WEBVTT - Breakthrough, Part Three: Rehab for Long Haulers 0:00:01.000 --> 0:00:04.720 It's the start of the pandemic in and David Petrino 0:00:04.880 --> 0:00:09.080 is scrambling. He's the director of Rehabilitation Innovation at the 0:00:09.119 --> 0:00:11.960 Mount sign A Health System in New York, the city 0:00:12.039 --> 0:00:16.159 that's about to become the global COVID nineteen hotspot. It 0:00:16.280 --> 0:00:21.000 was grim. We had a countdown for the number of 0:00:21.079 --> 0:00:24.360 days before we ran out of beds, you know, And 0:00:24.480 --> 0:00:28.360 that was something that we were just managing with my 0:00:28.480 --> 0:00:33.720 team while we were testing out clever ways of turning 0:00:33.760 --> 0:00:38.680 bipad machines into ventilators, building our own ventilators, building a 0:00:38.680 --> 0:00:44.080 remote patient monitoring out to track acutely all patients, chasing 0:00:44.120 --> 0:00:48.680 down PPE. David does what he can, but it's mostly 0:00:48.720 --> 0:00:53.560 distributing face masks and medications. The reality is doctors don't 0:00:53.560 --> 0:00:56.320 know much about COVID or how to fight it. The 0:00:56.400 --> 0:00:59.320 most they can do is try to prepare. I was 0:01:00.120 --> 0:01:04.560 meeting people on the street who had boxes of ten, 0:01:04.720 --> 0:01:08.880 you know, in n and I was immediately rushing that 0:01:09.000 --> 0:01:14.759 off to whichever friend at whichever hospital needed most. There 0:01:14.840 --> 0:01:18.080 was just all sorts of crazy stuff going on in 0:01:18.200 --> 0:01:23.280 the early phase of the pandemic. The pandemic just gets 0:01:23.319 --> 0:01:27.199 worse and worse numbers continue to rise, and every part 0:01:27.200 --> 0:01:30.480 of the healthcare system becomes strained. People were getting COVID 0:01:30.480 --> 0:01:33.720 symptoms going to the hospital, they're being told, look, we 0:01:33.800 --> 0:01:36.959 don't have beds and you're not sick enough, go home 0:01:37.640 --> 0:01:40.800 and come back if you're worse, which is a really 0:01:41.720 --> 0:01:45.560 terrifying thing to say to someone who is sick with 0:01:45.560 --> 0:01:48.600 an unknown illness, with an unknown disease. Course, you know 0:01:48.640 --> 0:01:51.440 how much sick of do? At what point do I 0:01:51.480 --> 0:01:55.040 come back? So David and his colleagues start thinking about 0:01:55.040 --> 0:01:58.000 a way they can monitor COVID patients safely from their homes, 0:01:58.440 --> 0:02:00.880 and they settle on the idea of creating an app. 0:02:01.160 --> 0:02:03.880 My team has a lot of expertise and remote patient monitoring, 0:02:04.000 --> 0:02:08.040 so we developed an app in something like or thirty 0:02:08.120 --> 0:02:12.400 six hours, launched it. We said, here's a hotline. If 0:02:12.440 --> 0:02:16.080 you're having symptoms, call this number. The app proms uses 0:02:16.160 --> 0:02:19.080 to answer simple questions like whether they have a fever 0:02:19.280 --> 0:02:23.200 or a cough. David says, pretty soon hundreds and then 0:02:23.320 --> 0:02:27.040 thousands of patients are being monitored this way. Then around 0:02:27.120 --> 0:02:30.639 mid April, as strange pattern emerges for all, we started 0:02:30.680 --> 0:02:36.280 seeing this cluster of people who were expressing different symptoms 0:02:37.080 --> 0:02:41.079 patients report diligently on the app. At first, they were 0:02:41.080 --> 0:02:44.440 predominantly complaining of headaches, fevers, and shortness of breath, But 0:02:44.720 --> 0:02:48.320 suddenly they are symptoms more. Now they were talking about 0:02:48.360 --> 0:02:52.240 dizziness and fatigue, and I can't seem to exercise the 0:02:52.240 --> 0:02:55.480 way I used to, and you know, there's something about 0:02:55.520 --> 0:02:57.560 this that can't shake. And my heart feels like it's 0:02:57.600 --> 0:03:00.960 beating out of its chest, and you know, arms are tingling, 0:03:01.240 --> 0:03:03.200 my feet are going blue, you know, all of these 0:03:03.760 --> 0:03:09.000 very odd symptoms. What was immediately striking to me was 0:03:09.080 --> 0:03:12.160 just how similar all of these how random these accounts were, 0:03:12.280 --> 0:03:16.160 but really similar, David says. What's also bizarre is that 0:03:16.360 --> 0:03:21.240 almost all of these patients were never hospitalized. A common narrative, 0:03:21.400 --> 0:03:25.240 in fact, is yeah, I got it. I was fine, 0:03:25.639 --> 0:03:30.800 you know, I was more or less asymptomatic, um, you know, 0:03:31.560 --> 0:03:33.640 and I didn't think there was anything to worry about. 