Sarcoidosis Made My Close Call With COVID-19 Even Scarier
We’re all familiar with the evolutionary fight-or-flight response. When faced with stress or danger, we go through physiological changes that enable us to either battle a predator (fight) or escape the situation (flight).
However, there is another option, although we probably wouldn’t choose it willingly: to freeze. That’s what happened to me during a recent COVID-19 scare.
My husband, Michael, is an essential worker, so he’s been working night and day throughout the pandemic. While we’re grateful that his income and our health coverage have not been affected, we’ve also been concerned about his constant exposure to people who may be carrying the virus. We’ve been as cautious as possible, using face masks and hand sanitizer, practicing social distancing, and getting our vaccinations and boosters, which kept us safe for two years.
Michael gets tested at work regularly, usually once or twice week. Two weeks ago, we received the dreaded notification: He was positive for COVID-19. Instantly, I froze. I was panic-stricken and didn’t know what to do. Although I’ve stayed up to date by watching the news, listening to the U.S. Centers for Disease Control and Prevention (CDC), and reading updates from top scientists and trusted sources, all that knowledge left my head when I needed it most.
But the test result was from nine days earlier, and he’d already tested again since then. Regardless, I knew I needed to get tested, but where? Every urgent care and pharmacy that offered testing in my area was booked and didn’t accept walk-ins. I researched stores that sell at-home tests, but all of them were out of stock. I didn’t know what to do.
Eventually, I remembered that a family friend had recently purchased some at-home tests, and my mom offered to pick one up and bring it to me. Time seemed to stand still while I waited. The hour it took for her to arrive felt more like weeks.
My husband had been asymptomatic, but I still worried that the symptoms would come. He has asthma, so I was especially worried about any respiratory complications. More than that, I didn’t know if I’d be able to take care of him if he got really sick. He’s been my caregiver for years now, taking care of me in every way and filling in for everything I can no longer do because of my sarcoidosis. How could I be there for him if I can’t fully care for myself?
Of course, I was concerned for myself, too. Given my exposure to someone who had tested positive, would I still be able to get my weekly infusion treatments and physical therapy? Would I get so sick that I couldn’t stay in my home? I started thinking about all of my friends who have gotten COVID-19, particularly those with sarcoidosis. I thought about how many of them have been hospitalized, how many now suffer with long COVID-19, and how many have died from the disease. What would happen to me?
As I thought more about this, my anger started to blend with panic. It took nine days for my husband to get his positive test result. The CDC-recommended five-day isolation period was over before we even knew he was positive. How many people had he unwittingly exposed in those five days? Had I exposed anyone? How many others unknowingly expose high-risk people to the virus?
Kerry preps and takes a COVID-19 test, fortunately with a negative result. (Photos by Kerry Wong)
Although this experience was incredibly scary for both of us, in the end, that’s all it was: a scare. In the days that followed, my fears began to fade and were replaced by gratitude.
My husband remained asymptomatic and has since tested negative. I was able to receive the treatments that help me manage my sarcoidosis, neuropathy, and myositis. Although local stores and clinics couldn’t provide me with testing, I was still able to obtain a test. Despite being in close contact with my husband every day, I tested negative.
This could have gone in so many different ways, and I’m grateful our experience wasn’t worse. I’m not taking it for granted, though. If anything, this experience reinforces for me the importance of taking precautions. Stay safe, everyone!
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.
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Letha Piper
Thank you for your story. I did test positive a few weeks ago. I have sarc in my lungs. A week before I was diagnosed I had just weened off of prednisone after 2 and half years. When I was told by the doctor I was positive fear went through every part of my body. I was running fever and felt miserable. I tried not let the fear get the best of me. I contacted my pulmonologist and informed him of my diagnosis. He told me to start a high dose of steroids and to take a break from the methotrexate . I asked is there anything else but he was finding good results with this. I hated those words “steroids”. My body has been broken from them. I have back issues now, I broke my humoral head in 3 places plus the brain fog. To name just a few of the issues from steroids. Why oh why did I ever let steroids control my life. But now I’m fighting a new battle COVID. I have missed so much from the fear and now the fear has entered me.
I started on the steroids like the doctor told me. He said only 5 days. For 5 days, 5 days to live and 5 days to fight. During this period I talked with my husband about my wishes. Yes if I end up on a ventilator. Wishes if I die. Wishes for my children and grandchildren. I had to have these talks. I really didn’t know what was going to happen. I had heard of a good family friend h hat was in the ICU. He was a picture of health plus 20 years younger than me with no health issues. My heart hurt for him and his family. Making last wishes seemed like the right thing to do.
I’m 12 days out from my diagnosis of Covid. I made myself Move and eat for strength. When I say move I went for small walks a few times a day outside. It was short and the weather was freezing. I had to make my lungs breathe fresh air. I prayed. I reached out and ask for prayers. I decided I was going to Fight. Today I’m feeling better. I drank lots of hot tea. A good friend told me rest… your body is healing. Today I feel like when I first got Sarc I’m extremely exhausted and walking is hard but I know I won the Covid battle for now. We are warriors let’s not let this disease define who we are.
🦋 Kerry Wong
Letha, thank you so much for sharing this. I can only imagine how scary it must have been, and I am so glad you've made it through the worst of it. Your friend is right - now is the time to rest as much as your body needs, so you can fight whatever battles come your way. We are definitely warriors, and we're in this together.
~🦋