From Fear to Action: Understanding Life After a COPD Diagnosis

[Barbara Yawn] (0:00 - 0:10)

Well, I think the one that is the most damaging is it's hopeless. There's nothing we can do. I think that is the most harmful misperception.

[Tina Moyer] (0:11 - 0:22)

I'm not going to die, you know, like you need life insurance, but you're not going to die. You're going to get through this. There's programs and different things that are going to help you get through and live good quality of life with CLP.

[Arnelle Konde] (0:30 - 2:00)

Welcome to the Lung Health Champion podcast. I'm your host, Arnelle Cone, the Education Coordinator at the Foundation. Today, we're talking about a moment where it can feel like the world is stopping, the initial diagnosis of COPD.

A diagnosis of a chronic lung condition can bring up a lot of questions and emotions. You might be wondering, what does this mean for my future? What happens next?

Where do I even start? In this episode, we'll hear from a primary care physician about what patients should understand when they're first diagnosed and what the priorities are in those early conversations. We'll also hear from someone living with COPD about what that experience felt like and what advice they would offer others just beginning this journey.

Whether you've just been diagnosed or caring for someone who has or want to better support your patients, this episode is for you. We're joined by two incredible guests to look at this from both sides of the conversation. First, we have Dr. Barbara Yan, a primary care physician and clinical researcher. And we are also joined by Tina Moyer, who has been living with COPD and can speak to exactly what those first steps felt like. Welcome to you both and thank you so much for being here. Thank you for having us.

What are your priorities in that first conversation?

[Barbara Yawn] (2:00 - 2:56)

Really to help the person understand what that diagnosis is, what it means, and what it doesn't mean because people have a lot of misconceptions and fears and we really want to clarify that. And I think we all know that when you give someone a new diagnosis of a chronic disease, they may not hear another word you say for the next five minutes because they just suddenly have all of these thoughts and pictures in their heads. So it's really important that we make the diagnosis and then we make sure that people understand what we said and frequently they have to come back multiple times before we really have a future understanding of what's going on and what it means.

[Arnelle Konde] (2:56 - 2:59)

And how do you go about explaining the diagnosis to them?

[Barbara Yawn] (3:00 - 4:56)

Well, I tell them this is a chronic lung disease that is treatable. It may not be curable, but it is treatable. We can change what happens when you have COPD.

It is usually caused by the inhalation of toxic things, and that may be several things. Yes, smoking is the most common, either primarily smoking or secondhand smoke, but there's other toxins. We also now know that children who were born prematurely may never get full lung development, and they may end up with COPD.

They may be more sensitive to toxins, and people who had a lot of infections early in their life, respiratory infections may end up with COPD. What this is is a condition that doesn't let you get the air out of your lungs effectively. So then there's not enough room to put it back in, and people sort of get confused by that.

They think, hmm, that's strange, but there's a way that you can tell what it feels like. If you take a big breath and blow it out, take another big breath, but only blow a little of it out, and then try to take three short breaths in. You'll understand what it means when you don't get your lungs empty, you can't get more oxygen or enough oxygen in, and it gets worse when you're doing activity because you want to breathe more rapidly, and you have even more trouble getting the air in.

So a chronic condition, yes, it usually progresses. We can try to help it progress more slowly by our treatment working together.

[Arnelle Konde] (4:57 - 5:02)

And when people first hear the diagnosis, what are some of the reactions you typically see?

[Barbara Yawn] (5:02 - 5:56)

They vary, but a lot of them are very negative thoughts. There's nothing we can do. This is hopeless.

This is a death sentence. My aunt had this, and she died. I'm going to be helpless.

I'm going to be dependent on others very rapidly. So a lot of misperceptions like that, and that it's all my fault. I smoked, so it's all my fault.

So you need to let that go. It is not something that you can sit and think about. It's my fault.

I just give up. What we need is then to move forward and decide, okay, what are we going to do about it?

[Arnelle Konde] (5:57 - 6:01)

Right. It's important to give that reassurance. We can manage this, right?

[Barbara Yawn] (6:02 - 6:02)

Together.

