Alexandra Hackett tested negative for COVID-19 back in March when she had flu-like symptoms. Today, she faces terrifying “long-hauler” symptoms.
I am not the same person I was seven months ago, that’s for sure. Fatigue hovers over me like a cloud. There’s a heaviness in my chest most days. Often it feels like a dull ache or a burning sensation. It’s challenging to concentrate for extended periods. My memory is hazy at times. I start to do something and forget what I had just started. Then there’s the depression and anxiety.
It’s like my light has been dimmed both in a physical and mental sense. After months of strange symptoms, a hospital stay, a battery of tests and a series of doctors’ visits, signs point to evidence of the long-term effects of COVID-19. I am considered a “COVID long-hauler,” among the thousands of people experiencing an array of symptoms months after initially contracting the virus.
Flu or COVID-19?
As the communications manager for Magee Rehabilitation and a member of the Jefferson corporate marketing team, I, like others, was directed to start working from home in mid-March for safety reasons due to the pandemic. On Saturday, March 21, I went for a run through my Philadelphia neighborhood and notably had to stop a few times to catch my breath. “That’s odd,” I thought. As soon as I got home, it was like all of the energy drained out of me. I got freezing cold and tired. Hours later I broke out into fever and sweats. In the middle of the night I had a virtual visit with a Jefferson doctor via the JeffConnect telehealth app. She told me it was possible I had contracted COVID-19 or come down with the flu (even though I had the flu shot nine months prior). As a hospital employee, it was recommended that I get tested for the coronavirus.
I drove myself in a weakened state to Jefferson’s Center City testing site the following day. After that, all I could do was sleep for days. I was exhausted. My body ached and I cycled between fever and chills. Later that week, I was notified that my test results were negative, so I assumed I had the flu, although I was never tested for it. I started to feel better after a week, resumed my duties working from home and moved on with life.
What is going on?
Even though I am typically a very active person, I gave myself a solid month before I started working out again so I could fully recover. It was the end of April at this point and all of the gyms were closed due to government restrictions. However, I did start running outside.
Four weeks passed since I thought I had “recovered,” yet my endurance was zapped. I couldn’t run more than a few blocks until my heart would start racing and it felt like I wasn’t getting enough air in my lungs. Then I would walk a block or two to catch my breath and run again. This went on for months. Instead of getting better, the symptoms got worse. At first, I dismissed them and attributed the fatigue to the impact of the flu. Then as spring turned to summer, I started attributing the fatigue to the heat and humidity, although admittedly it never had impacted me like this before. I started to think maybe I developed exercise-induced asthma and intended to bring it up to my primary care physician during my September wellness visit.
In August, I started taking spin classes again, still thinking maybe I wasn’t pushing myself hard enough to get back my stamina. My symptoms worsened so much over a matter of weeks that I could no longer ignore the situation. I started experiencing intense heart palpitations and chest tightness during spin class, which turned into chest pain in the hours that followed. It got to the point one day where the chest pains never went away. Terrified I was experiencing a heart attack, I asked a friend to take me to the emergency department at Thomas Jefferson University Hospital. I was kept overnight for observation while they ran a series of tests, including a coronary angiogram. That is a procedure in which dye (contrast material) is injected into your body via an IV, and X-ray imaging looks at your heart’s blood vessels. The test is generally done to see if there’s a restriction in blood flow going to the heart.
I laid in a hospital bed that night with wires to my chest and abdomen to monitor my heart. An IV was pumping fluids into my arm. I was alone in the room with the door shut. The TV was on and I could hear people in the hallway, but it was all just noise in my ears. Tears streamed down my face as I wondered what was wrong with me. I had been experiencing chest pains for days. Doctors were telling me they thought it was cardiac-related, but test results showed that I am very healthy. Aside from a kidney stone attack and coming down with mono in 2016, I had never experienced an illness of significance.
Stopping Me in My Tracks
None of my symptoms made any sense, but I knew whatever was happening with my body was tied to when I got sick in March. Prior to that, I worked out five to six days a week, including running, spin classes and Crossfit. I loved the intensity of the workouts, the challenge of Olympic weightlifting and loved that my 40-something-year-old body was capable of doing these things.
I’ve been a runner for more than 20 years. I have completed four marathons and 12 half marathons. I never considered myself a fast runner, but I have always prided myself on my endurance. I could lace up my sneakers, put in my earbuds and hit the pavement. As I listened to whatever music suited my mood on that day, my mind would drift from admiring the surroundings, to my hopes and dreams, projects I was currently working on, and working out life issues in my head. Running was my safe haven. It has been a constant in my life. Now I couldn’t jog more than two or three blocks.
