November 15, 2021

Prolonged care for COVID-19: A place for healing in Oregon

The Late Sequelae Clinic is designed to help patients navigate the complex symptoms associated with post-acute sequelae of COVID-19, or long COVID-19.

Kaiser Permanente has launched a new clinic in Portland, Oregon, to support members experiencing prolonged symptoms of COVID-19.

While most people recover from COVID-19 within a few weeks, about 10% to 30% will experience prolonged symptoms, according to the Centers for Disease Control and Prevention. For these people, symptoms can last for months or longer. This condition — post-acute sequelae of COVID-19 — is known as long COVID-19. Symptoms vary from person to person, range in severity, and can come and go unexpectedly.

Finding the right treatment is challenging

After being seriously ill with COVID-19 for 2 weeks in October 2020, Kaiser Permanente member Katia Perez thought she was recovering. Then things took a turn for the worse. She suddenly came down with a severe fever, night sweats, numbness in her legs, an irregular heartbeat, and dizziness so extreme, she says, “I felt like the world was crashing down around me.”

Another Kaiser Permanente member, 38-year-old Chelsea Laib, has been ill since she contracted COVID-19 in March 2020. “My first symptoms were all over the board,” she said, noting she’s experienced high fevers, a cough, “COVID toes,” rashes, fatigue, gastrointestinal issues, disrupted equilibrium, and joint pain. Many of her symptoms persist today, including “brain fog” and trouble with memory and word association. “There are whole days that I don’t remember at all.”

Since symptoms vary so widely and can change over time, finding the right treatment is challenging. As a result, many long-haul patients have felt alone in navigating the medical system. This is one of the problems the Late Sequelae Clinic aims to address.

Extensive research, learning, and discovery

“With this illness, there is no textbook, and people’s experiences and complications are different,” said Ellen Singer, MD, a physician with Kaiser Permanente in Portland, Oregon, who helped launch the clinic. “We’re writing the textbook as we go.”

The clinic’s  medical team reviewed hundreds of COVID-19 cases to identify patterns in symptoms. They worked with specialists from every department to create a map of services people might need, including pulmonology, cardiology, endocrinology, sleep medicine, occupational therapy, speech therapy, physical therapy, and mental health.

They also met with long-haul COVID-19 patients to better understand their early care experiences. Dr. Singer says that really listening to and respecting patients who are suffering lingering symptoms is important to their recovery. “We didn’t know what we didn’t know early in the pandemic,” she said. “Patients felt unheard or even dismissed.”

The new clinic uses a model that is driven by primary care and supported by specialists. Based on early learning, the clinical team developed a panel of orders to help providers evaluate symptoms. If patients’ symptoms persist after initial treatment, the provider can refer them to the clinic for specialized care.

A clearer understanding

“We now clearly understand that each patient experiences the ongoing effects of COVID-19 differently,” said Dr. Singer. “There is not one treatment course, but with evaluation and coordinated specialized support, we can provide a personal roadmap to recovery.”

Kaiser Permanente members Perez and Laib continue their journeys back to health. “COVID taught me that you become a survivor after this virus,” said Perez. “I was always strong, but now I feel stronger, and I always see hope at the end of the tunnel.”

For people facing COVID-19 today, Laib advises: “Be patient with yourself; be kind to yourself; take every little win you can get; and keep building from there.”