Listening to Your Lungs: Recognizing COPD Warning Signs Early

Dave Sylvester (00:00):

Living the best you can with COPD is exercise if you can, as much as you can, and you don't have to do what I do. You can just do something. Anything is good. I believe exercise has saved my life. Eat right, take your meds as prescribed, stay on top of it. Or if you feel like you're getting worse, take action. Make that call.

Arnelle Konde (00:28):

Welcome to the Lung Health Champion Podcast by the COPD Foundation. I'm your host, Arnell. Today's episode is about the importance of listening to your lungs. Whether you are living with COPD or another chronic condition, you know your body often gives signals when something isn't right. The challenge is recognizing those signals and knowing when it's time to take action. In this episode, we'll hear from a pulmonologist who specializes in treating people with chronic lung conditions as well as someone living with COPD who understands firsthand how important it is to pay attention to those signs. But first, let's start with a story that shows what can happen when those signs are missed or ignored. So let's say you've been living with COPD or another chronic condition for years. You've worked hard to stay on your treatment plan, you check in with your care team, you've learned your routines, your medications, your rhythms.

(01:23):

And most days you feel like you're managing things pretty well, but then one day something feels a little different. Maybe you're a bit more short of breath walking to the kitchen. Maybe you're coughing more than usual. Maybe there's more mucus in your chest or you're feeling more tired than you normally would. It's not dramatic. It's not an emergency. It's just different. And if you're like many people living with COPD, you might tell yourself it's probably just a bad day or I'll see how I feel tomorrow. But sometimes those off days are your lungs trying to tell you something. And when small changes are brushed aside, they can build on each other. One hard day can turn into several. Symptoms can become harder to control. Recovery can take longer. And in some cases, what started as a subtle shift can lead to urgent care or even hospitalization.

(02:17):

Today we're talking about what it really means to listen to your lungs, how to know when your body is asking for support and why acting early can make a big difference in your health and quality of life. I am joined by two wonderful guests, Dr. Mailan Han, a professor of medicine in chief of the Division of Pulmonary and Critical Care at the University of Michigan Health and Dave, who is living with COPD and can speak to this topic personally. Thank you both for being here today.

Dr. MeiLan Han (02:48):

Great to be here.

Dave Sylvester (02:48):

Thanks for having us.

Arnelle Konde (02:50):

Yeah. So let's get started. Today's topic is about listening to your lungs and knowing your symptoms. I'll start with you, Dave. When you hear that, listening to your lungs and knowing your symptoms, what does that mean to you?

Dave Sylvester (03:02):

This is the learning experience. I've been treating my ... I was officially diagnosed a little more than eight years ago after a stint in the emergency room when I couldn't breathe, which this was symptoms. I've had COPD longer than that, but this was official. So since then, yet when I'm fine, I really don't have a lot. I'll get shortness of breath with exercise, which I do a lot of, but most of the time I can breathe okay. But when something starts to change, I've learned that I have to start paying attention. Usually it'll be a day or two before I saw, okay, maybe if it goes longer than a few days, I'll be calling my doctor. I mean, this happened just a little while back and just as a precaution, they put me on antibiotics and everything. I don't know how fast the antibiotics is supposed to work, but in this case it seemed like it worked within hours.

(04:05):

I felt better. And then after a couple of days, everything was back to normal. But the change that happened to me that made me call the doctor was my mucus started turning greenish. And I also have mild bronchiostasis, so I have to treat that too with airway clearance daily.

Arnelle Konde (04:23):

I like that you've emphasized that this is a learning experience because every day is different.

Dave Sylvester (04:28):

I have a feeling I'm going to be learning for the rest of my time.

Arnelle Konde (04:32):

Absolutely.

Dave Sylvester (04:32):

And that's okay.

Arnelle Konde (04:34):

Right. Dr. Han, so when you talk to your patients about knowing their baseline, what does that mean?

Dr. MeiLan Han (04:41):

For patients, it means two things. One, how short of breath are they? What are the same level of activities which day-to-day usually make them share breath like walking to the mailbox or grocery store? And then it's also just how junky they are, how much cough and phlegm they have. So it's helpful for me to know what baseline is so that we can talk about when we're not at baseline and whether the patient is experiencing more of a flare.

Dave Sylvester (05:11):

This last instance, this happened pretty much when the pollen started getting in the air this season and I've experienced this now every ... I never had allergies when I was younger before all this, but with the pollen in the ear, I mean that could have been all it was for me. I'm not sure, but just as a precaution, I make the call and maybe it was just the pollen and that's why I felt better in almost a really short amount of time. So I don't know. Like I said, learning.