0:03:34.200 --> 0:03:37.360 And then two weeks after my symptoms went away, I 0:03:37.440 --> 0:03:40.760 got hit with this. What David is describing Harold's the 0:03:40.760 --> 0:03:43.280 start of his journey into trying to understand long COVID. 0:03:43.800 --> 0:03:45.760 He would go on to search for ways to help 0:03:45.800 --> 0:03:48.560 the millions of people across the world dealing with symptoms 0:03:48.880 --> 0:03:53.000 months after their coronavirus infection. Many patients are caught in 0:03:53.000 --> 0:03:56.800 a sort of medical purgatory where their problems aren't understood, 0:03:57.160 --> 0:04:01.000 much less treated, and the advice they get is well, 0:04:01.160 --> 0:04:04.080 not always reliable. If anyone tells you that they know 0:04:04.160 --> 0:04:07.600 what's going on, they're lying to like, don't trust that person. 0:04:08.040 --> 0:04:10.160 That's the one person you can't trust is the person 0:04:10.200 --> 0:04:13.160 who tells you categorically they know what's going on. And 0:04:14.240 --> 0:04:17.920 I've certainly seen a lot of clinicians doing that. As 0:04:17.960 --> 0:04:20.560 scientists rushed to figure out the causes of long COVID, 0:04:20.960 --> 0:04:24.200 some health providers aren't waiting for answers. There are already 0:04:24.240 --> 0:04:28.720 finding ways to help patients now. I'm Jason Gale, chief By, 0:04:28.760 --> 0:04:31.919 a security correspondent and a senior editor at Bloomberg News 0:04:32.480 --> 0:04:53.640 from the Prognosis podcast. This is breakthrough and they told 0:04:53.680 --> 0:04:56.200 my family she's not going to make it, and so 0:04:56.279 --> 0:04:59.080 you need to come in and say yo, goodbyes. Billie 0:04:59.120 --> 0:05:01.840 McCarthy could it bad case of COVID? Back in February 0:05:01.880 --> 0:05:04.600 this year, Kelly is a fifty one year old grandmother 0:05:04.640 --> 0:05:07.360 from a town in Massachusetts amount twenty miles southwest of 0:05:07.400 --> 0:05:12.080 Boston called Foxboro. Soon after falling ill, Kelly couldn't move. 0:05:12.440 --> 0:05:14.279 I couldn't even get out of bad. My husband's like, 0:05:14.360 --> 0:05:16.080 I have to throw you over my shoulder. You're going 0:05:16.240 --> 0:05:19.040 urgent care, which is good because when I got there, 0:05:19.080 --> 0:05:22.640 my oxygen was below seventy, which I guess is bad. 0:05:23.720 --> 0:05:27.039 Kelly's condition deteriorated fast once she got sick. It got 0:05:27.120 --> 0:05:29.440 so bad that she had to be introbrated and put 0:05:29.440 --> 0:05:33.040 into an induced coma. She couldn't breathe on her own. Eventually, 0:05:33.240 --> 0:05:35.360 she was given a tracking ostomy so a tube could 0:05:35.360 --> 0:05:38.960 be inserted directly into her windpipe, but the prognosis was 0:05:39.000 --> 0:05:41.680 still grim, and doctors thought Kelly would need a double 0:05:41.760 --> 0:05:45.679 lung transplant. That wasn't needed in the end, and after 0:05:45.720 --> 0:05:50.039 two months in three hospitals, she was eventually released. But 0:05:50.240 --> 0:05:54.880 the second chapter of Kelly's COVID story was just beginning. Hospitals, 0:05:55.160 --> 0:05:58.920 medical tests, and chronic disability have turned her world upside down. 0:06:00.040 --> 0:06:04.800 Kelly's main deficits are neurological. She can't feel her fingertips, 0:06:05.160 --> 0:06:09.480 and she's suffering memory problems. Kelly's doctors are familiar with 0:06:09.480 --> 0:06:12.800 her symptoms but she says it's not always so easy 0:06:12.920 --> 0:06:16.240 for long haulers to get good medical advice. I go 0:06:16.320 --> 0:06:20.479 over to the COVID clinic um to meet with all 0:06:20.520 --> 0:06:25.800 the people there, because if you go to a regular 0:06:25.839 --> 0:06:28.240 doctor with you know this is the problem, they're gonna 0:06:28.320 --> 0:06:32.240 look at it like a normal symptom of a normal thing. 