Understanding Exacerbations: Signs, Triggers, and Taking Action

[Arnelle Konde] (0:00 - 1:03)

Hello and welcome to the Lung Health Champion Podcast brought to you by the COPD Foundation. I'm your host Arnelle, and today we're talking about something every person living with COPD or any chronic lung condition should feel confident in recognizing. In exacerbation, also known as a flare-up.

If you live with COPD, you probably already know what your normal feels like, but what happens when your symptoms suddenly shift. In this episode, we'll break down what an exacerbation is, why catching an early matters, how to spot the warning signs, and what steps to take when symptoms start to change. And to help us discuss those topics, we're joined by two wonderful guests.

First, we have Dr. Stephanie Christensen, a pulmonologist who cares for patients with COPD and other chronic lung conditions. And we're also joined by Caroline Gaynor, who can speak to the experience of having an exacerbation. Welcome to you both, and thank you so much for being here.

Thanks for having us. Thank you.

[Dr. Stephanie Christenson] (1:04 - 1:05)

It's a really important topic.

[Arnelle Konde] (1:06 - 1:24)

Absolutely, absolutely. So let's start with the basics and define what an exacerbation is. Exacerbation is a flare-up or episode when your breathing is worse than usual and may continue to worsen without treatment.

So Dr. Christensen, how do you determine when your patient is having a flare-up or an exacerbation?

[Dr. Stephanie Christenson] (1:25 - 2:10)

Yeah, so oftentimes they come in because they're or get in touch because they're having symptoms that are more than their baseline. And their baseline can vary, right? So baseline can vary day to day, but we're talking about symptoms really that can't be controlled in the setting of their normal medications.

And sometimes that's in response to something like maybe they got a virus or I live in California and so we sometimes get wildfires and so that can be a trigger. So those things might trigger it or they may not know. But something has really caused that kind of, as you said, flare-up, that increase in symptoms that seems more than they can handle.

[Arnelle Konde] (2:11 - 2:15)

Yeah, and what about inflammation? Is that also a trigger too? Absolutely.

[Dr. Stephanie Christenson] (2:16 - 3:06)

So inflammation, when we think about exacerbations, one of the key features of exacerbations is that your lungs get inflamed. And so that might be, again, in the setting of, let's say, a virus or a bacteria where your body is responding, it's trying to respond to those infections and trying to get rid of them. But sometimes in patients with COPD because they already have some abnormal inflammation of baseline, it can kind of go out a whack.

So those airways are trying a little too hard, so they get a lot of inflammation. And that's why one of the key treatments for exacerbations is to really calm that inflammation down, usually with things like steroids. So yes, absolutely.

Inflammation is a big hallmark.

[Arnelle Konde] (3:06 - 3:10)

And how is a flare-up different than just having a bad day?

[Dr. Stephanie Christenson] (3:10 - 4:35)

I think that kind of depends on the patient. I think, unfortunately, exacerbations are, you know, they're subjective, meaning it can vary patient to patient. So one person can live with might be different than what another person can live with.

But usually we think of this as, you know, people kind of have that day-to-day variation where, yeah, maybe there are some days where they might have to take their rescues. And then I think we're going to be speaking to you and Taylor, like, Elbuterol or a different rescue and inhaler kind of more frequently. But they can kind of handle it on their own.

Whereas when we're talking about an exacerbation, usually it means, hey, they're actually taking their rescue and inhaler pretty frequently, or maybe actually rescue inhalers don't work for them. And they're just really feeling, hey, I'm way more shred of breath. I got way more cough than I usually do, and I really can't handle this on my own.

Some people might also think that they might have like an infection going on, like that they need antibiotics. So, they might feel like they've got something like a pneumonia. And some of those things can kind of cross over where they have an exacerbation and they have that infection there.

So, there can be different ways to experience it, but I think making sure that you kind of know, hey, I can't handle this thing on my own, or I really need more help than what my usual therapies are helping me with this.

[Arnelle Konde] (4:36 - 4:45)

And Caroline, in your experience, when you first started having flare-ups, did you know that if something was wrong right away or did you think it was just a bad day?

[Caroline Gainer] (4:46 - 5:30)

No, unfortunately, I didn't know that I was having a flare-up. And I'd always been one to try to tough it out. And so, I ended up in the hospital with a cleft slung and pneumonia.

So, yeah, then I'm sure someone in my care team told me about exacerbations and to watch out for them. But when you're first diagnosed and you're trying to find your way through this, a lot of things just kind of go, you know, like over your head or in one ear and out the other, however you want to say it, you don't retain it.

