Breakthrough: Rehab for Long Haulers

was grim. We had a countdown for the number of days before we ran out of beds, you know, And that was something that we were just managing with my team while we were testing out clever ways of turning bipad machines into ventilators, building our own ventilators, building a remote patient monitoring out to track acutely all patients, chasing down PPE. David does what he can, but it's mostly distributing face masks and medications. The reality is doctors don't

know much about COVID or how to fight it. The most they can do is try to prepare. I was meeting people on the street who had boxes of ten, you know, in n and I was immediately rushing that off to whichever friend at whichever hospital needed most. There was just all sorts of crazy stuff going on in the early phase of the pandemic. The pandemic just gets worse and worse numbers continue to rise, and every part

of the healthcare system becomes strained. People were getting COVID symptoms going to the hospital, they're being told, look, we don't have beds and you're not sick enough, go home and come back if you're worse, which is a really terrifying thing to say to someone who is sick with an unknown illness, with an unknown disease. Course, you know how much sick of do? At what point do I

come back? So David and his colleagues start thinking about a way they can monitor COVID patients safely from their homes, and they settle on the idea of creating an app. My team has a lot of expertise and remote patient monitoring, so we developed an app in something like or thirty six hours, launched it. We said, here's a hotline. If you're having symptoms, call this number. The app proms uses to answer simple questions like whether they have a fever

or a cough. David says, pretty soon hundreds and then thousands of patients are being monitored this way. Then around mid April, as strange pattern emerges for all, we started seeing this cluster of people who were expressing different symptoms patients report diligently on the app. At first, they were predominantly complaining of headaches, fevers, and shortness of breath, But

suddenly they are symptoms more. Now they were talking about dizziness and fatigue, and I can't seem to exercise the way I used to, and you know, there's something about this that can't shake. And my heart feels like it's beating out of its chest, and you know, arms are tingling, my feet are going blue, you know, all of these very odd symptoms. What was immediately striking to me was just how similar all of these how random these accounts were,

but really similar, David says. What's also bizarre is that almost all of these patients were never hospitalized. A common narrative, in fact, is yeah, I got it. I was fine, you know, I was more or less asymptomatic, um, you know, and I didn't think there was anything to worry about. And then two weeks after my symptoms went away, I got hit with this. What David is describing Harold's the start of his journey into trying to understand long COVID.

He would go on to search for ways to help the millions of people across the world dealing with symptoms months after their coronavirus infection. Many patients are caught in a sort of medical purgatory where their problems aren't understood, much less treated, and the advice they get is well, not always reliable. If anyone tells you that they know what's going on, they're lying to like, don't trust that person. That's the one person you can't trust is the person

who tells you categorically they know what's going on. And I've certainly seen a lot of clinicians doing that. As scientists rushed to figure out the causes of long COVID, some health providers aren't waiting for answers. There are already finding ways to help patients now. I'm Jason Gale, chief By, a security correspondent and a senior editor at Bloomberg News from the Prognosis podcast. This is breakthrough and they told my family she's not going to make it, and so

you need to come in and say yo, goodbyes. Billie McCarthy could it bad case of COVID? Back in February this year, Kelly is a fifty one year old grandmother from a town in Massachusetts amount twenty miles southwest of Boston called Foxboro. Soon after falling ill, Kelly couldn't move. I couldn't even get out of bad. My husband's like, I have to throw you over my shoulder. You're going urgent care, which is good because when I got there, my oxygen was below seventy, which I guess is bad.

