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Patient and Caregiver Perspectives on Living with Long COVID

This session, said Mansoor Malik, clinical professor of psychiatry at Johns Hopkins University, brings together individuals “trying to manage their lives living with a variety of conditions and symptoms that present challenges in every aspect of their lives.” Their perspectives as a patient or caregiver, said Malik, uniquely reflects the range of outcomes and experiences following COVID-19 infection. The individuals first shared their stories via prerecorded video, then Malik moderated a panel discussion.

PATIENT STORIES

Angela Meriquez Vázquez

Vázquez is a disabled former athlete, a Long COVID patient, and the president of Body Politic, a grassroots patient-led organization for Long COVID advocacy. Before getting COVID-19, said Vázquez, she was a runner for nearly 2 decades. The morning of the day she started feeling sick with COVID-19, she went for a run, but she has not run since. For Vázquez, COVID-19 started as a mild illness that progressed over weeks with an “increasingly scary set of symptoms,” including blood clots, ministrokes, brain swelling, seizures, heart palpitations, shortness of breath, confusion, numbness that progressed to an inability to walk for several days, and anaphylaxis. Now with Long COVID, Vázquez has several chronic conditions, including a mild form of ME/CFS. Because of this condition, if Vázquez pushes herself past a dynamic threshold, she will experience a relapse of symptoms like insomnia, brain fog, sleep apnea,

and migraines. Vázquez said that she has developed a “strict pacing regimen” that allows her to work from home more than full time, but she does not do much else. “I don’t socialize or enjoy my old hobbies, and I don’t leave my home, especially now that I’m considered high risk,” she said. Vázquez said that she is on the “mild end of the spectrum” of disability among Long COVID patients, and that she is lucky to have had access to patient support. She was guided to the right specialists who were “armed with research” on conditions such as POTS and ME/CFS, and potential treatments.

“We are living through what is likely to be the largest mass disabling event in modern history,” said Vázquez, and noted that the virus has disproportionately affected communities of color. There are likely millions of Long COVID patients who remain unidentified and unsupported, she said, and there is an “imperative for large-scale change.”

Treva Marie Taylor

Taylor was working as assistant director of hospitals for New York City Health and Hospitals Corporation when she contracted COVID-19 and was in the ICU at NYU Langone Health for 6 weeks. Her lungs collapsed, her organs failed, and she experienced hemorrhaging, blood clots, emphysema, and brain damage. “This disease is devastating,” she said, and it will “cripple you from the head of you to the bottom of you in everything that you do.” Because of COVID-19, she was without income for 6 months; she was fortunate to have family that could help. A little more than a year after her acute COVID-19 infection, she deals with intense fatigue and difficulty thinking, requires oxygen supplementation, and her “life consists” of going to therapy and doctor’s appointments multiple times per week. In order to run an errand or simply go outside, she has to figure out how to bring her oxygen tanks and a portable backup, and often needs someone with her because of her fatigue. Despite her challenges, Taylor said she is hopeful that she will get better and stronger.

Juan Lewis

Lewis contracted COVID-19 in April 2020 while on a work assignment in Germany. He was hospitalized in the Netherlands, including a long stay in the ICU, then underwent rehab in the Netherlands before relocation to San Antonio, Texas. Lewis said that in April of 2020 he was “fighting for my life” and since September of 2020 he has been “fighting for my quality of life.” Before COVID-19, he said, he exercised every day, had a perfect attendance record at work, received merit promotions, and was always at the top of his class. The last time he was in a hospital was 1965. After COVID-19, he is chal-

lenged with multiple symptoms, including congestive heart failure, reduced lung capacity, balance issues, brain fog, lack of smell, memory issues, headache, and gastrointestinal issues. One of Lewis’ biggest challenges has been chronic fatigue. Fatigue doesn’t “fit my personality,” he said, and it has caused issues with anxiety and depression. The financial burdens have also been a challenge, as his wife had to quit her job to stay home and take care of him.

People with Long COVID may have difficulty processing instructions or remembering what was said, said Lewis, and he encouraged medical professionals and others to ensure patients fully understand. He said that he has spent a lot of money “trying to find the magic bullet” to cure his Long COVID and appreciates the workshop’s focus on the issue. Lewis said that one of his recovery goals was to run a 5K race, but a medical professional had told him it would never be possible. He reported that over the weekend he was able to complete the race.

Lucas and Karin Denault

Lucas Denault contracted COVID-19 in January of 2021, as a 15-year-old student. His entire family had COVID-19, said his mother, Karin Denault, and they considered themselves “lucky and blessed” because they were all either asymptomatic or had very mild symptoms. Lucas was able to do his homework, work out, go outside to play, and attend remote school. However, about 6 weeks after exposure to COVID-19, he had a “massive decline in exercise tolerance.” Lucas said that he went from a “packed life” full of school and athletics and social events to a life of remote school and lacking the energy to even talk to friends. By the end of April, the family sought help at a Long COVID clinic. The clinic diagnosed Lucas with POTS; his main symptoms are fatigue, nausea, dizziness, headaches, brain fog, exercise intolerance, and heat intolerance. One of the biggest challenges, he said, is “just feeling sick all the time.” He said he feels like he “can’t escape” the feeling of being sick, and it really hinders his quality of life.

