March 6, 2023
Living with long COVID
From avid snowboarder to chronically ill patient. How Kaiser Permanente is tackling one member’s long-COVID-19 diagnosis.
Craig Swencionis has long COVID but is benefitting from integrated care at Kaiser Permanente.
Craig Swencionis, 35, was a very active guy. The kind who did all-day bike rides, off-road excursions, snowboarding, and longboarding. As a health-conscious person, Swencionis took precautions when the COVID-19 pandemic hit. However, he contracted the disease at the start of the pandemic when a vaccine was unavailable.
Although he was not hospitalized, his case was severe with symptoms including shortness of breath, fatigue, and brain fog. What became different about Swencionis’ case is that his ailments never went away. They got worse.
“I went from snowboarding every weekend and being extremely active to being unable to walk a block without stopping for a rest,” Swencionis said.
Swencionis was eventually diagnosed with long COVID, which is when a person has a wide range of new, returning, or ongoing health problems after being infected with the virus that causes COVID-19.
Marcos Siqueiros, MD, internist at Kaiser Permanente Santa Clara, said long COVID can have over 200 symptoms and that anyone who has had COVID-19 is susceptible.
“Although people who had more severe COVID-19 are at higher risk for long COVID, it can occur with people who experienced mild COVID-19 as well,” Dr. Siqueiros said.
Those who are at higher risk for severe COVID-19 — people with diabetes, chronic illness, obesity, or more than one disease — are not necessarily at higher risk for long COVID, according to Dr. Siqueiros.
What research has shown, explained Dr. Siqueiros, is that long COVID is more prevalent in the Latino and African American communities, as well as in transgender and bisexual populations. It’s also been shown to affect younger females at higher rates.
Quality, coordinated care
As Swencionis’ symptoms progressed, he was forced to go on disability and move back in with his parents in San Jose, California. “My symptoms kept getting worse and ranged every day,” he said.
He began treatment with his longtime physician Benilda Seballos, MD, at Kaiser Permanente Santa Clara Homestead Medical Center. Dr. Seballos’ path forward was to treat Swencionis’ symptoms individually. Within 6 months, he saw a Kaiser Permanente pulmonologist, a cardiologist, and an audiologist and vestibular therapist to address his severe vertigo and dizziness.
Along with long COVID, Swencionis was eventually diagnosed with benign paroxysmal positional vertigo, a balance problem; persistent postural-perceptual dizziness; and postural orthostatic tachycardia syndrome, which is a fast heart rate that starts after you stand up.
He is also suffering from conditions that others with long COVID have also been diagnosed with: mast cell activation syndrome and myalgic encephalomyelitis or chronic fatigue syndrome.
Getting these diagnoses was made more seamless with the integrated care model of Kaiser Permanente. “Besides the quality of Craig’s care, I was grateful for the options of care we could offer him. This type of illness can’t be solved by one primary care physician,” said Dr. Seballos.
Swencionis was grateful, too.
“Throughout my journey, my doctors would respond within 24 hours. I never felt abandoned,” he said. “I was relieved to get a diagnosis and started to improve after seeing my vestibular therapist.”
Long COVID community
Last year, Dr. Siqueiros formed a virtual long COVID clinic. The clinic involves 10 clinicians from Kaiser Permanente in Northern California and has seen more than 1,000 patients including Swencionis.
Although efforts are underway to understand how to treat long COVID, there are no current therapeutics, but there are ways to help manage its symptoms.
“What we do know is that long COVID can cause inflammation, which we treat with an anti-inflammatory diet, exercise, and medication,” said Dr. Siqueiros.
Mental health support is also a component of contending with this ongoing illness. The clinic offers a mental health support group in which patients share their experiences and learn about new information and treatments.
“Since my life has hit the pause button, it’s been vital to meet people who are going through something similar,” said Swencionis, who is still living with severe fatigue, brain fog, mobility challenges, and chronic illness.
The medical community is just beginning to understand long COVID and how to treat it, said Dr. Siqueiros. And Kaiser Permanente is dedicating resources and time to do just that.
“We will continue to approach this condition with humility, curiosity, and a patient-centered approach to care.”