[Arnelle Konde] (6:03 - 6:15)

Together, exactly. And we're going to talk about that. The patient-provider relationship.

But I want to go back to you, Tina. I want to take you back to the time when you were told that you had COPD. What was going through your mind at the time?

[Tina Moyer] (6:17 - 6:29)

Fear. I had a lot of fear. I smoked.

So when I quit smoking, and they told me I had COPD, it was a lot of fear. That was my biggest thing, fear. Yeah.

[Barbara Yawn] (6:29 - 6:36)

Well, and I think if you stopped smoking, you probably also thought, this isn't fair. I stopped smoking. Exactly.

[Tina Moyer] (6:37 - 6:37)

Yeah.

[Barbara Yawn] (6:38 - 6:51)

Unfortunately, you know, if you've smoked for many years, you may have done the damage. And even when you stop, which is really important, it doesn't keep you from getting COPD. But it sure keeps it from getting worse.

[Tina Moyer] (6:51 - 7:14)

Right. It's loaded down. It's loaded down.

So, you know, you go through all these different kinds of emotions, and then once you accept it that you have COPD, then you learn how to go forward with it and advocate for yourself and start doing the best things that you can for yourself and your disease.

[Barbara Yawn] (7:14 - 7:44)

And I bet you didn't get there on the first visit right after you were told, did you? No. No.

No. Well, and I think that's a mistake we as healthcare professionals make. We assume, well, I explained it.

But you didn't hear. And if you told me something like that, I probably wouldn't hear for a while either. So it's that next visit and the one after that and the one after that.

Yep. It takes a little bit.

[Arnelle Konde] (7:44 - 7:46)

It takes a little bit to get it.

[Barbara Yawn] (7:46 - 7:47)

Yes.

[Arnelle Konde] (7:47 - 7:57)

So we had mentioned misconceptions before, Dr. Jan, what are some of the most common myths or misunderstandings about COPD that you try to address with your patients?

[Barbara Yawn] (7:58 - 9:24)

Well, I think the one that is the most damaging is it's hopeless. There's nothing we can do. It's going to get worse and I'm just going to die.

I can't breathe and that's it. And I think that is the most harmful misperception because no, I don't know how to cure it. None of us do.

But we do know how to minimize the impact on your quality of life. We can try to slow down progression, as Tina said, by stopping smoking and stopping other exposures. And the other big misperception is, well, you know, the treatment is going to be some medicine that the doctor gives me.

Well, that's only a little bit of the treatment. Yes, we have inhalers and some pills and now some injections and biologics that help. But it takes work on the part of the patient and their family.

This is one of those conditions where if you do not try to exercise, do activities, you don't maybe change your diet if you're underweight or overweight, those kinds of things are crucial to getting the maximum benefit from the treatments we have.

[Arnelle Konde] (9:25 - 9:38)

And speaking of, you know, family members and other people being supportive, Tina, this can be a very overwhelming and sometimes isolating period. I would like to know who was part of your support system after that visit.

[Tina Moyer] (9:38 - 10:07)

My biggest support was my son. My son quit smoking with me. So he was the go-to man, besides my husband.

But my biggest thing is I found a lot of help through the internet. I found people who had COPD and they were from around the world, from UK, from the states, you know, different states. But the biggest one is COPD foundation.

If it wasn't for them, I don't know where I would have been.

[Barbara Yawn] (10:07 - 11:03)

Well, and I want to really reemphasize that because we all know you can get on the internet and you can hear some really crazy things that are actually dangerous. Correct. Organizations like the COPD foundation are crucial because people talk to each other, people who living with a condition talk to each other, families talk to each other.

But we also sort of monitor those conversations and as healthcare professionals. Sometimes we step in and suggest that, well, maybe there's another way to look at it, to try to stop something that's just plain wrong. So really love that you use the COPD foundation community and hope other people will do that and that healthcare professionals will recommend that.

You the people, right?

[Arnelle Konde] (11:05 - 11:17)

It's very important to have that community and of people that are going through the same thing. I've observed the 360 social hour before and just seeing, you know, people, you know, just express their feelings and just talk to each other. It's very helpful.

