January 22, 2021 at 9:42 am #16145Bailey VincentModerator
Well, it’s happened…. My family had its first COVID scare.
Okay, it’s not really our first. Technically it’s more like our third. The first time was when the pandemic had just started, and my daughters played with a group of friends in the neighborhood without wearing masks (and then cried from guilt for the next 24 hours). It was terribly dramatic and terribly… well, teenager.
The second time was when I woke up feeling absolutely awful, and (because I hadn’t gone anywhere and wasn’t grabbing as many CF-style-crud from my dance students) I worried it was something more sinister. In the end… it was just CF.
The third time was this week, when my partner (who works as a behavioral counselor on a need-by-need basis, since the pandemic put a pause on his salaried position) was sent home from work for exposure.
We are waiting it out at home knowing that even though the risk is negligible (he wore masks and we all feel fine), it’s better safe than sorry-you-risked-someone-else’s-life. I’m so happy his work is following all protocol, but the initial worry (“Does he stay at a hotel because we don’t have bedroom doors or places to isolate? Do the girls and I stay at a hotel? Wait, we only have one car. We can’t afford a hotel. What do we dooooo?!?”) was taxing.
I’ve already asked about ‘Vid scares before and how closely it has come to your life, but here’s another spin:
What is one of the worst infections you’ve battled in your time with CF? And when did you know that it was really serious? Did you feel it on your own… Did a doctor tell you… What was the Lightbulb Moment?
January 22, 2021 at 11:02 am #16149Jenny LivingstonKeymaster
I’m keeping all my fingers crossed that this scare turns out to be nothing serious. I empathize with the frustrations you’re feeling over this!
To answer your question, my worst illness was actually during our nation’s last big virus scare – H1N1 “Swine Flu.” My daughter was only 3 months old and I had gone back to work full-time out of necessity. I worked in banking, so I was in contact with a huge number of people daily. When I got sick, at first I didn’t think much of it. After it started to affect my lungs, I saw my local primary care doc (who delivered Morgan) and she said, “We don’t have access to tests right now, but because we’ve had so many positive H1N1 cases, we’re treating anyone with symptoms as if they have it.” I was sent home with instructions to rest, hydrate, and return if things got worse. Well… they did indeed get worse. When I returned a week or so later, an x-ray revealed that I had pneumonia in both lungs. She assumed this was a result of the virus I likely had, so she prescribed a course of oral antibiotics.
Now, at this time, I had recently transitioned to my adult CF care center and had not yet developed a strong relationship with my CF team. I had never been incredibly “CF sick,” so I didn’t realize that what I was experiencing was a massive CF exacerbation. I did what I thought was best at the time — contacting my PCP — but of course, I have learned how to properly handle a situation like this.
The oral antibiotics didn’t work. I became sicker and sicker, and by the time I finally contacted my CF team, I was in bad shape. I couldn’t walk from my house to the car without having to stop to rest. I was on supplemental oxygen and needed to be wheeled into the hospital. My FEV1, which had previously been in the high 80s, was 27%. There was talk of intubation, but luckily that didn’t happen.
This was one of the scariest experiences of my life. It was the first (but not the last) time I felt like I might truly be dying. It was also a learning experience. Before that, I truly didn’t know that my body was capable of declining so drastically. It was also during this illness that I got to know my CF team a bit better and began trusting them more. My doctor was actually out of town for Thanksgiving, but she called me twice (not the nurses or attending physician; she wanted to talk to me) to see how I was doing.
I apologize for the incredibly long response. Once the memory came to me, it was like opening the floodgates!
I will be thinking of you and your family through this exposure scare. Wishing you the best, always! <3
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