From IPF to Transplant

The Long Trek Upstairs

Prior to receiving a double lung transplant in March of 2015, I wrote The Long Trek Upstairs. It was my attempt to capture my experience of living with idiopathic pulmoanry fibrosis (IPF), a disease that literally takes one's breath away, and makes simple acts of living, like walking upstairs, nearly impossible.

 

Following my lung transplant, I began the blog real Being. It is a collection of my reflections that are driven by my journey through (IPF), and through the double lung transplant, which breathed life back into my body once again. Insights found on real Being stretch far beyond the disease to discoveries about being real, real being and what is truly important. You are free to read it without subscribing. Becoming a subscriber emails you one short essay about every week to ten days.

 

The Back Story

In March, 2014 I was diagnosed with idiopathic pulmonary fibrosis (IPF), a disease that scars over the lungs, eventually making it impossible for them to deliver oxygen to the body. The medical community has very little understanding of IPF, and there is no cure for it. Typically, those who develop IPF die within 3-5 years of diagnosis. Effectively I had become a balloon with a slow leak.

 

Within a few months of diagnosis I was on oxygen, carrying my portable oxygen concentrator with me wherever I went. Shortly thereafter I was unable to walk from one room to another without being tethered to a much larger concentrator by 50 feet of breathing tube that trailed behind me everywhere. Chairs had been strategically placed throughout the house in case I had to sit downunexpectedly to catch my breath. The simplest of things, like taking a shower, or dressing myself, had become arduous and nearly impossible without my dear wife's help. Saint Terri, I call her.

 

I found that while I could explain the disease to others, I could not explain the experience of actually living with the disease and the process of slowly suffocating within my own body. So, In the middle of all of this, I wrote The Long Trek Upstairs about trying to do something as simple as walk from the first to the second floor in my home.

 

When I wrote The Long Trek, I knew that my disease was progressing so rapidly that any hopes of living rested on getting a lung transplant, and getting one soon. My research showed that most transplant centers had waiting times of up to 6 months, potentially beyond my life expectancy. A flurry of Internet investigation uncovered that in my own backyard in Phoenix was The Norton Thoracic Center at St. Joseph's Hospital, with an excellent reputation for lung transplantation and a waiting time of typically no more than a month. After passing a number of qualifying tests, I was selected for transplantation. On March 6, 2015, thanks to the foresight and magnanimity of someone I will never meet, I received two new lungs. The surgeons told that my old lungs were down to 30% of their capacity. I was dancing right on the edge.

 

As I write this on March 30th, 2015 every day is getting a bit better. There’s the pain, shakes, and insomnia. But these are abating. And I am breathing. Last week I mailed my oxygen concentrators back to the health gear rental company. It was a glorious moment.

 

To understand more about how this experience has impacted me, read my realBeing blog. But suffice it to say that I have been changed irrevocably. I am deeply humbled, grateful and enlightened by the experience. Now that I represent two people, I try twice as hard to make sure that I what contribute to the world truly matters.

 

Every presentation I give, sentence I write, conversation I have is somehow infused with this experience. If you want to know more, feel free to contact me: jasonohler@gmail.com