Lung function — typically measured by forced expiratory volume in the first second (FEV1) — is the boogeyman for people with cystic fibrosis (CF). Whether it’s our lung function, our weight, our BMI, our liver levels, or our glucose levels, our lives are an assemblage of numbers, values, qualifiers, and measurements.
It’s easy to feel reduced to something less than yourself when you’re constantly evaluating these values, wondering what your lung function will be no matter how you’re feeling. Or if your liver levels will be elevated at your next appointment. You can feel like you’re not guiding your life.
A few years ago, a series of positive fortunes propped up my health. In January, I was enrolled in a clinical trial — and received a medication — investigating a potential anti-infective for Pseudomonas aeruginosa (which I’ve cultured for many years). In February, I had sinus surgery followed by a two-week tuneup (my doctor likes to do tuneups following sinus cleanouts to maximize benefit). In the ensuing months, I was training for a marathon.
From January until July, I watched at each appointment as my FEV1 ticked upward, from 85 percent to 97 percent. That number shocked me. I hadn’t seen such a high lung function in years and, frankly, never expected to get to that point again.
I was hesitant to run with this feeling of optimism. Had I really recovered 12 percent lung function? Would that become my new baseline? Based on the clinical trial alone, I wasn’t sure that this number was officially a new baseline. I was optimistic, yet cautious. I told myself I was going to push hard over the next three months. I believed that with a lot of exercise I could hit 100 percent FEV1 for the first time since being a teenager.
I played basketball, took up boxing, and experimented with other forms of cardio on top of my lifting regimen. I went into my October appointment with high hopes. I felt like my lungs were the strongest they’d been in a long while.
Apparently, they weren’t.
I was at 86 percent.
What would’ve been a baseline pulmonary function test and nothing to be worried about nine months earlier was instead devastating. An 11 percent drop in three months would typically be regarded as an exacerbation. If my doctor believed that mid-to-high 90s was my new baseline, it would be treated with antibiotics.
For this type of appointment, my reaction was admittedly not proportional. It wasn’t a big deal — or it shouldn’t have felt like it was. This is how numbers can mess with your head, though.
I left that appointment disheartened. When I was walking up some stairs afterward, something strange happened: I was short of breath. It didn’t make sense. The day before, I played basketball and remarked to my colleagues, “My lungs feel amazing. I really might be 100 percent tomorrow.”
It was then that I realized I was legitimately anxious. After doing pulmonary function tests for as long as I could remember, that number still dominated the real estate of my mind regarding my health status. I talked to my doctor, was diagnosed with clinical anxiety, and developed a treatment plan.
With CF or without, our baselines are always changing. In life, there will always be adversity. With clinical anxiety, adversity can appear so much bigger than it is.
There is no single way to begin taking care of your mental health. For me, the biggest step was acknowledging that it was real. It was being honest and gentle enough with myself to disregard my prior beliefs and concerns about mental illness. It was seeking help.
It saved my life.
Follow along with my other writings on my humbly named site, www.trelarosa.com.
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 Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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