The COVID-19 pandemic will hopefully wind down this year. What happens next with these patients? A powerful discussion with Eve Leckie (@browofjustice), RN, CCRN, formerly of the CVCC at Dartmouth-Hitchcock and now disabled after contracting COVID. Learn about their acute course of illness, the challenges of navigating the healthcare system with this new disease, and their persistent, poorly-understood symptoms.

Takeaway lessons

* For Eve, orthostasis, heart rate and blood pressure abnormalities (e.g. POTS), and severe persistent fatigue, weakness, and “brain fog” are hallmarks of their chronic symptomatology. Shortness of breath, nerve-type symptoms (paresthesias, twitching), and intermittent fevers also continue to occur without a clear cause. Steroid courses seem to bring relief from some symptoms.* Ground glass opacities and moderate airway thickening persists on imaging. In Eve’s case, their baseline asthma no longer responds to bronchodilators.* Some “long haulers” have developed a criterion that most patients will have improvement in symptoms by 4 months post-infection, but there is a subset who does not fit that model.* Patients who were advised to avoid healthcare, presume positivity, and defer testing now may face difficulty “proving” they had a definite infection for purposes like continued care or disability claims.* Lack of understanding of this disease leads to a lack of diagnostic “boxes” to categorize symptoms, which often leads to dismissal and “non-diagnoses” of functional disorders or conversion syndrome. Until the scientific model is understood and diagnostic criteria have been validated, all that’s available is patient experiences, which should be trusted.* Practical challenges like fatigue and cognitive issues can make dealing with healthcare, insurance, and supporting one’s self and family almost impossible without substantial assistance.

Links

* A running Twitter thread on Eve’s account chronicling her experiences with the disease.