Long Covid and the Subsequent Roller Coaster Ride: Sara’s Story
I could never have predicted that 2020 would be the year my life changed and shifted in such a drastic way. 6 months prior to a journey I could have never expected I had happily just completed my Bachelors degree in Early Childhood Education. I picked up an unknown virus from work in late January 2020 while teaching preschool, and I simply never bounced back to my healthy self. Instead, I continued to decline rapidly over the next 4 1/2 years. A journey I never could have envisioned.
When I caught the unknown virus, I was then on leave from work for nearly a month with debilitating symptoms. Finally, when I did go back to work, I still struggled to get through a day of work without alarming symptoms.
I experienced a lot of gastrointestinal symptoms and would often defecate on myself at my work-place, which was beyond embarrassing. No matter how hard I tried to catch up, I was still behind. I found myself missing my chair when sitting down and falling onto the ground, raising my voice at students, and struggling to keep up physically and mentally with the day-to-day of life itself, let alone work.
I felt like I was walking through quicksand every waking moment. All of these things combined, along with a lack of support from my employer, led me to have a mental health episode while at work.
Looking back: I now realize this was likely due to my now diagnosed medical conditions (which I talk about later in depth) that caused anxiety like symptoms. I took a leave of absence from work while simultaneously attending an IOP program for my mental health. It did help because once I got away from work, I realized I was suffering from some pretty intense burnout. I ended up deciding not to go back to my teaching job as I didn't feel the health risk was worth it for me during a pandemic. Little did I know that I would spend the next 4 1/2 years dealing with Long Covid as a result of that initial "virus".
I felt like my body was falling apart all while everything I had worked so hard for was slowly fading off into the distance. While all of this was happening, I also somehow found myself dating a narcissist and addict when I, myself, was sober. In 2020, my symptoms started progressing more and more. I started experiencing over-all body pain in my joints and muscles, my GI symptoms progressed, debilitating migraines became more frequent where I would dry heave naked in the shower for hours on end, and I would have episodes where I would quite literally think and feel like I was having a heart attack.
This is when I started finding myself in and out of the ER, desperately trying to figure out what was happening to my body, with little to no help from any physician I would see. Usually, I would leave in tears after it was suggested that my symptoms were all "psychosomatic".
When my health started to continue to decline, I decided to leave that relationship to focus on my physical and mental health. 6 months later, he unexpectedly passed away. This truly had a large negative impact on my health, as I was forced to process trauma that I wasn't necessarily in the place to deal with. Then again, when are we ever in the right "place" to process trauma? We typically aren't in the right headspace.
Fast-forward to 2021 and my physical health continued to decline. Looking back, it hasn’t really stopped declining but, at the time, I had no idea why or what was happening to me. This is also the year that my inter-personal relationships really started to suffer. After seeing multiple rheumatologists and being treated very poorly, I finally saw a Rheumatologist at UC Davis who diagnosed me with me/cfs (myalgic Encephalomyelitis/chronic fatigue syndrome) and Fibromyalgia. This was a small piece of the puzzle but not nearly the whole story.
I feel like most people with chronic illness can relate to the first few years of their journey being filled with lots of tears, emergency rooms, and medical gaslighting. Medical gaslighting describes when health care professionals seem to invalidate or ignore your concerns. It can be linked to missed diagnoses, delayed treatment, and poor health outcomes. It might damage your trust in the health care system and make you less likely to seek care (health.harvard.edu).
The amounts of times I have been called "hysterical" or "confrontational" is countless. I've been given anti-psychotics and anti-anxiety meds without being told while in the ER to "calm me down." I wish the current me could hug Sara of the past and tell her she will get through it even when she feels like she won't.
Over the next months, I continued to struggle with various worsening symptoms. Chest pain, heart palpitations, and constant dizziness had me stuck in a permanent seated position, often having to elevate my legs in public.
Eventually, after many ER trips, heart monitors, and EKG's; my Tilt Table Test at Stanford alerted us of a heart arrythmia. I had been told by multiple physicians at emergency rooms and doctors offices that it read as slight afib, but was nothing to worry about or monitor. It was at this Tilt Table Test appointment that I was "officially" diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome).
Even though the heart arrythmia is separate from POTS, both conditions have almost identical symptoms. The conditions together had me feeling I was free-falling into the deepest pit imaginable. The fact that they coincide in symptoms made managing symptoms extremely difficult because a flare of one condition would exacerbate the other condition. Anytime I changed positions, my heart would race, my vision would blur, and I would essentially black out or space out. I could only walk short distances safely.
