Symptoms, Swabs, and False Negatives: an Update

Symptoms, swabs, and false negatives led to my extroverted self being quarantined in our guest room for a few too many days at the end of March. On Tuesday 3/24, I developed a scratchy throat followed in short order by a temperature of 100.2F which scored me a ticket to get swabbed for COVID19. Three days later, the lab called to report a COVID negative result.

That being said, here’s the rest of the story…

It’s important to note that in medicine, we use diagnostic tests to confirm our diagnosis which is based upon a thorough history and the clinical presentation [signs and symptoms] of the patient. Once a diagnosis has been confirmed, diagnostics coupled with clinical manifestations are used to guide interventions and to monitor progress.

In discussing the negative result with my internist, she cautioned me that given my symptoms, we needed to remain vigilant because 30% or more COVID19 results are false negatives meaning that you ACTUALLY have the virus despite a negative result. So, though I was permitted out of my room, I continued to keep my distance from my family “scrubbing in” for dinner [TV tables 6 feet apart, mind you] before returning to my room or office to read, rest, and hydrate.

Remember, negative or false negative, I was sick; we just weren’t sure what I had.

Like most childhood/AYA cancer survivors and heart transplant recipients, I fall into the medically vulnerable category because of multiple underlying conditions. Therefore, we were obligated to proceed as if I was COVID positive even though my swab came back negative.

My lungs will forever be my Achilles’ heel, my point of greatest vulnerability. I live with 25% of the lung function of a normal counterpart as well as restrictive lung disease that makes it impossible for my lungs to fully expand. If you consider my respiratory status within the context of the highly contagious nature of this virus, the images and data coming out of Italy, Europe, and New York the week of 3/23 left, and the mortality rate of those with underlying conditions, I think it’s understandable that I was concerned, perhaps even shaken within.

To be perfectly candid, I was internally undone.

Thankfully, I have an internist who is second to none in the metro Atlanta area, and we have a collaborative approach to my healthcare sharing the burden of every decision during times of wellness and not-so-wellness. We have great respect for one another and what each of us brings to the table of my care: strengths, vulnerabilities, limits, and blindspots.

Most importantly, she knows that information and a plan will ground me when uncertainty and the unknown inject themselves into my life. This knowledge of me makes her the calm to my storms. She’s most definitely one of my guardian angels, an earth angel who has been given charge concerning me. Y’all, she is the absolute best!

After learning about the percentage of false negatives, I had 3 questions for her.

  1. Is it reasonable to think that I could ride this infection out as an outpatient?
  2. Are there [still] ICU beds available?
  3. Are there [still] ventilators available?

She replied: yes, yes, and yes while reminding me that 80% of all patients with COVID19 fully recover without intensive support, and there was no reason I could not be in that 80%.

[Mindset: a little thing that packs a punch. ~paraphrase of Winston Churchill]

And so, together, we developed a plan.

  1. Continue all current medications substituting Tylenol for Motrin if fevers were intolerable
  2. Monitor temperature, oxygen saturation, and blood pressure periodically throughout the day
  3. Pay close attention for ever so subtle changes in respiratory status; I also listened to my lung fields anteriorly for good measure and because it brought meaningful data to our daily updates
  4. Touch base once, if not twice daily via text or phone
  5. If necessary, admit to my specified hospital of choice for inpatient management

As you [hopefully] know by now, the symptoms of COVID are fever, sore throat, and a dry cough +/- shortness of breath and/or respiratory distress depending on when you seek care.

To my immune compromised compadres, I want to remind you that you may or may not develop a fever because you are immune suppressed. Please, please, please discuss temperature and when to call with your transplant team or your PCP!

*I must also tell you that we [my internist and me] have successfully managed almost 100% of my illnesses on an outpatient basis since my heart transplant in part because I am a nurse practitioner. I can clinically assess myself at home. Thus, we know when I am headed into deep waters and NEED the reinforcements of an inpatient stay.

I guess my point in sharing my professional background with you is a ‘do not try this at home’ caveat to everyone, especially the vulnerables among us.

Should anyone develop any constellation of these symptoms, ALWAYS call your PCP for direction regarding next steps, sooner rather than later. This is not a common cold. No, this is a virus that plays for keeps.

So, the $64K question remains, did I have the virus or not?!

Answer: we don’t know, and we won’t know until the antibody testing is made available and scaled up in the not too distant future.

Either way, it doesn’t change my daily life right now. I am in the trenches with you doing my part, my civic duty to slow the spread, protect my community, and hopefully, flatten the curve by staying at home.

Be well, my friends!

 

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