0:06:33.279 --> 0:06:35.520 Kelly is referring to an outpatient clinic at that bring 0:06:35.600 --> 0:06:38.880 him in Women's Folking Hospital in Boston. It's been four 0:06:38.920 --> 0:06:41.359 months since she was discharged, and Kelly goes there for 0:06:41.400 --> 0:06:44.520 follow up treatment. Today she's sitting in the park across 0:06:44.560 --> 0:06:48.000 the street after seeing her doctor. Her recovery, she says, 0:06:48.480 --> 0:06:51.279 is still touch and go, like today, I'm having a 0:06:51.320 --> 0:06:55.560 good day, yesterday and Saturday or terrible. I can't grasp 0:06:55.680 --> 0:06:59.440 the words I need. Um, I get confused what I'm saying. 0:06:59.480 --> 0:07:02.600 It's almost my brains working way over time, and my 0:07:02.640 --> 0:07:06.880 mouth isn't working nearly fast enough. The problem extends to 0:07:06.960 --> 0:07:11.560 her short term recall and cognition. I forget things all 0:07:11.600 --> 0:07:15.160 the time, Like I'll look at one page and then 0:07:15.160 --> 0:07:17.480 I'll look to another page to put what it was 0:07:17.520 --> 0:07:19.400 I saw on this page, and I have to keep 0:07:19.440 --> 0:07:23.360 flipping back and forth several times. I've even been known 0:07:23.400 --> 0:07:26.320 to write it on my hands so I don't have 0:07:26.360 --> 0:07:30.000 to keep flipping by. These are having a monumental impact 0:07:30.080 --> 0:07:33.760 on Kelly, who before COVID was an insurance claims adjusta 0:07:34.040 --> 0:07:37.160 working out who is what after an injury? And I've 0:07:37.320 --> 0:07:41.040 never been the poster girl for for Strong Memory ever, 0:07:41.720 --> 0:07:44.400 but this is like this, This is what makes it 0:07:44.440 --> 0:07:48.080 difficult to go back to work because I have to know, 0:07:48.760 --> 0:07:52.040 I have to be on the money, so to speak. Um, 0:07:52.080 --> 0:07:54.920 Because if I'm talking to an attorney about their clients 0:07:54.920 --> 0:07:59.400 and their clients injuries and how much you know, the 0:07:59.440 --> 0:08:03.760 whole big picture is worth and to negotiate, if I 0:08:03.840 --> 0:08:09.120 can't remember every little pod and peanut, then it's gonna 0:08:09.120 --> 0:08:12.160 be hard to negotiate with them. Oh, your your client 0:08:12.240 --> 0:08:17.160 broke is lead. No, actually they sprain their thumb, but okay, 0:08:17.640 --> 0:08:19.680 you know, and I can't do that one. It's one. 0:08:19.720 --> 0:08:24.120 It's embarrassing too. It's bad for the company to have 0:08:24.320 --> 0:08:31.080 people like that trying to settle claims there. It's embarrassing. Um, 0:08:31.240 --> 0:08:34.360 you know. So it's just like I can't do and 0:08:34.400 --> 0:08:36.880 I hate to say this, I can't do anything important 0:08:37.800 --> 0:08:44.559 because I can't I just can't yet. Kelly says that 0:08:44.640 --> 0:08:49.800 her neurological issues also affect her driving. Get easily distracted, 0:08:50.240 --> 0:08:52.280 and then I'll notice my car is going like this, 0:08:52.559 --> 0:08:55.080 or I'll be walking and I'm shaking, and that sort 0:08:55.080 --> 0:08:59.080 of goes into the car with me. I almost hit 0:08:59.120 --> 0:09:01.120 a car on this eat the other eggause I didn't 0:09:01.120 --> 0:09:02.800 even see it till I was right there. And that's 0:09:02.800 --> 0:09:07.480 when I went home. And what road today. The symptoms, too, 0:09:07.600 --> 0:09:11.800 came manifest at all hours. Another source of Kelly's distress 0:09:11.920 --> 0:09:15.240 is the difficulty she has sleeping. A lot of that 0:09:15.240 --> 0:09:17.080 has to do with the six weeks she spent in 0:09:17.120 --> 0:09:21.600 a drug induced coma. Although heavily sedated, she was still 0:09:21.640 --> 0:09:24.400 able to connect with some aspects of being intubrated in 0:09:24.440 --> 0:09:28.040 the ICU, but not make sense of them. And this 0:09:28.160 --> 0:09:35.760 delirium generates persistent nightmares, awful awful, awful nightmares. And but 0:09:36.240 --> 0:09:41.640 I wasn't so sedated that reality wasn't coming in, so 0:09:41.760 --> 0:09:46.080 like things were coming in from my reality, mixing into 0:09:46.120 --> 0:09:52.120 the dream and making it worse. Hell. He says that 0:09:52.240 --> 0:09:56.240 early on, fear of these nightmares kept her from falling asleep. 