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Experiencing Long Covid as a Physician and a Patient

Zeest KhanThe sound of the drape pulling back, metal rings on a metal rod, rustles a memory. “So,” he says kindly, “I hear you’re an anesthesiologist.” I look up at the physician who has entered the preop bay where I lie on a gurney. I smile under my mask and reply, “Not today.”

I am, of course, an anesthesiologist. Even recently, I was running a successful solo practice, had a hard-earned reputation for clinical excellence, and held leadership positions. I had a healthy marriage, healthy children, and a healthy body. I visited my aging parents regularly and figured out my optimal tax strategy. Nine years out of fellowship, I was in my groove. In 2020, however, I fell ill – likely from Covid-19 – and I have yet to recover. I have spent the past year in bed, in waiting rooms, in hospital gowns. So, that day as I had an IV placed and met my own anesthesiologist, I was not in my physician role; I was a surgical patient with Long Covid. Given that millions of Americans share my diagnosis, you may care for patients like me. Here is what you should know.

Long Covid refers to a constellation of symptoms that remain, often for years, after a confirmed or probable SARS-CoV2 infection. It is popularly known as Long Haul Covid and clinically known as Post-Acute Sequalae of Covid (PASC). Long Covid has significant overlap with an identified but under-researched condition called Myalgic Encephalitis-Chronic Fatigue Syndrome (ME/CFS). ME/CFS has known viral triggers, including other SARS viruses. Symptoms include breathlessness; reduced exercise tolerance; an impaired ability to recover from exertion, known as post-exertional malaise; dysautonomia, often presenting as orthostatic intolerance and tachycardia; hypercoagulability; tinnitus; cognitive impairment; and profound, disabling fatigue.

I remember the day I admitted I was unwell. I had been avoiding the truth, telling myself I was just tired like we all were during the pandemic. I just needed a vacation. I just needed some sleep. None of those theories held up, however, when I found myself sitting on a patch of grass at dusk, the hospital to my right, the parking lot to my left. I was wearing my medical suit of armor: scrubs, a fleece jacket, and leather clogs. As I slumped forward, I tried to focus on the pattern on my compression socks, a poorly drawn ECG. Just breathe, I told myself, just get up. But I couldn’t. I was 41 years old, a sub-specialized physician, and the mother of two children. I held many roles and wore many suits of armor. I was strong. But at that moment I could not walk the remaining 10 yards to my car. I eventually made it home and I withdrew my work commitments. Over the subsequent months, instead of improving with time and rest, I felt worse. I became well known to my internist as well as many specialists. Ultimately, I was diagnosed with ME/CFS, possibly triggered by Covid-19.

Patients with Long Covid present with myriad symptoms and workup is slow. There are no reliable prognostic indicators and no reliable treatments. There are no experts yet. Although research is underway for Long Covid, we can extrapolate from what we currently know about ME/CFS, a multiorgan system disease the mechanism of which is only theorized. ME/CFS may be an immune-mediated response to infection. It commonly disrupts the autonomic nervous system and possibly mitochondrial function, which may explain the profound post-exertional malaise (PEM) that marks this disorder. As a physician, apart from staying current on the latest research studies, the best approach to caring for a patient with Long Covid is by listening to and believing them.

Listen to your patients, and believe what they tell you.

It is a simple rule, but not always followed. Patients with complex disease are often dismissed by medical professionals as attention-seeking or anxious, and at times they are treated poorly; for someone already struggling with chronic debilitating conditions, this is devastating. Even though I am a physician myself, I had a few disheartening interactions as a patient. When I have explained my symptoms and been met with replies like “that doesn’t happen,” or “there’s nothing wrong with you,” I’ve felt deflated and confused, sometimes insulted. In each case, I am certain the physician did not intend to be hurtful, yet I am also certain he or she has hurt other patients in the same manner. The message patients receive after repeated interactions like this is that doctors cannot help, that the onus of recovery lies on them alone. Given the scale of Covid-19, we cannot disregard its disabling aftermath; we would be wrong to continue dismissing other virally-mediated disorders like ME/CFS.

The physicians who have helped me most – I am grateful for each one – are not all experts in Long Covid or ME/CFS, but they do share the approach of listening and believing their patient. They admit unfamiliarity when that is the case and ask questions. I advise this approach during perioperative care, as well. Ask your patient to describe their illness. He or she may know more about their disease than you do, and likely has experience explaining it. Done with grace, admitting you don’t know something will not undermine you; in fact, most patients with complex disease appreciate a collaborative approach from their physicians. It builds trust. I suggest simple verbal cues including: “Tell me about your symptoms. Which of your diagnoses/symptoms is predominant? What has worked for you in the past? What triggers your symptoms? What worries you most today?” Set appropriate expectations, as the patient’s symptoms may flare postoperatively, regardless of anesthetic choice. “I’m glad/sorry you felt that way after your last surgery. Today your body may respond differently. No matter what, we will do our best.”

As for anesthetic care of a patient with Long Covid, certainly screen for major organ damage. Also be aware that patients use an array of medications to treat their symptoms, including midodrine, low-dose naltrexone, anticoagulants, and mast cell stabilizers. Dysautonomia may present as tachycardia or dysrhythmia; consider appropriately aggressive volume therapy, foley or straight cath. Mast Cell Activation Syndrome (MCAS) may predispose patients to allergic reactions; consider H1 and H2 blockers. Many patients have anxiety and depression, usually the result of Long Covid symptoms, not the cause; consider anxiolysis in postop care. Long Covid and ME/CFS patients can be hypersensitive to external stimuli. A quiet PACU space can be difficult to find, but eye and ear covers, like a towel and ear plugs, are accessible and effective. Cognitive impairment may have implications for the preoperative discussion of risks and benefits, and consent. Given hypersensitivity to meds, titrate anesthetics and narcotics to effect. Given PEM, anticipate prolonged recovery.

While being ill with Long Covid has been awful, it has offered a new perspective on my work as a physician. I previously believed empathy is important, but more important was knowing the answer. The past two years, however, no one has had the answer. Early in the pandemic, as medical professionals we navigated uncertainty by collaborating and sharing. We opened ourselves to new information, tried and pivoted. While it has been exhausting, we continue navigating uncertainty because the ramifications of Covid-19 do not end with acute infection. This is a mass disabling event, and recovery rates are as yet unclear. Until the science is elucidated, I encourage my peers to engage patients with complex conditions like Long Covid and ME/CFS with humility, transparency, and kindness. Collaborate with your patients and share what you learn with your peers. I hope I do not meet you as a patient in the future. However, you will almost certainly meet someone like me; be the doctor that they need.

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