>> From coast to coast, Blue Cross and Blue Shield companies stand side by side with our neighbors, investing in local non-profits during the most challenging times, using data to drive solutions and support healthier living and turning ideas into action, remaining true in our commitment to achieve health equity for the health of America.

>> As the population of patients recovering from COVID-19 grows, there are increasing reports of persistent and prolonged health problems with varying degrees of illness that can last for months or longer.

Our understanding of post-acute COVID-19 syndrome -- it's also called long haulers -- is evolving and is challenging an already stressed healthcare system.

Joining us today on "Second Opinion," primary care physician Dr. Lou Papa from the University of Rochester Medical Center.

>> This was all brand new.

We weren't really talking a lot about post COVID.

They were calling it the "long haulers" at that point.

>> Rehabilitation specialist Dr. David Putrino from Mount Sinai Health System.

>> 95% of our 1,600 patients that we have seen for PACS so far were not hospitalized.

>> And Jeff Shepanski, who is here to tell us his personal story.

>> Just so you know, if I stumble over my words, I have the brain fog.

It's hard for me to put, at times, what I'm thinking into words.

>> I'm Joan Lunden, and it's all coming up on "Second Opinion."

And thank you all for being here today.

As of September 2021, more than 13% of the US population has been infected with COVID-19 and 1 in 500 people have died from the infection.

Back in December 2020, the US set a record at that time for the most cases and the most deaths in any month since the beginning of the pandemic.

So, Jeff, let me come to you, 'cause it was right about that time, I think, that COVID kind of entered your household.

It was your wife first.

Tell us what was happening.

>> My wife came home from work.

I was already home from work, and she said that she found out that she was exposed to COVID in a contact trace.

One of her coworkers claimed, you know, first it was a sinus problem, then it was allergies.

Anything but COVID.

>> Yeah.

>> Until she got named in the contact trace.

>> Yeah, typical, yeah.

>> She came home, she got tested, she was positive, and at that point, you know, she's positive, the rest of the household.

>> So you got tested.

In the beginning you, weren't but then -- And you have two teens.

And were they also positive?

>> They experienced symptoms, but they didn't -- they did not get tested.

>> So what about you?

What happened next?

>> I started having -- not feeling well.

I thought I had a sinus infection, and you know, 'cause, normally, the spring and the fall, I get sinus infections.

That's just normal for me.

I thought I had a sinus infection and just didn't feel well.

Went and got tested on that Monday.

I was negative.

Went, you know, through the week and started feeling worse, got tested again, and test came back positive.

I was actually at the urgent care getting tested.

Right after the test, the doctor came in to take -- you know, do an exam on me, and I was, with the dehydration and everything I went through, I actually passed out and I had to go to Strong.

They had me in the emergency room for a couple hours, fluids, sent me home.

>> And I should say, Strong is the local hospital.

>> Strong Memorial Hospital, yes.

>> Yeah.

>> Went home, and I just still kept getting worse and worse.

We already knew, at that point, that I was COVID positive.

The body aches, the headaches, the fever.

>> Wow.

>> And it got to the point where, on Christmas Day, of all days, my brother came over with a pulse oximetry and left it on the the porch because he didn't want to get exposed to what was going on in the house.

And we did my oximetry on my finger and it was in the 70s for my oxygen level.

>> So, now, this doesn't always happen this way, but we have the advantage that Dr. Lou Papa is your doctor.

>> Yes.

>> So how sick was he?

>> He was pretty sick.

I mean, his time course was classic.

You know, you get infected and you have the symptoms for about a week or so, give or take a day, and then you start to decline.

And he actually contacted one of my colleagues, Dr. Walker, Kristen Walker, who was on call, and told her what was going on.

And told him to go to the emergency room.

'Cause that's not unusual that we see, you know -- We worry when the pulse ox, or the oxygen level, drops below 90% to 89%, and it's really bad if it's 85% or below.

His was in the 70s.

And that's not unusual.

They're not even -- You know, they're feeling bad, but for 70, you should be feeling awful.

