the transplant when 24/7 monitoring is vital. Depending on when the transplant happens, it may mean three months without income for her mom, so they are hoping to have funds on hand to cover that.
She’s grateful to live in the era of crowdfunding and has set up a GoFundMe page.
Ashleigh also had a custom-designed T-shirt made to sell as a fundraiser. “I love people donating but thought it would be cool to have something to give back,” she said. The design is a pair of lungs, with 65 roses on one side-a nod to the way children with CF often pronounce the name of the illness, “Sixty-five roses.” The t-shirt is offered for a limited time, just until Feb. 5, 2018.
A talented writer, Ashleigh has been blogging about this journey to transplant on her blog entitled, “The Good Life—Blessed, Loved, Thankful.”
Promise and process
Physicians at the U of M are serving as Ashleigh’s guides toward her anticipated double lung transplant. She went through an intense week of evaluation at Christmas time to confirm she was a good transplant candidate, and on January 10 she was placed on the UNOS (United Network for Organ Sharing) transplant list.
“I don’t know what it feels like to take a deep breath,” Ashleigh said, anticipating the transplant, “just because I have never been able to.”
As much as she looks forward to breathing, Ashleigh is honest about some of the bigger questions of life post-transplant.
“CF has been so much a part of my life, something that has raised me, shaped my point of view, given me a sight I have that others don’t,” she reflected. “That’s a big thing I don’t want to lose just because I have a transplant. It’s been 24 years-it’s going to be different!”
“Something I have been learning is about possessing the promises of God. He is teaching me you need to rest in this process, and learn in this process, and now see the process start to grow into the promise. It is more about the process and having to wait. I’ve learned more than if it [healing] had just happened.”
Learn more about Ashleigh’s fundraisers: