Dr. Coleen Kivlahan knew what the result of her COVID-19 test would be the moment she stepped outside her San Francisco home and could smell a forest fire, a symptom that can accompany loss of smell.
Then that persistent cough kicked in. Those are two of the lasting symptoms. So it was no surprise that she tested positive on Wednesday. The surprise was that it had been at least 85 days that she has been infected with the coronavirus and 62 days since she first tested positive. That she is both alive and still has symptoms may be some kind of record for longevity for suffering the disease without hospitalization.
“I belong to the very small club of persistent positives,” said Kivlahan, who is executive medical director for all primary care at UC San Francisco. She has seen some 60 UCSF colleagues come down with the coronavirus, almost all going through a miserable few weeks and then test negative and be allowed to return to work.
For Kivlahan, the worst of the symptoms are over. She narrowly avoided hospitalization and the dreaded intubation. She is able to get out of bed and even enjoy the luxury of walking up a flight of stairs. But she has lived essentially in isolation with her husband at their home in Crocker-Amazon since March 6, 10 days before the citywide shelter-in-place order, and has no idea when it will end.
“We don’t know why I am persistently positive and when I am going to turn negative,” she said in a phone interview following her test on Wednesday. “I’m anxious to join the world again.”
Dr. Peter Chin-Hong, an infectious disease specialist at UCSF, does not know Kivlahan and is unfamiliar with her case. But this is the first time he has heard of a patient still testing positive for COVID-19 nearly three months after infection. Within eight days of the onset of symptoms, the virus is normally dead.
“I would be shocked if that is live virus,” he said of Kivlahan’s positive test this week. “My gut sense is that it is persistent fragments of the virus. This patient may be the exception, but no one really knows.”
Chin-Hong said there are not enough data yet on COVID-19 survivors, but with other viruses there have been survivors who develop chronic symptoms like the ones Kivlahan cannot shake.
“This is a club,” she says, “that I don’t want to be in.”
Kivlahan, who is 66 and in otherwise excellent health, is not sure when she joined the club. It was either Feb. 25 or March 3, the last two days she took time away from her administrative and faculty duties to work in the urgent care clinic at UCSF Parnassus.
On both days she wore a face mask and so did her patients, but there was no COVID-19 test available to UCSF patients at that time, and on either day she was examining patients with the standard COVID-19 symptoms of fever and a cough.
“I spent a lot more than 10 minutes closer than 6 feet with each patient,” she said, “so I was a direct hit.”
As head of the clinical services side of primary care, Kivlahan oversees hundreds of doctors and thousands of patients, of all ages. She was among 100 UCSF leaders to attend the first strategic meeting on dealing with the coming pandemic, on March 6, three days after she had seen patients in the clinic. The meeting took most of a day, and late in the afternoon as she was hearing about the symptoms to recognize in patients, she started feeling them — chills and a fever. She got home just in time for her first cough.
“It sounded just like the cough I had been hearing in the clinic,” she said. “I was having trouble breathing. I knew something was very bad.”
She rested through the weekend and on Monday morning she went to UCSF for a nasal swab test and it came back negative, for both influenza and COVID-19. She was sent home to rest and began work on a meticulous medical diary that may serve as a case study some day.
“I’ve had malaria three times for my work overseas,” she said, “and I knew there was something severe about this virus.”
The journal details her temperature, pulse rate and oxygen level any time she felt symptoms. It also details how, on March 11, her husband, Dave, developed the same symptoms. He also tested negative for COVID-19 but positive for human metapneumovirus, an upper respiratory infection known as HMPV.
“Suddenly, we were both quite ill and had to figure out how to get food and medicine, and isolate from each other while being each other’s only caregiver,” she wrote.
On March 15, Kivlahan tested negative for COVID-19 for the third time, but positive for HMPV and bronchitis.
She was given a 12-day course of steroids, and her symptoms waned. Her husband recovered, and she felt well enough to resume working while in bed as she’d done all along. But she was hit with a second wave on March 25. She lost her voice, and by nightfall the cough had taken over. She had alternating chills and night sweats so bad that she changed the sheets twice.
The next morning, March 26, she made one of her now too-frequent visits to the UCSF Respiratory Care Clinic. It was one of life’s small strange victories that she finally tested positive for COVID-19.
“I felt relief actually,” she wrote. “I knew it had been hiding away, under the banner of HMPV, and waiting to take hold of me.”
Within a few hours of the diagnosis, she lost her sense of smell and taste for food, which have been revealed in studies to be telltale symptoms. Neither one has come back.
“I have a fake smell of smoke from forest fires all around me,” she said. It always got worse around 6 p.m. with fever, burning eyes, headaches, nausea. By nighttime she’d be “so short of breath I couldn’t get out of bed to go to the bathroom, and usually I walk 5 miles a day.”
But by morning she would feel that she was on the mend, until it started up again. Through it all, she was determined not to go to the hospital and did not want intubation.
“For elderly people who are intubated, the mortality rate is high,” she said. “I was not confident that that was how I wanted to die.”
She had the advantage of being able to constantly test herself with a digital thermometer, plus a device that measures the oxygen in the blood and a pulse cuff to measure her blood pressure.
“They let me know where I was on the continuum,” she said. “I prayed that I would be conscious and cognitively clear enough to make a good decision to stay at home until I could not stay at home anymore.”
That came on March 31. Her temperature spiked to 102.1, and the dry cough was so bad she packed up for the hospital. Dave was ready to drive her to UCSF.
“I said, ‘Give me one more hour,’” she recalled, “and it slowly stabilized.”
One of the mysteries is why Dave caught HMPV but it never advanced to COVID-19. He and Kivlahan have joined a UCSF study on couples, one of whom tests positive and the other doesn’t. Chin-Hong said she is a model candidate for a second UCSF study being mounted called LIINC (Long-term Impact of Infection with Novel Coronavirus) being set up at San Francisco General Hospital.
“How nice,” she says, “another club to belong to.”
One of the first studies on survivors was published by the JAMA Network on May 22. Researchers at Hunan Normal University in China tracked 60 adult patients who had recovered from COVID-19 and been released from the hospital. After 14 days of home quarantine, they were tested again. Ten of the 60 still tested positive for up to 24 days after discharge. An earlier study suggested that patients could test positive up to 30 days after recovery.
But all of those patients were symptom-free. Kivlahan still has the lingering dry cough, tightness in her chest and an elevated heart rate. She still has not regained her sense of smell or taste. Saturday will make at least 88 days since she was infected.
“What makes me unusual, and I share this with a small group of people throughout the world, is that my COVID nasal test remains positive this far out from my illness onset,” she said. “Thus we are in limbo — trusting that we are not infectious and that maybe we have antibodies that protect us if exposed ... or maybe not.”
Sam Whiting is a San Francisco Chronicle staff writer. Email: swhiting@sfchronicle.com. Twitter: @samwhitingsf
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