At this point it is no secret that I had COVID-19 earlier this year. I became sick initially in late March/early April. It is just so hard to believe now seeing the pumpkins and scarecrows on my daily walks. I was exhausted all the time, coughing around the clock, and was having trouble catching my breath even while sitting down. My body ached and my chest really hurt. My husband helped me walk to and from the bathroom because of how dizzy I would get walking around the house. I was the first person my doctor recommended for a COVID test in April.
That was six weeks after my symptom onset.
My doctor loaded me up with an inhaler and spacer chamber (to help me better get the inhaled medicine if I started coughing while using it), a course of prednisone to open my lungs and airway, and several cough suppressants, I was not able to get a foothold in feeling better no matter which remedy we threw at it. Every time I thought I was starting to turn a corner, some symptom would pop back up again like the most sadistic game of whack-a-mole I have ever seen.
That said, my symptoms began to abate a couple weeks after my first negative COVID test on April 25th. Mid-May I was starting to feel up to walking around the house without help, was back to making my own meals, and generally had a little more energy. My doctor had me do a repeat COVID test, which also came back negative. I did not know it at the time, but I was given the less sensitive antigen swab tests, and this is the basis for part of the theory of why I did not test positive until much later.
In the last week of May, I was starting to get really dizzy again. It felt like my brain was swimming in pea soup and I was struggling to hold onto one thought for more than five seconds. On May 27th, I became so dizzy and was having so much difficulty getting in normal breaths that I fell in our living room. My husband put our pulse oximeter (this reads the amount of oxygen in your blood and clips onto your pointer finger) straight on my finger as he described later that my mouth and face had started to look "blueish." At any point in time, a person's oxygen saturation level should be between 95% and 99%. That indicates you are getting enough oxygen to supply your body. For each percentage point lower than that there is an exponential, rather than linear, effect on the body. In other words an oxygen reading of 93% is not a little worse than 95%--it can feel more than 2x more difficult to breathe. When Alex checked my level I was hovering around 88%. This was quickly a medical emergency and he called the life squad.
From there, I spent five days in the hospital on oxygen. There is a separate post detailing my stay on the COVID ward, but here are the necessary points for this post: I had the first (of many) CT scans of my lungs. Both of my lungs were partially collapsed and had the "COVID look" of fluid building up in the lungs with "patchy ground glass." It's about as bad as it sounds. Essentially, a weird, but severe, presentation of pneumonia. I also had fractured two ribs in a couple places from the percussive coughing that had been going on for two months on and off and had torn part of my left abdominal muscle. Although I needed a lot of supplemental oxygen, I was able to receive it through a nasal cannula and never needed to be intubated. By the time I was able to leave the hospital on the last day of May, my vocal cords were also rebelling against the coughing and dry air from receiving oxygen so were totally torn up. In addition, my liver panel levels were not in a normal range when the hospital ran a metabolic panel on me. I was told that this was a part of the COVID constellation of symptoms that needed to continue to be watched.
Alex brought me home May 31st and I went back into a deep state of hibernation until early July as my cough began to remit and the dizziness once again abated. I had no voice due to the vocal cord injury, but slowly coaxed it back as breathing became less labored. I had been on prednisone for over 40 days at this point in time. As a type 1 diabetic, this meant tripling my daily insulin dose. I felt sick from prednisone all the time, but needed it to continue getting better. I gained forty pounds of "prednisone weight" and was asked at one doctor's office when I was due (as in, having a baby, due...thanks, man). Not only was I feeling physically at odds with myself, my mental health was cringeworthy to say the least.
As July went on, it really did become easier to breathe. I was able to come off off the prednisone and most of the supplemental medicines that I had been prescribed. I was cleared to walk outside, which did wonders for my mood.
Unfortunately, that all changed in the first week of August when I woke up in the middle of the night, drenched with sweat and found I had a fever of 103.6. As Alex and I tried to figure out what was going on, he saw the same blueish color and immediately brought me the pulse oximeter and my inhaler. My oxygen was around 91%. Not good--not necessarily a trip to the hospital if we could get it back up. He helped me to our couch and I took some tylenol right away. Ibuprofen is apparently NOT a good idea with COVID, as my doctor had already warned us. The fever reducer, inhaler, and cough medication seemed to do their job as my oxygen rose to 94%. I had been using the hospital spirometer (you know, that machine that makes the balls go up and down based on how long you can blow air through the tube?) every day since my release, not wanting me lungs to deflate further.
