After waiting over four years to receive a new pair of lungs, and with the odds against her, Carly Wheeler is now breathing easier and said she feels like she can take on anything — including a biology degree.
Pharmaceutical company Vertex awarded a $5,000 scholarship to Wheeler, 24, of Fairview Heights, for her essay about living with cystic fibrosis. She will attend Southern Illinois University Edwardsville in the fall to focus on genetics and cell biology.
“I decided to study biology, and that probably has to do with a few different reasons,” Carly said. “Growing up I was always around the medical field — I was always in and out of hospitals.”
Cystic fibrosis is a genetic disease that affects how cells produce mucus, and complications from the disease can be life-threatening. For Carly, the mucus in her lungs was thicker than normal, allowing germs and bacteria to stay stuck in her airways, impeding her breathing and overall health.
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Learning about her disease is what motivated her to pursue biology in hopes of making an impact in the field one day.
“I hope to do research with it and help cure a disease, or maybe research big discoveries in genetics. It’s just always fascinated me,” she said.
Diagnosed at 1 month old, Carly’s lungs functioned — with complications — up until she left for college in 2011.
“I went to school at (Southeast Missouri State University) and in October (2011), my lung collapsed,” Carly said.
After leaving school to have her lung re-inflated, Carly healed and returned to campus only for it to collapse again a few weeks later. This time, she underwent surgery to prevent another collapse.
That’s kind of when I decided to stop school because it had become really stressful. That was also the time (doctors) talked to me about getting evaluated for a lung transplant.
Carly Wheeler, lung transplant recipient
“That’s kind of when I decided to stop school because it had become really stressful,” Carly said. “That was also the time (doctors) talked to me about getting evaluated for a lung transplant, so with all of that I thought I’d just take a break and figure it all out.”
In August 2012, Wheeler joined a transplant list and waited a year and a half before receiving a phone call. However, what first seemed to be a promising pair of lungs ended up being a bad match.
“That’s always a possibility, so I knew going into that it could happen, but I had waited so long, and I thought it wouldn’t,” Carly said of the setback.
For a period of time, Carly’s health began to improve, so she made the decision with her doctors to get off the transplant list. Another year and a half passed before Wheeler started getting sick again and went back on the list.
Worried and frustrated, Carly said she tried not to focus on statistics, but sometimes she couldn’t help it.
“I was kind of a hard match. At one point, 98 percent of the donor population wouldn’t work for me,” Carly said. “And I mean, when you hear odds like that, it’s kind of like, ‘OK, will this ever happen?’”
In Illinois, to become an organ donor, you can sign up at organdonor.gov.
Unsettled by the future, Carly said she tried to live each day at a time in what she called her “waiting life” — a life separate from what she would normally be doing if she were healthy and not on a transplant list.
“I fell into this new ‘waiting life’ that I hadn’t really planned on,” Carly said. “I had to find things to do, like find activities to keep me from thinking about ‘I’m on the list; I’m on the list’ all the time.”
For many transplant recipients, this waiting period lasts between six months and a year, Carly said. But her time on the list totaled a few years.
“I just had to make it through and get the transplant to hopefully then go back to doing the things I had planned,” Carly said.
Even her mother, Paula Wheeler, who went through the entire process with Carly, agreed the list was always in the back of her mind, but she was surprised how mentally taxing it was.
“It was a little harder than I expected at first … it’s not like being on call for the weekend.” Paula said. “It was over 1,000 days that she was actually on the list.”
Another year and a half went by before Carly received a call in December 2016 — and this time it was a perfect match.
“There was a lot of anticipation after waiting that long. I don’t know if it was excitement, but it was relief ... it was mostly relief that it was finally her turn,” Paula said.
Since going through with the double-lung transplant, Carly has been recovering for about six months and looks back on the entire experience with appreciation.
“I’ve become a lot more grateful for the selflessness of everyone around me. When you’re younger, you don’t really always realize that,” Carly said.
Supported by not only her family and friends, Carly was also able to lean on people in her church and even members of her hometown of Murphysboro.
There was a lot of anticipation after waiting that long. I don’t know if it was excitement, but it was relief ... it was mostly relief that it was finally her turn.
Paula Wheeler, Carly’s mother
“Everyone in the town was just so supportive, and they’d always ask how I was doing to my family and just cared so much about how I was doing, so that meant a lot,” she said.
Although it was a difficult time, Carly said she’s been able to take some life lessons from it.
“I think I grew a lot in that time, and it seemed like I was doing nothing — it seemed like I was just sitting around waiting, but I definitely wasn’t. I was growing as a person and just learning a lot of stuff about myself,” Carly said.
With literally a second breath of life, Carly said she is also grateful for her new lungs and plans to write to the donor’s family.
“I’ll probably write a letter, but whether they want to respond or contact me is totally up to them,” Wheeler said. “I understand either way, but I just want to at least tell them thank you and how big of an impact it’s had.”
“Vertex is focused on discovering and developing transformative new medicines for people with cystic fibrosis, but our commitment to CF extends far beyond this,” said Vertex spokesperson Chris Stamm. “In addition to our ‘All in for CF Scholarship,’ we have established programs to help people with CF live active lives and support independent basic science and clinical research that may improve the care of people with CF like Carly.”
Gradually getting back to the activities she enjoys, Carly said she likes being outdoors and doing ordinary tasks she couldn’t do before, such as cleaning and grocery shopping.
“I haven’t been this healthy in five to eight years,” she said. “It’s a huge difference — like night and day. I can breathe a lot easier, and I have so much more energy.”
With a thirst for knowledge, Carly said she is excited to go back to school in the fall, contribute to the field of genetics and share her story with others.
“I just look forward to the future and being able to travel and learn new things and help as much as I can,” Carly said.
“Once you go through something like that, you kind of feel like you can take on anything,” she said. “I’m sure there will be hard times in the future, even with my health, but I’m confident I can get through them, or at least give it my best shot.”