Thank you, Baker.
I was a healthy 38-year-old … but now I have long COVID
Nov 17, 2021 / Margot Gage Witvliet PhD
https://ideas.ted.com/my-life-with-long-covid/
Long COVID patients are counting on you to get vaccinated and help slow the spread of COVID, so we can venture out in public without fear.
Margot Gage Witvliet PhD is a social epidemiologist and assistant professor at Lamar University in Texas. You can follow her on Twitter and Instagram at @DrGageWitvliet
Imagine being 38 years old, healthy, a nonsmoker with no pre-existing health conditions, and then waking up one morning feeling like you were being suffocated by an unseen force.
In March of 2020, that was my reality.
Ten days after returning from a trip to Europe, I started having flu-like symptoms. I became weak overnight and had trouble breathing. It felt like jogging in the Rocky Mountains without being in condition — only I wasn’t moving.
I went to the hospital, where I was tested for COVID-19. In those early days of the pandemic, I was one of the first people in Texas who was given a non-FDA-approved COVID test, and my results came back negative.
I’m part of a growing group of people who’ve had COVID and never fully recovered, a condition thought to affect between 30%-60% percent of those infected with COVID.
As a social epidemiologist who deals with big data and knew that COVID cases were on the rise, I was certain it was a false negative. The test itself even carried a warning that false negatives were possible and that clinical observations and patient history should be taken into consideration. But I was sent home, and by the end of March 2020, I thought I was on the road to recovery.
Then, in April, I had a seizure and was rushed to the hospital. At the ER, the doctor reviewed my medical case history and concluded that I had COVID. She said that I was lucky and tests showed my organs did not have lasting damage.
But after the seizure, I lay in my bedroom for weeks with the curtains drawn, because light and sound hurt. I started suffering from tremors, extreme migraine headaches, a feeling that I was walking on rocks, and a pins-and-needles sensation that radiated through my body. There were times that I needed a cane to help me walk, and I knew something was seriously wrong with me.
Fatigue is one of the most common persistent symptoms, but there are many others, including tissue damage in the lungs, extreme exhaustion after daily tasks, and brain fog.
It was not until months later that I discovered I was a long-hauler — part of a growing group of people who have COVID-19 and have never fully recovered. Later, we would be given an official name of Post-Acute Sequelae of SARS-CoV-2 infection (PASC), which is estimated to affect between 30 percent and 60 percent of people who become infected with COVID-19.
The US Centers for Disease Control states that post-COVID conditions can appear four or more weeks after initial infection. Fatigue is one of the most common persistent symptoms of people who suffer from long COVID, but there are many others, including pulmonary fibrosis (tissue damage in the lungs), post-exertional malaise (extreme exhaustion after gentle exercise or daily tasks), and brain fog or debilitating cognitive effects.
Treatment options for long COVID are not robust, and they’re mainly geared towards treating the symptoms, organ by organ with anti-inflammatories for the lungs, beta blockers for a racing heart rate, etc. Although some innovative options are being explored, their use for long COVID remains unproven until they are studied more widely.
I have felt like a guinea pig this past year, with doctors not knowing what to give me for treatment. In the beginning, I was given an inhaler and topical medicine to treat my pain. Then I was put on a steroid inhaler that made me sicker. My own treatment focus has been geared towards taking a multitude of supplements.
This journey has been a nightmare for me, not only because of having to deal with a life-threatening illness but also because I belong to a large group of people who had a negative COVID test or could not get tested at the start of the pandemic. Recent research shows that as few as 1 to 3 in 100 cases of COVID were being detected in early 2020. Many of us have struggled to be believed by doctors. This is a noticeable pattern for women, and in particular women of color, which led me to launch an online support group for women of color from around the world.
Saying a prayer some light reaches her.
Gotta know what the surgery was and what happened before jumping to conclusions.