Good evening, ladies and gentlemen. Welcome. so guys, if you don’t know me, my name is Noah Greenspan. I’m the director of the pulmonary wellness and rehabilitation center. I am the founder of the pulmonary wellness foundation in New York city. I’m here with Karen Biscoff firefighter, firefighter paramedic COVID survivor long hauler and best long white, who is my administrator from ultimate pulmonary wellness foundation on Facebook. So the reason why we started this group or kind of have taken a slant towards COVID over the last several months, we’ve, we’ve had a group like this for years and it’s been very successful in the sense that we’ve been able to really provide a lot of information to people. And COVID kind of hit us, obviously like a hurricane. And you know, whereas I wouldn’t say that anybody is quite an expert on COVID yet.
I do think that we’ve been very good at kind of helping people navigate stress, anxiety, and things like that. So if nothing else, you know, part of our goal here is to let you know that a you’re not alone. Obviously many, many people are going through the same thing as you, but we want to talk about certain aspects of COVID. And if, you know, certainly we’re going to answer a lot of questions, but if the answer to the question is unknown, we’re going to say that if, if I don’t know the answer we’re going to say that too, but the good news is over the next several weeks, we have tippy top experts in each specialty that are dealing with COVID and that are publishing in top journals about their experience with COVID. So rest assured a lot of the answers tonight are going to be, I don’t know, or we don’t know when I say, I don’t know what means, I don’t personally know when I say we don’t know.
I mean, it’s generally not known or unclear. But when I, you know, certainly we’re going to be making a list of things. And in the next two weeks alone, we have two pulmonologists. We have a cardiologist, we have a gastroenterologist and we have a neurologist all treating COVID in New York city. And we’re going to keep just building that list of great physicians who are like in the thick of it. And so, you know, bear with us you know, certainly we want to provide to you as much support as we can. And if we don’t know the answers to the questions, we will definitely get the answers to the questions and get the right people here. So one thing I ask, it’s not mandatory, but it’s always nice to see people’s faces. So if you don’t mind turning on your camera by all means, please do. If you do mind, or if you’re in otherwise in witness protection or hiding from you know, the, the, the government in some way, we won’t say anything. But we’re going to get it started tonight. This is for you. We want you to benefit from it. Karen’s gonna start us off with some of the questions we’ve received and then we’ll open up to a discussion as we move along. That’s it. So we’re ready to roll.
Hey guys. Sorry. I have a little bit of a lag in my computer, so I hope it’s not on your end. So the first question I want to ask tonight, somebody submitted it. Okay.
Are we go before you start guys? I just also want to say, if you haven’t yet Karen has been working for, is it months already on a survey that is re a month, which is really important. It’s, it’s one of the first surveys for people who either have been diagnosed with COVID and confirmed or have COVID symptoms that aren’t confirmed. So we’re going to post that info in the chat if you have not yet. And we’ll also post it later in an email that we send. If you haven’t filled it out yet, please fill it out. This is crucial in terms of getting information and getting data. Sorry, Karen,
All good. When I get short of breath, I noticed my heart rate is dropping. Is it possible that communication between my heart lungs and brain is not working as well as they should post COBIT.
Okay. So great question. Very common that we see this. Okay. so a lot of patients are asking this question. So I get short of breath. Many patients have shortness of breath, many patients report a Rhythmia. So when we talk about a Rhythmia, we’re talking about any type of abnormality with the heart. When we talk about a fast heart rate, it’s called tachycardia higher than a hundred beats per minute. Slow heart rate is, is bradycardia less than 60. The more common way that that things occur. So when the scent, when the autonomic nervous system is functioning properly, as we become more active, there’s a supply and demand kind of component to it. So as we are sitting here doing nothing, it’s low demand, right? So our heart rate could generally be low. Our blood pressure can be low. Our respiratory rate should be relatively comfortable, but what’s happening is we’re seeing people who are getting short of breath.
And the more common thing that I’ve seen is people whose heart rate is going up. But I am also seeing people whose heart rate is going down, which is more unusual. People are checking their oxygen, saturations and oxygen saturation is a mixed bag. So some people have great oxygen saturation. Some people don’t with Karen. I’ve watched her oximeter at times where it will be a heart rate of 70, 80, 91, 2130, and then cycle back down to one 21, 10 80 with real change in activity. So under normal circumstances, normal exercise physiology is that we do more. Our body responds by increasing cardiac output. It can increase cardiac output by raising the rate or lower or, or raising the amount that it’s pushing out, raising the blood pressure. And that’s supposed to happen linearly with the amount of exercise here. There’s, there’s something that’s being talked about very often, which is called dysautonomia.
And what dysautonomia means. Anytime we see the word dis it means something’s wrong with the system malfunction. Ah, something’s not right problem with it. And Autonoma means the autonomic nervous system. So my experience with dysautonomia is often with patients with pulmonary hypertension and or pots and or other situations where the heart rate, the blood pressure, the oxygen saturation, and other components of the autonomic nervous system don’t work as they should with respect to the amount of activity. So, one thing that’s the surprise for me of that question is what does it mean when your heart rate goes down? When you exercise? That’s a mystery. Okay. That’s a mystery to me as a cardiopulmonary physical therapist for almost 30 years, that’s a super unusual finding, okay, that’s what we want to find out. And that’s something that when the cardiologist is here next week, we’re going to pick their brain about this as much as we can, but with dysautonomia, yes, the problem is that what’s supposed to happen is not happening.
Heart rate, supposed to go up. It may go down heart rate, supposed to come down. It may go up blood pressure. Same thing. One of the commonalities of dysautonomia that we see often is when people stand up, they get dizzy, their heart rate spikes. Their oxygen saturation may remain stable, but they may be short of breath. Their oxygen saturation maybe may come down. There’s a lot of factors that go into the autonomic nervous system and control of heart rate and blood pressure. But let me just give you some basics to see if any of this resonates with you. And at the end, if you have comments on this, I’d be, I’d love to hear them. So the body likes what we call homeostasis. That means it wants the heart rate to be about the same and working at a level consistent with what you’re doing.
The body likes a certain blood pressure. The body likes a certain oxygen saturation. The body likes a certain temperature. Okay? One of the hallmarks of autonomic dysfunction. And one thing, if you look up dysautonomia, it’s going to say the symptoms vary by individual. I’ve never seen a condition vary as much as I’ve seen as COVID varies. COVID it’s like you put your hand in a bag of symptoms and each day it’s like, you pull out a bunch of symptoms and we don’t know what we’re going to get today. Okay? But the body, if you think about position changes, one of the hallmarks of dysautonomia is positional hypotension. So let’s say you’re lying in bed. You’re lying in bed. This is a human being, very skinny, very pale. This is his head, but you’re lying in bed. And the blood is basically going like this. This is a, what we call gravity neutral position, meaning that he’s sideways, right?
So the blood doesn’t go up too much. It doesn’t go down too much. The body gets used to it. You stand up, gravity brings the blood down, and that means less of it returns to the core. And that can drop your pressure. When your body gets the signal that your pressure is dropping, it will usually try to increase cardiac output by increasing your heart rate and increasing the pumping power of your heart. And you will also get a constriction of the blood vessels in the lower extremity to milk everything up. A lot of people with dysautonomia don’t get that. So they stand up their blood pressure plummets. Then their heart rate has to kick up in order to accommodate that. But the question is maybe their heart rate kicks up. And maybe because there’s no filling time, their blood pressure drops. So there’s a lot of things here that are unknown.
Okay. This is not a classic type of thing where we can predict what’s going on. We have to track what’s going on. And we have to see what similarities are there with people. What differences are there with people. And sometimes you’ll see similarities and differences even within the same person from day to day. If your problem is that you’re dropping your blood pressure. One thing that we found very successful with not with COVID patients, but with patients, with pulmonary hypertension, patients, with pots, patients, with other reasons they have orthostatic hypertension is compression socks. And the reason why compression socks work is because they provide a mechanical pressure to the calves. And it doesn’t let that blood all go down. So it helps to maintain the pressure a little bit. So for example, if you were to stand up and you have the pressure socks now doing the work that the vessels are supposed to do, that might help prevent your heart or your blood pressure from dropping.
If it prevents your blood pressure from dropping, it might prevent your heart rate from spiking might. Okay. And one thing I want to say before we go any further, is that again, you hear that’s a complex answer because we’re dealing with a complex condition, please understand it. Nothing that I, or we, or anybody talks about in these meetings is a replacement for your doctor’s care or anything like that. So, anything we talk about, if you think it’s something you might want to try, please run it by your physician first. But I believe compression stockings are going to be a plus in this condition. Karen, have you gotten your compression stockings yet?
No, not yet working on it. All right. So what you just said leads perfectly into the next question with always check with your doctor. A lot of people are asking because COVID causes blood clots throughout the body. A lot of the times you hear, well, you should be on an aspirin regimen. So the question was, should I begin an aspirin regimen to prevent myself from getting clots?
Right. Great question. Okay. Again, this is like, if I were to say this in normal world, the answer might be this or in the normal world, in the real world, the answer would usually be this, or could be this where your doctor might say this in COVID world. We don’t know. Okay. So let me just say this. There’s nothing, there’s not one single treatment that I would say to you, you should be doing at this moment without checking with your physician. Okay. Yes. Clotting is one of the factors that has been found in COVID yes, aspirin does help prevent clots, but we also don’t know the other potential impact that aspirin could have on COVID. So the thing is that nothing should happen in a vacuum, meaning that there’s very few, I would say, there’s nothing you should do that you should just say, Hey, you know what?
I think I’m going to try this without talking to your doctor about it. And I’m not saying that like, to protect myself or anything like that, I’m saying that to protect you. Like a lot of times I talk about this in bootcamp, like people say, Oh, CYA, like I’m trying to see CMA cover myself. No I’m trying to protect you. There are things that we think or things that I think based on my experience that turn out to be completely different than what I read than what I see with patients. Things that are normal physiology are abnormal now. So the answer is whether it’s aspirin or supplements or anything else that you’re thinking, you might try only do it within the overall context of your medical treatment. And there was good news announced recently, which is that Mount Sinai is opening up a pulmonary post COVID clinic.
