This is a pandemic of uncertainty. In the meantime, I think our patients need us more than ever.
“How do you deal with uncertainty?” That question was posed to me during my rheumatology fellowship interview.
I lied and said, “It drives me to try to figure out solutions to questions.” Had I been honest, I would have said, “Terribly.”
Uncertainty is uncomfortable. Uncertainty keeps me up at night. I like control and planning and knowing what is coming next. Had someone clued me in that I was choosing a subspecialty defined by uncertainty, I might have chosen otherwise.
I’m 15 years into my career, and I’ve become more comfortable with this disquieting feeling. I talk about it with my patients. We work through uncertainty surrounding diagnosis, treatment and prognosis. We share the discomfort together and figure out solutions. But I found out recently that when uncertainty becomes personal during a pandemic, it is unbearable to embrace.
Anticipatory anxiety about COVID-19 mounted, and there was little to do to take control. The first cases in Pennsylvania were in my county, and the numbers were just starting to climb in the second week of March when I took my turn covering hospital consults. Barely any testing was available.
As I moved through the hospital halls, I pushed elevator buttons with my elbows and debated the utility of a physical exam. I donned a mask, but really only to cover my residual post-viral cough from an upper respiratory infection in early February. I would lower the mask from my face as I paused to read emails, checking hourly to see what events were being canceled next.
My medical group tried to pre-screen patients for symptoms, but patients came in coughing and told me in the office of their recent travels. When the governor put the county on lockdown and closed the schools, we canceled visits for the following two weeks, but came in for one last Friday of seeing patients. For those who showed up, I would sit with a mask on, six feet away, without laying hands on any of them.
COVID-19 Comes Home
On Sunday, I played basketball in the park on a beautiful spring day. But by the evening, my post-viral cough insidiously transitioned to something deeper. I was achy. I stared at the thermometer in disbelief as it registered a temperature of 101.
I had to convince the department of health that I should qualify for rapid testing by virtue of rounding in the hospital and seeing patients with pneumonia, even though none of them had been tested or recently traveled to China, Korea, Italy or Iran. The surreal experience of drive-through testing was frightening. A nurse in full hazmat suit swabbed my nose through the open car window while another counted to 30.
I drove home. I waited. I couldn’t smell dinner or the next morning’s coffee, and the results came back positive.
I’ve never loved a nurse more than the one who stuck that IV in my arm. As a patient with a communicable disease with no effective treatment, I say that someone who leans close to me to help earns my eternal gratitude.
What would this mean for everyone around me? Fear and guilt washed over me.
My office was professionally cleaned. I prayed my mask had been enough to protect others. I texted friends, neighbors and colleagues, all of whom asked, “How did you get it?”
Of course, I still don’t know. It could have come from one of those coughing patients I saw, from one who hadn’t started showing symptoms yet or from one of the febrile patients my husband, an oncologist, saw the same week—or from the supermarket. How should I know?
“It’s COVID, not chlamydia!” I shouted at my phone.
I answered only the most supportive and caring texts and those from people who offered to bring dinner for my family.
I was unclear how to protect my family. As I realized I should separate from my family, my husband got rapid testing through his workplace and was also positive. He had no fever, but he was tired, had a headache and coughed. He moved into our office.
The fear of decompensation was constant. Three days in, I could barely walk from my bed to the bathroom. I would wake up drenched, shivering and still febrile. Trying to take in a full breath hurt. Anorexia and abdominal pain worsened with each fever spike. I tried to lie prone but felt more comfortable on my side. A 24-hour day narrowed to the six-hour intervals between acetaminophen doses. I couldn’t muster enough energy to shower, and I wondered if the loss of smell served an evolutionary purpose.
Given the available evidence, I considered taking hydroxychloroquine, but thought, “That’s my patients’ drug. There’s a shortage for them.” I spoke with my health systems’ chair of medicine and wise infectious disease doctor, Lawrence Livornese, MD. He agreed with my decision to start hydroxychloroquine and asked me to watch my oxygenation. Despite my uncertainty, I swallowed four 200 mg doses over 48 hours, but stopped after vomiting.
I tried standing at the window to watch my 10-year-old daughter dribble her basketball, but after 30 seconds, I was dizzy and needed to lie down. The next time I saw her, she was at the bedroom doorway and I asked what she had for lunch. She told me it was 9 p.m. Virtual hugging from the doorway became a nightly ritual. She would smile at me with sad eyes each time and bravely turn to go.
On day 7, my son started to cough. It was a terrifying sound. He had a fever. We stared at him. We asked, “Are you feeling short of breath?” He looked at us, panicked and started to cry, answering, “Well, now I am!” He rejected a virtual hug, but accepted the ice cream and cookies the neighbors dropped off. That night, I listened to the three of us coughing. Four days later he was better.
Worsening Illness Before Recovery
It was completely unclear when to go to the emergency department. But on day 10, I developed emesis with every coughing fit. I had lost 9 lbs. I felt more tachypneic, and I was too dehydrated to move. I waved the white flag.
