I contracted COVID-19 in early March after spending three hours at the New York City DMV. As a mostly healthy female in her 40’s, I’d managed my asthma for twenty years with daily prescription medication, inhalers, and steroids. I own an air filter, a peak flow monitor, and dust protecting pillow cases and sheets.

During attacks, I learned how to practice shallow breathing, anxiety calming tricks, and that drinking caffeine helped open air-ways. If not for my experience dealing with my pre-existing condition, I most likely would have ended up in the hospital on oxygen—or worse. The inconsistent medical care I received during my ordeal led me to become my own disease detective.

Two nights after my visit to the DMV, I woke up gasping for air. My sheets and pillows were drenched in sweat, my face clammy and flushed. My lungs felt as if they were filling with water. Electrical tape was squeezing my upper body. Desperate for oxygen, I searched for my rescue inhaler in my nightstand. As I sucked in the albuterol, I slowly counted to ten. White pinpricks of lights filled my eyes as I crawled to the bathroom, turned the shower on hot, and closed the door. As the steam filled the tiny space, I sat on the cold floor and prayed it was an asthma attack.

The next day an extreme heaviness depressed my chest, while my nasal passages closed, a cement-like substance sealing them off. My breathing sounded like a horse that had run around a racetrack, labored and choppy. My body and eyes ached, leaving me unable to move. I imagined a tiny straw poked into my chest that moved tiny bubbles of air up into my mouth.

I called my primary care physician, anxiously detailing my symptoms. He sounded concerned but thought it was most likely a severe asthma attack or the flu. I explained that I’d already had the flu for three weeks around the December holidays; this was not the same. He highly recommended I stay at home and only go to the emergency room if things got worse.

Reports in NYC for admittance to the ER were frightening —a 12 hour plus wait just to be seen, without any breathing treatments while you idled next to dozens, if not hundreds, of sicker patients. After so many terrifying hospital experiences for respiratory distress, I wanted to avoid another one at all costs. On Friday March 13th, I decided to go to Urgent Care first where I could get a nebulizer treatment. Over the years, the fast moving staff there had provided instant aid.

Examinations there showed my temperature was 99.9 and my blood oxygen count was eight points lower than usual, not good but not considered a dire level. When I asked for a coronavirus test, I was told that since I hadn’t traveled or been in contact with anyone positive, I didn’t meet the criteria. I mentioned I’d been at the DMV and was given a prescription for oral steroids.

By Sunday the 15th, my breathing worsened. I dragged myself to Urgent Care again, where they gave me two successive nebulizer treatments, a chest x-ray for pneumonia and a blood test for lung clots. My blood pressure had dropped 30 points and my temperature was 97.2.  There was no pneumonia or clot; I was sent home with a prescription mist for a home nebulizer device that I had lucked out on getting delivered that week.

The next day I started to feel better. I could talk on the phone and eat normally. But two days after, my right lung felt like someone was sticking a sharp knife in the front and back of it. For days, my head pounded. One of those days, I spent in the bathroom throwing up. I knew this was not an asthma attack.

My doctor finally agreed to administer a test. I wore blue dishwashing gloves to his empty office at 8 am. He did a quick nasal swab of the lower half of my nose and told me results would take three to four days. He stopped my oral steroids, saying it was making it worse, and switched me to an antibiotic and a prescription cough capsule.

A week later, my illness had not abated. I tried to sleep sitting up in bed so my lungs didn’t fill with fluid. My body alternated between shivering and perspiring. One particularly bad night, I worried I wouldn’t wake up in the morning. I was alone, two hours away from my family, who were left to soothe my fear and convey their concern through text messages because shortness of breath made calls excruciatingly painful.

Increasingly frenetic, I attempted to compile all my financial accounts and passwords to email to my parents in Philly, but found it impossible to concentrate. Did I even have a will? Where was my life insurance policy? Trying to access my situation was overwhelming. I pictured my mom and dad hunched over a tiny screen and my shoulders shook. I wanted to cry, but tears increased the congestion, making it nearly impossible to get any oxygen. I turned on my meditation app, concentrating on the soothing music while counting to 100 over and over.

