My IPF Diagnosis: From Denial to Double Lung Transplant
Excerpts from "Close to My Heart – Travels with a Double Lung Transplant"
Idiopathic pulmonary fibrosis (IPF) is a disease that causes scarring of the lungs. The word "idiopathic" means it has no known cause. Scarring causes stiffness in the lungs and makes it difficult to breathe.
Dr. Mike, one of my best friends, solemnly said, "Rob, you have IPF (idiopathic pulmonary fibrosis). There isn't a cure." My mind silently shouted, "No I don't because I'll get out of this." … A barrier was built.
This encounter took place in November 2014. Life moved on, my IPF plateaued and denial continued. But in September 2015, I almost drowned retrieving a dropped canopy stay in 10 feet of water. Half way down my lungs ran out of air. After my wife, Jackie, miraculously saved me, holding each other close in the back of the boat we knew I was in deep trouble.
Writing, "No … I'll get out of this" seems so trite now, three years later. My doctor was telling the truth—the northern Michigan specialist wasn't fabricating results—but when you hear "incurable," your mind plays tricks. IPF was not part of me because there was a way out.
Jackie understood the reality; I negated it. I wouldn't talk about it. IPF didn't exist. Days passed and clearly my coughing issues weren't stubborn allergies. My thoughts turned to, "Whatever this is took a long time to develop and will take even longer to get worse." But why take a blind eye to substantiated evidence? Doing so made no sense, but sometimes our guarded brain turns certainty upside down, we bury reality, we make up our own truth.
Summer green turned to fall's brilliant golden brown and my daughter, Zachera, somehow got me an appointment at Northwestern Memorial Hospital's Pulmonary Lung Program in Chicago. After weeks of not wanting to discuss "the problem that didn't exist," Jackie and I sat in a room with one of the top pulmonary specialists in the country.
Dr. Danzer introduced himself and we had the usual friendly give and take of information. Was my coughing getting worse? Was I fatigued during the day? How was I sleeping? Finally, he viewed my two CT scans one more time. Looking directly into my eyes, he said, "I have examined your CT scans at length. Evidence presented shows advanced IPF" … he paused … "Would it be possible for you both to meet our lung transplant team this afternoon?"
Denial was over. In northern Michigan, my condition was just theory, a blip on the radar, distant. But a top lung specialist was suggesting a lung transplant. Me—a lung transplant. Time halted. It just stopped. Nothing moved forward, a bullet suspended in mid-air.
Breaking my silence, I said, "Dr. Danzer, a lung transplant?" He wasn't sure what I meant. I said incredulously, "You mean … if I don't do this, I'll die? No other plan? That's it? A lung transplant? You can actually do something like that?"
Dr. Danzer said, quietly, "Yes … we can."
I turned to Jackie and then back to Dr. Danzer, "Do we have some time … ?"
"Your comparative CT scans show rapid IPF growth in both lungs. IPF plateaus but then plummets …" He paused. "Your advanced unmanageable stage gives you less than a year. Knowing the time exactly is, truthfully, an educated guess."
"So, without a transplant, I will be dead by Christmas …"
No one spoke. There it was … Believing my condition could be a different disease—a curable one—kept me insulated. But this was it. Lung transplant was my best treatment option. My avoidance, my fantasy, my "rosy colored glasses" suddenly shattered into pieces.
Death is vague—we keep it that way. It's going to happen, but we put it on a dusty, basement shelf. It's intangible, uncomfortable, and drives your mind to disarray. Better to close the cabinet door—out of sight. When we attend funerals, we visit death, and our lives move on.
Coming back, I heard Jackie say, "Dr. Danzer, we'll meet your lung team this afternoon. Where would you like us to go?"
On February 19, 2016, I received a double lung transplant. It's now July 2019. Thanks to incredible doctors/staff, my resilient family, and a woman who gifted her husband's lungs, my chest quietly moves up and down. I stop and marvel at this phenomenon every day. Then I take long bicycle rides, watch sunsets, visit my beautiful daughter in Chicago, work on my next art piece … I am alive … I am here.
Bob Wollenberg says growing up in Detroit in the 50's/60's taught him to be tough, resilient, and to revere life— qualities that pulled him through his double lung transplant. He's been an English teacher, coach, truck driver, carpenter, tour guide, bartender, college professor, artist, poet, and just finished writing a book about his transplant experience. But more important than anything else in his life, Bob has been surrounded by an incredibly positive, loving family who stood next to him through every single step of his transplant journey.
Related Topic: Health & Wellness
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