Chronic obstructive pulmonary disease, or COPD, affects millions of people around the world-- and millions more may be undiagnosed. So what exactly is COPD? In this episode, you'll get to know your lungs better, learn about symptoms and causes, risk factors, and more. And you'll meet John and Jan, who share their experiences living with and managing the disease.
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Disclaimer: The content provided in this podcast is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified healthcare provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have heard on this podcast. Reliance on any information provided by this podcast or its guests is solely at your own risk.
[00:00:03] Jan Cotton: I was just devastated. I didn't know what to do with that diagnosis, a diagnosis of COPD. What did that mean?
[00:00:10] Micaela Arneson: Receiving a diagnosis of chronic obstructive pulmonary disease, or COPD, can be overwhelming, stressful, scary, and leave you and your loved ones with even more questions than answers.
[00:00:22] John Linnell: Maybe I was in denial or maybe I thought, okay, I'm getting an inhaler because I didn't quit smoking at the time.
[00:00:33] Micaela Arneson: This series, The COPD Podcast will answer many of those questions. And we'll bring you stories from people who have COPD and are getting on with their lives.
[00:00:42] Dr. David Mannino: I've had many patients with very severe lung function impairment that I've been following for 15 or 20 years.
[00:00:50] Micaela Arneson: In this first episode, we'll cover the basics, what COPD is, how it's diagnosed and what causes it. And at the end of this and every episode, we'll share resources for those looking for more information and help. So if you've been diagnosed with COPD, or you know someone who has, think of this podcast series as a companion guide on your journey with COPD. I'm your host, Michaela Arneson.
[00:01:15] John Linnell: When you have COPD, it's not the end of the book, it's a new chapter. It's your story. You get to choose how it goes. So stay there, don't be disheartened, it's not the end.
[00:01:31] Micaela Arneson: COPD is not an uncommon disease.
[00:01:34] Dr. David Mannino: In the United States, around 16 million people have been diagnosed with COPD.
[00:01:40] Micaela Arneson: That's Dr. David Mannino.
[00:01:42] Dr. David Mannino: I'm a pulmonary physician based in Lexington, Kentucky. I am one of the co-founders of the COPD Foundation.
[00:01:51] Micaela Arneson: A pulmonary physician, also known as a pulmonologist, is a doctor who specializes in the lungs.
While we'll be speaking to health professionals like Dr. Mannino, this show is not a substitute for formal medical diagnosis or treatment. So if you have any questions or concerns about a medical condition, don't rely on what you hear on this show. Talk to a qualified healthcare provider.
So about 16 million people in the US have COPD, but there are millions more who have symptoms and have not yet been formally diagnosed.
[00:02:21] Dr. David Mannino: A COPD is an umbrella term for a collection of diseases. The disease components include chronic bronchitis, emphysema, and a subset of patients with asthma.
[00:02:33] Micaela Arneson: We'll come back to these disease types in a minute. A helpful way to think about COPD is to imagine how the lungs function normally.
[00:02:40] Mike Hess: It's good air in and bad air out at its most basic level.
[00:02:44] Micaela Arneson: Mike Hess is a respiratory therapist. Respiratory therapists work alongside doctors and nurses to help people with respiratory illnesses improve their breathing.
[00:02:53] Mike Hess: It's kind of like starting to inflate an old latex balloon. So you draw that air in, it stays there for a moment, and it goes into these little air sacs called alveoli that have very tiny blood vessels around them. The oxygen transfers into the blood, your carbon dioxide transfers out of the blood and then your muscles relax. And just like letting go of a latex balloon, everything goes right back out.
[00:03:15] John Linnell: But if it's an old balloon, it's lost its elasticity. It's not able to get the air out. That's what COPD is.
[00:03:25] Micaela Arneson: That's John Linnell, who has had COPD for about 16 years. So how can the lungs become, to use John's words, like an old balloon that's lost its elasticity? Let's go back to the types of COPD that Dr. Mannino mentioned a minute ago, starting with chronic bronchitis.
[00:03:41] Dr. David Mannino: Patients who produce a lot of phlegm and mucus that they cough up and their airways are thickening.
