The Daily - The Cruel Reality of Long Covid-19

Episode Date: March 22, 2021

This episode contains strong language.Ivan Agerton of Bainbridge Island, Wash., was usually unflappable. A 50-year-old adventure photographer and former marine, he has always been known to be calm in a crisis.Soon after testing positive for the coronavirus this fall, he began experiencing psychosis. He spent Christmas in a psychiatric ward.Today, we hear from Ivan and look at the potential long-term neurological effects of the Covid-19Guest: Pam Belluck, a health and science reporter for The New York Times. Sign up here to get The Daily in your inbox each morning. And for an exclusive look at how the biggest stories on our show come together, subscribe to our newsletter. Background reading: A small number of coronavirus patients have reported severe psychotic symptoms. Most had no history of mental illness.Some people experiencing long-term Covid-19 symptoms are feeling better after getting the vaccine, but it is too soon to tell whether the shots have a broad beneficial effect on patients with continuing issues.For more information on today’s episode, visit nytimes.com/thedaily. Transcripts of each episode will be made available by the next workday.

From The New York Times, I'm Michael Barbaro. This is The Daily. Today, even as rapidly expanding vaccinations offer a pathway out of the pandemic, there is a small group of people for whom the virus's lingering effects never seem to end. My colleague, Pam Bellick, on a rare and cruel case of long COVID. It's Monday, March 22nd. Yeah, I'm going to try really hard not to get emotional because I haven't talked about this since it happened. Well, take your time and wherever you want to start is fine with me.

Pam, tell me about Ivan. Ivan Atherton is 50 years old. He lives on Bainbridge Island outside of Seattle with his wife Emily and their three children. He's a former Marine and he has an incredibly cool job. He is a photographer, and he does a lot of adventure photography and a lot of expeditions. And it doesn't pay as much, but it's nice because I actually feel like I'm contributing to the betterment of our planet. And his most recent expedition was last fall.

He spent two months in the Red Sea in a submarine. Wow. Doing photography and cinematography of all sorts of natural wonders and things that they were discovering down there. So he spent two months in a submarine in the middle of the pandemic. Pretty intense, yeah. I was taking a bunch of COVID tests. You know, we quarantined before the expedition started. And then in order to get off the ship after the expedition was done, we had to test negative. The team took a lot of very strict COVID precautions, lots of testing. He tests negative as the expedition ends. And he has to take two or three flights from Saudi Arabia to get back to Seattle.

And he gets home a little bit before Thanksgiving. And then I started feeling some symptoms, you know, some common cold symptoms. And he goes and gets COVID tested. I started feeling some symptoms, you know, some common cold symptoms. And he goes and gets COVID tested. And then I had a positive test. Turns out that he is positive. So I quarantined in my bedroom. Yeah.

Which was kind of nice because I was getting room service for however many days. And it was mild. He doesn't have a very serious case. I lost my sense of smell. Mild respiratory symptoms. He loses his sense of smell. So this is all sounding pretty routine and pretty run-of-the-mill as COVID infections go. Right, right. And in fact, it sounds like he's pretty lucky.

I came out of isolation and all was fine. My family tested negative. So then... And then just a few days later, I got like this spam phone call. A few days later, he gets kind of an ordinary spam phone call on his cell phone. One of those things where you pick it up and then they instantly hang up. Okay. And right then, it was like a light switch.

It happened this fast. This intense paranoia hit me. And I was like, what's happening? Who is this? For some reason, this triggered sort of a cascade of paranoia and delusions. And then it steadily got worse. Every single car that drove by, I was convinced that they were surveilling me. All of a sudden, he is convinced that people were spying on him. So it was that specific wow

and I didn't tell my wife and I went like 36 hours without sleep every noise that I heard I would get up out of bed I would peer out of this little little window in our bedroom that looks down the street. And we live at the end of this little cul-de-sac area. And I would hear outside of our window what I thought were voices outside the window. And this is like 2 o'clock in the morning. So I know no one's out walking their dog at 2 o'clock in the morning. It was just to the point where I couldn't sleep. And I was absolutely terrified because I didn't know what was happening to me. Wow, he's really starting to kind of unravel.

Yeah. And so after keeping this to himself for about 48 hours, he decides that he really needs to tell his wife what's going on. I'll never forget the moment that he told me because it was just so out of character for him. I said, leave your phone on the dresser. And I pulled her into our closet. Wow. I pulled her into our closet. Wow.