Almost a year after Lucas’ diagnosis with POTS, said his mother, he can attend school most of the time although there are days and weeks that he has to stay home. It is a “struggle to balance” his physical, emotional, cognitive, and social capabilities and needs every day. It is “like a guessing game,” said Lucas, to figure out what classes and activities he is able to take on for the day, knowing that if he pushes himself too much it can set him back weeks. Karin said that Long COVID has been debilitating for Lucas and has also been challenging for his family, friends, and teachers. It is difficult because he looks like a “normal teenage boy” who should be trying his absolute best at school and sports, but his “absolute best looks a little different now” because of Long COVID. Lucas conveyed that he wants to help people with Long COVID

get the help they need, and to help others understand how Long COVID and POTS can affect people no matter what they look like on the outside. His mother said that they are hoping to find help and relief so that he can get his future “back on track.”

DISCUSSION

These stories, said Malik, have demonstrated the suffering but also the hope and courage of individuals with Long COVID. Malik asked the speakers questions, some of which came from workshop participants.

Can you describe some of the frustrations you dealt with when experiencing symptoms without a clear cause or simple diagnostic test? How did you and your health care providers navigate the lack of information about Long COVID effects? Did you ever feel your providers were working against you rather than with you, and if so, how was that resolved?

Vázquez began by saying that “early on in the pandemic, I was met with nothing but resistance from medical providers.” When she began experiencing symptoms of COVID-19, her primary care provider told her not to come in for a test because “if you don’t have COVID-19, you’ll certainly get it” at the doctor’s office. The lack of a confirmatory positive test has “haunted” Vázquez ever since, and being denied a test “set the stage” for every subsequent interaction she had with a medical provider. When she began experiencing cardiovascular symptoms and other Long COVID complications, medical professionals all referred to the lack of a positive test and told her she was just “pandemic anxious.” Vázquez was discharged several times from the ER, with her stroke-like symptoms being interpreted as a psychiatric crisis. In these early days, Vázquez said she was “saved” by the emotional and tactical support of Long COVID patients and other chronically ill and disabled patients. About 3 months into her Long COVID symptoms, Vázquez changed to a new primary provider who immediately recognized her symptoms as potentially related to POTS and Mast Cell Activation Syndrome (MCAS). However, the lack of a positive test has continued to be a barrier; she has been denied access to every Long COVID clinic in Los Angeles.

Karin Denault said that accessing good health care for Lucas was really tough in the beginning. They saw multiple specialists, one of whom asked Lucas to run on a treadmill after being told that Lucas could barely get out of bed or attend school. Lucas said he was “excited” to run after not exercising in 2 months, but that afterward he felt very nauseous. The specialist said, “Everything looks fine,” while Lucas thought, “I definitely don’t feel fine.” This experience of being brushed off, said Lucas, shows the lack of education and information available to providers. Karin said it took Lucas about 30 minutes

to walk out of the specialist’s office, and that no one came to check on them. Karin called the Kennedy Krieger Institute, distraught, and managed to get an appointment for the next day. She said that the worst part of their experience were feelings of hopelessness in the beginning.

How well do standard functional tests (e.g., 6-minute walk test, strength testing, IQ testing) capture your symptoms? How do you describe harder-to-measure symptoms to your caregivers?

Lewis said that it can be difficult to capture Long COVID symptoms because they come and go, and various symptoms appear at different times. For example, when he saw a cardiologist, his heart looked fine, but a pulmonologist noticed that his resting heart rate was dangerously low. Lewis said that although his doctor has been a “godsend,” some doctors “make you feel real bad and make you feel like you’re not sick” when symptoms cannot be readily explained. Taylor said that her symptoms also tend to come and go, which makes them difficult to capture in a standard test. For example, she said she might do great on the treadmill one day but the next day she can barely do anything, or she uses up all her energy in a test and then feels terrible the rest of the day.

Vázquez said that her postexertional symptom exacerbation is very difficult to capture because it happens after the testing occurs. For example, she said she could easily run a mile in order to check her cardiovascular and pulmonary function, but after the test she would experience “crushing fatigue, muscular pain, joint pain, migraines, insomnia, sleep apnea, and a whole host of other symptoms” over the next 24 to 48 hours. This is a piece that is often not discussed in the moment of being tested or talking with a provider about functionality, she said, and it is important to think about when considering someone’s ability to work. Vázquez said that although she continued to work during her worst days, she was crashing every night, unable to do housework, and living in pain. Postexertional symptom exacerbation is a key symptom of both ME/CFS and Long COVID, she said, and we need to improve ways to assess its impact on patients’ lives.