[00:03:49] Micaela Arneson: Then there's emphysema.
[00:03:51] Dr. David Mannino: Emphysema is destruction of the lungs. So these are basically people who have holes in the lungs, and sometimes they even look like Swiss cheese.
[00:03:59] Micaela Arneson: And like Dr. Mannino said, some people with COPD also have asthma, which is when the airways, which are the tubes that bring air into the lungs, get inflamed and cause wheezing. Regardless of the issue, if the lungs can't bring in enough oxygen or expel enough carbon dioxide that has negative consequences for the rest of the body, as you can probably imagine.
So COPD is serious, but it's often the case that people live with it for a while, in some cases years before they're officially diagnosed. John's diagnosis came in 2005 after he started to notice a change in his energy.
[00:04:33] John Linnell: I just felt run down. And it was taking me longer to get going. If I had to be somewhere at 7:00, 7:30, I'd have to get up at 5:00 because it took me that long to have my coffee, to bathe and then to get dressed and to get to where I had to go.
[00:04:53] Micaela Arneson: This general feeling of tiredness is pretty common among people with COPD, but fatigue and other frequent symptoms are precisely why COPD can be difficult to recognize at first.
[00:05:03] Mike Hess: For better or for worse, they can be kind of what we call nonspecific. Cough, shortness of breath, trouble sleeping, all of these things don't necessarily point directly at COPD and that's actually kind of a problem in the COPD world because a lot of people think they're just getting older or they're a little out of shape.
[00:05:20] John Linnell: I remarked to the doctor, you know, doc, it really sucks getting old. Well, he looked at me and said, you're 49. That's hardly old, let's talk about this.
[00:05:32] Micaela Arneson: The most common symptom is shortness of breath known as dyspnea, especially when you're exerting yourself. But shortness of breath doesn't necessarily mean you have COPD. That's where a specialist comes in.
[00:05:42] John Linnell: He said, due to your smoking history, I think we need to pull an x-ray. So they took an x-ray and just 15 minutes later, he said, you know, I can't diagnose from an x-ray, but I'd like you to see a pulmonologist because I suspect that you have COPD.
[00:06:01] Dr. David Mannino: The main means of diagnosing COPD is with a pulmonary function test. Pulmonary function tests are broken down into three different ones.
[00:06:11] Micaela Arneson: That's Dr. Mannino again.
[00:06:13] Dr. David Mannino: The one that is done most commonly is called spirometry, and this measures not only how much air you can hold in your lungs, but how quickly you can get it out.
[00:06:24] John Linnell: I was given a spirometry test, and they were able to determine if there's an obstruction. Sure enough, I was diagnosed with COPD.
[00:06:33] Micaela Arneson: Spirometry is a relatively simple test, and it doesn't require much equipment. But it also doesn't measure everything.
[00:06:40] Dr. David Mannino: The other lung function tests require much more specialized equipment that is not as easily transportable. For example, we use something called a body box, which is a little spaceship-type device that a person sits in. This measures the total amount of air that can be contained in the lungs, including air that cannot be measured with spirometry.
[00:07:03] Micaela Arneson: This is called a lung volume test. Jan Cotton, another person living with COPD, did it back in 2000.
[00:07:10] Jan Cotton: I'm sure I had the disease prior to 2000 because of some conditions that I had noticed. I was taking classes and walking between classes had become cumbersome, being extra tired, short of breath and winded. The pulmonary function test at first was scary because it's a booth that you go into and you have to do exhausting blowing. They want to know how much forced air you can get out in so many seconds. And it was very cumbersome.
[00:07:39] Micaela Arneson: She also had a blood sample taken in what's known as an arterial blood gas test.
[00:07:44] Dr. David Mannino: Early in my career, this was the only way of measuring oxygen in the blood. A needle is put into an artery, typically this is in the wrist, and the blood has to be very quickly put into a bag of ice and taken to the laboratory so it can be analyzed.
[00:08:01] Jan Cotton: That's to see whatever CO2 levels you may have in your system. And I would like to tell everybody, there's no use in you trying to think you're going to fool this test. You may go in and tell your doctor, oh no, I didn't smoke. Well, I went in and had one done and they said, Jan, you just smoked a cigarette.