The next year consisted of a lot of trial and error with medications because insurance pushed me out of Stanford and forced me to work with a local Cardiologist. He isn't a POTS specialist, but he does his absolute best, and that's all we really ask for as patients with chronic illness. I took so many different medications that had loads of awful side effects until I finally settled on a combination that worked to calm down the arrythmia and keep the POTS symptoms fairly at bay while I waited on an electro-physiologist referral to see if there was anything more I could do for the arrythmia.
After I was officially diagnosed with POTS, I learned about the connection it has with Chronic Migraine. When you stand up with POTS, your blood will pool away from your brain and heart and into your feet. This pooling can cause a myriad of symptoms, including tachycardia, brain fog, migraines/headaches, and pain. Over time, I came to find some treatments that helped reduce my migraines and head pain like ice hats, Botox for migraines, and some over the counter supplements. When I was finally able to meet with a UCSF Cardiology Surgeon in late 2023, I learned that I would be a good candidate for a cardiac catheterization and ablation. We were told that "its effectiveness would only be known after the procedure," but he was optimistic. I learned that I have had this arrythmia my entire life, and it was made worse by Covid. My ablation procedure was scheduled for June 2024.
May 15th, 2023. The day I tested positive for the second time. My viral load was low, and symptoms were seemingly mild. Similar to the first timeline: long-term symptoms came on months after my initial viral infection. Gastrointestinal symptoms started getting increasingly worse. I was finding myself eating less, vomiting up meals, and unintentionally losing weight with each passing week.
It was also becoming increasingly difficult to get the fluids and electrolytes I needed in order to manage my POTS symptoms. Because I wasn't getting enough hydration, I was finding myself becoming very weak and spending more and more time sleeping during the day. After some time of back and forth between GI doctors, I finally was able to get a Gastric Emptying Study ordered and done. A Gastric Emptying Study is when you eat radioactive food, and they take images of your stomach every so often to see how quickly or slowly your body digests your food. After my test, I was diagnosed with Gastroparesis. The GI doctor who ordered the test refused to treat me due to my "complex nature," so I waited for yet another referral.
In May, I started having increased pains in my abdomen. I decided to go to an ER and they only did some basic bloodwork and said my symptoms and pain were from Gastroparesis. Throughout the week, the pain and discomfort continued to get worse. At one point, it was so bad that I slept the entire day. When I woke up, I could barely move or walk without severe and sharp pains. I decided to go back to the ER, this time to a different one, and after many tests, I was informed I would be having emergency appendectomy surgery. So, I had surgery and then was sent home the same day with only a prescription for Tylenol.
It's safe to say I was in excruciating pain once the meds that the hospital had given me wore off. Finally, by the 5th phone call and me crying on the other line, they agreed to give me some pain medication. The recovery from my 'routine' appendectomy was brutal. I couldn't sit up or walk without assistance for over a week. Shortly following my procedure, I noticed that I had numbness and pain in my right hip and thigh. All I can think of is a) I have another condition or b) a nerve was pinched while I was on the operating table.
June finally come around, and the ablation procedure date was creeping up. I was very blessed in that I was able to crowdfund to cover some of the travel expenses. The day of the procedure when I rolled up in my chair, I was greeted with "God is with you", and I felt immediately at peace about what was to come. After all of the pre-procedure things, they rolled me back. I was able to request music and didn't end up having to be awake for the procedure itself, which was a relief.
My doctor gave my parents the update that everything went well. He said the extra beats were coming from the junction box that generates the electrical impulses of the heart. Because of that, he had to be careful to keep the ablation as close as possible without damaging anything. He was able to partially ablate, and now it's even looking like the procedure was more effective than we initially thought. I am currently titrating down some of my medication, started a new one, and am monitoring my vitals. All in all, it was a successful procedure.
A lot of these conditions that I mentioned, I likely had before Covid, but my infections made them much worse. One thing the ablation helped immensely with is my anxiety. All my life, I thought I had this awful anxiety, and really, it was symptoms of these extra beats in my heart.
I still struggle with pain and symptoms in my left leg and hip, but I'm so grateful to have some other health issues better dealt with. I'm hoping that in sharing my story, I can raise awareness for Long-Covid and Post-Covid medical conditions. I am so grateful to be a part of a community such as the chronic illness community; without them and Jesus, I wouldn't be able to keep fighting.
