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Dr. Monica Verduzco-Gutierrez experienced heightened fatigue and discomfort upon returning home last year, following a brief run weeks after recovering from a mild case of COVID-19. She developed hives and was struck by a severe migraine.
Her daily lifestyle underwent significant changes in the following months, with unpredictable fluctuations in her blood pressure and heart rate. Taking walks became challenging.
For nearly two years, she had been providing medical care to hundreds of patients suffering from long-term symptoms of COVID, commonly known as “long COVID.” Her practice was located in San Antonio and had a waitlist that stretched for months. Despite her expertise and experience, she constantly encountered a frustrating lack of receptiveness from fellow doctors who seemed unwilling to acknowledge her professional needs.
“Although it took me nearly a year to achieve what, in my opinion, is an improvement,” she pondered, “I still wonder if I have truly reached my full potential.”
Despite certain scientific breakthroughs in care, numerous uncertainties remain regarding the various symptoms, treatments, and consequences of long COVID.
At the Department of Rehabilitation Medicine at the University of Texas Health Science Center at San Antonio, Verduzco-Gutierrez has worked with other medical specialists to treat a still-growing population of patients weekly, but she said awareness of the disease seems to have dropped for the 15% of Texans who have experienced long COVID at some point, according to a recent Centers for Disease Control and Prevention survey.
She expressed her sadness over the fact that everything was accomplished at an incredible speed during Operation Warp Speed – the vaccines were developed swiftly, numerous treatments were made available. However, the situation now seems quite different. She wonders why there isn’t a similar urgency, a “warp speed,” in addressing the needs of individuals suffering from long COVID. These individuals endure immense suffering, face disabilities, and struggle to resume their work or normal lives.
Since the start of the pandemic, numerous clinics have emerged throughout the state to tackle the issue of long COVID. This term encompasses a variety of symptoms such as organ failure caused by the virus, chronic fatigue syndrome, chronic heart conditions, brain fog, and the deterioration of preexisting ailments. To address these diverse symptoms and identify their precise origins, many of these clinics employed a multidisciplinary team of doctors.
However, after a year, several of these clinics closed down, while others shifted their focus to providing inpatient care exclusively for individuals recovering from COVID in the ICU. Additionally, some of these clinics transformed into rehabilitation centers that were not specifically tailored to long COVID care. Meanwhile, the wait times at the remaining clinics fluctuated alongside the surges in virus cases. According to Verduzco-Gutierrez, many Texans are unaware of the need to seek out specialized care for long COVID, and even for those who are aware, there is still a prevailing stigma surrounding the legitimacy of long COVID.
Verduzco-Gutierrez expressed, “A different doctor advised me against diagnosing them with long COVID since they didn’t want to be categorized as that type of patient. It’s disheartening that some individuals view it in a negative light due to our limited understanding of the condition.”
The rate of people infected with COVID who end up with long COVID has generally decreased since the pandemic began, according to KFF, a health policy research organization. But reinfections can still cause the condition, and up-to-date vaccinations may help prevent its development, according to the CDC.
What long COVID looks like
In 2020, Amy Goldenburg experienced a resurgence of health issues shortly after recovering from COVID-19. Stomach pain and intestinal troubles became a constant companion, followed by the onset of chronic fatigue. Amy found herself sleeping for extended periods of 16 to 18 hours each day, only to wake up to a perplexing array of unpredictable symptoms, like drawing results from a never-ending “symptom lottery.”
Goldenburg, who is 50 years old, had been experiencing a rapid increase in her heart rate every time she got up to use the bathroom for months. Additionally, she found herself limited to consuming only Raisin Bran cereal. During a visit to her doctor’s office, she was informed that her symptoms were likely a result of anxiety, depression, or menopause.
She expressed her disbelief, stating, “If this truly represented menopause, middle-aged women would be nowhere in sight. We would be confined to our homes indefinitely.”
It wasn’t until later that year that a different physician identified her initial COVID-19 infection, and she found others on social media experiencing similar, serious long-term symptoms. She joined their Facebook group — ATX Covid Long Haulers — where a small group ballooned over time to create a safe space and support system, she said.
During their conversation, they covered various symptoms and exchanged stories about receiving admonishments from doctors, as well as from their families and friends, regarding their health concerns. Additionally, they shared valuable information about doctors who displayed greater empathy towards their experiences and provided helpful resources for one another.
“It serves as a lifeline for many of us,” she expressed. “We often discuss the possibility of getting together someday, when we are all feeling better. However, none of us have reached that point of wellness just yet.”