Kelly's condition deteriorated fast once she got sick. It got so bad that she had to be introbrated and put into an induced coma. She couldn't breathe on her own. Eventually, she was given a tracking ostomy so a tube could be inserted directly into her windpipe, but the prognosis was still grim, and doctors thought Kelly would need a double lung transplant. That wasn't needed in the end, and after two months in three hospitals, she was eventually released. But

the second chapter of Kelly's COVID story was just beginning. Hospitals, medical tests, and chronic disability have turned her world upside down. Kelly's main deficits are neurological. She can't feel her fingertips, and she's suffering memory problems. Kelly's doctors are familiar with her symptoms but she says it's not always so easy

for long haulers to get good medical advice. I go over to the COVID clinic um to meet with all the people there, because if you go to a regular doctor with you know this is the problem, they're gonna look at it like a normal symptom of a normal thing. Kelly is referring to an outpatient clinic at that bring him in Women's Folking Hospital in Boston. It's been four months since she was discharged, and Kelly goes there for follow up treatment. Today she's sitting in the park across

the street after seeing her doctor. Her recovery, she says, is still touch and go, like today, I'm having a good day, yesterday and Saturday or terrible. I can't grasp the words I need. Um, I get confused what I'm saying. It's almost my brains working way over time, and my mouth isn't working nearly fast enough. The problem extends to

her short term recall and cognition. I forget things all the time, Like I'll look at one page and then I'll look to another page to put what it was I saw on this page, and I have to keep flipping back and forth several times. I've even been known to write it on my hands so I don't have to keep flipping by. These are having a monumental impact on Kelly, who before COVID was an insurance claims adjusta

working out who is what after an injury? And I've never been the poster girl for for Strong Memory ever, but this is like this, This is what makes it difficult to go back to work because I have to know, I have to be on the money, so to speak. Um, Because if I'm talking to an attorney about their clients and their clients injuries and how much you know, the whole big picture is worth and to negotiate, if I can't remember every little pod and peanut, then it's gonna

be hard to negotiate with them. Oh, your your client broke is lead. No, actually they sprain their thumb, but okay, you know, and I can't do that one. It's one. It's embarrassing too. It's bad for the company to have people like that trying to settle claims there. It's embarrassing. Um, you know. So it's just like I can't do and I hate to say this, I can't do anything important because I can't I just can't yet. Kelly says that

her neurological issues also affect her driving. Get easily distracted, and then I'll notice my car is going like this, or I'll be walking and I'm shaking, and that sort of goes into the car with me. I almost hit a car on this eat the other eggause I didn't even see it till I was right there. And that's when I went home. And what road today. The symptoms, too, came manifest at all hours. Another source of Kelly's distress

is the difficulty she has sleeping. A lot of that has to do with the six weeks she spent in a drug induced coma. Although heavily sedated, she was still able to connect with some aspects of being intubrated in the ICU, but not make sense of them. And this delirium generates persistent nightmares, awful awful, awful nightmares. And but I wasn't so sedated that reality wasn't coming in, so like things were coming in from my reality, mixing into

the dream and making it worse. Hell. He says that early on, fear of these nightmares kept her from falling asleep. I was afraid I was going to have the dreams. And I was having the dreams that I was having in the column, and now my dreams are if I start having a weird dream, a wake up and beating on my husband, they're trying to put me in a colma again. No they're not, they're not. No, go to sleep, Okay, so I do, but it's a weird feeling. Think about

this from the doctor's point of view. Your patients are coming to you with a slew of conditions that may not even seem related. Their short term memory is failing, they're having horrible nightmares, they shake. It's hard to imagine where to start. But David Petrino, the starting point for understanding how to treat long COVID is the patient data coming in on his app. There's a pattern emerging that offers some clues. For instance, these long haulers share some

common features. What we're seeing is a medium age of forty two. Um. About of the patients who come to us are women, So I'd say it's about fifty fifty two people who had like some sort of significant medical history versus just fit and healthy and used to run marathons and keeps in good shape. And all of these sorts of things. In the fall of David and his colleague, doctor z gan Chan, set up a rehabilitation service for COVID survivors at Mount Sinai. They call it the Center

for Post COVID Care. But at first they need to figure out which patients will see which clinicians. So David says to his colleague, Hey, here's what we're gonna do. If you're examining someone and they've got a bunch of symptoms and you can scan them, take their blood, look at their organs and say, this is the proximate cause of your symptoms. This is it. We we know what this is um and it's because of COVID, but we can see it. It's on a scan you take them.

