I recall the days in March that continue to leave a mark

We typically celebrate an anniversary, but when you live with a chronic health condition like cystic fibrosis (CF), your relationship to certain days on the calendar can be a bit more complicated. They may not be milestones to celebrate, but they can still serve as reminders.

I’m thinking this month of a few life-changing anniversaries that I continue to carry with me. Some, I remember; with others, my body reminds me, because, as I’ve found, the body really does keep the score.

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My body remembers

Nine years ago, my health tanked rapidly. I’d been discharged from the hospital just a few days earlier and was finally home, feeling wonderful about being in my own space again, sleeping in my bed, and using my bathroom in peace. But when I went to make a trip there from the couch, a distance of only about 50 feet, I found myself more breathless than usual. I used my pulse oximeter to measure my oxygen saturation and found it was 72% — alarmingly low.

I called my CF clinic to ask what to do, even though I wanted to write it off as tiredness or a simple fluke. I was told to come in and that I would be admitted to the hospital. I’m glad they made that call.

When I got to my hospital room, my doctor increased my supplemental oxygen, first to 2 liters, then 4, and then to 6 liters, but my oxygen saturation didn’t change. I was told I’d be moved downstairs so I could be monitored better and provided with more oxygen.

I had never been downstairs to what I learned was the intensive care unit. This uncharted territory was terrifying, to say the least. I didn’t know then that I wouldn’t make it back to my regular floor.

My lung function rapidly declined, sending me into respiratory failure. I was on the highest possible flow of oxygen. I couldn’t walk 5 feet without desaturating, and had to recover my breath despite the high-flow oxygen. I lost the ability to do anything independently and depended on others for simple daily necessities.

On March 18, 2017, I was transported to Boston so I could complete final testing to be listed for a double-lung transplant. After four hours in the back of an ambulance, I was admitted to the ICU in Boston so I could be emergently listed.

After jumping through several hoops, I was officially on the transplant list by March 21. Everything got real, real quick. The next day, I nearly died. I woke up that morning unable to breathe or talk. Thirty doctors filtered in and out of my room and planned to intubate me because my breathing couldn’t be regulated.

I turned to my mom, who was staying with me, and whispered: “It’s time to rally.” And I did just that. I got the right medication that turned the whole situation around in minutes, thank God! That moment is still fresh in my mind.

Although I am immensely grateful that I lived through those days, they were profoundly traumatic for me. While I know this is part of the journey of living with a chronic illness, it doesn’t make it any easier.

March 2017 was the worst time of my life, but five months later, I received new lungs, and everything changed. I continue to learn every day what it means to live in gratitude, even as I hold on to grief.

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.