As someone who lives with a suppressed immune system, I want to share the timeline of my recent COVID19-like illness to educate and to equip you should you find your symptoms being dismissed as mild to moderate and instructed to ride it out at home unless you get worse.
Quite candidly, unless we, the medically vulnerable, share the specifics of our cases from diagnosis and treatment through to recovery, our lived experience[s] are not likely to become part of the COVID-19 scientific literature. We will simply continue to hear the blanket statement that the elderly and those with underlying health conditions are at increased risk of contracting the coronavirus AND encountering potentially life-threatening complications should they develop full blown COVID-19.
This virus and an individual’s immune response to it can turn on a dime, and we must be vigilant if we are medically advised to watch, wait, and recovery at home. If, however, our symptoms worsen and we must return for more thorough evaluation, we must be prepared to advocate for ourselves.
Atypical patients often present with atypical symptoms and follow an atypical clinical course; you’ve got the most skin in this ‘game’, so get comfortable with being bold in advocating on your own behalf.
So, here’s the timeline of my COVID19-like Illness:
[Of note, I did have an isolated temperature of 100.2F on 3/17 that I didn’t report]
• Day 1 (3/24): I awoke with a sore [scratchy] throat something akin to a post nasal drip sore throat except that it got worse throughout the morning. Providentially, I had a TeleHealth appointment with my trauma psychiatrist who went to medical school with my internist at noon that day. At the end of our appointment, I mentioned my throat to her and asked her if she thought I should give my internist, Dr. Pepper, a head’s up call. She said, “absolutely.”
By that time, my temperature was *100F which met the criteria for calling my internist. Thankfully, my blood pressure was stable, I had no respiratory symptoms [no cough, no shortness of breath, no difficulty breathing], and my oxygen saturation was 99%.
[*Note: My temperature threshold for testing whether for strep, Influenza Type A/Type B, or the coronavirus, is lower than the threshold for immune competent individuals. This is because my immune system may or may not spike a fever in response to a viral, bacterial, or fungal infection. Thus, Dr. Pepper never takes comfort in my reporting the absence of fever.]
If you live with immune suppression or an autoimmune illness, it is imperative that you contact your healthcare provider to find out at what temperature you should call and ask for next step directions.
So, I called Dr. Pepper to report my symptoms and to discuss next steps. She faxed an order for testing to the closest site, and I was swabbed for the coronavirus by day’s end. At this point, I felt well enough to drive myself to be swabbed, and I certainly didn’t want to expose my husband or our son.
The testing site gave me the CDC guidelines on how to self-isolate within my household and instructed me to do so until results were available. Upon returning home, I went directly to our guest room which I had prepared/stocked before I left to get swabbed.
• Day 2-8 (3/25-3/31): My fever persisted although my sore throat resolved, and strangely, I did not experience any respiratory symptoms. I did have the occasional wheeze which was well managed with twice daily Advair. My oxygen saturation never dipped below 95%.
• Day 3 (3/26): I lost my sense of taste; my sense of smell remained in tact. I experienced some minor nausea with one episode of vomiting; no diarrhea.
• Day 4 (3/27): Symptoms continued as detailed above, and the lab called to report a negative COVID-19 result. I was allowed out of the guest room, but I was Dr. Pepper cautioned me that up to 30% or more of COVID negatives are false negatives. Thus I needed to remain vigilant in self-assessing and stay in daily contact with her.
*For more on negative results, click here. Also, Dr. Birx would be disappointed if I didn’t remind of all us that a negative result is negative at THAT moment in time. If a swab is taken the next day, it could very well be positive.
• Day 5-9 (3/28-4/1): Fever persisted through 4/1 with absolutely no difficulty breathing. My oxygen saturation was holding at 97 to 99%. These days were marked by significant fatigue and a dull, constant headache. I was asleep far more than I was awake most days.
• Day 10 (4/2): Headache finally resolved after an 18 hour ‘nap’ AND I woke up with a little bit of energy.
• Day 11 (4/3): THIS was the 1st day that I felt a tad bit like myself. Though I was still quite fatigued, I was out of bed, showered, and dressed to take on the day [in PJs]. I think I may have unloaded the dishwater and prepped the skirt steak for dinner that night: maybe?!
• Day 12 (4/4): Tired, but felt good enough to go out for a short drive; I had to get out of the house even if I had to stay in the car. Trust me; I’ve taken stir crazy to all time heights.
• Day 13 (4/5): Live-streamed Palm Sunday services, then rested on and off throughout the day.
• Day 14 (4/6): Woke up and gave thanks that it was Spring Break; continued to feel better doing a little more around the house, maybe 2 loads of laundry [washed, dried, and left unfolded].
• Day 15-16 (4/7-4/8): Again, I seemed to be gaining strength each day, so I went into stamina building mode. Illness always takes a toll on my stamina, and I have to be intentional about regaining it. I also have a tendency like most of us to take on too much too soon. This often results in extending the number of days I am down, so to speak.
• Day 17-23 (4/9-today): By the evening hours, the low grade temperatures that resolved on 4/1 returned [99.2-99.6F], and I was exhausted once again with body aches, a junky sounding cough, and intermittent wheezing. Still, no respiratory distress. Wheezing was managed with my Albuterol rescue inhaler and twice daily dosing of Advair; nebulized breathing treatments never became necessary.
In corresponding with Amy Boyle of 11 Magnolia Lane about her recent experience with presumed COVID19 which can be found here, I asked if she would be willing to share the timeline of her illness with me, including the symptoms she experienced and when. She, of course, agreed.
Our symptoms are remarkably similar, yet not entirely consistent with the typical COVID19 constellation of symptoms [fever, sore throat, cough +/- respiratory distress]. As I read through her timeline, she described a “hot, tingling sunburn feeling all over her body” on Day 2 that triggered my memory.
I distinctly remembered attempting to describe THAT feeling to my husband [seems simple enough, right?!] because that was the symptom that tipped me off that this illness was different from any other [illnesses] I’ve experienced. It is also a symptom that I didn’t pay much attention to as it was easy to chalk it up to being related to my fevers; however, I could not escape the fact that it was different. It felt different, and it was present even when the fevers were not.
Is this symptom significant?
I have no idea, but it is worthy of noting even if we are the only 2 individuals with pre-existing immune issues to have encountered it within the context of COVID19-like illnesses. I have spoken with others who have told me that they felt an “off” that they can’t articulate, a different kind of sick from past illnesses.
Presently, I am starting out my days feeling much stronger, and my stamina is much improved. My bedtime is earlier than usual, and I am sleeping later in the mornings. For now, I am symptoms free, and oh, how I pray that will continue.
I have had a lot of time to think, read, and research over the last month, and it is the intention of my heart to continue to share with you the questions I am asking about COVID19, a vaccine, effective therapeutics, and the implications for my daily life and the daily life of my family as we begin this process of re-entering our community.
But, those topics will have to wait for future posts; I am including A LOT of links for those of you at increased risk who are just as curious, if not fascinated, and as altogether horrified as I am by this virus.
Inasmuch as it depends on you, my friends, stay well!
COVID19 and Immunosuppression Literature and Media Reports:
Disclaimer: What you are about to read is pure speculation on my part based upon my knowledge of my own underlying conditions, my unique risk factors, and my review of the COVID19 scientific literature and case studies currently available. It is not intended to serve as medical advice nor a substitute for medical advice in any way, shape, or form. If you have questions regarding your health, wellbeing, or symptoms you are experiencing, call your primary care provider sooner rather than later.