0:09:56.800 --> 0:09:58.360 I was afraid I was going to have the dreams. 0:09:58.360 --> 0:10:00.240 And I was having the dreams that I was having 0:10:00.240 --> 0:10:02.960 in the column, and now my dreams are if I 0:10:03.040 --> 0:10:06.840 start having a weird dream, a wake up and beating 0:10:06.840 --> 0:10:08.360 on my husband, they're trying to put me in a 0:10:08.440 --> 0:10:12.680 colma again. No they're not, they're not. No, go to sleep, Okay, 0:10:12.960 --> 0:10:17.079 so I do, but it's a weird feeling. Think about 0:10:17.080 --> 0:10:19.600 this from the doctor's point of view. Your patients are 0:10:19.640 --> 0:10:22.679 coming to you with a slew of conditions that may 0:10:22.720 --> 0:10:25.959 not even seem related. Their short term memory is failing, 0:10:26.200 --> 0:10:30.480 they're having horrible nightmares, they shake. It's hard to imagine 0:10:30.600 --> 0:10:45.200 where to start. But David Petrino, the starting point for 0:10:45.320 --> 0:10:48.439 understanding how to treat long COVID is the patient data 0:10:48.679 --> 0:10:51.480 coming in on his app. There's a pattern emerging that 0:10:51.640 --> 0:10:55.480 offers some clues. For instance, these long haulers share some 0:10:55.520 --> 0:11:00.520 common features. What we're seeing is a medium age of 0:11:01.240 --> 0:11:07.360 forty two. Um. About of the patients who come to 0:11:07.480 --> 0:11:12.480 us are women, So I'd say it's about fifty fifty 0:11:12.520 --> 0:11:16.120 two people who had like some sort of significant medical 0:11:16.200 --> 0:11:20.400 history versus just fit and healthy and used to run 0:11:20.400 --> 0:11:24.280 marathons and keeps in good shape. And all of these 0:11:24.320 --> 0:11:28.720 sorts of things. In the fall of David and his colleague, 0:11:28.760 --> 0:11:32.000 doctor z gan Chan, set up a rehabilitation service for 0:11:32.040 --> 0:11:35.440 COVID survivors at Mount Sinai. They call it the Center 0:11:35.520 --> 0:11:38.480 for Post COVID Care. But at first they need to 0:11:38.480 --> 0:11:42.120 figure out which patients will see which clinicians. So David 0:11:42.160 --> 0:11:45.319 says to his colleague, Hey, here's what we're gonna do. 0:11:46.280 --> 0:11:48.840 If you're examining someone and they've got a bunch of 0:11:48.840 --> 0:11:53.679 symptoms and you can scan them, take their blood, look 0:11:53.720 --> 0:11:56.280 at their organs and say, this is the proximate cause 0:11:56.280 --> 0:11:59.280 of your symptoms. This is it. We we know what 0:11:59.400 --> 0:12:03.400 this is um and it's because of COVID, but we 0:12:03.440 --> 0:12:08.400 can see it. It's on a scan you take them. 0:12:08.440 --> 0:12:12.440 If you have someone showing up with a laundry bag 0:12:12.440 --> 0:12:15.040 of symptoms and you can't see a single thing on 0:12:15.080 --> 0:12:19.880 their scan that would explain all of these symptoms, that 0:12:20.040 --> 0:12:22.680 to me is what we're going to call post acute 0:12:22.960 --> 0:12:27.280 COVID syndrome PACKS. And that was that was the term 0:12:27.320 --> 0:12:30.880 we we coined in April, and we said we're calling 0:12:30.880 --> 0:12:34.600 it packs, and they'll come to us and off we go. 0:12:35.679 --> 0:12:40.560 Patients with medically explainable ailments are managed by pulmonologists, cardiologists, 0:12:40.559 --> 0:12:44.040 and other relevant specialists. But then there are the long 0:12:44.120 --> 0:12:48.559 haulers whose symptoms can't be easily explained. David knows their 0:12:48.600 --> 0:12:52.120 conditions fall under a broad umbrella of needs, so he 0:12:52.280 --> 0:12:55.360 brings together a team of doctors and allied health practitioners 0:12:55.400 --> 0:12:58.520 with different expertise. They work with him to come up 0:12:58.559 --> 0:13:03.920 with strategies to help manage their patients specific problems. There's 0:13:03.920 --> 0:13:07.280 a cardiologist who specializes in how viruses affect the heart. 