Second Chance: Triumphing Over a Rare Disease

Chance Daves wasn’t ready to let his hunting and fishing licenses expire anytime soon. Still active in his late 50s and spending plenty of time outdoors with his grandkids, he was finally realizing the fruits of his long career as a fiber optics engineer. However, in 2021, he began experiencing breathing problems that stopped him at the trailhead.

“It started to get to where I couldn’t walk 50 yards without having to stop,” Daves recalled. “At that point, I knew I needed to get some help.”

Unfortunately, the doctors he saw in his hometown seemed stumped. “They just kept bouncing the ball back and forth into each other’s court, pushing me into more and more tests without providing answers,” Daves said. “They put me on blood thinners and said I’d have to be on oxygen, and that’s just how it was going to be from now on.”

Daves suspected that something was being missed. After hearing about the reputation of National Jewish Health, he decided to make an appointment with pulmonologist Laurie Manka, MD, who quickly surmised that a cardiovascular problem was at the root of Daves’ breathing struggles. She quickly referred him to cardiologist Andrew Freeman, MD, who discovered that Daves was suffering from a rare and potentially fatal condition known as chronic thromboembolic pulmonary hypertension (CTEPH).

“It was clear this gentleman had been languishing for years, feeling miserable,” said Dr. Freeman. “On his first visit, there were clues in his chart that he likely had a blood clot in his lung. We started investigating the details, and we were able to get him diagnosed.”

Dr. Freeman explained that CTEPH is best addressed through surgery. Doctors need to remove the clots from the pulmonary artery before it becomes fatal, so it was crucial to coordinate a plan for surgery as quickly as possible. “The problem, especially with rare diseases, is that not everybody is aware of the illnesses or understands how to address them,” said Dr. Freeman. “CTEPH is quite rare. Only a small percentage of people who have blood clots in the lungs end up with clotting that organizes into the wall of the pulmonary arteries. But once we identified the illness and sent him into surgery, he was effectively cured.”

It was true. Almost immediately after the surgery, Daves began to feel like his old self again. “I started to recover, needing less and less oxygen,” Daves said. “Now I can have fun with my kids and grandkids. I get to spend time with them. The whole experience was like taking off a leash. I can finally live my life again.”