[Tina Moyer] (11:18 - 11:57)

I remember when I first contacted the COPD foundation they had where you can actually call in. And what was on my mind is like Dr. Jan said, you know, you think the worst, you think death. And so I kept looking for life insurance because I was thinking, oh my goodness, you know, what's going to happen to me.

And I ended up calling the hotline. And I don't know, they just made a whole big difference about, I'm not going to die. You know, like you need life insurance, but you're not going to die.

You're going to get through this. There's programs and different things that are going to help you get through and live good quality of life with COPD.

[Barbara Yawn] (11:57 - 12:34)

Well, and you know, before I started working with the COPD foundation because I did work with them for several years, I thought that I understood the COPD from a healthcare professional perspective. And then I started talking to people living with it and realized I didn't have a clue about a whole bunch of things and how important the messages from those people to other people were. And that, yeah, I had messages too, but there are times my messages weren't actually as important as your messages to each other.

[Tina Moyer] (12:34 - 12:53)

Right. Well, as you, I don't know if you know, but I am also a state captain of Pennsylvania for the COPD foundation. So when you learn to advocate for yourself, you're not just advocating for yourself.

You're advocating for every fellow COPD here. So it's become my heart.

[Arnelle Konde] (12:54 - 13:16)

So that's right. That is amazing. And, you know, speaking of support, let's talk about how that relationship between a patient and their care team can shape the experience moving forward because it is a team effort, right?

So, Dr. Jan, from your point of view, how can patients and providers work together to make that early period after diagnosis feel less overwhelming?

[Barbara Yawn] (13:17 - 16:28)

Well, I think that we, as I said, as health care professionals need to realize it's going to take repeated opportunities to share information because the person that's been diagnosed is probably not going to hear the first second or maybe even the third time what I'm trying to say, and I may not be saying it in a way they could understand. Sometimes I end up using jargon when I shouldn't. And I don't understand what they're going through and what their concerns are.

So it's really important we try to be honest with each other and egos need to go way out of the, you know, they have no place here. We need to develop the kind of conversations that let me know what's really going on. What are your goals?

What are your concerns? What are your fears? I remember a lady that it was the third visit before she told me that she was sure she was going to die next week because her aunt went on oxygen and a week later she was dead.

Well, her aunt probably got diagnosed really, really, really late and maybe with an exacerbation in the hospital. But if she hadn't told me that, I wouldn't have understood where her fear was coming from. So I needed to understand that.

And I need to know that you as the people providing your own support, living with COPD, understand you've got to work at this too. I don't have a magic pill. I don't have a magic inhaler.

None of that is going to magically make everything work just fine. Hopefully I can make the symptom burden less. You can do more activity without symptom.

Hopefully I can help you have fewer flare ups, long attacks, exacerbations, whatever you want to call them. I'm going to try to keep you out of the hospital in the emergency room, but that's, you know, it takes working together and it takes time. We need to have appropriate expectations and I need to make sure I share those that this is not a miracle.

It's going to help. It may take a month before you see or feel any different. And you have to come back.

You have to come back and tell me because if it's not working, don't just get upset and decide, well, nobody's going to help me and don't show up again. Because unfortunately, I may not call you and say come back in. I should, but I may not.

So setting realistic expectations basically and developing a trusting communication where you can be honest with each other. And, you know, Tina can say to me, I have no idea what you just said. Could you speak English?

Or, you know, that isn't my experience or whatever. And I need to be able to say back, Tina, I got to have your help, please.

[Arnelle Konde] (16:29 - 16:33)

And Tina, from your experience, how have you worked together with your care team or your provider?

[Tina Moyer] (16:34 - 17:16)

Well, it took a lot. I had to go through a few doctors until I finally found a connection with a doctor who put me into pulmonary rehab and made me understand a little bit about COPD. And how Dr. Jan had said, you know, you have to do for yourself. You have to fight the disease is what you basically have to do. So if you exercise and eat right and just kind of even mentally, you have to get yourself in any place where you can accept you have COPD. But it's not the dead sentence.

