Due to my own experience with having the virus, I know how hard it is to get a COVID-19 test. I want to share my experience, so people are aware of not only how bad the situation in Texas is, but also how we all should be expecting an influx of new cases in the coming weeks.
It started with the baby
On Tuesday, March 10, I woke up with a sore throat. No fever, no other symptom, just a sore throat. On the same day, we notice that our 8-month-old baby also seemed very congested. She’s a daycare baby, so we expect these types of things during her first year, but, she was also 2 months premature and weighed only 3 lbs, 7 oz at birth. So, we kept an eye on her.
As the week went on, my sore throat didn’t go away, neither did the baby’s congestion. In fact, her congestion got worse. When we woke up on the morning of Saturday, March 14, the baby’s congestion had turned into wheezing and panting. It appeared as if she was struggling to breathe. So, we immediately headed over to Cooks Children’s Hospital in Fort Worth.
When we got there, she didn’t have a fever. In fact, she never had a fever during this whole time. The doctor ran a few tests on her and said that she had a virus. What virus? There’s no telling… The doctor said, “She possibly has coronavirus, but she doesn’t meet CDC guidelines for testing.”
All of the children are infected
The doctor then told me that in her professional medical opinion, at this point she thinks all the children have it. She reassured me not to worry because children typically do well with this virus. Then she gave me the phone number for the CDC Tarrant County Hotline, said feel free to call, but don’t count on getting any tests.
THE NEXT THING SHE TOLD ME ABSOLUTELY FLOORED ME. SHE SAID THEY HAVE CHILDREN IN THE ICU ON HIGH-FLOW OXYGEN, WHO THEY STILL COULDN’T GET TESTS FOR BECAUSE THEY DON’T MEET THE CDC GUIDELINES. THINK ABOUT THAT FOR A MOMENT.
That was it, they sent us home with some decongestant nose drops and said come back to the hospital if she gets any worse. She didn’t get worse, but Sunday, March 15, I woke up with a fever.
The following week was all downhill
Over the next few days, my fever hovered around 100.0, not getting much higher than that. Out of coincidence, I had my regular check-up scheduled with my doctor on Tuesday the 17th. But, with everyone saying that this virus was bad for elderly people, I decided to cancel my appointment. My doctor is 89 years old and didn’t want to expose him if I happened to have it.
I called my doctor’s office that Monday afternoon and asked the front desk about whether they would have to access to testing since they were part of the Baylor, Scott, and White Hospital. She told me that they were trying to get testing set up, but I needed to download an app and check back later in the week because they didn’t quite have testing ready yet.
The CDC Hotline
That’s when I decided to call the CDC hotline number the doctor at Cooks gave me. The woman on the other line seemed overwhelmed with the number of calls they had coming in, but the only way I can describe her tone and demeanor is annoyed.
I told her what happened with the baby at Cooks, and how I was developing symptoms and told her the doctor at Cooks said to call and inquire about testing.
She asked, “Have I or the baby been in contact with anyone that had already tested positive for coronavirus.” I told her, not that I was aware of. Her next statement was the epitome of stupid. She said, “Well, it’s impossible for you to contract coronavirus unless you had contact with someone who already tested positive.”
To which I replied, “What about all the people who are positive and haven’t had access to testing?” She didn’t answer, instead, she told me I should go and visit my ER, despite, at this point (Monday the 16th), the news was repeating over and over again to not go to the ER unless it was an absolute emergency.
So, I decided to try and rest and hoped I felt better the next day. I didn’t, on Tuesday the 17th I felt worse, still had a fever, and my back was hurting me anytime I took a deep breath.
I couldn’t even get a telemedicine appointment
On Tuesday, I checked the app my doctor’s office told me about for testing, there were no updates. So, I decided to try a telemedicine appointment offered by Medical City Arlington, (my typical hospital of choice).
The entire experience was frustrating and ridiculous. After signing up for an account, they said they would text me when a provider was ready. I waited almost an hour for the text, and then logged on.
