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Speaker 1: Hi everyone. I'm Katie Couric, and this is next question.

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Speaker 1: I think in the back of my mind, I always

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Speaker 1: knew I hadn't fully recovered. There have been symptoms that

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Speaker 1: I had in the beginning that have never gone away,

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Speaker 1: And now that it's been over a year, I look

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Speaker 1: back and I started sort of see these patterns. No

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Speaker 1: one was talking about stuff like that, so it didn't

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Speaker 1: seem like it was COVID related at all. Honestly, I

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Speaker 1: kept very copious notes because I was afraid and I

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Speaker 1: wanted help, and they assured me that nothing was wrong.

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Speaker 1: It's not just a handful of symptoms. We're talking it out.

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Speaker 1: We're talking about it messes up your entire body, Okay, symptoms, nausea, headache,

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Speaker 1: head It feels like sometimes there's twenty rubber bands, tight

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Speaker 1: rubber bands around my skull at any time. Feeling of

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Speaker 1: water dripping on leg sore muscles, fatigue from marathons. In

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Speaker 1: my life now it's kind of like walking the dog

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Speaker 1: around the block is like a big ask having struggles

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Speaker 1: some days walking from my living room so to the

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Speaker 1: hallway restaurant, I couldn't even think without becoming very tired.

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Speaker 1: I felt like I have been drugged, honestly, gas, ro

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Speaker 1: intestinal issues, hives, lack of ability to concentrate, chicken skin,

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Speaker 1: memory lapses, white lost hearing for a couple of months,

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Speaker 1: tingling on back, soreness, and back. I've experienced tendus tenitus,

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Speaker 1: and that's like a ring in your ears, ringing in

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Speaker 1: my ears. It was more like a screeching. It was

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Speaker 1: more like a like a storm siren mixed with the

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Speaker 1: static from TV's back in the nineties. If you were

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Speaker 1: to put your hand on a train track and if

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Speaker 1: you could sense that, just that feeling, and then have

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Speaker 1: that run through your entire body. It feels like if

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Speaker 1: my spine was like a hollow metal pole and someone

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Speaker 1: took a metal baseball bat and wept it like that zlink,

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Speaker 1: that reverberating metal sound. That's what the pain feels like

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Speaker 1: in my spine. One day, I was actually screaming. I

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Speaker 1: was like, my feet are on fire and I'm screaming.

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Speaker 1: Clumps of my hair were falling out, random raising, insomnia, hypersomnia,

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Speaker 1: where to go, spasms, h pain, vision issues, cold extremities,

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Speaker 1: temperature regulation, confusion, brain fog, comprehension. I can't stand the

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Speaker 1: name brain fog. I think it's putting it very mildly.

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Speaker 1: It's not just forgetfulness. For all intents and purposes, I

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Speaker 1: have dementia. I don't know what's going to be gone next.

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Speaker 1: I have forgotten my phone number, I have forgotten my age.

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Speaker 1: I have not been able to figure out where I live.

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Speaker 1: I'd spent a long time thinking, Okay, this is just

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Speaker 1: in xiety. After all, that's what the doctors keep telling me,

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Speaker 1: that's what the providers keep telling me. So let's buckle

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Speaker 1: down work. We've got bills. Tokay. It just never gets better.

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Speaker 1: It just it just never gets better. Nothing ever changes.

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Speaker 1: It's like ground on set, and it has changed my life.

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Speaker 1: It has turned it upside down. This is a disability.

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Speaker 1: Blong COVID is a disability. We're trying to find, not

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Speaker 1: a sense of normalcy, but we're trying to find ways

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Speaker 1: to manage our new lives, our new bodies. You need

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Speaker 1: to take some time to grieve the life that you

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Speaker 1: thought you were going to live. And I can't verbally

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Speaker 1: express how absolutely soul crushing all of this was to experience.

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Speaker 1: The voices you just heard are from people suffering from

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Speaker 1: long COVID, people who generously shared their stories with us.

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Speaker 1: My name is Janine Hayes, Jack Guest, Lisa Fisher, deep

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Speaker 1: as saying, Shamir L. Smith, Rebecca Hogan, and I have

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Speaker 1: been experiencing I've been living with and all of us

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Speaker 1: are living with long long COVID, long post acute COVID CENTRUMP.

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Speaker 1: Long COVID goes by a lot of different names, long

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Speaker 1: haul COVID, post COVID nineteen or the more formal pasque

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Speaker 1: post acute sequel I of stars COVID two. Even though

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Speaker 1: COVID nineteen has been with us for more than two years,

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Speaker 1: infecting more than eighty million Americans and killing almost one

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Speaker 1: million people in this country alone, long COVID remains a mystery,

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Speaker 1: But what is becoming increasingly clear is is that an

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Speaker 1: alarming number of people are suffering from it, and it's

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Speaker 1: greater impact on individuals, the health system, the labor force,

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Speaker 1: and the economy can no longer be ignored. I believe

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Speaker 1: this long COVID will be sort of a parallel pandemic

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Speaker 1: of people with disabilities and need for a lot of

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Speaker 1: medical attention. Who's going to have a hard time getting

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Speaker 1: those things today? Our next question understanding long COVID, what

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Speaker 1: it is what it can do to the body who's affected,

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Speaker 1: and how it's up ending countless lives. My name is Kikasaki.

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Speaker 1: I'm a professor of immunobiology at the Yale University School

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Speaker 1: of Medicine. My name is Harling croum Holtz. I'm a

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Speaker 1: cardiologist at Yale University, and I'm the director of the

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Speaker 1: Yale Center for Outcomes Research and Evaluation. It's an interesting

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Speaker 1: question how I got involved in long COVID. I I'm

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Speaker 1: a cardiologist, so it's not where I would naturally be.

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Speaker 1: But in the time of the pandemic, all of us

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Speaker 1: with skills and researched and with interest in trying to

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Speaker 1: make a contribution came together and applied ourselves at first

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Speaker 1: to the cute phases of the pandemic, and then over

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Speaker 1: time I began to see that that there was a

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Speaker 1: very important area here that was largely neglected. That was

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Speaker 1: this this long tale of COVID people who were suffering

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Speaker 1: after having an episode of COVID, and it never seemed

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Speaker 1: to end, that it went on for for quite a

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Speaker 1: long time and caused quite a lot of disability, And

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Speaker 1: so I was I was drawn to do it. I

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Speaker 1: had been working with the patient groups, and they had

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Speaker 1: been raising issues and I've been listening, and I had

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Speaker 1: the great fortune to start working with the Kiko Iwasaki,

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Speaker 1: world renowned immunologists, and we began to think together how

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Speaker 1: we might be able to address some of these questions.

