The Cruel Reality of Long Covid-19

[0] From New York Times, I'm Michael Babaro.

[1] This is a daily.

[2] 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.

[3] My colleague, Pam Bellick, on a rare and cruel case of long COVID.

[4] It's Monday, March 22nd.

[5] We'll take your time, And wherever you want to start is fine with me. Pam, tell me about Ivan.

[6] Ivan Agerton is 50 years old.

[7] He lives on Bainbridge Island outside of Seattle with his wife Emily and their three children.

[8] He's a former Marine, and he has an incredibly cool job.

[9] He is a photographer, and he does a lot of adventure photography and a lot of expeditions.

[10] and his most recent expedition was last fall he spent two months in the Red Sea in a submarine doing photography and cinematography of all sorts of natural wonders and things that they were discovering down there.

[11] So he spent two months in a submarine in the middle of the pandemic.

[12] Pretty intense, yeah.

[13] The mission started, and then in order to get off the ship After the expedition was done, we had to test negative.

[14] The team took a lot of very strict COVID precautions, lots of testing.

[15] He tests negative as the expedition ends.

[16] And he has to take two or three flights from Saudi Arabia to get back to Seattle.

[17] And he gets home a little bit before Thanksgiving.

[18] And he goes and gets COVID tested.

[19] Then I had a positive test.

[20] Turns out that he is positive.

[21] So I quarantined in my bedroom.

[22] Yeah.

[23] Which was kind of nice because I was getting room service for however many days.

[24] He doesn't have a very serious case.

[25] I lost my sense of smell.

[26] Mild respiratory symptoms.

[27] He loses a sense of smell.

[28] So this is all sounding pretty routine and pretty run -of -the -mill as COVID infections go.

[29] Right, right.

[30] And in fact, it sounds like he's pretty lucky.

[31] So then...

[32] And then just a few.

[33] A few days later, he gets kind of an ordinary spam phone call on his cell phone.

[34] One of those things where we pick it up and then they instantly hang up.

[35] Okay.

[36] And it was like a late switch.

[37] It happened this fast.

[38] This intense paranoia hit me. And I was like, what's happening?

[39] Who is this?

[40] For some reason, this triggered sort of a cascade of paranoia and delusions.

[41] Hmm.

[42] It got worse.

[43] 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.

[44] And then I started thinking that people were listening to my phone.

[45] And so I downloaded a police scanner.

[46] And I started listening to that.

[47] And I was convinced that they were, hit my dog out for a walk.

[48] And as I was walking him, I had this police scanner.

[49] And I hear someone say, oh, you.

[50] He's out walking his dog right now.

[51] He's on his way back.

[52] So it was that specific.

[53] Wow.

[54] And I didn't tell my wife, out sleep.

[55] Every noise that I heard, I would get up out of bed, I would peer out of this little window in our bedroom because I didn't know what was happening.

[56] Wow, he's really starting to kind of unravel.

[57] Yeah.

[58] Grabbed my wife.

[59] 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.

[60] I know this is going to sound crazy following me this giant whole not even knowing how to process what was happening Emily is just stunned she's shocked you don't think you're you know your partner is going to yeah this is a man she's been married to for 18 years he is unfabable and you know everybody always you know kind of said I've been a person you go to in a crisis because he's just So rational, he's so calm.

[61] He's a form of a way, and so he has this training.

[62] Very calm in a crisis, and she's just really trying to figure out what to make of this all.

[63] So to have your person, that's great in a crisis, like experiencing a crisis.

[64] That was, I mean, for me, just this, you know, tone and fear.

[65] So Emily now is trying to figure out how to help Ivan.

[66] He wouldn't want him to feel judged if whatever was happening to him.

[67] He really believed it.

[68] 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.

[69] But that completely backfires because he becomes convinced that the shoppers are kind of plainclothes agents that are watching him.

[70] And it was torture.

[71] It was really torture for him.

[72] It was horrible.

[73] So finally, she, in desperation, you know, she calls a friend of hers who's a nurse who has mental health experience.

[74] I called her, and I talked about it, and we got maybe seven minutes in the conversation.

[75] She's like, you need to get to the emergency department right now.

[76] Wow.

[77] And so I remember coming upstairs, and I had gone and Ben, I was like, listen, we need to go to the hospital right now.

[78] And he was quite a great boy.

[79] He's like, oh, yeah, okay.

[80] Yeah, no, I totally, I totally understand.

[81] I'm on board.

[82] And so at that point, I just...

[83] 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.

[84] You know, when I said, you know, I'm really worried that this is, you know, COVID -related.