[00:08:18] Micaela Arneson: Other pulmonary function tests include diffusion capacity.
[00:08:21] Dr. David Mannino: This is a means of measuring how efficiently the lungs extract oxygen from the air and then get it into the body.
[00:08:31] Micaela Arneson: Or exercise tests which measure how efficiently a person's lungs are working when they're walking or cycling. Doctors can even use CAT scans to support a diagnosis.
[00:08:41] Dr. David Mannino: Imaging, which includes the chest x-rays and CAT scans, looks not only at the presence of emphysema, but also the presence of thickened airways. I think this may be particularly important in earlier stages of disease, where there may be evidence that some abnormalities in the lungs are already occurring.
[00:08:58] Micaela Arneson: Of course, diagnosis is just the beginning, and while it can bring some comfort, the way it feels to finally get an answer to a nagging question, a diagnosis of COPD can be really, really tough to hear.
[00:09:11] John Linnell: At the time, maybe I was in denial because I didn't quit smoking. It's hard to describe. It was a relief that now I knew why I was feeling the way I was, but I had this magical inhaler that was gonna hopefully fix everything. Well, it didn't. And I wish it had been stressed on me that COPD is a progressive disease. I was told to quit smoking and that that would slow the progression, but it didn't sink in.
[00:09:46] Jan Cotton: I was just devastated. I didn't know what to do with that diagnosis. I was told I would have 10 years to live, and I'm like, well, I may as well keep smoking.
[00:09:55] Micaela Arneson: For Jan and many others, the moment of being told your life has an end date is crushing. And some people with COPD may also have feelings of guilt or shame, or may feel stigma for being diagnosed with this what is often dismissed as a smoker's disease. So if you're in any way affected by COPD, know this.
[00:10:12] Dr. David Mannino: Most patients with COPD are able to live a long and productive life. I've had many patients with very severe lung function impairment that I've been following for 15 or 20 years.
[00:10:26] John Linnell: Quite frankly, I've never heard a more ridiculous statement in my life. Take your shoes and socks off, look at the bottom of your feet, and I want you to tell me where you see your expiration date stamped.
[00:10:40] Micaela Arneson: But wherever you are in your journey with COPD, and however it affects you:
[00:10:45] John Linnell: Any feelings are valid. There's no such thing as a feeling that doesn't count.
[00:10:51] Jan Cotton: It's okay to be vulnerable. It's okay to cry.
[00:10:54] Micaela Arneson: We'll talk more about coping with negative feelings in future episodes. And for information about support groups and other resources, visit our website, healthunmuted.com/resources. So what causes COPD?
[00:11:08] Mike Hess: The most common cause of COPD in the developed world is smoking, tobacco smoking specifically. 75 to 80% of COPD cases are caused by tobacco smoke.
[00:11:18] Micaela Arneson: Marijuana smoke might also contribute to COPD, but the jury's still out on that one, at least in the United States.
[00:11:24] Mike Hess: It's been difficult to study because of its illegal status. Some of the international research that's been done has pointed toward potentially even more severe damage than tobacco smoke. But then there are trade offs there, you know, most people generally don't smoke as much marijuana as they might smoke tobacco.
[00:11:40] Micaela Arneson: Quitting smoking is one of the most important things someone with COPD can do to prevent their condition from getting worse. It's also one of the hardest. We'll cover all of that in the next episode. Of course, not all people who smoke get COPD and not all people who have COPD are smokers. Wood smoke, biomass or biofuel burning, and other industry emissions are also risk factors.
[00:12:02] Dr. David Mannino: For example, Kentucky has a history of coal mining. It's less now than what it used to be. But people who work in mines where they're exposed to coal dust are at an increased risk for developing COPD. Another common industry in Kentucky is the horse industry. These can also be very dusty environments.
[00:12:22] Jan Cotton: I worked for the airline for over 25 years. I'm sure the airline didn't help you either, with the jet fuel, you know.
[00:12:28] Micaela Arneson: Finally, COPD can have a genetic component.
