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COPD and Lung Transplants: When and How to Advocate for Yourself
COPD can take a toll on your lungs and sometimes a lung transplant is the best option. Unfortunately, patients often wait too long to get the lung transplant they need. In this podcast, Dr. Robert Reed, Medical Director of the University of Maryland Lung Transplant Program, addresses what signs to look for that indicate a lung transplant might be beneficial, how to advocate for yourself to get the care you need in a timely fashion and the benefits of getting a lung transplant.
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Learn more about Dr. Reed
Robert Reed, MD
Robert Reed, MD, is a Professor of Medicine at the University of Maryland School of Medicine and Medical Director of the University of Maryland Lung Transplant Program at the University of Maryland Medical Center. Dr. Reed has over 100 peer-reviewed publications, multiple book chapters, national presentations and awards. His current research focuses on clinical management of Chronic Obstructive Pulmonary Disease (COPD) with active funding from the American Lung Association, Institute for Clinical and Translational Research (ICTR), and the Department of Defense. Dr. Reed manages pre- and post-operative lung transplant recipients.Learn more about Dr. Reed
Transcription:
COPD and Lung Transplants: When and How to Advocate for Yourself
Scott Webb: Welcome to Live Greater, a Health and Wellness podcast brought to you by the University of Maryland Medical System. We put knowledge and care within reach, so you have everything you need to live your life to the fullest. I'm Scott Webb. And today, we are talking about COPD and lung transplants and the importance of early diagnosis and treatment.
And I'm joined today by Dr. Robert Reed. He's a Professor of Medicine at the University of Maryland School of Medicine and Medical Director of the University of Maryland Lung Transplant Program at the University of Maryland Medical Center. Doctor, thanks so much for your time. Today, we're going to learn more about COPD, lung transplants and a whole bunch of other stuff that really requires your expertise. But as we get rolling here, let's just start with some basics. What is COPD?
Dr. Robert Reed: COPD is an acronym and it stands for chronic obstructive pulmonary disease, that's a condition almost always caused by smoking. The different types of COPD include chronic bronchitis as well as emphysema. Chronic bronchitis is a condition where there's a lot of coughing and emphysema is really more of a problem associated with shortness of breath.
Scott Webb: Okay. So, smoking is usually the culprit. And, you know, I talk to a lot of experts and none of them ever say that smoking is good for you, so not surprised to hear that smoking is bad. We should all quit smoking if we're smoking, and it can lead to COPD. So if that then leads to a lung transplant, you know, sure, I can sort of picture that in my head. I'm sure listeners can. But really, what's involved in a lung transplant?
Dr. Robert Reed: Lung transplant involves at the simplest taking lungs from someone who's died and putting them into someone else whose lungs are so bad that they need to be replaced. It sounds simple when I say it like that, but it really takes a tremendous amount of coordination to make it all happen and it's really a pretty major operation.
Scott Webb: Yeah, I'm sure that it's a big team. Probably a lot of the buzzwords in medicine, multidisciplinary, interdisciplinary. It's probably a lot involved. You say it, it sounds so simple. "Oh, so we just take some lungs and we put them in." Sure. A lot going on. A lot involved. What percentage of COPD patients actually need lung transplants?
Dr. Robert Reed: Oh, it's a tiny fraction. There are about 15 to 20 million Americans with COPD, and only about a thousand of them undergo a lung transplant every year. So, it's really quite uncommon for a patient with COPD to get to the point where a transplant is needed. When it does happen, a transplant can really be a remarkable life-changing event for them. Living with advanced COPD is a lot like drowning all the time. It's just miserable. I regularly see patients who are really handicapped from their breathing problems and pretty much homebound. And when they undergo a lung transplant, it's truly a second chance at living. They get back to the sports that they had to abandon, like golf or skiing. They travel, they see the world. It's really a remarkable difference.
Scott Webb: Yeah, I'm sure it's a massive change in their quality of life for some, just even now being able to get out of the house, possibly, you know, play sports again. When we think about the extension, the extender of that, like how long does it extend someone's life? Do you have a sort of a ballpark for us?
Dr. Robert Reed: Sure. Transplant holds the promise of a longer, better life. And how much better and how much longer life can be with a transplant really depends on both how well things go after the transplant, as well as how poorly things would've gone without the transplant. Healthier people often do better after a transplant, but they also would've done better without the transplant compared to people that are really at the end of the road. Of people who don't have major issues right at the time of the transplant, about half are still alive 10 years later. But the longest I've ever seen somebody live after a transplant was over 30 years.