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Speaker 1: Let's start with the basics. What is long COVID? How

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Speaker 1: is it being defined? Long COVID describes a state of

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Speaker 1: a person with lingering symptoms OFF or you've gotten acute

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Speaker 1: phase of COVID, either severe, moderate, or mild disease. In

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Speaker 1: some cases, a symptomatic COVID can turn into long COVID,

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Speaker 1: and it's essentially people suffering from long term symptoms for

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Speaker 1: at least four weeks after the infection um UH. And

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Speaker 1: that's the CDC guideline and the w h O guideline

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Speaker 1: is similar, but it's slightly different in saying that within

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Speaker 1: the first three months of COVID you basically suffer from

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Speaker 1: long term symptoms as lasting over two months. But in

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Speaker 1: both cases the definition includes UH longevity of the disease

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Speaker 1: as well as what happens after the acute phase of

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Speaker 1: the COVID. While long COVID feels new, it's actually not

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Speaker 1: the first virus that's caused lingering symptoms in some people,

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Speaker 1: the bowl of virus, the original stars virus, epstein bar virus.

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Speaker 1: These are all known to trigger long term symptoms in

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Speaker 1: some survivors. Even flu can cause long flu. However, with

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Speaker 1: the COVID, we are seeing, you know, millions of people

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Speaker 1: infected at once and seeing large proportion of these people

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Speaker 1: still having um long COVID afterwards. And so this really

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Speaker 1: has shifted the way we think about acute viral infections

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Speaker 1: in that there's this huge possibility of causing debilitating disease

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Speaker 1: even after so called recovery from an acute infection. You've

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Speaker 1: already heard some of the symptoms associated with long COVID,

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Speaker 1: but the sheer number of those symptoms, more than two hundred,

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Speaker 1: is astounding. There is a great diversity of symptoms that

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Speaker 1: people are manifesting from this long COVID, and and it's

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Speaker 1: hard to say whether one is more important than the

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Speaker 1: other because it depends on the individual. And so we're

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Speaker 1: hearing a lot about rainfall, we're hearing a lot about fatigue,

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Speaker 1: but we're also hearing a lot about other things that

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Speaker 1: that are sort of we wouldn't really associate with with

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Speaker 1: a post viral syndrome. I mean ringing in the ears.

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Speaker 1: Dentatis is something we hear about. We hear about gastro

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Speaker 1: intestinal issues. We are about changes in menstrual periods. We

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Speaker 1: hear about um the tingling in the vibrations, we hear

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Speaker 1: about the tremors, muscular skeletal stuff. We hear a lot

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Speaker 1: of neurologic issues. And I've had so many people say

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Speaker 1: to me, is there anyone else like me? You know,

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Speaker 1: people are feeling this great sense of isolation. They're feeling

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Speaker 1: scared and wondering if they're the only ones in the

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Speaker 1: world who are experiencing this, because when they go in

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Speaker 1: to see it a healthcare professional, maybe they're getting a

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Speaker 1: reaction like wow, I've never seen this before, and they're wondering,

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Speaker 1: am I alone in this? And then that's what makes

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Speaker 1: them wonder maybe it's in my head. And yet when

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Speaker 1: we start seeing that there are many people who haven't

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Speaker 1: never met each other but are exhibiting the exact same thing,

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Speaker 1: that's making us think maybe maybe you're not alone. You know.

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Speaker 1: In fact, we say that more certainly, you know you're

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Speaker 1: not alone. By some estimates, long COVID has pushed as

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Speaker 1: many as one point six million workers out of the

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Speaker 1: labor force, and we still don't have a clear idea

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Speaker 1: just how many people are suffering. One study released by

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Speaker 1: the Journal of the American Medical Association late last year

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Speaker 1: suggests that at least half of people who survived COVID

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Speaker 1: nineteen face linkering symptoms, and the range of experiences is

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Speaker 1: all over the map. Some people are so severely affected

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Speaker 1: that they cannot operate normally and that they cannot return

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Speaker 1: to work. Some people are bit bound. Others have multiple

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Speaker 1: symptoms but they are still able to go to work,

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Speaker 1: um possibly not the same extent that they were doing before.

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Speaker 1: And others have just a limited number of symptoms but

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Speaker 1: they're lingering for extended time. Pierre, You, so the severity

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Speaker 1: differs dramatically between people. Researchers have started to unlock a

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Speaker 1: few clues about long COVID, like white affects some people

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Speaker 1: but not others. So there are at least two, if

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Speaker 1: not for, different hypotheses that explain long COVID. One of

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Speaker 1: the hypothesis is that there may be persistent virus or

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Speaker 1: remnants of virus such as protein and urnate from the

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Speaker 1: virus that lingers in these patients, and when those things

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Speaker 1: are not cleared properly, then you would develop chronic inflammation

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Speaker 1: as a result, and that could be driving the long

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Speaker 1: COVID disease. The second hypothesis is autoimmune disease. That an

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Speaker 1: acute viral infection like source covid too could trigger autoimmune

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Speaker 1: disease in people. And autoimmune disease essentially means that your

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Speaker 1: own immune system starts attacking your own proteins and molecules UM,

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Speaker 1: and when that happens, it's very difficult to stop ALLO

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Speaker 1: I mean reactivation activation of these cells, and therefore that

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Speaker 1: could be driving long term consequences UM. There are other

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Speaker 1: hypotheses such as reactivation of latent viruses that we all

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Speaker 1: have in our body that's usually dormant, but as a

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Speaker 1: result of covid UH, those viruses reactivate and cause disease,

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Speaker 1: such as um epstein bar virus or other herpes virus

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Speaker 1: family members. UM. There's also a possibility that your gut microbiome,

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Speaker 1: the bacteria that live in the gut or in other areas,

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Speaker 1: may also shift as a result of the COVID and

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Speaker 1: that could trigger some inflammation as well. And then there's

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Speaker 1: also this UH tissue damage, especially from people who have

