Being a COVID-19 ‘long-hauler’ is taking some getting used to

By Michael Kinney

On June 20, President Donald Trump held a political rally in Tulsa. It was his first event since the coronavirus pandemic had shut down the country.

As a journalist, I was looking forward to covering it. With the possibilities of protests, counter-protests and standoffs all intermingling in one area, it was the type of event reporters crave.

However, when the evening arrived, I wasn’t at the BOK Center in Tulsa. I was laid out on my couch, unable to move due to severe fatigue, inner vibrations and chest pains that had hit me about an hour before I was set to leave for the Trump rally. My symptoms totally erased my plans for the rest of the weekend.

This is the life of “long- haulers” which is the term adopted by a growing group of COVID-19 patients who have long-term symptoms that not only won’t go away, but for some are getting worse.

This has been a reoccurring issue for me ever since I tested positive for COVID-19 on April 1, more than 100 days ago. My symptoms will pop up out of nowhere and can last for a few hours or several days. For others, the symptoms are constant, and they go through each day having to manage something they do not understand.

According to the World Health Organization (WHO) and the Centers for Disease Control and Prevention (CDC), people infected with the coronavirus typically recover in about two weeks.

Yet, a percentage of COVID-19 patients are dealing with lingering issues weeks and months after the virus has left the body. I’ve heard from Long-haulers in Europe who were diagnosed as early as February are still trying to manage their symptoms.

“It’s such a strange virus,” Dr. Scott Michener, Chief Medical Officer at Comanche County Memorial Hospital, said of the novel coronavirus. “We’ve had coronaviruses before. I think this is the seventh coronavirus. We’re learning, but you can’t know something that you don’t have any experience with. And you can’t have good science till you do studies. One case doesn’t make a study.”

Not everyone claiming to be a long-hauler has the same symptoms. But a short list of lingering issues includes having a strange metallic taste, tingling in the arms and legs, muscle weakness, nerve pain, cough, anosmia, sore throat, delirium, chest pain, fatigue, heart palpitations, back pain, chronic shortness of breath, gastrointestinal disorders and brain fog.

With much of the medical world, governments and media focused on preventing deaths and slowing the spread of COVID 19, Long-haulers have fallen through the cracks in the United States. But as more and more Long-haulers are unable to get answers, they are starting to ask questions loudly.

In June, a petition was sent to Change.org asking the WHO to revise the guidelines to ref lect a more accurate recovery time to ensure patients are receiving the appropriate care and attention.

“Guidelines communicated by the WHO, CDC, and NHS state that ‘mild’ COVID-19 symptoms typically resolve within two weeks, with more severe cases resolving in six weeks,” the petition states. “This is proving to not be the case, and this commonly referred to information is the basis for doubt and confusion among the medical professionals caring for individuals. The result leaves these COVID-19 sufferers vulnerable from a medical, employment and social perspective.”

Those who suffer from long- term symptoms have turned to online support groups on various social media platforms. On Facebook, one group has amassed close to 14,000 members while another on Slack has more than 6,900.

The groups give long-haulers a placer where they are understood by others afflicted by the same condition and often offer suggestions or just allow members to vent their frustrations.

Many in the support groups complain about having to make several trips to their doctor or the local emergency rooms only to be told there is nothing that can be done.

One patient a online group said she tested positive in early March and has not been able to go back to work since due to the recurring symptoms such as fatigue, headaches and palpitations.

“I’m still signed off work, but I’m terrified this thing may have affected my heart,” the patient stated. “I do feel alone in that the doctor won’t see me. So, it’s just like you have to get on with it. It’s really stressful. I have just taken it [upon] myself to try to rest as much as possible, which isn’t easy with three young children, including a baby. I’m taking multivitamins but just feel that I’m trying to heal myself. Work keeps asking when I’m [coming] back, but I really don’t think, unless you get it, folks appreciate how long it takes to recover.”

In Europe, rehabilitation centers have been set up to help focus in on patients with long-term effects. In New York, Mount Sinai Health System created a post-COVID care facility.

Still, the WHO and CDC have yet to make post-COVID care a priority.

“We hear anecdotal reports of people who have persistent fatigue, shortness of breath” said Jay Butler, the CDC’s Deputy Director of Infectious Diseases. “How long that will last is hard to say.”

According to the CDC, a patient needs to test negative for COVID-19 twice before they will classify the person as virus-free. During the past month I have taken the standard nasal swab test on three separate occasions with each one coming back negative.

Yet, during that same time- span I have also dealt with some of the most intense physical reactions. Along with a host of other symptoms, there are times during the day when light and sound can cause painful reactions in my nervous system that can floor me. These are relatively new and have become more intense, which is called a relapse in the world of the long-haulers.

I’ve had other times when my entire body will tremble, or I’ll have difficulties catching my breath when I wake up.

Yet, the worst reoccurring side effects may be the anxiety and fear that can arise whenever the symptoms manifest. Convincing yourself you’re not spiraling down into a severe case of COVID-19 is difficult when your heart is racing, your chest is tightening at 3 a.m. and you have no concrete answers as to why.

“There’s this neurologic component, and then there are people that have this loss of taste and smell, that’s their olfactory nerve,” Dr. Michener said. “Those symptoms linger. And there’s definitely scarring that can occur when a patient gets it bad, like in their lungs. That scarring inhibits the transfer of oxygen from the lungs to the blood cells, and so obviously those patients are going to have prolonged, some degree of symptoms. There could be lifelong debility. We just don’t know.”

There have been tough changes I’ve had to make. I’ve had to curtail drastically my workout regime because over exertion can bring on a relapse (Have started doing Yoga). The same with too much caffeine. I have even forced myself to become a much healthier eater. (I’ve discovered Portabella burgers are not half bad).

I’m slowly finding the right groove to be able to manage being a long hauler with hopes the symptoms will disappear completely at some point. Despite a few relapses, I have been able to continue to work and do many of the things I did before all this started.

That’s a lot better than others who are suffering from much worse symptoms than me and find it impossible to even get out of bed. Many have lost their jobs and don’t see any hope of it ever ending.

They are the ones who need to understand just exactly what they are going through so measures can be taken to stop the spread of COVID-19 (Wear masks). Because, once you get it, it can be a crap shoot on how your body will respond. You may feel nothing at all or you could be the newest member of the Long-Haulers. Or worse.

Story by Michael Kinney/Michael Kinney Media

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