Think Out Loud

Oregonians share experiences with long COVID-19

By Julie Sabatier (OPB)
Oct. 27, 2021 8 p.m. Updated: Nov. 10, 2021 11:47 p.m.

Broadcast: Thursday, Oct. 28

Amy Watson is a preschool teacher who first experienced COVID-19 symptoms in March of 2020, and she’s still dealing with what has come to be known as long COVID. She started a support group for others with the condition and found that people’s symptoms run the gamut and can include neurological problems, extreme fatigue, an elevated heart rate and digestive issues. Scott McClellan is a game designer who also came down with COVID-19 early in the pandemic. He considers himself 95% recovered but still has some of the symptoms. We hear from McClellan and Watson about their experiences as COVID long haulers.

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The following transcript was created by a computer and edited by a volunteer.

Dave Miller: From the Gert Boyle Studio at OPB, this is Think Out Loud. I’m Dave Miller. It has been exactly 20 months since the first Oregonian tested positive for COVID-19, more than 362,000 cases have followed. More than 19,000 Oregonians have been hospitalized and 4,334 Oregonians have died. It’s harder to get a clear number of so-called long haulers, people who are dealing with the serious and lingering effects of the virus many months or more than a year after they were initially infected. But we’re going to hear the stories of two Oregonians right now who have been dealing with long COVID. Amy Watson is a preschool teacher and the founder of the support group, Long Haul COVID Fighters, the support group that actually coined the term long haulers nationwide. Scott McClellan is a game developer. Welcome to you both.

Scott McClellan: Hello.

Amy Watson: Hi, thanks for having us.

Miller: Thanks for joining us. Amy Watson first. How are you feeling today?

Watson: Honestly, I’m completely exhausted. I’m back to work and I am a preschool teacher and my job is pretty physical and cognitively demanding. So it takes a lot of my, what we call spoons in the chronic illness world, just you know, to do my job.

Miller: What’s a spoon?

Watson: It’s a reference to a spoon theory, that you have like a number of spoons that you can use in a day, and those might be used for things like self care, like showering or preparing food or doing your job or childcare or any of those kind of activities of daily living. So, some days you use your energy up in one area of life and then in other areas kind of just get put on the backburner for a bit until you have more spoons.

Miller: And Scott McClellan, how are you feeling today?

McClellan: I’m feeling good.

Miller: Does good in October of 2021, does it mean the same thing as October of 2019?

McClellan: Not exactly. There are persistent symptoms that I have that I did not have before COVID. I have persistent tinnitus and I have Raynaud’s syndrome now, where my hands are always freezing and some other extremities, like my knees, get really cold and stuff like that. Those are for the persistent ones, when I’m not having a relapse, but I’m kind of used to them by now. It’s been so long. So yeah, today is a good day.

Miller: Can you give us a sense for some of your other symptoms that you’ve had over the last 19 months?

McClellan: They have varied a lot. It seems like this disease comes in phases. So the initial disease hit me very hard and I thought I was having a heart attack and I later learned it was my autonomic nervous system failing and POTS.

Miller: That’s the nervous system that does all the stuff that we don’t think about, is that right?

McClellan: Correct.

Watson: Exactly.

McClellan: So, initially it felt like my body forgot how to breathe and I just spent days awake just manually breathing because when I start to fall asleep I would just stop breathing. As I got a little bit more comfortable, I was able to get to sleep. But I would often wake up when I’d stop breathing. So it’s like extreme, extreme sleep apnea.

Watson: That sounds very familiar.

