Surprisingly little is known about a disease that reportedly kills almost as many people per year as breast cancer. “It feels like there’s a band around my chest and someone’s squeezing it, and they won’t let go,” says Mike Olsen, 57, a pastor from Louisville.
He’s describing idiopathic pulmonary fibrosis, a terminal lung disease with which he was diagnosed in December 2014. With IPF, scar tissue progressively builds up and deteriorates the lungs, resulting in respiratory failure and, ultimately, death. “Since I have never smoked, this disease was unexpected,” Olsen says. There is no known cause or cure.
Olsen, however, has not given up and is committed to raising awareness and lobbying for increased research funding for the 150,000 IPF patients in the U.S. and others worldwide. His efforts have included being featured in a short documentary by filmmaker Danny Chastain. The resulting film, The Mike Olsen Project, won an Emmy Award in August 2017, and the Commonwealth of Kentucky has dedicated September as IPF Awareness Month.
Olsen with the Emmy won for The Mike Olsen Project
All the while, Olsen is working on ticking items off his bucket list: singing with Dennis Quaid and the Sharks at The Burl in Lexington; meeting prominent figures such as Grammy Award-winning songwriter and musician TobyMac, country music star Joe Nichols, Louisville Mayor Greg Fischer and Kentucky Gov. Matt Bevin, who honored Olsen and his wife, Patti, as Kentucky Colonels; and even making a trip to the White House’s West Wing.
“I am so amazed at all the doors that have opened for me despite my sad prognosis,” Olsen says. “I try not to let it limit me and the things that I can do, but being dependent upon oxygen to breathe has become quite difficult to say the least.”
Olsen is on a double lung transplant list at Jewish Hospital in Louisville—the only option available as IPF progresses. Unfortunately, even recovery would come with its own challenges. “You’re trading one disease for another disease,” Olsen explains, “because yes, [a double lung transplant] will eradicate the [IPF], but then you are on medication for anti-rejection for the rest of your life …
“There will also be rehab and ongoing medical checkups with adjustments of medication.”
Those who wish to donate toward Olsen’s medical expenses can do so through the Mike Olsen Project Lungs for Life fundraiser through the Commonwealth Bank and Trust at 4944 U.S. Highway 42, Louisville, KY 40222, (502) 259-2080.