The 80th at 80: UK patient crosses milestone for cystic fibrosis

LEXINGTON, Ky. (March 12, 2026) — In 1945, someone diagnosed with cystic fibrosis faced extremely long odds to live a long life. Many never made it out of childhood.

Groundbreaking advances in research and care in recent decades have greatly increased the length and quality of life for many of those born with cystic fibrosis (CF) — a rare genetic disease that affects the lungs, pancreas and other organs.

Still, older Americans living with the disease are uncommon, but increasing in number. In 2024, there were just more than 3,000 CF patients older than 50 in the Cystic Fibrosis Foundation’s registry of U.S. patients.

So when Ryan King — the oldest patient being seen at UK HealthCare’s Adult Cystic Fibrosis Center — turned 80 years old in October, he achieved a remarkable milestone he joined rare company. He was just the 80th recorded person to reach that age in the Cystic Fibrosis Foundation’s patient registry.

“I hope that being 80 years old can be an inspiration to somebody that’s 20 and living with CF,” King said. “For a long time, this was a death sentence, but with the medications available today, people can live long, full lives with this condition.”

“He’s the first patient at UK that I’ve been able to celebrate their 80th birthday with,” said Michael Anstead, M.D., the director of the Adult Cystic Fibrosis Center at UK HealthCare. “It’s definitely a major milestone, and I think over the next decade we’ll see many more CF patients reach their 80s.”

Anstead has been taking care of CF patients at UK since 1993. According to the CF Foundation, the median survival age for babies born that year was 31. Among babies diagnosed with CF in 2024, more than half are predicted to live beyond age 65.

What is cystic fibrosis?

Many organs in the body, like lungs, the pancreas and intestines, are lined with salt channels that pump out salt and water. That salt and water help those organs perform essential functions.

People with cystic fibrosis have a genetic mutation that negatively affects those salt channels, which can cause the lungs, pancreas, liver or other organs to get clogged and infected. Thick mucus can build up in the lungs, potentially hampering breathing and creating an environment where germs can thrive. Symptoms and their severity can differ from person to person. As a genetic disease, CF is not contagious.

“When the lungs get clogged up and airways are obstructed, you can get these infections that eventually will damage the lungs and lead to destruction of those airways,” Anstead said.

The 1989 discovery of the gene that causes cystic fibrosis, the first disease-causing gene to be identified, paved the way for future discoveries. Treatment improved for decades, and the approval of the gene-modulating drug Trikafta in 2019 was a major breakthrough.

The drug can essentially target and improve function in those mutant salt channels, and approximately 92-95% of CF patients have mutations that work with the medicine, Anstead said. On average, patients have about a 14% improvement in lung function — which can make a “tremendous” difference for patients.

Living with an undetected disease

Today, CF patients are often diagnosed as infants, but King wasn’t diagnosed until about eight years ago.

“There’s still a significant number of patients who are diagnosed as adults,” Anstead said. “Some of them have mutations that are more mild, or some may just have more mild disease symptoms.”

About 90% of CF patients are pancreatic insufficient, Anstead said. However, King is among the 10% who get sufficient function from their pancreas, and sometimes patients with that mutation could be missed. But that doesn’t stop him from getting lung problems and damage.

“Before I turned 21, I had already been in the hospital three or four times with pneumonia, different lung conditions,” said King, who was born in Lexington in 1945 but grew up in Letcher and Pike counties.

He could go several years without getting sick but always seemed susceptible to things like bronchitis.

“I never could get in shape and couldn’t play sports because I never felt like I had the energy or endurance that I wanted to have,” King said. “But I didn’t really let that stop me. I just went on trying to do what I wanted.”

That’s exactly what he did. After graduating from then-Pikeville College in 1968, King became a high school teacher for about six years, but soon left that for a varied career spanning multiple fields.

“I worked many physical jobs,” King said. “I was a motorcycle mechanic, I worked in coal mines, I worked for the power company climbing poles, worked in a steel mill. I even drove a milk truck with door-to-door delivery.”  

But occasionally, the disease King didn’t know he had would make him quite sick. He had a standing prescription for antibiotics throughout his life. After an X-ray in 1972, a doctor told King that he had a cavity in his lungs and was worried that he had tuberculosis. He was checked into the tuberculosis sanatorium in Ashland and stayed for eight weeks.

“They had to run a culture to see if you had TB or not,” King said. “After four weeks, I didn’t have it, but they decided to run another culture and had me stay another four weeks, but I still didn’t have it. I was lucky not to have it. Everyone else in my ward had it. They all were sent upstairs to the TB hospital, but I got to come home.”

A diagnosis

In 2017, a lung specialist that King was seeing in Lexington recommended that he get a genetic test. The test results gave King a shock: he’d lived his entire life with cystic fibrosis.

“At first I found it distressing,” King said. “But that doctor said, ‘Well, you didn’t catch it. We just caught it. You’ve always had it.’ I thought, ‘that’s not so bad.’ At least it’s not something new, right?”

At that point, King said he was struggling to bounce back from illnesses like he was used to. His regimen of antibiotics wasn’t cutting it, his oxygen was low, he was having to sleep on four or five pillows and he was coughing “all the time.”

King was referred to UK HealthCare’s Adult Cystic Fibrosis Center, where he met Anstead for the first time. King said he was “more than just impressed” by the clinic. King got specific attention from a multidisciplinary team that includes a nurse practitioner, social worker, nurse, dietitian, pharmacist, respiratory therapist and two attending doctors.

“The second time I saw Dr. Anstead and his crew, I asked him, ‘Am I the only patient that you have?’” King said. “I was impressed with the amount time and interest they showed with a single patient, but they said they do the same for all their patients.”

The clinic is the largest adult cystic fibrosis center in the region and follows patients from Kentucky and multiple surrounding states.

King was prescribed one of the groundbreaking new gene modulators, and within days his cough had disappeared and he could sleep on his back comfortably. 

“Without these modulators, he wouldn’t be alive today,” Anstead said. “In the eight years since he was diagnosed, they have had a profound impact on his health.”

In October, King celebrated his birthday with a small party with his wife, followed by a trip to Cumberland Falls. They also attended magician’s convention — for a time, King was also a practicing magician and was a member of the local magic guild.

When Anstead informed King that he was the 80th recorded CF patient to turn 80, he added that he hoped King would be the 100th to turn 100.

“I’ll do my part,” King said with a laugh.