It was hell with broken ribs.
Later that morning, Alex brought me some diet Ginger Ale. I swallowed a little bit and immediately found myself grimacing. It tasted like soap. I had a completely altered sense of taste. I spent the next few days on the couch battling a renewed cough, extreme muscle aches, and a fever that did not break for 18 days. I was physically spent. Sleep was not restful. Food was not appetizing. In fact, there were next to no foods that would stay down and I began to lose weight faster than I had put it on. I had to plan my whole day around if I wanted to take a shower because it was so draining. I felt helpless.
Two weeks later, my symptoms began to resolve again, once more throwing me headfirst onto what felt like a yo-yo of constant fear between feeling like I was totally done and feeling like this time I might *actually* stay well. Alex and I forged ahead with plans for our new jobs and other life milestones, but in the back of my mind, I was still wondering, "What comes next?"
At the end of August, my PCP ordered a COVID antibody test since we had not gotten a positive on my previous two tests. All said and done to this point, I believe I have had nine COVID-19 tests. Lo and behold, I had the antibodies showing that my body had encountered, and fought, COVID-19. This news was incredibly bittersweet for me as it :
1) validated my experience thus far and
2) opened the door for "what-ifs" much wider.
With the positive antibody test I was able to sign up to donate my plasma to other COVID-19 patients who were in the hospital and needed plasma as a last-resort, live-saving treatment option. It made me feel like maybe it was worth it, if I could help even just one person with my arduous ordeal.
I ended up helping three.
I applied to become a public health investigator to be on the frontlines chasing down this insidious virus and assist in research efforts in my state.
To me, it seems that is the only way forward. Snag it, tag it, bag it, as a friend said to me.
Most of September passed uneventfully--I was cleared to start running and practicing yoga again. I got my license to teach zumba. I got the position working with a contact tracing unit and jumped headfirst into the wild world of epidemiology. It is challenging, but really rewarding.
This past weekend, I started to feel kind of run down again...my muscles were starting to ache, I had a low-grade fever...and then I lost my sense of taste. Again. One trip to urgent care confirmed what I was already thinking: I am a COVID-19 "long-hauler". Moreover, having flare ups of COVID symptoms is leading to secondary illnesses. In this case, swollen, inflamed tonsils and a bad sinus infection with some respiratory discomfort and one eye swollen shut. Yeah, COVID is weird and specializes in attacking disparate systems in the body you would never expect to go together.
Today is Monday and I am currently getting ready to start my workday with the Infectious Disease Team. They are looking to me for leadership and guidance. So I am sitting in my office, doing a Microsoft Teams meeting in business casual wearing a comfortable dress, even more comfortable leggings, and an ice pack pressed against my back because it is just so hot and the tylenol/naproxen combo is not working in time today.
I have always had more than my "fair share" of autoimmune illnesses. I have handled it with all the grit and gumption that I have. I am stronger than any disease that want to go three rounds with me and my happy-go-lucky immune system.
But.
This is a little different. There is JUST NOW emerging literature about this new club I never asked to join called the "long-haulers." It is defined as a subset of the population who have contracted COVID-19 and have two major components
1) A symptomatic case at the outset with at least (1) positive PCR or antibody test and
2) Flare ups of symptoms that occur at least (2) times in the span of the 6 months after the initial onset of illness.
As stated above...
Six flare ups. Seven months.
Many healthcare providers are still not aware that this group of the population exists. I am so grateful to my PCP for making ME aware that this was what I was experiencing. She never doubts or downplays my symptoms--which has at least steered the course of my illness, if not stopping it. Many long-hauler COVID patients have not been as fortunate to receive the care and attention that I am right now.
Through my family friends, I know of two other people my age who are in the "long hauler" category. One of whom is actually a doctor--like I said, not a fair disease by any stretch of the imagination. I hope that in the days and weeks to come the are more articles, more research, and more awareness for people like us who continue to fight, rinse, repeat indefinitely.
Even on my hardest days though, I feel so fortunate to have an arsenal of support in my family, friends, and healthcare providers. My whole team has been so understanding in the face of uncertainty, and supportive no matter the situation.
So as I straighten my spine, and pull my notes together for this meeting, I smile a genuine smile. The battle isn't over, but the troops are rallied. Any time now tylenol, do your thing.
Prepare, don't panic,
Allison
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