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.
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.
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