Living With Long COVID

There is no specific test to diagnose long COVID and people can have a wide variety of symptoms, affecting all organ systems. This presents a real challenge for healthcare providers to make a diagnosis and to estimate the number of patients currently afflicted with long COVID, which is likely to be at least 5 million and growing. Whatever the exact numbers are, it is a huge number of people with new chronic health conditions greatly impacting our well-being, our healthcare system, and our economy.

Living with Long COVID

In this blog I describe some of the many issues that long COVID patients and their family caregivers face in navigating this new, and still poorly understood, healthcare challenge. Living with long COVID and caring for family members with long COVID can be very difficult. As I stated earlier there is no single test for long COVID and many of the symptoms cannot be pinpointed or explained by tests. What is important is to establish a connection with a trusted health care provider, who will oversee the initial medical evaluation, provide treatment and follow-up, and can make referrals to specialists as the type and severity of symptoms dictate.

Because of the complexity of symptoms and organ systems affected by long COVID, the process of medical evaluation and treatment may well require the participation of multiple medical specialists over time. Especially, when primary care providers and their consultants work in different healthcare systems and locations, the coordination and exchange of medical records can be cumbersome and slow, leading to frustrated patients and family caregivers

The RK360^® Cloud Health Record App

To address these issues, Prosocial Applications, Inc. of Boulder, Colorado, recently released an app with Apple and Android versions—the RK360^® Cloud Health Record App. This app will streamline the ability of patients and family caregivers to search for local and regional providers, electronically collect personal medical records from dispersed providers, and control the sharing of medical records among these providers. The app allows for the monitoring of personal health information for up to four family members. These personal medical records are kept securely in the cloud and fully protected by the HIPAA Privacy Rule.

An important group of patients that may well benefit from the RK360® app are formerly healthy young and middle-aged people dealing with new or lingering symptoms of long COVID. They also have a difficult time, since they often do not have a primary care provider, don’t have insurance and have not established a solid connection with a healthcare system. They often are technology savvy and welcome greater control over their and their family’s healthcare. They may also find themselves in the new role of caregiver for a family member with long COVID and are looking for resources to better manage the care of their loved ones (link to blog “Enabling Family Caregivers”). The RK360® App gives these users the ability to manage their own and their family’s healthcare records.

Internet Resources

These younger and previously healthy women and men with possible long COVID may feel that their symptoms will resolve by themselves and are impatient for a diagnosis and for resolution of these symptoms. Frequently they turn to the Internet for medical information and advice, which unfortunately is full of misguided and misleading information.  When seeking information about COVID-19 and Long COVID on the Internet, the best place to start is the Centers for Disease Control and Prevention (CDC) at https://www.cdc.gov. The site will provide you with links about long COVID updates, statistics and ongoing research.

Another useful resource for patients, caregivers and providers is the extensive information provided by the COVID-19 Longhauler Advocacy Project at  https://www.longhauler-advocacy.org. Its mission is advocacy, education and support in order “to help longhaulers and their physicians work as a team in an attempt to get the patient back to good health and regain quality of life.”

In addition, I recommend looking at two patient and caregiver support groups for COVID-19 and long COVID: (1) Survivor Corps at https://www.survivorcorps.com includes a program for finding Post-COVID Care Centers (PCCC) in your area; and (2) Body Politic COVID-19 Support Group at https://www.wearebodypolitic.com/covid-19.

Working with Long COVID

For those who are struggling to continue full or part-time work while experiencing disabling symptoms from long COVID it is important to know that as of July 2021, long COVID can be considered a disability under the Americans with Disabilities Act. The Act stipulates that employers must offer accommodations to allow workers with disabilities to continue working. A conservative estimate sets the number of people currently out of work due to long COVID at 4 million full-time work equivalents, or 2.4% of the US working population. The Washington Post recently reported that during the pandemic four times as many Americans were not working in order to take care of adult family members than those not working to provide child care.

Ongoing Research

The CDC, the National Institutes of Health, other federal agencies, advocacy groups and many academic medical institutions and research agencies throughout the world are working hard to learn more about the early and late effects of COVID-19 infection, who gets them and why. Studies are underway to learn more about the symptoms and diseases experienced by patients with long COVID, who is likely to get these symptoms and who is protected, how these problems limit people’s daily activities, how vaccination and possibly other treatments have a role in the prevention of long COVID, and how to best provide resources and guidance to patients and caregivers to navigate the complexities of this challenging group of diseases.