[Arnelle Konde] (5:30 - 5:36)

Right. And could you describe some of what you were feeling? Was it subtle changes?

Like, what were some of the symptoms you were feeling at the time?

[Caroline Gainer] (5:37 - 6:09)

I was more short of breath. I was coughing. I was expelling mucus, which I normally don't do.

But I just thought, well, you know, it's burning. I'm having a flare-up with allergies because right now I'm kind of going through the same thing. So, truthfully, until I got the COPD care plan, it was touch and go.

I had no idea, really, when I was having an exacerbation or when I wasn't.

[Arnelle Konde] (6:10 - 6:19)

Yeah. And in a bit, we're going to touch on like how we can kind of spot the warning signs early. And just want to talk about why is it important to spot those signs early?

[Caroline Gainer] (6:20 - 6:40)

Well, from a patient's point of view, it keeps it from going into something like pneumonia, which can affect the lungs in the long term, not just the short term. So we don't want a worsening of our condition. And if we don't catch it early, then that's likely to happen.

[Dr. Stephanie Christenson] (6:40 - 8:47)

And I think from a doctor's perspective, I think. So sometimes, you know, that COPD part where you're feeling all those symptoms, like some people who have lungs that don't have that disease, you know, when they get a thing like pneumonia, they respond OK, you know, like that, you know, it may not be that they might need an antibiotic, but a COPD patient also gets all that airway tightening and feels like, you know, really can't breathe, a lot more likely to get hospitalized.

So it's not even just the pneumonia part, which you can treat with antibiotics. It's that flare out part that you get those symptoms so much worse than potentially another person because you're also getting those symptoms of the airway is kind of shutting down. Just how you described like the reasoning behind it was so great because it's exactly the issues like, hey, if we don't catch it early, you could end up in the hospital.

And sometimes even when we do capture that things early, these things can happen. So it's, it doesn't mean that you did something wrong. But, you know, we're trying to avoid the hospital, but we're also, you know, that when we get exacerbations, those symptoms can last a really long time afterwards.

And you may not go back to baseline as quickly, but the faster we catch them, hopefully the faster we can get on top of what you were talking about that inflammation and decrease that so that we can kind of get you back closer to normal. But exacerbations can cause things they can also cause things like, you know, you can get so tipped over that we can cause things like heart attacks. Even with severe exacerbations, it does put you at increased risk for death, even in the coming years.

So I really say that, hey, we want to get on top of these because it's, it's similar to, you know, they're just as bad or they can be just as bad as things like heart attacks for pneumonia's. And so we really want to get on top of them because we don't want to have those, you know, we don't want you going to the hospital and we don't want to have those long term effects.

[Arnelle Konde] (8:48 - 8:55)

And you did touch on this a little bit about knowing your baseline symptoms. So how do you help your patients understand their normal baseline symptoms?

[Dr. Stephanie Christenson] (8:56 - 9:58)

It's a super good question because I think a lot of people don't always realize so what their, their baseline symptoms are because right, Carolyn, I don't know about you, but some of this is that you accommodate it over time and you maybe stop doing as much. And so some of your baseline symptoms might be that, Hey, you get short of breath and now you can't do as much as you used to be able to do. And so that is still a baseline symptom.

Some people have a lot of mucus. Some people don't like Carolyn. Didn't have a lot of mucus except when she's exacerbating, but some people do have a lot of mucus of baseline.

So it's kind of good to know like, Hey, where, where do you use it? Where, what can you deal with? But things like mucus, chronic cough, shortness of breath and how you deal with that shortness of breath, like how far can you walk before you have to stop?

Or how far can you go up hill or upstairs before you have to stop? And what does that baseline look like? So those are some things that I kind of discuss with patients about how they're feeling.

[Arnelle Konde] (9:58 - 10:04)

I'm Caroline from the patient perspective. What's worked for you and, you know, knowing your baseline and, you know, tracking your symptoms too.

[Caroline Gainer] (10:05 - 11:08)

If I start to cough up baby flam, then I know something's not quite right. Also fatigue has been a huge indicator for me. And so if I'm more tired than usual for two days in a row, we're going to have to seek some medical attention.

For other things like maybe, maybe this morning, my oxygen usually runs 98, maybe this morning it was 97. So maybe I would take a mucinics because I had that on hand and use the saline spray. And then if everything levels out, then we don't worry about it.

But if that continues, then we have to seek medical attention. So different things happen depending upon what's causing the exacerbation, I think.

