WDRB SPECIAL ASSIGNMENT | 'I'm dying, will you help?' Louisville pastor brings awareness to little known terminal disease
It's a little known and incredibly dangerous disease that kills almost as many people as breast cancer each year.
LOUISVILLE, Ky. (WDRB) -- It's a vastly unknown and incredibly dangerous disease that kills almost as many people as breast cancer each year.
A Louisville pastor is dedicating every last breath to Ideopathic Pulmonary Fibrosis (IPF) -- the condition that is stealing his own.
Pastor Mike Olsen's robust chuckle filled the Laughing Derby Comedy Club on a quiet Sunday night. They call laughter the best medicine and these days Olsen needs a double dose because he's tried everything else. "There's days when I cry by myself," Olsen said with tears in his eyes."Because who wants to die ... I'm only 54 years old."
IPF is an unstoppable disease that forces scar tissue to eat away and slowly corrode the lungs.
"The patients are no longer able to absorb oxygen into the blood stream and ultimately results in respiratory failure and then death," explained Dr. David Nunley, a pulmonologist with Jewish Hospital and U of L School of Medicine.
Put simply, Olsen's body attacks itself with no known cause and no known cure. He said "It feels like there's a band around my chest and someone is squeezing it and they won't let go."
A doctor gave Olsen two years to live when he was first diagnosed and in December of 2014. His story mirrors the plight of the 150,000 IPF patients in the United States. But the Pastor is determined to be the one who makes a difference. "I say I came into this world kicking and screaming as a baby, I'm leaving this world kicking and screaming."
He's pledging not to be defeated by the illness that kills nearly 40,000 people a year, almost as many people as breast cancer but with far less attention and little research. "I thought maybe I'll just put my life out there," Olsen said.
The pastor of Iona Community Church decided to use whatever time he has left to share one last message. "Saying 'hey there's a disease out there called IPF and we need your help.
The Mike Olsen Project
"I'm dying will you help." It's a phrase Olsen has uttered many times since his IPF diagnosis. It's what led WDRB to follow his journey for all of 2016 and gave birth to, " The Mike Olsen Project."
The project was the production of a young filmmaker who was like many moved by Olsen's determination.
Filmaker Danny Chastain explain, "He (Olsen) basically said I don't have any money to spend on this project, but it would be for a good cause and my first reaction was how, how am I going to be able to tell this story."
It's told as a short documentary. Olsen's candid, infectious and persistent personality drives the story. You almost laugh to keep from crying, realizing the film completes a dying wish.
The piece helped open doors for Olsen, including a meeting with Louisville Mayor Greg Fischer who dedicated a Louisville day in his honor. He also met face to face with Governor Matt Bevin who named Olsen a Kentucky Colonel, the state's highest honor.
Kentucky deemed September IPF Awareness month.
Olson also scored time with U.S. Senator Rand Paul and a Congressman John Yarmuth as he lobbied for funding and research for the disease.
As the days grew longer, Olsen's body got weaker and on the last Friday in June there was an unexpected call.
Sitting in a pre-op room at Jewish Hospital Patti Olsen Mike's wife said, "I got on the phone, I heard Mike's voice and it was shaking and he said Patty are you ready for this."
Olson was asking if his wife was ready for the news that he was up for a double lung transplant. It's not a cure, but doctors say it gives IPF patients more time, sometimes as much as 10 years.
Even in a hospital gown as he's being poked and prodded the pastor is in typical form letting out a big belly laugh as he explains that he's a "baby" over needles.
"It is like surreal, like here we are," Patti Olsen said. Though the surreal turned to sorrow. After hours of testing, and being told surgery's a go, doctors found a mass on the donor's lungs.
Olson is sent home without the lungs he so badly needed to wait longer on the transplant list.
"I honestly didn't believe it. It must be something else," is what Olsen's sister Pamela Brown thought after learning of his diagnosis. "It can't be as bad as you are saying and it is," she told him.
The failed transplant brought Olsen's family from New York. Its been four years since they've seen each other.
"It's very noble. He's not just sitting around saying 'hey, I have IPF.' He's going to town on it," Brown said.
Olson, now 55, was told by his wife Patty that they're going to a yard sale. Instead his family is sitting outside a home waiting for his car to arrive.
Olsen is a bit confused as he sits in the passenger seat. It takes a few moments to realize who is staring at him. Then the tears begin to flow.
"Surprise," screams Brown telling her brother to take it easy. Between sniffles and teardrops you can hear Olsen gasping for air.
The brother and sister stand in the street in full embrace. The moment, so powerful not even a driver waiting to pass dared to honk his horn.
Their words said hello and their hearts hope, it's not goodbye.
Back at the Laughing Derby the stand-up comedian tells a joke about Olsen's diet as he scarfs down a hefty cheeseburger with fries. The event is actually fundraiser for Olsen's mounting medical expenses. IPF left him unable to work and the family surviving on his wife's salary as a banker Nonetheless, the Pastor's distinct roar is unmistakable in the crowd.
They say life is not measured by the number of breaths we take, but the moments that take our breath away. With sixteen breaths a minutes and 23,000 a day no one knows which one will be their last. Of his Olsen said, "I hope I loved well. I hope I loved my neighbors well, and I hope I loved my family well."
For Mike Olsen, laughter really is the best medicine because they're the sweetest breaths of life.
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