The uncertainty and unpredictability of Long COVID symptoms seem to be one of the hardest aspects. How have you had to change your functioning and daily life to account for that variability? How do you cope with the pressure to resume normal activities?

Karin Denault said that while medical professionals are getting better about acknowledging Long COVID, many lay people still do not understand it. She said that people joke that Lucas is just being “lazy” or does not want to go to school, when in fact he is “the most motivated person I know.” Lewis agreed, saying that even his wife initially did not understand how sick he felt

because he looked perfectly normal. Lewis made an analogy to a cell phone that did not get fully charged but can make one phone call; like the phone, he can sometimes function normally but afterward he will need to recharge again. Lucas said that his daily life has been “completely flipped upside down” because of the unpredictability and uncertainty of his symptoms. He had big plans for his junior year of high school but has found it difficult to do much more than schoolwork. Even doing an hour of schoolwork can give him brain fog, headache, and nausea, so he takes a break to try to control his symptoms so he can get back to work because “life moves on.” Lucas said that his current approach to pushing through is not sustainable, and that he hits a regression every 3 months or so where everything catches up with him. The uncertainty is difficult, added his mother, because some days he wakes up and feels like he can take on the day but by midmorning he is ready to come home due to brain fog, dizziness, and nausea.

Vázquez agreed that the uncertainty and variability is incredibly hard, and it makes it difficult to know if she is seeing any improvement overall. For example, she said, 2 weeks ago she was feeling better and thought she might be in remission. However, after a stressful week, she was trying to fill out a form and had a “mental crash” to the extent that she was misspelling her own name and was uncertain if she was holding the pencil correctly. Looking back, Vázquez said that her body had been sending her signals to slow down, but that it can be difficult to heed these calls until her body shuts itself down.

Did you receive support from SSA, Medicaid, or employers’ worker compensation support? If not, what were the barriers to getting support, and what support did you need?

Lewis has received support from the worker’s compensation program, and it has been “a lot of paperwork.” He said they are “constantly sending documentation” to fill out, and they have required him to seek second opinions far from his home. The paperwork and other requirements are challenging, he said, and they often “play ping pong” sending papers back and forth until they are accepted. He said that people often give instructions too quickly and encouraged programs, clinicians, and others who work with patients with Long COVID to be patient and to understand that their mental capacity may be challenged.

Taylor agreed that the red tape and paperwork involved with her city benefits are enormously challenging. For over 30 years, Taylor worked in the health care field, handling paperwork, managing difficult cases, and solving problems. Now she struggles to understand and fill out paperwork, and people question her lack of ability because she looks and sounds fine to them. Taylor said she would “love for someone to walk with me for 1 day just to see what it’s like to get through a day.”

From a health system perspective, what kind of information, actions, or policies are needed to help people with Long COVID recover?

One of the things that we have heard a lot is the lack of clinical education for doctors, said Vázquez. Because we are living through a mass disabling event, she said, we cannot continue to rely on specialists to provide ongoing clinical care to Long COVID patients. Even before the pandemic, there was a lack of capacity to treat complex and poorly understood conditions like POTS, mast cell activation syndrome (MCAS), and ME/CFS; now the population of these patients has “simply exploded.” A massive education effort of primary care and pediatric clinicians is needed, said Vázquez, so that they can serve as the first line of screening and initial assessment. This will require the health care system to “get much more comfortable” with understanding and diagnosing these conditions, she said, emphasizing that even when clinical diagnostic criteria are in place, some patients on the margins will need and deserve care. Care and benefits should not be denied or delayed to this growing population just because the necessary investments before the pandemic to define and treat many of these conditions had not been in place. Malik added that even if few treatments are available for these conditions, patients need validation and care for their symptoms from doctors and caregivers.

What has been the effect of COVID-19 and Long COVID on your finances, your personal relationships, and your caregiver networks?

Taylor said she went without income for 6 months, which required her to drain her savings and to rely on help from her family, friends, and strangers. She now receives Social Security benefits, but she is still relying on her savings and her pension to survive. Lewis and his wife had to sell their home and buy a single-story home because of his inability to walk up and down stairs repeatedly. His symptoms have also affected his relationship with his new granddaughter; he said he avoids picking her up and holding her because he is afraid he will get dizzy and fall over. Karin Denault said that Lucas is fortunate because both of his parents were able to continue to work and had savings available to pay his medical bills.

For Vázquez, the biggest effect of Long COVID was in the workplace. She had just started a new job when she got sick, and she did not feel like she could take time off of work or reveal her struggles to her employer. She said she was not certain if she could even get accommodations because at the time, she was being told her symptoms were all in her head. Vázquez hid her disabilities and her condition from her employer for many months, for fear of not being believed or of losing her job. She noted that her employer-based health insurance is critical to her care, and that it feels like she is working to get health care, and that this health care is the only thing that allows her to work.

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