The coronary angiogram showed my heart was very healthy. However, the test showed signs of lung damage in the form of mild emphysema. I was stunned. How is this possible? I have never smoked a day in my life and didn’t live in an environment that exposed me to secondhand smoke. Taking into consideration the lung damage, chest pain, heart palpitations and breathing issues my Jefferson primary care physician, Dr. Jessica Bricker, believes it is likely I had a false-negative test for COVID-19 —and did not have the flu—and that what I am going through is post-viral syndrome, or post-COVID-19 syndrome.
Some people continue to experience symptoms for weeks or even months after contracting the coronavirus. Others, like me, feel better for weeks, then relapse with old or new mysterious symptoms. Medical tests sometimes provide little or no answers. We are referred to as COVID long-haulers.
I met with Jefferson cardiologist Dr. Gregary D. Marhefka the week after being discharged from the hospital. They did a cardio echo, which is an ultrasound that shows my heart beating, rather than a still image. He also had me wear a heart monitor at home for a few days. Every test has shown my heart is healthy.
I also met with Jefferson pulmonologist Dr. Saqib Baig in the days following my hospital discharge to discuss the emphysema, breathing problems and chest pain. A pulmonary function test showed my lungs are working great. In fact, when compared with other women my same age, height and ethnicity, my lungs were functioning over 100%. He admitted though that may not be a fair assessment of any deficits I may be experiencing. Since I was so active prior to getting sick, it’s possible that my lung capacity was better than it is now. Although I was relieved to learn my lungs are functioning well at rest, it doesn’t address why I am having trouble catching my breath when I exercise.
Dr. Baig showed me the coronary angiogram image with the specks of emphysema on my lungs, but he doesn’t believe that’s what is causing my chest pain and breathing issues. The pain I am experiencing, he explained, isn’t the same as what’s described by COPD patients, which is a sense of chest pressure. He believes the aching and burning sensation in my chest and breathing difficulties may be due to an alternation in nerve sensation and perception, the cause of which is not understood.
In the weeks following the hospital stay, I started to become aware of cognitive impairments. Much of my work is project-based and involves a lot of writing. I find it takes an immense amount of concentration and energy to complete work tasks that I used to finish with relative ease.
One morning, I sat down at my laptop and I was drawing a blank. I simply didn’t know where to get started that day. A panic attack set in and I started crying. I kept thinking, ‘This isn’t me! What is happening?’
Looking back, I can see that my attention span, memory and ability to focus had been diminishing since the summer. I love to watch movies and binge-watch TV shows. I can’t sit through a single show. Typically, I am a voracious reader. Now I can’t make it through more than a chapter or two. Some days it feels like there is a pinball machine of thoughts bouncing around inside my brain. Fortunately, I have been able to continue working, but it takes a great deal of mental gymnastics to get through the day.
I’ve been told these symptoms may be due to inflammation in the brain caused as a result of the virus. What I have been experiencing is similar to that of a concussion, although a concussion impacts a different part of the brain. It was recommended that I start neuro rehab with a speech language pathologist who works with concussion patients to help with the brain fog and with strategizing my day. I recently started those therapy sessions at Magee Riverfront outpatient facility.
In addition to the physical and cognitive symptoms, I have been walloped with depression. I get emotional very easily. There are daily tears either due to the pain or the frustration that I am not the person I was before March.
My care team consists of at least six medical specialists to manage the array of symptoms: pulmonologist, cardiologist, primary care, psychiatrist for antidepressants, mental health therapist and speech language pathologist.
My goal is to exercise two to three days a week. No Crossfit. No spinning. Doctors say it’s safe for me to go for a three-mile walk-run. I’ll jog for about two minutes and then it feels like a film has formed over the passages in my lungs as if I am breathing through a filter. When it becomes too difficult to continue and my energy dissipates, I walk for a few minutes. This allows me to catch my breath; it feels like my lungs open up and then I can start jogging again. I am using an inhaler prior to exercise, but it provides minimal relief. Some days, the heaviness, discomfort and fatigue are too much.
I am learning how to read my body to know when to push myself and when to rest. My pulmonologist, Dr. Baig, says it’s possible to regain a good amount of my stamina, but it will take a lot of work, possibly up to a year. So far all of the tests on my lungs have been conducted while I am at rest. Soon I go back to the pulmonologist for a cardiopulmonary stress test, which I hope reflects some of the difficulties I am experiencing. I’ll tell you more about that in an upcoming article.
I wanted to share my story to raise awareness of the impact of COVID-19 and what it means to be a COVID long-hauler. False-negative tests are possible. Perhaps you got sick in the spring, but due to the lack of test kits at the time, you were unable to get tested for the coronavirus. If you are experiencing random, unexplained symptoms, I encourage you to advocate for yourself and seek medical attention.
As cases start to rise again in our region this fall, it’s crucial for people to understand what this means for the health and well-being of you and your family. Wearing a mask, social distancing, washing your hands, and using hand sanitizer isn’t just about keeping the elderly and immuno-compromised safe. COVID-19 is having serious, long-term impact on people of all ages who were relatively healthy prior to contracting the virus. I am one of them.