When you think of the city of Buffalo, N.Y., I’m sure you think of snow, excellent wings, crashing through tables, and the city of good neighbors. While I think of that now, for a very long time, the only thing Buffalo was to me was where my cystic fibrosis care center was. It wasn’t until I was taken out on my first real date to Canalside that I realized the city meant more than pulmonary function tests (PFTs), throat cultures, and sterile rooms. Navigating CF on its own is a complex challenge, but managing CF in a rural setting is its own animal. For those of us living in the “boonies,” distance becomes another symptom of the disease.
A routine, quarterly appointment can become similar to an Olympic event.
If it’s a “Lung Center Day,” it means you can prepare for a day of heavy travel; significant time off work or school; spending money on gas, food, and parking; sitting through a lengthy appointment; and hoping you have enough energy left for a little treat afterward. More often than not, though, that treat is a drive-thru dinner because you’re too exhausted to do much else.
That doesn’t include the labs, X-rays, and scripts you either fill that day or try to squeeze into an already busy schedule later.
Truth be told, there have been times when the effort required to access in-person care has felt overwhelming enough to make me question if I really need to go that badly; or if I can stretch it a little longer. This isn’t because I don’t value my health, but because every appointment requires so much planning, energy, and time. Thankfully, I’m in a position where I can drive the over-an-hour journey to my lung center — for others, this barrier might keep them from seeking specialized care altogether.
Like many people with CF living in a rural area, I’ve wondered what would happen if I suddenly needed urgent care. How would I reach help in time? What hospital would I go to? How reliable is the GPS in an ambulance in an area where service drops without warning? Rural emergency departments are staffed by dedicated and knowledgeable professionals, but CF is a rare disease, and many providers have limited experience treating it — especially in an acute situation. In those moments, the nearest emergency room may not be the most appropriate place for specialized care, yet the nearest CF center may be hours away.
The rise of telehealth helped bridge many of those gaps. Suddenly, those of us in the sticks could stay connected to our care teams without losing an entire day to travel. It offered the flexibility that many rural patients desperately needed. A cough that sounded a little funky could be addressed from the comfort of our own home. I was able to see my provider over telehealth, and then she advised me to visit the emergency department. She was able to communicate directly with the hospital and send my health records and her recommendations ahead of time. Instead of navigating a complicated situation on my own, my care team was able to bridge the gap before I even arrived. The process was far less overwhelming for me than it otherwise would have been. As access to virtual care becomes more limited, many of us are once again feeling the weight of those long distances.
Don’t get me wrong — I adore living in the country and wouldn’t change it for the world. My life has been shaped by nature, outdoor recreation, and falling asleep to wind blowing and frogs croaking.
At the same time, living rurally has highlighted the health care disparities that exist for people living outside of major population centers. Accessing specialized care shouldn’t be the challenge it is for those who live far from urban centers.
While my care team is exceptional at accommodating and meeting me where I’m at, both physically and emotionally, I know there are those who may not be as fortunate. Distance may not appear on a medical chart, but for many rural patients with cystic fibrosis, it shapes nearly every aspect of care.
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