Beautiful milestone: It's been six months since I was discharged from the COVID ICU. For many friends and family, I've been the token "this is real and happened to someone I know" person. I'm happy to have shared my experience, and think it's equally important to share what's happened since I returned home.
My provider has said multiple times, "I'm glad you are doing so well, most of my COVID patients are not..." I've been so focused on getting back to normal life, that I hadn't even thought of any other outcome. It's sobering.
I'll start with the good news: I have a broader life perspective. The experience showed my driven, type A personality what really matters and what's worth getting worked up about. We are given a certain number of heartbeats. It's important to spend them on things that bring and provide joy to yourself and those you love.
And, a quick soapbox moment: I understand that COVID has a low mortality rate for young and healthy people. But if you choose to decline the vaccine, unless you are staying at home 24/7, you are risking your family and other folks who aren't so young and healthy. And importantly, even if those folks don't die, COVID creates long-term physical changes. Believe me, it's not worth the risk!
My COVID update - six months later
- My lungs now limit me from certain activities. Sure, I had no plans to run a marathon, but I am sad that it's no longer an option. I'll just have to plan to walk the marathon.
- I've had two spring/summertime colds and both ended up as a mild case of walking pneumonia, with one turning into ear infections and an eye infection. Changes to my immune system and lung function mean every cold now can cause pneumonia. I have no associated lung/chest pain, so other than a fever, I don't know when this is happening and seems to surprise me every time. I now *must* slow down when I have a cold and rest.
- Clinicians find my case fascinating. I saw an urgent care doc for my last chest infection in June who couldn't believe I wasn't intubated as soon as I got to the ICU. He asked me questions for 5 minutes straight and all I could tell him was, "I didn't feel sick, I was walking around, asking questions and making jokes, so I guess they were waiting to see what would happen." I'm grateful I was an anomaly. Maybe my super power is resilience.
- I'm still building back endurance. Having less than half lung capacity for a 2-3 months took a significant toll on my body. When I first got home, Richard helped me walk through the house. I had a cozy chair brought into the bedroom and stayed there for a week, as prescribed. I started by walking to the kitchen once a day, then around the house, then up the stairs. I'm now walking 2-3 miles per day, and this took a good bit of work!
- In the last few weeks, I've found that I no longer have to remind myself to breathe deeply. My pulse ox is now around 94 when I'm not active and breathing normally. (When I focus on breathing, I can get it higher, but that's no longer the normal state.)
- My heart rate spikes with any significant activity. Not fun and doesn't seem to be burning any additional calories. :)
- I've cried. A LOT. Part of this was because I was on powered-up steroids and they didn't taper them down. Hello, cold turkey.
- Candidly, I have significant PTSD from waiting on/watching for my vitals to crash in the hospital. I am still sorting through the emotional aspects of that and still have nightmares. A lovely lady I look up to at work, who also happens to be a nurse executive who spent her adult life caring for all types of folks, told me, "people do what they have to do to get through trauma while in the hospital, the real effects start to show up when they get home." So true.
- Interestingly, my care team didn't tell me all the details of my admission. Maybe they thought I knew? Perhaps they were trying to focus on the positive? I pieced all of this together late into my stay, and then when the care summaries and bills arrived, and I saw ICD10 codes, care provided, etc. This triggered PTSD and survivor's guilt in a big way.
- I didn't know I was in the ICU until 4 days in. I truly thought I was on a normal COVID floor for "observation" in case things turned south. I should have asked, but it didn't feel like a possibility.
- No one ever told me my diagnosis was late-stage acute respiratory failure. Yes, I should have known, but I didn't.
- I didn't Google any tests or symptoms in the hospital. I think this was out of self-preservation. I did research everything once I got home. It was a painful realization of how close I was to bad outcomes.