He pulled me into our closet in our bedroom because he was trying to, you know, find the most private space that we could talk. And I closed the closet door. And I said, hey, here's what's been going on with me the last 48 hours. He said, I know this is going to sound crazy, but, you know, I believe people are following me. And the, you know, just the fear in his eyes, it was bizarre. And it was terrifying. I felt like this giant hole within me in not even knowing how to process what was happening.

Emily is just stunned. She's shocked. You don't think your partner is going to have a mental breakdown, right? It just seems so perplexed. Yeah. This is a man she's been married to for 18 years. He is unflappable. You know, everybody always, you know, kind of says, married to for 18 years. He is unflappable. Very calm in a crisis. And she's just really trying to figure out what to make of this all. So Emily now is trying to figure out how to help Ivan. feel judged if whatever was happening to him, he really believed it. So for a day or two,

she's trying to help him on her own. And she's doing things like taking him to Costco because she thought, well, if we go to Costco, you know, it'll just be kind of like a normal Sunday afternoon and kind of get him out of this trauma that he's experiencing. But that completely backfires because he becomes convinced that the shoppers are kind of plainclothes agents that are watching him. It was torture. It was really torture for him. It was horrible. So finally, she, in desperation, you know, she calls a friend of hers who's a nurse who has mental health experience. I called her, and I talked about about it and we got maybe seven minutes

in the conversation. She's like, you need to get to the emergency department right now. Wow. And so I remember coming upstairs and I met John and Ben. I was like, listen,

we need to go to the hospital right now. And he was quite agreeable. He's like, oh yeah, okay. I was at this point where I was, when she said, we're going to the ER, I said, please get me somewhere. Yeah, no, I totally understand. It scared me so bad. Initially, I wasn't thinking about COVID.

I was just thinking, I'm losing my I was just thinking I'm losing my mind. And if I'm losing my mind, are my kids going to lose their mind when they're older? You know, is this something that I didn't know about? And so I was concerned about that. So when she said, let's go to the hospital, I was like, whatever you want to do, I'm on board. And so at that point, I just let her take over. So she drives Ivan to their local hospital emergency room, and the doctors do a brain scan to rule out a brain tumor, and they can't really quite diagnose it themselves.

You know, when I said, you know, I'm really worried that this is, something to do with the fact that he hasn't been sleeping well, so they send him home with sleeping scary. Things keep getting worse and worse. So Emily starts realizing, you know, they really need some serious psychiatric help for him. And finally, her nurse friend finds a space for Ivan

at a hospital in Seattle. And they get in the car and they start heading there. Emily checked me into ER and then she had to leave and they start heading there. You know, of course, because of COVID protocols, Emily isn't allowed to stay with him, so she has to leave. And while I was in there, they had do is they test him for COVID. Turns out that he is still COVID positive.

Hmm. How long had it been since his first COVID positive test? Yeah, it's been probably about three and a half weeks at this point. Is that unusual? It feels a little unusual that he would still be positive. It's not that unusual. What it means most likely is that not that he's still contagious, but he probably has, you know, some bit of virus hanging around still in his body. And there are a number of patients who have that.

So this is where the medical team starts to think, well, maybe these symptoms are COVID-related. At that point, they finally decided to move me into the mental health portion of the hospital. Okay. They move him into a psych ward. And he's there with some very, you know, severely psychiatrically ill patients. And they put him in a room, and he spends a lot of time looking out the window at a parking structure that's outside the window, and he is convinced that people in a car there are there to get him. And he's also crying a lot. He's weeping.

What I was experiencing was real in my mind. And there was a part of me that was thinking, this is who I am. And my career is over. My life is over. That was probably the lowest point of this whole thing. He knows something is happening to him that's not real, but it feels real. What's interesting is you seem to be describing a highly self-aware version of paranoia. Somebody

who knows that what's happening to him should not be happening, but it's still happening, and it's horrifying. Absolutely. And that is really very unusual for people who have psychosis, which is really what Ivan ends up being diagnosed with. You know, most people who are patients with psychosis either have some kind of chronic situation like schizophrenia, or sometimes they're, you know, elderly people who have it as a part of their dementia. or sometimes they're elderly people who have it as a part of their dementia. And most of the time, patients are in that kind of psychotic realm and aren't realizing that there's another reality out there. But Ivan, it was almost like double torture for him,