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Speaker 1: had severe COVID, that there is significant damage that occur

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Speaker 1: in various tissues, including the lung and other places that

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Speaker 1: may be very difficult to repair, and that's causing a

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Speaker 1: long COVID. So there are many different hypotheses UM, all

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Speaker 1: of which currently have UM emerging supporting evidence. For the

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Speaker 1: good news is that understanding what causes long COVID will

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Speaker 1: eventually help treat it. The treatment of different symptoms for

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Speaker 1: a long COVID is a big challenge um first of all,

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Speaker 1: because there are so many symptoms that people report at

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Speaker 1: the same time, so the treatment would differ dramatically depending

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Speaker 1: on what the person is suffering from. And that's why

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Speaker 1: we are really trying to understand the underlying mechanism of

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Speaker 1: disease so we can properly first of all, classify the

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Speaker 1: patients into who's suffering from what causes and then we

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Speaker 1: can establish a clinical trial to test different drugs that

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Speaker 1: may work against that particular cause sitive agent. I think

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Speaker 1: the key thing is now is just to admit that

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Speaker 1: one day ignorance to that there's a wide variety of symptoms.

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Speaker 1: Some people have taken this wide variety of symptoms and

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Speaker 1: used it to suggest there is no common long COVID

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Speaker 1: that this is this is evans. I take it as

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Speaker 1: evidence that maybe there are specific we call him clusters,

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Speaker 1: you know, groupings of people that are manifesting a sort

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Speaker 1: of similar response. And it may be that the underlying mechanism,

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Speaker 1: the thing that's causing it, is common, and that may

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Speaker 1: end up triggering us, giving us clues to what we

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Speaker 1: need to do to help them feel better. But the next,

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Speaker 1: a proximate step is to bring together this large community,

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Speaker 1: bring together lots of people and then understand who's like

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Speaker 1: each other, and then connect them and then see again

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Speaker 1: we can share wisdom, learn from each other, and in

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Speaker 1: this partnership with the patients as participants, as true teammates

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Speaker 1: in the research, begin to start to make progress in

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Speaker 1: ways that we haven't been able to do before. Coming

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Speaker 1: up the internal vibrations like a earthquake inside your body.

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Speaker 1: What is it like to live with long covid? If

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Speaker 1: the air purifier wasn't like all the way up, I

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Speaker 1: would get swelling in my throat. If I wasn't eating

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Speaker 1: this right, this particular carrot that we would order from target,

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Speaker 1: I would get swelling in my throat. We spotlight the

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Speaker 1: upended lives of a few long haulers. My lowest physical

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Speaker 1: moment was loan COVID. It would be difficult to describe

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Speaker 1: because I call it the Corona coaster. It goes up

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Speaker 1: and down. Lisa Fisher is a thirty eight year old

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Speaker 1: long hauler living in Houston, Texas. She first contracted COVID

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Speaker 1: in June of with respiratory symptoms so bad in the

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Speaker 1: first month she went to the e R three times.

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Speaker 1: The third e ER visit led to my hospitalization in

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Speaker 1: a COVID I See You, and that was on July one.

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Speaker 1: That was five weeks after my initial presentation of symptoms.

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Speaker 1: And I was in the I See You that first

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Speaker 1: week and then went into a rehab hospital first several months.

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Speaker 1: After ten days into her rehab stet, a whole range

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Speaker 1: of debilitating neurological symptoms took hold of Liz's body. Heavily

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Speaker 1: Parkinsonian like tremors which started in my right leg and

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Speaker 1: then moved throughout my body. In addition, I got the

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Speaker 1: internal tremors or vibrations that people speak of neuropathy in

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Speaker 1: all four stages um and I developed a stutter and

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Speaker 1: lost my speech, and that's when I lost my ability

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Speaker 1: to walk. The internal vibrations are like a earthquake inside

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Speaker 1: your body, or if it's a better visualization, if you

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Speaker 1: were to put your hand on a train track and

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Speaker 1: if you could sense that, just that feeling and then

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Speaker 1: have that run through your entire body. And then there's

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Speaker 1: also the feeling of a cell phone buzzing, and I

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Speaker 1: get that like almost as if it was implanted into

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Speaker 1: my bone, and that just kind of like goes on

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Speaker 1: and off. And then there's actual tremor of the hand,

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Speaker 1: Like right now, it's kind of light, but that's more

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Speaker 1: of like a Parkinsonian tremor, and for someone who gets

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Speaker 1: slow blood sugar, uh, it may be similar to experiencing that,

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Speaker 1: but you can't get out of it. My life before

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Speaker 1: COVID was completely different. I was a time flight attendant,

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Speaker 1: international flight attendant, part time you open instructor. I lived

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Speaker 1: a very active life. I traveled around the world. I

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Speaker 1: was social with my friends. I was very independent. Um, yeah,

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Speaker 1: it's very very different my life now since COVID is

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Speaker 1: very dependent. My mother had to move in from Ohio,

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Speaker 1: which we thought for a couple of months, and she's

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Speaker 1: still here. And she no longer works. I'm unable to drive.

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Speaker 1: I don't cook for myself. I don't do my own

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Speaker 1: laundry or really clean for myself. Yet it just takes

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Speaker 1: too much energy and I haven't been able to do

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Speaker 1: it all with my tremors. Currently, I go to rehab

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Speaker 1: five days the weeks. Let's see, I have truth very

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Speaker 1: I think four different types of rehab, and then I

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Speaker 1: see a nutritionist. UM, I have a strength program to

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Speaker 1: still build different types of muscles back. I am in

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Speaker 1: the care of ten different specialists. I try to go

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Speaker 1: to yoga. I'm that's very important part of my life.

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Speaker 1: It just kind of gives me, keeps me centered and grounded,

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Speaker 1: and then I try to do advocacy and research and rest.

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Speaker 1: Eating is probably one of the most challenging things that

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Speaker 1: I do in my day. The amount of energy that

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Speaker 1: it takes to just eat and then digest and process

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Speaker 1: the food a lot of times is more energy than

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Speaker 1: I get from the food. So I have to have

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Speaker 1: small meals throughout the day, and a lot of times

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Speaker 1: it will like a half a bowl of oatmeal will

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Speaker 1: take me two hours and I may fall asleep eating it.