Arnelle Konde (05:46):

Right, you're learning. And you just said just for precaution, you're going to make the call. But have you had any moments where you thought, I know something isn't right, I'm just going to wait it out and see what happens?

Dave Sylvester (05:57):

Yeah. It ended about eight years ago, I ended up in the hospital. I've learned from that lesson. So since that happened, I'm sure I have put off calling because it's like, oh, I don't want to call. Is this really that bad? But most of the time I make the call. And it's funny, in my case, for the first six or so years, I seem to get a lung infection at least a couple times a year. Now all of a sudden, I just wanted to had mild bronchiectasis about a year, maybe a year and a half, two years ago. Since I've been practicing that airway clearance, they haven't had any infections. So there you go. Anyway, that's how things are going for me.

Arnelle Konde (06:45):

And Dr. Han, have you ever had patients tell you that their symptoms were getting worse but they were waiting before they contacted you?

Dr. MeiLan Han (06:52):

Yeah, it's not uncommon that I'll get some ping in the portal. I'll touch base with the patient or chat with them when they get in and they'll say something like, "Oh, I knew I had that visit coming up." So I was just waiting until I saw you. They didn't want to bother me. So I think that's actually quite common.

Dave Sylvester (07:12):

I think a lot of patients, that's how I feel. It's like you don't want to bother. I don't want to bother them. It's just really serious. In my case, the serious ... I all of a sudden, this is eight years ago, all of a sudden it was late at night I had trouble exhaling. I didn't have any trouble breathing in. I was still smoking at this time and that was the last day I smoked. And that had happened before, but it went away and it wouldn't go away this night. So I ended up in the ER and I stayed a couple of nights and that has not happened again. I just started treating my COPD then.

Arnelle Konde (07:48):

And both of you brought up a very important point, which leads to the next segment talking about why people wait. So Dave, you had mentioned, "Oh, I don't want to bother them." Dr. Han, you had mentioned, "Oh, I knew I had an appointment coming up." What are some reasons I want to hear from the patient side and the personal perspective and also the clinical's perspective, what are some reasons, common reasons that you guys hear about people who delay care or say like, "Oh, I wanted to wait." What are some common reasons that people give?

Dave Sylvester (08:21):

Sometimes with me, it's in patients. If Dr. Khan here was my doctor and I call him and I'll get it right away, that drives me crazy. Sometimes it's a little difficult to get ahold of your healthcare pros and that can be frustrating. So that might cause somebody to wait because they just don't want to deal with it. And when really all you got to do is call or leave a message and I get called back.

Dr. MeiLan Han (08:48):

Yeah. I think from my perspective, I think as Dave indicated, it's a real challenge because most health systems now use an electronic portal for patients to message their physicians. But what patients probably don't know is that it doesn't actually come to my inbox immediately. It usually goes through a nursing triage system first. They'll deal with it if they can. And if not, they'll move it on to me, but it may take a day or two before it actually ends up in my inbox. I'll get an urgent page or something if it's really important and I haven't seen it, but doctors are not in their inbox all the time either. So I think if it's really important, actually patients need to call and try to flag the urgency of the message. But I think another message generally speaking is that if a patient feels like they are having a flare, that is an urgent issue because those can, if not treated immediately can lead to something more severe, which is why it's really good to talk to your clinician about what do I do the next time this happens and have something we call kind of an action plan.

(10:00):

If it's a little bit increase in symptoms, for instance, I might increase my inhaler use. If that's not helping, then I need to call. In some cases, I have patients that I know very, very well and sometimes I'll even give them medications to handle the exacerbation on their own and we kind of have an agreed plan on how they're going to do that. But just really depends on the individual patient. But the important part here, I think is having that discussion ahead of time of what are we going to do when?

Dave Sylvester (10:30):

Well, that's what I have antibiotics on at home on hand and prednisone. And of course it's funny, even when it starts, if I feel a difference and I feel like I'm hesitant to use them because I don't want to abuse them, but I have them and that's just in case and that result was because I couldn't get ahold of a doctor as quick as I wanted to. So we all agreed that I should have it on hand. And worst case scenario, if I take it and I didn't need it, I can stop taking it, but that's how it's worked out so far anyway. But I have them here, which really for me as a patient, that is a huge safety net. That is a huge relief just to know, okay, if I really feel like I'm getting sick, I got this stuff that will fix it and it's right here and then I can call and go through all that.

(11:21):

So I think that's important. I know sometimes it depends on the doctors, some don't want to do that, but so we had to have a little discussion and I won. So I have it on hand.