If you have someone showing up with a laundry bag of symptoms and you can't see a single thing on their scan that would explain all of these symptoms, that to me is what we're going to call post acute COVID syndrome PACKS. And that was that was the term we we coined in April, and we said we're calling it packs, and they'll come to us and off we go. Patients with medically explainable ailments are managed by pulmonologists, cardiologists,

and other relevant specialists. But then there are the long haulers whose symptoms can't be easily explained. David knows their conditions fall under a broad umbrella of needs, so he brings together a team of doctors and allied health practitioners with different expertise. They work with him to come up with strategies to help manage their patients specific problems. There's a cardiologist who specializes in how viruses affect the heart.

There's a nutritionist who helps patients with food sensitivities. A couple of physiatrists. These are medical doctors who treat pain. And there's a doctor of physical therapy and she is focused entirely on, you know, treating people who have close concussion syndrome, again, something that looks very very similar. You've got heart palpitations, you've got difficulty with exercise and exertion. Then there's Josh Dunt's formal naval special oms guy who

disarmed bombs for a living. He tells David that some long COVID patients are displaying symptoms of something it's seen in the military. It's called hypercapnia, which means a lack of carbon dioxide in the blood. It can be the result of deep or rapid breathing and can cause a tingling sensation in the limbs, as well as a normal heartbeat,

muscle cramps, and anxiety. For this, he had seen this sort of symptom cluster before UM and it had taken the form of hypercapnea in in You know, fighter pilots who had pulled too many g's and we're having a physiological response to that, and their CEO two would drop, get heart palpitations, they get dizziness, they get these attacks. Josh tells David to test patients carbon dioxide levels. Sure enough,

a large proportion of our patients were hypercapnic. Josh works in a breathing regiment to increase patients CEO two tolerance. It involves changing the duration of inhalations and exhalations, with the net effect of expelling less carbon dioxide. David says he doesn't know the underlying cause of patient's hypercapnea, but the technique helps. Again, this leads back to pat physiology, and it's it's a bit of a blank slate, but we know that when we increase people's SERO two levels,

an edge comes off of symptoms. In most cases, figuring this out has given patients a way of controlling their symptoms. David says that if they feel an attack coming on, they can rein in these manifestations faster by focusing on

their breathing for a couple of minutes. Psychologically, that's a big big deal, you know, just being able to say I have control over this, as opposed to I have almost fainted and I have no idea why, you know like that, that is a horrifying feeling to be somewhere public and feel like you're going to pass out and

have no understanding of what's happening to your body. You don't want to go to the emergency department for the fifth time because you know they're just gonna test everything they've already test, give you an I V for hydration, and then send you on your way with probably a five grand bill. Pulling together a team of specialists with wide ranging skills and knowledge is one thing, but getting these experts to work collectively to actually help long haulers

is another. One of the first things David needs to figure out is how exactly he's going to offer the kind of coordinated holistic care patients need, and then he needs to work out how that's going to be delivered. Many of his patients are so debilitated that frequent face

to face therapy sessions just aren't an option. What was alarming to me was how, because the medical system is really hyper specialized here, um, how many people would just be bounced from specialist to specialists without anyone offering a treatment or anyone offering a plan. And it was almost like a game. You know, Oh, you got sent to me. No, no, no, you've got g I symptoms. You know, here's the gastro intrologists. You get to the gastro intrologists. Oh, you've got a headache.

That's a neurology problem. If you go to the neurologist, patients typically have to wait three weeks for a specialty appointment. Many aren't working, and their insurance is running out, and all of this is compared outting their stress. Often by the time they made it to our clinic, they're so overwrought, um that it's it's a miracle that they're still standing,

let alone managing this highly debilitating condition. There are no established practices and protocols to follow with long COVID patients aren't fitting into neat boxes. David finds that you have to start with the basics. It's trial by error and there are no guarantees of success. He says, being upfront and telling patients that from the outset is actually a source of comfort, just being able to say, you know what,

this is what we think is going on. And we would always lead with so much uncertainty, like there was no this is what's happening to you. It is, here's what we think is going on. It's an entirely novel virus. I can tell you that I've spoken to a thousand other people who have symptoms just like yours. Here's what we think is happening, and here's how we're gonna manage a few things in the moment. And if these things don't work, come back to me, because then we're going

to try these things. It's really leading with vulnerability. But um, all of the patients that we saw which just would appreciate it so much to just be like, thank you, thank you for not being overconfident, thank you for not dismissing my symptoms, thank you for taking a multi system approach. David takes that same level of honesty into the two clinics he runs of along Haulers in New York City.

