I’m a pulmonary physician, and my clinical area of expertise is Interstitial Lung Disease (ILD), a group of lung disorders comprising over 200 possible diagnoses with the potential to irreversibly scar the lung. This diagnostic puzzle must be solved for each patient, and it must be solved carefully; an incorrect diagnosis could have the same outcome as the worst diagnosis.
For many, without a lifesaving lung transplant, only a few years are left. For others with the right diagnosis, a good measure of luck, and the right treatment, decades may stretch before them.
I’m lucky because I get to be there with people at the best moments of their lives. I get the honor of carefully removing an oxygen cannula from a patient’s face. Oxygen is for many a scarlet letter of serious disease in addition to a heavy burden and a limiting tether. I imagine the weight that lifts from tired shoulders when it’s gone.
As much as I’m lucky to have those moments, I struggle with their mirror image. For some patients, disaster strikes. All patients with ILD are at risk of a sudden exacerbation of disease; for most, a deadly diagnosis.
COVID-19 has only heightened that risk.
I remember in my first year as an attending physician, a man in his late 50s arrived for his first appointment for ILD care wearing a moisture-wicking athletic shirt and an exercise-tracking watch. He was lean and fit, with tawny skin and a calm, thoughtful nature. I liked him right away, and as I took a medical history I presumed many more appointments ahead and a long course of illness. I omitted the information about the constant risk of exacerbation of disease, leaving this difficult discussion for another day.
Two weeks later, a colleague called me down to intensive care. There was my new patient, unconscious on life support, his tearful wife at the bedside. He’d had an exacerbation of his disease, and despite our best efforts, he didn’t survive. Through a curtain of tears his wife asked a question that seared my soul. “Why didn’t you tell me this could happen?”
Now, I remember her face when I meet new patients with ILD. It’s hard not to.
In the beginning of the pandemic, after I strenuously asserted the particular risk of COVID-19 for their lungs, my patients locked down to a degree many others didn’t. They discontinued their usual lab draws and in-person pulmonary function checks. During our telehealth visits, they told me about extreme measures. Some went many months at home alone, essentially shut-ins, with no visitors. One of my patients laid down a line of masking tape through the middle of her home. Her husband, an essential worker, lived on one side, she on the other. I said, “I’m glad you’re being so careful.”
But now, even for those with the most to lose, COVID-19 fatigue has set in. When you have a potentially deadly disease, it’s hard to tell your family they can’t visit you. It’s hard to say no for so long. And so, even as the risk in their communities escalated, they started to say yes.
For me, the hardest part of the pandemic was the first wave, when uncertainty combined with a deluge of new cases was almost too much for our health care team to bear. Our intensive care team, in particular, wore itself ragged. My hardest moment occurred after a long resuscitation effort failed. Sweaty and gasping behind a restrictive N-95, I was exhausted from CPR, sitting on the floor outside the patient room. A colleague happened by, “Did you see what’s going on in Harrisburg?” Photos revealed maskless protesters gathering on the state capitol steps, protesting social distancing restrictions. The wave of exhaustion and nausea that washed over me is something I will always remember.
Now, a year in, the uncertainty and overwhelming emotion of this pandemic persists. Since Temple is an expert lung center, our patients live all over the tristate area. For my outpatients, if they are diagnosed with COVID, they are typically rushed to their local hospital. Their diagnoses reach me via my inbox, where messages highlighted in ominous red notify me of yet another case of COVID-19 in a fragile lung patient.
With COVID-19, eight of 10 of these ILD patients will be hospitalized, often for long periods. Their risk of death is 10 times greater than the population at large. With each red flag in my inbox, my heart stops as I picture the face behind the notification. I pray I never get the second ominous notification: “We are sorry to inform you that your patient has died.” Because transfers between hospitals in the time of COVID-19 are rare, I don’t have the privilege to be at the bedside for most of my outpatients.
During the lull between the two large waves of infection in Philadelphia, I took a week’s vacation at a remote cabin with my husband, where long nature walks soothed my rattled soul. When I returned and opened my inbox the following Monday, three of my patients had died, and I realized the emotional impact of a week’s worth of notifications at one time.
Since then there have been good stories and bad. Happy endings and sad. For some of my sickest patients, their survival has seemed miraculous. As the pandemic drags on, the light of vaccination finally dawning over the horizon, I fervently hope that our community can keep its doors closed for just a little longer, can hold out just a little further, protecting the most vulnerable among us, and with them, my heart.
Erin Camac is an assistant professor of pulmonary and critical care medicine at the Lewis Katz School of Medicine at Temple University.