Arnelle Konde (11:37):

So we touched on this a little bit before about what happens when care is delayed. Dave, you had mentioned being in the hospital. I just want to ask, how did that impact you and how did that influence how you manage when symptoms get worse moving forward?

Dave Sylvester (11:55):

Well, thankfully symptoms never got that bad again because of course I started treating. It was funny because I had just started going to a pulmonologist and I was going through the whole thing, okay, I was going to quit smoking and all that. And then this happened. So I was already just at the beginning of starting to treat. I was only in there for two nights and I get in, I call my pulmonologist and then we just started. Those first few months, I had a difficult time. I never got as bad as I had to go back to the hospital, but it would start coming back and I had to be on prednisone off and on for a few months. And I haven't had to use prednisone only a couple of times. I had gotten pneumonia about a year, year and a half ago. But I mean, I'm on top of it.

(12:47):

I don't fool around. I treat it. I do what I'm supposed to do. When I exercise, I do what I'm supposed to do and it's paid off because I live a pretty good, healthy life. I mean, I have COPD. It has its limitations. I live on the third floor here. Sometimes coming up those two flights of stairs isn't so easy. Sometimes it's not so bad, but I have it. I know it every day I have it. But I mean, so far I can live pretty well with it.

Arnelle Konde (13:16):

I'm glad that you're emphasizing this. You do have COPD, but you live a good life and I'm happy that you were able to get back to your baseline after that incident. So Dr. Han, from the clinical perspective, you could talk a little bit about what happens physiologically when an exacerbation or worsening symptoms go untreated?

Dr. MeiLan Han (13:38):

Yeah. So I mean, there are multiple things that can cause a COPD exacerbation. For some patients it might be a viral infection, sometimes viral can become bacterial, it could start bacterial. Sometimes we don't really know. It could be allergies, environmental exposures, air pollution, et cetera, that can kind of trigger some excess inflammation. But the goal with each of these events is to try to get the inflammation kind of calmed down, kind of like putting out a fire before it gets too explosive because once it gets really explosive, it can be much, much harder, sort of the way we should be thinking about this. And that's why starting medications early in theory should help to contain that and help patients have a quicker and faster recovery.

Arnelle Konde (14:24):

So emphasizing that early action. So now let's talk about the solutions in building a plan. If someone is unsure of what to do when their symptoms are changing or worsening, where should they start? I'll start with you, Dave.

Dave Sylvester (14:38):

I have an action plan. Most of it is in my head. I don't actually have it written down because I just know it and I've already said what I do. If I feel those changes come and there's time to get alarm, I will start on the medication that I have on hand and I will call my doctor and then we'll take it from there. So I mean, my plan is to just be aware. It's a daily process. You just have to be aware. There's no fooling yourself that I don't have this and it's going to get better, but so far I've able to ... It hasn't gotten a lot worse in eight years anyway. It has gotten a little worse, but some of that's I'm older. I'm 74 years old, I'm going to lose lung function anyway. And then the bronchiasasis thing kicked in, so that's another little hurdle.

Arnelle Konde (15:31):

And you mentioned a couple of times having an action plan. What does that include?

Dave Sylvester (15:35):

Mine includes mostly just paying attention to what ... I don't have a specific thing that I wrote down, okay, this, this and this. This is what I do. If I start feeling something might be coming on, I'll call the doctor, I'll talk to them and just let them know what's going on and then we'll go from there. But that's pretty much all my plan consists of if I feel an infection coming on.

Arnelle Konde (16:03):

Dr. Han, do you have anything to add?

Dr. MeiLan Han (16:05):

Everything that Dave said really resonates with me and is very reminiscent of conversations that I've had with multiple patients. I think one of the things that patients need to be aware of is that exacerb patients are at a minimum a nuisance because they are going to make it harder to do the things that you want to do for whatever period of time, but they can also last an unpredictably long period of time. Sometimes some patients can take months in some cases for patients to really feel back to the way that they were. And there's also some evidence that really frequent exacerbations can actually be associated with more rapid lung function decline, which is definitely something we don't want. We've spent a lot of time today talking about how do we treat exacerbations. I would be remiss if I didn't mention that what we really want to do is also to avoid exacerbations in the first place.

(17:07):

And so if you are having them, this is where you really need to talk to your doctor about making sure you're on the right medication because we have a lot of both inhaled therapies as well as starting to roll out newer kind of biologic therapies that for certain patients can also help to reduce the frequency of these flare-ups. So we want to identify them, we want to get on them, we want to treat them immediately, but we also want to prevent them. And so that's something else the patients need to do is to have those conversation with their doctor about, am I really on the maximum preventative treatment that I could possibly be on so that I'm not having these episodes?