0:13:07.760 --> 0:13:11.560 There's a nutritionist who helps patients with food sensitivities. A 0:13:11.600 --> 0:13:15.520 couple of physiatrists. These are medical doctors who treat pain. 0:13:16.080 --> 0:13:19.280 And there's a doctor of physical therapy and she is 0:13:19.360 --> 0:13:23.440 focused entirely on, you know, treating people who have close 0:13:23.520 --> 0:13:27.319 concussion syndrome, again, something that looks very very similar. You've 0:13:27.360 --> 0:13:32.480 got heart palpitations, you've got difficulty with exercise and exertion. 0:13:33.640 --> 0:13:37.520 Then there's Josh Dunt's formal naval special oms guy who 0:13:37.600 --> 0:13:40.839 disarmed bombs for a living. He tells David that some 0:13:40.880 --> 0:13:44.160 long COVID patients are displaying symptoms of something it's seen 0:13:44.200 --> 0:13:48.160 in the military. It's called hypercapnia, which means a lack 0:13:48.200 --> 0:13:50.800 of carbon dioxide in the blood. It can be the 0:13:50.840 --> 0:13:53.880 result of deep or rapid breathing and can cause a 0:13:54.000 --> 0:13:57.600 tingling sensation in the limbs, as well as a normal heartbeat, 0:13:57.800 --> 0:14:01.240 muscle cramps, and anxiety. For this, he had seen this 0:14:01.320 --> 0:14:06.680 sort of symptom cluster before UM and it had taken 0:14:06.679 --> 0:14:10.560 the form of hypercapnea in in You know, fighter pilots 0:14:10.600 --> 0:14:14.400 who had pulled too many g's and we're having a 0:14:14.400 --> 0:14:18.520 physiological response to that, and their CEO two would drop, 0:14:19.040 --> 0:14:22.240 get heart palpitations, they get dizziness, they get these attacks. 0:14:23.080 --> 0:14:27.320 Josh tells David to test patients carbon dioxide levels. Sure enough, 0:14:27.320 --> 0:14:30.840 a large proportion of our patients were hypercapnic. Josh works 0:14:30.840 --> 0:14:33.760 in a breathing regiment to increase patients CEO two tolerance. 0:14:34.200 --> 0:14:38.680 It involves changing the duration of inhalations and exhalations, with 0:14:38.800 --> 0:14:42.800 the net effect of expelling less carbon dioxide. David says 0:14:42.880 --> 0:14:46.120 he doesn't know the underlying cause of patient's hypercapnea, but 0:14:46.280 --> 0:14:51.080 the technique helps. Again, this leads back to pat physiology, 0:14:51.080 --> 0:14:53.360 and it's it's a bit of a blank slate, but 0:14:54.080 --> 0:14:58.520 we know that when we increase people's SERO two levels, 0:14:58.560 --> 0:15:03.080 an edge comes off of symptoms. In most cases, figuring 0:15:03.080 --> 0:15:06.320 this out has given patients a way of controlling their symptoms. 0:15:06.920 --> 0:15:09.200 David says that if they feel an attack coming on, 0:15:09.680 --> 0:15:13.000 they can rein in these manifestations faster by focusing on 0:15:13.040 --> 0:15:16.080 their breathing for a couple of minutes. Psychologically, that's a 0:15:16.120 --> 0:15:18.680 big big deal, you know, just being able to say 0:15:18.680 --> 0:15:22.080 I have control over this, as opposed to I have 0:15:22.120 --> 0:15:24.680 almost fainted and I have no idea why, you know 0:15:24.800 --> 0:15:28.160 like that, that is a horrifying feeling to be somewhere 0:15:28.200 --> 0:15:31.000 public and feel like you're going to pass out and 0:15:31.080 --> 0:15:33.960 have no understanding of what's happening to your body. You 0:15:34.000 --> 0:15:35.920 don't want to go to the emergency department for the 0:15:35.960 --> 0:15:39.240 fifth time because you know they're just gonna test everything 0:15:39.240 --> 0:15:42.280 they've already test, give you an I V for hydration, 0:15:42.920 --> 0:15:44.800 and then send you on your way with probably a 0:15:44.840 --> 0:15:47.880 five grand bill. Pulling together a team of specialists with 0:15:47.960 --> 0:15:51.240 wide ranging skills and knowledge is one thing, but getting 0:15:51.240 --> 0:15:54.880 these experts to work collectively to actually help long haulers 0:15:55.080 --> 0:15:57.760 is another. One of the first things David needs to 0:15:57.760 --> 0:16:00.480 figure out is how exactly he's going to offer the 0:16:00.560 --> 0:16:04.280 kind of coordinated holistic care patients need, and then he 0:16:04.320 --> 0:16:06.520 needs to work out how that's going to be delivered. 