McClellan: It’s very, very common among long haulers. And the other issues were the typical POTS dysautonomia where your vascular system essentially does not react when you stand or sit up. So if you go from a sitting position to a standing position or laying position to a sitting up, it took me a good 10 minutes before my vascular system would catch up, so every time I stood or sat up I’d see stars, I’d get really bad vertigo, lose my balance, fall over occasionally. That lasted for about five months. It pretty much passed except for relapses. So, a lot of us, not everybody’s symptoms are the same, but the symptoms that I’ve experienced seem to be pretty common with long haulers. And after that initial phase, I would feel good for a stretch of days to even a week and be like, hey, oh, hey, I’m out of the woods, this is great. And then I would get hit by this nasty malaise, it’s hard to describe, it’s like extreme fatigue where everything aches like crazy, like a deep burning myalgia coming from your bones and it would just leave you bedridden for days at a time sometimes. And it seemed to be triggered by all sorts of things. Initially it really felt diet related. So Mast Cell Activation Syndrome is one of the things that’s been brought up a lot by doctors and they say like if you have allergies, if you’ve ever had allergies, you have some, you’re on the spectrum of Mast Cell Activation Syndrome. But when you’re hit with a virus like SARS or MERS or COVID, it really just knocks things out of whack and everything is exponential. So if you ever had any kind of issues in your past, everything is just amplified like crazy. And so just eating regular food that you would generally eat would set off this histamine release and your body reacts to histamine by releasing Epinephrine. So you’re just loaded with adrenaline all the time. So when you hear about long haulers with anxiety, that’s like it’s a physical thing that’s happening in the body with the Epinephrine that’s released and it’s very, very difficult to control. It causes all sorts of horrible, horrible things.

Miller: Amy Watson.

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Watson: It keeps us in fight or flight mode.

Miller: For 19 months?

Watson: Oh, yes.

Miller: I’ve heard you’re chiming in and I’m happy to hear your thoughts on all this as well. And I got the sense that there are some common groupings of symptoms for people with long COVID, but one of the hallmarks of this disease is also how idiosyncratic it is, that each person seems to have their own version of their own terrible fingerprint. Can you give us a sense for your symptoms since March of 2020?

Watson: I’m absolutely in line with Scott. He’s quite a bit ahead of me in the recovery game here. I’m probably at about 45-50% of my own pre COVID function. But the neurological issues are the most challenging because there are no quick, easy fixes. It’s a lot of therapy, a lot of, like I still am struggling with vertigo and dizziness and working with a neuro PT on balance issues. But I also have POTS and Mast Cell Activation Syndrome and POTS, Postural Orthostatic Tachycardia Syndrome. And there are different kinds of POTS. I happen to have one that also involves hypertension and I have never had high blood pressure before in my life. And now I have a pretty scary stage two hypertension and renal artery stenosis and all kinds of vocabulary added to my life that I never, never thought I needed to know about. Other things like my neurological deficits, like word finding or word swapping or just not being able to recall information that you know, like my driver’s license number that I’ve had since I was 15. Sometimes I just can’t pull that data up, your RAM is like slowed way down, which is actually, I stole that from Scott. It’s very much like my body used to be an iPhone 11 but now I’m like an iPhone 4s or something and I can never get fully recharged. No amount of sleep is refreshing, the fatigue and malaise are pretty heavy and debilitating and a lot, I mean my list of symptoms goes on and on, but like lots of GI stuff, gastroparesis, my stomach shuts down and just stops working. And it’s all that, those things that we take for granted that our brain does for us, breathing, swallowing, digestion. And because this disease is vascular, there is no system in the body that is exempt from damage from COVID-19. There’s no way to know who’s going to end up a long hauler, who’s going to rebound in a few days.

Miller: You’re talking about symptoms affecting so many different bodily systems, which I imagine means seeing a whole array of different specialists. Do you feel like anybody is focused on the total you, that any doctor or nurse practitioner, healthcare person has a global view of what’s going on with you right now?

Watson: Honestly, for the first year I did not. I have so much empathy for the medical profession because they have been on the front lines and dealing with this onslaught of acute COVID patients and we just kind of got shoved to the back burner for a very long time because the demands of the pandemic were just so great that there wasn’t anyone who had the time or the energy or the bandwidth or the staffing to really kind of dig into this and figure out what is happening. Thankfully there is a ton of research underway right now. We’re starting to see results coming out of that that are shedding some light on bits and pieces of the puzzle, pieces are coming together. But I don’t think we have the whole picture yet. As far as me personally, I found a new physician, in March who really is trying to suss this out and figure out how to help patients have a better quality of life and learn to live with what we’ve got because some of this stuff hopefully will improve in time. I’m certainly holding out hope for that. But some of this may be just chronic and then we have to learn to adapt to our new way of life. Like I haven’t ridden my bicycle in two years because my balance is not trustworthy. So a lot of things that were things we enjoyed in the before times, as we call them, are not available to us while we’re still recovering from COVID.

