CF Lung Transplant Candidates: It’s OK to Be Afraid

CF Lung Transplant Candidates: It’s OK to Be Afraid

September 2016

Every bone, tooth, and vein in my body trembled. The oxygen cannula hugging my nostrils slipped on sweat.

I sat at a cold table with my pre-transplant coordinator who’d subjected me to a presentation that vividly, gruesomely, described the lung transplant process. It seemed more like a plot description for a “Saw” film. It’s a mind game; transplant centers want tough candidates. They won’t “waste” organs on someone who can’t endure suffering. They want to know you’ll grab the bull by the horns, and even be powerful enough to tear the horns off. They want to scare you away from the organs if you ain’t made of the right stuff. Tough stuff. I was next-level frightened. Paralyzed.

Hands clammy and eyes wide, I gave a shaky laugh. What else could I do? My CF specialist said I was “at the end of the rope” and asked if I was ready. I was ready. I looked her in the eye and said so.

Tough enough, I rolled my cuffs and volunteered for torture. Afraid, but ready.

(Courtesy of Brad Dell)

October 2016

The transplant evaluation included a psychological assessment. I confessed to the psychologist that I was afraid and anxious, but hurriedly assured him that I was determined. He sipped his green tea and slowly replied that he’d be more concerned if I wasn’t afraid. Test passed.

November 2016

After the violating evaluation process, I finally got the call that my center listed me for lungs. My family celebrated, as did friends around the globe.

I smiled weakly and excused myself to the bathroom. There, on my knees, I dry-retched into the toilet, then drew a bath. I lay in piping-hot water and traced the little ribs that protruded from my barreled chest — they’d be broken to squeeze the new lungs in. I caressed the skin, imagining it stretched and split for surgery. I examined the months-old scar from my port removal (sepsis crisis) and visualized the scar extended tenfold to bridge my chest from pit to pit. I already hurt.

I heaved sobs in draining, lukewarm water. I dried myself with a towel (eyes, too), and marched out of the bathroom with a brave face.

January 2017

I woke up, bulky breathing tube in my mouth. This is it. I’ve done it. The die is cast; Rubicon crossed. Time to focus on survival. The surgery was finished, and goals were simplified. There was still much to fear, but the worst fear was now history.

Iacta alea est. Two days after the surgery. (Courtesy of Brad Dell)

August 2018

“Old weenie Brad would have said, ‘What the frick are you doing, man?’” I shouted to Kathleen, a heart-lung transplantee.

We raced along darkening paths in Zion National Park, both thinking of the sign at the entrance of the hike warning that mountain lions scouted the area. We trekked 13.5 miles that day. I’d won gold and silver medals in badminton at the Transplant Games of America two days before.

At the Transplant Games of America. My FitBit claims I averaged only 67 steps per day in July 2016. (Photo by Kathleen Sheffer)

We reached the observation point at twilight, and for the first time in a long time, we couldn’t breathe. Rusted titans stood sentry over sky and earth. Sedimentary rock, pressure-packed then cut, chiseled, by water into something marvelous. As a man eaten away by CF for 25 years, the formations’ testimony to the awe that could birth from slow, steady destruction touched me. I stood at the cliff’s edge, defying my past height phobia. I felt eternal and invincible, as I had many other times in hikes like this. I am no longer afraid, save for the worry that there isn’t enough time on my clock to chase all my craved adventures.

(Photo by Brad Dell)

Kathleen and I snapped photos and rushed back in no-moon black for three miles, noting mountain lion tracks on the sand path and bats swooping into the brush surrounding us. From behind me, Kathleen’s flashlight cast my shadow into a colossal figure far mightier than any rattlesnake, mountain lion, or lung disease.

Balking at transplant was OK, and as my psychologist remarked, normal. CF is a world of unfair fear. I won’t lie to you: Pursuing transplant was the most bloodcurdling undertaking imaginable. But it was a baptism of fire; a baptism into a life in which I am no longer enslaved by terror. I now seize the day, tightly and fervently.

I loathed the label “warrior” before my transplant — I didn’t choose the CF fight. But I chose transplant, and I’ve battled relentlessly. Once you’ve achieved transplant, you’ve conquered — a conqueror. It’s OK to be afraid. But be confident in the hope that you will one day be victorious.

I will be presenting a keynote for CF Foundation’s MiniCon: Transplant, and will facilitate two other speaker sessions. Click here to register for the Aug. 15 event. Also, follow my adventures on my Facebook Page.

(Photo by Kathleen Sheffer)

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