Rumbling With the Transplant Decision
It’s been three and a half years since I “chose” life through a double-lung transplant. Life-and-death decisions rarely are black and white. The path to making my decision wasn’t linear; it was a journey to wrestle through, devoid of clear-cut answers. I hope this column will help those on the fence about choosing transplantation.
I was 20 when I got the “transplant talk” from a social worker who entered my hospital room after my lung function dipped below 50% capacity. The conversation was awkward and left me feeling angry. Often, the underlying emotion fueling anger is fear, hurt, or sadness. I think a culmination of these three drove me to turn inward instead of engaging in the discussion.
I pretended to brush the talk off like it was nothing, but it was definitely … something. No 20-year-old wants to rumble with death, let alone make a life-or-death decision. All I wanted to worry about was fitting in with my peers. I wanted to focus on writing papers, partying, living the dream. I buried my feelings beneath mountains of pizza and drowned them in cheap whiskey. (Isn’t that how everybody copes?)
My older sister is a gifted researcher. She casually handed me a book written by twins with CF who both had double-lung transplants — Anabel and Isabel Stenzel. “The Power Of Two,” a detailed account of the road to transplant, drastically shifted my perspective because it was honest about the good, the bad, and the ugly. Huh. If they can do it, maybe I can, too. The seed was planted.
After college, I worked full time as a therapist for children. My health was great and then it wasn’t — I bounced between the two extremes frequently. My doctors were nervous about my “uncontrollable CF” so the next move was a transplant team referral. I was in denial that an evaluation for new lungs was necessary, but I went through with it to appease my doctors.
At this time, I started seeing a therapist. I knew transplantation was something I needed to process with someone outside my support squad. My loved ones didn’t need to know death terrified me. I couldn’t wrap my head around a transplant and I felt so out of control. Processing my feelings in a safe environment was vital to my mental well-being.
How did I arrive at my decision to pursue a transplant? I’m glad you asked!
Transplantation is a deeply personal decision. I knew I had to find solitude (with God) to hash out the decision, so I removed myself from distractions, outside influences, and people’s opinions. When it came down to it, I was the one who had to endure this surgery and the life that came with it. I needed to come to a place where I could handle and undergo the unknown.
I also avoided researching the details of the surgery I was about to endure. Ignorance is bliss. Self-awareness is essential to knowing what types of information you can and cannot handle. Avoiding certain bits of info is not weakness, it’s a survival tactic.
I wrestled with my decision. Could I survive this process? It was overwhelming and bigger than I could handle through personal will alone. I’m grateful that my faith, family, and friends carried me through.
I had to come to that place of total surrender, of handing the situation over to God and committing to doing whatever it takes to live. If I hadn’t, I know I would have died. I had several close calls with death, but my determined spirit saved me.
I told a few close support people that when I wanted to give up, they’d need to remind me of why I was undergoing the transplant. To sustain my mission, it was crucial that I built a team of individuals who understood my will to live and held me accountable.
Despite my relentless push to survive, I wasn’t prepared for a new life that would surpass my wildest dreams. I never had an idea of what it was like to take a slow, deep, easy breath devoid of congestion, wheezing, and crackles. The memory of learning to breathe normally brings me to tears. I’ve come so far.
I know what desperation feels like. I know how scary this whole process is. I also know that I would have made a mistake by rejecting the risk of getting a transplant. I would have died without one. Today I am grateful to still be here. Having the opportunity to live (twice) in a brand-new way far surpasses the pain of the process. If given the choice, I would choose this transplant life again. Every time.
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