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One of the worst aspects of COVID-19 is its ability to leave patients who have recovered from the respiratory disease with an array of debilitating symptoms that can linger for months.

Two of Hawaii’s major health care providers, The Queen’s Health Systems and Hawaii Pacific Health, have launched new programs to treat these patients known as long-haulers — an estimated 10% of patients who never seem to fully recuperate.

Even though long-haulers test negative for the coronavirus, they are overcome by symptoms such as fatigue, coughing fits, loss of hair, shortness of breath, heart palpitations, brain fog, insomnia and anxiety.

They can lose their sense of smell and taste, and are often pressured by others to get better when they can’t.

The multiple illnesses they suffer now fall under the name “Long COVID” or more formally under the new scientific name Post-Acute Sequelae of Sars-CoV-2.

Some might be as high as 30%.

“We are learning about it as we go along. As new information emerges we want to be on top of it to get new therapies to the patients,” says Dr. Bennett Loui, the head of Hawaii Pacific Health’s Long COVID Care Program, which is run at Straub Medical Center in conjunction with Hawaii Health Partners.

It is a virtual program treating patients who are referred by their primary providers. The providers then interview the patients by phone or online video consultations and refer them to specialists to treat their lingering conditions.

The one-stop consultation service could save someone who is already sick and suffering from having to go doctor-to-doctor to try to find out what is wrong.

Loui says a promising piece of news is that  and they feel better.

“The studies are new and have not yet been published, but they offer hope,” he says.
Programs to help long-haulers have been initiated by hospitals all over the country. The to try to find out what to do to assist.

Long-haul symptoms can change the course of a patient’s life.

Sarah Bolles, 35, was hospitalized in March for six weeks at Kaiser Permanente Moanalua Medical Center with a life-threatening case of COVID-19. She recovered but still, a year later, finds it difficult to breathe, making it hard for her to walk very far. She also suffers from anxiety and chest pains that she says feel like angina.

“I try to stay positive. I nearly died from COVID. I am thankful for the opportunity I got to live, but this has been frustrating,” she said in a phone interview.

Before her illness, Bolles had a demanding full-time job as customer services manager at the Navy Exchange Pearl Harbor. Now she works as a service experience representative for only four hours a week at Nordstrom Rack in Ward Village.

“I don’t think I will ever be able to go back to work full-time. There is no way I can be on my feet all day,” she says.

It is not just people who have been hospitalized for the disease who end up with prolonged symptoms.

Peggy Torda-Saballa was diagnosed with COVID-19 in April after her son, Waikiki bartender Lee-Jacob “Coby” Torda, came down with an almost fatal case of the disease.

Torda-Saballa, 71, a retired nurse, had an extremely mild case and was on her feet the entire time she was infected with the virus,  especially in the evenings. It sometimes wakes her up.

“I feel like the coronavirus is still lingering in my body,” she said Sunday in a phone interview.

She says her son Coby still has to use a portable oxygen tank when he is exercising, walking his dog or gardening.

“He has a hacking cough that gets me up every morning like an alarm clock,” she says.

Dr. Dominic Chow runs The Queen’s Health Systems Post-COVID Care Clinic, which has helped 37 patients since it launched Dec. 18.

He says patients with Long COVID often feel isolated.

“The people are often quite debilitated and also under stress from friends and family members who may not understand what they are going through,” he said.

Help for COVID long-haulers is available two days a week in the clinic on the ground floor of the Queen Emma Tower on Punchbowl Street.

Patients are guided to medical specialists to treat their physical and mental problems and  are offered employment support because many have lost jobs or been forced by fatigue and sickness to work greatly reduced hours.

Since seeing its first COVID-19 patient on March 15, 2020, The Queen’s Health Systems has admitted 1,293 patients at its four different hospitals. It has cared for the most COVID-19 hospitalized patients in the state.

Chow says about 10% of Queen’s patients, even those who were not hospitalized, are now suffering prolonged new symptoms. It can be “a storm of side effects,” he says.

Nobody is certain what causes the lingering disabilities.

Akiko Iwasake, — that the initial COVID-19 infection has kicked off a long-term autoimmune response with the body attacking its own cells, that remnants of the coronavirus are causing continued inflammation or that the virus itself has never gone away and is hiding somewhere in the body to reemerge from time to time.

A with 157,000 followers is filled with reports from patients all over the country with a myriad of lingering symptoms.

Honolulu resident Lani Patterson said in a phone interview Sunday that she is creating a similar local Facebook page here to offer solace to Hawaii’s long-haul patients and their families.

She says her entire family is worried about her mother who was released from Pali Momi Medical Center on Dec. 3 after recovering from a severe COVID-19 infection but has began experiencing hallucinations, brain fog and a remoteness since she returned home.

“It is very painful to watch someone you love be there, yet not be present. It is an emptiness that is difficult to describe,” says Patterson.

So much about the coronavirus remains a mystery.

“We are just beginning to scratch the surface of COVID-19. After the disease itself has died down, we are going to be picking up the pieces of Long COVID for many years. Some people who have had COVID may never be the same again,” Loui says.