And it's this weird thing with people that get COVID pneumonia, where their oxygen looks a lot worse than they do, and it's really concerning.

>> Did he have any other underlying conditions that you were also concerned about?

>> Right, so we worry about people that are going to get COVID and get sick with COVID if they have certain conditions.

If you're elderly -- which he's not -- and if you have any underlying medical problems, like diabetes or immunocompression, which Jeff does not.

But Jeff has hypertension and Jeff's body mass index puts him at an increased risk for it.

We know that people who are overweight or obese have a high risk of getting the complications.

>> To me, you look like a big, strong guy.

>> I would never tell that to his face.

That's why I have witnesses.

[ Laughter ] >> So, but you were sent home again.

So, then... >> Well, on Christmas Day, they admitted me.

The week before, when I went, they did a chest x-ray and they found one area in my lung had pneumonia.

So they sent me home and, hopefully, you know -- >> To get better.

>> You know, fight it off at home.

When I went back on Christmas Day, they did a chest x-ray, and both my lungs were completely full of the pneumonia.

>> Now, just so you know, you know, the viewers and you may say, "My God, he had pneumonia when he went in the first time."

>> Yeah.

>> Right?

This was when we had that horrific surge, right, where it's probably twice of what it is right now, and the hospitals were so full, so they were doing everything they could that, if anybody that could go home, they were sending home.

Obviously, by the time he got there the second time, he was too sick to send home.

>> And as I understand, you were put in the COVID floor, but then you were moved to ICU.

>> Yep.

>> So how long was that stay?

>> The total stay was for about three weeks.

The first night there, I -- Just so you know, if I stumble over my words, I have the brain fog.

It's hard for me to put, at times, what I'm thinking into words.

It's just -- >> Wow.

>> And this is... >> All new to you.

>> It's horrible.

It's embarrassing at times.

It's -- But you got to fight through it.

I'm trying to fight through it.

Keep pushing forward.

That's all I can do is got to stay positive and push forward.

They admitted me to the COVID floor, and they were doing blood gases and all that stuff.

And my level was not increasing even though they had me on supplemental oxygen.

It got to the point where they put me on a high-flow cannula, and that's like a garden hose.

It's what it felt like, a garden hose underneath my nose.

And you know, once you get to that point, they told me I can't go any further, you can't go any higher on the oxygen unless you're intubated.

>> And that just must have been so scary.

I know I heard that you could barely talk at that point.

>> I could barely -- I could speak in two or three words at a time.

You know, you're getting told that you're gonna be intubated, it's just that this was the only option, you know, unless I responded to medication.

I'm scared, you know.

I'm thinking I'm never gonna see my family again.

I'm going through this, my family's at home.

They can't be there with me.

>> That's right.

>> They gave me an iPad to call my family, and the hardest thing I -- I had to give my oldest son the man speech.

I had to tell them that he's the one that's got to pick up where I -- 'cause I can't be there.

And I had to, you know, try to explain to my wife where the life insurance policy is, where the will is.

'Cause I didn't think, if I was going to go on a vent, I was going to come home.

>> But you were just short of that and fortunately didn't go on the vent.

>> Right.

>> And after a couple weeks, they did send you home.

>> Yes, I just wanted to go -- I wanted to go home.

I spent a week in the ICU.

I did respond to the medicine that they put me on, and they were able to wean me off of the oxygen.

>> But when you got home, a lot of these things just kept on going, right?

How were you feeling at that point?

>> When I got home, I still had the headache, I still had the body ache, the hip pain is horrible, shortness of breath where just walking up stairs, it takes its toll on me.

When I'm at work, if I walk down the hall, I'm exhausted by the time I get to the other end of the hall.

>> Wow.

>> By the time I get home from work at night, I just want to sit in my recliner 'cause I'm ready to call it a night.

I'm just exhausted.

I'm physically exhausted.

And the brain fog, the headache.

Like right now, I have the COVID headache, and it's just there's nothing that'll do anything for it.

And it's just -- it's horrible.

So, Lou -- And I should just say this was before there were any vaccines out there, so you didn't even have the opportunity to have a vaccine, which could have really reduced this.

