Navigating the waters of post-COVID survivorship

Denise Bockwoldt
Chicago, Illinois, United States

 

A lone boat on the water
Photo by Josh Sorenson on Unsplash.

On the TV news, COVID survivors are being rolled out of the hospital in wheelchairs, applauded and cheered on by a crowd of hospital staff. “They’ve recovered!” the reporter announces happily. It is a hopeful sign for everyone who fears this virus, and for healthcare workers a ritual that affirms the life-saving nature of the work. Yet as a healthcare provider myself, my inner cynic also wonders if the moment is being exploited just a little for a marketing opportunity.

I am a family nurse practitioner working in a community health center. I care for patients with COVID, but I do not perceive myself as a “front-line worker.” I am not risking my own life keeping intubated ICU patients alive or holding the hand of a person who is dying alone. I am not screening long lines of worried people with an uncomfortable nose swab. I am a primary care provider—a “PCP.” For my co-workers and me, life has been upended, but not terribly so. Counterintuitively, we do not allow face-to-face appointments for people with coughs and fevers. Callers are vetted by telephonic triage to see if they meet the criteria for COVID-19 testing and advice. Clinic arrivals are screened in the parking lot to make sure they are well enough to enter.

It all seems so backward.

Everyone is familiar with the phrase “follow-up with your PCP.” The PCP is ground zero—the medical home where one returns after being displaced from somewhere else—the emergency room, the hospital, a specialist. It is the place where the responsibility for preventive care and acute and chronic illness management converge. It is also where post-COVID survivors go once they are declared “recovered.”

But have these patients really recovered? As I call my patients for their follow-up checks, I have noticed something new and worrisome—a post-COVID list of needs, what might be called “post-COVID survivorship.” Survivorship is a term usually reserved for cancer patients, a process of living with and after treatment, often with uncertainty and life changes. But it has never seemed more applicable to an emerging pattern of physical and psychological sequelae as it does in these patients who have survived an illness brought on by a novel and highly contagious virus.

Poor appetite? Check. Sleep issues? Check. Chronic pain? Check. Emotional changes? Check. Check. Check. “Why does my leg hurt? Could it be a blood clot?” “I was on blood thinners in the hospital. Should I be on them now?” “How will I find the energy to go to work? My boss says a month off is plenty and I need to go back.” “Why am I coughing? Do I still have pneumonia?” “When should I get another chest x-ray?” “When will I smell again?” “Will my taste buds come back?” “I have a rash! What does this mean?”

In addition to the clinical ambiguities, surviving a pandemic comes with its share of uncompensated paperwork. Patients request letters for their employers documenting they are no longer contagious. Others need medical leave forms completed that demand precise predictions and follow-up plans. Insurance companies want documentation confirming disability.

Sadly, and frustratingly, there are no answers yet. “It’s a new infection,” I tell my patients. “We are learning as we go.” Reassurance seems to help and not help. With every patient story of survivorship shared, we learn more about the recovery process. But I continue to worry. When will it be safe to allow the COVID survivor back in the clinic? Back to work? Do I rely on the antibody test? I worry about my own liability. What if I sign this form and the infection recurs and they infect someone else?

I ponder the role of the PCP in this pandemic, and how we can successfully adapt to this new normal. Nautical metaphors are common in the medical vernacular, and I realize that our experience in pandemic history fits that imagery well. After the field hospitals close, and the daily TV briefings wrap up, PCPs will still be there keeping all afloat. We are like the captains on a life raft evacuating those from a shipwreck to safety. Sometimes the survivorship journey to shore is choppy and sometimes smooth. It might be a quick trip or a long voyage. And without a map to guide us, we must navigate as we sail. And it is especially crucial on this journey through post-COVID primary care that we ourselves stay buoyant, for every lifeboat has its maximum capacity.

 


 

DENISE BOCKWOLDT, Ph.D., APRN, FNP-BC, is a primary care nurse practitioner at a community health center serving vulnerable populations in Cook County. Her research has focused on adapting to the self-care demands of living with a chronic condition, particularly type 2 diabetes. She is a member of the Advisory Council for the National Health Service Corp with an interest in workforce issues in primary care.

 

 

Spring 2020  |   Sections  |  Infectious Diseases