[85] He's like, oh, not everything's COVID.

[86] They're going to write again.

[87] I think he really needs to sleep.

[88] They're assuming that it may have something to do with the fact that he hasn't been sleeping well, so they send him home with sleeping pills.

[89] Those two days?

[90] Yeah.

[91] So scary.

[92] Things keep getting worse and worse.

[93] So Emily starts realizing, you know, they really need some serious psychiatric help for him.

[94] And finally, her nurse friend finds a space for Ivan at a hospital.

[95] in Seattle, and they get in the car, and they start heading there.

[96] Emily checked me into the ER, and then she had to leave because she couldn't go.

[97] You know, of course, because of COVID protocols, Emily isn't allowed to stay with him, so she has to leave.

[98] And so I met with a social worker, I met with a doctor, and they decided that the patient was definitely something that they should do, and while I was in there, they had actually taken a nose swab for COVID.

[99] Okay.

[100] One of the first things that they do is they test him for COVID.

[101] But they finally came back.

[102] It was he tested positive for COVID.

[103] Turns out that he is still COVID positive.

[104] Hmm.

[105] How long had it been since his first COVID positive test?

[106] Yeah, it's been probably about three and a half weeks at this point.

[107] Is that unusual?

[108] It feels a little unusual, that he would still be positive.

[109] It's not that unusual.

[110] What it means most likely is that not that.

[111] he's still contagious, but he probably has, you know, some bit of virus hanging around still in his body.

[112] And there are a number of patients who have that.

[113] So this is where the medical team starts to think, well, maybe these symptoms are COVID -related.

[114] At that point, they finally decided to move me into the mental health.

[115] They move him into a psych ward.

[116] And he's there with some very, you know, a 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.

[117] And he's also crying a lot.

[118] He's weeping.

[119] What I was experiencing was real.

[120] He knows something is happening to him that's not real, but it feels real.

[121] 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.

[122] 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.

[123] And most of the time, patients are in that kind of psychotic realm and aren't realizing that there's another reality out there.

[124] But Ivan, it was almost like double torture for him 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.

[125] And why is this happening?

[126] So Ivan is in the hospital for eight days.

[127] He misses Christmas with his wife and three kids.

[128] And he's treated with an antipsychotic that gradually starts to kind of kick in.

[129] And then the other thing that he finds helpful is that he sort of buries himself in books to kind of take him out of what was happening.

[130] All of that sort of starts to help him improve.

[131] Paranoir starts to lift, and he is better enough that shortly before New Year's able to return home.

[132] I still have little twinges, mostly at night before I'm going to bed.

[133] And I had my first conversation with him.

[134] five days later.

[135] But I'm probably 85 % of that's normal as.

[136] 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.

[137] Definitely.

[138] And thank you so much.

[139] And yeah.

[140] Thanks, Pam.

[141] Take care.

[142] Bye.

[143] Bye.

[144] We'll be right back.

[145] So Pam, you have been writing about the long -term effects of COVID -19.

[146] for many, many months now.

[147] How common is the kind of story that Ivan has described to you?

[148] Well, Ivan's story is pretty uncommon, but it is not unique.

[149] There have been probably at this point dozens of cases of COVID -linked psychosis reported around the world and in this country.

[150] And if you broaden that out to COVID -related brain effects and neurological effects, we'll be a lot of COVID -related brain effects and neurological are talking about a lot of people.

[151] 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.

[152] And what are those brain -related symptoms?

[153] Describe those?

[154] So there have been a lot of reports of something that people are calling brain fog, 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.

[155] 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.

[156] 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.

[157] I've written about, you know, 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, you know, give me that thing that we cut with, that's brain.

[158] dog.

[159] And that is really just one of the brain -related neurological issues that people are experiencing.

[160] I mean, you've got people who are having trouble smelling and tasting or having phantom smells.

[161] There's a lot of people with muscle pain or muscle weakness or headaches and that kind of thing.

[162] And studies are starting to come out now that are finding 20%, 30%, maybe more of COVID survivors.

[163] are experiencing one or more of these kinds of neurological issues.

[164] So it's going to be a problem for a long time.

[165] And what exactly do scientists believe is happening here?

[166] What is the virus doing to people to trigger these brain -related symptoms of the virus?

[167] So there are a few theories that I would say nobody knows exactly yet.

[168] but basically what scientists think is happening is not that the virus is getting into people's brains.

[169] Instead, what it seems to be doing is that when you get infected with COVID, your body responds to the virus.

[170] It tries to fight the virus, right?

[171] So you get an immune system response, and that immune system response generates inflammation.

