COVID-19: Help is on the Horizon Long Haulers

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Original story posted on: September 20, 2021

Those who suffer from post-acute sequelae of SARS-CoV-2 infection, are referred to as long haulers. 

When COVID-19 swept across the county in late 2019 early 2020 scientists and physicians did not know what if any long term affects COVID-19 survivors would have. The main concern has been preventing the virus and treating the patients with active covid.

As of Sept. 19, 2021, there have been 42,533,023 confirmed positive covid cases with 686,427 deaths in the United States.  As the numbers of positive cases goes up the number of survivors will increase which means more long haulers. Many who have survived COVID-19 including myself took months/years to recover and many of us are still struggling. 

Those who suffer from post-acute sequelae of SARS-CoV-2 infection, are referred to as long haulers.  Many patients who had mild to moderate cases can still struggle with ongoing symptoms.  Some of the common symptoms include the following (not all inclusive):

  • Brain fog
  • Depression or behavioral health issues
  • Headaches
  • Loss of smell or taste
  • Chronic cough
  • Pulmonary symptoms
  • Lung scarring
  • Shortness of breath
  • Dyspnea
  • Chronic fatigue
  • PTSD
  • Chest pain
  • Cardiac conditions
  • Neurologic conditions
  • Myalgia
  • Joint pain
  • Kidney dysfunction

It is not just patients who were symptomatic but asymptomatic patients can also suffer the long-term effects of covid. COVID-19 is not just a simple virus that affects the body but inflammatory and immune mechanisms that affect the body as well. These symptoms can last months and in some cases years and some patients will have permanent conditions related to the virus. For some patients who received the vaccine, the symptoms disappeared but not for everyone.

It is difficult for practitioners to sometimes treat the long haulers.  Long haulers want their practitioner to listen and understand their symptoms are real. But early during covid many practitioners did not know enough about covid so obtaining treatment sequelae to covid-19 has been a struggle for most.

The support groups for long haulers have helped us to understand the sequelae effects of covid and for us to share our symptoms.  Currently 44 states have started COVID-19 recovery programs for long haulers.  If you are a long hauler a support group may help. I get messages from long haulers every day to discuss their symptoms and ask questions.  Having that support from those who understand what you are going through is invaluable.  But always rely on your practitioner to assist and guide you.

I can validate that from personal experience. I am a long hauler. I unfortunately came down with covid in March 2020 and am still experiencing some of the symptoms like occasional brain fog, chronic cough, shortness of breath as well as a modified loss of smell and taste.  Certain foods now don’t taste the same and the smell of bread makes me nauseated. Initially it was difficult for my doctor to treat my symptoms once the active virus had resolved.  But fortunately for me she listened and referred me to a pulmonologist who took over my care and I am doing well today.  But the PTSD is real.  It has taken me over a year to feel comfortable going to the supermarket or going to a public place.  I still am diligent about wearing my mask and as soon as the vaccine was available, I encouraged my entire family to get vaccinated which they did.

Long covid affects more than just health. It will cost the government, health care systems, the insurance industry as well as patients for a long time to come. Medical bills can mount up and can cause financial hardships for many patients including job loss for patients who struggle to work.  Many patients will have lifelong symptoms or condition related to COVID-19 and will require long-term treatment.

There is some hope on the horizon however, The Mayo Clinic has launched a program nationwide to help COVID-19 long haulers.  The National Institute of Health launched the “RECOVER Initiative” awarding $470 million to support large scale studies to help COVID-19 long haulers.   Researchers will evaluate tissue samples from patients, look at autopsies, analyze data from millions of electronic health records and use smartphone apps and wearable devices to gather real-world data from COVID-19 survivors in real-time.  The Mayo Clinic in Rochester, New York University and Massachusetts General Hospital have been selected as three of the core sites.  Mayo Clinic was given $40 million to curate, collect and store distributed clinical samples

The RECOVER initiative plans will launch several clinical trials related to this research over the next few months. If you are a COVID-19 long hauler and are interested in participating in the study you can go to this website to learn more about this initiative at:https://openredcap.nyumc.org/apps/redcap/surveys/?s=TYCLM7PE97

Programming Note: Listen to Deb Grider report her story live today on Talk Ten Tuesdays, 10 Eastern.

Deborah Grider, CPC, CPC-H, CPC-I, CPC-P, CPMA, CEMC, CCS-P, CDIP, Certified Clinical Documentation Improvement Practitioner

Deborah Grider has 35 years of industry experience and is a recognized national speaker, consultant, and American Medical Association author who has been working with ICD-10 since 1990 and is the author of Preparing for ICD-10, Making the Transition Manageable, Principles of ICD-10, the ICD-10 Workbook, Medical Record Auditor, and Coding with Modifiers for the AMA. She is a senior healthcare consultant with Karen Zupko & Associates. Deborah is also the 2017 American Health Information Management Association (AHIMA) Literacy Legacy Award recipient. She is a member of the ICD10monitor editorial board and a popular panelist on Talk Ten Tuesdays.

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