Late April, I was asked to come in last minute on a Saturday morning for in-person tests and exams due to the post-COVID-19 recovery issues I’ve been having. After several tests, the doctor told me she had great news. I looked at her strangely and asked if they had a prognosis of how long it would take to get better. “No, but we have just ruled out permanent neurological damage from the virus.” I was stunned.
The doctor told me that they were highly concerned that I was in immediate risk because many young people my age have been having strokes and other sudden nervous system issues due to COVID-19. She didn’t want to “worry me unnecessarily” prior to completing the testing. I was super grateful that she didn’t tell me—I thought it was a simple follow up since I have so many other COVID19 recovery issues.
When the initial shock wore off, I asked her if I was out of the woods and would start recovering soon. She told me my body has gone through a significant ordeal with COVID-19, that it would take some time and that I needed to go in for more imaging testing immediately.
Which brings me to this afternoon. I’ve slowly been processing the reality that being COVID-19 “negative” doesn’t mean to ramp back up. At least not in the way that I had hoped.
Every week, I have several appointments to check in with my doctor. I see my care team more frequently than any other person in my life right now.
Recently, my doctor told me that the next set of tests will hopefully give them better answers to build a prognosis. On the flip side, if it leads to more questions, I will be referred to the infectious disease department. I imagine this to be like their version of Dr. House–hopefully, s/he will have some ideas as to what is going on with my health.
After I had shared the story about my neurological tests on FB, a good friend PM’d me. She had been recently admitted to the ER, and the doctors discovered that she had a mini-stroke. She is in her early 30s and was considered relatively healthy. She also had a mild case of COVID-19 just a few weeks earlier.
We began sharing with each other about the strange symptoms we had been experiencing and discovered many similarities. She also made me realize that the loss of smell I had been experiencing happened around the time I first experienced COVID-19 symptoms. (I had discovered I had a loss of smell when I ended up drinking beyond curdled milk a few weeks prior.)
Last week I finally saw the infectious disease doctor. I refer to him as Dr. House with my friends because it makes this whole situation more palatable. Humor, especially dark humor, always seems to help me mentally cope with the unknown.
The first thing “Dr. House” did was educate me that COVID-19 is no longer considered an upper respiratory infection but a vascular infection. Vascular infections impair blood circulation in the body and can affect all systems in the body.
The truth is, one doesn’t have to have a “bad case” of COVID-19 to be enormously impacted by the virus.
Can COVID-19 cause issues in the lungs and impair respiratory problems? Sure. COVID-19 can also wreak havoc on the nervous, cardio, gastrointestinal (GI), integumentary (skin), lymphatic, and any other system in the body because blood vessels are critical to the body everywhere.
I know I never imagined that getting over an upper respiratory infection would be this catastrophic to my health or this challenging to recover from–and there is a reason why COVID-19 recovery doesn’t look like what we thought it would.
The bottom line is: an upper respiratory infection doesn’t do this much damage to a person’s body and isn’t this difficult to recover from, but a vascular infection can be that challenging.
I’m not sure what happens next, or what the prognosis will be. My healthcare team continues to run more tests to learn more and to determine what the next steps should be. Meantime, I am doing the only thing I can do: take care of my health, physically and mentally, and share what I am learning along the way with others who might benefit from my journey.
On the Playlist 