0:16:07.120 --> 0:16:10.280 Many of his patients are so debilitated that frequent face 0:16:10.360 --> 0:16:14.240 to face therapy sessions just aren't an option. What was 0:16:14.440 --> 0:16:19.360 alarming to me was how, because the medical system is 0:16:19.400 --> 0:16:23.920 really hyper specialized here, um, how many people would just 0:16:25.080 --> 0:16:29.640 be bounced from specialist to specialists without anyone offering a 0:16:29.680 --> 0:16:35.000 treatment or anyone offering a plan. And it was almost 0:16:35.040 --> 0:16:38.920 like a game. You know, Oh, you got sent to me. No, no, no, 0:16:38.960 --> 0:16:42.640 you've got g I symptoms. You know, here's the gastro intrologists. 0:16:42.680 --> 0:16:46.280 You get to the gastro intrologists. Oh, you've got a headache. 0:16:46.680 --> 0:16:49.240 That's a neurology problem. If you go to the neurologist, 0:16:50.480 --> 0:16:53.920 patients typically have to wait three weeks for a specialty appointment. 0:16:54.520 --> 0:16:58.520 Many aren't working, and their insurance is running out, and 0:16:58.640 --> 0:17:01.960 all of this is compared outting their stress. Often by 0:17:01.960 --> 0:17:05.439 the time they made it to our clinic, they're so overwrought, 0:17:06.119 --> 0:17:10.720 um that it's it's a miracle that they're still standing, 0:17:11.200 --> 0:17:16.000 let alone managing this highly debilitating condition. There are no 0:17:16.160 --> 0:17:20.000 established practices and protocols to follow with long COVID patients 0:17:20.000 --> 0:17:23.439 aren't fitting into neat boxes. David finds that you have 0:17:23.560 --> 0:17:26.840 to start with the basics. It's trial by error and 0:17:26.880 --> 0:17:30.360 there are no guarantees of success. He says, being upfront 0:17:30.400 --> 0:17:33.399 and telling patients that from the outset is actually a 0:17:33.440 --> 0:17:36.480 source of comfort, just being able to say, you know what, 0:17:37.520 --> 0:17:39.679 this is what we think is going on. And we 0:17:39.720 --> 0:17:42.600 would always lead with so much uncertainty, like there was 0:17:42.640 --> 0:17:46.760 no this is what's happening to you. It is, here's 0:17:46.800 --> 0:17:49.280 what we think is going on. It's an entirely novel virus. 0:17:49.440 --> 0:17:52.679 I can tell you that I've spoken to a thousand 0:17:52.760 --> 0:17:56.800 other people who have symptoms just like yours. Here's what 0:17:56.920 --> 0:18:00.399 we think is happening, and here's how we're gonna manage 0:18:00.400 --> 0:18:03.600 a few things in the moment. And if these things 0:18:03.600 --> 0:18:05.800 don't work, come back to me, because then we're going 0:18:05.880 --> 0:18:12.800 to try these things. It's really leading with vulnerability. But um, 0:18:12.840 --> 0:18:15.560 all of the patients that we saw which just would 0:18:15.560 --> 0:18:18.520 appreciate it so much to just be like, thank you, 0:18:18.640 --> 0:18:22.399 thank you for not being overconfident, thank you for not 0:18:22.520 --> 0:18:26.720 dismissing my symptoms, thank you for taking a multi system approach. 0:18:36.480 --> 0:18:39.440 David takes that same level of honesty into the two 0:18:39.440 --> 0:18:42.000 clinics he runs of along Haulers in New York City. 0:18:42.560 --> 0:18:46.479 The centers are essentially big, open rooms with various pieces 0:18:46.480 --> 0:18:52.600 of equipment ranging from you know, robotic tilt tables that 0:18:52.640 --> 0:18:58.639 allow us to you know, specifically calibrate exercise for the 0:18:58.960 --> 0:19:02.520 very very severe cases all the way out to treadmills 0:19:02.520 --> 0:19:04.520 for the people who are getting to the point where 0:19:04.560 --> 0:19:08.359 we can start pushing them. There are also devices for 0:19:08.400 --> 0:19:13.000 taking patient measurements, blood pressure cuffs, wholes eximters, and instruments 0:19:13.040 --> 0:19:18.040 to check for hypercapnia. We've got a set of things 0:19:18.080 --> 0:19:21.560 called friends All goggles which allow us to measure the 0:19:21.640 --> 0:19:26.040 vestibular system, your balance system that can identify autonomic nervous 0:19:26.080 --> 0:19:29.400 system problems occurring in patients when they go from