[00:12:31] Mike Hess: There is actually a potential to acquire genetic COPD, which is what we call alpha 1 antitrypsin deficiency. Alpha 1 antitrypsin deficiency is a condition where your body does not make enough of a certain enzyme, and that enzyme keeps another enzyme in check, and without that, it kind of wreaks a lot of havoc and damage inside your lungs, very similar to what smoke particles might do.
[00:12:55] Micaela Arneson: Alpha 1 antitrypsin deficiency is not terribly common. It affects about one in every 3000 to 5000 people in the US, but health experts believe it may be underdiagnosed because it can be tricky to recognize right away. We'll talk more about alpha 1 in a future episode. In any case, the environmental and behavioral risk factors for COPD mean that COPD tends to affect older people.
[00:13:17] Dr. David Mannino: COPD is most often diagnosed in people in their fifties, but as is true for many chronic diseases, it starts much earlier than that. COPD is a disease of childhood that manifests in adults. A lot of the early risk factors, secondhand smoke or other exposures, the pattern is being set earlier in life.
[00:13:44] Micaela Arneson: There's one important group of people we haven't talked much about.
[00:13:47] Mike Hess: We tend to focus on the clinical aspect of COPD and the lived experience of the person with COPD. And we can easily forget the people who care about somebody with COPD. Those folks also have to deal with some of the repercussions here.
[00:14:04] Micaela Arneson: It can sometimes be difficult to know how to relate to or support someone with a chronic illness. But family, friends, and other loved ones are a really important part of a person's care team.
[00:14:14] Mike Hess: If you are somebody who knows somebody who has COPD, remember that it's very difficult for them to explain what they're going through. COPD is often a disease of the inside. You know, people can look relatively healthy, but they're really struggling inside because they're trying to fight through this breathing problem. Be a supportive listener and cut them some slack.
[00:14:35] Jan Cotton: Let them know that they're loved. Let them know that we're here to support you and help you in any way that we possibly can.
[00:14:43] Micaela Arneson: It's also important for loved ones to be well educated on COPD and to have the emotional and logistical support they need. So, if you care about someone with COPD, know that this podcast is a resource for you too.
Speaking of resources, the COPD foundation is a great place to find more information about COPD and connect with others. In fact, most of the voices you'll hear on this podcast, including the four in this episode, are advocates for the COPD foundation.
[00:15:13] Jan Cotton: I just happened to be on the internet and saw COPD Foundation. I'm wondering, “Oh, what is this about? This is somebody I can call and cry on their shoulder.” I got this wonderful woman. And I wanted to hear, oh, woe is me, I wanted to hear, you poor thing, but she didn't. She said, it's something in your voice that lets me know that you're a fighter. And she let me know that they had a COPD information line that was manned by COPDers. And that's what changed my life.
[00:15:46] Micaela Arneson: Jan helped man the COPD Foundation 360 Community Support Line at 1 866 316 COPD, which is open to anyone affected by COPD. And so is COPD 360 Social, a social networking group. The American Lung Association also has a helpline and support groups called Better Breathers. In addition to these two organizations, the Mayo Clinic, Cleveland Clinic, and National Institutes of Health are all trusted sources for more information about COPD. You can find links to all these resources on our website. Just go to healthunmuted.com/resources.
Finally, if you've recently been diagnosed and you're feeling stressed or overwhelmed, there are some simple things you can do to help manage your emotions.
[00:16:30] Mike Hess: Exercise and stretching, taking some time to relax, maybe doing a little meditation, listening to some good music and also make sure that you're talking to friends, families, caregivers, counselors, peers, whoever it is. Make sure that you're maintaining those lines of communication and support. COPD is a very prevalent disease, and there are a lot of people who are willing to support you. Go out and find some of those folks.
[00:16:56] Micaela Arneson: This show is part of the Health UNMUTED audio library by Mission Based Media and created in collaboration with the COPD Foundation. To listen and learn more, visit healthunmuted.com and follow our show on your favorite podcast player. There are still many questions to answer about COPD, so please do keep listening and share it with someone in your life.