There was a notation that said, waits are usually no more than 30 minutes and said how many people were in front of me. First, there were 3 people in front of me, then 2, then 1, then 0, and then BACK to 3 again. I watched it do this countdown again and again for well over an hour, to be cycled through 3, 2, 1, 0, 3, 2, 1, 0. I finally gave up.
They texted me again about 45 minutes later saying the provider was ready to meet with me. So, I logged on again. The same thing happened, I cycled through a waiting queue again and again. And once more I waited nearly an hour before I gave up. I spent over 3 hours total trying to talk to a telemedicine provider, and I never did.
I’m not so sure about TeleMedicine
Later that evening I got an email from a Nurse Practitioner stating she was sorry she couldn’t reach me, she’d like to see me in her office, here is a note for your job for the rest of the week, and don’t worry we won’t charge you for our televisit. (Gee, thanks.)
My patience was pretty thin at this point. So, I thought again, I’ll get some rest and hopefully, I’ll feel better in the morning.
But I didn’t feel better, and on Wednesday the 18th I was starting to have a hard time breathing and began coughing a lot. A dry cough. So I finally said, screw it and headed up to the ER.
The scene at the hospital was surreal
I went to Medical City Arlington at about 8 pm in the evening that day. They had a man posted at the door, stopping everyone who came in. If you were there for fever, coughing, shortness of breath, or other related respiratory issues, you got a yellow bracelet. Everyone else got a green bracelet.
Half of the people there were wearing yellow bracelets. Luckily the ER wasn’t too crowded, around 15 people. But, at this point, they hadn’t shut the hospital down from visitors and any person coming into the hospital had to pass through the waiting room.
After waiting about 15 minutes a man came out and said my name, along with 3 others. The 4 of us, all wearing the masks the hospital gave us lined up and he took us all back to get x-rays, together.
I was first, so I went to the x-ray room while the other 3 were instructed to wait outside. And after my x-rays were taken, he told me to go back to the waiting room. As I did, I passed by several elderly people who were laying in hospital beds in the hallway.
Now that we all know how extremely contagious COVID-19 is, we all know how bad this incident was, grouping these sick people together without knowing what they have, and parading them past old people in the hallways.
No flu or strep
After they got me back into a room, they tested me for the flu and strep. Both negative.
Then the doctor came in and said my x-ray showed I have pneumonia. He also said that it was likely I had the coronavirus, at this point he thinks just about everyone was infected. And even though I had nearly every symptom, he couldn’t test me, because they didn’t have any tests. They gave me antibiotics and cough medicine and then sent me on my way.
Over the next two days, I felt terrible. I took the meds as prescribed, but my fever wasn’t going down and my shortness of breath was getting worse. On top of that, I was getting angrier that the baby and I couldn’t get tested. Not like it would have changed anything, but it made me feel as if our health wasn’t important.
I thought I would have another change for a test
Friday, I heard through the grapevine of Sinai Urgent Care Center in North Dallas was doing testing. I called them that morning, I told the girl everything that we had been through at that point. She said that both the baby and I would qualify for testing and scheduled us for an appointment that afternoon.
About an hour before the appointment was supposed to take place, another girl called me back to cancel the appointment because they ran out of tests. Then she asked me why did I want to get tested, and I explained the situation to her once more. She said, since I had already been diagnosed with pneumonia, that I was no longer qualified to take the test.
Finally, someone ordered a test
After the canceled urgent care appointment, I called my regular doctor’s office again that afternoon, to tell him I was at the ER, had pneumonia, still had a fever, and still felt terrible. As it turns out, he was out social distancing. But he had a PA call me back.
She was nice and empathetic and said that Baylor, Scott, and White was now doing drive through testing. She was putting in an order for me to get tested, but the testing site wasn’t going to be open until Monday, March 23rd. It was several more days away, but I had already been sick for nearly two weeks, so I said OK.
Over the weekend, while waiting on my Monday test to come, my fever finally did break. 7 days of a fever total. It was one of the longest 7 days of my life. And even though my fever was gone, my shortness of breath was not. I couldn’t walk from the couch to the kitchen without being so winded that I could barely speak.
