Miscounted
I have been sick with the symptoms of COVID-19 since March 11, 2020. Yet as far as I know, I’m not one of the red numbers you see on the news. I don’t know if I’m among the cases making my tiny township, just outside of Pittsburgh, a little darker blue by the day.
I’m in a grey area in between, one of thousands in this same boat, and it seems there are two main reasons why we’re here:
- The issues with testing go far beyond having access to a test. For those able to get one, the swab tests used in a majority of testing centers are not FDA approved, inconsistently administered, and very time-sensitive, producing an astounding number of false-negative results for highly symptomatic patients.
- There’s a widespread perception, and expectation, that COVID-19 is just a two-week illness. Many people have been ill for a month or more. This has led doctors, employers, and others to approach our lingering symptoms, some of which are debilitating, as a mystery.
Together, these situations have worked effectively to hide a large part of what’s going on with this disease.
It’s been a full seven weeks now, and on paper, I have “febrile illness with viral respiratory infection,” which means I have a virus causing fever, cough, and shortness of breath.
How does this happen, and how does it feel? Here’s my story.
Feeling “Off”
I first noticed it the weekend of Leap Day. I couldn’t think clearly, and below my skin was a strange vibrating sensation. By the following weekend, the sensation had intensified. Small stories were starting to pop up about a handful of cases that looked to be the same virus devastating China and Italy. But they said it was nowhere around here. I decided to stay at home anyway yet felt bad about missing out on get-togethers due to “general malaise.”
Onset of Symptoms
At first it was a sore throat, then it was a cough; my voice was hoarse, and soon I had a fever. Within three days I was staying in bed, missing work. I scheduled a video appointment with a doctor through the healthcare app on my phone. I described everything the best I could — she assumed I had the flu and prescribed Tamiflu and prednisone.
I diligently took the pills. They gave me creepy nightmares but no relief from symptoms. I got in touch with my regular doctor, who quickly acknowledged what I was experiencing and suggested that I get tested for COVID-19. I was relieved that it had seemed so easy.
I had no idea what was coming next.
Swab Testing
On the day the doctor ordered mine, coronavirus tests were just starting to be administered in the Pittsburgh area. We have two major (and competing) healthcare systems — The Big Purple one had rolled out limited testing on Tuesday, March 17, and The Big Green one, which accepts the kind of insurance I have, started giving them two days later on March 19.
My test was scheduled for the first appointment of the day on March 20 — my ninth day of symptoms and the hospital’s second day giving tests.
I survived a shaky drive to a collection site then waited in my car, coughing, in tears, and preparing myself for the inevitable (but necessary) discomfort of getting a swab test. I’d seen the cross-section images on the web. A long swab is inserted through your nostril and into the top of your throat. Once there, it needs to be “manipulated” — wiggled around, basically — for 10 or more seconds.
This isn’t what happened, though.
I rolled down my window and was handed two tissues and an information sheet. I was told to completely blow my nose with tissue #1. The tech told me he needed to insert the swab and hold it for four (4) seconds in both nostrils. Then I was to use tissue #2.
The swab went in about an inch, and including the nose-blowing, I was driving away in less than a minute. I was promised results within a week.
Shortness of Breath and Emergency Care
Shortness of breath (with its sadly appropriate acronym, SoB) doesn’t feel like you think it will. It’s not like that familiar breathlessness after a good workout or hearty laugh.
On day 14 of my symptoms, I quickly went through several stages of SoB. I first noticed myself pausing when walking between rooms and stopping mid-way up a short flight of steps. When talking, I was pausing to breathe after each sentence. Then, I needed to stop after every word. My nose wasn’t plugged so I could get some air in, but the air seemed inadequate and thin, like my airways had been reduced to the width of a cocktail straw.
Deeper breaths through my mouth sent me into a coughing fit. After finding just the right angle to breathe and fall asleep, I woke up with a start, gasping for breath and completely soaked in sweat. I felt like someone had been choking me. My clothes, sheets, and pillow looked like I’d been doused with a 2-quart pan of water.
At the time, we’d all been warned on the news to not “just show up” at a hospital due to fear of spreading the virus and overcrowding. So I spent the next hour asking a nurse hotline, a 911 operator, a COVID hotline, a hospital’s ER nurse, that nurse’s supervisor, my friend who’s a nurse in SC, and finally, my doctor’s answering service. My doc called back immediately and said I needed emergency attention. So I headed to the ER.
