Some Kind of "-itis" (Part 4)

I was going to write this post in the same format as my other ones—an overly long, journal-style narrative that includes a lot of brain-dumping. Instead, I’m going to shorten things up a bit. In the last ~6 weeks, I’ve had a chunk of testing done and I’ve been lucky to get in for some expedited, “bigger” tests, thanks to my awesome medical team.

First, there was the emergency AAA-screening. New-to-me family history revealed that my paternal grandmother had surgery to repair her abdominal aorta when she was about my age. Google says that if you have a close family member who’s had issues with or had AAA, you’re twelve times more likely to have the same. Google also calls it the “silent killer” since most of the time, you don’t know you have it until it’s either found during a screening for another issue OR it ruptures and you die. So that was cool. But, turns out my abdominal aorta is totally fine, so my Google-induced stress was unwarranted and my ongoing shortness of breath had another cause.

While I waited on the next round of testing, I just sort of dealt with the breathing issues. There were several instances where I would just lay in bed inhaling as gently as I could because I would wake up feeling like I’d run 50 miles in my sleep. I’d have to psych myself up with the mantra, “you can breathe, you can breathe, you can breathe,” because I honestly felt like I would just pass out the moment I got out of bed. Luckily that never happened but it wasn’t a very confidence-inspiring feeling.

Next on the testing docket was a pulmonary function test. This was a weird test that basically tested how my lungs are working and if there is anything impacting my lung volume/flow rate/airway/etc. The results actually came back with a “semi-rare” finding of a kind of extrathoracic airway obstruction called “ vocal cord dysfunction” so I’m now slated to see an ENT in July, because medicine is never in a hurry unless you’re about to die. Basically, my vocal cords might be closing when I inhale, which is why I feel like I’m not getting enough air sometimes. Lots of things could have caused this, but we won’t know until I get in front of the doc.

Final round (for this post’s purposes anyway) was a cardiopulmonary exercise test. This was a pretty sweet and highly educational test and I really want to go back and do it when I’m in tip-top shape. Do you think insurance will cover it if I want to do it just for funsies…? Cool thing about this test was that it gave me a lot of peace of mind. My heart, BP, and lungs all functioned normally throughout the entire 12 minutes I exercised my little heart out (sweating FTW!). No chest pain, no arrhythmia present now! This means that I’m pretty much cool from a cardiopulmonary POV to start getting my sweat on now.

I’ve also been able to get some more info on the state of my poor adrenals and their impact on my ongoing symptoms, like my ever-present palpitations. I continue to sort of … deal with them whenever I’m eating, sitting, laying down, or in “rest and digest” mode. My body is still relearning how the sympathetic and parasympathetic nervous systems should work together now that my catecholamines are in recovery mode so I’m getting these funky waves of heart flip-flops whenever I’m just relaxing. Super annoying, but being able to put words behind the symptoms has helped me feel more confident driving and being alone. She started me on a few new things, including n-acetylcysteine (NAC), which has been used to help patients with lung issues, and has also been showing promise in treating patients with long COVID, just in case I’m dealing with that. I’m now cleared from an adrenal POV to start gradually returning to activity. I’m starting with walks and some more intensive yoga, and will hopefully be playing with easy running and riding in a week or two. I’m over the moon with this news and have felt more energetic because of it!

Another really critical side effect of my newfound sedentary life is that my body has transformed dramatically over the last 3 1/2 months. I train endlessly when I’m healthy and I take a lot of pride in being strong and fit. I’ve struggled with restricted eating in the past and dug myself out of that hole years and years ago, so this whole no-activity lifestyle has been a real B for my mental health. I have only enough muscle left on my body to perform basic functions and I get winded going up short flights of stairs or the little hills in our neighborhood. I have a bit of a journey in front of me and I’m gearing up for a few months of hard work.

So, how did I end up where I am? Short answer is that nobody really knows. My cardiologist feels like it is unlikely that I had COVID-19 or that COVID could have caused my current issues since if I had it, I was very much asymptomatic. My research agrees with this sentiment, especially on the grounds of my adrenal issues. Current studies are showing that in order for COVID to damage my adrenals to the extent that they were damaged, I would have needed to be symptomatic to the point of being hospitalized… with the big time gap between when I was vaccinated and when I went to the ER, it’s also unlikely that this was a vaccine reaction, despite pericarditis being a known side effect of the COVID-19 vaccine. I could very well have just gotten some random virus and my loony tunes immune system went haywire, attacked a bunch of stuff it shouldn’t have, and left me in this cobbled-together state. This is not uncommon, apparently, and my cardiologist has treated several athletes pre-COVIDland who had viral pericarditis. I’ve watched enough House to know that this is a genuine possibility.

I will be on medication for pericarditis until September since technically I have “recurrent pericarditis” and we really, really don’t want it to come back. I’ve started weaning off of the beta blocker (double-good because propranolol can exacerbate existing respiratory issues) and the hydrocortisone—exciting! But also a bit challenging. I've found that I'm pretty sensitive to the beta blocker in particular so I've been put on the "v v v extra super slow" taper (my words, not the docs lol). I’ve also been advised to not get boosted during all of this treatment since it could end up being a not-so-fun time for me, so hopefully that doesn’t turn me into a modern day societal leper…

And finally, I’m under strict orders to take it easy for the next twelve months. No pushing it through workouts, no trying to PR unless it just happens organically, just very gentle, lightly straining exercise. I’m struggling a bit to wrap my head around what that will look like if/when I’m able to get back out into the mountains to play but as of now, I’m just grateful that my health is returning, that I’m able to move again outside. I now have a hard “no complaints” rule about being “forced” to train or do anything physical with my body. Our health is an absolute TREASURE and we should be thankful for every day we can move without pain or sickness or anything else.

PS fostering puppies again has been a total life-changer for me during recovery. Everyone (responsible) should do it.