I think it’s important that people, you know, the medical community really start to share information, which they are and look at the human being as a whole body. Because again, initially we thought it was respiratory, right? Then we thought it was some cardiac. Then we thought it was listen. It’s a mixed bag. And as I say, each time I talk about it with somebody, I view it as a scorched earth, which is that COVID came in, it’s scorch the earth and it affected many, many different systems, gastro cardiology, pulmonary you know Reno one of my closest associates described it like this. He said, whatever weakness you have COVID will exploited it. We’ll find it an exploited. Okay. And I believe this is just my opinion. I have no proof of this. Okay. I’ll do it like bill Maher. I don’t have any proof. I just know it’s true. But I think that there’s a lot of people who probably had conditions that were subclinical, meaning they had absolutely no symptoms of them. And COVID kind of just weaken the system enough to make some of those things pop up.
So the next two questions have to deal with different types of chest pain being felt. So I’m going to combine them. Can you describe what the chest pain means? There’s a sharp shooting, stabbing pain, and then there’s a dull aching pain. There’s a burning pain, which feels like my lungs are being burned with acid. The second question is I’m experiencing dull throbbing, chest pain after physical exertion, but not directly after or during why. So let’s touch on
Another great question. Can I just, as we have each question, could I just see a show of hands? Like if that resonates with anybody, like, if that sounds familiar to anybody. Okay. So chest pain. Okay. So I’m going to talk about normal world chest pain, and then we’re gonna talk about Kobe chest pain. The easiest answer for COVID chest pain is we don’t really know, and that’s why I’m dying to have the cardiologist, you know, come and talk about this left and right when we, and, and Karen is, is also a paramedic. So, you know, part of what I know, I know from, from what my, my regular work and part of it is from EMS, but feel free to jump in if you want. But when we talk about any symptom, okay, there are different characteristics of a symptom that will help figure out what it is.
So chest pain is something that we call like a nonspecific symptom as are many of the symptoms of COVID, which makes it really tough to be diagnostic about it. When we talk about a nonspecific symptom or chest pain is specific, we know what it is. Shortness of breath is specific. We know what it is, but when we say nonspecific, what that means is that it can, it doesn’t point to one specific disease or condition, or even symptom like with chest pain, it could be many different symptoms. Normally we talk about the onset of symptoms. So what were you doing when the symptom came on, some symptoms come on with activity, some symptoms come on, even sitting at rest, and that would be diagnostic or, or at least point in a certain direction. So for example, if you report chest pain after walking up two flights of stairs, well guess what?
That at least points to the cardiovascular system, it’s not a definite, but points us. It leans that way. Right? And if you’ve ever watched house, right? The beauty of house as a diagnostician is that’s the ultimate in differential diagnosis and differential diagnosis means you look at all the different things that it could be. And little by little by little, you start whittling them out until you have a diagnosis in today’s fast paced. Even before COVID, today’s fast paced medical world is very, very knee-jerk. It’s like, Oh, you have wheezing. You have asthma, Oh, you have pain in your hip. You have bursitis. So differential diagnosis for chest pain could be many different things. So what were you doing when it happened? What makes it better and what makes it worse? So, in other words, if you say, when I press on it, it gets worse.
Well, that tells us one thing, if nothing you do or move or anything like that makes it better or worse. It just kind of has its own life that tells you something else. The quality of chest pain is very important. So when somebody says, okay, chest like a stabbing pain, that’s not right. Typically worry worrisome for the heart. So like, for example, I don’t know about you Karen, but when I go to someone’s home, like I look at things kind of like in order of what’s going to be the most dangerous. So I always look cardiac is going to be a big one, right? Because cardiac is life and death. Gas is probably not life and death. So gas can cause chest pain, but I’d rather assume that it’s your heart and have it ruled out and find out it’s that bean burrito you ate at lunch, no harm, no foul.
Then assume it’s gas. And guess what? You are really having a heart attack. So normally with coronary disease, we think about substernal chest pain, pushing pressure, squeezing. When somebody does this, it’s usually their heart. You know, they’re talking about their heart. You can have radiation down the left arm. You could have radiation up the neck or into the jaw. You could have radiation around to the back, back now I’ve had COVID and patients who’ve had all of the above. Okay. All of the above. So I’m sure some is dull. Some is a pressure. Some is a squeezing. Some is a pulling. Some happens when I breathe in, we don’t know the answer. Right. So the answer is we have to find out. And how do you find that out if it were me? Okay. And please let me put this back in context as to something I said last week for COVID long haulers, you guys are between a rock and a hard place in many situations.
Okay? Why you guys got sick in the and by all means I’m open to any suggestions, feedback, comments, you know what I mean? Like you guys know it, you live it, but please, if there’s any feedback you want to share with me at any time, by all means, send me an email or send Karen an email. We’d love to hear it. But you guys got stuck in a situation that the best way to describe it is a mass casualty incident. Right? So world trade center, we had a mass casualty incident where all of a sudden, thousands of people were injured in one event. Okay. Same thing here, except it was much more people. And I can tell you from living in New York city, what happened was the hospitals were so over overblown. And we live in such a densely populated area that if you weren’t going to die, imminently, many people were sent home, right.
And you were sent home and said, well, you know what? We’re not going to put you on event. You don’t need to be admitted to the ICU. You could probably make it through this, right? Because at that time we still thought that it was a mild little cold, or, you know, you get through it in 14 days or this, that the other thing. And a lot of people were sent home for weeks or months to deal with this on their own. And you know, the thing is if you were to have a heart attack or in normal real world, I’m talking about if you were to have a heart attack or bypass surgery or lung surgery or abdominal surgery, the first four to six weeks would be the most crucial time in your rehabilitation because those first four to six weeks, and then the six weeks after that are the time where your body is healing and remodeling.
Okay. Your body has had a big incident to it. Whether it’s a damage to the myocardium, which is the heart like a heart attack, or it’s a surgical procedure is, you know, healing and the way we heal as we scar up, right. Or whether it’s you know, that, that we’re starting to get you more active because we need to inflate your lungs more. That time is really important. And for the first several months of this, you guys weren’t even an afterthought. It was like only we heard about cases and depths. And if it wasn’t death, then you are a survivor. Right. And what many people believe that means is that’s it, that’s a wrap. You’re good to go. You’re cured, you’re healed. And I don’t need to tell you that. We know that that is not the case. So now we’re playing catch up, right.
Chest pain in order of importance, I would want you to see a cardiologist. Okay. Ideally, a cardiologist. Who’s got some experience with COVID, but if not a cardiologist by all means, okay. There, you know, in some places you’re not going to find a cardiologist, who’s treated five COVID patients. Right. But a cardiologist to do some diagnostics, what are the diagnostics? EKG. Okay. Most basic. Okay. But a lot of people have normally kgs stress tests would be helpful. Some people can’t take the stress test, right. Because it’s too vigorous. Some people they have this experience where I walked a block today and I felt great, but then I was in bed for five days. Right. That makes no sense that doesn’t make physiologic sense, which means that something else is going on and that’s what we need to figure out what is happening. And I’m happy to see Mark Mangus here.
My good friend and respiratory therapist Xtrordinair. So if I get stuck, Mark, feel free to jump in. But you know, we have a boot camp. We have an online boot camp, right. And we built this boot camp for people with severe lung disease and severe heart disease. And it’s supposed to be starting at almost nothing, but there are COVID patients who are starting and doing four minutes of exercise and then they’re knocked out for several days. So the question is, why is that? Why is that? It doesn’t make normal physiologic sense. I do have a sense
I say this all the time, but like the idea is that many systems are involved, right? And you’re only really going to get better as quickly as your slowest system. So my hope is, and my encouragement to you is I feel like over time as inflammation goes down, I think the systems will naturally recover in some way. Now I’m not making a, a Trumpian statement here of, you know, Oh, I think this is magically going to disappear. It’s not okay. But what I mean is that I think so much of what people are dealing with is inflammation based. And until that inflammation kind of receives, it’s like, I compare it to like your house being flooded by seawater. Like until that seawater received, there’s no sense, you know, starting the mold remediation, you know what I mean? Because it’s like, the seawater is still there and my gut feeling, and I hope I’m right, is that as inflammation recedes, the systems will naturally have an opportunity to rebound in many cases, not in all cases, but the idea is that we have to kind of move along.
Okay. But not overdo it. So it’s like we take one step today. And if one step is good, even if one step seems super easy, right? I’d rather you take one step, do nothing. Tell me tomorrow, you feel great. And then we take two steps, right? Because one thing we find with this condition, similarly to multiple sclerosis, similarly to post-polio syndrome, similarly to many autoimmune conditions, is that how we feel right now and how we feel during the workout is not necessarily going to be predictive of what the impact of the workout is going to do to us. So if you feel good for this 20 minute workout, and I promise you, I’m not doing 20 minute workouts with anybody with COVID yet. Okay. But if you feel good during this 20 minute workout, but then that creates an inflammatory response in your body, then that’s the opposite of what we probably need for longterm healing.
So it’s really, I always, I will tell you this, err, on the side of caution, err, on the side of doing less, you know, as opposed to doing more and heart, you know, chest pain, I think you want to see a cardiologist. I think you want to see a pulmonologist. I think you wanna see a gastroenterologist. Because sometimes the GI system can also seem like cardiac and certainly the musculoskeletal system can see my cardiac. But again, in the next several weeks we have all of the above that will be here and we will dissect this down to it’s minuscule. So hopefully we will learn. And also the more information you can give us, the more we can learn, this is a team approach.
So next question is a big question amongst long haulers. And it kind of hits on our frustration with the lack of belief that we’re getting from doctors. So the question is what differentiates anxiety from the long haul symptoms we are experiencing like heart palpitations, dizziness, fatigue, memory issues, and everything else. I’m tired of being told it’s anxiety. If I have anxiety, it’s from lack of help and answers.
Great question. I’ve heard that for decades and with COVID multiply it times a million. Okay. One of the frustrations for everybody, both patients and medical community is that, you know, we rely a lot on vital signs and diagnostic tests, right? So if a patient comes into the ER, probably going to get an EKG, probably going to get their blood drawn, maybe they’re going to get a chest X, right. Maybe they’re going to get a cat scan, maybe gonna get a few other things. Right. But in so many different patients, the vital signs and the diagnostic tests come back normal, right? So you say, okay, I got a chest X Ray. It looked clear. Okay. Why am I short of breath? Then I have a chest X Ray. It looked clear. Why am I coughing up mucus? Then I got a chest X Ray it look.
Or my oxygen saturation is 98%. Why am I still short of breath? Very frustrating. My EKG is normal. Why am I getting chest pain? My I’m getting chest pain, but my coronary arteries are clean. Why am I getting chest pain? Very frustrating. Okay. Now let’s talk about anxiety. Okay. There’s a cycle. There’s a cycle. Okay. Not being able to breathe is very anxiety provoking, right? If you can’t breathe well, that’s going to produce anxiety. Anxiety is going to increase your sympathetic outflow, which is the fight flight or freeze response, right? So that’s going to make your heart race. That’s going to make you breathe fast. That’s going to make you breathe shallow. And then guess what? The harder you work to breathe, the harder it becomes to breathe. And then guess what? The harder your heart works, especially in the context of dysautonomia, which is what we talked about before.