>> Exactly.

>> But he came to you with all these symptoms.

How do you make -- What do you do with this, and how do you make a diagnosis?

>> So, you know, this was all brand new.

We weren't really talking a lot about post COVID.

They were calling it the "long haulers" at that point.

And it was just kind of a side story, right?

Because we were still dealing with the pandemic.

'Cause, again, like you state, this was in the big surge, and the vaccine literally came out when Jeff went into the hospital.

So he had this constellation of symptoms, and you know, we were both scratching our heads.

And we did talk a little bit of post COVID 'cause it was a new thing, but I rechecked everything.

I rechecked all of his blood work, which was all abnormal in the hospital.

On recheck, all normal.

All normal.

Checked his thyroid.

We looked at his EKG, we rechecked the chest x-ray -- normal.

Symptoms persisted, and a lot of this was just through, you know, kind of the electronic portal.

You know, "Dr. Papa, I'm still feeling this way."

We rechecked an EKG.

We did something called a Holter monitor to see where the palpitations were coming from.

All normal.

I was struggling to help him, as much as he was struggling with the symptoms.

>> So you got an alert that there was something called post-acute COVID-19 syndrome.

>> Correct.

>> Like, it never existed before.

>> Correct.

>> So, at that point, you could put a name to it.

>> Right, right.

And which is a huge sigh of relief because you're dealing with this.

Now the medical community recognizes it.

They have a name for it.

They're scientifically -- You may not think that's a big deal, to have something just with some initials, but that means it's a syndrome.

That means it's something we're standardizing, it means it's something we're going to assess scientifically with good scientists that have good experience in this area.

So that allows me to watch out for the information that comes out about that stuff.

>> But it's evidence based.

But we're so early, we're still so early in it that we're still -- Let me come to you, Dr. Putrino.

You're part of the Center for Post-COVID Care at Mount Sinai in New York.

So you've got to see people like Jeff every day.

What are the symptoms that you commonly see with this syndrome?

>> Yeah, well, with post-acute COVID syndrome, some of the most common symptoms are exactly what Jeff just mentioned.

Cognitive fog is occurring in around 80% of our patients with PACS.

We've got people reporting shortness of breath, extreme fatigue, what we call post-exertional symptom exacerbation.

So, any form of exertion, whether that be cognitive, physical, or emotional exertion causes flaring in symptoms.

And then, we have all sorts of pain experiences.

So headache is extremely common, pain and tingling and numbness down the arms.

Also, that can extend into the limbs.

I believe Jeff mentioned some pain in his hip, as well.

And we've been cataloging around 50 or 60 different symptoms that relate to this novel post-viral syndrome that we've been seeing.

>> So it's not only physical exertion that can get things to flare up.

It's mental and emotional exertion that can also make it flare up?

>> Exactly.

When we first started seeing patients with post-acute COVID syndrome, a lot of the work that we typically do pre-COVID in my practice is focused around helping people with traumatic brain injury, post-concussion syndrome, and other less common conditions, such as Ehlers-Danlos syndrome, where patients have a condition that we call dysautonomia, which is dysfunction of the autonomic nervous system.

So we have a nervous system in our body called the autonomic nervous system, and it's focused on controlling all of these things that you don't typically need to think about.

So, when your heart should beat, when you should sweat, when you should feel cold, when you should feel hot.

You know, all of these little things that your body just does automatically.

You don't consciously think about it.

And any sort of trauma, whether it be immune-based trauma, which is what COVID causes, or physical trauma, like a traumatic brain injury, can knock this system out of balance, and all of a sudden, you start to see all of these very unusual symptoms.

They're very hard to measure.

I can't tell you how many times we've heard from physicians.

"Well, I ran all of the regular testing, and everything seems fine, everything's coming back normal."

Well, that's really common with dysautonomia.

We see these invisible symptoms.

And, so, we had a bit of a leg up on how to initially start to manage this and how to put a label on it because, as Dr. Papa mentioned, it's very important to be able to assist physicians in labeling things.