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Speaker 1: The financial burden has been stressful. I was blessed in

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Speaker 1: that when I was in the hospital, my friends, family

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Speaker 1: and colleagues had started to go fund me, which kept

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Speaker 1: me afloat and paying my rent and utilities while I

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Speaker 1: was in the hospital, and uh, my doctors and all

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Speaker 1: of the medical staff while I was in the rehab

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Speaker 1: hospital urged me to apply for disability, which I struggled

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Speaker 1: with that concept at the time, but later in did

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Speaker 1: apply for disability and was approved. In a lot of

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Speaker 1: the other payments are coverages on like the affordable healthcare

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Speaker 1: don't cover a lot of my specialists and medications and

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Speaker 1: not so my family has had to dip into uh,

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Speaker 1: you know, collective our retirement savings, UM, things like that.

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Speaker 1: And you know, my mom and I live in a

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Speaker 1: one bedroom apartment together. It's just we we make do

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Speaker 1: we The family decided together as a collective we would

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Speaker 1: do whatever it takes. One of the therapists in my

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Speaker 1: rehab hospital said that you need to take some time

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Speaker 1: to grieve the life that you thought you were going

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Speaker 1: to live, and that was a very hard thing to hear,

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Speaker 1: but in a way a necessary one. I was very

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Speaker 1: angry about having long haul COVID, especially in the beginning.

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Speaker 1: I was just so upset, and I just kept being like,

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Speaker 1: why is this happening? Like why did this happen to me? Like?

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Speaker 1: Why am I not better? This is Janine Hayes, a

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Speaker 1: forty three year old long hauler. Janine and her husband

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Speaker 1: Brian Mason, started out the pandemic living in Brooklyn in

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Speaker 1: March of Brian was the first to get COVID. While

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Speaker 1: Brian suffered a scary bout of double pneumonia, Jenny's initial

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Speaker 1: COVID symptoms barely registered. We were really getting him better

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Speaker 1: than I started to get these just frange allergies. After

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Speaker 1: having what felt like a forty eight hour stomach bug,

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Speaker 1: it was really let me. Three to four weeks later

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Speaker 1: that I just started to get like the burning feet, um,

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Speaker 1: breaking out in hives, breaking out in rashes. Um. You know,

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Speaker 1: I would eat something, my throat would swell. I was

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Speaker 1: just becoming more and more allergic to our apartment, just

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Speaker 1: everything in it. UM was just suddenly like a mine

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Speaker 1: field of allergy attacks. By August of he had to

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Speaker 1: give me the EPI pens because I ended up going

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Speaker 1: into full anaphylaxis two days in a row um just

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Speaker 1: after eating lunch Um, it was as if I was

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Speaker 1: allergic to the entire place, Like I'd have to wear

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Speaker 1: a mask inside all day. We had to always have

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Speaker 1: like the air conditioning like on full blast, because for

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Speaker 1: some reason, Um, if the apartment or if the place

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Speaker 1: was too warm, I would get swelling in my throat. Um,

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Speaker 1: if the air purifier wasn't like all the way up,

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00:22:53,720 --> 00:22:55,600
Speaker 1: I would get swelling in my throat. If I wasn't

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Speaker 1: eating this right, this particular carrot that we would order

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00:22:58,480 --> 00:23:01,640
Speaker 1: from Target, I would get swelling in my throat. Our

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Speaker 1: doctors were trying to help as much as possible. They were,

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Speaker 1: like every doctor at that time, learning with us. So

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Speaker 1: I contacted the Mayo clinic. UM. I wrote them my story,

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00:23:12,960 --> 00:23:14,919
Speaker 1: and I was like, can I get in to the

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Speaker 1: Mayo Clinic? This is what's happening to me. I sent

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Speaker 1: a letter to Johns Hopkins, because again there was another

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00:23:22,400 --> 00:23:24,399
Speaker 1: place I knew had been doing it, being at the

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Speaker 1: forefront of public health. And then both of them send

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Speaker 1: a rejection letter, We're not able to accept your case.

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Speaker 1: And then it was in like in the fall, that

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Speaker 1: our doctor had heard that Mount sign I was starting

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Speaker 1: a post COVID care center. UM and she said, Okay,

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Speaker 1: this is where you guys need to get in. We

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00:23:43,640 --> 00:23:47,119
Speaker 1: were really excited. We called and they were like, the

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Speaker 1: first appointment is March three. So for those six months,

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Speaker 1: six or seven months, we were sort of on our own.

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Speaker 1: That's Brian. Brian took over, as you means, full time caregiver,

359
00:24:01,200 --> 00:24:05,200
Speaker 1: helping her twenty four hours a day while also researching

360
00:24:05,280 --> 00:24:08,760
Speaker 1: and recruiting a team of doctors to address her wide

361
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Speaker 1: ranging symptoms from the allergies to neurological issues to cardiac concerns.

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Speaker 1: And so those months were a process of basically interviewing

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Speaker 1: and vetting doctors and saying, Okay, UM, here's our situation, Um,

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Speaker 1: are you interested in being a part of this, because

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Speaker 1: it's it's a it's a fairly it's a dire situation.

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Speaker 1: We're trying, basically, at this point, every day to keep

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Speaker 1: her alive and every night, you know, I'm basically staying

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Speaker 1: up all night making sure that she's awake, she's breathing,

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Speaker 1: that she's making it through the night. It was a

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Speaker 1: learning course for me, and I guess in medical advocacy,

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00:24:43,680 --> 00:24:46,879
Speaker 1: we're very open about saying we had a fantastic medical experience,

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Speaker 1: specifically as African Americans, but also understanding that that is

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Speaker 1: not the case always for African Americans and saying that

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Speaker 1: that was always not even the case for us. Those

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Speaker 1: instances did pop up where you know, we received a

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Speaker 1: certain level of treatment or certain reactions from doctors that

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00:25:03,840 --> 00:25:05,719
Speaker 1: was clear We're clearly based on our race. And in

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Speaker 1: those instances we said, well that's fine, thank you, know,

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Speaker 1: thank you. We're going to you know, work with somebody

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Speaker 1: who's going to work with us. And I think Brian

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00:25:12,480 --> 00:25:14,880
Speaker 1: always is so like gracious. He always says, like we

382
00:25:14,880 --> 00:25:17,080
Speaker 1: were doing this, but like he was doing this, I

383
00:25:17,119 --> 00:25:20,440
Speaker 1: was just like a lump, like I wasn't really doing anything.