[Arnelle Konde] (11:09 - 11:20)

Yeah, we touched on, you know, catching the warning signs early, right? So what are some of the common early warning signs of a flare up that people should watch for? Both of you can answer to that.

[Dr. Stephanie Christenson] (11:20 - 13:06)

Sounds like Carolyn, you have a couple of your own that I thought were exactly the right things that you watch your oxygen to see. Is it going lower than normal? 97 is not bad, but I think you know your body.

And so you're kind of seeing, hey, things are going lower. I usually tell people, you know, if you are watching your oxygen, you want to make sure you keep your oxygen monitor on for a good few minutes. Before, you know, the first, when you first put it on, right, Caroline, it goes all wonky because it's trying to read it.

And so just having a couple of dips there is fine because it's not registering. Okay, but if you're noticing, hey, usually I'm 98, but now I keep it on and I'm actually going into the 80s or maybe even low 90s. That's kind of where I'm like, hey, well, that's not normal for you.

Then maybe we want to think about that's one. So that's one thing you are also talking about increase cough and speed and production, which is super normal or super important. When we talk about our questionnaires that those are like our questionnaires when we're trying to figure out, hey, how are your symptoms doing cough and speed and production, just like you were talking about fatigue.

Date time, sleepiness, activity levels, like, can you do what you normally can do or isn't a lot less? Are you more short of breath? Those are all kind of big, big things that we watch out for.

But what are you thinking? Like, Caroline, when you notice your symptoms coming on, what do you notice in particular?

[Caroline Gainer] (13:07 - 14:19)

Well, one thing that I notice this sounds kind of strange is probably I may be filming one of your eyes, but I start biting my lip and my sleep. So if I wake up and my lip is sore, that's saying somehow in my sleep, I know that something's not quite right. But that has always been an indicator.

I knew that was an indicator before COPD. I knew that was an indicator that something was going wrong here. And something else I check is my sleeping heart rate.

When my sleeping heart rate elevates, that's a good indication that something's going to go wrong. And so sometimes I can figure out what it is and nothing happens, but most of the time, no, it isn't an indicator that something's going wrong. Also, if there's any change in the color of your sputum, you should be.

I mean, that's for me, that's a dead giveaway that there's some infection there and we need to take care of it for sure.

[Dr. Stephanie Christenson] (14:20 - 15:01)

And I kind of wonder if you're, you know, maybe you're getting some more stressed out in your sleep, but sometimes I think also when people get more short of breath when they're sleeping, so they're kind of waking up more, even if they're not completely waking up, just like you do with things like sleep apnea. So it might be that you're kind of opening your mouth more and your heart rate is speeding up because you're kind of waking up a little bit more. Maybe that's making you also bite your lip because you're, you're noticing that more in your sleep.

So I think that those are, so you think that it's weird, but I think it's actually maybe a very physiologically, and like it might really make a lot of sense that while you're noticing those things.

[Arnelle Konde] (15:02 - 15:09)

Yeah, that leads to my next question of Caroline, did anxiety or stress ever play a role during a flare up? Do you think?

[Caroline Gainer] (15:10 - 17:52)

Well, last year in March, I had to see a psychiatrist and get on some medication. And then I think was brought by the fact that when March is a hard time for me, my mother's birthday is in March at my baby's birthdays in March and they're no longer with us. So it's a hard time for me.

But I got a notification in the mail from the radiologist that until notified otherwise I had cancerous, I had a cancerous lesion in my lungs. And I just think that's a horrible way to tell somebody, you know, it's just anyhow. I was really upset.

I think I got it on a Saturday, so there was really nothing I could do until Monday. And actually when I first spoke to my pulmonologist, I don't know his voice and him telling me we were going to do something, you know, we were going to get something done quickly. We weren't going to fool around with all these tests and so forth.

We were going to do a biopsy and we were going to get it taken care of. Kind of brought me back, but I just kept sinking back into that until I did not want to do anything. And all I wanted to do was lay in bed.

And that's just totally unlike me. And one day I thought, you know, you ought to die in your sleep because you're not worth anything anymore. And the next morning I said, Oh, we need to do something here.

So thank God I was aware enough to know I had hit a bad point. And so at that point, I made an appointment. And I am still on medication and it's working and that's okay.

And I know this is a many people don't want to admit that they have mental health issues. They still has a stigma that I have had and I have written about it and I'm trying to be open about it. I'm 82 years old and I think that's something that I could do that's worthwhile is to tell people the truth about living with COPD and that's why I try to do.