Miller: If you’re just tuning in, we’re talking right now with two Portlanders who have both been dealing with a whole constellation of COVID-19 related symptoms since March of 2020. Scott McClellan, back in March, OHSU made a pretty big splash when they announced their long COVID program. They said that patients would receive ‘comprehensive care from a collaborative healthcare team using current best practices’. There was a lot of hope at that time for people who are dealing with long COVID. To what extent has that really helped people?

McClellan: I can’t speak to that program. I have not participated in it. I reached out to Dr. Patterson at IncellDX and I’ve been going through that protocol. So I’ve been given medication twice and had my blood work done where the initial blood work was done in November of 2020 and it came back, my markers were way off the chart. It was like 45 times the inflammation that it should be for a lot of the markers. My VEGF, which is the vascular endothelial growth factor, was extremely high, and that’s one of the things they believe causes your extremities to get really cold. It’s essentially when you cut your finger, it’s the protein that makes your arteries and veins grow to replace those that have been damaged. And when that growth factor is high you start getting these buzzing feelings throughout your body and just discomfort in that very strange fashion. There’s also CCL5 RANTES is another marker that is typical in long haulers that they find. So I was given an HIV treatment called Maraviroc as well as Ivermectin and the latest treatment I had was Maraviroc plus Pravastatin. I would say the initial treatment I had, I had horrible GI symptoms like unimaginable discomfort and everything else you could imagine that goes with GI. And about two weeks after that initial treatment, my GI symptoms went away and I have not experienced them since then.

Miller: One of the issues that we heard certainly at the beginning when we first started becoming aware of long haulers, people with long COVID was something similar to what we’ve seen for years for people with chronic fatigue syndrome or Lyme disease, which is a lot of them would say, one of the things I’m running into now is doctors or friends or family, they don’t totally believe me. I’m coming forward with all of these issues that I’ve never had in my body before, but they’re sort of hard to prove for people who are focused on proof. And so not only am I dealing with my body, but I’m dealing with a society which to one extent or another just doesn’t really, isn’t sure that I have what I say I have. Amy Watson, how much have you had to deal with that?

Watson: I would say science loves metrics and the things that you can measure with blood work. I also participated in the same study that Scott did and had the highest level of RANTES out of all of the patients in that study. I haven’t revisited that, so I’m curious to see where I’m at at this point. The things that you can prove: your temperature, your blood pressure, your weight, your blood oxygen level. Those are things that can translate to an understanding of what’s happening in someone’s body and certainly of course blood work and laboratory testing and imaging, etcetera. But it’s hard to convey how you feel. What your pain is like, what your energy level is like what your level of function is and to have people question that or to not believe that, is it’s pretty devastating for patients who are going through such a difficult and frustrating time when we’re in such desperate need of medical care and the medical community is just completely slammed and overwhelmed dealing with acute COVID cases. So I have certainly seen that a lot in my support groups, countless stories of people being gaslit by their family physicians have known for decades, and I think it’s very hard for doctors to admit that they don’t have all the answers and certainly we don’t expect them to have all the answers for a novel virus. And as you said, there are a lot of similarities between long COVID and other post viral illnesses such as ME/CFS, POTS, dysautonomia, countless connections and we’re really hoping that the funding that the NIH is using to study long COVID will also find answers for people who are suffering from those other types of conditions as well.

Miller: Scott McClellan, what has your experience with long COVID been like emotionally? How has it affected you emotionally?