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00:25:20,600 --> 00:25:25,159
Speaker 1: He was keeping me alive. But things were looking up

385
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Speaker 1: for Janine. The couple moved out of Brooklyn and bought

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Speaker 1: a house a few hours north of the city. They

387
00:25:31,160 --> 00:25:34,240
Speaker 1: had built some structure and a strict medicine regiment that

388
00:25:34,400 --> 00:25:41,159
Speaker 1: kept Janine relatively protected from extreme allergy outbreaks. They felt safe.

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Speaker 1: That was actually an exciting time. I was, you know,

390
00:25:44,800 --> 00:25:46,520
Speaker 1: we felt like we had had like a regiment, like

391
00:25:46,560 --> 00:25:48,159
Speaker 1: we're like, all right, these are the foods that you

392
00:25:48,200 --> 00:25:51,240
Speaker 1: can eat, like the house. The house is like we're

393
00:25:51,240 --> 00:25:53,879
Speaker 1: now in a very rural area, so the air is

394
00:25:53,920 --> 00:25:57,400
Speaker 1: so fresh here. And actually I was doing really well,

395
00:25:57,560 --> 00:26:00,800
Speaker 1: and a family member, wanting to celebrate us buying our

396
00:26:00,800 --> 00:26:05,240
Speaker 1: first house, sent a plant. UM, a house plant. One day,

397
00:26:05,359 --> 00:26:08,480
Speaker 1: I decided I was going to trim it, and whatever

398
00:26:08,560 --> 00:26:14,640
Speaker 1: it released, UM, it started a massive attack for me.

399
00:26:15,359 --> 00:26:21,399
Speaker 1: I again went into anaphylaxis. UM. Brian had to administer

400
00:26:21,760 --> 00:26:25,040
Speaker 1: the EpiPen and we had to call nine one two

401
00:26:25,080 --> 00:26:27,800
Speaker 1: EpiPens and we had to call nine one one and

402
00:26:27,880 --> 00:26:31,080
Speaker 1: be transported to the emergency room, which is fortunately just

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00:26:31,119 --> 00:26:33,880
Speaker 1: a few minutes from our home. So that was when

404
00:26:33,920 --> 00:26:37,359
Speaker 1: things got really bad. So everything that had happened before

405
00:26:38,000 --> 00:26:41,560
Speaker 1: we thought was bad. Uh, turns out that was sort

406
00:26:41,560 --> 00:26:45,880
Speaker 1: of the kind of the warm up round UM without

407
00:26:46,920 --> 00:26:49,160
Speaker 1: kind of trying to YadA YadA YadA things too much.

408
00:26:49,320 --> 00:26:52,520
Speaker 1: By the end of the year, she was no longer

409
00:26:52,560 --> 00:26:59,280
Speaker 1: able to walk, speak, or eat. She was entirely bedridden.

410
00:26:59,520 --> 00:27:05,000
Speaker 1: She was on a series of medicines UH steroids, high

411
00:27:05,040 --> 00:27:08,240
Speaker 1: dose steroids that were camping down her immune system to

412
00:27:08,320 --> 00:27:12,480
Speaker 1: control the ant flaxis UM. But as a result of that,

413
00:27:12,520 --> 00:27:15,199
Speaker 1: she also developed sort of a body wide infection that

414
00:27:15,320 --> 00:27:20,960
Speaker 1: made things even worse. UM. She became far weaker than

415
00:27:21,280 --> 00:27:24,960
Speaker 1: than I've ever seen her. I felt like I was dying,

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00:27:25,280 --> 00:27:30,639
Speaker 1: Like I, it's so close as I've ever felt to that. Um,

417
00:27:30,680 --> 00:27:33,720
Speaker 1: I felt myself slipping away. She had gone from being

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00:27:33,760 --> 00:27:38,119
Speaker 1: a smiling, happy, energetic person too being mute and in

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00:27:38,160 --> 00:27:40,639
Speaker 1: pain and really and angry all the time. Because she

420
00:27:40,760 --> 00:27:44,199
Speaker 1: was she couldn't communicate. But finally the data arrived for

421
00:27:44,240 --> 00:27:47,639
Speaker 1: their appointment at the Mount Sinai Post COVID Care Center

422
00:27:48,320 --> 00:27:52,520
Speaker 1: early in the morning on March third. They piled into

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00:27:52,560 --> 00:27:55,439
Speaker 1: a car they borrowed from their neighbors and drove the

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00:27:55,520 --> 00:27:59,399
Speaker 1: two hours from their home to New York City. We

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00:27:59,520 --> 00:28:01,639
Speaker 1: got there to the post COVID Care Center and we

426
00:28:01,720 --> 00:28:04,399
Speaker 1: met with the doctor. And I will never forget that.

427
00:28:04,440 --> 00:28:08,280
Speaker 1: The first thing she said was she listened to everything.

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Speaker 1: And then after that she said, it's going to be okay.

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Speaker 1: Everyone who comes here gets better. And just to hear

430
00:28:16,800 --> 00:28:20,200
Speaker 1: that was like it was just because I was like,

431
00:28:20,359 --> 00:28:22,359
Speaker 1: I felt like, oh, this is it, Like this is

432
00:28:22,400 --> 00:28:25,120
Speaker 1: my life now, Like I can't really move, I can't

433
00:28:25,119 --> 00:28:28,399
Speaker 1: really eat, I can't really do anything. And and to

434
00:28:28,600 --> 00:28:32,760
Speaker 1: hear that I could get better, and I didn't believe her.

435
00:28:32,800 --> 00:28:35,199
Speaker 1: I have to say. She was like, in six months,

436
00:28:35,640 --> 00:28:37,840
Speaker 1: you will be on a much much better than you

437
00:28:37,880 --> 00:28:39,880
Speaker 1: are today. And I was like, there's no way in

438
00:28:39,960 --> 00:28:43,400
Speaker 1: six months, I'm going to be able to walk better

439
00:28:43,600 --> 00:28:47,280
Speaker 1: and eat better and and all of this stuff. But

440
00:28:47,360 --> 00:28:50,200
Speaker 1: he did, he did, he did see it. The really

441
00:28:50,240 --> 00:28:52,280
Speaker 1: amazing thing with the COVID Care Center was that they

442
00:28:52,280 --> 00:28:54,000
Speaker 1: were now they were able to give us diagnosed he is,

443
00:28:54,040 --> 00:28:56,400
Speaker 1: and they're able to let us know reshures that everything

444
00:28:57,160 --> 00:28:59,280
Speaker 1: that she had was treatable, that it had all been

445
00:28:59,400 --> 00:29:01,880
Speaker 1: caused by But these are all things that would improve.