From the emergency department ambulance bay, a nurse escorted me through an empty waiting room. My chest X-ray showed a likely secondary bacterial pneumonia, and I got fluids and doxycycline. I’ve never loved a nurse more than the one who stuck that IV in my arm. As a patient with a communicable disease with no effective treatment, I say that someone who leans close to me to help earns my eternal gratitude. The fluids were magical, and my husband picked me up to go home.
The next week brought slow improvement. The cough continued, and I was overwhelmed with fatigue, but I ate and showered. I downloaded the telemedicine app, and my amazing colleagues encouraged me to heal and wait to go back to work until I felt much better.
On day 20, I was gripped by exertional substernal chest pain, and my newly acquired pulse oximeter read 88%. I didn’t want to think about my differential diagnosis. I went back to the emergency department, which looked different 10 days later: A triage tent outside was equipped with six-foot markers in the waiting line. There was now an entire COVID intubation area, with diagrams outside each room showing where each member of the intubating team should stand. When I was taken for my computed tomography (CT) scan, I was wheeled past two rooms where patients were getting intubated. I could only see eyes through all the PPE, but I could feel the dread. The sounds of ventilators, muffled voices and coughing had replaced the usual noise of the emergency department.
I had a normal electrocardiogram, a normal troponin and a CT chest showing only the well-described groundglass changes and no pulmonary embolus. No one knew whether I had ongoing viral replication, reactive airways or my own mini-cytokine storm (which I decided to call a cytokine drizzle, because it wasn’t quite as bad as a storm). I wasn’t sick enough to be admitted and was sent home with albuterol.
After three days of staying in bed to avoid recurrent symptoms, I decided I needed an actual doctor instead of texting friends and colleagues. I set up a telemedicine appointment with a trusted pulmonology colleague. Just seeing his face over the computer brought me comfort. His humanity extended through the screen, as he listened to my story thoughtfully. He took me through his thinking, and he started me on prednisone. Another of my patients’ drugs, but to be fair, also his.
My husband and I marveled at his bedside manner, more impressive when transmitted through a tiny screen. It was a lesson from a master clinician.
With the prednisone, my chest cleared over 48 hours, and I started to drink in full breaths and accept residual pain and tachycardia as deconditioning. What helped most with the uncertainty was good medical care.
Over the past two weeks, I have continued to wait to see what happens next. It is all I can do.
A New Normal
I have started to conduct telemedicine visits. The familiarity of seeing my patients, despite this new method, is reassuring—although exhausting. The usual algorithmic decisions are completely disrupted. What should we do with your biologic when your autistic son works at a supermarket? Why did you stop your biologic just when we finally got your disease under control after a year of trying? No, it’s not okay to wait to check labs if we just adjusted your methotrexate and you simultaneously started on metformin. Do we give you your rituximab for granulomatosis with polyangiitis to keep your lung disease from flaring or hold it to avoid suppressing your immune system? I dread the conversation I’ll have the next time I need to start someone on hydroxychloroquine.
I am plagued by decision fatigue and uncertainty.
So I try to channel my pulmonologist.
I try to reach through the screen and bring comfort and good decisions to my patients. We end each visit with a plan for another one, and we will see at that time what a visit looks like.
The world is struggling. Medicine as we know it is struggling, and we cannot fathom what the future holds. This is a pandemic of uncertainty. In the meantime, I think our patients need us more than ever. If the nurses, doctors, patient transport and X-ray technicians put their lives on the line to help me, the best way I can help them is to help my patients.
Yesterday, I smelled garlic. This morning, I finally walked all the way around the block. It took 25 minutes, but I can breathe.
The world will change, and so will we. We will collectively grieve. But our patients will still need rheumatologists and our medications. We will fumble and struggle and find ways to be there.
Of this, I am certain.
Belinda Birnbaum, MD, is a clinician with Bryn Mawr Medical Specialists Association & Bryn Mawr Hospital, Main Line Health, Pa. Dr. Birnbaum was born and raised in Brooklyn, New York, and trained at New York University and the Hospital for Joint Diseases. She is thinking of her colleagues and friends there, especially the rheumatologists turned COVID-19 hospitalists. They are true heroes.
With special gratitude to my amazing group, Donald Miller, MD, Stephanie Flagg, MD, PhD, Pierre Minerva, MD, Kendra Zuckerman, MD, and Liliane Min, MD, as well as to master clinicians Lawrence Livornese, MD (chair of medicine, Main Line Health Department of Infectious Diseases) and John Hansen-Flaschen, MD (professor of medicine, Perelman School of Medicine, Department of Pulmonary Medicine).
The ACR has created a robust COVID-19 resource page for rheumatologists and rheumatology professionals.
Also review the ACR’s Guiding Principles for Scarce Resource Allocation During the COVID-19 Pandemic: The Case of Hydroxychloroquine.