McClellan: That’s a great question. Emotionally, I’ve never had any kind of disease or experience that really made me question reality, where I really kind of felt like I lost my sense of identity at times and I have come out of it more positive I think than I was before. I always look for the good in people. So yeah, I think I’m actually in a better place now and that’s part of the healing process. Really, you have to stay positive. And one of the things I’ve told other long haulers is you need to get off those Facebook groups because typically people post their worst, like their worst days, their worst symptoms and you just go into this like, oh my God, I’m never going to get better. This person, I thought they were better. They posted how great they were feeling and now they’re saying that they feel worse than they did before. It’s such a roller coaster and it’s a different journey for everybody and you really have to listen to your body and I put together a chart. So I was just charting out every single day and what I was eating and what I was doing, what my resting heart rate is, what my symptoms are and looking at this chart every day and say, okay, I’m getting better because without really visualizing it, it doesn’t really feel like you’re getting better. It feels like, well, I thought it was better, but today, I feel awful and I don’t remember what I felt like 7 days ago or 10 days ago.

Miller: Amy Watson, you mentioned the support group that you helped found. This was a long time ago, at this point. Are there people who are joining it now who got sick, I don’t know,

4 months ago, as opposed to 18 months ago?

Watson: Well, that’s a little tricky. The way that our long haul COVID fighter groups are set up is, they’re designed by cohort, by date of onset. So everyone that’s in our round one group became ill with COVID prior to April 1st and our round two group of people April 1st and later. And we honestly kind of put the brakes on in onboarding more people because it’s been very hard as someone who’s been struggling and suffering for so long to have folks coming in with these long COVID symptoms when we have worked so hard as advocates to get the word out, to encourage people to wear masks, to get vaccinated once the vaccines were available, to take social distancing and other precautions seriously and to have people sharing that they got sick at a party, at a concert, some other irresponsible, in my opinion, choice that they made.

Miller: Or got sick after having a vaccine availability for half a year or more, but they didn’t do it. In other words, you just, you don’t want to be in a support group with that person right now.

Watson: Exactly. And I, it’s not that, I have all the empathy and sympathy for people who are dealing with long COVID. But for me personally, to be the person responsible for these groups, I had to recognize that compassion fatigue is a thing and I absolutely have hit that wall pretty hard fairly recently. I needed to kind of take a little break and step back and do some self care for my own wellness. It’s easy to get lost in those stories, like Scott was saying, that the people who are posting or reaching out are often the people who are really truly in distress, who don’t have support networks in their real life offline and you can feel and hear the desperation that they’re facing and the hopelessness and that really does take a toll on your spirit. It’s like, wow, this is a lot. So it’s been tricky for me personally as an advocate and as the administrator of these groups to balance my own self care and recovery with the support and compassion that I have for all my thousands of long haulers who are members of our group. So it’s a tricky walk to walk. But thankfully there are so many more resources available post COVID clinics popping up here and there and you mentioned OHSU’s clinic and I did a little bit of consulting with them as they were getting that set up and the thing I told them and another post COVID program in town was you have to start with validations. You’re getting patients walking in the door who have been just completely ignored for long chunks of time, especially those of us who became ill in this first wave, which, something about that first wave really knocked people for a loop I think. And it’ll be interesting to see how that all susses out over time with research, but validation is the very most important thing. You have to believe patients. We could not in a million years make this stuff up. We didn’t all get together, so there’s no conspiracy to proclaim that we’re experiencing what we’re experiencing. COVID is real, these post viral issues that we’re dealing with are real and patients need to be seen and heard and believed.

McClellan: And I would like to reiterate that the groups that Amy runs, they are invaluable, especially when you’re first trying to find out information about the disease. It’s more of, you could become obsessed, like some people look at them every single day and they’re on there and just seeing these stories over and over and kind of reliving them and many of us who went through these really traumatic experiences, we have a degree of PTSD and it’s not good to relive other people’s stories every single day. So it’s good to at least step away and get information to connect with people and feel validated, but don’t look at it constantly. Just like pretty much anything with social media; it’s unhealthy to look at social media more than a little bit per day.

Watson: Absolutely agree.

Miller: Amy Watson and Scott McClellan, thanks very much for joining us and best of luck to both of you. Thank you.

McClellan: Thank you.

Watson: Thank you for having us.

Miller: Amy Watson and Scott McClellan are long COVID advocates and survivors. Amy Watson is the founder of the Long Haul COVID Fighters, a support group, also a preschool teacher. Scott McClellan is a game developer.

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