Scott Webb: Wow, that would be pretty amazing. And I'm just sort of wondering, as you say, it's a small percentage of COPD patients that end up needing transplants or opting for transplants. What are the signs and symptoms? You know, how do you know when it's time? Do you really rely on the expertise of your provider, you're specialist like yourself? Or is that done in conjunction? Do you have a long conversation with your patients and say, you know, "I'm recommending this at this point because I don't think there's anything else we can do"?
Dr. Robert Reed: It is pretty nuanced and it is pretty tailored to an individual conversation. But I would guess as a rule of thumb, if you're on oxygen, it's probably not too early to start thinking about transplant. Having a high carbon dioxide level or getting admitted to the hospital for a COPD exacerbation or other reasons to talk to a lung doctor about whether a transplant may be something to think about in the future.
Scott Webb: Yeah, I see what you mean, right? That's, if you're already on oxygen, probably at least worth beginning the conversation. And I think I've heard this and good to have your expertise, but sometimes patients even though they're planning on having a lung transplant or you've recommended that to them, as you say, can be nuanced. But that's the plan anyway, but the patients can deteriorate so quickly. So, how do you prevent that? Is it just a matter of not sort of living with things? Is it a matter of reaching out to our providers and being diagnosed as early as possible?
Dr. Robert Reed: Yeah. It really is a challenging thing to time the transplant correctly. I find myself talking about Goldilocks and the Three Bears when I talk about the timing of transplant. You know, you don't want to be too early, you don't want to be too late. Try to be just right. We don't want to transplant people before they need it, but it does take a lot of time to get through the evaluation process that's necessary. It takes a lot of time once someone's listed for a transplant for us to review donors and to finally get a good donor that will do well for an individual person. And when people are really sick and they come in and don't have a lot of time, I don't have an opportunity to have us work with them to tune them up for a transplant, it's just a lot more risk when it happens that way. So, we do prefer to get people a little early so we have time to work on them and get them optimized to get that procedure safely done.
Scott Webb: Yeah, I see what you mean. And of course, you have to have the donors well, right? You have to have the donor lungs available as well, and they have to match up and, as you say, people being sort of tuned up and ready for this. So, there's a lot going on, a lot of nuance, a lot of moving parts, a lot of team members. So really interesting to think about some of this stuff.
I also want to ask you about patients advocating for themselves and getting the care they need in a timely fashion. Do you find that patients reach out directly to a lung transplant team, or is that just really not done that way, that generally it's you go through your primary, you get referrals, and then they end up in your office?
Dr. Robert Reed: We really see patients that come to our attention both ways. I would say the majority come through a referral from their physician. It's generally best for patients to have an open conversation with the docs that know them well. There may be a simple reason why a transplant wouldn't be beneficial to them. Not all providers are familiar with transplant though, and I usually tell people to be proactive. It's your life. Advocate for yourself. Sometimes providers just don't refer to transplant because someone is still smoking or their weight is a problem. Our particular program is happy to work with folks like that in order to get them the help they need to help themselves.
Every once in a while we're able to get somebody healthy enough that they just no longer even need a transplant, and that's as much of a success for us as a transplant itself. So we're really happy to help even if it isn't with a transplant at all.
Scott Webb: Yeah. You've mentioned a couple of times just the smoking aspect of this. Maybe you have some suggestions. When we think about smoking cessation and the importance of that, what's your best advice?
Dr. Robert Reed: We have a number of resources at University of Maryland that we can leverage in order to help people quit smoking. We have a dedicated smoking cessation clinic that has a physician who's an expert in smoking cessation and she works with a nurse practitioner that really help people to navigate that journey to quitting smoking. And most people given enough effort and enough time can ultimately quit smoking. And each time that they try to quit, they often fail. But if you're persistent and you stick with it, most people can quit.
Our program, generally as a rule of thumb, requires that people, if they have sufficient time to do it, quit smoking for at least six months. And the reason for six months is because, if you're able to quit smoking for six months, most folks can go on and not go back to smoking after that. It does happen every once in a while after transplant, and when it does, we work to help people quit. We really often emphasize that it's something that we value as well, because it's honoring the donor and it's just not something that is good for the lungs or the heart or any aspect of the post-transplant health.
Scott Webb: I never thought of it that way. That's such a beautiful way to think of that, that you know, if we're going to honor the donor, who's giving you this second chance at life, please don't start smoking or please let us help you to stop smoking. That's just such a beautiful way to think of that. Doctor, this has been really good today, really educational. As we wrap up here, what are your final thoughts and takeaways when we think about COPD, lung transplants and how you can help folks?
Dr. Robert Reed: Well, transplantation really begins with the decision to donate. And organ donation can often be the only good thing that comes of a tragedy for the many families facing the loss of a loved one. A single donor can save eight lives and help dozens more. And without donation, transplant just can't happen.
