My (Ongoing) Journey With Long Haul COVID-19

My story starts on Feb 29th taking metro north into NYC from our home in Fairfield County, CT. I had heard of a handful of confirmed COVID cases in NYC but at the time so little was known. We had the perfect day planed to take our two girls (18 months and 4 years old) to have lunch and pick out dolls at the American Girl Store before heading over to see Frozen on Broadway. The risk seemed so small at the time and we had been looking forward to this trip for so long. Being an active 34 year old, who’s never had a single health issue, I was overall unconcerned about our trip into the city and assumed if I ever did get COVID, I would be sick for a week or two and then move on. I have never been so wrong.

Our time in NYC was wonderful but then I woke up March 4th with a dry cough and a mildly runny nose. Over the next few days my symptoms grew. I had muscle aches, chills, fatigue, flu like symptoms, and a persistent dry cough. I began to wonder about COVID and called the newly established hotline. I was told tests were not yet available to the general public as they were prioritizing the limited tests they had available for the elderly and immunocompromised. Over the following week my flu like symptoms slowly began to dissipate but the virus had begun to move into my chest and my cough grew stronger. In the coming days I became so short of breath I could speak no more than 1-2 words at a time without gasping for air. I was only able to mildly increase my ability to breath by laying flat on my stomach in “prone position” and I could hardly make it from the couch to the bathroom. The following two weeks were some of the scariest of my life. I called the COVID line 3 more times before the woman on the other line finally said “You can barely speak and I hear you gasping for air. I am putting in a COVID test for you”. At this point I had been sick for nearly a month.

We now know that the ideal testing window is within 7-10 days of infection in order to get an accurate result and that early tests were also less accurate. At the time I was not aware of this and when my COVID result came back negative I was shocked. I felt like I was drowning or breathing through a straw. I felt scared going to bed every night that I would not wake up again. The inability to breath was unlike anything I have ever experienced. If this was not COVID I needed to know what it was so I went to the ER with every expectation that they would run some tests and then send me home. What they found was a pneumonia in my left lung with ground glass opacities that would be consistent with COVID. I was told my oxygen levels were too low to safely go home and I was admitted to the hospital, given o2 and monitored overnight. I was administered another COVID test but both of my ER doctors told me it would likely be negative as the virus was no longer shedding in my nasal passage and had moved into my lungs. They were right. Another negative test. My doctor put me in an isolated room, told me COVID was by far the most likely diagnosis despite my negative tests and marked down “probable COVID” in my medical chart. He explained that most people, even those who initially had positive tests, tested negative after a month of being sick so they would proceed with safety measures as though I had a positive test.

As I live in Fairfield county CT, one of the earliest Hot Spots for Corona Virus, my floor was almost at capacity with COVID cases . The entire night that I was in the hospital, at least once an hour, a haunting alarm would go off and over the loudspeaker. It alerted doctors that there was a respiratory emergency and someone was in respiratory failure in a certain room (I later found out 33 people in the state of CT lost their lives to COVID that night). Doctors would go running as I laid in bed, hooked up to oxygen, praying and thanking God for every shallow breath I was still able to take. I laid there praying all night, feeling like I was contending for my life. I can’t describe the panic that can so easily take you when you are gasping for air. Thoughts of my girls growing up without their mama, or my husband left as a single Dad were ever present. I fought each fearful thought after fearful thought and clung to my faith in a good God who I knew I could trust to be in control of every labored breath I took.

The doctors recommended that I stay longer than one night but all I wanted was to go home and lay on my couch with the background noise of my girls little feet running around our living room. I asked to be discharged and was sent home and told to closely monitor my o2 levels.

After another week my breathing eased up a bit and I realized I was getting better and not worse. I was now confident this wouldn’t take my life and I thought that in a few weeks I would likely be back to myself. Nothing could have been father from the truth. The coming weeks would be filled with a whole host of strange symptoms including debilitating fatigue, tachycardia, dizzy spells, joint and muscle pain, nerve issues, brain fog, shortness of breath, hand tremors and an overall progress towards recovery that was so slow It was hard to tell if I was truly any better from the previous week at all.

I was left completely unable to care for my family for the majority of the first 4 1/2 months of being sick. My husband had lost his job as an Architect due to COVID and I had never been so thankful for anything. He stepped in as full time parent as well as my care taker. My heart rate, which previously rested in the mid 60’s was now resting in the mid to upper 90’s. A short walk to the bathroom and my fitness tracker would alert me to abnormal heart rate. I would glance down to see my heart had jumped to the 130’s by merely walking down the hall. Most days my whole body ached and the fatigue I felt was so limiting that I could barely make myself a sandwich before collapsing on the couch.

I am a mama to two very energetic girls that I love to spend my day chasing after. For months I could not play with them. I could not even read them a short book as I would get out of breath after just a sentence or two. Brain fog was a struggle and I was often unable to recall words as common as “stroller”. I would stare at my computer, pushing through the fog to remember where to click in order to write an e-mail. Showering became a very difficult task that I knew would involve my heart racing out of my chest along with a debilitating fatigue and feeling of being unable to breath for hours after. I had a few strange nerve issues, one that even involved half of my tongue and face going numb. I panicked thinking I was having a stroke. I called my father (who is a rheumatologist) and he assured me based on my symptoms it was not a stroke but likely nerve related. I sometimes felt strange electrical impulses running down my leg. The fatigue and SOB were by far the most debilitating symptoms and the worst part was that If I tried to push through the fatigue I would often have a relapse that left me feeling ten times worse for 2-3 days after.