because not only is he having these hallucinations and delusions, Because not only is he having these hallucinations and delusions, but half of him is also saying, I'm having these horrible hallucinations and delusions. And why is this happening? So Ivan is in the hospital for eight days. He misses Christmas with his wife and three kids. And he's treated with an antipsychotic that gradually starts to kind of kick in. And then the other thing that he finds helpful is he sort of buries himself in books to kind of take him out of what was happening. All of that sort of starts to help him improve. Paranoia starts to lift and he is

better enough that shortly before New Year's, he's able to return home. I still have little twinges, mostly at night before I'm going to bed. And I had my first conversation with him five days later. conversation with him five days later. And it's clear at that point that Ivan and his medical team believe that whatever has been happening with him is connected to COVID. Definitely. And thank you so much. And yeah. Thanks, Pam. Take care.

Bye. Bye. We'll be right back. So, Pam, you have been writing about the long-term effects of COVID-19 for many, many months now. How common is the kind of story that Ivan has described to you? Well, Ivan's story is pretty uncommon, but it is not unique. There have been probably at this point dozens of cases of COVID-linked psychosis reported around the world and in this country.

And if you broaden that out to COVID-related brain effects and neurological effects, we are talking about a lot of people. The psychosis cases are really sort of an extreme version of a spectrum of different brain-related and neurological-related symptoms that many, many COVID survivors are experiencing. And what are those brain-, which is sort of a collection of symptoms that involve things like forgetting what you went into the room for, you know, not being able to organize things, not being able to do very, very simple tasks. I have written about a man who had gone to Paris just before getting COVID and this whirlwind trip with his partner and now cannot remember a single thing about his trip to Paris. He looks at pictures of him and his partner in front of the Mona Lisa and they're smiling and they're in front of the Eiffel Tower

and he says, gosh, it looks like we were really having a good time, but I can't remember anything about it. Wow. I've written about nurses who sort of forget what patients have told them the minute they leave the exam room. An operating room nurse who can't remember what a scalpel is called. So she says, give me that thing that we cut with. she says, you know, give me that thing that we cut with. That's brain fog. And that is really just one of the brain-related neurological issues that people are experiencing. I mean, you've got people who are having trouble smelling and tasting or having phantom smells. There's a lot of people with muscle pain or muscle weakness or headaches and that kind of thing. And studies are starting to come out now that are finding 20%, 30%, maybe more of COVID survivors are experiencing one or more of these kinds of neurological issues.

So it's going to be a problem for a long time. And what exactly do scientists believe is happening here? What is the virus doing to people to trigger these brain-related symptoms of the virus? So there are a few theories that I would say nobody knows exactly yet. But basically what scientists think is happening is not that the virus is getting into people's brains. Instead, what it seems to be doing is that when you get infected with COVID, your body responds to the virus. It tries to fight the virus, right? So you get an immune system response. And that immune system response generates inflammation. And what they think is

happening is that the body's inflammatory response is not just inflaming the body, but it can inflame what's going on in the brain as well. And depending on where in the brain that inflammation is happening, it can affect a particular function or set of functions that the brain is used to doing. So maybe it's your memory, maybe it's ability to do kind of multitasking. And in very extreme cases like Ivan's, it could have something to do with a psychiatric illness. Ivan's, it could have something to do with a psychiatric illness. Right. And so in that sense, people like Ivan become victims of their body's own natural defenses. Yeah, I think that's the best theory that doctors have come up with. And that theory is buttressed by not only what they're seeing with COVID, but for decades, there have been cases like this with other viruses from the 1918 flu pandemic to the SARS pandemic to MERS to meningitis. There are these cases that they

call sort of post-viral psychosis, and they're different than typical psychosis. And they affect often people like Ivan who don't seem to have any other mental health history. Pam, I recognize that this is all very new. So with that caveat, what is the understanding of how long a COVID-related brain symptom like what Ivan has been dealing with is expected to last?

Do we know? This is really uncharted territory. No, we don't know. You know, we've had a smattering of cases so far. Some of them have needed several weeks of treatment and they've tried several different kinds of medications and then some people have gotten better. And. And then... Hey, how are you? All right. How are you doing? There have been cases where people have had relapses. You know, I was okay for a little bit.

