Hi. My name is John, and I’m a COVID Longhauler.
I sat in my car as the late-morning sun warmed the interior, the only sound the soft purr of my Nissan Versa’s unimpressive engine. And I thought: “I think that’s it. I think I’m just … done.”
I had spent the past 45 minutes inside yet another medical office building doing yet another test ordered by yet another doctor who really doesn’t know anything more than you or I do at this point about Longhaul COVID. I had just completed my second pulmonary function test, the first one being conducted while I was sedentary and this one done while I was at first sedentary and then after I walked back and forth, back and forth in a hallway for 6 minutes.
The results were… good? Good, in that my oxygen level was fine and all the breathing into the tube connected to the machine that I did after was in the same range as all the breathing into the tube connected to the machine that I did before.
“It makes me happy that most of the people I’m seeing with post-COVID symptoms aren’t coming in here with really horrible coughs and are passing these tests,” said the woman who made me breathe and walk.
A small part of me wanted to throttle her.
I was this guy again.
You see, I’m glad she’s happy that she’s not seeing many Longhaulers who are hacking up a lung. I’m happy, myself, to not be one of those Longhaulers who is hacking up a lung.
What has me decidedly unhappy is that I am now more than two months into a series of tests I had hoped would find something that would lead someone to say, “Ah-HA! That’s it!” and then I would have a course of treatment that would leave me not so damn tired every single day, not so brain foggy, not so disgusted by whatever the hell is happening in my mouth, not so concerned when my heart starts racing for no reason, not so winded when I walk up the stairs in my house.
But no. Nothing.
I look now at the MyChart app and see everything I have done since I got sick of doing nothing and started John’s Magical Medical Mystery tour on Dec. 31, 2020. More than forty tests and procedures have been run, and the only thing I know is everything I already knew: I have thalassemia and it makes some of my blood tests look wonky.
So… can’t I just be… done?
I mean, I did the work. I did the tests. I found a Longhaulers clinic. He’s the one who ordered this second pulmonary function test, which basically showed nothing despite the fact that when I finished my little 6 minute walk it took an extra-long time for me to get my wind back and feel normal again, whatever that stupid machine showed or didn’t show. And the Longhauler clinic doctor, a decidedly nice man, freely admits: “I got nuthin’.” (Paraphrasing there, as you might imagine.)
The thing is, I don’t blame anyone in the medical establishment. Where I place the blame is a topic for another day and something I am working on to deal with. But this lack of knowledge isn’t the St. Louis medical community’s fault. They are trying. They just, well… they just don’t know jack squat.
And so I think I’m done. I think I don’t want to blow into any more tubes or have any more X-rays or give any more blood to be tested. I know that my participation means that doctors can learn, and I really do want to help, but I just… I just can’t. I am sick of driving to medical appointments and walking away either that day or when the results pop up on MyChart no more educated or assisted than I was when I started. I am sick of arranging my work schedule, which has already been screwed with enough by my need for daily rest periods, around appointments that don’t amount to, pardon the language, SHIT.
So I want to be done. But I don’t know what “done” really means.
I’m relatively confident my lungs and heart are basically OK in terms of what the medical folks can see. They avoided the worst COVID has to offer. I, however, remain… what’s the right word? Unwell? But if a host of physicians can’t find anything that gives you an indication of why you are unwell, is that really the right word? And if it’s not, what is?
And truly, the question is this: What comes next? Do I just… endure? Try the different things floating around the interwebs and social media support groups? In what combinations? For how long?
The medical community truly does got nuthin’. And right now, I got nuthin’ too.
One response to “When Are You Just … Done?”
[…] I made the decision last month to just… stop. Stop all the doctor’s appointments. Stop being a guinea pig for doctors who are trying to get a handle on this Longhaul thing. Stop thinking the medical establishment has any answers right now. Just. Stop. […]