You just have to keep fighting and keep going with good quality of life.

[Barbara Yawn] (17:16 - 18:29)

Well, I really liked what you said about the mental health aspect. Many people with COPD end up being depressed and anxious. I mean, if you can't breathe, you're going to be anxious and you get depressed because you say, okay, I'm going to try to do activity.

But every time you do it, get short of breath. Yes, you do. But if you just do a little bit increase a little bit, you don't stop every time you get short of breath.

You just kind of push through it a little bit. And I love what you said about exercise, but some people that mean they get this vision of, well, I'm telling them they have to go to the gym and look like, you know, those people who work out like crazy. That's not what we're saying.

You know, if you find it's hard to walk from your front door to the mailbox, that should be your first goal. We want you to be able to get to that mailbox and back without having to stop. Now, you might be a little short of breath, but I don't want you to be so short of breath to stop.

If you can't walk up a flight of stairs, can you walk up half the flight of stairs?

[Tina Moyer] (18:29 - 18:29)

Right.

[Barbara Yawn] (18:30 - 18:31)

Can we push it then three quarters?

[Tina Moyer] (18:32 - 18:32)

Right.

[Barbara Yawn] (18:33 - 18:41)

So, you know, we have to be realistic. And I love that you did pulmonary rehab. Congratulations.

That's great.

[Tina Moyer] (18:41 - 19:08)

Thank you. I mean, that kind of saved my life. Because you know, you have all these different kinds of emotions.

And it's like you said, like I was getting short of breath and it's like, I'm not going to do that. It's given me shorter breath. But when you go through pulmonary rehab, it's, it's a whole different thing.

They want you to accelerate and get yourself short of breath. And you know what? I got short of breath and I was still here.

Well, that's the, you know, the biggest story.

[Barbara Yawn] (19:08 - 19:17)

And I bet they did educational classes. And they showed you how to use your inhalers and made sure you knew what you were doing.

[Tina Moyer] (19:17 - 19:25)

I had the breathing techniques and yep, yep. I had a really good, good pulmonary rehab therapist. It was really great.

It's great.

[Barbara Yawn] (19:25 - 19:26)

That's good.

[Arnelle Konde] (19:27 - 19:42)

So this next question is for the both of you. Where can people with COPD and other health concerns advocate for themselves when they're talking to their doctor or another advanced practice provider? Like any tips that you have for people who may have trouble with that?

[Barbara Yawn] (19:42 - 21:00)

Well, I think you have to, as you know, Tina said, you have to find someone you're comfortable with. And you know, it's really okay to ask, do you take care of a lot of people with COPD? Because there may be both primary care physicians, but maybe especially people with a little less training and education.

They just haven't had that experience. And they may not be as up to date. And then you may need to say, do you think that maybe I should be referred to a pulmonologist or somebody else with more expertise?

And, you know, if you ask them, should I go to pulmonary rehab? And they say, no, or I don't know what it's about, go find somebody else because that's a crucial thing. And the other thing is that they haven't done a breathing test like spirometry or pulmonary function test, please ask for that.

And if they don't do that or whatever, again, find somebody else or ask for a referral.

[Tina Moyer] (21:00 - 21:28)

I agree with Dr. Young. Having your pulmonary doctor and primary doctor and whatever other doctors you have, if they can work together and take care of you as one, then you got good care. And that's what I have in my life.

So, you know, that's one of my biggest things. And write down the questions. If you have questions, write them down.

And, you know, just keep asking until you get the answers.

[Barbara Yawn] (21:28 - 21:41)

I love that you write your questions down because, I mean, I go in for my health care check and I don't have a chronic disease. And I forget half the questions if I don't write them down.

[Tina Moyer] (21:41 - 22:00)

I mean, you know, I haven't like right on my little phone. I have like notes and stuff. So I put my little notes down and whatever doctor I have to go to.

It's like, okay, well, this is what I have to, you know, I want to ask you this or are we going to do this next and you have to advocate for yourself. You just have to. You have to with any disease.