Now. Maybe you’re going to get dizzy. Now, maybe you’re going to get sweaty because all your blood is in your legs. Now can all these symptoms be signs or symptoms of anxiety alone? Yes, they can. There are people who have anxiety disorders who have raising hearts, who get dizzy, who get anxious, who you know, whose heart palpitate, but I can assure you, the answer has to be just because you can’t see it on a scan. It doesn’t mean you’re not having it. And if you have a, you know, if you, if you believe you have COVID and you know, that’s another kind of challenge here. We have tests. Some of the tests work, some of the tests don’t work. There’s false negatives. There’s false positives. Again, big problem. Right? I have a thermometer. Sometimes I take my temperature. My temperature is 97.6.
I’ll take it five minutes later. It’s 98.2. I’ll take it 10 minutes later. It’s an idea. I don’t trust it. Right? Like unless something is easily reproducible, then the value is, is limited. So the idea behind this is if your doctor is telling you, there’s nothing wrong with you, it’s just anxiety. I think you have to consider looking elsewhere and I know that’s extreme. Okay. I know that’s extreme, but we have, but you can’t determine that it’s anxiety without the workout, without the workup. I mean, so in other words, if you have symptoms that could be anxiety, but it could also be your heart and it could also be a pulmonary embolism and it could also be something like that. Then you need to work up the heart and you need to work up the loans and you need to work out other potential causes before making the assumption that it is anxiety.
Anxiety is a part of it. If you’re in this group and you’re not anxious, I would be worried about you. Right? Anxiety comes with the territory. And even if you’ve never had COVID and even if you don’t have any signs and symptoms, look, I live, I live four blocks from NYU medical center. My backyard faces the main thoroughfare for ambulance route. I hear an ambulance every five minutes. How could you not be anxious? Right? But you can’t be dismissed and you can assume it’s anxiety until you work up the other systems. So my advice to you is be a little pushy, you know, will, you know, ask your doctor, say, listen, can I see a cardiologist? Can you refer me to a cardiologist? Now, if doctor for me, I feel like if a doctor is resistant to referring you to other doctors, I always ask why.
Right? But to me, if you’re talking about chest pain or dizziness or other symptoms, and again, and you, if when you have something that’s kind of like this huge Whirlpool of symptoms, it’s like Progresso soup of symptoms. Okay. Progresso, if you use that, I’m your man. I’m going to send you my money, my royalty address. But the idea is like, it’s a mixed bag for everybody. So the idea is you have to work up the system before ruling out that it could be your heart or it could be your lungs or it could be dysautonomia or it could be anything else. My opinion.
If anybody has, you know, problems with that, like feel free to reach out because I’m happy to help you kind of get in the right direction through our foundation, the pulmonary wellness foundation, we have an amazing team of experienced people and we’ll help you. We’ll help you find the answers. We may not know the answers, but we’ll help you at least try to get pointed in the right direction.
The next question is what is with the new onset of sleep apnea for people post COVID? There’s a ton of people waking up in the middle of the night, gasping for air.
Great question. I saw that question earlier. I did what research is out there on it. And I read quite a bit. And when I say quite a bit, there’s not a lot out there. So I read everything that’s out there on sleep apnea and Cove it. So the majority of articles that are written about sleep apnea, and COVID talk about the risk of COVID for people who already have sleep apnea. Okay. Now waking up in the middle of the night, short of breath, doesn’t only point to sleep apnea. It could be many different things that could be anxiety. That could be other, I mean, there’s a lot of different reasons. It could be any arrhythmia. It could be, you know, there’s a lot of different reasons for that. So again, kind of a nonspecific symptom, but what I saw as potential for causing of sleep apnea.
Now, if you had sleep apnea before, okay, then it’s, it makes perfect sense that it could be exacerbated by COVID right. It makes sense because your whole body is going to be weakened. So if that’s the case, then that makes sense. If you never had sleep apnea before, then we have to and say, well, maybe it is a covert situation. And that the thing that was pointed to over and over again, was inflammation and or potential scarring. Okay. Fibrosis. But again, there was like this much written about it. So one thing we can do is we can certainly talk about a cane or about that next week. He’s a pulmonologist who’s specialist in in critical care medicine, pulmonology and, and particularly interstitial lung diseases. So diseases that cause scarring and autoimmune diseases. But I also will bring in a sleep specialist. But if you are waking up in the middle of the night, short of breath, what I would ask my doctor is this number one is a sleep study warranted, okay?
Because sleep apnea can also lead to other complications. So number one, would it be of benefit for me to have a sleep study now to have a sleep study is complex. You have to go into a sleep lab and you have to stay overnight. It’s a big deal. But there’s a similar test called an overnight oxygen study. Okay. So overnight oxygen study is you get a wrist strap or you get something. So you wear your accelerometer overnight. It records you while you sleep record your heart rate and blood heart rate and oxygen saturation. And the other thing that would be beneficial to do at the same time of that is a halter monitor. And what a halter monitor is, is a 24 hour or more 12 lead EKG. And the beauty of those two tests together is that number one, you record your symptoms.
So it doesn’t happen. Does it not happen? But by doing the halter monitor and by doing the overnight oxygen study, you get three pieces of information. You get heart rate, you get heart rhythm, 12 lead EKG, and you get oxygen saturation and you can see, well, did this drop in saturation or did this awakening correlate with an increase in heart rate? Did it correlate with any arrhythmia? Did it correlate with a drop in oxygen and a drop in oxygen can cause an arrhythmia and it Rhythmia can cause a drop in oxygen slowly, bap, anemia can cause an arrhythmia and, or a drop in oxygen. So you see again, I described this as this kind of convoluted web of symptoms that have to be taken apart piece by piece. And it’s like a car. If you want to evaluate a car, you could look at the car from the outside that doesn’t tell you about the engine.
It doesn’t tell you about the spark plugs. It doesn’t tell you about the carburetor and I’m spitballing here. Cause I don’t know anything about cars, but I know those are car parts. Okay. But the idea is you have to look at system by system, by system. And in my opinion, insist upon it insist upon it. And if you can’t get that help, then feel free to reach out. And we’re happy to try to help you get that help. But I’m sure more and more and more you’re to see these post COVID centers, centers popping up where these are going to become standard. And you’re not going to have to ask, but again, the reason you guys, or one of the many reasons you guys are stuck in the middle of a rock and a hard place is because we’re still in the middle of a raging pandemic and life and death will always come before your symptoms that many people view as annoyances or inconveniences. I know they’re not. And I know they’re more than that, but you know, as Karen and I and other colleagues of mine have, have talked about, you know, time after time. So many of you that went to the hospital and were turned away at any other given time in history, you would have been admitted right away and taken to the ICU. So I feel for you,
Next question is extremely important. And I think it’s a good bit of information for people to be cognitive up. So what is the difference between a stroke and a Tia? What are the signs? Why does this happen? Is it preventable? Also, there are many reports of people, months out from infection, dealing with strokes. What are the things that we should be doing and looking for?
All right, I’m giving that one to you. Karen, take it. You’re a paramedic. I’m gonna make you do some work tonight. Talk about GIF. Talk about difference between stroke and Tia, Tia and stroke.
So a stroke can be two things. You can have an occlusion or you can have a bleed. So when you have an occlusion, it’s blocking the oxygen from getting to parts of your brain, which may lead to the deficits that you see in many people, which could be paralysis of their limbs. It could be the droopy face, the inability to talk. A Tia is kind of the same thing, but it’s a clot in, it breaks up and it moves. It’s not there for as long of a time. Things that you should be looking out for again it’s sometimes hard to see this in yourself. It’s normally something you notice in somebody else, but again, like when you’re trying to talk, sometimes you might think like you’re saying the right words, but you’re not a person next to you may notice that your speech is slurred.
They may notice that you’re gazing off in one direction. That you’re not really present. You may notice weakness on one side of your body. You may notice that when you go to walk, you’re not able to take that step. So these are all things that you should be looking out or sometimes in people too not as common, but I’ve heard that people start to lose vision on, in their eye when this is ongoing. And for a Tia, this person might seem out of it for a couple of minutes. Maybe even a couple of hours, but they start to back around normally with a stroke, you can come back around. It takes a lot longer, but with the stroke, it could be more permanent or permanent. So I’m somebody with a Tia. If you notice that they’re out of it, their speech is slurred.
They’re weak, they’re disoriented. They don’t know who they are, where they are. You know, one of the things that we tell people is, can you repeat this phrase? You can’t teach an old dog new tricks. Can you smile for me if they can’t smile? That’s a sign you can do. What we call a Cincinnati stroke scale? Can they hold their arms up? Can they lift their palms to the ceiling? Does one arm drift? Are they able to hold both up? So there’s a couple of things that you can ask somebody. Like I said, it’s harder to notice in yourself because if you’re going through something where you’re not fully cognitive and aware, you’re most likely not going to be aware that something is happening to you. So if you live with a loved one or you’re visiting a friend or somebody that’s had COVID even at Kobe, this is important for everybody. These are some signs that you should look for. And obviously this is one of those things where nine 11 is imperative. Time is of the essence. If somebody is having a stroke, you want to get them to the emergency room as soon as possible, because there are certain things that could be done whether they need a cath lab, whether they can start thrombolytics time’s of the essence. So this person’s outcome really depends on the speed of care.
Yup. Another way to think of it as Trent, Tia is transient ischemic attack. So it comes and goes, but it’s a warning sign. Stroke is you’ve had the brain damage. And so like a Tia to the brain is what angina is to the heart. So it’s not getting enough blood, but then you reduce it. And then, you know, like a stroke is like a heart attack where you actually have, you know, cell death. But as Karen said, time is of the essence. We have what we call the golden hour where, you know, if you get to the hospital fast, it could be almost completely reversed in many cases. And again, that’s something we’re going to chop up, you know, very, very much with our neurologist in, in a few weeks, actually a week. So
A lot of people are having thyroid issues. How does this correlate? And then they mentioned hormones, menstrual changes, everything is so bizarre.