[172] And what they think is happening is that the body's inflammatory response is not just inflaming the body, but it can inflame, you know, what's going on in the brain as well.

[173] 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.

[174] So maybe it's your memory, maybe it's ability to do it.

[175] kind of multitasking.

[176] And in very extreme cases like Ivan's, it could have something to do with a psychiatric illness.

[177] Right.

[178] And so in that sense, people like Ivan become victims of their body's own natural defenses.

[179] Yeah, I think that's the best theory that doctors have come up with.

[180] 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.

[181] And they're different than typical psychosis.

[182] And they affect often people like Ivan who don't seem to have any other mental health history.

[183] Pam, I recognize that this is all very new.

[184] 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?

[185] Do we know?

[186] This is really uncharted territory.

[187] No, we don't know.

[188] You know, we've had a smattering of cases so far.

[189] 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.

[190] And then Hey, how are you?

[191] All right, how are you doing?

[192] There have been cases where people have had relapses.

[193] You know, I was it okay for a little bit.

[194] Yeah.

[195] And it just came and screaming back, so.

[196] Oh, man. And that, unfortunately, is what happened to Ivan.

[197] Which, like, that was an idea.

[198] Yeah.

[199] By mid -January, he had told me that he was actually feeling 100 % better, no paranoia.

[200] And his psychiatrist said he was doing really well.

[201] but in the second week of February, Ivan reached out to me. It was a headline, you think?

[202] He had seen a headline about a police raid and just triggered everything, and he said, The paranoia came screaming back.

[203] Oh, man, I'm sorry.

[204] The paranoia came screaming back.

[205] We don't know what else to do at this point.

[206] Okay, okay.

[207] And it's starting to become a little overpowering.

[208] And the day after I talked to him, he was, to the psych ward and the hospital again.

[209] That must have been really crushing to he and his wife.

[210] It was devastating.

[211] 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 it.

[212] And as a result, it feels like Ivan...

[213] 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.

[214] Yeah.

[215] I mean, there's just so much that we don't know.

[216] We don't know who gets these long -term symptoms and why.

[217] You know, it's not just people with pre -existing conditions.

[218] It's not just people who are hospitalized.

[219] It's not just older people.

[220] We don't know how long these things last.

[221] We don't know.

[222] recovery looks like.

[223] And very importantly, we don't know what treatment works for many of these things.

[224] 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.

[225] 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.

[226] There's been one kind of glimmer of potential hope in this area, 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.

[227] 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.

[228] Yeah, exactly.

[229] And it's wonderful.

[230] I think maybe we will find that some subset of people with long COVID are helped.

[231] So has Ivan gotten his vaccine?

[232] Is there any hope that that might do something for him?

[233] No, not yet, but I'm really happy to report that...

[234] I am.

[235] Hey, how are you?

[236] He's home again.

[237] Oh, I'm doing all right.

[238] How are you?

[239] Okay.

[240] He's feeling much better.

[241] He's not 100%, but he's getting there.

[242] I still don't have my sense of smell.

[243] So something is still damaged in my brain.

[244] And so once I recover my sense of smell, my guess is that that's when this will go away.

[245] And that my brain will be healthy and back to normal.

[246] Now, I don't know.

[247] That's just a layman's kind of a guess.

[248] Yeah, yeah.

[249] Yeah.

[250] You know, I hope that's what I'm kind of looking forward to it.

[251] Yeah, yeah, yeah, yeah.

[252] And he's just, you know, really hopeful that he'll be back to the old Ivan again.

[253] I'm tired of picking up the dog shit, too, so I can't smell it.

[254] I have to pick it up now.

[255] So, but, you know, there's something to look forward to, I guess, is what I'm saying.

[256] Yeah.

[257] But it's still, there still is that underlying fear that fuck.

[258] I mean, how long is this going to day, you know?

[259] Pam, thank you very much.

[260] We appreciate it.

[261] Thank you.

[262] We'll be right back.

[263] Here's what else you need to know today.

[264] 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.

[265] In Ohio, for example, all adults will be allowed to seek shots starting March 29th.

[266] In Connecticut, they can obtain the shots beginning April 5th.

[267] Two states, Alaska and Mississippi, have already allowed all adults to book appointments.

[268] 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.

[269] The new guidance is designed to make it easier to bring students back to school for in -person learning.

[270] Today's episode was produced by Austin Mitchell and Rochelle Bonja.

[271] It was edited by Dave Shaw and Lisa Chow and engineered by Corey Shreppel.

[272] That's it for the daily.

[273] I'm Michael Bavarro.

[274] See you tomorrow.