Why It Didn’t Matter That My Future Wife Had CF or a Lung Transplant

I didn't know until date four that my future wife had cystic fibrosis and was a lung transplant recipient. She was too wonderful for me to care.

| 5 min read
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Nicholas Kotowski
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When you meet someone special, do you really know they are going to be your one and only? A fool would tell you yes after the first date. That same fool would be the one who is filled with love lasting more than an eternity.

Looking back on my first dinner with Amber, I can tell you she was someone special -- still is today. She is the love my soul craved on its long walk across the bridge of loneliness. We've all been there, looking for that one -- analyzing ourselves and going crazy trying to figure “love” out. I'd love to say that I was the fool who could predict the future, but I can't because part of me -- the Capricorn inside -- is probably the most finicky version of the astrological symbol you'll ever meet. What I can say is that I knew Amber was like no one else, and in due time I'll share how that realization came to fruition. For now, allow me to invite you into my pre-Amber world.

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Life was in full swing. I loved my job. I was renting my first non-studio apartment. I had bought my first new car, and everything was rolling forward. Stop the carriage, I'm forgetting something in my exquisite formula of success. Love. I didn't have it. But where is the time for that when one has everything they need? Ah, that's the kicker. I didn't have it all, and more than anything, I wanted what I never knew existed -- to be loved unconditionally. Going to bars, striking up side conversations at the gym, and building a relationship at work were not my cup of tea. That's when I turned to the almighty wasteland of knowledge and wisdom -- the internet.

I tried website after website, and it felt like I was entering my name in a meat raffle. About to quit or, rather, try a little less -- because we Capricorns don't know the word surrender -- Amber returned a genuine response. I must have read her email out loud 40 times before I responded. Honestly, I don't even remember today what it said, but it intrigued me enough to write a response and the rest is history.

Our first date was at a place called “The Garden.” (It's “Detroit Liquor” and “Yard Ale of St. Pete” now.) The romance of wonderful conversation, nervousness, and exquisite food are etched in my memory.

That night, I didn't know two things -- first, I was falling in love and second, Amber had cystic fibrosis.

In fact, she had gone through a living donor lung transplant, a more experimental procedure at the time. I found out on date four and paid it no heed because to me, Amber was Amber and not someone with CF. She was alive because her brother donated one lobe and her mother another. I'll cover that another time because this article is about my version of the Firehouse song: “Love of a Lifetime.”

Fast forward more than a decade. As I sit contemplating the amazing adventures to choose from that showcase what life after a lung transplant looks like, I'm left thinking about the smile on Amber's face as we tackle every known fun challenge together: skydiving; downhill skiing; hang-gliding; obstacle course racing (jumping over fire and crawling through heavy mud and under barbed wire); mixed martial arts; buying our first, second, and third houses together; and me stepping on her dress at the altar and hearing the ripping sound the train made. Were there pitfalls and snags along the way? Sure. What great story doesn't have those? But those will be expounded upon later.

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For now, the most important aspect of this story is that CF is physically debilitating and even after a transplant, it is never gone. CF after a transplant is also mentally debilitating, if you let it be. That's where hope comes in and love triumphs. Together, we are an unstoppable force of boundless exploration. As Aristotle put it: One soul living in two bodies. With each step we take on the winding path called life, we take turns guiding each other through our fears.

My back is strong, my shoulders are available, and we lean on each other through thick and thin.

Amber is determined and puts more on her plate than one can ever possibly tackle in any given day, challenging me to reach for unknown planets. I love her for that because without her, I wouldn't be writing this post. More importantly, I wouldn't be the fool I referenced earlier.

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Topics
Lung Transplantation | Social Life and Relationships
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Nicholas is the husband of an amazing woman, Amber. He met his wife on the internet, not knowing she had CF or had gone through a lung transplant. Once he found out, life continued as normal because he understood CF does not define who a person is. Together, they wish to help people explore what life looks like after a lung transplant.

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