I don’t think there’s an answer. You know, I don’t have an answer, certainly. One of the doctors that’s, that’s coming will be ream Shariah, and she will, we’ll talk a lot about you know, all of our doctors can talk about this, but again, I think so many systems are affected. I think it can affect, you know, your menstrual you know, cycle, but I also think that it can be affected by your menstrual cycle. You know, I think a lot of it’s hormone based and inflammation based, you know, one other way that I think about inflammation is we can talk about inflammation in, let’s say your gut, let’s say like colitis or Crohn’s disease or something like that. Or we could talk about inflammation like pericarditis or something like that. But there’s also kind of like a whole body net total or sum total of inflammation.
And if you have inflammation in a lot of different areas, well, that’s going to increase your sum total of inflammation. So I’m not an expert on the thyroid by a long shot, but we’re going to have an endocrinologist as well. I’m going to look for the best endocrinologist on COVID to talk about these things in the next couple of weeks, but you know, again, you’re right, it says it’s a mixed bag. Anything can happen. You know, if you have a forest fire, anything can happen. And as things start to grow back, we need to first reduce the inflammation. And then the system starts to grow back, but not everything grows back or heals at the same, you know, at the same speed. So again, I think this is a lot of unknowns here. There was a better answer than that, but the next one
As a question, but I’m not going to read it as one, I’m going to reiterate it. Yes, you should be buying examiners and blood pressure, ms. Jeans and things to check your pulse, especially for postcode, but especially if you’re still dealing with symptoms and issues. Yes, the ERs are really full right now. If you need an ER, obviously you need to go, but just to go to get your blood pressure checked and all of that every time is not going to be helpful to all involved you, the best thing you can do. And I just put it in the comments is create a daily symptom chart. And on this chart, you can include your vitals things. Like what was your oxygen? What was your poles? What was your blood pressure throughout the day? What symptoms were you experiencing? Did you do anything new, different activity level that may be built on more symptoms for you?
Or was there anything that helped? Or a lot of us that are going to our doctors and having a hard time, getting them to listen to us and believe us, if you’re anything like me, when you’re put on the spot and that situation, you kind of blank out and you forget. So when you go in there with information and your chart loaded and say, here, this is everything I’ve been experiencing, I’ve been really detailed about it. This is a huge thing and it’s going to help you. It’s gonna help you be an advocate for yourself. And if you hand this to a doctor and they still don’t believe you I think you should be getting a second opinion if you have the capability to do so. So yes, these are things that you could help monitor yourself at home and know where you’re at. So if you have the ability to get those things
Just add to that for a moment. Other things that are very helpful. And let me just say, like, this is not a plug because we’re doing it for free, but my team is doing consoles. Okay. Like if you want to set up personal consultations, my team and I are happy to talk this out with you, but let me tell you like how to use a blood pressure cuff and a saturation meter. That would be so helpful in getting information for you, especially as it relates to dysautonomia, right. And symptoms. That don’t make sense. So what I would do when I have a patient who’s got dysautonomia pots or something like that, or pulmonary hypertension where they can’t stay up, I told you about lying down before, right? So in the lying down, and it’s helpful, if you could have somebody else with you to kind of help record things so that you’re not trying to do all this stuff at once, but you’re lying down.
We get a baseline heart rate, we get a baseline blood pressure. We get a baseline oxygen saturation. Okay. When you change positions going from lying down to sitting up, there’s a gravity change, right? Because here this is gravity neutral, meaning that it’s sideways, right? So gravity goes like this. This is neutral. When you go from lying down to sitting up, blood goes down to the legs because gravity will bring it down. That could drop your blood pressure. Okay? Under normal circumstances in real world, the blood vessels are designed to squeeze on their own to help bring that blood back up, okay. In dysautonomia that may or may not happen. But if we see that your blood pressure drops, when you go from lying down to sitting up, well, that gives us a great deal of information. Now, when your blood pressure drops, we may also see your heart rate go up, right?
Because your heart is trying to say, Hey, blood pressures. They are the way our body reads blood pressure is the carotid arteries and the aortic arch. And they, those barrel receptors, those pressure receptors say, Hey Houston, we got a problem here. We just dropped our blood pressure. 40 points. So the heart, so the brain says sympathetic nervous system, go into action, heart pump, fast, everything else, squeeze. We have to bring the blood back to the heart and the brain. So write that down, write down your heart, rate your blood pressure, your oxygen saturation. Now your heart rate going up because some people have a hard time. Like you may be so exhausted. They’re going from lying down to sitting up, maybe work for you. Right. As crazy as that sounds, that may be tough. So that may raise your heart rate just to do the work.
And then you’ve got the gravity assist of pulling blood down. So think of your heart rate, you know, going up without the blood, coming back as flushing a toilet over and over again, without giving it a chance to fail right then. Okay. Next. And let me just say this, ideally, you’re going to do this with a health professional. Okay. I’m not saying go out in the wood chat. Let’s put the thing here. Let’s see what happens. So if you know, this can cause your symptoms. Okay. So it’s gotta be done super carefully. Okay. And ideally under medical supervision and ideally with an EKG on ideally with someone checking a blood pressure, but then when you go from sitting to standing again, okay. Now when I’m sitting, at least my, my thighs and my, and my hips are holding some of the blood up. Now, everything is straight up and down and now gravity is pulling everything down.
So that can be another drop in blood pressure. And another increase in heart rate, you see how that’s all connected and you seize that. Why it’s so hard to figure out. So if we were going to train somebody with pots or with pulmonary hypertension or any other cardiomyopathy or any other condition that dysautonomia or autonomic dysfunction is a feature of it, what we would do is we would start taking baby steps. Again, I believe, I believe I have no proof that compression stockings are going to be helpful and check with your doctor before you get them, just to make sure that they’re not harmful. And I can’t think of a reason why they would, but please ask your doctor. Say I spoke to, you know, I heard someone say, these might be helpful to me, but that’s very beneficial information. And what we would do is we would have you do the compression stocks, the compression stockings, what they do is they act as a physical press so that if your blood vessels are not communicating properly with the rest of your autonomic nervous system, at least you’re not dropping your pressure.
And the pendulum will not swing as far. So if you drop your blood pressure 50 points, and all of a sudden you get dizzy and you get sweaty because it’s like your shocky, your body believes it, you know, perceives it as like, you know, blood loss and being shocky. Well, that might make you dizzy. That might make you feel like you’re going to pass out. That’s not the time to push you. That’s not the time for you to say, Hey, I want to do exercise. That’s the time to say, Hey, let’s start little by little working you back. So I hope that makes sense, but you see, there’s no stress, there’s no straightforward answers. I like to talk a lot anyway, but in this case, there’s no straightforward answers. Okay. And with the cardiovascular system and the autonomic nervous system, there’s so much overlapping intermixing. If it’s hard enough, if it’s just a cardiac patient, it’s hard enough. If it’s just a pulmonary patient, it’s hard enough if it’s just somebody with dysautonomia, but with this and everything else, we must inch along and make sure that we do no harm before pushing. Okay. Always err, on the side of caution,
Next question is extremely important. Are there any resources for mental health you recommend not only for us, but for those of us, with families struggling because of us, especially children, who we are not totally present for right now and seeing us suffer
Super important question. You know, this is a super stressful time for everybody, you know, and as I spoke about in one of our first meetings, you know, when it’s, if it’s bad enough, if you are going through this on your own, and you were the only person who was sick or injured and you had the support of your family and you have the support of, of the medical community, which you do times a thousand, don’t take the wrong implication of that. But you had the support of the government and you have the support of your community. That’s tough enough. But similarly to nine 11, like when we have in a situation where you’re personally impacted, your whole family is impacted, your city is impacted. Your state has impacted your country. Tree is impacted. The world is impacted. It is super stressful. And you know, we want to help you.
Everybody wants to help you. I want to help as many people as I can, but you know what? I have some days where I know I better work out myself and I better do something for myself or I’m going to fail. Okay. So if you’re going through it, you have to address these things. So who do you talk to about that? Okay. As much social support, as you can talk to your friends, talk to your family, zoom, Skype FaceTime, very important. Talk to your doctors. Okay. Talk to me. Health professionals. So psychiatry and psychology, social work you know, there are support groups popping up all over. But the other thing about this is that you know, there’s also groups for children, family sports in the same way that alcoholics not has. Alanon, Alateen make sure that your family is being taken care of.
It’s a great question because it recognizes the fact that it’s not just you. Okay. It’s the whole unit, it’s the family, it’s everybody else. And I will give you one resource that I have found to be invaluable over the years for so many different things. And I will post the link to the webinar that I’ve done with him. I’ve done two webinars with him and I’m going to try to get them to come back and speak specifically typically about COVID his name is Don Richard Brown and his wife’s name is dr. Patricia Gerberg and they, they are psychiatrists and he’s also a specialist in pulmonary and psychiatry. And he’s got a book called the healing power of the breath. And with the book, you can download the book, you could buy the book, but it also comes with video to talk about the breathing. I don’t know if we can push people physically right now.
My gut is some people, maybe some people, probably not. Some people definitely not, but I’m going to err on the side of caution and say, probably not, but everybody should be doing breathing. Okay. And dr. Richard Brown approaches from a physiologic perspective of respiratory from a medical perspective and also from a stress management perspective and an anxiety and depression perspective. And the other thing about that is that many of the breathing exercises that we do help to quiet the sympathetic nervous system and help to increase parasympathetic activity. Sympathetic is re is fight flight or freeze and parasympathetic is rest and digest and heal. So I believe that this book and this program would be fantastic in terms of helping to manage your anxiety and depression, as well as to quiet the sympathetic nervous system as well as to assist with healing. So he, in my, let me tell you about Richard Brown.
Okay. Just let me tell you one moment, just so that you know, I’m not going to give you his full history, nine 11 earthquake in Haiti genocide in Rwanda maybe not Rwanda, let me not, let me not quote, definitely Rwanda. This guy goes where the worst of the worst occurs and what he does is he trains the trainers, new Orleans, hurricane Katrina. And he is, he looks like a mild mannered, Clark Kent tight. But trust me, when I say he is a super bad ass and he knows his stuff, healing power of the breath, and we did two webinars. We will post them for you to watch and feel free to email me if you Beth, if you could just post those links, I’m sure you already did it already, but that’s my greatest recommendation. And then also to look for local health and ask your doctor, you know, who they would recommend for this. We need, you know, in a lot of ways we need crisis counselors for this. This is serious. You know, this is like a super emergency. You’re not alone in this, but you have anxiety. The anxiety makes you feel worse. You feel worse. That makes you more anxious.
It’s all connected.
