Trying to Weather the Emotional Storm of Physical Breakdown

My life after a 2011 lung transplant was going along smoothly -- until chronic rejection and the wait for new lungs while hospitalized took me to my physical and emotional limits.

| 7 min read
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Samantha Rick
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Imagine seriously questioning your reality to the point that you doubt what you're seeing when you open your eyes. I wanted nothing more than to be alive, but what I experienced was nothing short of a nightmare. The only thing that convinced me of my existence was the continuous buzz of monitors that kept me alive, illuminating my hospital room and proving to me through a rhythmic beat that my heart was still doing its job.

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I had undergone a double lung transplant in 2011. Recovery and life afterward had gone smoothly. Then in early 2016, I found myself in chronic rejection. My body declined rapidly between April and June, when my medical team told me I would need to be hospitalized until I received a new set of lungs.

The hospital had a way of stripping down a once confident, secure person into fragments of my former self. After I was admitted to the hospital, it didn't take long for the transformation to happen. My once strong, athletic body became a distant memory. Within a month it had been reduced to an 83-pound shell of itself. I started to deteriorate emotionally, too.

I reverted to the once shy grade schooler I had been, knowing I could no longer relate to my peers. I made an effort to check social media and it filled me with envy. Self-pity was not too far behind. My entire world had been put on hold indefinitely, so I decided to imagine everyone else's had too. I did not enjoy who I was this way and I knew deep down inside I was only making it worse on myself. At times I questioned if I even deserved another chance.

I couldn't talk. I was trached (had a tracheostomy) and hooked up to a BiPAP machine, which took some of the effort out of breathing and allowed my body to rest. That's what breathing was to me now, work. I tried my hardest to do it on my own for as long as I could every day. All I could do was focus on breathing. It consumed my every waking thought and the slightest shallow breath was all I could manage.

Not being able to breathe soon became a welcome excuse not to communicate anymore. The idea of explaining my thoughts with words was frightening and I couldn't risk becoming emotional. It kept me from having to admit that I was scared and had doubts about whether continuing to “live” like this was worth it.

Part of being re-listed for transplant is maintaining not only your physical strength but your mental strength so you can meet the demands of a second lung transplant. It wasn't long until feelings of depression set in, but I didn't want to show any signs of mental weakness.

The few times I'd decided to share my feelings, it was with a palliative care worker. She always seemed to appear in my room when my energy was flagging. It was almost as if we had some psychic connection and she knew I needed someone to be there who I wasn't afraid to share my true feelings with.

Admitting how I was feeling led to despair for my situation and sadness for how it was affecting my loved ones. They sure didn't deserve this, and it crushed me seeing them go through the nightmare alongside me. Once the emotions set in, tears followed, and I soon realized I could not control my breathing anymore and I went into respiratory distress. This led me into the intensive care unit (ICU) and it didn't take long before I learned to just not “go there” with my emotions anymore.

I soon became emotionally unavailable. My happy-go-lucky spirit might as well have never existed, and I no longer invited the once welcome flow of visitors. I didn't want anyone to see me this way. It wasn't because of the endless amount of tubes zigzagging through me, it was because I was a hollow version of myself. There wasn't anything that could convince me differently and I was lost in the monotony of “living” in the hospital, or in my case, dying.

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There was no sleeping through this journey. There was really nothing left to do except hope that a match would come while I was still strong enough to accept it. The mental battle waged on, all the while my fight or flight instinct wanted so badly for me to just run away. Every cell in my body was screaming “get me out of here!” It's truly amazing how quickly a body atrophies and I just hoped my mind didn't do the same -- although there were times when I thought it would be a welcome break from what I was going through.

I finally sucked it up and allowed myself to feel some emotion again after almost two months and spoke with my palliative care worker on the morning of October 11, 2016. By the end of our conversation, most of which was her allowing me to voice all my newly developed trauma, I felt mentally reset and told myself, “You've got one more month left in you.” The relief of letting myself feel after keeping it in for so long in fear of not coming back from it was indescribably satisfying; so much so that some of that energy must have been put out in the universe that day.

That evening my nurse practitioner sat at the end of my bed and said, “I heard you had quite a day.” With a nod of my head I agreed. He then went on to tell me that a match had just come in and they would be preparing me for surgery shortly.

When I think back to that moment, my body relives the sensations I felt but there are no words. A tragedy just occurred -- a family was without their loved one, and because of that I was given a chance to walk out of the hospital, to get out of bed, to eat again, to talk, to share and live, and return to my former self. What energy did I generate this morning to create this sudden turn of events? I felt guilty yet vindicated, sad yet elated, depressed yet hopeful. I went from not allowing myself to feel anything to feeling every single emotion at once.

I'm still coming out of the isolation from that hospital stay and have a newfound respect for mental health and illness. I always thought my mind was strong enough to deal with anything, but I'm beginning to realize after almost 38 years that it's okay to have moments of weakness.

After all, being placed in uncomfortable situations is when the most beautiful growth takes place. I just feel lucky to still be alive to experience that personal growth after feeling so mentally trapped. Now when I open my eyes I don't need the buzz of a monitor to remind me I'm alive. I have the smooth rise and fall of my chest, knowing that with each effortless breath, oxygen is being sent throughout my body, and I'm alive.

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Topics
Lung Transplantation | Emotional Wellness | Hospitalization
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Samantha, who was diagnosed at age 3, has been living with cystic fibrosis since 1980. Originally from Wisconsin, she has lived in California since 2003. Samantha earned her bachelor's degree in social science and health with a minor in sociology. She helps adults in the criminal justice system as a case manager for the Alternative Sentencing Program under the Plumas County District Attorney's Office. A firm believer in exercise, Samantha kept her lungs healthy through her late 20s but at the age of 31 she underwent a double-lung transplant. She went for five years without being hospitalized or needing to rely on portable oxygen, before she developed chronic rejection in the spring of 2016 and had to be hospitalized until she could receive new lungs. On Oct. 11, 2017, she received the gift of life once again and has been doing well ever since. Samantha spends her free time rock climbing, mountain biking, traveling, and volunteering with her local CF chapter. She is also a member of Community Voice and is a mentor for the CF Peer Connect and the Lung Transplant Foundation.

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