446
00:29:02,360 --> 00:29:05,040
Speaker 1: As much as we talk about how amazing o our

447
00:29:05,080 --> 00:29:07,160
Speaker 1: our medical team has been over the course of this,

448
00:29:07,560 --> 00:29:11,400
Speaker 1: we do also understand that we're only able to access

449
00:29:12,240 --> 00:29:16,240
Speaker 1: this level of healthcare, you know, because of the Affordable

450
00:29:16,240 --> 00:29:20,040
Speaker 1: Care Act. It feels like we have this belief, this

451
00:29:20,160 --> 00:29:23,560
Speaker 1: feeling in this country that you only deserve as much

452
00:29:23,600 --> 00:29:27,360
Speaker 1: as you can afford, and we're seeing that pushed more

453
00:29:27,400 --> 00:29:30,200
Speaker 1: and more to the forefront with COVID. You know, this

454
00:29:30,280 --> 00:29:32,480
Speaker 1: idea that if you can afford the health care that

455
00:29:32,480 --> 00:29:36,720
Speaker 1: will help you to live, then you can live. Yeah.

456
00:29:36,760 --> 00:29:38,400
Speaker 1: And if you know there are people listening to this

457
00:29:38,520 --> 00:29:40,960
Speaker 1: that are thinking about the solutions. I just hope that

458
00:29:41,000 --> 00:29:45,000
Speaker 1: they understand, like we you know, this is a disability,

459
00:29:45,080 --> 00:29:49,120
Speaker 1: like long COVID is a disability. Um, you can't go

460
00:29:49,200 --> 00:29:52,640
Speaker 1: back to life as you were. I look back at

461
00:29:52,680 --> 00:29:55,000
Speaker 1: my photos in my phone. When you now, your photos

462
00:29:55,040 --> 00:29:56,600
Speaker 1: like will pop up and they'll be like what you

463
00:29:56,640 --> 00:29:58,920
Speaker 1: did like three years ago, and I'll be like, oh

464
00:29:58,920 --> 00:30:01,880
Speaker 1: my god. On this one day, we were like at

465
00:30:01,880 --> 00:30:04,800
Speaker 1: an art opening, we went out to a dinner, we

466
00:30:04,840 --> 00:30:06,600
Speaker 1: went to a party, and we didn't get home to

467
00:30:06,600 --> 00:30:08,360
Speaker 1: like three o'clock in the morning. And that was very

468
00:30:08,440 --> 00:30:11,240
Speaker 1: normal for us to be out all night and going

469
00:30:11,280 --> 00:30:14,400
Speaker 1: out with friends and you know, um, you know, just

470
00:30:14,480 --> 00:30:18,880
Speaker 1: kind of a crazy, like crazy New York City. And

471
00:30:19,720 --> 00:30:21,840
Speaker 1: I'm now, I'm like, I can't do that, Like I

472
00:30:21,880 --> 00:30:25,520
Speaker 1: can't go to a restaurant. We don't go to restaurants because, um,

473
00:30:25,560 --> 00:30:27,800
Speaker 1: I don't know all the ingredients that are in the food.

474
00:30:28,360 --> 00:30:31,800
Speaker 1: Even when we visited some family over the holidays, we

475
00:30:31,880 --> 00:30:34,600
Speaker 1: brought all of our own food because he had to

476
00:30:34,640 --> 00:30:39,200
Speaker 1: cook my menu of like approved items that I can eat.

477
00:30:40,120 --> 00:30:43,160
Speaker 1: When people do come here, we do tell them you

478
00:30:43,200 --> 00:30:47,320
Speaker 1: can't wear anything that's perfumed. That means no like lotions

479
00:30:47,360 --> 00:30:50,200
Speaker 1: that have perfumed in them. We are like, we give

480
00:30:50,240 --> 00:30:52,560
Speaker 1: a list of like you could use an unscented soap

481
00:30:52,960 --> 00:30:56,440
Speaker 1: from this brand. That's good. UM, don't put product in

482
00:30:56,480 --> 00:30:59,160
Speaker 1: your hair because we can't have anything like that. Nothing's

483
00:30:59,200 --> 00:31:02,840
Speaker 1: incidentally or everything is a strategy. Everything's a plan in

484
00:31:02,880 --> 00:31:09,200
Speaker 1: every detail matters, because you know, something as as small

485
00:31:09,280 --> 00:31:14,320
Speaker 1: as moving a house plant can can cause a serious problem.

486
00:31:14,320 --> 00:31:18,400
Speaker 1: We need help from the government in terms of UM

487
00:31:18,440 --> 00:31:20,840
Speaker 1: being able to take care of our care We need

488
00:31:20,840 --> 00:31:24,000
Speaker 1: help for caretakers like my husband because he's doing this

489
00:31:24,040 --> 00:31:26,240
Speaker 1: full time and making sure that we have a company

490
00:31:26,880 --> 00:31:31,400
Speaker 1: UM that still continues to run. I just want people

491
00:31:31,400 --> 00:31:35,120
Speaker 1: to understand that the long haul is a long haul.

492
00:31:38,080 --> 00:31:55,640
Speaker 1: We'll be right back. My life before COVID was UM,

493
00:31:55,640 --> 00:31:58,320
Speaker 1: it was a beautiful life. It was a very active life.

494
00:31:59,120 --> 00:32:02,320
Speaker 1: Shamir L. Smith is a thirty nine year old middle

495
00:32:02,320 --> 00:32:06,880
Speaker 1: school teacher living in Baltimore, Maryland. Being a teacher was

496
00:32:06,960 --> 00:32:10,480
Speaker 1: like was that job in that career was? It was

497
00:32:10,520 --> 00:32:14,160
Speaker 1: a God send to me, the best career I've ever had.

