When I was born in 1970, my life expectancy was only 17 years. But I was lucky to have parents, friends, and an incredible doctor who never let me believe the life I hoped for was out of reach. Throughout my teens and early twenties, I balanced repeated hospitalizations and worsening lung function with college, friends, and living out my dream of moving to California. I knew I was on borrowed time, but out there I really found my footing with much needed independence. Living out loud as much as possible was my north star.

In 1996, I was told to consider having a lung transplant sooner than I’d planned. My infections had become highly resistant to the arsenal of antibiotics that were available back then. So I moved back to Boston to be near my support system, and I got listed. But while I waited, I kept working and traveling, got a puppy, and started a 401k. I was scared, but I was also happy.

In May 1998, I planned a trip to Napa Valley to meet up with a friend. After all, who wouldn’t plan a solo trip across the country while on the waiting list for a lung transplant? (I knew I was far away from getting the call — the way the waiting list worked was very different back then.) 

Alone on the plane, I was feeling quenched with life, although a bit tired. I always felt really grateful and reflective whenever I travelled, and this trip was no exception. About five minutes into the flight as the cabin pressure changed, I realized something was wrong. I was having trouble breathing and had a lot of chest pain. I thought, “I must have a plug stuck, I’ll go cough it up in the bathroom.” But just moving made my breathing worse, and I barely made it back to my seat. At this point, I could not speak except in a whisper. I didn’t want to make a scene — because, you know, I was in my twenties, and I just didn’t do that — so I waved my arm until an attendant recognized that I was blue. They got me a tiny, tiny canister of oxygen and moved me up to first class to keep an eye on me. My biggest worry at that point: what if I miss my connecting flight?

As we descended, it killed me to ask for an ambulance. Was I overreacting? I pictured the hotel and the fun weekend I was about to miss. When the paramedics hooked me up to an O2 probe, my oxygen saturation was in the mid-80s. My right lung had completely collapsed.

My optimism might seem ridiculous, but it got me through that flight and a three-week stay in a Detroit hospital. A few months later, I came home to Boston in an air ambulance while my team scrambled to put a transplant in place. On September 21, 1998, I received a living donor double-lung transplant from my uncle and my father’s friend.

Recovery was no walk in the park — I spent two weeks in a coma, and it took two months before I could go home. During this time, I began to practice positive visualization after meeting with some volunteers who taught it in the hospital. I practiced seeing myself recovering and doing well in my life after transplant, healing and happy. Most importantly, I was ready to take my new lungs out for a spin and stay anchored to my belief that life may be hard, but you had to suck the marrow out of it when you could.

Life with CF isn’t easy, but I try to treat every day like a gift. That doesn’t mean I am always grateful or able to find the silver linings and positive spins on all my life experiences. There is often pressure to be a “warrior” or “hero” which I don’t love. 

I think being able to have ALL the feelings — from joy to envy, happiness to fear — is what allows us to have the full human experience. And that is why I do it all. I want to have the full human experience.

Now at the age of 54, I’m approaching a second transplant. Of course, it’s different this time. I’ve been in uncharted territory for years now, with little research or statistics to guide me. My younger version of optimism has been reworked to one based in realism. I am working to accept what’s happening to my body and to allow for necessary adjustments and course corrections. Because fighting your reality is an exhausting way to live.

Sometimes, I think about that young woman on the plane, so full of optimism and life even as she struggled to breathe. Now, I’m a new version of her. And it’s okay. These days, I find joy in the little things — a walk outside, time with my dogs, laughing with my husband, cooking a meal. This is living out loud for me right now. My life is not perfect, but it is mine. It is a gift.

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