Then, it got worse.
Sunday night, it was hard to breathe and my hands, feet, and tongue were all going numb. I was getting worried that I wasn’t getting sufficient oxygen. I had to go to hospital again. My husband had to stay with the kids, and I was so dizzy, no way I could have driven myself. So, we called an ambulance.
The EMTs showed up in full PPE, mask, gown, gloves, the works. On our way up to Medical City Arlington, I told them of everything I had been through that last week. How the baby had a virus, and what the Cooks doctor told me, as well as what the first doctor at MCA said to me, about how it was possible I had coronavirus.
Have you ever seen fear in someone’s eyes?
When we made it to the hospital the EMTs told the nurse how the baby and I had both been to different hospitals that week, and both doctors said COVID-19 was possible, but in both situations, we didn’t have tests, because there were none or we weren’t qualified.
The nurse, who was also covered in PPE, looked back and forth between the two EMTs. I could only see her eyes under her plastic-face cover, but I will never forget the look in her eyes as they told her the information. Fear. Undoubtedly, on the front lines, it was a story they were hearing again and again. Knowing that this was only the beginning and that people were being told they may have coronavirus, but couldn’t be tested. We still haven’t even hit the peak, yet. I can’t even fathom what those nurses are going through now.
They rolled me back to an isolation room and put me through the same blood tests and x-rays. but once again, they couldn’t test me for coronavirus, because they had no tests.
I was OK!
As it turned out, my oxygen, heart rate, and blood pressure were all fine. Because I was coughing so much, it was almost like I was hyperventilating, which was a contributing factor in the numbness I was feeling. The other contributing factor was I was apparently low on potassium. What a relief. This time, when they sent me home they gave me steroids for my lungs and an inhaler.
The next day, Monday, March 23rd, 13 days after my first symptoms showed up, the finally called me to come and take my COVID test. I told the nurse when she called that I still felt pretty bad, but I no longer have a fever. She said it didn’t matter, the test was ordered and I should come to take it.
I didn’t know it was going to be an IQ test
When I pulled up to the testing site and they verified who I was, a nurse came out to my car. She told me to sit on my hands. I didn’t get why at first, but if you haven’t heard about how this test is taken, just check out this graphic:
Yes, she stuck that thing so far up my nose, I was certain I would have a nose bleed, (I didn’t). It for sure hurt and they went up both sides.
Then, that was all. She said my doctor would call me in a few days and have a nice day.
Finally, an answer…not really
The results came back, “Not Detected.” Negative results do not preclude SARS-CoV-2 infections. Optimum specimen types and timing for peak viral levels during infection have not been determined. Blah, blah, blah. What does all of this mean, anyway?
A nurse friend of mine said that in her hospital they were only testing people when they have fevers because if they did not have a fever, they were getting around 60% false negatives.
I looked around for more information, as this article from WaPo or this Podcast with Dr. Fauci, which points out that there have been false negatives, and it mostly depends on what your viral load is when you take the test.
My test came, 13 days after my first symptoms, two hospital visits later, post-pneumonia diagnosis, and after I was fever-free for two days.
What was my illness?
So, did I have COVID-19? Did the baby? Does my husband have it now, (he’s been coughing and running a fever for several days)? I don’t think we’ll ever know the answer to that. Not unless I get sick again and get a positive diagnosis.
I never had pneumonia before, I don’t have asthma or any other lung or breathing condition. The illness I had completely knocked me on my ass for two weeks. I was miserable. I am still coughing, I still don’t feel completely recovered.
All of the symptoms were there, cough, fever, shortness of breath, and I developed pneumonia.
That sickness was unlike any upper respiratory illness I ever had before. While all of this was going on, there were 4 other people at my job who were also out with some type of respiratory illness. Some of them were very sick and were also out for two weeks, as I was. Only one tested positive for the flu. The others had no diagnosis.
If I didn’t have coronavirus, then fate pulled a cruel trick on me giving me the terrible case of pneumonia during a global pandemic when the biggest sign of the pandemic virus was pneumonia. What are the odds?