I Want to Do More Than Survive in Life After Transplant

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by Nicole Kohr |

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Are you living or surviving? Most cystic fibrosis patients have dabbled with this question. To what extent does your health guide your life, rather than love or ambition? I knew the answer back in 2018, but after my bilateral lung transplant in June 2019, things grew complicated.

Letting go of the past

It took me several days to stop using oxygen after my transplant. The stats claimed that I could breathe, but I was positive that I couldn’t. I wore my finger pulse ox like a fashion accessory. I’d check it every few minutes, just in case of an emergency.

My port-a-cath was removed during my transplant surgery to prevent infection, so all IVs from there on out were temporarily placed in my thumb, my leg, my chest, or my elbow. All other access points were too scarred.

The shakes I’d been drinking for over a decade to combat malnutrition were starting to do more harm than good. My chin began to develop its own zip code, something I’d only experienced when I was on a high dose of prednisone.

I told my doctors my lungs felt junky. Apparently, they were healthy. I told my doctors I had a fever. They insisted I did not.

I felt like a tourist, like my frequent flyer pass was shredded. I lived and thrived in emergencies. That was my normal. Was it really a Friday evening if I didn’t call the clinic’s after-hours emergency hotline? Having a bunch of strangers assure me that my lungs were stable made me upset, as if my wealth of experience from years prior didn’t exist. I had to see it for myself.

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Trust

I didn’t trust anyone, especially the new lungs. My old lungs were flawed, but at least I knew what I was dealing with.

Nurses would bring me medications that I didn’t recognize, and I’d question them. Insurance bills claimed I was healthy despite the bullet-sized holes and staples in my still-recovering chest. Suddenly, I had to fight for my handicap placard.

Moreover, the entire transplant team had explained the importance of caution and hypervigilance post-transplant. How was I supposed to “report anything suspicious” without sounding like a privileged hypochondriac? To what extent should I be paranoid?

My gut

Doctors replaced my lungs, but they may as well have replaced my gut as well. It had guided all of my past decisions and never led me astray. Post-surgery, my gut has proved to be incorrect time and time again, making the final person that I couldn’t trust … me.

A new disease

“Transplantation is not a cure, it’s a treatment plan,” the nurse said. I heard it over and over again during my evaluation and recovery. My lungs were changed for the better (hopefully), but now everything else was at risk.

If my rejection medication dosage was too high, I could seize. If it was too low, I could reject. My liver and kidneys needed extra love after the trauma of surgery and the slew of new medication. My hair fell out. I was swollen and atrophied, and I was transitioning to a normal diet. Have you ever told an emotional CF patient that they can no longer eat a family-sized KFC bucket for lunch? The timing wasn’t great.

Yet, everyone I’d meet would say “Congrats!” or “You’re cured now!” It was frustrating.

Survivor’s guilt

Everyone has to vent, but I’d feel terrible when I vented to my CF friends. Compared with the life I was living in early 2019, I had nothing to complain about. I could breathe. I could walk. Heck, I could run. I was finally independent.

Complaints about how shaky I felt or how much weight I had gained would spill uncontrollably from my lips. I could tell what a slap in the face it was to my friends who were in the midst of flushing their accessed port-a-caths, but it kept coming like word vomit.

The song “More Than Survive” opens the 2019 Broadway hit “Be More Chill,” a technology-filled story about an average teen who wants to do more than survive.

That was always my goal — to do more than just my treatments. There are times when I feel lost post-transplant. I’ve had to adjust my food intake, my medications, and my view of the world. But when I ask myself if I’m living or surviving, I think back to last Friday night. The only call we made was a Chinese food delivery. Does that answer your question?

Surviving after lung transplant | Cystic Fibrosis News Today | A small pill container filled with post-transplant medications.

A few of Nicole’s post-transplant medications in her North Carolina kitchen. (Photo by Nicole Kohr)

Check back every Thursday to read more of my story.

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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, and are intended to spark discussion about issues pertaining to cystic fibrosis.

Comments

Paul met Debbie avatar

Paul met Debbie

This is understandable and well written and thought out, but it is all mind confused in illusion. Try not to think life. There is no question of living or surviving. Life lives and survives through you by itself. It calls all the shots. There is no one there to do anything. Go beyond the world of I, Me, My. Go beyond time. You have done well in trying to do, but now try undoing. Surrender to what is. There is only what happens and it is freedom in action. Lose yourself, get out of the way, never mind being helplessly blown around like a leaf in the wind - you are the wind as well. Read something philosophical, like about Daoism. Listen to the talks of Alan Watts and relax a bit. You deserve it. Freedom from the known. It's the only cure. Let go of past, future and time at once. Just be.

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