Are You a Long-Hauler?

This spring it became apparent that people who had seemed to recover from a previous COVID-19 infection were still suffering from it weeks and months later. And these cases kept appearing. According to my own calculations, based on public health data, more than 70,000 New Yorkers may be struggling with long-term health conditions after having first contracted COVID-19. Surprisingly, many of these post-COVID patients experienced worse symptoms many weeks after first contracting the virus when they should have been on the mend.

WHAT EXACTLY IS A LONG-HAULER?

First of all, with some viruses, such as the severe acute respiratory syndrome (SARS), which COVID-19 is classified, and Middle East respiratory syndrome (MERS), it is not uncommon for people to experience some form of a post-viral syndrome, which means that it may take a longer time than expected for patients to feel better. Symptoms such as extreme tiredness and weakness, headaches, difficulty breathing and shortness of breath, and confusion may last for many months after having COVID-19. The previous thought that COVID-19 was only a three-week illness has been reexamined.

A long-hauler or long-COVID case, as we prefer to call them, is used to describe a patient who had COVID-19, and continues to fight viral symptoms or the symptoms appear weeks after the worst of the initial viral infection has already passed. There seems to be no common denominator on who will become a long-COVID case patient or even what the long-term effects of the virus are and whether or not the on-going symptoms are temporary or will be permanent. For example, some patients may develop permanent lung fibrosis, which is scarring of the lung tissue, but other patients may have respiratory problems that will slowly resolve over time. Right now, it’s still very unpredictable. COVID-19 has been associated with many long-term heart problems, including inflammation of the heart muscle (myocarditis) or cardiomyopathy that prevents the effective pumping of the heart muscle, in addition to abnormal heart rhythms.

Kidney damage or failure is also a major concern. Here at the Mount Sinai Health System it has been reported that this spring 46 percent of our admitted patients had some form of acute kidney injury (AKI) and shockingly more than 17 percent needed dialysis. Many of these patients that survived are now dealing with chronic kidney disease.

WHY IS THIS HAPPENING?

As we learn more and our research improves, it seems that for some patients their immune systems go into overdrive and produces a storm of inflammatory in an effort to fight the virus. Sepsis can also occur which can lead to organ failure as well. Mechanical ventilation, while helpful for some, may reduce blood flow in other parts of the body which can damage other organs such as the kidneys.

WHAT CAN BE DONE?

Here at Mount Sinai we were the first in the city to create the Center for Post-COVID care where we have already seen more than 500 long-COVID cases, and the demand for treatment has only been rising. Because the disease can affect so many different parts of the body and organs such as the lungs, and heart and kidneys, to name a few; it can be very difficult for patients to visit so many different medical specialists. Ultimately, all of the patient’s care should be fully integrated. The idea for the Mount Sinai post-COVID center was to make sure that there was one place for patients to receive a thorough evaluation and integrated treatment plan that involves primary care physicians, infectious disease specialists, cardiologists, pulmonologists, nephrologists and, of course, social workers and behavior health specialists, as depression is quite common in exhausted and demoralized patients struggling to finally feel better. Research wise, treating long-COVID patients has given us great insight and is helping us manage the disease more effectively, and to help better predict future complications and long-term health conditions of the disease. By testing for levels of antibodies, analyzing co-morbidity factors and examining heart functioning, for example, we are able to follow and evaluate these patients more closely over time to find better treatment therapies.

WHAT’S THE BOTTOM LINE?

The effects of COVID-19 for some patients can be long-lasting or even permanent and it can be very devastating. From decreased lung capacity and difficulty breathing, to tiredness and weakness, to impaired kidney function, we are only just beginning to understand the toll this disease can take. A team approach that integrates different organ specialists with primary care physicians as well as behavioral health providers is an important and efficient way to help patients manage this disease and help people try to overcome it. Make sure to reach out to your physicians as you don’t have to fight this disease on your own.

Zijian Chen, M.D. is an Assistant Professor of Medicine (Endocrine, Diabetes and Bone Disease) and Director of the Center for Post-Covid Care at Mount Sinai.