During this time I would speak with my PCP, who thank goodness, believed me. She told me she was almost certain I had COVID and that there was very little they knew about what to expect with recovery. I had multiple tests run on me with no additional answers. A heart echo and a huge panel of blood tests all came back normal. My pulmonologist would only see me via Telehealth and no pulmonary function studies were being run at the time due to risk of infection. No doctor seemed to know what to do to help me.

Laying in the sun with my daughter while recovering weeks later.

About two months in I found a Facebook group for long haul COVID survivors. I read story after story that I could 100% relate to. People going through the exact same symptoms with their doctors not knowing what to do to handle it. Yes, some had previous underlying health issues but a large percentage were like me, young, healthy and no medical record. Many had even been marathon runners, health experts or young adults in their 20’s. For so many of these people, after racking up thousands of dollars in medical bills, their doctors were at a loss and told them it was likely “anxiety”. I was thankful to have had doctors humble enough to admit that there was little they knew about the virus and that they believed me about my symptoms, believed I had COVID and just were just trying to learn about treatment options themselves.

Me and my girls during happier, healthier days.

As I write this I am 6 ½ months out from my initial infection. I am now about 85% better and can do things like grocery shop, make meals for my family and take care of my girls all day. I can manage a short beach trip or take a slow walk around my block. I still get dizzy spells, my chest is always tight, I fatigue easily and become short of breath when I do too much. I haven’t been able to go for a bike ride, a hike or run after my girls at the park. My now 5 year old keeps asking when I wont be sick anymore so that I can play tag with her again. I have to tell her that I don’t know. The truth is I hope I will fully recover but I have to live with the unknown. I have to make peace knowing I am not in control of my health and there is a chance these limitations may stick around for good. Just last week I was finally able to get a pulmonary function study done that shows I have now developed asthma as a result of being sick. It’s unknown if this will be reversible as I (hopefully) continue to heal.

While my life may look far more normal again I still remain very limited. Last weekend, for example, I went apple picking with my family. We had to walk up a hill to get to the orchard. I was only able to make it halfway up before I was exhausted and gasping for air. My father-in-law carried my youngest while my husband convinced me to get in her stroller so he could push me the rest of the way up the hill. I tried to keep it light hearted, laughing off the funny looks from people who passed. I knew I needed to have a sense of humor about it all (my 5 yr old especially found this all amusing!). The truth is, it felt like defeat. It felt discouraging. It took everything in me to choose thankfulness for the beautiful day with my family and to get my thoughts back on track. But in the end, we had fun and have some silly memories I sure won’t be quick to forget.

When your health is taken from you for such a long stretch of time it becomes not only a physical battle but also a spiritual, mental and emotional one. As a licensed professional (mental health) counselor by trade this is something I have been very aware of and feel thankful to have the tools necessary to fight this ongoing battle. In the hard moments I choose to remember a conversation I had with God in the hospital as I listened to that “respiratory failure” alarm blaring. I remember I prayed for whoevers life was slipping from them in that very moment and I also prayed for my own life that felt so fragile. I asked God if he would allow me to be there for my girls as they grew up and to spare them the trauma of loosing a mother. I didn’t care if it meant my lungs were scared beyond repair and I spent my days in a wheelchair. I just wanted to be there for them. To be honest, it’s hard to feel so limited. I have moments I get discouraged but I am far from being in a wheelchair. I can do my laundry, make a meal and play on the floor with my girls. I can even read them books again. I think back to that desperate plea where I felt I was contending for my very life and I just feel so thankful for every moment I have knowing that it’s not promised to me. The truth is my health has never been promised to me and God knew the number of my days before I lived a single one of them. I am choosing to be thankful for what I CAN do today rather than what I CAN’T do. I believe I always have a choice to choose my perspective.

Back at the beach 6 months later. This picture took a lot out of me but I was so proud I could throw my baby in the air again!

I’d like to say that I am not sharing my story so others live in fear. I share it because I know there are so many more out there with a story like mine. I want them to know they are not alone. I also believe we should take responsibility to be diligent in maintaining all of the precautions we can with using hand sanitizer, masks and socially distancing ourselves. At the end of the day we have to let go of what we can’t control and contracting COVID is outside of our control. Wearing a mask and minimizing risk is very much within our control. If you are young and healthy please let me encourage you to take this seriously. I truly don’t care about the politics of it. Please wear a mask. Don’t live in fear but please live responsibly. It may not be likely that COVID would take your life but please realize it’s still possible that it could take your health. Long Haul COVID is real and if you struggle to believe it, even the CDC is now acknowledging it. A quick google search will provide you with more than enough evidence. If you’d like to read more, this is one of the better articles I have read:

Long-Hauler COVID Patients Just Met With The Who

Thanks for reading my story and I hope you and your family stay healthy this season!

xo,

Kelly

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