My Journey with Coronavirus & Autoimmune Disease
On March 7th, my husband returned from a work trip to Australia. Before he left for the trip, there was hardly any news about the virus. But by the time he returned? The world was preparing for a shutdown.
When he came home and the news of the virus became more and more prevalent, we both knew, given my past experience with the flu, that if he had been exposed to the virus, the chances were very good that I would get it. I have multiple autoimmune diseases, and I get sick often. When the flu is around? My husband and kids are fine, but I always get it. When there is a GI bug going around? Each and every time, I get it. I feel like I catch every single virus that comes through this house.
At that time in early March when Matt was traveling to and from Australia, there was so much we didn’t know. He should have been quarantined by himself immediately when he returned home. He should have worn a mask on the airplane. There are so many things we could have done to try and prevent him from spreading it to me, but hindsight is 20/20. We simply did not know.
And then it began. I wasn’t feeling well. I was exhausted. I had a sore throat and a headache. But I didn’t have a fever. It kept getting worse, so on Thursday March 12th I called the doctor. I told him that Matt had been on an international flight exactly 2 weeks ago. I also told him I had had an exposure to someone who had tested positive for the virus, at an event I went to on March 9th. I told him of my symptoms. My lungs were tight and breathing was hard. I had a sore throat and a headache, I had the chills and was exhausted. I was having intense diarrhea. However, I did not have a cough, nor did I have a fever, which at the time, were the only symptoms they were looking for as possible Coronavirus indicators.
I asked to be tested. I was told no, they weren’t available to me, despite my history of a weakened immune system. I didn’t fit any of the criteria. I hadn’t been to China or Italy. I wasn’t over 65. I didn’t have a fever or a cough. I didn’t have cancer or diabetes or a heart condition. And I didn’t require hospitalization. So they refused to test me, and I was told to stay home and rest. There was no treatment available.
By Monday March 16th, I was having difficulty breathing. So much so, that I woke up that night in a panic because I couldn’t breathe. We called the doctor, and he told me that it was most likely a panic attack. Now, as a frequent panic attack sufferer, I knew that wasn’t true. This was a lack of air getting into my lungs.
Things proceeded to get worse. The next day, I couldn’t breathe when climbing my stairs. I collapsed to the floor and it took me almost 3 hours for my breath to return as normal.
I called the doctor and he still wouldn’t test me (not his fault, I still didn’t fit the testing requirements as defined by the government due to a limited supply of tests). But he did give me an Xray, which came back clean. He started me on a round of steroids (prednisone) to reduce the inflammation in my lungs to help me breathe.
For the 5 days on the steroid, I felt better. I thought I was on the upswing. And once the steroid was over, I tried to go back to living life as normal. I played basketball with my kids (gently, but still) and tried to go back to work. Big mistake, I learned later, because 2 more days later, I couldn’t breathe again. Actually, let me rephrase that. I could breathe, but it felt like no air was getting in my lungs. No matter how many breaths I took, I still felt like I was suffocating.
The doctor decided that I needed to be seen in person. So, I went to the hospital. They had all the proper PPEs and precautions in place, and I felt like I was walking onto a movie set. But after listening to my lungs, this new doctor determined that I did indeed have Coronavirus and in addition, bronchitis. She told me that my lungs were a wreck.
More medicine. A z pack antibiotic and a steroid inhaler. More rest and recovery. And again, I felt good while on the steroid inhaler, but once that was over, things got worse AGAIN. Talking was hard. In fact, after participating in a zoom call with the Autoimmune Strong member community, the amount of talking had me so exhausted that I couldn’t breathe and it was so scary, I went to the ER. I had intense chills and was sweating so profusely it soaked through my clothes. Couldn’t breathe. Still no fever.
The ER was quiet, and I was seen immediately. The doctor listened to my story and confirmed that he also believed that I did in fact have a moderate case of Coronavirus. He defined mild as feeling limited symptoms and severe as requiring overnight hospitalization, so I fit somewhere in the moderate middle. But unfortunately, he sent me home with no answers except that I needed to rest and wait it out. They did test me, finally. I was the first person in my local area to use the rapid response corona test. And it came back negative.
The next day, I received a call from the ER doctor who told me that the false negative rate on that test was very high, and that according to my symptoms, I should assume it was a false negative. Apparently, as I have been told, the false negative rate on the COVID-19 tests is 30%- which is quite high. This means that 30% of the people who take the test are actually positive, but their tests come back as negative. And he felt strongly that I fit into this category. But again, nothing to do but self-quarantine, rest and recover.
So that brings me to where I am today. It’s been over a week since that hospital visit, and I am breathing better. I am exhausted and sleeping all the time and I can’t do anything that gets my heart rate up because my breath gets tougher… but as long as I lay very low, I am okay.
I will keep you up to date as I continue to heal. Thank you all for your kind messages of love and support throughout all of this, it has been the light in a very dark tunnel.
With Love,
Andrea