[Barbara Yawn] (22:01 - 23:24)

I think that's where, again, the COPD foundation and the education you can get there, they will tell you about things. What is pulmonary rehab if you don't know? So you can find out what is a spirometry test?

How often should I have that? You know, what other things are there? What are the medicines available?

You know, I'm doing all the inhalers and they aren't working. If I'm having trouble stopping smoking and then you can go to your health care professional and say, hey, I read about this and what do you think? And, you know, again, this is where ego goes out the window.

If I'm all upset because you're selling me things, I think you're saying, well, you aren't doing what you should. That's not my attitude. That's not what it should be.

It's not easy always, but that's not my attitude, I hope. I think any time the patient comes in with those kinds of things, especially if they say, you know, I found this on the COPD foundation and I listened to their education. That really gives me comfort because I know that's a reliable source.

It's not like somebody's TikTok, YouTube, whatever thing that could be really frightening.

[Arnelle Konde] (23:24 - 23:45)

And moving from diagnosis to management, like we said before, is a team effort. And we touched on this a little bit, but who else plays a key role after that? I know you had mentioned pulmonary rehab and different resources like the COPD foundation, but there's also other people in your care team too.

So who else has been a key player in your journey, Tina?

[Tina Moyer] (23:45 - 24:12)

My family and my animals. I mean, the animals are great support, but my family, they have stuck by me from day one. You know, because with COPD, you get other diseases that you have to contend with and I'm dealing with that now.

So it's like they have been my rock. They're the biggest support that I've ever had.

[Barbara Yawn] (24:12 - 25:51)

Well, and some of the other people that, you know, not everybody needs all of them, but you know, mental health clinicians, counselors. Because, you know, some people's depression really does need some talk therapy. Not always medicines, talk therapy really can make a huge difference for you to say all the things you won't tell anybody else.

You can tell them and they can help. So that's important. As you said, nurses, there are lots of nurses like the pulmonary rehab nurses that are important.

Pharmacists can be very important because maybe they teach you inhaler technique, but even if they don't, they're there for all the immunizations. You need to get all of those immunizations, RSV, COVID, pneumonia, shingles, influenza, how could I forget that one? You know, and they can help with all those things.

They can help explain your medicine if you don't understand too. And then as you said, sometimes we have to have a cardiologist because there's heart problems too. And maybe there's problems with diabetes.

Maybe you need, you know, an endocrinologist, diabetologist, whatever you'd like to call them. And they all need to work together whenever possible because the worst thing is if I tell you one thing and the pulmonologist tells you something different. That is so confusing to everybody.

[Arnelle Konde] (25:51 - 25:58)

So it's also important for the people who are in your care seem to know like what's going on right and be on the same page too. Yeah.

[Barbara Yawn] (25:59 - 26:35)

Well, and that's one of the things that the electronic medical record health record can help with. If you happen to share one, they can maybe read the quick summary at the end so they know, you know, what was recommended and what you, you know, you and the pulmonologists have agreed to do. So then I know if not, sometimes we have to send letters back and forth or emails or there's this thing called the telephone that still works too.

You know, a quick call once in a while can make a huge difference.

[Arnelle Konde] (26:36 - 26:42)

Well, Dr. Jan, are there any resources that you wish were utilized more often in early COPD care?

[Barbara Yawn] (26:42 - 28:10)

Well, definitely the breathing test, the spirometry, because we know that in primary care, as many as half of patients get the diagnosis without getting the breathing test, the spirometry of pulmonary function that you need to confirm it. So that's one thing. Another is certainly pulmonary rehab.

You know, about 2% of people with COPD in primary care get pulmonary rehab. That's horrible. Pulmonary rehab is one of the best treatments, and it has the lowest side effect rate of any other treatment.

And then the other thing are action plans. You know, people kind of know about action plans and asthma, but not so often in COPD and Tina, maybe you can tell us in a second if you have one. But I think those are so important because they tell you, okay, if this is happening, this is what you need to do.

If this is happening, this is what you need to do. So if it's a good day, yeah, take your usual medicine. If it's a little bit of a problem, maybe you take your quick reliever medicine.