Nine days after I took the test, it came back negative. I felt confused and deflated. I spewed questions to my GP: had he gotten enough of a sample with just the lower half of my nose? Was I still a carrier if I didn’t test positive but had all the symptoms? Could I leave NYC to go see my family? Could I still catch it? How in the world were people who were asymptomatic testing positive? Was it a coincidence I had a severe respiratory illness for the past month?

My doctor acknowledged it was likely a false negative, given my condition, the lack of standardized testing, and various lab system equipment. Not all of his samples had returned in the chaos. He emphasized he was treating me as if I had COVID and that the test wouldn’t change that. He ordered another chest x-ray.

Prior to my radiologist appointment, I packed a bag of clothes and my glasses, believing I’d be rushed to the ER. Instead, the staff recommended I go home to wait for the results. Walking the six blocks back my apartment, I leaned on each stop sign at every intersection to rest. By the time I reached Park Avenue, I had to sit down on my bag, propping myself up against a building. Dimly I noticed the budding pink flowers on the scrawny trees, the flash of delivery bikes paddling in the middle of the street with red bags hanging off of baskets. I decided if I saw a cab, I would head to NYU hospital.

However, my former experiences in the ER discouraged me from returning.

I remembered running along the East River after 9/11 amid the ash-filled air, then spending nearly a day waiting in the ER for an asthma treatment. I flashed to the blackout of NYC in 2003, where I huddled in my dark bathroom all night sweating from the steam of the hot shower while I chugged diet coke to manage an attack. When the electricity came back on, I’d waited endlessly in the hospital to get relief for my inflamed lungs.

Rattled by these memories, I slowly lifted myself up from Park Avenue, determined to treat myself at home with the nebulizer machine.

Five days after the chest-x-ray, my overwhelmed internist shared there was no fluid present in my lungs. The outcome should have provided relief, but I felt helpless. Using the breathing apparatus six to eight times a day had caused rapid heart palpitations, constant shaking, and worse chest pressure. I looked up reports of false negative tests and learned there was a growing concern that 5 – 15 percent of them results were incorrect. There was scant information about Asthma and COVID-19.

Steroids, antibiotics, Flonase, and Tylenol were not helping me get better. Seeking another opinion, I scheduled a video call with an ER physician at NYU Langone. She informed me that they were seeing an increasing number of patients, like me, who were indeed positive after an initial negative finding. However, those admitted for treatment currently were extreme cases that needed extraordinary measures. Because I could speak in sentences, she encouraged me to try to recover at home.

Despite feeling better for two days after that, the illness came back with a vengeance. I spent six successive days in bed, unable to walk without gasping, while my eyes grew swollen and red-rimmed. Delirium set in. My apartment looked like a medical tent. I used my inhaler before I needed to go to the kitchen or bathroom.

In a check-in with my GP, he cautioned it could take up to six weeks or more to recover. I tried not to sob. He had seen evidence that the symptoms waxed and waned. And, if it was any consolation, it was obvious I had the coronavirus despite the negative test. (It was not.)

Seven weeks later, my breathing is almost normal, as is my appetite. I’m able to slowly walk up and down the hallway of my apartment building. Managing a chronic lung disease for two decades taught me how to care and advocate for myself. I knew when to seek the ER, or Urgent Care or when to use home treatments, which helped me be able to stay put at a time when going to a hospital meant putting more of a strain on scarce resources along with the probability I could contract pneumonia.

I’m grateful more than ever for the ability to breathe. But the experience has left me frustrated. Inconsistent diagnoses from doctors with limited national data, multiple federal roadblocks for obtaining tests, and lack of significant help from the government caused additional stress on top of my illness. I’m one of the lucky ones who pulled through on my own. But I’m fearful of the future, especially if the administration doesn’t invest in a coherent strategy to combat this disease.