The centers are essentially big, open rooms with various pieces of equipment ranging from you know, robotic tilt tables that allow us to you know, specifically calibrate exercise for the very very severe cases all the way out to treadmills for the people who are getting to the point where we can start pushing them. There are also devices for taking patient measurements, blood pressure cuffs, wholes eximters, and instruments

to check for hypercapnia. We've got a set of things called friends All goggles which allow us to measure the vestibular system, your balance system that can identify autonomic nervous system problems occurring in patients when they go from sitting to standing. For example, the autonomic nervous system being part of your nervous system that does all of the things

that you usually don't need to think about. You know, when you should feel hot, when you should feel cold, when you should sweat, when your heart should beat, when you should breathe, and when that gets disordered, that's when all of these odd symptoms start to emerge. Changing body positions is often one of the biggest ways to stress

the autonomic nervous system. David says it's quite a challenging thing logistically to get all of the blood vessels to open and close and blood pressure to regulate as you're moving from sitting to standing. That's actually a really challenging thing to do. That Your body does automatically until a virus or something or some form of trauma knocks it out of balance, and then all of a sudden it forgets how to do that. Rehab isn't slow and often

frustrating process that takes easily days. We start with prehab, which is breathwork, so you know, first things first, we just make sure that everyone is working on just getting their blood gases in a place where they feel like they have their symptoms under control. David says that it sounds really basic, but it changes to the way you breathe and the natural rhythm of your breath have different effects on the body. We heard about the technique for hypercapnia,

but there are others. You know, there's one one protocol, for instance, it's called box breathing, which is one of the fastest ways to regulate your parasympathetic nervous system. So we'll bring your heart right down, it'll bring your blood pressure down, and he'll do it quickly. Um. And so you know, finding the right breath work protocol for the right set of symptoms can sometimes be a bit of trial and error, but these things have measurable physiological effects

and so they can be really powerful. After breathwork, patients moved to the first step of the rehab program. In most cases, it involves line flight on your back, so you're fully recumbent and we just getting gentle leg movements going at this point. In most cases, our patients aren't their heart rate isn't stable enough for us to use heart rate as a guide, so we actually use a scale called the Boord scale, which allows you to rate

received exertion how hard you think you're working. And you know, if you think of the scale of you know, once ten where well zero to ten where zero is nothing and and tenders maximal as hard as you could possibly think you're working. Um, we don't let anyone exceeded too from their patients move slowly into a more upright position and the intensity gradually increases. We get them to a point where we actually can use their heart rate as

a guide. Their heart rate has started to regulate. It's not racing all the time and ramping up and ramping down. It's starting to regulate, so we can now use it as a guide to you know, um, paced the exercise the way that we want to. We're now calling it exercise. David says that up until this point, the goal of the rehabilitation is to slowly condition the autonomic nervous system so it gets used to being challenged. What we're trying to do is just stress the body enough that the

that the body has to react. So your heart rate needs to read is up. Maybe you need to breathe slightly, you know, slightly more. Your respiratory rate might increase by one breath per minute. You know, we're talking very little. Um. Your body temperature may change slightly, but you're not really doing anything difficult. The center tries to help patients within

the limits of what their insurance will cover. David says that usually means capping sessions at two a week, and if someone is quite severe, it will be three times a week. We tried to do from home where possible because um, you know, you just heard what I described right, Laying flat on your back and moving your legs. All of that is blown out of the water. If I'm asking you to leave your apartment and come see me