If it's really a problem, you know, can't even speak in a full sentence, you call 911. I mean, it really helps, I think. And it also gives people permission to do those things.

[Tina Moyer] (28:11 - 29:22)

Right. See, now my action plan, and it's kind of ironic, I was doing very, very well. And then if I'd have a flare up or something, it would be like, okay, now that's just a flare up.

That's going to go away. But I learned you don't wait. Like I don't wait.

So if I get a flare up, or if I feel like a little wheezy in my chest, I go to the doctor. Or, you know, I message my doctor. That's the big thing too.

Like with me, I'm able to message all my doctors. And if I can't get something from the primary, then the pulmonary gets involved. If I can't get from the pulmonary, then it goes back to the primary.

So that's kind of how I've been doing it. I even actually, when I got really, really sick. In my mind, I knew I couldn't just do my inhalers or, you know, any types of medications that I needed at that particular time.

So you learn how to put things in action. And you know what's, you know, the higher level that you have to contact your doctor and what's the lower level. So that's kind of how I do it.

[Barbara Yawn] (29:23 - 29:58)

And that's so crucial because we can't stop all exacerbations from progressing. But we can't stop a lot of them. And if you act quickly as you're doing, you can make a huge difference.

Because you don't want to have to go to the ER. You don't want to have to go to the hospital. And we don't want you to have to because we know that increases your risk for future problems and for decline in lung function and all kinds of things.

So that's why what you just said is crucial.

[Arnelle Konde] (29:59 - 30:11)

Now, I want to talk about, after you're diagnosed and going through all the motions with that, Tina, looking back, are there any questions that you wish you would have asked or things you wish you would have known before? I wish I didn't smoke.

[Tina Moyer] (30:13 - 30:46)

That's one of them. I wish I never would have done that habit. I think my biggest one, am I going to die at a young age?

And then the second part was oxygen. That was my biggest fear. Like, I don't want to be on oxygen.

I don't want that to happen to me. Well, guess what? It happened to me.

I take oxygen at night. And that was another bump in the road. Like you have to, you have to, okay, well, I have to do this oxygen.

You know, it's going to help me. And do I like doing it? No, I'm not really.

[Barbara Yawn] (30:46 - 31:11)

But that's where, you know, your colleagues at the COPD Foundation and then that circle can help because, yes, I hear that too. People are very frightened of oxygen and they think it means they're going to have to sit in the house. They can't do anything that they got to lug this huge tank around all kinds of things.

And those are just not all true for everybody.

[Tina Moyer] (31:11 - 31:30)

Exactly. I mean, that's, you know, and mine's only at night. Mine's the nocturnal kind.

So now my drive is, I'm not going to get it during the day. I'm going to make sure that I'm going to keep fighting and keep going and doing the best I can to keep it from just staying right at night time.

[Barbara Yawn] (31:31 - 32:05)

Well, you know, five, ten years from now, it may have to be during the day too. But again, I'm so impressed. You know, you go out to the mall or something and there's people out there with their oxygen concentrators with their oxygen tanks.

And I have to say, they probably think I'm pushing or something, but I always go up to them and say, I'm so glad to see you're out shopping. Keep up the good work. And they look at me kind of funny like, who the heck are they?

[Arnelle Konde] (32:06 - 32:08)

I think it's so important.

[Tina Moyer] (32:09 - 32:09)

Yeah.

[Arnelle Konde] (32:09 - 32:17)

Yeah, dispel the myth, right? It dispelled the myth that, you know, this is an automatic death sentence or I can't do the things that I enjoy. Right.

Exactly.

[Barbara Yawn] (32:18 - 32:41)

Yep. But I also want to comment on your wish you didn't smoke. Well, there are a whole bunch of people that need to hear that message from you.

So I hope you also, if you ever have the opportunity to go to a school or something, you could go and tell them, hey, this is one of the reasons you don't want to do this.

[Tina Moyer] (32:41 - 33:01)

Well, I do have that opportunity. I'm still in the workforce part time and I work at a grocery store. And so every chance I get, I say, well, they're no good for you.

