During the summer four years ago, Kevin Olson was sick multiple times and running on his treadmill led to him coughing up blood. He went to the emergency room and was told the most likely cause was pneumonia, though blood clots reoccurring was another possibility.
The year prior, he had pulmonary clots.
His health never recovered and that led to the diagnosis that he had pulmonary fibrosis, something he learned in 2014.
This month is pulmonary fibrosis month awareness month, but the Platte City resident has been trying to raise awareness since he found out the diagnosis. He has a personalized license plate and wears a wristband about PF awareness.
This month, he is helping the area become more aware of the disease that will ultimately take his life. He set up an information stand at the Platte County Community Center North location in Platte City, which will be up through the end of the month.
Olson not only has PF, he has a case that is much more rare than normal with ossification in his lungs.
What isn’t known is what happened first. Did the ossification lead to the PF? Or did the PF lead to the ossification?
His theory is aspirations in his lungs caused the ossification, which then caused the PF.
Olson was aware of breathing disorders such as COPD — his mother, a smoker of more than 50 years, died from that — but PF is something that he had no knowledge of until he heard the diagnosis.
His version of PF, with the ossification, effects about 1.6 people out of 1,000 PF diagnoses so out of the about 200,000 people nationwide that have PF, about 325 are battling the same type of disease that Olson faces.
The disease has been around for years, but the numbers have risen a lot since 1880, when there were about 100 cases.
“That is the biggest thing, the awareness of it,” Olson said. “It’s not cancer. It’s close to cystic fibrosis, but it is not.”
The disease, while not well-known, was one that Jerry Lewis battled for nearly 20 years. Lately, the disease has gotten some light shined on it from Jordan Howard, the starting running back for the Bears. His father died from the disease and with him playing in Chicago, where the PF foundation is headquartered, he has aided in spreading the word.
The symptoms that Olson experienced mimicked COPD, but he didn’t smoke. PF takes generally two years to full diagnosis.
Now, 64, Olson takes pills to slow the progression of the disease under the treatment of Dr. Mark Hamblin at KU Medical Center, who focuses specifically on fibrosis disease.
PF differs from cancer as there is no exact stage to know how bad the disease is.
Olson has battled it for four years and he notes some outdated medical literature stats the average lifespan is between three to five years after diagnosis, but it is case-by-case.
Olson is part of support groups online and tells of a woman that joined in April and four months later died.
He is well aware of his mortality, especially if he can’t get a transplant.
“I think about it every day,” he said if he thinks that today could be his last day.
He has made two trips to Barnes-Jewish Hospital in St. Louis to see if he qualifies for a transplant, but thus far, his lungs aren’t bad enough to get on the list.
The odds are stacked against him as about 1 percent of those with PF – about 2,000 – can get a transplant. Last year, he notes, the number was about 2,600. Getting the transplant is one thing, surviving long is another.
Olson has found strength in support groups, first at the St. Joseph Medical Center near State Line Avenue, but that meant a 45-plus minute trek from Platte City. When he started there were less than a dozen that attended and now there are 40 or more each month.
This summer, North Kansas City Hospital started a PF support group.
“I truly believe in support, being there to talk to other people and hear what they have done, and their experiences and you provide yours,” said Olson, a father of two grown children, one in Seattle and one in Lansing, Kan.
Olson is a native of Kearney, Neb. He attended West Point Military Academy and that led to a military career that lasted more than 30 years. He was in the Army from 1976 to 1987 and then took a job in the civilian corps at Fort Leavenworth and spent 14 years there. He got a job in the public sector from 2000 to 2006, before returning to Leavenworth from 2006-2012. Olson retired with 35 years in federal service.