Dave Sylvester (17:41):

Well, no, one thing that I've had, this is another learning process. In my mind, an exacerbation is what happened to me eight years ago. I've had to learn that that's not the only kind there is. So in my mind, I'm thinking, all right, I had an exacerbation, I had to go to the hospital. All exacerbations, you don't end up in the hospital. They can be just like the doctor said, they may not be that serious or they may be moderate And I'm still learning. If I had a chest infection, say a few years ago, I didn't even call it an exacerbation because in my mind an exacerbation put me in a hospital and I'm wrong about that because an exacerbation, all it is is just a worsening of symptoms and that's what I've had to learn from. It took me time to actually realize that.

Arnelle Konde (18:32):

Yeah. So we've talked about making sure you have your plan, making sure you make the call if you feel like something isn't right. And we talked about the importance of talking to your healthcare provider. I just want to touch a litle bit on the caregiver perspective too for patients who are with their caregivers. How can they also help monitor these warning signs?

Dave Sylvester (18:54):

Well, I live alone, but I do have a significant other and she's very aware. In fact, her mom had COPD, so she's very aware of the COPD and she would pick up on things. She would pick up if I was getting worse. I'm a kind of host today. This doesn't happen every day. It just happens. So she could pick up on anything that might get worse and let me know.

Arnelle Konde (19:20):

Dr. Han, do you have anything to add?

Dr. MeiLan Han (19:22):

No, I mean, again, I think Dave's perspective is really very reminiscent of the conversations I've had with many patients over the years. I'm curious, Dave, are you also, for instance, in other things to help with your breathing, like a pulmonary rehabilitation program or anything else like that?

Dave Sylvester (19:45):

No, I never did that. Well, I brought it up when I first heard about it. When I joined the foundation, when I first heard it, I started hearing ... No, I'm in the gym.

Dr. MeiLan Han (19:57):

Oh, so you're really quite fit. Yeah.

Dave Sylvester (19:59):

I'm in the gym or out hiking almost most days of the week. Yeah, I have my own pulmonary rehab. Got

Dr. MeiLan Han (20:09):

It. Got it.

Dave Sylvester (20:09):

I mean, luckily for me, I've always exercised.

Dr. MeiLan Han (20:12):

It sounds like you're quite active. So for people out there that don't know what I'm talking about, pulmonary rehabilitation is a guided aerobic exercise program along with strength training, which is a lot of education in there too about things like how to take your meds and how to prevent exacerbations and having an action plan and nutrition and breathing exercises and all sorts of other good stuff. And so if you are new to the COPD world or just learning or wondering how you can better manage your disease, it is a really great resource and something to ask your doctor about to see if you might qualify. So just wanted to get that.

Dave Sylvester (20:49):

I believe exercise has saved my life, but then like I said, luckily I've always done it so I just didn't stop. I'm slower. I mean, when I say I'm out hiking, when the incline comes, takes me a while to get up there, but I'm out there. I'm doing it.

Arnelle Konde (21:07):

You do it. Love it. Well, before we wrap up, Dr. Hahn, I have one final question for you. When should a patient call the provider versus going to the ER or urgent care?

Dr. MeiLan Han (21:19):

Well, if you're suddenly just severely short of breath, you should just go to the ER. If you have a pulse oximeter at home and it's showing you're consistently below 90, or if you have oxygen that you've been frightened, you have to go up a lot to keep it over 90, those are all, I think, real severe worrying signs. Or if you feel like the pace at which the shortness of breath and symptoms is getting worse is feeling very rapid. That's another reason I think to go in. So I mean, it can be a litle bit difficult to gauge over the phone, but I think if you're even thinking about whether you need to go in, you probably have to go in.

Arnelle Konde (21:56):

Right. And Dave, given your experience, what advice would you give to someone who tends to wait it out or think like, "Oh, maybe I could deal with this tomorrow?"

Dave Sylvester (22:06):

Go way too long. You might end up in the hospital like I did. I mean, yeah, just pay attention to what's going on and if anything gets worse, you got to make a call. I'll go to the ER. I mean, if you're having real true difficulty breathing, go to urgent care or an emergency room. I mean, the night that I went, I needed to go there and thank God I haven't had to do it again.

Arnelle Konde (22:32):

Well, thank you both for your perspective. I do want to leave here with a couple of listener takeaways. So to someone who's listening to the podcast right now, what would you want them to take away from this episode?

Dave Sylvester (22:44):

I would want just pay attention to what's going on. Pay attention to your breathing. I mean, the keys to living, I think living the best you can with COPD is exercise if you can, as much as you can, and you don't have to do what I do. You can just do something. Anything is good. Eat right, take your meds as prescribed, get all your vaccinations and all that and stay on top of it. I mean, that would be my advice to anybody who has COPD to go. If you feel like you're getting worse, take action, make that call, or if it's bad enough, go to the ER.

