Long COVID Examining Long-Term Health Effects of COVID-19 and Implications for the Social Security Administration: Proceedings of a Workshop (2022) / Chapter Skim
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4 Patient and Caregiver Perspectives on Living with Long COVID
4 Patient and Caregiver Perspectives on Living with Long COVID
Pages 45-52
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From page 45... ...
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.
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From page 46... ...
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.
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From page 47... ...
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.
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From page 48... ...
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.
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From page 49... ...
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.
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From page 50... ...
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.
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From page 51... ...
, 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.
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