So, you know, this is -- even if it's not exactly this, this is what it looks like, so let's start with management from there.

>> I have a couple questions.

First of all, do you have to, Lou, get as sick as Jeff got in order to have this PACS, the post-acute COVID syndrome?

>> Right.

And it's it's a very good question.

The people who are at higher risk for COVID are the ones who get sicker, especially if they're in the ICU.

But you don't have to be that sick.

>> So you can have mild symptoms and think that you, like, "Okay, I had it.

It's done, it's over."

>> Right.

>> And you can still come down with this syndrome?

There's definitely association with the sicker you are, but if you say, "Oh, I'm going to get a mild case.

I don't have to worry about post COVID," that doesn't necessarily mean that's the case.

>> Dr. Putrino, are there certain people who are more at risk become long haulers?

>> You know, this is -- This is a very important question, and it's a difficult one to answer.

I want to start by maybe with a couple of definitions.

So we've heard about long hauler, we've heard about long COVID, and we've also heard about PASC, which is what the NIH calls it -- post-acute sequelae of COVID.

Those are terms that describe anybody who got sick with COVID and are having persistent long-term symptoms afterwards.

When we think about someone like Jeff's post-acute COVID syndrome, so tests are showing up normal, and he has this very mysterious, troubling, and unpredictable constellation of symptoms that that are emerging, that's what we call post-acute COVID syndrome.

And when we think about PACS the syndrome, what we've been seeing is it's very troubling because there's no real pattern to who gets it.

95% of our 1,600 patients that we have seen for PACS so far were not hospitalized.

So they did not have severe initial disease.

>> That's kind of startling, yeah.

>> It is startling.

The median age of our patients are 42, and disproportionately, they have no significant medical history.

So, although we do have individuals who have diabetes, have certain lifestyle diseases, have hypertension, et cetera, the majority of our patients do not.

The majority of our patients were previously fit and healthy.

I've lost count of the number of patients that have said to me, "I used to run marathons before I got COVID.

This isn't right.

I shouldn't be out of breath climbing the stairs."

You know, so that is a common occurrence.

We have previously very fit and healthy individuals with PACS.

And in addition, it's across the age range.

We've got patients in our rehab program that are over 90 in age, and we have children that we're managing in our pediatric center.

>> I want to make one thing perfectly clear.

You can't get this from the vaccine.

>> No, not at all.

>> Okay, I just want to make sure.

>> They have not seen that at all because, remember, the vaccine is not a live vaccine.

You need the whole virus with all of its genetic material, all of its material to get into your body, because all it wants to do is get in there and replicate.

>> Yeah.

>> And as it replicates, it creates destruction.

The vaccine is just a piece of the virus, just a spike protein to trick our body into developing an immune response.

So this is not a result -- This is a result of the infection, right?

>> Okay.

>> This is a result of the entire virus getting in there and wreaking havoc.

It is the storm that's moving through.

>> Absolutely.

I just want to make sure everybody home doesn't make any mistake on that.

Dr. Putrino, what do you do?

How do you work with these patients?

>> Yeah, that's a really good question.

Rehabilitation has been challenging because many of our patients come to us, and their symptoms are so extraordinarily flared that we need to really start from the lowest level.

So I think the first step, you know, for any physicians who may be listening -- the first step that we always take is to rule out serious pathology that could be life-threatening.

Not to say that PACS is not serious, but to make sure that -- If someone comes to you and says, "I'm short of breath climbing a flight of stairs, I'm extremely fatigued, my heart feels like it's racing," the first thing you need to do is make sure that they're not going to have a heart attack or they're not having some serious heart pathology.

So always with all of our patients, that is our first step, is to make sure that their heart is healthy, their lungs are healthy, there's nothing troubling that would lead to issues with organ function.

The next step that we move on to is a lot of behavioral education, working with patients to identify specific things that will trigger their symptoms.

So, typically, what we've found in a lot of our patients is that anything that causes the autonomic nervous system to sort of switch its phase from, you know, one function level to the next will cause symptom presentation.

