I am a COVID-19 Long Hauler
By
Michael F McCarthy
I am a COVID-19 long hauler – maybe. And not by choice. In the past, I used to think that being a long hauler was a good thing. Being a long hauler was a choice that people made; it showed determination and commitment. As a linguist, I like witnessing semantic change to the English language. I think that the term for people with COVID-19 long hauler symptoms should be renamed to foreverners or aeoners or long-timers because there is nothing positive about being a COVID-19 long hauler except being alive. Recently I have seen in the press long COVID instead of COVID long hauler. I am ok with this.
Like so many Americans, I thought all I had to do to avoid coming down with COVID-19 was to practically hibernate in my house until a cure could be discovered or a vaccine created. We canceled our trip to the Grand Canyon, Mesa Verde, and Chaco Canyon with friends. For over a year, Anne and I stayed home. We just went to physical therapy and doctor's appointments. When we did go out, we wore masks and kept our social distance from people.
The COVID-19 pandemic made us change our plans. We had planned to stay at our Albany, NY home for the summer of 2020 to make daily trips to the nursing home where my father-in-law was instead of spending most of the summer at our cottage in Maine. We opened our swimming pool for the first time in five years. On March 16th, 2020, Anne received a call from the nursing home informing us that we could no longer visit Jim, my father-in-law, because of the pandemic. We think this restriction will be short-lived. However, as the days, turn into weeks; weeks into months we realize that we don't know how long this restriction will last and we might as well hibernate at our cottage on Biscay Pond.
New York state made nursing homes test their staff and residents twice a week for COVID-19. Dutifully the nursing home would report to us how many of their team and residents had COVID-19. I remember being terrified when we received the recorded call giving us an update.
It was not until early September that we received a phone call from the nursing home telling us that we could schedule an appointment to visit with Jim on September 15th for one hour. We made a plan to return from Maine on Monday and to visit Jim the next day. The visit had to be held outside in the parking lot. It was a noisy place and made having a conversation difficult. We wore masks and kept our social distance from him. Afterward, I remarked to Anne that "He had lost a lot." I thought it was caused by a lack of intellectual stimulation. That was the last time I saw Jim. His death on December 12th was due to complications from COVID-19.
In January, we started looking online for places to get vaccinated. Anne found a website and made appointments for us. The earliest appointment that she could find was April 12th. We told our friends and neighbors about the website, and they strangely were able to obtain appointments much sooner than us. By late February, I was searching for sites where I could schedule vaccine appointments earlier than April 12th. I found one such site and made appointments for us to get the first shot on March 10th.
So after my first shot of the Moderna vaccine on March 10th, I had made it to the finish line. I read that after two weeks from getting the first Miderna shot people were 80% protected from getting the virus. Anne and I had no plans to stop hibernating. All we had to do is to wait for April 7th to come around, and we would be safe from COVID.
My odyssey with COVID-19 started on March 23rd, 2021. I got up late that Tuesday. Anne told me that she had to take Bill and Chris to be tested for COVID-19 because our other housemate had just received positive COVID-19 test results. Before I spoke with Anne, I noticed that my throat was a bit scratchy, and my nose was slightly stuffy. Both my nose and throat had been fine when I went to sleep the night before. So I was a bit concerned when I heard this news.
In 2020 New York State set up a mass testing site at the University at Albany uptown campus. People could not just drop in for a COVID test. One had to register before going to the campus for the test. An armed national guard person greeted us with a flipbook of instructions, one instruction per page. The guard came out of his guardhouse and motioned to us to stop. The first page of instructions told us to stay in the car with the windows up. The next page asked us to put our IDs on the vehicle's dashboard so that he could see them through the windshield. Once the guard found us on his list, he motioned that our car was to join the queue for the test. All of the test procedure steps were done by hand signals except for the last step. The testing technician in full PPE gear motioned to me to put down my window by a person who proceeded to shove a cotton swab up my nose.
Before we left the testing site we were given a paper stating that it could take up to five days to get results. I was furious at this bit of news. How could they do this to me? Fortunately, I only had two days for the results. I was the only person whose test came back positive. After another day or two, two more people in the house tested positive. Out of five people in the house, Anne was the only that did not get COVID.
My doctor's office contacted me and asked me if I wanted an infusion of monoclonal antibodies. I say sure because I have read that it will help reduce the severity of COVID. People who I knew who had taken the antibodies, told me that they started to feel better the day after getting an infusion. Who does not want to feel better the next day? I had to wait until March 29th to get the infusion. The doctor's office sent me a PDF all about the monoclonal antibodies that I was getting. Reading the PDF could scare some because it listed everything that could go wrong with the infusion. I was undeterred.
The infusion procedure was only supposed to take an hour and a half. Instead, it took over 3 hours. I found out that the infusion cocktail is created only after you arrive at the hospital, and then it has to warm up to room temperature. The next day I expected to feel better. But I didn't. I kept waiting to feel better. I sure hope someone is doing a longitudinal study of people who got the monoclonal antibodies.
Towards the end of April, I was still not feeling any better. Because I have Crohn's disease, I decided to do a google search with the following keywords COVID-19, medicine, and Crohn's disease. At the top of the list was this link: Coronavirus (COVID-19): FAQs for people with Crohn’s and Colitis. It said if you are taking one of the following Immunosuppressants medications you should "Stop taking these until you feel better and contact your IBD Team for advice." Sure enough, I found a medicine in the list that I take. I was freaking out at this bit of information. Anne called my gastroenterologist to ask questions. She talked to his nurse who assured her that I should continue taking the medication. The nurse said that she would leave a message for the doctor asking my question. Before the nurse called the next day we received a call from the lab where my latest COVID test had been sent, tell us that the test was negative. After five weeks of positive tests, I was at last negative! The nurse did call back the next day and told Anne that the doctor had said that I could stop taking the medication. I am annoyed by the fact that none of my doctors called me to advise me to stop taking the medicine. Every doctor that I have ever gone to wants a complete list of medications that I am taking. I am left pondering this question: Had I stopped taking the Crohn's medicine when I first learned that I had COVID, would I have felt better sooner? I will never know.
The first few days of having COVID, I did a fair amount of dry heaving. I lost my appetite. Breakfast, which generally takes me ten minutes to wolf down, took an hour and a half to complete. Dinner was no different. I kept feeling like I was about to throw up. I didn't feel like drinking anything. All I wanted to do was to sleep. I did sleep a lot.
Before COVID, I would always get up before Anne. Now it is just the opposite. I had to stop doing my exercises because they made me feel dizzy. I felt weak and was easily fatigued. The last couple of weeks that I had COVID, I had a low-grade fever in the evening.
Anne and I will have spent from July 11th to October 18th at our cottage in Maine. I was able to swim to the small island in the middle of Biscay Pond almost daily. Anne thinks it is a half-mile from the shore. Once Anne timed me. I was able to make the round trip in twenty minutes. There is another island in the middle of Biscay pond that is much farther away from our property. In the past, I had swum to both islands and thought nothing of it. By the middle of August, I wanted to do that swim again and felt that I could. So on September 18th, I swam to both islands. It took a lot longer than I remembered.
I am feeling a lot better. Gone are the dry heaves. Once again, I can wolf down breakfast. All of the symptoms that I mentioned above have abated. And yet I don’t feel 100%. I read an article on the long-term effects of COVID on the brain.
So even though my COVID case was relatively mild, I could have residual effects for a long time. I implore the reader to get vaccinated. Do not let anyone tell you that COVID is just like a cold or the flu. I have had both and my experience with COVID was nothing like a cold or the flu.