And let me just say one more thing. I’ve been reading a lot lately and hearing a lot lately about you know, when they put mindfulness and meditation in place of detention, the impact it has on children, especially like underprivileged children. So here’s an idea. Do this with your children, do this with your family. This is something that you could say, Hey, you know what? Here’s a, here’s a way that you can help. Mommy, why don’t we sit together on the couch and why don’t we breathe together? And it’s, it’s time that you can be close to each other and it’s time that you can spend together. And it’s time that you can work towards the same common goal. And it’s time that you can have a physiologic impact. And trust me guys, if you’re anxious, your kids are anxious. Kids are resilient, but they’re super sensitive. And they pick up on things.
My son has enjoyed the cupping and beating on my size that you showed me. But it definitely helps, but it’s a way that I’ve gotten him involved in my recovery and can kind of do some of the stuff with him.
Absolutely. I mean, a lot of people, you know, grew up in families where like mommy’s sick. She locks herself in her room and we don’t see her for two weeks. Right. And this is scary for kids and it’s even scarier when they can’t see you or they can’t, you know, they don’t get explanations. And so, you know, these are ways that, you know, you could really have a, have a, I feel have a great impact on people and you know, kids are in a tough spot right now, but they’re not in, you know, when people talk about what kids don’t have, there’s a lot that they do have, but what they, you know, they have every channel on TV. They have video games, they have this, they have that for me. If I were a kid and they were like, you don’t have to go to school for two years.
I’d be like, awesome. I don’t go to school anyway. But the idea is that, you know, anything, you can involve them in any sense of control that you can give them any choice that you can give them because we all feel powerless right now. Right? We all feel like things are spinning out of control because they are right. But I have a great sheet that we talk about in our Tuesday, Thursday group. It says 50 things that you can control. So there’s a lot of things that are not in our control, focus on the things that are within our control and also the more choices and the more decisions you involve your children in the more control they feel and the less anxious they will be. And I say that from my 20 years of raising other people’s kids, no, I’m just kidding. I’m doing it works with my dogs.
Next question is, I’ve seen people mentioned that a hot steam shower helped break up some of their mucus and congestion, but is that okay for those of us still suffering from fevers?
Okay. Another great question. So show of hands, how many people have an issue with secretions? Mucus. Okay. Some, okay. So hot, hot or warm shower and steam can definitely help with that. When we, and again, I’m going to reference another another webinar, one that was done. And I think she’s here to Marian. Machlis who’s the chief of our airway clearance unit. It’s called Zen and the art of secretion clearance. And we will get those links to you too. But here’s the thing. A lot of people with COVID have shortness of breath. A lot of people with COVID have a cough. Some people have a dry cough, some people have a wet cough. So the way that we would ask about your cough is we would say, are you coughing? If the answer is no, okay, this is differential diagnosis.
So it’s like a decision tree. If you’re coughing, are you bringing up any mucus? If the answer is yes. Okay. We know you have what we call a productive cough. If you’re bringing up mucus, we want to know, is it thick or thin? If it’s thick, we want to do things to help thin it out. Okay. we want to do things to help you clear it. Okay. Is it clear white or colored because different colors will tell us about infection and things like that. So there’s, if, if we know you have a problem with secretions, then there are definitely a secretion clearance programs that we utilize. And one of the things that I have found to be extremely helpful is this device called the aerobic guy. Okay. and a lot of people I know are getting incentive spirometers from the hospital, which is the thing that has either the balls in it, or kind of like a, a plunger. And you’re asked to breathe in, and that raises the balls or the plunger. The difference between that, and this is, this is what’s in a class of devices and there are other ones are Robeco acapella. There are other ones as well, but these are called positive expository pressure devices. And with these, you can breathe in, and then
During both inhalation and exhalation, you get a vibration that helps you to milk secretions up. Now, there are people who demonstrates symptoms. Like you’ll say, it feels like I can’t take a deep breath, or it feels like I have a tightness in my chest, or it feels like I’m congested. And those are things that we would normally say, well, okay. Why is that? If you can’t take a deep breath, maybe we want to work on increasing your aeration. If you feel like, you know, you’re congested, what we want to work on helping to clear secretions. But sometimes people are having these sensations and they don’t have secretions, or they do have secretions, but they don’t feel it. So the answer is, you know, and I know that’s a big answer to, should I take a hot shower? You can take a hot shower with a fever.
Okay. There’s no reason you can’t take a hot shower, but for many people, heat and hot shower is actually very stimulating and not in a good way. So it can be almost like inflammatory. So my feeling is that if it doesn’t bother you and it helps you to clear secretions, you can do it. But some people may find that there are other symptoms may get worse after a hot shower. So they may have more joint pain. They may have more skin discomfort. They may have more a rash or things like that. So that’s an individual thing. But for secretion clearance, you Arabica other breathing techniques, the postural drainage positions that we use for chest physical therapy and we’ll post I’ll send you guys an email with kind of all the references from what we put tonight so that you have it all in one spot, and this will also be made available to you.
You know, we’ll make the recording available to you on our website, but the thing is that again, whereas if there was no COVID and there was no dysautonomia and there was no nothing else we would say, well, yeah, hot shower might, might be great. Okay. But we don’t know what it’s going to do to the other systems. So everything has to be taken on an individual basis and with a grain of salt. And one thing I know Mark talks about all the time that he loves his NAC. I don’t know if Mark, if you know anything about NAC and COVID,
Again, there’s not anything specific that I could offer. Cause there’s probably, there’s no data on it, no data, you know, because it’s an anti inflammatory. And it doesn’t interact with medications or things like that. I can’t see that there would be an issue with it being contraindicated, whether or not it would help. I would think it would be, you know, it’s certainly gonna help with mucous clearance, but whether or not it’s going to have anything specific for COVID, everything seems to be tied to ACE receptor activity and the inflammatory and the inflammatory. So you know, it, it does not have any effect on H two and receptors.
Yeah. And the other thing is like, again, I say, you know, something that you might normally use you know Laurie that looks like my old cat I, you know, I love that animals come to these meetings. They’re welcome every time, just so you know. But you know, the thing is, again, with any type of supplement medication over the counter or anything like that, it’s not just a question of, is it going to work on the mucus because the answer is what is the mucus coming from? So I think, again, we don’t want to necessarily treat something that could be harmful to something else before the diagnostics are done. And that’s where, you know, heart and lungs and GI and neuro, you know, we need information. Otherwise it’s just like taking a shot in the dark and that shot in the dark could actually be harmful to you.
Sorry. I know those are not the answers you want. I know you want the magic pill or device, but it’s not there yet, but we’re, we’re trying to kind of help you guys inch a long and really you know, one step forward and another step forward is better than two steps forward and three steps back. So, you know,
Well, with regard to NAC, I would offer this and, and it would apply to most, anything else. You’re doing whatever you have been doing all along, whether or not you have COVID or get COVID unless your doctors tell you, Oh, this is possibly bad, or this is bad. Do not stop what you’ve been doing, but don’t necessarily start doing something like NAC, just because you think it might help if you’re not doing it already.
Yep. And another suggestion I would make is, you know, before you ask your doctor about a specific thing, show them a list of everything you’re taking so far and all your conditions, right? Because these things don’t exist in a vacuum, right? So if you had no medical condition in the past, but now you have a cough, well, you could treat the cough, but make sure that any question is in the context of your other medical conditions, your COVID course, as well as what prescription medications, what over the counter medications and what supplements you’re taking, because only with that full view can good decisions be made and, you know, contrary to like, if you were, if you just had respiratory disease or cardiac disease, I say, this is like one cardiac lens laid over a respiratory lens, laid over a GI lens. And these things all impact each other. So please exercise caution and go slowly as we move forward.
The next question is kind of relapsed as being more dangerous than the initial onset your body is calming. And then bam, it’s an overdrive again. And again,
I have no basis to answer that question. I did read something scary today. I don’t say it’s the gospel. And I believe me, my goal is never to, to, to crush your hope. It shouldn’t and I’m not going to, but I did read that there is a possibility of reinfection. And I did read that there’s the possibility that a second or third event could be worse than the first, but that’s kinda like anything. I would take that with a grain of salt. I don’t think there’s enough data there. But again, you know, there are conditions that are based in the autoimmune system. There are conditions that are based in like the inflammatory response where there’s ups and downs. And I’ve spoken to tons of people where one person’s course looks like this one person’s course looks like this one person of course looks like this and this, I have no basis for answering that question.
I am also getting feeds from quite a few journals. And that question keeps coming up. Is there a chance for a re-infection second infection? And while nobody say definitively yes or definitively, no. The broad opinion is that it’s doubtful. There are too many specifics that, that theoretically point to it not being the case, but like say we really don’t know there is no good data on it. And now we’re having to look at case by case studies and then tracing them to find out whether or not it’s re-infection second infection. Just a reoccurrence of effects infection, because they several instances where I have seen publications talk about it, have been people who have not been considered completely over it before they have another flare up. And just like we’re talking about here with the fact that we’ve got these long haul symptoms that they, they rise, they fall, they they’re worse for some people.
And then for others that clouds the picture as to whether or not a person is reinfecting or if they’re just on that roller coaster of longterm symptoms. Yeah. And it’s tricky also because of the testing inconsistencies. I mean, that makes it very challenging. Right? So it’s like, if you’re positive, like I’ve heard of people who have a negative test, they have all the symptoms, negative tests, then they test positive, then they test negative, then they test positive again. So is it likely that that person got COVID again? Probably not, but again, I think a lot of these things are remain to be seen
Saki disease. Why are these only being talked about in children when it seems we, as adults are also dealing with this? I think that they’re speaking mostly about Kawasaki and in children, because that’s one of the more serious symptoms that they’re getting. I don’t think that I, I think, you know, and again, I really, I have to say and I, you know, I’m not a BS artist. Okay. But I really, I give you a lot of credit Karen, for kind of bringing this to the forefront. The word is getting out about long haulers and the word is getting out about people who are, you know, and I give credit to survivor Corps for that also. But little by little, the word is getting out. And you say, when that’s all they’re talking about, it depends who you talk to. I hear so little about children and COVID, I hear very little about it. You know, I hear about it when it’s a heart issue because that’s very serious. But I think we know that we know we see you. We know that there’s plenty of people out there with multi-system inflammation. And again, you know, when the curves flatten the acute life
Or death, urgency is no longer, so imminent, then there will be more care for people like you. Unfortunately, you know, that’s a long time to wait and that doesn’t help you at the second, but it’s another reason for doing everything we can to flatten the curve. So it’s a tough spot. I really do feel for you because you know what, it’s, it’s a tough spot to be. And when you feel like you’re crying out for help and either no one’s listening to you or, you know, or no one hears you or they think that you’re making it up, or they think that it’s all in your head. I mean, that is, it’s like, you feel like you’re being gaslighted. You know, I, in part of why, you know, my team wants to want to work with you guys is because we see it.