So things like eating a big meal, which causes your stomach to stretch, which then causes your autonomic nervous system to say, "Oh, they're full.

I should send off the 'full,' you know, signal."

That will cause an explosion if symptoms.

And so education around smaller meals more regularly often will alleviate that trigger from occurring.

Stepping into a hot shower in the morning causes your heart rate to spike.

So that causes patients to experience severe symptoms.

So explaining to the patients, "Okay, while we're getting your autonomic nervous system back under control, you're gonna start with tepid water and slowly build up the heat so that your heart rate can match it over time, as opposed to just jumping into a warm shower immediately.

So all of these little nuances that can turn people from having a terrible day to a bearable day.

That's where we start so that patients get a feeling like their symptoms are under control, and although they're not feeling good, they feel like they have some sort of control over the symptoms that they're experiencing.

>> And what comes next?

>> So, what comes next is autonomic rehabilitation.

So, this is a specific brand of rehabilitation that targets the autonomic nervous system, and, over time, it slowly helps your body to get used to challenges to the autonomic nervous system.

So, with most patients with PACS, we actually need to start with the patient laying flat, because their symptoms are so extreme that even trying to do some of these exercises upright are just too exertional.

So we will start with very gentle movements that trigger the body's autonomic nervous system just a little, but just enough that they can slowly tolerate it, and then, over time, we increase the challenge with a lot of respect toward patients' symptom exacerbation.

So we really need to make sure that nothing we're doing is high-exertion enough to trigger symptoms and we need to move very, very slowly with a lot of respect to that.

As -- What we've seen over time, as we've rehabilitated hundreds of patients, is that this rehabilitation approach eases symptoms.

We don't think it's a cure, but we do believe that it is addressing some of the most debilitating symptoms.

And what we've seen is that after roughly 3 to 4 months of intensive rehabilitation, we can discharge patients at a point where they're saying, "I feel like I did pre-COVID and I feel like I can continue management alone."

Now, I will caution that we've also seen relapses after discharge, indicating to us that this is something that is going to be chronic management, that we're going to have to keep an eye on over time, and for how long, we're not sure.

>> How you doing now, Jeff?

>> Taking it one day at a time.

And, you know, I get my good days, I get bad days.

You know, there's days where I feel like garbage.

But, you know, you just got to keep pushing forward.

And people -- You know, if I can help one person today, knowing my story, then it's all worth it, what I went through.

>> So, what's that message out there to that one person?

>> You're not alone.

This isn't in your head.

People tell you it's in your head.

You are going through these symptoms.

They are real.

You are going through this.

And, you know, all you can do is just keep pushing forward.

>> And your one message?

>> My message is, get vaccinated, alright?

The vaccine prevents COVID, right?

When you look at even what we're seeing now, the vast majority of people that are in the hospital and getting sick are unvaccinated or people who are immunocompromised.

If you end up getting COVID significantly and you're vaccinated, you reduce your risk of getting post-COVID by almost 40% to 50%, some of the early studies show.

So if you don't want post-COVID, you don't want COVID, and if you don't want COVID, then you do want the vaccine.

>> A good place to end.

Thank you, Lou.

Dr. Putrino, thank you.

And, Jeff, we wish you good health.

>> Thank you.

>> Thank you all for being here today.

And thank you to all of our medical advisers, who are with us every step of the way on this program to ensure that we bring you evidence-based, accurate medical information.

And, of course, to all of you at home, thank you for watching.

From all of here at "Second Opinion," we encourage you to take charge of your healthcare.

I'm Joan Lunden.

Be well.

♪ >> Find more information about this series at SecondOpinion-TV.org.

You can also follow us on Facebook and YouTube.

>> From coast to coast, Blue Cross and Blue Shield companies stand side by side with our neighbors, investing in local non-profits during the most challenging times, using data to drive solutions and support healthier living and turning ideas into action, remaining true in our commitment to achieve health equity for the health of America.

>> "Second Opinion," with Joan Lunden, is produced in conjunction with UR Medicine, part of the University of Rochester Medical Center, Rochester, New York.