(Thinking back, I should have gotten in the car right away. I wasn’t afraid to drive. I was terrified of going back to sleep and never waking up. I was also very afraid of being turned away if I didn’t have “permission” to be at a hospital. If you ever feel you need urgent medical attention, EVER, just get to the ER. Call 911 if you cannot get yourself there.)
The ER I went to was empty. I’d expected a scene out of M*A*S*H, but I was the only patient there. I explained what was going on. I told them I’d had a COVID-19 test but did not know the results.
They took all the precautions you see on TV. They took my vitals and immediately started an IV. The nurse commented that I was dehydrated. I told her I was drinking about 5 L of water a day, but she said fever burns it off faster than you can take it in. They did a chest X-ray with a portable machine and took a bunch of blood. My X-ray was clear and blood unremarkable, so by dawn I shuffled out with a prescription for an albuterol inhaler and cough syrup with codeine.
Mixed Results
My COVID-19 test results didn’t come in a week like promised. My swab had been used to test for Flu A and B as well as RSV, and those results had shown up in my chart less than 24 hours later. On Monday, March 30, I got the call from a curt nurse who had the news that I’d tested negative. What?
This feeling is hard to explain. On the one hand, you’ve just been told that a test says you do not have the deadly disease causing a global pandemic. On the other hand, you have all the symptoms of the deadly disease causing the global pandemic and needed emergency care to address them.
I expressed my surprise to the nurse, who asked why I felt this way. I explained that I was still very, very sick. And now, I was worried.
(All information about receiving this test, or its result, was absent from my medical record until the very end of April. The entry says my swab was processed at a lab in North Carolina. The results include a statement that the test I received is not FDA cleared or approved. A PDF on the lab’s website says that the tests’s accuracy depends on proper collection, correct packaging, and prompt processing. My single swab was used for three other tests and then was in transit for 10 days.)
I started taking my temperature on March 13, the day I had that first virtual doctor’s appointment. Since then, my daily temp had held steady around 99.5, sometimes peaking at 100.0, but never dropping below 99.0. I was constantly fatigued. I’d missed six days of work after we all started working from home on March 16. The cough medicine helped me get through the day, but the inhaler didn’t seem to do anything.
I called my doctor back two days after getting the results and spoke to a sympathetic nurse who seemed familiar with my info. “You’re one of those — your test was negative, right? Most of the folks who tested positive don’t have symptoms, but we’re getting a lot of calls from people who tested negative.” She set up an appointment.
I’ve been seeing my PCP for over 20 years, since my first months in Pittsburgh. She’s great; a bit alarmist at times, but that generally works for me. She likes to rule things out. When we spoke on the video appointment, she said she was very surprised by my results and “would have put money on it being positive.” Retesting, however, was not recommended. She wanted to try an antibiotic to kill my persistent infection, even though everything I was showing made it appear to be viral.
I took cefuroxime axetil pills twice a day for 10 days. Instead of relief, I got diarrhea. My body aches, persistent low-grade headache, sore throat, and cough didn’t go away, and neither did the fever.
The next step was blood work to rule out rheumatoid arthritis, a thyroid problem, and markers of other autoimmune disorders. I had the blood draw done but the walk-in lab tech wasn’t happy with me for coming in with a fever. I wore a mask and gloves.
When these tests were clear, the next step was meeting with an infectious disease specialist. By that time I’d had a fever for a month, and no matter the cause, that’s not OK.
Support and Validation
I’ve spent a lot of time Googling stuff. I know this isn’t uncommon when you’ve got medical questions, but these days it’s hard to get results other than COVID-19 when the symptoms you’re typing in are the symptoms of COVID-19. These are my symptoms with one exception: This has been going on now for more than 7 weeks.
The weekend before my specialist’s appointment, I commented on a Facebook post from a friend in NYC with COVID-19. Her story sounded just like mine. She added me to a COVID-19 support group.*
Within minutes, I knew I wasn’t alone.
Post after post was a story just like mine. Their experience mirrors mine so closely that I’m often shocked I did not write it. Extreme fatigue. Labored breathing. Trouble sleeping. Daily fevers between 99.0–100.0. Strange smells of cigarette smoke, even when all other scents are dulled. A night in the ER. Clear chest X-rays. Back aches. Sore throat. Brain fog.
Many group members have shown symptoms since mid-March, and some as far back as January.
