Several days ago, one of our regulars here on the blog emailed me — apparently motivated by a mix of solicitude and impatience. I hadn’t posted in a startlingly long time, the unapproved comments were stacking up, and he asked, “You doing OK?”
When I explained that my absence from this venue reflected a lot of things — such as being busy with family, and still dealing with doctors and such in connection with the lingering effects of my having had COVID — he asked, “Could it be long covid?”
Since I was going to see my pulmonologist next morning (Friday), I said I’d ask, but that I didn’t think so.
I was wrong. He said yes, that’s what this was. I had been confused for two reasons. One, I hadn’t really paid much attention to all the stories I’d seen about “long COVID” — which I assumed referred to a continuing, contagious presence of the virus itself — and up to this point the doctor had referred to my problem as “post-COVID.” Of course, I hadn’t worried all that much about what to call it; I just wanted it all to go away. I was tired not only of the symptoms themselves, but the side effects of the remedies (for instance, my difficulties sleeping at night, caused by the long course of prednisone I was on).
On Friday, the bad news was that my lungs — still impaired by inflammation from the long-gone virus — were only working at 67 percent of normal capacity. The good news was that overall, he saw me as having improved considerably, and he took me off the prednisone! Yesterday was the first day I didn’t take it, and I slept like Rip Van Winkle last night, and through most of this morning. It was wonderful.
He also took me off colchicine. I had wondered why I was taking that, anyway — it’s known as a remedy for gout. It can also be helpful with arthritis, I believe. I assumed it was for something he saw in the battery of tests he ran last month (which I repeated several days before this appointment), and which I could not detect.
When I asked, he explained that colchicine is an old, inexpensive drug that helps prevent a “cytokine storm” — which is the phenomenon that leads to so many COVID deaths. Wikipedia defines such a storm as a condition “in which the innate immune system causes an uncontrolled and excessive release of pro-inflammatory signaling molecules called cytokines. Normally, cytokines are part of the body’s immune response to infection, but their sudden release in large quantities can cause multisystem organ failure and death.”
Inflammation like that which had messed up my lungs. It seems that colchicine prevents such a “storm” through the same mechanism that alleviates gout.
The doctor said that I, and many others, had not heard about this use of colchicine because so many were talking about another, extremely expensive, drug that does the same thing. I didn’t write down the name of that other drug, because I was uninterested in anything that cost “$10,000 a dose,” especially since colchicine did the job.
So now, all I’m taking that was prescribed by this doctor is Vitamin D3 (which, I have learned, is actually a hormone rather than a vitamin, but since I don’t fully understand the difference, never mind). And he had me reduce the dosage of even that — from 10,000 units a day to a mere 5,000. He had had me on the high dosage because the standard range is 30-80 ng/mL, and mine was at 17.3 on the first test. He told me last month he wanted to get me closer to 60 than a mere 30. According to last Monday’s test, I was at 55. Satisfied, he reduced the dosage.
So, I’m getting better. The main restriction I had experienced was a lack of stamina. I haven’t done my normal 10,000 steps in a day since before I got the bug. I’ve tried, but I haven’t gotten past 2,000 without feeling great fatigue and beginning to cough again.
The doctor says it’s time to start getting exercise — and to get some sun as well, which I assume would help with the D3 — but not to attempt 10k. He says 3,000 to 4,000 is more my speed.
OK, now you have my update. Which I have shared in such detail partly to explain why I’ve been so unavailable, but also to make a larger point. Apparently, about a fourth of people who get COVID are “long-haulers.” This is a huge part of the effect of the disease on our society. In fact, I waited almost two hours past my appointment time to see him because he was overwhelmed with patients with my condition. This guy is really, really knowledgeable about it, and I think a lot of other doctors are doing what my primary-care doc did — sending their patients to the expert. Which means he’s getting better and better.
Anyway, I say all that for the benefit of those of you who make the mistake of calculating the effect of COVID solely in terms of the number of people who actually die. As tragic as every one of those 6 million deaths has been, and as horrific as they are in the aggregate, that’s not the entire story. There are other things happening as well…
Oh, by the way — about that lame picture at the top of the post….
I couldn’t think of anything good to put there, so I decided to stage something that took off on the last picture I had staged to go with a personal update — this one. I had staged that one standing before the same window (for the light), but oriented inward, to show you where I had been for the last few weeks, including the futon I had been sleeping on.
I thought it would be good to turn it around looking out into the brilliance, dressed for a walk.
But aside from making for a horribly back-lit selfie, it also make provide a false impression. I have NOT been confined to this room for weeks now. The image simply illustrates the point that I’ll be going out even MORE.
It’s, like, way symbolic. Don’t you people dig symbolism?…
So sorry to hear this. I hope you still have your sense of smell and taste. I have a friend who has long haulers COVID from 2020 and she still has neither, plus the fatigue. Emory Hospital in Atlanta has a department for it but there is a long waiting list. Take good care!!
I never had the taste and smell problem, and I’m glad I didn’t!
I’m glad your health is improving and praying complete healing comes soon.
I read about a Clemson football player who had long Covid and had to take the rest of the school year off. Then the vaccines came out. He took the vaccine and began to get better. Of course, I know you had the vaccine. But maybe when your doctor gives the nod, you could get a booster and it would quicken your healing.
I DID have the booster, and I believe that played a big part in my having had such a mild case.
I’m very grateful for that.
What’s ironic here is that I had such a mild case — VERY low fever, dry cough, and just generally feeling lousy — but it left these other problems behind.
Those weeks after my initial positive COVID test, I kept thinking, “Good thing I’ve got a mild case! Soon I’ll be better!” But I didn’t get better. And I started bugging my primary-care doctor, and after he tried one or two things, he referred me to the pulmonologist. He started new treatments, and I got WAY better. I just still have this 67-percent lung capacity thing. Which I only notice when I try to exert myself physically…
Long COVID is an under appreciated problem. Hope you get beyond this soon. Sounds like you have excellent care.
Here’s hoping you get back to your normal self soon- sorry you’re having to deal with this.
Thanks, Robert! It’s great to hear from you.
I hope your opening went well the other day…
Y’all, Robert has an art show going on up in his neck of the woods…
Save for “long haulers” and a few others, for most Americans Covid is rapidly receding background noise as our infamously short attention spans are drawn to more recent problems and distractions, with plenty left behind in our collective wake.
My wife has a friend that lost her taste and smell and it’s been over a year and it just started to come back slowly. Doc isn’t sure it will come back all the way- just don’t know. Pretty depressing for her.
Hopefully, this will be behind you soon and with the warmer weather you can get outside some and soak up the Vit D.
I really feel for those taste and smell people. That would be rough.
I have a friend who had COVID LONG ago. Might have been in 2020. She had the taste and smell problem. Anyway, she mostly recovered — but has these really disturbing smell problems still. She’s like, “what’s that horrible smell?,” and she’s the only one smelling it….