sitting 0:19:29.560 --> 0:19:33.240 to standing. For example, the autonomic nervous system being part 0:19:33.320 --> 0:19:35.680 of your nervous system that does all of the things 0:19:35.760 --> 0:19:37.760 that you usually don't need to think about. You know, 0:19:37.800 --> 0:19:39.840 when you should feel hot, when you should feel cold, 0:19:39.880 --> 0:19:42.119 when you should sweat, when your heart should beat, when 0:19:42.160 --> 0:19:46.320 you should breathe, and when that gets disordered, that's when 0:19:46.400 --> 0:19:50.119 all of these odd symptoms start to emerge. Changing body 0:19:50.160 --> 0:19:52.919 positions is often one of the biggest ways to stress 0:19:52.960 --> 0:19:56.680 the autonomic nervous system. David says it's quite a challenging 0:19:56.760 --> 0:20:02.000 thing logistically to get all of the blood vessels to 0:20:02.080 --> 0:20:05.800 open and close and blood pressure to regulate as you're 0:20:06.280 --> 0:20:09.879 moving from sitting to standing. That's actually a really challenging 0:20:09.920 --> 0:20:14.080 thing to do. That Your body does automatically until a 0:20:14.160 --> 0:20:16.840 virus or something or some form of trauma knocks it 0:20:16.880 --> 0:20:19.240 out of balance, and then all of a sudden it 0:20:19.320 --> 0:20:23.640 forgets how to do that. Rehab isn't slow and often 0:20:23.680 --> 0:20:28.880 frustrating process that takes easily days. We start with prehab, 0:20:28.920 --> 0:20:32.960 which is breathwork, so you know, first things first, we 0:20:33.040 --> 0:20:36.560 just make sure that everyone is working on just getting 0:20:36.560 --> 0:20:39.480 their blood gases in a place where they feel like 0:20:39.480 --> 0:20:42.720 they have their symptoms under control. David says that it 0:20:42.800 --> 0:20:45.320 sounds really basic, but it changes to the way you 0:20:45.400 --> 0:20:48.919 breathe and the natural rhythm of your breath have different 0:20:48.920 --> 0:20:52.320 effects on the body. We heard about the technique for hypercapnia, 0:20:52.640 --> 0:20:55.600 but there are others. You know, there's one one protocol, 0:20:55.640 --> 0:21:00.439 for instance, it's called box breathing, which is one of 0:21:00.440 --> 0:21:05.639 the fastest ways to regulate your parasympathetic nervous system. So 0:21:05.680 --> 0:21:07.399 we'll bring your heart right down, it'll bring your blood 0:21:07.400 --> 0:21:10.960 pressure down, and he'll do it quickly. Um. And so 0:21:11.600 --> 0:21:14.520 you know, finding the right breath work protocol for the 0:21:14.600 --> 0:21:17.320 right set of symptoms can sometimes be a bit of 0:21:17.320 --> 0:21:22.480 trial and error, but these things have measurable physiological effects 0:21:22.640 --> 0:21:26.880 and so they can be really powerful. After breathwork, patients 0:21:26.960 --> 0:21:29.800 moved to the first step of the rehab program. In 0:21:29.840 --> 0:21:33.320 most cases, it involves line flight on your back, so 0:21:33.400 --> 0:21:39.200 you're fully recumbent and we just getting gentle leg movements 0:21:39.480 --> 0:21:46.120 going at this point. In most cases, our patients aren't 0:21:46.119 --> 0:21:48.560 their heart rate isn't stable enough for us to use 0:21:48.600 --> 0:21:52.720 heart rate as a guide, so we actually use a 0:21:52.840 --> 0:21:55.520 scale called the Boord scale, which allows you to rate 0:21:55.600 --> 0:21:59.600 received exertion how hard you think you're working. And you know, 0:21:59.640 --> 0:22:02.680 if you think of the scale of you know, once 0:22:02.800 --> 0:22:05.560 ten where well zero to ten where zero is nothing 0:22:05.600 --> 0:22:09.560 and and tenders maximal as hard as you could possibly 0:22:09.600 --> 0:22:14.360 think you're working. Um, we don't let anyone exceeded too 0:22:15.320 --> 0:22:18.560 from their patients move slowly into a more upright position 0:22:18.920 --> 0:22:22.399 and the intensity gradually increases. We get them to a 0:22:22.440 --> 0:22:25.000 point where we actually can use their heart rate as 0:22:25.040 --> 0:22:27.480 a guide. Their heart rate has started to regulate. It's 0:22:27.480 --> 0:22:30.600 not racing all the time and ramping up and ramping down. 0:22:30.640 --> 0:22:32.800 It's starting to regulate, so we can now use it 0:22:32.840 --> 0:22:36.840 as a guide to you know, um, paced the exercise 0:22:36.880 --> 0:22:39.720 the way that we want to. We're now calling it exercise. 