We’re used to people with respiratory disease going through that. We’re used to people with other conditions going through that. And we want you to know that we see you, we hear you, we’re working with you. We want to help you. Your time will come, but that’s not comfort at this moment, but we, we have to push for that time to be now, you know? And, and, and that’s why we encourage you to, to, to advocate for yourself, to ask groups, to advocate for you to, to, to, to make that funding available. But similar to nine 11, you know, as, as one of my friends, dr. Depaulo says, he’s like we had this one incident, and then we had 20 years of, of, of kind of dealing with it afterwards. It’s going to be very similar with COVID. And I don’t say that to say, you’re going to be dealing with it for 20 years. But there’s going to be, you know, there’s going to be a long, a long haul for lack of a better word
To piggyback kind of off of that. The next question is do long haulers still have the potential to have a cytokine storm and die. Have you heard of any long haulers dying months later?
I have not personally. It doesn’t mean it’s not out there. Have you con
The only thing I’ve heard is about clouding months after still people dealing with that. So
I will tell you about one study that I, that I read recently, and it was talking about people being put on ventilators and this what they were saying, and I I’m going to paraphrase cause I, I read it like two weeks ago, but the idea was that they found that most people who were admitted to the hospital were put on a ventilator within the first four days of being admitted if they needed it. And then what they found is that there was a secondary spike for some reason, and they don’t know why, but the one possibility was cytokine storm on day 14. Okay. So the takeaway from that is okay, if you come in and we know now, you know, very well that not everybody needs to be on a ventilator and in some cases, ventilators were not the treatment of choice, but here in New York city, this was trial by fire.
Okay, no question about it. But the, the takeaway from that is for people that were really sick, that if they didn’t go on a ventilator, they were definitely going to die. It usually happened in the first 14 days. I mean the first four days, but then the next four days from four to 14 was crucial because what they found was that some people super de-compensated. And what that means is that they went into multi-system failure very quickly, which was potentially associated with a cytokine storm. But then after 14 days, they were usually off in the woods. Now, I don’t know, out of the woods, not often in the woods they were in the woods from four to 14. But but, but I don’t know if we, you know, we certainly can’t extrapolate from that, that after day 14 you’re, you’re not going to have a cytokine storm, definitely more information needs to be found out. So again, the answer is, I don’t know, this is like a, just like a press conference where my answer is continuously. No comment.
Next question, which again is becoming a lot more common and seems to only be happening to people about two months in is hair loss. Why are people losing their hair? Do you think that’s COVID related or do you think that’s more stress induced?
I would say, I don’t know, but I would say it probably could be either or, or both, you know, I think that there’s probably components of COVID that contribute to hair loss. I think if you were prone to hair loss before then COVID probably exacerbates it. And I think maybe, you know, I know people who lose their hair due to stress alone. So I’d say probably any, any one, it could be a, B, C a, and B BNC, all of the above or none of the above.
And then this week can be our last pre-submitted question of the night. I think it’s a good one to end on. Because I’m still having all of these issues from COBIT. Am I immune compromised? What happens if I’m exposed to a cold or the flu it’s scary to even think about.
Yeah, absolutely. You know, I, I’m sorry. I like my hair, just that up on my arms. Like when I heard that question, because I really get it. Yeah. I believe if you’ve had COVID you’re immunocompromised and I believe that, you know, if you were to get a cold, if you were to get a flu, it could potentially be worse. Okay. one thing that I’ve said to my community which is the cardiopulmonary community and the L you know, basically my average age patient is 80 years old, but thing I’ve said to them
Is that if this is the first time in history, when people in my community actually had an advantage over everybody else, and the advantages that we’ve been preparing for years in terms of preventing diseases, right? So for decades, I’ve been teaching people about how to prevent the common, cold, how to prevent the flu, how to prevent pneumonia. And it’s all the same things that we tell people about. COVID, it’s frequent hand washing, it’s avoiding crowds, it’s avoiding sick people. It’s wearing a mask. If you think you might be exposed. So those things all stand. And, you know, I said, literally I stopped. I closed my practice on March 10th. Okay. Because I saw the writing on the wall with this, and my patients are the oldest sickest patients in the book, heart disease, lung disease. And I said to myself, I am not willing to take a chance on one of my patients taking the bus or getting in a taxi or Uber or, you know, and coming to the pulmonary center and getting sick.
So we closed our early, okay. And from day one, I’ve had the same position, which is that masks help. They help the wearer. They help the other people frequent hand washing helps. And you know what, in this situation, my feeling is stay in doors. I tell my cardiopulmonary patients, if you don’t want, COVID stay indoors. I tell my COVID patients, if you don’t want the flu or pneumonia or something else, stay in doors, you know, this is serious, right? So for the people who think this is a hoax, like I want to shout expletives. And I don’t know you people that well, right? You’re my new group. Okay. If this were my old group, I would be shouting expletives right now. Cause they expect it from me. But the idea is if we were in a war and there were shooting outside, right. There’s not a guarantee you’re going to get shot.
But if there were even the possibility that you were going to get shot, would you be like, well, you know, screw it. My hair is getting kind of line. I’m going to go get a haircut. Do you think you’d be like, you know what? I would like those muscles, they may get [inaudible] tonight. Like it, it defies logic. It defies logic, right? We know coven has potential, surely life and death. It’s not probably life and death. And if you have COVID my not my, you know, again, I don’t need a whole lot of proof to tell me this, but I’m sure your immune system is not ready and doesn’t want the flu and doesn’t want a cold and doesn’t want to hang nail or a foot fungus or anything else. Okay. You guys are dealing with enough. Please stay indoors, please. Socially distance. Please don’t come in contact with potential exposures.
And I talk about the difference between potential exposures and probable exposures. If your husband or wife goes out to work every day, they are a potential exposure. Okay. If they’re working with 26 other people, well it’s like any person, you know, and not to, you know, make it weird or anything. But I think I tell you to think of it like a sexually transmitted disease. Okay. Any person that you’ve come in contact with has the potential to give you something that any, any person that they’ve come in contact with has. So I hear your fear. Okay. But to get pneumonia, you have to come in contact with pneumonia, to get the flu. You have to come in contact with the flu to get a foot fungus. You have to use the locker room at the, at the high school or something. But, but you get the idea.
Okay? Trust me when I say you don’t need anything else. Okay. I hear your fear. Stay in as much as you can. If you do have to go out, limit your exposures to other people, the way that you get something. So a basic formula, it’s like, it’s like working out frequency, intensity, and time and type, right? So it’s like, how frequently are you exposed to something? So the more you go out, the greater, the frequency, how intensely are you exposed to something? So like, this has to do with viral load and the number of people around you. So if you’re in the middle of a circle of 20 people and they all have COVID, well, that’s a greater chance that you’re going to get it. Then if you’re in a circle and only one of them has COVID and then time, how long are you exposed to it?
So to me, I’m not generally considered a wimp by most people. I know I’m inside, I’m staying inside. I don’t want it. Okay. And if you know, damn well, if you’ve had it, you don’t want it either. And you don’t want to give it to anyone else. And for the people that think it’s a hoax or think it’s, you know, it’s not serious, let them do their thing. Okay. Let them do their thing. But I don’t count on the government or other people to tell me what’s okay for me. Right. I use my own judgment today. You know, I was talking a lot about Disneyworld opening today on Facebook, right? Because this to me, defies logic and somebody said to me, well, you know what? I follow a lot of Disney employees on Instagram, including my daughter’s best friend. And they’re saying it’s okay.
And I was like, well, if your daughter’s best friend says, it’s okay, then it must be good. I’m like, did anyone even consult with doc? I mean, at least ask doc what he thinks, you know, not goofy. I’m not trusting goofy. I’m not trusting, you know, who’s the other guy. I don’t trust Disney. I don’t trust Dumbo. I don’t trust Dumbo. I love Dumbo, but I don’t trust them to tell me if Disneyland is safe. And people talk about the masks. Right. And I say, have you ever been to Disneyworld? Right? The idea is, are you touching things, right? I say hand to hand contact. Right? So you touch something and then you touch your face. How, you know, like, think about how many people have been to the doctor in the last month. Okay. So I hope what you’re finding is that when you go there, there’s not a lot of people in the waiting room.
Sometimes you’re the only one there everybody is wearing a gown or PPE. Everybody’s wearing a mask and, or a face mask. Right. And think about the medical community. That’s trained to manage infections, seeing people one at a time in order to make sure you don’t get sick. And what vision comes to your mind, it’s like everything’s white, white mask, blue mask, white hat, right. It sounds like purity. Now think of Disney world. How are they going to keep you safe? How are going to keep you safe? So trust, reliable sources, trust, reliable sources. That’s our last question for that.
Yeah. I just wanted to add to what you were saying. So yes I have had COVID. I am obviously very, very careful when I have to go out. I’m a single mom. So I’m the only person in my household who can do that. I have several elderly people in my community who have been very, very
Losing your Karen.
Lost you. I lost you. Did I try to limit to once a week
On their list too and grabbing things for them. So if you guys have anybody around you who can do the same. Okay.
Karen, I’m sorry. We lost. You said, can you hear me okay?
Yeah. Can you hear me now?
Yes. We lost everything you said. So please again.
All right. So for me, I have several elderly neighbors that I kind of look after. Right. I try to limit my grocery shopping to once a week when I go, I typically grab the things that they need for them as well. So my suggestion to many of you is if you have anybody around you who can help you, who can pick up the groceries for you to limit your exposure to the outside world. I’m sure that people are willing to step up and help you in this time. If you are somebody that has not have COVID and you’re just here to learn and you have immune compromised people that are around you, I would suggest that you offer your hand to help them in these times. There are things that programs that deliver your groceries. Instead of you going into the stores, look into things like this that just will help limit your exposure to the outside world at this time. If anybody’s around to help you ask them, don’t be
Afraid to ask for help in this time, because the last thing you want to do is not ask for help and find yourself in a bind. So sometimes we have to put pride aside and ask for that help if you need it. And I’m sure that somebody is going to be willing to step up for you
Guys. We have on our website a ton of COVID like suggestions. I just put the link in that, in the chat, like ways of, you know, prevention infection. I’ve been broadcasting on this almost every day since it started, but we have written stuff there that are, you know, how to keep yourself safe. We’re at eight 30, but I see that Marian Machlis who is the chief of our airway clearance unit has her hand up. I want to give her a chance to comment on some of these things. And then I am more than happy to stay on for another 30 minutes to talk and hear your thoughts and feedback and experiences. And I’m sure you guys have suggestions for other people, but just to kind of give you a voice and I will keep it down and you guys can, you know, just, just discuss, but go ahead, Marin.
