It feels funny writing about this. Maybe it’s my new normal – hopefully it is! Last year I wrote about hitting the one year free of a pulmonary exacerbation milestone. It was the second time I hit it since starting Trikfata (the first came during the clinical trial, but was separated from the second time around the sun by a vicious cold that took me down). This time, though, and maybe thanks in some small part to the infection control brought on by the pandemic, I’ve made it a full two years without suffering a pulmonary exacerbation or hospital-based intervention for my cystic fibrosis. I truly can’t even remember the last time that happened. Maybe elementary school, which means about 20 years or so?
By the time I was well into 6th and 7th grade, I was onto a PICC line at least every other year. I still remember the absolute dread I felt when I walked into my doctor’s office after a check up to be told that I would need to report to interventional radiology a few days later. Often those conversations were accompanied by tears, frustration, and anger. It’s not hard to imagine why. Every PICC line, IV antibiotic course, or encounter with health system for the purposes of an intervention represented a disruption to my childhood. I couldn’t go to school normally, go to hockey practice or the Friday night sleepover at a friend’s house. As I aged those disruptions shifted from childhood pastimes to college weekends and football games, to classes and then into the professional world where my career was dependent on maintaining just enough health to keep a rhythm going.
When I finished up at BC, my dad asked me not long after I graduated how much time I thought I missed over my four years on campus because of my CF. It was a tough calculation, but I figured all in I missed at least a semester’s worth, though largely because I finished the tail end of my freshman year in absentia.
One day I plan to look back at my entire life and attempt to quantify the entire time spent on IV antibiotics or total time spent dealing with pulmonary exacerbations. The total is certainly over a year, which means that at 30 years old, I have probably spent a cumulative total of about 5% of my life attached to an IV… at least. That’s a little bit of a shocking figure.
But all of that almost feels like I’ve left it in the past. This milestone that I am achieving… two years pulmonary exacerbation free… feels like the kind of thing I could have only dreamed about when I was stuck in my early twenties. In those days I was such a frequently flyer to the local interventional radiology suite that I knew everyone on the staff by name from the admin, to the radiologists, to the nursing and support staff. Being a regular at a medical center is a weird thing. On one hand, you know and respect the people working in the department. I trusted them and I knew I would receive great care from the team. I was hardly a stranger. In some ways, it was a little bit like a small-town feel. I had heard about their kids growing up, hobbies and sort of everything in between. I mean these are relationships that persisted over several years. But at the same time, it’s a strange dynamic. Becoming close with a doctor and a care team (outside the CF center in this case) necessitates that one is at a hospital quite often, and I was there quite often.
Maybe it’s best to measure the time spent off IV by the things done between courses. In my early twenties when I was granted a couple weeks between IV courses or pulmonary exacerbations, I was lucky if I could count a handful of recreational hockey games, maybe a couple days at the gym, and a date or two with Darcy.
Now, measuring the distance between IV courses is far more challenging. My life has changed in enormous ways since I was last on IV. I graduated from business school, got married, lived through the first 18 months of a pandemic, and am now looking forward to welcoming a son into the world in a couple months.
These past two years have been some of the best of my life.
