Community support and medical advancement help Melissa Bernhisel find success

They couldn’t have done it alone.

Across Cowley, in medical cabinets in house after house, there still lies stashes of the drug Creon. The body produces a variety of enzymes to help all of us to digest food, but for those who fight cystic fibrosis, those enzymes never make it out of the pancreas. They’re blocked by a wall of phlegm. Creon is a way to introduce more enzymes into the system, allowing for digestion to happen.

But there aren’t multiple cystic fibrosis patients in Cowley, there’s just Melissa Bernhisel, and before she went to college, nearly the entire community was stocked up with the medication she needed. 

“I still get calls today,” Melissa’s mother Sally Bernhisel said. “I couldn’t tell you how many homes in Cowley I had her enzyme pills at. When we left Utah we had so many people calling. We have stashes of them everywhere.”

When Melissa was born, Sally and John knew within ten days she had cystic fibrosis, due to standard testing conducted after she was born. John quickly looked up cystic fibrosis in the encyclopedia.

The life expectancy he saw was 14 years.

This past month, Melissa Bernhisel graduated from Utah State, far past the age of 14. She’s already worked an internship in Seattle and is primed to start a full-time position at Deloitte’s Seattle Office. The story of how she got there is one of personal grit, medical achievement and community support.

“Without a community that loved and cared for her, I don’t know if we would be where we are today,” Sally said.

It’s known as a blind disease. As in, no one can see the fight Melissa has to put in every day. 

“Especially in a small community, people have seen me get hospitalized, they’ve seen me get sick and at my lows, but also on days when I’m having a good day, I still don’t feel great,” Melissa said.

Cystic fibrosis is a disease that affects not only the digestive system but primarily the lungs. The body produces thick mucus that clogs the lungs and obstructs the pancreas. 

It’s almost like an asthma attack or an allergic reaction -- but in slow motion, Melissa said. Instead of the lungs closing up within minutes it takes months of mucus slowly building up, decreasing lung function bit by bit, one day at a time. 

“For me, it’s so slow, it’s very progressive, so it’s not like
one day I’m fine and then the next day I can’t breathe,” Melissa said. “It’s like my body slowly gets used to it.”

Melissa was first hospitalized in the fourth grade as the mucus clogged up her lungs. It was a reality she would get used to as she got older. According to John, she’s been hospitalized every year since. 

“I would progressively get worse and then I’d be hospitalized, and then my high (lung function) progressively got lower,” Melissa said. “So after I was hospitalized, I could never get back to baseline, and so, through middle school and high school, my lung function progressively got lower overall.”

COVID-19 has made social distancing and quarantining a present reality for the majority, but for Melissa, what are for most new constraints are familiar to her. With lung function diminished, Melissa was increasingly vulnerable
to disease. A cold or a flu could be devastating. 

“There were several times in elementary or middle school when the teacher or the school nurse would call my mom and say, ‘you know, there’s a lot of sickness and you might want to keep Melissa home from school,’” Melissa said. “I do remember missing school quite a bit, and I remember my mom having to teach me different lessons and stuff.”

Melissa’s health was a personal struggle first and foremost, but it was also a community effort. 

“She had extra nutrition at school. School secretaries would be her best friend. They would give her meds. She has super good memories of Lesley Boardman and Brenda Brost. They were personal friends. They made Melissa theirs.”

But it went far beyond just school. The whole community would make an extra effort to keep their distance if someone had a runny nose or a cough. It wasn’t unusual for pockets to form in church, keeping Melissa safe. Every year, when she was hospitalized, she would receive gifts. 

Friends, family and neighbors would bring the family food. The local Shriners even helped the family pay for Melissa’s medical expenses. 

While Melissa was in high school, Rocky Mountain High School organized what were known as the purple games, raising funds to donate to the Cystic Fibrosis Foundation

It’s that effort, John said, that the family remains grateful for as Melissa continues to advance.

“I never thought she would graduate college,” John said.

Melissa has two more people to thank within the community, her parents, John and Sally, who never really treated her any differently than the rest of her siblings.

“We used to go backpacking when I was younger, and I still went,” Bernhisel said. “I still had to clean the bathroom. I still had to rake leaves.”

New Medication

What community support has allowed for is medical advancement. 

In December of 2019, after a long wait, Melissa Bernhisel received her first prescription of Trikafta. She was the first in the entire state of Wyoming to be approved. She has the date she first received it still circled in her calendar. 

Trikafta, a combination of three different medications, is a groundbreaking development for patients with cystic fibrosis, Melissa said. Medications that came before it allowed
Melissa to stabilize and retain lung function, but Trikafta has allowed her to improve it. 

“So basically there’s two steps. The protein channels that allow salt to pass in and out of them, those protein channels are essentially closed, so they don’t allow salt to pass in and out,” Melissa said. “So medications have to open the protein channel and bring those salts to the surface of the cell. Other medications just weren’t as effective at bringing them to the surface.”

John said it’s hard to understate how huge of a development the medication is for those with cystic fibrosis.

“We feel like the progression of medications since she’s been alive has been miraculous,” John said. “There’s been a steady improvement, but this is a game changer. Nothing has even been close.”

That kind of improvement hasn’t always seemed feasible to the family, Bernhisel said. 

“When she was born, 23 years ago, they pulled us into an office and started talking about viruses going into cells and taking information, and it felt like they were talking science fiction to us,” John said. “We had a hard time believing them. But as we researched a little bit, we felt hopeful. Advancement has taken a much different path, but in her lifetime we have watched it progress.

“When she was young, we were so grateful for a little pill that would help her digestion. Now they’re making a pill that’s changing everything.”

Melissa said two consecutive doctor appointments have shown an increase in lung function. She now has the highest lung function she’s had since she was a freshman in high school. 

It’s been a game-changer for Melissa, but she was quick to point out that others have even more severe cases of cystic fibrosis, and even with cystic fibrosis, she has been blessed. She had to wait in line to receive Trikafta, because many, without it, faced lung transplants. 

“I have been relatively healthy so I have been able to go to college and have an internship and live a relatively normal life,” Melissa said. “For a lot of people, their life is just full-time taking care of their health. I would say the hardest part is that there are people in the CF community who have died and were never able to take this drug. It’s humbling to know that I live in America where I have access to this drug, but also that I live at a time when this drug came out.”

Looking forward 

COVID-19 has turned most of life upside down, but it’s especially true for Melissa, who has been in complete quarantine for months now. She still goes to classes, working on the final steps to her master’s degree, but aside from that, most of her social life has come to a complete stop. Her groceries come from Walmart pick-ups. She hasn’t been to a store since the beginning of March. 

John and Sally watched Melissa graduate with her bachelor’s through webcam. In just a few months, she’ll wrap up the final classes needed for her master’s degree. A dual program at Utah State has allowed her to earn both of them nearly at the same time. 

The pandemic has been an additional struggle, but Melissa is well-prepared for that.

“Luckily, I am used to things being thrown my way making school and life more difficult,” Melissa said. “I have become accustomed to adapting to the circumstances and facing them head on.”

“…Ninety-five percent of the time, I am still doing what a ‘normal’ 23-year-old would be doing,” she added.

For John and Sally, all they see today is potential.

“Her future is really bright,” John said. “The graduation she just went through, it creates hope for the future.”

The Bernhisels have come a long way from when John opened that encyclopedia 23 years ago. 

By Ryan Fitzmaurice