Hi guys. I just, actually, this is from a long ago, I was not able to unmute during conversation, so I just want to let you know I’m, you know, I’m very, I here, let me get my, get my video up. So you don’t see my,
Yeah. Wondering what happened to your eyes.
She’s called, she’s called strange lady, that character. So now, you know, my personality anyway, but what I would say is I, I, I have trouble with people taking showers, especially from what I’ve been hearing from long haulers. Because I do think a lot of times it does trigger severe fatigue just from not even a hot shower, but just getting in the shower. And I know two people who, after they take showers, they actually basically have to stay in bed from that for a day or two, just from the energy. I mean, they’re all different, of course, iterations and things that happened with coven. We’re all different. But, you know, I just think showering in general, when you’re looking at a certain thing that we measure an energy unit, we measure things from showering T is a lot of these energy units, these metabolic humans for anyone.
So I find that it could take a lot of energy out of you. And in terms of a hot shower that can with many people, cause lightheadedness who are healthy. So what I suggest is there is something that called my pure mist, which is a facial Mister that some doctors actually do use to help thin some of the secretions that are up on top a little bit, that you can just put your face in, breathe in mist, and then you can breathe in and out of, I think VIX also makes one, so that’s one thing you can do or, or you can just boil some water and, and steam your face. The thing about that is I don’t like to recommend that because if the water is too hot, you can actually irritate your airways by breathing that in. I find that some of the machines at least give them a decent amount of heat or warmth where it won’t be injurious to you.
And I just, for someone else, I might say, sure, boil some water. But I think at this time there’s just such a delicate scale balance. You know, of just, it’s just such a little thing a feather could per some could just tip that scale as opposed to, you know, a 10 pound weight for others. So I like to err on that side of caution and just say, you know, try a, my pure mist, if you can, they sell them at CVS or Duane Reed you know, on, of course, if you don’t want to go out, you can order it online. There are ways to get it. That’s one suggestion I have, instead of thinking about a shower to help you, if you need,
It’s a great suggestion. You know, other, other things that pop to mind just from a physiologic perspective, showering is very difficult for anyone who has trouble breathing because this overhead activity or upper body activity puts the respiratory muscles that are particularly bad, mechanical advantage. And another thing, you know, that I, I thought of yesterday and I forgot to write it down, but, you know, with dysautonomia, it’s very possible that temperature regulation and also even perception of temperature is off. So I would, you know, again, you, you may be in a, a shower that you think is not that hot, but your body may perceive it as hotter than it is or colder than it is. So I would avoid extremes.
No, I mean, there was only other one other comment that somebody said aspect Kawasaki. And I had looked into it earlier, early on in when this first started. Just because a friend of mine had a very young child and and was nervous about it. And I started reading things. And one of the things is that it was never considered the reason why they don’t consider it as adults was, it was never an adult type of disease. Very rarely did an adult get Kawasaki’s. It is known as a pediatric disease. So there are, you know, one out of a blah, blah, blah, blah, blah, blah, blah, blah, blah, adults might get it. But that’s such a rarity that maybe after this, there might be some variation that they give a name to when they start looking at everybody who does it have many of the symptoms, but it is known as a pediatric disease. And it was, I mean, prior to COVID, so that’s okay.
Good point. Thank you for that. And guys, I just want to say one thing, so I want to just pull up the list of who’s going to be here when Oh, let me just update you and if you signed up for this, then we will you know, you will get an email from us if you haven’t already. And of course my of course my, my computer loves to reboot whenever this happens. But let me just pull up one thing sorry about that. Gosh, darn it.
We encourage you guys to sign up in advance and maybe set some reminders for yourselves between the last two sessions that we did. I think I’ve got about 30, 35 messages from people saying that they completely forgot. So I wish that we can set a way that it alerts you the day of, or the day before. So if you are preregistering, especially for some that are two or three weeks out maybe set a little reminder on your calendar or in your phone, if you can.
So guys, let me just tell you the lineup. Okay. so today is Sunday, July 12th, I believe so I will be here and Karen will be here. Wednesday, July 15, Robert Kaner from Cornell medical center. He’s a pulmonologist. We’re gonna be talking about short and longterm respiratory manifestations of Kobe. He’s a pulmonologist, he’s brilliant. He’s a specialist in interstitial lung diseases. Next is going to be where we’re going to have on Sunday, another kind of Q and a and discussion Wednesday, July 22nd, gastrointestinal and hepatic manifestations and nutritional considerations in COVID with gastroenterologist ream Sharia. And in the email, I said, she just put out a big paper on that and I want to really pick her brain about, are there nutritional things that we can do to help with the recovery. And we’re also going to have a neurologist we’re gonna have a cardiologist, but you we’ll send you the schedule just for the next 20 minutes or so if you want to hang around, I don’t want to answer any more questions. I would just love to hear from you guys and comment, feedback, experiences that you might feel comfortable sharing.
We might need to unmute them.
Let me see if people
Can meet themselves. Wendy has you can’t okay. So if you have a question, raise your real hand, not just your computer hand. We’ll okay. Deborra. Let’s see if we can unmute you. I had to borrow up, I have allowed them to mute themselves. Okay, great. Beth is the one that grants usability. You also gave the tin man, his car, his heart Elian, his courage and the scarecrow, his brain feel free to unmute yourself and throw it out there.
Okay. I was just gonna say that seven years ago I was diagnosed with heart failure and through medication and some rehabilitation, it completely resolved. And there were so many things about that experience that is reminiscent of this to me. Now, looking back, I think I had dysautonomia things happening through that. I was on the tilt table. I was diagnosed with pots that resolved. So, I mean, that is one thing that gives me hope is that I’ve been through a crisis before that felt the main weakness hands and arms, just many, many of the same symptoms, extreme fatigue you know, the anxiety, the depression, just so many things about that, but particularly the pots reminds me of this. And so I will say, you know, it does give me hope that this will resolve over time. It took a while.
I mean, it was not quick. And my cardiologist considers me to be likely a non heart failure person anymore. It’s just hard to know because I’m still on the medication. So that does give me hope, but I feel like I’m just going to be honest here. Like my biggest concern, like lately is just, you know, hanging on mentally. My family wants me to tell them that I’m somehow doing better. I’m not, I’m not better. Some days actual worst. I rarely feel better at all, but you know, my anxiety and my mental health right now, I think is what’s kind of concerning me. And some of it’s just me trying to hold it, get together for myself and for others. And so I just, I guess what I’m saying is I just really appreciate that. I do feel heard here, you know, you and Karen and, and your whole team have provided a way for us to, to feel heard. And I’ve walked away from, I guess this is our third time together with some strategies and some ideas. And I’m just, I’m proud of myself too, for setting aside a time for this, I’m setting aside a time for bootcamp. Thank you.
I’m the one that put in the comments like I live alone. I mean, showering is one thing that’s, that’s fine, but you know, I’m, nobody’s going to make the food or do the dishes or do the laundry or any of that, but me. Yeah, it is exhausting.
Thank you so much for that comment, Martha, and I’m going to say this, I’m going to say, I’m proud of you also. And I give you credit because guess what you were the first person that ever spoke in this forum that takes courage, the physiology of the heart failure. That’s similar to this is the weak left ventricle, right? So whereas normally the left ventricle would be what pushes everything back up. That’s why people with heart failure wind up with all that blood in their legs, because you have this problem of a weak ventricle, the blood vessels don’t constrict. And there is a definite this autonomic component in many people. But you know what more importantly than that I hear you, you know, and just to show of hands, if this is helpful to you and you’d like us to continue these, I mean, I’m happy to do this and I’m sure Karen’s happy.
And my team is happy to do this every Sunday because you know what there’s value in this there’s value in being heard, we have three support groups a week for our regular pulmonary wellness program, but this is different and I’m happy to give you the time to speak. And that’s why I wanted to just have this last bit to hear from you. So, but thank you for that comment. And, you know, I would say, God bless you. If I ever said, God bless you to people, but but you know, that does take guts to speak like that. And I hear you. And just one other comment, you don’t have to be strong for anybody else. You don’t have to be strong for anybody right now. Okay. You have to be strong for yourself. And the first rule of lifesaving is you take care of yourself. Like Karen will laugh at this. This is a joke. It’s not a joke. It’s real. But it’s like, when you work in EMS, this is your order of priority yourself, your partner, your ambulance, and your equipment, and then the patient, right? And my point in telling you that is not to make you scared when you get picked up by an ambulance. But to say people, if you’re not okay, you’re no good to anybody else. So please click yourself first. It is not being selfish. It is doing what you have to do.
Cindy has been waiting a long time with her hand up. She is well, she is un-muted already. So I hope she starts talking soon.
Oh, yes. I’m sorry. Can you guys hear me?
Good evening. I look a mess please. Don’t judge. So actually I think I’ve been sick for quite some time. I grew up in the Virgin where I was, I never caught any fluids or anything. Prior to moving here to the States back in January when this whole thing just started you know, when everybody was calling it a hoax and democratic, this, that, and the third I caught through B while I was in the hospital, I asked my boyfriend, asked the doctors to test me for the virus. They paid me no mind, like, Oh no, you know, you don’t have it so on and so forth. It took me, so I had, that’s where my GI problems STEM from since then it you know, it’s been very hard as far as moving forward. I would say back in April when they finally, you know, said, okay, well it’s not a hole.
Then everything was started to shut down. I so that, sorry. So in January it took me about two to three months to walk again. I was beyond sick. I’ve never been that sick in my life. I had to go to the hospital twice back in April that’s when they, I couldn’t smell, I couldn’t taste. I called the doctor and it was like, Oh, well, it’s just treated like a feat. Moving forward. I got tested, I would say around the 17th of April, I got tested three times. All of them were negative on May 7th. That’s when, you know, three days before that, my doctor, when I went to do my blood work said, you don’t have it. I had auntie I didn’t have the antibodies within three days after I caught it before three days, I would say after in, before I moved, I had tingling feeling. I had the told me it was good. I was taking all kinds of [inaudible], everything in the book and nothing really seemed to really work. So I never really knew if it was covered or not until May 7th now my symptoms. So I went, I had endoscopy the day I found out that I had COVID since then my first symptoms were the bloods, knees blood, and my doctor and my GI doctor was just like, Oh, well, that’s cool. You know, you just take, keep taking this stuff. So, yeah.