Scott Webb: Yeah. And they really are. It seems like we've thrown the word hero around a lot over the last few years, but truly, you know, those that donate, as you say, could be as many as eight lives, the people they get to keep on living and live those lives, thanks to them, those heroes. And from the other side of it, of course, we talked about here, honoring them. Really good stuff today, doctor. Thanks so much. You stay well.
Dr. Robert Reed: My pleasure. Thanks for having me.
Scott Webb: And find more shows like this one at umms.org/podcast. Thank you for listening to Live Greater, a Health and Wellness podcast, brought to you by the University of Maryland Medical System. We look forward to you joining us again.
COPD and Lung Transplants: When and How to Advocate for Yourself
Scott Webb: Welcome to Live Greater, a Health and Wellness podcast brought to you by the University of Maryland Medical System. We put knowledge and care within reach, so you have everything you need to live your life to the fullest. I'm Scott Webb. And today, we are talking about COPD and lung transplants and the importance of early diagnosis and treatment.
And I'm joined today by Dr. Robert Reed. He's a Professor of Medicine at the University of Maryland School of Medicine and Medical Director of the University of Maryland Lung Transplant Program at the University of Maryland Medical Center. Doctor, thanks so much for your time. Today, we're going to learn more about COPD, lung transplants and a whole bunch of other stuff that really requires your expertise. But as we get rolling here, let's just start with some basics. What is COPD?
Dr. Robert Reed: COPD is an acronym and it stands for chronic obstructive pulmonary disease, that's a condition almost always caused by smoking. The different types of COPD include chronic bronchitis as well as emphysema. Chronic bronchitis is a condition where there's a lot of coughing and emphysema is really more of a problem associated with shortness of breath.
Scott Webb: Okay. So, smoking is usually the culprit. And, you know, I talk to a lot of experts and none of them ever say that smoking is good for you, so not surprised to hear that smoking is bad. We should all quit smoking if we're smoking, and it can lead to COPD. So if that then leads to a lung transplant, you know, sure, I can sort of picture that in my head. I'm sure listeners can. But really, what's involved in a lung transplant?
Dr. Robert Reed: Lung transplant involves at the simplest taking lungs from someone who's died and putting them into someone else whose lungs are so bad that they need to be replaced. It sounds simple when I say it like that, but it really takes a tremendous amount of coordination to make it all happen and it's really a pretty major operation.
Scott Webb: Yeah, I'm sure that it's a big team. Probably a lot of the buzzwords in medicine, multidisciplinary, interdisciplinary. It's probably a lot involved. You say it, it sounds so simple. "Oh, so we just take some lungs and we put them in." Sure. A lot going on. A lot involved. What percentage of COPD patients actually need lung transplants?
Dr. Robert Reed: Oh, it's a tiny fraction. There are about 15 to 20 million Americans with COPD, and only about a thousand of them undergo a lung transplant every year. So, it's really quite uncommon for a patient with COPD to get to the point where a transplant is needed. When it does happen, a transplant can really be a remarkable life-changing event for them. Living with advanced COPD is a lot like drowning all the time. It's just miserable. I regularly see patients who are really handicapped from their breathing problems and pretty much homebound. And when they undergo a lung transplant, it's truly a second chance at living. They get back to the sports that they had to abandon, like golf or skiing. They travel, they see the world. It's really a remarkable difference.
Scott Webb: Yeah, I'm sure it's a massive change in their quality of life for some, just even now being able to get out of the house, possibly, you know, play sports again. When we think about the extension, the extender of that, like how long does it extend someone's life? Do you have a sort of a ballpark for us?
Dr. Robert Reed: Sure. Transplant holds the promise of a longer, better life. And how much better and how much longer life can be with a transplant really depends on both how well things go after the transplant, as well as how poorly things would've gone without the transplant. Healthier people often do better after a transplant, but they also would've done better without the transplant compared to people that are really at the end of the road. Of people who don't have major issues right at the time of the transplant, about half are still alive 10 years later. But the longest I've ever seen somebody live after a transplant was over 30 years.
Scott Webb: Wow, that would be pretty amazing. And I'm just sort of wondering, as you say, it's a small percentage of COPD patients that end up needing transplants or opting for transplants. What are the signs and symptoms? You know, how do you know when it's time? Do you really rely on the expertise of your provider, you're specialist like yourself? Or is that done in conjunction? Do you have a long conversation with your patients and say, you know, "I'm recommending this at this point because I don't think there's anything else we can do"?
Dr. Robert Reed: It is pretty nuanced and it is pretty tailored to an individual conversation. But I would guess as a rule of thumb, if you're on oxygen, it's probably not too early to start thinking about transplant. Having a high carbon dioxide level or getting admitted to the hospital for a COPD exacerbation or other reasons to talk to a lung doctor about whether a transplant may be something to think about in the future.
