I’m Determined to Meet the Challenges of Living With Cystic Fibrosis

“This can’t be happening right now.”

It was freezing outside, and once again I was in a daze, talking to my doctor while planning a trip. It was the second time, albeit for different reasons, that a trip I’d desperately been looking forward to was threatened by medical issues.

The first time it happened, in January 2014, I was in college. I’d been coughing for a few weeks and spitting up mucus that looked more like vomit. Sometimes it was vomit. That winter was harsher than any I could recall. It was snowing more frequently, and the frigid gusts of wind took my breath away. The following month, I was supposed to travel to Boston to participate in the Harvard National Model United Nations.

Recommended Reading

July 14, 2022 Columns by Nicole Kohr

Why I Developed a Fear of Airplanes as an Adult With CF

As much as I hated its sports teams, Boston was always on my list of cities to see, even in the winter. When I went into Manhattan for a doctor’s appointment, my pulmonary function test (PFT) numbers were alarmingly low due to a combination of the winter, my asthma, and, as I would find out a week later, a pseudomonas infection, a common lung infection for people with cystic fibrosis (CF). My doctor said that if I couldn’t at least get the coughing under control and my PFT numbers higher in two weeks, I wouldn’t be able to go on my trip to Boston.

Boston in the winter. (Photo by William Ryan)

“This can’t be happening right now,” I told myself.

However, the show must go on. I was the leader of my delegation, and I wasn’t going to let my classmates down. Through perseverance and due diligence, I was finally able to go.

That experience changed my life so much that the following year, I maneuvered my way into signing up for a class that would allow me to return to the event. The most profound moment for me at the first one was when we entered a ballroom and students from Venezuela’s most prominent political college were protesting their government. Talking to these students gave me a newfound appreciation of where I live, and it motivated me to take care of myself.

As I mentioned, this happened twice. Last November, I was in the hospital for pneumonia. While there, I had to face a reality I’d wanted to ignore for a long time: I have CF-related diabetes. In a few months, my wife, Gina, and I were planning to go away for our honeymoon on the Caribbean island of Antigua, and I viewed this as another roadblock.

The beautiful Caribbean island of Antigua, in the winter. (Photo by William Ryan)

I’d never been out of the country before, so I was eager to see life elsewhere — even if it was at a resort. After my hospitalization, my doctor, Gina, and I formed a plan in which I would try to gain at least 20 pounds and stabilize my blood sugar level, which was around 330 mg/dL, so that I could go on the trip.

By the time February rolled around, I had gained those 20 pounds, and my blood sugar level was generally between 120 and 175 mg/dL, which wasn’t what a healthy person’s would be, but was much better than during my hospital stay.

We had a beautiful honeymoon, and while on the trip, we took a tour of Antigua. The rolling hills and old colonial forts were beautiful to get lost in. While looking out at the sea, I thought about how precious life is. Life may not always be a paradise like the beaches of Antigua, but just like the ocean, the tide rolls on.

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.