[Arnelle Konde] (17:54 - 18:18)

Well, thank you for sharing that and your experience and your story is probably going to resonate with so many people. And I just want to say that I really appreciate you for sharing and being here speaking of knowing when to call your doctor. So when you're experiencing these flare-ups, so at what point do you know that I need to call, you know, a professional rather than handle these symptoms at home?

[Caroline Gainer] (18:18 - 18:31)

I know whenever there's change to the color of the mucus, whenever the oxygen keeps going down and whenever I'm tired more than two days in a row, those are my three things.

[Dr. Stephanie Christenson] (18:31 - 21:06)

I think those are great ways to know. I think all of those are exactly. And for some and for different people because I think, you know, people experience COPD differently.

So for different people, it might be different. And so kind of getting on top of that early, like I hear your story really resonates. I own, in fact, that's how I am as a patient too.

So I just want to deal with things on my own and let's let's, until you kind of realize, oh, I got gotten to, and you figured out where you got your trouble spot. And then you, you know, it's like hindsight's 5050. But if people can try to think about some of those things earlier or learn from Carolyn and others like, Hey, some of these are potential.

This thing's not normal for me. Should I be, you know, talking to my doctor about it or messaging them or, you know, just getting an opinion. I think that's so great.

You know, your point about your living with COPD and having having to go on medication. And first of all, it's like, that's amazing that you recognized it and that you got the assistance you needed and that you're talking about it. Because this is such a huge deal in COPD care.

It's like so common. So anxiety and depression are really common in COPD. And they're also, they can, the COPD and not being able to breathe can contribute to depression anxiety.

Like you can't do as much. You can't breathe. That's awful.

And then it can actually also like lead back to making your, it can make physical symptoms worse. So symptoms of shortness of breath can make those feelings worse so they can kind of circle back and forth on each other. So it's like such an important thing that I don't think all doctors recognize how much, how we call them comorbidities.

So like how often you have depression or anxiety in con, in conjunction with lung disease and that we should always be asking about it. But I don't think all doctors realize that. So advocating for yourself like you were doing, although it sounds like you've got a great doctor, but advocating for yourself as you were doing is just such an important thing.

I just being clogged for your experience and how great it was to hear for you to share that with us. Absolutely.

[Caroline Gainer] (21:06 - 21:26)

I like a saying that a friend sent to me it said, people with chronic illness don't pretend to be sick. They pretend to be well. And I think that's.

Yeah. I mean, you know, we do pretend like we're okay. It's a good point.

[Arnelle Konde] (21:26 - 21:36)

Thank you. And speaking of advocating for yourself. How do you feel you've managed your flare ups now versus when you first experienced them?

Have you noticed a change?

[Caroline Gainer] (21:38 - 21:54)

Absolutely. From having no clue whatsoever. Yeah, I think I'm pretty much on top of.

I'm pretty much on top of it now, I think. So I haven't been hospitalized for three years. So.

I think I think I was amazing.

[Arnelle Konde] (21:54 - 21:59)

I think I'm there. I'm giving you claps. Yes.

Yeah, we're both giving you claps.

[Dr. Stephanie Christenson] (22:01 - 22:27)

That's exactly what we're trying to do with our, you know, all of our prevention. All the inhalers that you take and other other things that we're. You know, that you are doing for yourself, like taking medications, making sure you're staying as active as you can, getting help with your.

Other comorbidities. So any other things like anxiety, depression. So that's amazing.

[Arnelle Konde] (22:28 - 22:36)

And we know that every flare up can be prevented, but how can patients reduce how often they have them or manage them as well as you do.

[Dr. Stephanie Christenson] (22:36 - 22:52)

Well, it sounds like you take some, I'm assuming we can take your inhaler. You take some medications to kind of stay on top of your symptoms. Is that right, Carolyn?

[Caroline Gainer] (22:52 - 23:22)

Yes, I have a, of course, I have an inhaler. I have a rescue inhaler, which I seldom use except for spring and fall allergy seasons. And then I make sure I have it with me because I may go into a coughing fit that I have to use that to interrupt.

And the absolute best, best tool in the world to me is the CRPD action plan. It's, it's, can't be beaten.

[Dr. Stephanie Christenson] (23:22 - 24:36)

And I think you're, you know, all those medications that you're taking kind of for your symptoms. One of the big ways that they are really meant to work is to prevent exacerbations. So that's one thing I tell patients to is, you know, you almost think of them like your blood pressure pills, like you don't feel like your blood pressure is high.