Scott Webb: Yeah, I see what you mean, right? That's, if you're already on oxygen, probably at least worth beginning the conversation. And I think I've heard this and good to have your expertise, but sometimes patients even though they're planning on having a lung transplant or you've recommended that to them, as you say, can be nuanced. But that's the plan anyway, but the patients can deteriorate so quickly. So, how do you prevent that? Is it just a matter of not sort of living with things? Is it a matter of reaching out to our providers and being diagnosed as early as possible?
Dr. Robert Reed: Yeah. It really is a challenging thing to time the transplant correctly. I find myself talking about Goldilocks and the Three Bears when I talk about the timing of transplant. You know, you don't want to be too early, you don't want to be too late. Try to be just right. We don't want to transplant people before they need it, but it does take a lot of time to get through the evaluation process that's necessary. It takes a lot of time once someone's listed for a transplant for us to review donors and to finally get a good donor that will do well for an individual person. And when people are really sick and they come in and don't have a lot of time, I don't have an opportunity to have us work with them to tune them up for a transplant, it's just a lot more risk when it happens that way. So, we do prefer to get people a little early so we have time to work on them and get them optimized to get that procedure safely done.
Scott Webb: Yeah, I see what you mean. And of course, you have to have the donors well, right? You have to have the donor lungs available as well, and they have to match up and, as you say, people being sort of tuned up and ready for this. So, there's a lot going on, a lot of nuance, a lot of moving parts, a lot of team members. So really interesting to think about some of this stuff.
I also want to ask you about patients advocating for themselves and getting the care they need in a timely fashion. Do you find that patients reach out directly to a lung transplant team, or is that just really not done that way, that generally it's you go through your primary, you get referrals, and then they end up in your office?
Dr. Robert Reed: We really see patients that come to our attention both ways. I would say the majority come through a referral from their physician. It's generally best for patients to have an open conversation with the docs that know them well. There may be a simple reason why a transplant wouldn't be beneficial to them. Not all providers are familiar with transplant though, and I usually tell people to be proactive. It's your life. Advocate for yourself. Sometimes providers just don't refer to transplant because someone is still smoking or their weight is a problem. Our particular program is happy to work with folks like that in order to get them the help they need to help themselves.
Every once in a while we're able to get somebody healthy enough that they just no longer even need a transplant, and that's as much of a success for us as a transplant itself. So we're really happy to help even if it isn't with a transplant at all.
Scott Webb: Yeah. You've mentioned a couple of times just the smoking aspect of this. Maybe you have some suggestions. When we think about smoking cessation and the importance of that, what's your best advice?
Dr. Robert Reed: We have a number of resources at University of Maryland that we can leverage in order to help people quit smoking. We have a dedicated smoking cessation clinic that has a physician who's an expert in smoking cessation and she works with a nurse practitioner that really help people to navigate that journey to quitting smoking. And most people given enough effort and enough time can ultimately quit smoking. And each time that they try to quit, they often fail. But if you're persistent and you stick with it, most people can quit.
Our program, generally as a rule of thumb, requires that people, if they have sufficient time to do it, quit smoking for at least six months. And the reason for six months is because, if you're able to quit smoking for six months, most folks can go on and not go back to smoking after that. It does happen every once in a while after transplant, and when it does, we work to help people quit. We really often emphasize that it's something that we value as well, because it's honoring the donor and it's just not something that is good for the lungs or the heart or any aspect of the post-transplant health.
Scott Webb: I never thought of it that way. That's such a beautiful way to think of that, that you know, if we're going to honor the donor, who's giving you this second chance at life, please don't start smoking or please let us help you to stop smoking. That's just such a beautiful way to think of that. Doctor, this has been really good today, really educational. As we wrap up here, what are your final thoughts and takeaways when we think about COPD, lung transplants and how you can help folks?
Dr. Robert Reed: Well, transplantation really begins with the decision to donate. And organ donation can often be the only good thing that comes of a tragedy for the many families facing the loss of a loved one. A single donor can save eight lives and help dozens more. And without donation, transplant just can't happen.
Scott Webb: Yeah. And they really are. It seems like we've thrown the word hero around a lot over the last few years, but truly, you know, those that donate, as you say, could be as many as eight lives, the people they get to keep on living and live those lives, thanks to them, those heroes. And from the other side of it, of course, we talked about here, honoring them. Really good stuff today, doctor. Thanks so much. You stay well.
Dr. Robert Reed: My pleasure. Thanks for having me.
Scott Webb: And find more shows like this one at umms.org/podcast. Thank you for listening to Live Greater, a Health and Wellness podcast, brought to you by the University of Maryland Medical System. We look forward to you joining us again.