Dr. MeiLan Han (23:27):

I think from my perspective, I guess there would probably be a couple of things. Number one, we didn't really spend much time talking about it today, but if you have CPD, you've never had a breathing test done, you need to make sure you ask for one because this will help you understand how severe your disease is, make sure you've got the right diagnosis. If you're still short of breath or having flare-ups despite whatever treatment your doctor's got you on, that should be a clue to talk to your doctor to see about whether anything else is available, whether your regimen could be upped. If you haven't been offered pulmonary rehabilitation, it's something to discuss. And then finally, as we've spent most of today talking about, you need to have a plan. The next time you go into see your doctor, have that conversation. If something bad happens, what am I supposed to do?

(24:11):

Obviously, if it's really severe, you go directly to the emergency room, but otherwise, how am I supposed to communicate with you? What do I do immediately? What do I do if I can't get ahold of you? Is there something I should be doing, et cetera. Just again, have that conversation with your doctor.

Arnelle Konde (24:25):

Absolutely. Thank you both. Is there anything else that we haven't touched on today that you would like to speak on?

Dr. MeiLan Han (24:31):

I think we all know that the COPD Foundation is a great place for more resources, but other places I can also point people to include there's an organization called GOLD that has some information about COPD. And then another good resource that I like to point people to is a website that doctors use a lot called UpToDate, but they have a section for patients. So those are, I think, both three great places to look for more information.

Dave Sylvester (24:59):

Most of what I've learned, I started learning by being part of COPD Foundation and I haven't heard of those, but I've checked out other things. I mean, you got to advocate for yourself too. I've had to do homework and like I said, most of what I've learned, I've learned from the foundation and the people in it. Patients and doctors alike. I mean, it's been great for me. I'm glad I just stumbled upon it and it's worked out well for me.

Arnelle Konde (25:35):

Yeah. Well, thank you both so much for sharing your stories and expertise. And now we're going to get into our segment called Air Mail where Every Breath has a story and we share yours. So today's Air Mail is from Carolyn Gaynor.

Dave Sylvester (25:49):

By Cal.

Arnelle Konde (25:51):

Yes.

Dave Sylvester (25:52):

Carolyn. She is the best.

Arnelle Konde (25:55):

She is. Carolyn is a retired teacher who taught for 38 years in the public school system in West Virginia. This tenure included time in the high school setting as well as the community college setting. At the time of her retirement, she had become aware of issues that prohibited her from retaining the challenging schedule that she had maintained for those 38 years. Mrs. Gaynor was the go- to person to chaperone events, sponsor clubs, coach cheering, and organize events for her sorority. In 2007, she retired from her high school position, but remained active with the community college setting. At that time, she also took on a new position as jewelry coordinator for a large store. In 2013, she found herself unable to breathe as she topped the stairs in her home and was rushed to the hospital by ambulance with a collapsed lung. She would suffer two more events of pneumothorax with chest tubes.

(26:54):

During this time, her physician suggested that she investigate the workings of the COPD Foundation. She was hooked and has since been involved in numerous projects related to COPD. Carolyn is also one of the foundation state captains and she was also a guest on episode two of the Lung Health Champion where we discuss exacerbations. So if you have not listened to that episode, please check it out. Thank you so much, Carolyn, for sharing your story. And if you are listening and want to share your lung health story, please email us at share@copdfoundation.org and your story might be featured on a future episode. Thank you again to our wonderful guest and if today's episode resonated with you or someone you know, we encourage you to look at the resources linked in the description, including education tools and support programs available through the COPD Foundation. I'm Arnell and thank you for listening to the Lung Health Champion.

Arnelle Konde (27:51):

Thanks for listening to Lung Health Champion. If today's episode helped you breathe a little easier, be sure to leave us a rating or review on Spotify or Apple Podcasts. It'll help the show reach other potential lung health champs. If you have any questions about today's episode or have suggestions for topics you'd like covered on the show, feel free to reach out to us via email at share@copdfoundation.org. For more insights on lung health, follow us on Instagram and Facebook by clicking the links in the show notes. For more info on what we do at the COPD Foundation, visit our website at copdfoundation.org. And don't forget to subscribe or follow the show on your favorite podcast app to make sure you never miss an episode as we continue to empower everyone to breathe easy. This podcast is for educational purposes only and is not a substitute for medical advice.

(28:46):

Always consult your healthcare provider with questions about your care.