Transplant Is Horrendous in the Beginning — You’re Not Abnormal

On the night of Jan. 15, 2016, nurses rolled me in for surgery. I rolled out on Jan. 16 with a donor’s lungs.

It’s been two years packed with awe. I love my post-transplant life. I’ve traveled all over, picked up new passions, and my addiction to life only grows. It all didn’t start smooth. It was torturous and defeating. But it did get better.

This column is for the recently transplanted people who feel hopeless.

I expected to wake up taking the deepest breath ever known to mankind. Instead, I awoke with a wheeze through a plastic ventilator. The pain wasn’t so bad, honestly. Not as bad as I expected. At least, not in the incision area. What did hurt more than expected was my back. I guess they were a little rough with my limp body during surgery — that’s common — and so I had severely pulled muscles and shoulder pains. I had a day when I completely melted down in tears, screaming and begging doctors to do something for my agony. They eventually fed me fentanyl via epidural.

(Courtesy of Brad Dell)

It wasn’t only the pain that was driving me crazy, but the intense fear, the confusing bodily changes, the guilt.

Join the CF forums: an online community especially for patients with cystic fibrosis.

I was afraid of having my immune system corrupted to prevent organ rejection. I was up all night as insomnia is common with transplant. Dust parachuted through moon rays; I imagined every microscopic bacterium hitchhiking on the particles, and that each breath drew in a legion of cells determined to murder me. I vomited constantly and worried I’d aspirate bacteria into my fresh lungs. Paranoia defined my existence.

I feared the unknown, of not knowing my “new disease.” I’d learned CF’s ropes after 23 years of living with it. I knew next to nothing about transplant. I flipped out while trickling pills into weekly container compartments. One capsule dropped to the ground — dangerous to my compromised immune system — and I sobbed. I didn’t know the names of the new medications, I didn’t know their purpose, I didn’t memorize how many pills I had to take. CF was my disease but I was a transplant infant.

My body felt alien. A stranger’s lungs breathed inside of me. I spit out mucus, that person’s and not mine — revolting. My mind was foggy, distant. I had confusing spiritual connections to my donor and couldn’t decide if I hated or loved it. Lead seemed to line my pants; I could barely walk. Edema swelled everything below my knees, pumping my toes to look like mini-Michelin Men. I was missing chunks of flesh in my torso. It wasn’t my body; this wasn’t what I was born with. I began missing my lungs that carried me so far, and I felt treacherous for surrendering them to some strange laboratory. They carried me so far.

Guilt permeated all. I knew the donor would have died anyway, but that didn’t make me feel better. I felt guilty that my parents watched my constant misery when they’d placed so much hope in me getting better; that they had to take care of their broken son. I felt guilty that I’d promised myself I’d be athletic to honor my donor, yet I could barely leave my bed. I felt guilty for having a transplant when friends died. I felt guilty that my lungs were healthy when my newly transplanted friend died of rejection soon after my surgery.

I medicated my guilt with fentanyl and tramadol and OxyContin. I was dependent long before realizing it. My body dragged itself across frigid kitchen tiles at night, moaning as I blindly shuffled my hand through my medicine basket for spare painkillers. Guilt ripped into me once again. I swaddled myself in blankets and cried, cried, cried. I got the transplant to fix myself and yet I broke more. I suffered identity crises. Who am I? What am I doing? I was depressed, intensely anxious, and furious.

Every time I posted to a lung transplant support group, people repeated the mantra, “It gets better.” I loathed them for it. What kind of support was that?

 But … it did get better. It really did.

Brad and his friend, Kathleen Sheffer. (Courtesy of Brad Dell)

I’ve jogged up mountains. I’ve traveled all over. I’ve not had a single lung-related issue this past year. I’ve caught myself forgetting about CF. I don’t think much about opioids. I’ve helped others get transplants. I’m sitting with my best friend on a Hawaii beach and we’ve just planned a trip to Australia. He’s laughing and I’m laughing, and I’m writing this. I should be dead right now.

I’m alive, I thrive, I’m better. It’s all better. Don’t divert your eyes from the future. All transplants are rough in the first months. There’s nothing wrong with you for being afraid and confused and angry and guilty. That’s, sadly, normal.

I’m sitting here two years after my transplant to tell you that life does get better. So much better. Keep pushing.

***

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.