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September 3, 2020

What it's like to be a Covid-19 'long-hauler'—and a doctor

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Coleen Kivlahan, a physician and head of primary care at the University of California-San Francisco (UCSF), has had symptoms of Covid-19 since she tested positive for the novel coronavirus in March—a difficult experience with one upside: Kivlahan says being a Covid-19 "long-hauler," and a patient at UCSF, helps her provide better care to patients with the virus, Sumathi Reddy reports for the Wall Street Journal.

Covid-19 guidance from clinicians at the forefront

A Covid-19 long-hauler

According to Reddy, Kivlahan is one of the roughly 15% of "long-haul" Covid-19 patients, or patients who still experience symptoms of Covid-19 months after they initially were diagnosed with the new coronavirus, which causes the disease. These symptoms often include lingering chest pain, fatigue, and neurological issues.

Kivlahan fell ill, and was diagnosed with, Covid-19 in March. Her first coronavirus test came back negative, but when she later went to the ED with a cough, fever, shortness of breath, and night sweats, she received another test that came back positive. Tests also revealed that Kivlahan had developed "diffuse bronchitis," as well as another uncommon respiratory virus.

Kivlahan said that, after her visit to the ED, her cough got worse and she experienced chest and stomach pains from the persistent coughing. Kivlahan said, at times, she was so weak that she had to sit down in the shower.

"I was short of breath just sitting there," Kivlahan told Reddy. "I had to lay down with my head down off the bed just to breathe."

Kivlahan went to the ED again, and her chest pain was so bad that "she got an EKG to rule out a heart attack," Reddy reports. But by March 21, Kivlahan began feeling better.

The improvement was short-lived, however. A few days later, Kivlahan's cough returned and she again began experiencing chills, shortness of breath, and chest pain. She went to the respiratory screening clinic at UCSF the next day, and she tested positive for the coronavirus yet again. A couple of days later, Kivlahan said she couldn't smell mint or taste hot chocolate, Reddy reports.

Kivlahan was concerned her symptoms might send her to the hospital—or even lead to her death. She made an advance directive for end-of-life care and "packed a bag several times to go to the hospital," Kivlahan told Reddy, though she ultimately would "decid[e]" that she could "make it one more night at home," Kivlahan said.

Kivlahan still experienced symptoms of Covid-19 through April, and there were some evenings when she "could not take a full breath," she told Reddy. "[T]he pressure in my chest was so intense I had to lie very still in bed to avoid breathing deeply."

Kivlahan tested positive for the coronavirus again in April. "It was a big emotional backslide," she said. "It was really the first time I felt like 'This is a virus we don't understand.'"

Kivlahan said she ultimately tested positive for the coronavirus a total of nine times from March until June 11, when she received her first negative coronavirus test since she had initially sought ED care. At that point, her symptoms were also subsiding. "I celebrated by taking a walk outside with a mask on," she said.

Now, Kivlahan's heart and lung function are almost normal and her energy level is about "90%" of what it normally is, she told Reddy. However, Kivlahan said she still experiences some lingering symptoms of Covid-19. According to Reddy, Kivlahan said her senses of smell and taste haven't yet returned, and she still has a mild cough. Kivlahan also said that, every now and then, she can smell and taste fire that isn't there—a disorder known as phantosmia, which can be triggered by upper respiratory infections. "I have to look outside to see if Northern California is on fire," she said. "It is very real."

A different perspective

Despite her symptoms, Kivlahan has been seeing patients virtually since March, and she now plans to resume seeing patients in-person at UCSF this month.

Kivlahan said she treats up to 20 Covid-19 patients per day, and her own experience with the illness has helped her understand her patients' experiences on a more personal level. "Because this virus has so many unique ways of impacting the human body, my personal illness has allowed me to reassure and direct care in a special way," Kivlahan told Reddy.

For instance, Kivlahan better understands the psychological toll Covid-19 can have on patients—especially on long-haul patients who can experience symptoms of the illness for months. Kivlahan told Reddy that the three-months period during which she tested positive for the coronavirus were psychologically taxing. "I spent months not being able to hug my kids," she said. "All that emotion and anxiety absolutely affects our organ systems and increases the stress hormone cortisol. Those things are hard to tease out from the virus effect itself."

Kivlahan said her patients often express concern that she won't understand the physical and psychological hardship of Covid-19 and that doctors might not know how to empathize with patients who have been sick for months. But to reassure them, "[w]hen it's appropriate clinically, I tell them my story," Kivlahan said. "It causes tremendous relief. People begin to believe there's hope."

Kivlahan also is a patient, herself, at the post-Covid-19 multidisciplinary clinic at UCSF, and she's currently participating in a Covid-19 study being conducted at the hospital. Kivlahan said she hopes to help other clinicians better understand the impact of Covid-19 on long-haul patients.

"These are patients who weren't in the ICU, weren't on a vent, didn't die. But they have ongoing symptoms that are just scary and unknown," Kivlahan said. "We can learn a great deal about the virus by understanding those lasting symptoms" (Reddy, Wall Street Journal, 8/10).

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