Yeah. And then I just came screaming back. Oh, man. And that, unfortunately, is what happened to Ivan. So it's... It's not...

It didn't switch off like a light switch like I thought it was going to. Yeah. By mid-January, he had told me that he was actually feeling 100% better, no paranoia. And his psychiatrist said he was doing really well. But in the second week of February, Ivan reached out to me. You know, I had a headline and it just triggered, triggered everything back.

Oh, wow. It was a headline and it just triggered. Oh. Triggered everything back. Oh, wow. It was a headline, you think? He had seen a headline about a police raid and just triggered everything. And he said... The paranoia came screaming back. Oh, man. I'm sorry. The paranoia came screaming back.

Hmm. We don't know what else to do at this point. Okay. Okay. And it's starting to become to do at this point. Okay. And it's starting to become a little overpowering. My rational mind is still attacked, but let's say it's weighted the other direction now, so. And the day after I talked to him, he was admitted to the psych ward and the hospital again.

That must have been really crushing to he and his wife. It was devastating. This relapse and this whole experience feels like such a powerful reminder that the coronavirus has only been with us for a year, and there just seems to be so much that we really don't know about. And as a result, it feels like Ivan and anybody who's this kind of an outlier

becomes this really horrible real-life case study that the rest of us are kind of poking and prodding and studying to try to understand. Yeah, I mean, there's just so much that we don't know. We don't know who gets these long-term symptoms and why. It's not just people with pre-existing conditions. It's not just people who are hospitalized. It's not just older people. We don't know how long these things last. We don't know what recovery looks like. And very importantly, we don't know what treatment works for many of these things. And for the brain-related issues, it's even more difficult because for people who are having, say, heart problems or lung issues

after COVID, those are serious and troublesome. But there are heart medications and there are lung medications, and there are a lot of things that we know that can help. But there's no pill that you can take to clear your brain fog, you know, and so it's really very complicated. which is that there are some people with long COVID who are reporting that after they get the COVID vaccine, their symptoms are improving and in some cases vanishing. And I've had several people tell me these wonderful stories of having like this terrible brain fog for months and months and they get vaccinated. And then, you know, a few days later, it's like, oh, what a beautiful morning, you know. Wow. One woman told me that it was like she was directing Sweeney Todd for months and now all of a sudden she's directing Oklahoma. So that's a very, very theatrical joke,

but she's gone from deep darkness to something brighter. Yeah, exactly. And it's wonderful. I think maybe we will find that some subset of people with long COVID are helped. So has Ivan gotten his vaccine? Is there any hope that that might do something for him? No, not yet. But I'm really happy to report that... Hey, how are you?

He's home again. Oh, I'm doing all right. How are you? He's feeling much better. He's not 100%, but he's getting there. I still don't have my sense of smell, so something is still damaged in my brain. And so once I recover my sense of smell, my guess is that that's when this will go away

and that my brain will be healthy and back to normal. Now, I don't know. That's just a layman's kind of guess. Yeah, yeah. I hope that's what I'm kind of looking forward to. Yeah, yeah, yeah, yeah. And he's just, you know, really hopeful that he'll be back to the old Ivan again. I'm tired of picking up the dog shit, too, so.

I can't smell it. I have to pick it up now. So, but, you know, there's something to look forward to, I guess, is what I'm saying. Yeah. But it's still, there still is that underlying fear that, fuck, I mean, how long is this going to take? You know? Pam, thank you very much. We appreciate it.

Thank you. We'll be right back. Here's what else you need to know today. Officials in at least 20 states have committed to opening vaccine appointments to all adults in March or April, ahead of President Biden's deadline of May 1st. In Ohio, for example, all adults will be allowed to seek shots starting March 29. In Connecticut, they can obtain the shots beginning April 5. Two states, Alaska and Mississippi, have already allowed all adults to book appointments.

At the same time, the U.S. Centers for Disease Control and Prevention has relaxed the six-foot distancing rule for elementary school students, saying they need only remain three feet apart in classrooms as long as everyone is wearing a mask. The new guidance is designed to make it easier to bring students back to school for in-person learning. and learning. Today's episode was produced by Austin Mitchell and Rochelle Banja. It was edited by Dave Shaw and Lisa Chow and engineered by Corey Schreppel. That's it for The Daily. I'm Michael Barbaro.

See you tomorrow.