in Manhattan, you know, like, that's that's exertion. So you know, we we do our absolute best to try to to reduce burden on the patient, both financial and physical. Somewhere around day one, patients are typically able to work at

their maximum heart rate. They're on a treadmill or a bike or whatever is comfortable for them, and they're getting a workout, and that's usually the point where we're like, okay, well, these are all your triggers, these are the behaviors, these are things to avoid, these are the things to encourage. Keep going with the exercise. Every day. There are graduates

from the program, which is encouraging. I'd say we've at this point successfully discharged a few dozen, so probably fifty or sixty to the point where they're happy to move on. We're happy to let them go. Um. But then yeah, there's a large number of people just still in ongoing rehab. But for some their symptoms come back after months of treatment, and David says that raises questions about the long term trajectory for long haulers. Some of our patients who have

been discharged for the longest their experience relapses. So, you know, we need to understand the path of physiology to understand how long is this going to be going on for? How long are people are going to be symptomatic for. Is this something you're gonna have to manage for your entire life, or is this something that you're gonna have to manage for the next five to ten years. Or is this something that we can rehabilitate and we'll just charge you and you will never have to think about

it again. So these are all open questions right now. Unlike ASMIR on diabetes, long COVID isn't a chronic disease doctors and researchers have known about and studied for decades. It's been around for just over a year and a half. There's not the accumulated wisdom of published medical studies to guide treatment. A lot of it, David says, is about

learning from patients. So I remember, you know very well, thinking, wow, you know, this is someone who was told at some point that her family were told that she's not going to make it, or they were told that she might not come off the breeding machines who might mean the long transplant at some point. This is Dr carlord Ismail. He's the medical director of the pulmonary division of the outpatient tour Ambulatory section where Kelly McCarthy is going for treatment.

Colored began seeing Kelly in the summer. At the start, he found it hard to match his new patient with her recent medical history. Here she is walking in clinic on her own feet h and having a conversation with me that she was in an actually a very cheerful mood, much like David's work. Colored describes his approach to helping Kellys seems to management that's based on listening to the patient.

For example, for her memory problems, Kelly's is a neurologist a taking images of her brain to look for anything else that could be affecting her. But Carlin says, if they can't find an underlying cause, they have to use the tools available to them. We will probably rely on things like neurologic rehab, things that help with memory, memory exercises.

But there's no telling whether memory exercises and other forms of neurological rehab will help the fact is there's still a lot of uncertainty around treating Kelly and patients like her. It's hard to know. Again, we don't know what's causing it, so it's hard to tell how long it's gonna last. Kelly says she gets a lot of comfort from the case she receives that that bring them in Women's COVID Recovery Center, but the ambiguity of getting back to normal

ways on her. Is it ever going to be normal again? Am I ever going to be able to be me? And I don't feel like me so and I don't cry, but I don't feel like me anymore. It's taking things from me that are the most important to me, you know. Even as one pandemic of infectious disease rages on another scourges accumulating in its way, Long COVID is leaving behind a mysterious, pernicious, and ultimately unvaluable wave of chronic, debilitating

disease that may take years to understand. Treatments don't have to wait. That's it for this episode of prognosis Breakthrough. On our next episode Long COVID's Legacy, we'll meet too best friends who together are navigating the persistent loss of smell and what it means for long haulers now and in the future. It's been a very very fruitful friendship. And then obviously when I got the very sad news that Alex was diagnosed with COVID, she Facebook message me.

I think the message it a bit of fun news. I have COVID, so it'll be right, I said, you'll get it back. Inside I was panicking. This episode of Prognosis Breakthrough was written and reported by me Jason Gale, with help from John Leleman. So for Foes is our senior producer. Carl Kevin Robinson Jr. Is our associate producer. Our theme music was composed and performed by Hannes Brown. Rick Shine is our editor. Francesca Levy is the head

of Blemburg Poadcasts. Be sure to subscribe if you haven't already, and if you like this episode, please leave us a review. It helps others to find out about the show. Thanks for listening.