But you know, you have to take care of it because you don't want to get issues with your heart, right? So similar, like, so even if you feel like, hey, I got pretty good control. Do I really need to be taking these?

Well, to prevent these exacerbations and all those issues that having to go into the hospital, things like that, taking these medications. So the inhalers and any, your doctor has like, yes, your whole plan of these are the medications you should be taking. And a lot of that is for preventing exacerbations in addition to treating treating the symptoms.

Oh, and staying active as much as possible. So we talk about things like pulmonary rehabilitation. But even if you're not doing that, staying active because whole body health really helps with lung health, keeping those muscles around your lungs and your abdomen.

And that really, really helps keeping your lungs healthy.

[Arnelle Konde] (24:37 - 24:48)

And speaking of action plans, in your opinion, what should every person have in their action plan? What is one thing that you feel like everyone should have in that plan? Or multiple things.

[Caroline Gainer] (24:49 - 25:39)

In their action plan, they should have the triggers, anything that triggers their exacerbation. They should have what to do in case an exacerbation is starting. Like, for instance, I said that I had a little bit of speed on so I started taking me snacks.

That's one of my that's in my action. That's in my action plan. It says that, you know, that's the first, that's the first thing to do.

Then if that doesn't work, then we do something else. In other words, I think for each symptom, there's an action and that should be in your action plan. And of course, being aware of when we're in a red day, in other words, we're going to the hospital or a immediate care facility.

[Arnelle Konde] (25:40 - 25:43)

Dr. Christiansen, do you have anything to add to that?

[Dr. Stephanie Christenson] (25:44 - 26:48)

I mean, I thought that was a great action plan. That's probably, I think, yes, being aware of what triggers you. Or if you sometimes get triggered by things that you don't even realize.

What are those symptoms that? Hey, you know, what are, I know what maybe insulin symptoms are. What should I do if I hear if I feel this and who should I call or and when should I go in and seek care are always.

Pretty important pieces to the puzzle and like, not just should I message the doctor and wait a couple days for a response. Because people can and sometimes that's like, you know, some of our messaging, some systems are not meant for urgent action. So realizing kind of when can I, you know, when is it just like a question about something that's not an emergency versus when should I actually like make sure that I'm, you know, really seeking care that's, that can be where I can have things answered immediately.

That's all really important. So.

[Caroline Gainer] (26:48 - 27:26)

When I get alerts from my care team, I got an alert that said it's allergy season start the Allegra. And then I got a note from a nurse practitioner said, you know, these are. Text messages says, are you wearing that moist and mask because she always told me that she knows I do gardening and she tells me, be sure you get a clean.

And 95 mask moisten it before you go digging in that soil.

[Dr. Stephanie Christenson] (27:31 - 27:44)

When glad to hear they've got there on top of it with you to try to make sure you're staying healthy, which is great. And alerting to you when you need to add additional preventive measures, which I like.

[Arnelle Konde] (27:45 - 27:53)

Well, before we close, I would love one key takeaway from each of you. What is one thing you would want listeners to take away from this episode?

[Caroline Gainer] (27:54 - 28:11)

I think that most exacerbations can be avoided, provided that you pay attention to your symptoms and have a plan of action of what to do in case certain things happen.

[Dr. Stephanie Christenson] (28:11 - 29:08)

And I think that's a really good takeaway. I think that's a great takeaway knowing the signals and just realizing that, you know, exacerbations can have a lot of problems, you know, and not every exacerbation is the same. So, like Carolyn said, like now she's pretty much on top of it.

But even before you're, you know, like some might lead to hospitalization, some might not. And just because you normally have one that doesn't doesn't mean that you couldn't have one that's pretty severe. And that could lead to a lot of downstream really bad consequences, like never getting back to your baseline or not being able to do all the things you want to do.

And that's why we really want to work on figuring those things out early, like, you know, making sure we flag them early and get help early. But also that we stay on all of our preventive treatments that you have come you and your doctor have decided on together so that we make sure that we can try to avoid them if possible.

[Arnelle Konde] (29:09 - 29:52)

Well, thank you both for sharing your knowledge and experiences. I know the information that you all shared will help our listeners a lot. And if you are listening and you want to share your lung health story, please email us at share at COPDfoundation.org.

And your story could be featured on a future episode. I want to thank our guests, Dr. Christensen and Carolyn again for their amazing insight. We really appreciate you for being here.

And if this episode spoke to you or someone you know, we encourage you to look at all the resources that we link in the description, including educational tools and support programs available through the COPD Foundation. And thank you for listening to the Lung Health Champion.