498
00:32:15,600 --> 00:32:21,440
Speaker 1: Like Janine, Shamir's long COVID journey turned her life upside down. Also,

499
00:32:21,560 --> 00:32:26,280
Speaker 1: like Janine's, Shamir's story reveals some ugly truth about our

500
00:32:26,320 --> 00:32:32,840
Speaker 1: health care system. I first experienced my symptoms March twenty.

501
00:32:32,880 --> 00:32:35,960
Speaker 1: I will never ever forget that day. It started off

502
00:32:36,080 --> 00:32:38,880
Speaker 1: very mildly. I thought that I had a sore throat

503
00:32:39,320 --> 00:32:42,160
Speaker 1: and a little bit of a cough. Was Shortly thereafter,

504
00:32:42,200 --> 00:32:45,320
Speaker 1: those symptoms begin to grow into more and and too

505
00:32:45,320 --> 00:32:49,360
Speaker 1: more serious symptoms. After that, I was afraid and I

506
00:32:49,400 --> 00:32:52,480
Speaker 1: wanted help, and they assured me that nothing was wrong.

507
00:32:52,920 --> 00:32:57,000
Speaker 1: I was turned away many times my life, in my relationships.

508
00:32:57,160 --> 00:33:02,760
Speaker 1: How I view doctors UM have changed um today, Even today,

509
00:33:02,800 --> 00:33:06,200
Speaker 1: I feel fear and anxiety when I think about going

510
00:33:06,280 --> 00:33:09,960
Speaker 1: to a doctor's office. Not just because COVID is still

511
00:33:10,040 --> 00:33:13,560
Speaker 1: running rampant. It's because I don't trust doctors. I don't

512
00:33:13,560 --> 00:33:16,680
Speaker 1: trust that they have my best interests at heart. I've

513
00:33:16,840 --> 00:33:20,880
Speaker 1: I've experienced a plethora of doctors who weren't listening to me.

514
00:33:21,040 --> 00:33:24,720
Speaker 1: They weren't hearing me, they weren't thinking about me. They

515
00:33:24,760 --> 00:33:28,240
Speaker 1: were arguing with me about my condition and how I felt,

516
00:33:28,600 --> 00:33:31,560
Speaker 1: and they weren't trying to treat me. And I'm gonna

517
00:33:31,600 --> 00:33:34,120
Speaker 1: tell you the truth. As a black woman, since I

518
00:33:34,160 --> 00:33:39,400
Speaker 1: started working at sixteen, I was always told by my mother,

519
00:33:39,760 --> 00:33:42,440
Speaker 1: my auntie's and other women and my family and other

520
00:33:42,480 --> 00:33:46,880
Speaker 1: women who were my friends and um older friends who said, girl,

521
00:33:47,640 --> 00:33:51,480
Speaker 1: you've got to make sure you cover yourself in everything

522
00:33:51,520 --> 00:33:54,480
Speaker 1: where you work. And so what I learned from that is,

523
00:33:54,920 --> 00:33:58,760
Speaker 1: no matter what I was doing, to always take notes

524
00:33:58,960 --> 00:34:03,800
Speaker 1: about my experience and what happened, that advice was ingrained

525
00:34:03,800 --> 00:34:05,800
Speaker 1: in me as a black woman when I went to

526
00:34:06,200 --> 00:34:10,799
Speaker 1: hospitals and medical centers and and and laboratories. For me,

527
00:34:11,400 --> 00:34:14,319
Speaker 1: what I knew from the very beginning, from the very

528
00:34:14,400 --> 00:34:17,959
Speaker 1: first time I went to the hospital, is that there

529
00:34:18,000 --> 00:34:24,000
Speaker 1: is an expectation, an unspoken bias, that black people are

530
00:34:24,160 --> 00:34:28,040
Speaker 1: not aware of their bodies, and so we have to

531
00:34:28,120 --> 00:34:34,480
Speaker 1: work harder to convince doctors about what is happening in

532
00:34:34,560 --> 00:34:37,200
Speaker 1: our bodies and the kind of care that we need.

533
00:34:38,000 --> 00:34:40,560
Speaker 1: Because as I was starting to read notes off my

534
00:34:40,640 --> 00:34:45,080
Speaker 1: phone with fifty plus symptoms and what happened every day

535
00:34:45,120 --> 00:34:48,360
Speaker 1: to me and my journal entries off my phone, those

536
00:34:48,400 --> 00:34:51,560
Speaker 1: doctors were looking at me and awe because they couldn't

537
00:34:51,560 --> 00:34:56,000
Speaker 1: believe that this black woman knew how to articulate what

538
00:34:56,040 --> 00:34:58,760
Speaker 1: was happening inside of me. I argue with a doctor

539
00:34:59,040 --> 00:35:01,080
Speaker 1: as I sat in the host fital for seven days.

540
00:35:01,440 --> 00:35:04,879
Speaker 1: I argued with him about the fact that um long

541
00:35:05,000 --> 00:35:08,880
Speaker 1: COVID caused occipital near Rouga and try Geminal no Rouga.

542
00:35:09,200 --> 00:35:12,000
Speaker 1: He tried to convince me, well, no, I went to Hopkins.

543
00:35:12,040 --> 00:35:14,560
Speaker 1: I I know what's going on and and and and

544
00:35:14,640 --> 00:35:17,759
Speaker 1: COVID doesn't cause any brain issues, only for us to

545
00:35:17,760 --> 00:35:22,040
Speaker 1: find out two years later that it absolutely does. And

546
00:35:22,080 --> 00:35:25,320
Speaker 1: so I think for a lot of us, as black people,

547
00:35:25,800 --> 00:35:30,319
Speaker 1: we already know that from the workplace in education, uh

548
00:35:30,360 --> 00:35:34,839
Speaker 1: illegal matters to see Y ain't. And so what that

549
00:35:34,880 --> 00:35:37,360
Speaker 1: means is just to cover our butts, to make sure

550
00:35:37,800 --> 00:35:42,040
Speaker 1: that in writing what we are saying and experiencing can

551
00:35:42,120 --> 00:35:46,240
Speaker 1: also be translated and transcribed to doctors. Because I knew

552
00:35:46,600 --> 00:35:48,840
Speaker 1: that if I did not take those notes as a

553
00:35:48,920 --> 00:35:53,319
Speaker 1: black woman, that because of the racism that I experienced,

554
00:35:53,520 --> 00:35:57,000
Speaker 1: I had a feeling that I would not be taken seriously.

