EDITOR’S NOTE: FIRST OF A TWO-PART SERIES
Daniel Harrang used to run, bike and swim regularly before going to work at Kahului Airport for the U.S. Department of Agriculture.
The Wailuku resident was in great shape and in good health, and never thought he would one day be so sick that taking a shower would sap his energy for the day.
Harrang says that after contracting COVID-19 in March 2020, he continues to suffer from chronic fatigue, shortness of breath, insomnia and nerve pain, among numerous other health issues.
“By far the worst of all is disabling fatigue that makes simple tasks like brushing my teeth or talking or even texting at length utterly exhausting,” he said. “I used to have no trouble driving all day long, and now I can’t easily or safely drive more than a few miles, so I seldom leave the house.”
Harrang, 46, is suffering from symptoms of “long COVID,” formally known as post-acute sequelae of COVID-19 (PASC) but also referred to as post-COVID syndrome.
Since getting infected, he has not been able to return to work as a plant health specialist for nearly two years or resume activities he once took for granted, like going for a walk on the beach. He is now mostly housebound, limited to a bed or chair.
The most difficult part is that doctors do not necessarily know how to treat him — he’s been through at least four physicians — as he navigates a relatively new illness few have any formal training for.
Similarly, Bonnie Chan, who worked decades as a music therapist at the Hawaii State Hospital in Kaneohe, has not been able to return to a job she enjoyed after coming down with COVID-19 over the summer.
After experiencing a fever, testing positive and isolating for 10 days, she thought it would all be over, but it’s not — six months and counting.
Chan, 66, had underlying asthma and continues to experience difficulty breathing, headaches, dizziness, fatigue and “brain fog.” Doctors say her symptoms are similar to postural orthostatic tachycardia syndrome, or POTS.
She tried a few times to return to work but could not overcome her symptoms.
Both Chan and Harrang have co-workers who donated vacation time or sick leave to help them financially, along with other support from friends and family, but it’s been a lonely and depressing experience that few understand.
What they want people to know is that long-haul COVID is real. They want to be taken seriously, especially by health professionals, and they want help — whether it be more funding, treatment options or social support.
Most of all, they want to get back to life as they knew it before contracting the coronavirus.
“You wonder if you’ll ever get back to your other life, and that’s what I’m wondering now,” Chan said.
Variable symptoms
An estimated 10% to 30% of individuals who contract COVID-19 will develop long COVID, according to Dr. Dominic Chow, a physician with The Queen’s Medical Center Post COVID Recovery and Care Clinic.
Queen’s launched the clinic in December 2020, and to date it has seen more than 300 patients, but its main mission is to serve as a resource for primary care physicians treating those with long COVID.
“The leadership at Queen’s Medical Center saw a second pandemic,” Chow said. “Obviously, the infection is the first, the second being the disabling condition or syndrome and serious health effects that will really affect all of society.”
The U.S. Centers of Disease Control and Prevention uses “post-COVID conditions” as an umbrella term for a range of new, recurring or ongoing symptoms present four or more weeks after infection with the coronavirus. Long COVID can be considered a disability under the Americans With Disabilities Act, according to the U.S. Department of Health and Human Services.
The condition can affect people of all ages as well as those who had only mild or asymptomatic infections.
Chow said he has seen patients with mild symptoms from an infection get progressively worse a year later. He’s also seen patients with few initial symptoms who developed cough and fatigue two to three months later.
The most common symptoms are shortness of breath, chest pain, cough, fatigue and brain fog. But there can also be joint pain, insomnia and tachycardia, or a high heart rate.
But the symptoms can be highly variable, according to Chow, and are sometimes vague and subtle.
“No two patients with COVID are alike, which makes treatment very difficult,” he said.
Many patients feel abandoned when others do not understand what they are going through, and their struggles lead to anxiety and depression.
Those who suffer from cognitive dysfunctions such as brain fog face another set of challenges. Although the brain appears to be normal, he said blood tests have found the cognitive function for some long-COVID sufferers to be structurally similar to “chemo brain,” a common term used to describe thinking and memory problems that can occur during and after cancer treatment.
The recent omicron variant surge, which resulted in a staggering number of new infections in Hawaii — more than 100,000 during January alone — is also concerning, Chow said, meaning potentially thousands more patients could develop long COVID.
An invisible illness
Many primary care physicians are still grappling with the diagnosis and treatment of patients suffering from long COVID, a relatively novel condition.
Medical research on the condition and its causes is underway but has only skimmed the surface so far.
The Queen’s Medical Center and the University of Hawaii’s John A. Burns School of Medicine are collaborating on a study to determine why some people in Hawaii develop chronic symptoms, part of a national initiative funded by Researching COVID to Enhance Recovery, or RECOVER.
Chan, who has been to the Queen’s clinic, is taking it one day at a time, one step at a time. She tries to go for short, 20-minute walks but has to plan out her day carefully due to fatigue.
Even though vaccinated with two doses, Chan thinks she caught COVID-19 in July while dining at a restaurant with a friend visiting from out of town.
Federal guidance at the time indicated that vaccinated individuals did not have to wear a mask, so she unmasked at the restaurant and came down with a fever the next evening.
Her message to others during this pandemic is, “It’s really so good to be careful.”
Chan’s battle has been a roller-coaster ride, with improvement on some days, then back to square one on others, and not knowing when it will be over.
“With any illness or disease, it’s not until you go through it that you really understand what it’s like,” she said. “I don’t think people do understand, but I also try to be positive.”
Some misconceptions about long COVID is that it is rare or affects only those who became severely ill. Because it might not be very visible, it is also perceived as being psychosomatic, or “all in the head.”
Harrang thinks he caught the coronavirus in early March 2020, before much was known about the pandemic, after walking into a bathroom at Kahului Airport, where a man was coughing uncontrollably. Three days later his lungs felt tight, followed by flu-like symptoms.
He says he was unable to get tested in a timely manner, even though he went to see a doctor. Face masks were not required then, nor were vaccines available. He has since been vaccinated and boosted against COVID- 19.
Part of the hardship for Harrang is that he has no laboratory proof or official medical diagnosis, leaving him in limbo when it comes to numerous attempts to apply for workers’ compensation and disability.
He said his post-COVID symptoms mirror those of severe myalgic encephalomyelitis but that several doctors had initially attributed them to anxiety. Doctors have prescribed him medication for depression and nerve pain, but nothing has gotten to the root of the dysfunction, he said.
Long COVID is kind of an invisible illness, he said, a reminder that “we all need to be kinder than necessary because we can’t see battles people are fighting.”
Still, Harrang hasn’t given up hope and would go back to work in a heartbeat if he was able.
“It’s the love of family and friends that keeps me going,” he said, “and hope of eventual recovery to get back to service and to be able to travel and get back to hobbies.”
———
Coming Tuesday: Long-COVID patients share stories of their paths toward recovery.
What is long COVID?
>> Common symptoms include fatigue, shortness of breath, “brain fog.”
>> Can affect people of all ages, including children.
>> Can develop even if someone with COVID-19 was asymptomatic or had mild illness. Symptoms can be ongoing following an infection or develop anew.
>> Other symptoms include cough, chest pain, joint or muscle pain, fever, headache, mood changes, sleep problems. Some also experience post-exertional malaise, the worsening of symptoms after minor physical or mental exertion.
>> Recognized as a disability under the Americans With Disabilities Act.
Source: CDC
