November 26, 2012

Saranac woman becomes a 46er - with CF


---- — PLATTSBURGH — Climbing all the Adirondacks’s highest peaks is an accomplishment, but being a newly inducted 46er is not what makes Nicole Matthews stand out.

Matthews, 36, of Saranac, did it with cystic fibrosis, a disease that makes even normal breathing difficult.

Cystic fibrosis, an inherited, chronic disease that affects the lungs and digestive system, is usually diagnosed at birth, according to the Cystic Fibrosis Foundation. The disease is caused by a defective gene and its protein product, which cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections and obstructs the pancreas, keeping natural enzymes from helping the body break down and absorb food.

But despite having cystic fibrosis, Matthews runs, bikes, works out and hikes. A few years ago, she decided that she wanted to become a 46er. This is no small feat considering a few of the symptoms of cystic fibrosis include persistent coughing, frequent lung infections, and wheezing or shortness of breath.

And while the life expectancy for a person with cystic fibrosis has been improving, throughout her childhood, Matthews’s family was told she would die young. But that hasn’t stopped her from pushing the envelope, keeping up a hectic lifestyle and being more athletic than the average person.

On a typical morning, Matthews is up by 4:15 a.m. for a breathing treatment, followed by a workout. She usually works out six days a week. Matthews works two jobs and also has custody of her nephew. The breathing treatments are repeated two to three times per day, and Matthews has to be vigilant about her diet since her cystic fibrosis has caused her to become diabetic.

“I work very hard to feel healthy,” Matthews said. “I think this is the key to living a long life for me. Mentally, I think this is about not allowing CF to take more than it already has from my life.”

She has the support of her doctors as well. They are impressed by her dedication and believe it is the reason she is doing so well, Matthews said. They encourage her to continue her routine.

Her family, of course, worries about her.

“When I first started this, they asked, ‘Why do you have to do this?’” Matthews said. 

But as she continued, they questioned her less frequently. Her family was even waiting for Matthews at the bottom of her last peak with signs. 

“They were proud and excited,” Matthews said. 

She said she continues to push herself for their benefit.

“I do this as a reassurance to my family that I am fighting as hard as I can against CF so they don’t have to lose me,” Matthews said. “I fear what will happen if I don’t keep pushing myself.”

Her fear stems from the fact that, despite Matthews’s best efforts, her lungs continue to fail. Seven years ago, she had 90 percent lung capacity. That has dropped to about 50 percent. In order to be considered for a lung transplant, she needs to be below 40 percent. Support from those around her is what keeps her going. One of her biggest supporters is Sue Coonrod, her hiking partner. 

“There were many peaks she (Coonrod) could have done faster, but she went at my pace,” Matthews said.

“She was an amazing partner — she challenges me both physically and mentally. There were times when I felt that there was no way I could do this and she would ask, ‘Do you want to win or do you want the CF to win?’”

There were many times when Matthews would bring a mini nebulizer on her hikes so she could stop along the way to do breathing treatments. Still, there have been setbacks.

Matthews was hospitalized toward the end of their hiking goal, but Coonrod waited until Matthews was well enough before continuing. Determined to finish, Matthews hiked her last two peaks — Ester Mountain and Rocky Peak Ridge — with pneumonia. 

“I’m so blessed to have the friends and family that I do,” Matthews said. “Their messages of support were an inspiration.”

But inspiration can be a two-way street.

“What she has to go through every day to maintain her lungs and her treatments is amazing,” Coonrod said. “She of course has her down moments, but hiking with her has made me a better person.” 

When they first met, Coonrod, 57, said she used to have aches and pains that she associates with aging, but since meeting Matthews, Coonrod has stopped complaining. 

Coonrod started toward her 46er goal when she was in high school and decided to start over a few years ago. She met Matthews through a friend on Facebook and remembers the pair’s first hike together. 

“When she described her CF and her little boy, I was overwhelmed by her fortitude, strength and positive attitude,” Coonrod said.

“She couldn’t see me because I was walking behind her, but there were tears running down my face listening to her story.”

If Conrood was apprehensive about hiking with Matthews and her CF, she soon learned that Matthews knew herself well enough that she would turn back before any medical situations got out of control. But even so, their hikes together were not without some scary moments.

During a double-peak hike, to Conrood’s horror, Matthews started coughing up blood. Apparently this is common for cystic fibrosis, but Conrood was still scared. 

“There were times we had to go so slow for her, and there were times when she didn’t go because she wasn’t well,” Conrood said. “She knew her limitations, but you worry anyway.”

Despite having finished the 46 peaks, Matthews is not done with her conquests. Next on her list is the 14-mile Spartan Beast race, which includes obstacles and a 100-mile bike ride. To Matthews, giving up is not an option. She continues in part for the other cystic fibrosis patients who are too sick to be so active.

“I have so many friends with CF — I’ve lost almost 30 already,” Matthews said. “There are more that are just too sick to be active, so I’ve dedicated a few of my peaks to them.”