Yeah. I don’t mean to cut you off, please don’t take this personally, but I just want to say this ladies and gentlemen, we have these meetings, like it’s, it’s really important that we, we don’t have time in the next 13 minutes. I just want to say, like, please, we are more than happy to direct you to the main team, or we’re happy to consult you privately, but
The meeting is, yeah, it’s just not, we don’t have time to go through every single person’s every it, but I do have one question for you that it took you a long time to get back to walking again.
How long did it take you? Two to three months? I was walking, but I felt like I wanted to pass out. I was in pain now. Now my only language symptoms that I have is I have it open if I have something stuck in it.
Alright, thank you so much. And like I said, if anybody wants to reach out to us, it’s, you know, either email@example.com, or Karen’s what, you know, Facebook group. But if we get, you know, 12 minutes, I just want to hear, how can we help you? How can we help you? What what’s been helpful, what would you like to see in future future groups? And we’re going to limit it to 30 seconds or less per answer.
I have one. I think the thing that would help me the most is how to talk to my doctors about this, to get them to really take my symptoms seriously. It’s been a lot of dismissing it as panic attacks or just depression and not hearing my symptoms or taking them seriously. So how do we discuss it with our doctor and have them really listened to us?
Yup. We will hit that next meeting for sure. That’s a great one. I think we talked about it a little bit earlier. I don’t know if you came late, but but yeah, it’s a great question next. We’re in the speed round. So think of your question, Wendy, how do I do this? You’re doing it. You’re doing it
Great. Okay. on the hair loss, I started to get it a couple of weeks ago and I was like, I have no preexisting conditions, no anything, no meds. I’m healthy have been Quito, no inflammatory, but I had my hair in a pony tail for three weeks because I was so sick. So of course, when I brushed my hair out and wash my hair, there was a lot because it wasn’t doing normal shed. So everybody can kind of take a look and see what they were doing before they think that they’re actually experiencing alopecia. I’m getting a couple more monitors per your request, $68 for an aerobic a whole week out. But I’ve also been using my Fitbit, which is when I found it in a dead of sleep. My heart was jumping to 160, 165, waking me into a jolt, which is why gasp for air.
So it may not be that I’m having apnea. Cause I’ve never had that. My BMI is amazing, but a fever, spike, heart rate spike might be causing that jolt, waking up and then waiting for it to go down to fall, back to sleep. And of course like this, normally I’m white, but temperature changes also seem to wake me up in the middle of the night when I go from the a hundred to 101 that I’ve been for 144 days. And in the evenings that spikes one Oh two, 103, one Oh four. I don’t have a monitor to know when it spikes in my sleep, but if this thing is in our brains, if it’s hitting I’m over 30 seconds, if it’s hitting ACE receptors, the pituitary, I mean, it’s all over the place. It could be moving from one to another overstimulating, the receptor hitting neurons, sending false messages, like the micro tremors. My legs are always feeling like Alka seltzer is in them. I think it’s in the brain.
Yeah. I think that’s very possible.
Yeah. I appreciate you guys doing this and it is helpful. Also Medline products. They have no rinse body wash because I’m getting a shower about once every three weeks when I absolutely have to, but I work hospice. So I have those things available and it definitely helps to not be spending energy on something, you know, is going to put you in bed. Absolutely. So there are ways to help yourself and I deal with death all the time. I know what it looks like and this isn’t it. So I’m not scared. I’m irritated and frustrated. But so far I haven’t seen anything that says this is forever and I haven’t seen anything that says, this is going to sneak up on me and I’m going to die. So I do what I can do. I fast a lot and not alone, which is helpful. Anyway, thank you. Somebody else can ever turn,
I’ll speak. Thank you so much. I don’t know if I’m doing this right. Oh God. I actually, the breath is phenomenal and it’s bizarre because I teach breath work and I teach yoga and movement and I was a dancer to seniors. And when my breath, when I couldn’t breathe, I really was shocking to me. It’s very scary and I have a host of other issues in terms of health, but when you can’t breathe, I’ve never experienced that. And it’s coming from teaching people how to breathe and the gift of breath. And then when it’s taken away or it’s compromised, it’s so frightening. It’s not like anything I’ve ever experienced and I’m still experiencing it. It’s my breath is nowhere near what it used to be. And because I teach it, I know how to have that full breath. So I can absolutely attest to the me for breath work.
And I love the bootcamp. I just started on a day four. But I will, I think that the breath work was my saving grace because as soon as I couldn’t breathe, I started doing my deep breathing. I started doing my yoga, I started my meditation. So throughout it, I’ve done and I’ve been to the ER twice, but I really, it kept me out of the hospital. I’ve been sick since March 11, but I feel so blessed that I knew to do that. And I didn’t lay in bed. I moved. So whatever you, everything he was saying I so have experienced and believe completely,
Thank you so much, Dawn. And I’m glad you’re doing bootcamp. You know, one thing that we’ve been trying to get out to people since day one is that, well, first of all, the American lung associations motto is if you can’t breathe, nothing else matters and that’s true as can be. But the thing is that, you know, we’ve been trying to get out to people early, like this whole idea of proning people and different breathing exercises it’s everything. And you know, my, my thinking and I know Marion feels the same way. You know, in our work with COVID patients, is that what we thought bootcamp was, you know, a year ago is very different than COVID. And let me just say this, we will start. If people think that they’re interested in doing it, we will start with a daily session of 30 minutes.
That will include very, very gentle breathing. And I don’t even say exercise yet because we don’t know. And I’ve had experiences with patients where you know, they do a little bit and then they get set back. Not everybody. I have patients now who are doing a little bit, and then they’re able to do a little bit more and then they’re able to do a little bit more. So everything we do will be totally done to your tolerance, but we’ll think of a time I’m thinking 12 noon would be a good time and I’m happy to do the first one tomorrow at 12 noon. We just have to figure out where to where to do it, but we’ll send out an email to tell you where it’s going to be. And it’s just because I agree. I think the breath is the key to everything. And if you can’t exercise right now, you know, similarly in line with what I said before, about as the water starts to recede, I think the breathing will help that water start to recede and quiet the inflammation and just kind of create the space for healing.
I put low
Yes to Bora.
I am not a COVID patient, but I’ve lived for a long time with alveolar lung disease. I have sarcoidosis and I’m at stage four now. So as information about COVID-19 progressed and more of the symptomology was became, came out public. I kept thinking, gee, this really is familiar to me. And the reason that I’m here is that I want to learn what is going to what belong haulers are experiencing. Because to be honest with you, just about the time you close your practice, I put myself into isolation. I have no intention of coming out until the numbers are declining as rapidly as they increased. And to all of the COVID survivors here, I want to tell you that I really hold you in the bottom of my heart. And no, I don’t have words to express how much I admire you and what a human being I think you are.
And I’m not doing this to butter you up or blow, smoke up your skirt, but I’m doing this because when I met you in 2007, I did not really think that I would be breathing as well as I am at this point. And having lived as long as I have will compromise the lungs. I know that if we put in the effort, we will most have a good result. And the objective that you’ve always talked about is living with our breathing condition, you know, and to live as well as we can. And I just want you to know how much I really appreciate what you’re doing to make that possible. I’m sorry that the COVID survivors have now joined me in this experience of having a challenged lungs, but I admire your courage and your willingness to take this on and make the adjustments that are necessary.
And for the comment about the going to the doctor and being hurt. What I can tell you is that in the military, what they used to tell us is if you don’t document it, doesn’t need to just, okay. A doctor is only with you for so, so many minutes of the appointment you’re with yourself, 24 seven, all the information you can bring to the conversation is that much more ammunition in your belt to help you deal with this. So I really encourage people to keep that diary because it helps you to understand what you’re going through to know that it’s not some Hocus Pocus that’s going on in your mind, because believe me, I heard that a lot before I got diagnosed a lot nine months of having people tell me I was crazy when that was not what was happening. That don’t mean you’re not [inaudible],
That’s on me. You may have some other stuff going on, but that don’t mean you’re not crazy.
I met, I admit that I’m crazy, but I greatly appreciated what you’re doing. Just what you said back in 2007, you were going to do, you know, unfortunately I haven’t hit the lottery yet so that I can send you that big pot of money, but I don’t need it. I have enough money. I am a, I am a 100% mostly supporter and I’m going to keep doing it. And I’m going to keep telling people on my Facebook page, put your money where your mouth is. This student is here to support you to help you live your best life. This is not somebody who’s trying to stick their hands in the pot in your pocket.
They’re going to think I’m paying you in a minute. Just
No, I’m just, I’m just really 100%. Yeah,
Listen, I don’t even know this lady, ladies and gentlemen, thank you so much for being here. I’m going to send out the email in the 15 minutes
About tomorrow’s breath session and Beth looks like she wants to say something.
I want to say two things. One you’re not going to like, but there is a, been a very patient lady here. Very, very bad patient achy. Oh, it’s Veronica. But before she speaks, I wanted to tell everybody I’d put in the chat. If you want to consult with Noah, it’s firstname.lastname@example.org or email@example.com. And I see I spelled wellness wrong. It has two Wells. So go ahead, Veronica, as quick as you can. I just want to thank you for your time. This is my first time meeting with you guys here. And I really, really appreciate the time that you’re putting to educate all of us because not everybody’s got that qualification or education. So I’d love to pick your brain more. My husband is fighting for his life right now on a ventilator. And I don’t want to cry. I have COVID the symptoms that he had, my entire family has it. And it’s not a joke. My husband wasn’t diligent. I mean diligent about how he went to the store. He washed his hands. He wore mask. We would Lysol everything, wash everything. We’d take our shoes off before we walked in the house, our clothes and he got it. So it does not discriminate my grandchildren having thank God they’re asymptomatic. And they’re cleared tomorrow. I’ve been cleared for almost a week now, which is really scary because how do I really know? I’m not contagious? I don’t know that.
Where do you live? Veronica?
I just moved from California to Missouri. What time is it there? Eight.
Okay. If you want, send me an email right now. I could see you at 9:00 PM. Your time 10:00 PM. My time, which is in one hour. Okay. Ladies and gentlemen, I think that’s a great place to end. Thank you so much for being here. We’re going to breathe together tomorrow. And I want to say Karen Bishop deserves a lot of praise because she is really leading the charge and getting the word out for long haulers. So thank you all for being here and have a wonderful night and Veronica firstname.lastname@example.org. And I’ll see you in one hour. If you want it. Don’t stand me up. I have a good evening, buddy.