My Battle With COVID 19 The Battle Begins
My mother, daughters, and I were all considered higher risk for COVID-19. My mother is at a high risk age and has a history of heart disease among some other things. I am terrified of her being exposed to this virus. Her husband continues to venture out frequently and I am so afraid of him bringing it home to her.
My daughters and I each have autoimmune disorders putting us in a higher risk category. On the one hand I took some comfort in the fact that we were all type O blood and that my older daughter is on hydroxychloroquine. She struggled to get her prescription at times due to the hoarding that occurred early on as reports suggested this might be a preventative or cure. My younger daughter has been on a couple of biologic medications that suppress your immune system and had just started a new one.
I had been on Enbrel, a TNF inhibitor that suppresses your immune system for a year and a half. Initially I was very concerned about this drug causing me to be a greater risk. But studies are being done on some of the biologics to help fight this coronavirus. It seems that part of the deadliness of the virus is that it creates an overwhelming immune response and essentially mimics an autoimmune disorder. So maybe I was better off being on this medication. This being said my rheumatologist told me I was crazy if we attended a family wedding so as much as it hurt to do so we did not go.
Our youngest daughter came home about an hour after the bat incident to spend a few days with us over Father’s Day weekend. She had been home twice before – Mother’s Day and for a doctor appointment a couple of weeks prior. While cases were starting to increase in our area so did our confusion about how bad the virus really was. Who do you believe? There seemed to be credible sources from both sides and it was seeming less likely that it could be avoided. That being said the biggest difference we were making in our life was spending time with our daughter. I still wore a mask everywhere except at home. I did not go into stores, did curbside pick up for groceries and did not eat out.
While home our youngest daughter became congested. This seems to be a regular occurrence every time she comes visits. She was asking me for allergy medicine but nothing I gave her was doing much to help. We joked that her hometown no longer liked her because every time she comes back she gets a sinus infection. She started feeling congested on Saturday, June 20, 2020. She stayed until Tuesday but I last saw her Monday night. She continued to feel bad when she got home and told us she wanted to be tested for COVID. We thought she was being dramatic but I thought she did need a Medrol pack and antibiotics so I told her to head to Urgent Care. She was tempted to take a Z pack being offered by a friend but I discouraged that. When she got to the Urgent Care she didn’t receive an exam or medication, just a COVID test. She was a little despondent that she was sent home with no relief for her symptoms. The doctor apparently told her he thought it was just allergies. Not thinking about what she was doing she went home after being tested and took her newly increased dose of her new biologic.
When she texted us on Saturday morning and told us the doctor had called and she was positive for coronavirus her sister’s immediate reply was “Are you joking?” Very quickly we knew she was not. She was very upset. And then the realization hit us; we let our guard down, and we had definitely been exposed. She and I had been together a lot while she was home; I think we even shared tastes of food and drink. She did seem to lose her sense of smell while she was home but we all feel that way with sinus issues so we didn’t realize yet that she was losing smell and taste in a very different way.
Now my mission became getting my husband and myself tested as quickly as possible. This proved to be a difficult process. I mentioned that cases were booming in our area. It was June 27th, 2020. The earliest appointment I could find was July 4th. One thing about me though is when I want something I am like a dog with a bone. I continued calling facilities and Sunday morning I found someone who was sympathetic and scheduled us at 3:35 and 3:40 that afternoon. I wanted to be certain that my staff was safe. At this point my employee who had become sick at work was still out for quarantine without her test results.
I did have a sore throat, slight cough, headache, and some congestion at this point. My husband had some mild congestion and the beginning of a headache. We sat side by side as they told us, “you were exposed so you have it,” and then took our swabs. In reality it seemed that the thinking had changed as they were overwhelmed with testing to exposure automatically equals positive and a test may not be indicated.
A few hours later I was out of bed trying to vomit and laying on the floor feeling terrible. By morning I was running fever and essentially unable to get out of bed. As my husband watched me throughout the day he decided I needed to go to the hospital. I told him I just needed rest and to get the fever down. Day two was similar. We received our test results Tuesday night. I was negative but my husband was positive. The doctor seemed insulted when my husband asked if they could have mixed up our tests. I said, “I’m symptomatic. Are you telling me if my fever breaks I can go back to work,” (not that I would) to which he replied, “that is a grey zone. I mean you probably have it because you have been exposed”. I didn’t really feel like a medical professional should work with grey zones when it came to COVID. I insisted on being retested which he agreed to do the next morning at 9 AM and said he had it set up.
As I slept that night I had sweats and seemed to break the fever. I got myself out of bed the next morning to make it for the test. There was a huge line of people waiting, hoping to be able to get a walk in test. I called the desk and they had no idea about my appointment. I still felt terrible. I still had the headache and now I had an impressive cough and fatigue and muscle/joint pain. The appointment was a mess and no one really knew why I was there. I finally broke down and cried; I cried hard the whole time apologizing to the healthcare team and them offering no comfort. I definitely had a nasty cough now. They insisted on performing chest x-rays which fortunately were clear. They took another nasal swab sample and the nurse said, “they may have mixed up your samples.” There was concern expressed because I had started Humira the Thursday before I knew about our exposure. And I was sent home to wait again.
The good news is that I had not been to work for two days prior to my symptoms starting.
When they called me five days later with results even the medical staff couldn’t believe I was negative. They were trying to theorize why I would be. I had literally sat sandwiched between two positives in my home for several days and had all the symptoms. We all had a few things in common – the headache, the muscle and joint aches, and the fatigue. I just had the addition of fever and cough and my daughter had the loss of smell and taste. Meanwhile my older daughter tested negative but her boyfriend tested positive and was in bed for two days as well and had the headache and fatigue. My daughter had times of fatigue and not feeling well and eventually lost her taste and smell. She is also on hydroxychloroquine so maybe it interfered with her three test results. Maybe it kept her from getting as sick.
During this time I spoke to three doctors at the emergency room, my endocrinologist, my primary care, my gastroenterologist, and my rheumatologist. Everyone was in agreement that I must have had COVID and the tests have a high false negative rate. They were not even surprised that I might have two false negatives. I was somewhat obsessed with knowing I had been infected so my rheumatologist ordered an antibody test for me and I ordered a home test to try one more time. My home test was also negative.
I could have been back to work at 10 days after being tested as I had been fever free 72 hours and my symptoms had lessened and my cough was gone. My rheumatologist wanted me to wait until my cough was 100% gone before restarting the Humira. Humira is a monoclonal antibody injection that I had been switched to from the ENbrel. It is also immunosuppressive. I started to take my injection on July 9 because my cough was gone but I thought it wouldn’t hurt to wait one more week. To put my mind at ease and hopefully ease concerns of some staff members I also waited 15 days to go back to work. This was the end of round one for me with COVID.