555
00:35:57,880 --> 00:36:02,160
Speaker 1: Six hundred miles west in Louisville, Kentucky, Deepest Singh was

556
00:36:02,280 --> 00:36:05,680
Speaker 1: also having a hard time getting help. I would go

557
00:36:05,719 --> 00:36:11,680
Speaker 1: into these appointments and I couldn't be taken seriously. Deepa

558
00:36:11,920 --> 00:36:14,840
Speaker 1: is thirty now, but she was twenty eight when she

559
00:36:14,960 --> 00:36:19,120
Speaker 1: started seeking answers for her long COVID symptoms. I've already

560
00:36:19,160 --> 00:36:21,959
Speaker 1: been to so many appointments where I was told, oh,

561
00:36:22,040 --> 00:36:25,160
Speaker 1: you have a sinus infection, or you have allergies, you

562
00:36:25,200 --> 00:36:30,200
Speaker 1: have anxiety, anxiety induced by this pandemic in these lockdowns,

563
00:36:31,120 --> 00:36:36,680
Speaker 1: and because of that, I would switch providers and I'm like, okay, well,

564
00:36:36,719 --> 00:36:40,520
Speaker 1: this is a dead end. Let's go to this other provider. Okay,

565
00:36:40,560 --> 00:36:45,400
Speaker 1: that's a dead endless drugs, other provider. And I believe

566
00:36:45,480 --> 00:36:51,680
Speaker 1: that first year I had seventy plus medical claims alone.

567
00:36:53,560 --> 00:36:55,799
Speaker 1: I was starting to believe that the providers who were

568
00:36:55,800 --> 00:37:00,600
Speaker 1: telling me was psychosomatic and it was anxiety driven. I

569
00:37:00,719 --> 00:37:04,800
Speaker 1: truly felt like, okay, well and having a mental break.

570
00:37:05,760 --> 00:37:08,960
Speaker 1: I saw a hospital treatment care and care about twelve

571
00:37:09,080 --> 00:37:12,800
Speaker 1: times over six months. I was turned away many times.

572
00:37:12,840 --> 00:37:15,760
Speaker 1: But before I was turned away, I often was told

573
00:37:15,840 --> 00:37:19,480
Speaker 1: that I wasn't well in my head, I was too anxious,

574
00:37:19,840 --> 00:37:22,600
Speaker 1: and I was also you know, sadly, you know this

575
00:37:22,680 --> 00:37:25,840
Speaker 1: affects me as a black woman. I was seen after

576
00:37:25,960 --> 00:37:29,440
Speaker 1: white men and other men, um like I wasn't receiving

577
00:37:29,440 --> 00:37:32,040
Speaker 1: the same kind of care as the men in the

578
00:37:32,080 --> 00:37:36,879
Speaker 1: hospital across from me. And that was devastating. I have insurance.

579
00:37:37,440 --> 00:37:39,960
Speaker 1: I've been working as a teacher at that time for

580
00:37:40,000 --> 00:37:43,120
Speaker 1: five years. I checked off all the boxes that would

581
00:37:43,120 --> 00:37:47,319
Speaker 1: have made me um a candidate to get care, and

582
00:37:47,360 --> 00:37:49,440
Speaker 1: I didn't receive the care that I deserved. And I

583
00:37:49,480 --> 00:37:57,640
Speaker 1: know that many people don't either, even still after two years. Tomorrow,

584
00:37:57,719 --> 00:38:01,560
Speaker 1: on Next Question, Who's helping long COVID sufferers get the

585
00:38:01,640 --> 00:38:06,240
Speaker 1: care they need and deserve, we unpacked the systemic issues

586
00:38:06,320 --> 00:38:09,960
Speaker 1: at the heart of these patients experiences and explore the

587
00:38:09,960 --> 00:38:14,040
Speaker 1: heroic efforts of the few heating the long COVID call.

588
00:38:14,960 --> 00:38:18,760
Speaker 1: That's part two of our long COVID deep dive coming tomorrow.

589
00:38:20,600 --> 00:38:24,120
Speaker 1: To see some of the experiences of our long COVID patients,

590
00:38:24,160 --> 00:38:26,840
Speaker 1: you can check out my YouTube page, where my video

591
00:38:26,920 --> 00:38:30,480
Speaker 1: team has posted powerful stories of the many and varied

592
00:38:30,520 --> 00:38:34,560
Speaker 1: ways long COVID has affected the people with whom we spoke.

593
00:38:35,680 --> 00:38:38,799
Speaker 1: If you're suffering long COVID symptoms and are looking for

594
00:38:38,960 --> 00:38:42,000
Speaker 1: some help, you can reach out to long COVID support

595
00:38:42,040 --> 00:38:47,319
Speaker 1: groups like Body Politic and Survivor Cores. Thanks so much

596
00:38:47,360 --> 00:38:53,720
Speaker 1: for listening. Next Question with Katie Curic is a production

597
00:38:53,760 --> 00:38:57,080
Speaker 1: of My Heart Media and Katie Kuric Media. The executive

598
00:38:57,080 --> 00:39:01,320
Speaker 1: producers are Me, Katie Kuric, and Courtney Litt. The supervising

599
00:39:01,320 --> 00:39:06,720
Speaker 1: producer is Lauren Hansen. Associate producers Derek Clements and Adriana Fasio.

600
00:39:07,040 --> 00:39:10,400
Speaker 1: The show is edited and mixed by Derrick Clements. For

601
00:39:10,560 --> 00:39:13,360
Speaker 1: more information about today's episode, or to sign up for

602
00:39:13,480 --> 00:39:16,400
Speaker 1: my morning newsletter, wake Up Call, go to Katie correct

603
00:39:16,480 --> 00:39:19,040
Speaker 1: dot com. You can also find me at Katie Curic

604
00:39:19,120 --> 00:39:22,759
Speaker 1: on Instagram and all my social media channels. For more

605
00:39:22,800 --> 00:39:26,359
Speaker 1: podcasts from I Heart Radio, visit the I Heart Radio app,

606
00:39:26,560 --> 00:39:30,120
Speaker 1: Apple Podcast, or wherever you listen to your favorite shows,