You know that, right? You know, and it just kind of look at me and it's like, well, when you're my age and you get COPD, you're going to think twice.

[Barbara Yawn] (33:02 - 33:38)

Well, and I think you tell them that second sentence too. I think that's good. I, you know, they may not want to hear it, but maybe if they keep hearing it from a lot of people.

And the other thing is, you know, congratulations for stopping and you and your son topping together. That's great. Well, it makes a difference and it can be done.

I, you know, having never smoked. I don't understand how hard it is, but I've seen many, many people work and work and work at it.

[Tina Moyer] (33:38 - 34:16)

And I'm so impressed when you do keep trying till you do it. It's a bad addiction. It really is.

It's a bad addiction. If I didn't have him, I don't know if I would have done it because see, I quit smoking and then I got my diagnosis of COPD. And it was like, are you kidding me?

You know what I mean? It's, it really, it really just takes you into a whole different kind of mindset. Like, it's, it's hard to even explain.

So, I mean, if, if you could quit, you quit with somebody. If not, then you do it on your, you're on your own. And it's basically, it's a mindset.

You got to have the mindset to do it.

[Barbara Yawn] (34:17 - 34:43)

Well, and what you said about you get the diagnosis after you quit, then I've seen several people say, why don't I just give up and start again. Oh, yeah. I, I ran into people like that as well.

Yep. And I understand. I mean, you're discouraged.

But you really are doing something so good, not just for your lungs. It's also really good for your heart to start smoking. Yep.

Exactly.

[Arnelle Konde] (34:43 - 34:53)

Looking back, what has made the biggest difference in helping you feel more confident in managing your COPD? I know you mentioned your son that you guys kind of, you guys quit together. What else has helped you?

[Tina Moyer] (34:53 - 35:26)

My pulmonary rehab, staying in the workforce, as, as much as I have, like, I have multiple conditions. So it's been very difficult. So staying in the workforce because you're always on to go.

You're always on your feet. You're always, I'm, I'm interacting with people. And the biggest thing for me is that somehow my advocacy gets in the middle there, too, because come November, we do world COPD day at the grocery store.

That's kind of how it's been going for me. That's kind of what I do.

[Barbara Yawn] (35:27 - 36:02)

I am at least mostly retired, too. And I work at a food shelf. And one of the other women who volunteers at the food shelf just sort of in passing.

She didn't know that I was a physician at all. And she said, yeah, you know, some days my COPD is acting up a little bit. And it was like, oh my goodness, I would have never known you had COPD because, you know, you're active.

You're doing so well. I said, you know, if you're comfortable, you ought to tell other people so they can see how well you can do with COPD.

[Tina Moyer] (36:02 - 36:28)

Right. And even if you do have your bad moments, like, I have some bad moments because I also have a heart condition. So it's like now I'm COPD and heart condition hand in hand, but you're able to show people that you're doing it.

And, you know, you might have a bad day and you're not breathing too well. And the next day maybe it might be the best day. It's a good day.

There's always the good days and the bad days.

[Arnelle Konde] (36:29 - 36:36)

And Dr. Jan, what advice would you give another healthcare practitioner and supporting their patients when they're first diagnosed and beyond?

[Barbara Yawn] (36:37 - 38:17)

Well, I think first being honest with yourself and are you comfortable with COPD? Do you need to learn more about COPD and managing COPD? Do you think it's hopeless?

I mean, I talk to a lot of primary care physicians do a lot of education. And a lot of them tell me, it's just hopeless. Why do I even, you know, there's just nothing I can give the patient?

Well, there aren't any miracles. But again, I think we need to tell ourselves as healthcare professionals, this is a slow, incremental improvement. And we also can do many things, but we have to do it working together.

And, of course, in primary care, I would say, please don't make the diagnosis without the lung function tests. You are going to be wrong about 30% of the time, and then you are not treating the right disease, and that's not a good idea. So please do that.

And also find out about pulmonary rehab. One of the things pulmonary rehab can help primary care is I don't have time in my practice to do all the education that needs to be done. But in pulmonary rehab, they have many educational sessions, and they can make up for the education I don't have time to do.