0:22:40.359 --> 0:22:42.679 David says that up until this point, the goal of 0:22:42.760 --> 0:22:47.000 the rehabilitation is to slowly condition the autonomic nervous system 0:22:47.160 --> 0:22:49.960 so it gets used to being challenged. What we're trying 0:22:50.000 --> 0:22:56.600 to do is just stress the body enough that the 0:22:57.119 --> 0:22:59.400 that the body has to react. So your heart rate 0:22:59.400 --> 0:23:02.640 needs to read is up. Maybe you need to breathe slightly, 0:23:02.680 --> 0:23:06.560 you know, slightly more. Your respiratory rate might increase by 0:23:06.720 --> 0:23:11.320 one breath per minute. You know, we're talking very little. Um. 0:23:11.440 --> 0:23:15.000 Your body temperature may change slightly, but you're not really 0:23:15.960 --> 0:23:19.840 doing anything difficult. The center tries to help patients within 0:23:19.880 --> 0:23:23.040 the limits of what their insurance will cover. David says 0:23:23.119 --> 0:23:26.040 that usually means capping sessions at two a week, and 0:23:26.080 --> 0:23:28.000 if someone is quite severe, it will be three times 0:23:28.000 --> 0:23:31.640 a week. We tried to do from home where possible 0:23:31.840 --> 0:23:37.320 because um, you know, you just heard what I described right, 0:23:37.400 --> 0:23:40.920 Laying flat on your back and moving your legs. All 0:23:40.920 --> 0:23:42.400 of that is blown out of the water. If I'm 0:23:42.400 --> 0:23:44.720 asking you to leave your apartment and come see me 0:23:44.760 --> 0:23:50.119 in Manhattan, you know, like, that's that's exertion. So you know, 0:23:51.080 --> 0:23:55.480 we we do our absolute best to try to to 0:23:55.880 --> 0:24:01.160 reduce burden on the patient, both financial and physical. Somewhere 0:24:01.200 --> 0:24:06.440 around day one, patients are typically able to work at 0:24:06.440 --> 0:24:10.159 their maximum heart rate. They're on a treadmill or a 0:24:10.200 --> 0:24:13.440 bike or whatever is comfortable for them, and they're getting 0:24:13.440 --> 0:24:16.720 a workout, and that's usually the point where we're like, okay, well, 0:24:17.240 --> 0:24:19.880 these are all your triggers, these are the behaviors, these 0:24:19.920 --> 0:24:22.160 are things to avoid, these are the things to encourage. 0:24:23.320 --> 0:24:26.879 Keep going with the exercise. Every day. There are graduates 0:24:26.880 --> 0:24:31.120 from the program, which is encouraging. I'd say we've at 0:24:31.119 --> 0:24:34.440 this point successfully discharged a few dozen, so probably fifty 0:24:34.520 --> 0:24:39.240 or sixty to the point where they're happy to move on. 0:24:39.600 --> 0:24:43.359 We're happy to let them go. Um. But then yeah, 0:24:43.359 --> 0:24:46.360 there's a large number of people just still in ongoing rehab. 0:24:47.000 --> 0:24:50.520 But for some their symptoms come back after months of treatment, 0:24:51.080 --> 0:24:54.360 and David says that raises questions about the long term 0:24:54.359 --> 0:24:58.159 trajectory for long haulers. Some of our patients who have 0:24:58.200 --> 0:25:02.040 been discharged for the longest their experience relapses. So, you know, 0:25:02.760 --> 0:25:05.160 we need to understand the path of physiology to understand 0:25:05.160 --> 0:25:06.639 how long is this going to be going on for? 0:25:07.400 --> 0:25:09.199 How long are people are going to be symptomatic for. 0:25:09.480 --> 0:25:12.159 Is this something you're gonna have to manage for your 0:25:12.280 --> 0:25:14.359 entire life, or is this something that you're gonna have 0:25:14.400 --> 0:25:17.000 to manage for the next five to ten years. Or 0:25:17.119 --> 0:25:19.919 is this something that we can rehabilitate and we'll just 0:25:20.040 --> 0:25:21.560 charge you and you will never have to think about 0:25:21.600 --> 0:25:24.640 it again. So these are all open questions right now. 0:25:25.800 --> 0:25:29.480 Unlike ASMIR on diabetes, long COVID isn't a chronic disease 0:25:29.520 --> 0:25:32.440