It just so happened that the two weeks of our patient simulation fell on a packed schedule. What seemed like an inconvenience (and was indeed an inconvenience!) became a great opportunity to simulate changing environments that we couldn’t fully control.
We began the simulation just before heading to Baltimore, MD for an Annual Summit and Mosh Pit Competition at Johns Hopkins Carey Business School. Before traveling, we had a relatively easy time packing our own lunches and cooking our own low-sodium dinners. The event was catered, and Nick and I did an excellent job of holding up the entire line as we over-inspected the food options, read the back of potato chips, and speculated whether brownies had sodium. We ended the day in a beautiful hotel reception full of champagne, croquettes, and crab, which we sheepishly walked away from.
The following Wednesday, we began preparing for a weekend-long trip to New York. We moved ourselves to Philly, where Nick and I found ourselves in a Whole Foods, once again slowly reading labels. Anticipating a lack of easy low-sodium options on the street and at the event, we spent over $30 on low-sodium snacks for the weekend. Our bus trip to NYC overlapped with one of my personally scheduled medication times - asleep on the bus, I easily missed it. What’s more, the logistics of travel easily took priority in my mind - did I have all my belongings? Where were we going next? On my phone (in the one hand that wasn’t carrying my suitcase), I was repeatedly opening Google Maps, Google Calendar, Gmail - not My Fitness Pal where I log sodium intake, or my reminders, which prompt me to take my meds.
The snacks certainly came in handy, but at the end of the day, concerns over getting from one place to another and the blur of the event itself - meeting new colleagues, designing experiments with my new team under time pressure - crowded out the newly established routines of weighing myself daily, logging my sodium, watching liquid intake, and being exact with my medication intake.
There was another large flaw in my system when it came to travel: the tools I rely heavily on were not always on hand. Firstly, I rely heavily on my phone for tracking and reminders; it was frequently nowhere near me during the weekend event or was packed away in my suitcase while moving around. Secondly, daily weighing to check fluctuations in body weight is crucial for heart failure patients; I hadn’t even considered carrying my scale around with me to and around New York.
It was our good fortune to conduct our simulation during two weeks that were not fully in our control. It is clear that a perfected routine isn’t always enough. Events and travel, be it for work or for leisure, introduce complications - inability to control all daily dietary intake and lifestyle behaviors, competing priorities, and limited access to tools used for treatment and symptom management. These small events gave us a greater appreciation for the constant awareness and vigilance that heart failure patients maintain to adjust to changing situations.