So it is a wonderful addition to healthcare, and it does things I just can't do.

[Arnelle Konde] (38:17 - 38:27)

Before we close, I would love one final takeaway from each of you. What is one message you would give to someone who is newly diagnosed?

[Tina Moyer] (38:28 - 39:15)

I would have to say, make sure that you have that right doctor, get into pulmonary rehab, and contact the COPD Foundation. And then my next step would be, if you don't have support at home, find support elsewhere, whether it be a friend, a clergyman, a therapist, somebody that you can actually tell your inner feelings to, because we need people that listen to us. They may not understand how it feels for us to have COPD, but if they are empathetic toward us and listen to us, I think that even helps us as well.

And always, always fight for good quality of life. That's what I would say.

[Barbara Yawn] (39:16 - 40:04)

And I think that I would tell them, please just take a breath and listen and come back and listen again. Learn as much about COPD as you can, and realize you are a crucial part of the healthcare team, and you've got to advocate for yourself. So you need to learn as much as you can about COPD, and I agree the COPD Foundation is a great place to do that, and to talk to other people with the same condition.

So you have a circle of people who care about you and also understand and can help give you feedback. Incredible.

[Arnelle Konde] (40:05 - 42:46)

Thank you both for your amazing insight. I know that the advice is going to help people on both sides of the conversation. Well, now it's time to hear from our community.

We have a new segment called Airmail, where every breath has a story and we share yours. Today, we're going to hear from Miranda, who is a COPD Foundation advocate. So this is her airmail letter.

This is my COPD Foundation journey. My why is my family. Family first over everything.

In 2020, life as we knew it changed dramatically. We were hit with the pandemic, and many Americans, including my father, didn't want to step foot in a hospital because he truly believed he might never come out. In 2021, he was diagnosed with COPD in a very unconventional way.

One night, in the middle of the night, I got a phone call from my mom saying, you've got to get up here. Your dad passed out on the kitchen floor. I don't know what's going on.

We didn't know if he had a heart attack, a stroke, diabetes. We had no idea. Through a series of interventions and numerous ER visits, he was eventually diagnosed with COPD.

He was sent home on nebulized therapy and many medications, including steroids. As his only daughter and one of his caregivers alongside my mom, I can honestly say that if it hadn't been for our local pharmacist teaching us how to properly use the nebulizer and manage everything, I don't know if my dad would have received the therapy he needed at that time. In August of 2021, my dad was diagnosed with stage 4 throat cancer.

Like many COPD patients, underlying health conditions don't always come to light until more testing and diagnostic imaging is done. That was the case for my dad. In the fall of 2021, he underwent a total laryngectomy in Tampa, Florida.

He was a fighter until the very end. I'm incredibly thankful I had two additional years with him. Those were some of the best moments of my life.

So my why for working with the foundation is for patients, especially those in rural communities who don't have direct access to quality health care like we experienced. Thank you to all of our partners and supporters for making a difference. We are reaching more of the missing millions facing COPD and chronic lung disease every single day.

[Barbara Yawn] (42:47 - 43:19)

Well, and I want to really thank her for mentioning the other testing because we hadn't mentioned the lung cancer screening that most smokers should do. It can help further the clarify the COPD and emphysema diagnosis when you get the lung cancer screening and it may find that lung cancer long before the stage four kinds of cancers that they had to deal with. That must have been a hard story to share.

[Arnelle Konde] (43:20 - 43:58)

Well, thank you so much, Miranda for sharing your story. And if you want to share your lung health story, please email us at share at COPDfoundation.org and your story might be featured on a future episode. Again, I want to thank our amazing guests, Dr. Barbara Jan and Tina Moyer. We really appreciate you for being here and we really enjoyed this conversation. If this episode resonates with you or someone you know, we encourage you to look at the resources linked in the description, including educational tools and support programs available through the COPD Foundation. I'm Arnelle and thank you for listening to the Lung Health Champion podcast.

[V/O] (44:01 - 44:59)

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 at 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. Always consult your health care provider with questions about your care.