Tré LaRosaComment

Day 23 of #31DaysOfTré – CF Appointments

Tré LaRosaComment
Day 23 of #31DaysOfTré – CF Appointments

When I think back to my childhood, I realize that one of my biggest sources of anxiety were my CF appointments. Since I was so healthy, I wasn't consumed with my CF all the time and, aside from my treatments, I didn't think much about these. I resented my appointments because they were reminders of my life with CF. As I get older, I've started to understand that these are opportunities to take stock of my health. 

At routine CF appointments, you see a lot of providers. I see a dietician/nutritionist, a pharmacist, a therapist/social worker, a doctor, and whomever else feels the need to stop by and check in. Since I see these providers usually half a dozen times a year, I've become close with all of them over the years. 

Each appointment, I perform a pulmonary function test or a spirometry. This is how my lungs are measured. There are several measurements in these PFTs, but there's one main one that we talk about. Whenever I say "lung function," I'm referring to my FEV1, or "forced expiratory volume in the 1st second." This is the measurement that helps to measure lung disease, long-term survival, and other important aspects of life with CF. 

Over the last couple of years, my lung function has been relatively stable between 80-90%. For aa 24-year-old with CF, that's considered to be mild lung disease. I take a lot of pride in my compliance and adherence to my treatments and exercise and so I worry myself about my lung function quite a bit.

Last year, in January, I did a study trial for a bacteria in my lungs – Pseudomonas aeruginosa, one of the most common ones in CF – for an upcoming antibiotic. After this trial, my lung function improved significantly for me, so my lung function has been a stressor for me over the last year. In November, my FEV1 reached a looooong-time high of 97%. 

Today, they were 89%. A year and a half ago, I would've been thrilled with 89% because my baseline was about 85%. I've been stressing about my lung function a lot, but I feel great, so I know that that's just a number. FEV1 can vary drastically day-to-day and there is a 3-5% margin of error per measurement anyhow. So, it's just that, a number, that is used to be a part of care, but it isn't the only part.

My appointment today was a fine one. It wasn't great, but it wasn't terrible. I'd like my baseline to be 95%, but it isn't the only way I'll be content.

There is a lot more that goes into these appointments, but I feel as though it would only get clunky and superfluous if I discuss more of the minutiae of these appointments.

TL