BILLINGS - Imagine going through life not knowing how much time you have left. That’s the reality many cystic fibrosis (CF) patients face, but thanks to a new drug, their futures are looking brighter.
It’s something CF doctors are calling a ‘game changer’ — a new drug called Trikafta that’s changing the lives of those living with the genetic disease.
"I started going to the hospital quite a bit. Then it turned into about four times a year, up until December of 2019. That’s when I started Trikafta," said Halee Wyckoff, a Billings woman living with CF, in a recent interview. "Since then, I haven’t been in in a little over four years. My life is completely normal now. I don’t do vest treatments, hardly take any enzymes. Everything’s almost normal besides taking the random pills here and there."
Relying on treatments and medications just to get by. That’s the reality Wyckoff faced every day living with CF until she began taking the new drug.
“It was rough. I was doing four treatments a day and taking over 40 pills a day and just not feeling great," Wyckoff said. "You always felt run down, really junky in the lungs, and just tired all the time."
The genetic disease comes with a long list of impacts.
"They get very thick, sticky viscous secretions that cause chronic infections and damage to the lungs, obstruction of the pancreas that leads to the destruction of the pancreas, and then they have all kinds of GI manifestations,” said Dr. Jeremiah Lysinger, a pediatric pulmonary specialist at Billings Clinic, in a recent interview. "And then it impacts the reproductive tract through the same mechanisms."
According to Wyckoff, Trikafta has changed her life.
"It makes your lungs work better. It helps your digestive system. I went from taking pills every time I ate food to not taking any,” Wyckoff said. "I was one of my doctor’s first people on it, and I think it was like a 5 percent PFT lung function increase, which usually you decrease or stay stable."
Her life expectancy jumped. “It went from 37 (years) and now it’s up in the high 50s," Wyckoff said.
A mother of one with another on the way, now shifting her focus to her children's futures.
"I knew my kid was going to have a 50% chance of having CF, but he seemed so healthy because Trikafta was still in his system," Wyckoff explained.
Wyckoff knew her child, Logan, had a 50% chance of inheriting the disease. After confirming his diagnosis two weeks after birth, she found comfort through his pediatrician.
“I didn’t know until two weeks after he was born that he had cystic fibrosis,” Wyckoff said. “I was terrified, it was really hard. And then we came in that day to see Dr. Lysinger, and the first thing he said to me was, ‘This is not going to be the same. He’s going to grow up totally normal, it’s nothing to be compared to how you grew up.’ And that right there was just such a relief, just hearing that."
Thanks to Trikafta, Logan won’t have the same story his mother does. He will begin Trikafta treatments when he is two years old.
“Just going through everything I did. Going through all the pills and treatments and hospitalizations and everything like that,” Wyckoff said.
The Wyckoffs are now looking to the future with a positive outlook, working to inform others with CF about the wonders of the new drugs.
“I’ve had friends that had been on the lung transplant list that got taken off as soon as they started this drug," Wyckoff said. "It changed their lives so dramatically for the better.”
Wyckoff has organized a car show fundraiser for Saturday, Aug. 19, 2023, on Pike Avenue in Columbus, beginning at 9 a.m. Money raised will be donated to the Cystic Fibrosis Foundation.Registration starts at 8 a.m. and the awards are at 2:30 p.m. Multiple food trucks will be on hand, along with live music and a silent auction.
To learn more about Trikafta, click here.
“The future is great. I mean, there’s going to be some hard times, definitely some hard times. But there’s great times," Wyckoff said. "Just keep going as you can and do everything you can to help and get a cure. Donate, fundraise, everything you can."