The infectious disease specialist I spoke to on April 14 asked pointed questions about my swab test. She wanted to know every detail — when they did it, how long the swab was in there, and whether or not I’d had the sensation of it going pretty far into my nose. I explained it just as I remembered.
She explained that it sounded like the test wasn’t done correctly and was likely a false negative. She also explained that the test I got can only detect the virus for two days before symptoms develop and up to seven days after — I’d been tested on day 9 — and even if it did go far enough up my nose, it probably couldn’t have detected the virus anyway.
She ordered more blood work, the kind that can detect the rarest of viral illnesses. She also ordered me to stay in home isolation until my symptoms of COVID-19 are gone.
I don’t know if she added me to a tally or not.
So, here I am. I’m at home. Mostly in bed. My temperature is higher today, nearly 100.0, and the dull headache I have reminds me of the altitude sickness I’ve had in the mountains out west. I smelled a lit cigarette so clearly last night that I turned my head toward the smell— but my cats don’t smoke.
I’ve been working from home like the rest of us who are lucky enough to do so, but my days are spent in bed. I’ve lost about 10 pounds. My kids are here part of the week; they’re fine, but I’m watching them closely.
The Facebook support group is an endless source of comfort — truly a godsend. The members have confirmed tests or suspected false negatives, and many were never tested for several different reasons. Some weren’t tested because they were ordered to isolate, and others never could get a test because of availability, transportation, general access, rules to test admitted hospital patients only, or a doctor’s flat-out refusal. We come from all over the world. No matter how we got there, we have this illness in common. And we are going through it together.
What We Know
It seems the one thing everybody knows for sure about the spread of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) is that they don’t know much and are learning a little more every day.
Last weekend, the CDC added several additional symptoms to their official list. Thing is, these symptoms are not new — patients have had them for months — but they are now just being officially recognized. Before I was tested, the local testing criteria for a fever dropped from 100.3, to 100.0, to 99.5 — all over the course of just three days.
It’s not truly known how long a person is contagious. Even less is known about how long the symptoms can last. Antibody testing is not widely available and reportedly less reliable than the swab tests.
Many COVID-19 support group members have some good days — even a week or two — then experience a resurgence. There are no data yet about whether or not this is a long-term disease or what lasting effects it may have on the body. We know that some viruses can stay with you for a lifetime, and we know that they can mutate and change.
Right now I’m not actively afraid, but I’m also not focused on what my life was like before this. Life has changed for all of us and I don’t have the energy to worry about that right now. I’m thankful to be home, and I’m thankful for support.
(I’m not sure what will happen when they eventually lift local restrictions, though. I am not leaving the house at all now, and I won’t be able to work in a normal office environment if I still have any of these symptoms. With the persistent fatigue, I haven’t yet made it through a full 40-hour workweek since I got sick.)
I also don’t know how I got it and probably never will.
What We Can Do
I know you hear this all the time, but please, please, protect yourselves and your family. Protect your community. We all have to take this very seriously.
We know this can kill you. Many of us have lost friends and family. If we haven’t, we all know someone who has.
People need to understand that the “mild-to-moderate” cases are not simple, and not at all like the flu. The symptoms will knock you out. If you get it, you can expect to be out of commission for much longer than two weeks. You will likely need emergency care at some point. And you may not know what to do.
As you watch the numbers on the news, remember that they don’t tell the whole story. The number of cases reported each day depend on the number of people they’re testing, how those people are being tested, and whether or not they’re getting the test at the right time. There are no tallies of the people who are suffering at home. They do not count the number of symptomatic people denied testing, nor do they report the number of probable false negatives.
If you are sick with the symptoms of COVID-19 and get a negative test, question it. You know your body. You’re not going crazy. Think of it this way: If a test says that virus was not detected, you are still sick. And when you’re sick, it’s easier to spread something, and catch something. Above all, stay home and stay safe.
Focus on taking care of yourself, and do not hesitate to seek out emergency care if feel like something is very wrong or you have trouble breathing. You may hesitate and think it’s not “bad enough” yet — but remember that your symptoms can escalate quickly.
I think I’ll be OK. But I still worry. I think most of the rest of us will be OK, too. But for now, we need to do everything in our power to support each other, avoid spreading this disease, and spread awareness whenever possible.
Take care. Stay well. Thanks for reading.
*A Yahoo! Life article was published on April 30, 2020, about our awesome support group and I gave an interview. You can see it here.