According to Dr. Luis Ostrosky, who holds positions as the chief of infectious diseases and epidemiology at UTHealth Houston and Memorial Hermann, as well as a staff physician at the COVID-19 Center of Excellence, there are three distinct patterns of long COVID. These include individuals who experienced severe episodes resulting in organ damage, such as lungs and kidneys, requiring rehabilitation. Additionally, there are those who had pre-existing conditions that became more pronounced and aggravated due to COVID-19. Lastly, there are individuals who are considered “true” long COVID patients.
According to him, these individuals previously had minimal or no health problems. However, their bodies now face challenges in completely eradicating the virus and are experiencing ongoing damage. Alternatively, some individuals’ immune systems become hyperactive after being infected by the virus.
Ostrosky, whose clinic has a waiting period of two to three months, stressed the continued prevalence of long COVID. While some believe that as the virus becomes less severe, instances of long COVID decrease, our clinic remains just as busy as before. For certain individuals, this condition is incredibly debilitating and has a profound impact on their lives.
Roger Weill, a patient of Ostrosky, journeyed all the way from Mississippi to seek medical attention. He had tested positive for COVID and had been suffering from severe symptoms for several months. Despite the efforts of his local doctors, they reached a point where further progress seemed impossible. Weill’s recovery was additionally complicated by his previous encounter with chemotherapy while battling lymphoma.
Weill, 65, expressed, “The situation continued to deteriorate, and it worsened progressively. I even confided in my sister prior to our journey to Houston that I had doubts about returning.”
Weill’s body successfully fought the infection after months of undergoing specialized testing and treatment, thanks to the convalescent plasma infusion he received. This infusion led to his first negative COVID test in nearly a year.
After that, he has come back home and successfully prepared his own breakfast as well as mastered riding a bike.
Weill expressed that the clinic possessed greater freedom to treat him differently, drawing from their extensive experience. He described it as a valuable abundance of knowledge and expertise.
The UTHealth Houston Covid Center is part of the National Institutes of Health’s Recover initiative, which allows Ostrosky to conduct more research trials on the best treatments for different kinds of long COVID, Otrosky said.
The future of long COVID treatment
Gutierrez-Verduzco works at the Department of Rehabilitation Medicine at UT Health San Antonio, which received a $1 million federal grant from the Biden Administration in September. This grant aims to enhance patient care capabilities, educate a larger audience, and provide training for physicians in long COVID care.
She stated that while it is something, it is still insufficient to meet the needs of patients.
She expressed her satisfaction with the current progress, stating that it is moving in the right direction and she is glad to see it. However, she emphasized the importance of expediting research trials. If this is a stride towards achieving that goal, she would greatly appreciate it.
One example of lagging research remains around the understanding of pediatric long COVID. Not much is known about the condition in children, but it is considered uncommon, according to the National Institutes of Health.
Megan Carmilani, the founder of nonprofit Long Covid Families, expressed the concerns of the pediatric community, stating, “We’re experiencing complete panic because the situation with children is distinct.” She further explained that children’s symptoms require adult observation, as they are unable to visit doctors independently. Consequently, parents often realize the severity of their child’s condition after a considerable period of six months, nine months, or even a year following the infection.
The NIH research program has launched a study to find out more about children’s experiences with the condition.
However, the situation has evolved since the beginning of the pandemic, and as resources continue to grow, the quality of care can also enhance.
One aspect of the resources available for doctors treating new patients is ongoing research, according to Dr. Fidaa Shaib, the director of Baylor College of Medicine’s Post COVID Care Clinic.
Shaib expressed, “We are now filled with greater hope. With our newfound experience, we feel more at ease and confident in engaging with patients and devising a plan together. Moreover, patients arrive with their own hopes and aspirations, and we can now share with them uplifting tales of recovery.”
Shaib expressed her dedication to expanding the Baylor model by establishing additional treatment centers in regions of Texas that lack sufficient healthcare resources. This includes the establishment of a healthcare center in Pasadena, with the aim of providing services to underserved populations.
Ultimately, there is an optimistic outlook that this specialized treatment will eventually become less relied upon.
Verduzco-Gutierrez expressed the desire to investigate the causes of long COVID, implement preventive measures against COVID, and ultimately find treatments for affected patients. She emphasized that the ultimate objective of the clinic would be to cease its operations.
Neelam Bohra is a 2023-24 New York Times disability reporting fellow, based at The Texas Tribune through a partnership with The New York Times and the National Center on Disability and Journalism, which is based at the Walter Cronkite School of Journalism and Mass Communication at Arizona State University.
Disclosure: Facebook and University of Texas Health Science Center at San Antonio have been financial supporters of The Texas Tribune, a nonprofit, nonpartisan news organization that is funded in part by donations from members, foundations and corporate sponsors. Financial supporters play no role in the Tribune’s journalism. Find a complete list of them here.
