Some people with COPD may need a little extra oxygen to help make breathing easier. This is called oxygen therapy, and we cover it in this episode. We'll also learn how to travel safely with oxygen and what to do if you ever feel insecure about wearing your oxygen in public. Plus, we review several treatment options for people with advanced lung disease.
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[00:00:01] Jean Rommes: I started to have to use oxygen more and more often. I didn't want to go where, you know, I had this hose in my nose.
[00:00:10] Micaela Arneson: For some people, like Jean Rommes, COPD, or chronic obstructive pulmonary disease, gets worse over time.
[00:00:17] Jean Rommes: It was really difficult to get out and actually move and do things, primarily because I didn't want to be seen in public with the oxygen.
[00:00:25] Micaela Arneson: Quitting smoking and lifestyle changes only help so much.
[00:00:29] Jean Rommes: And I thought, well, I can get along with being short of breath and having to stop, not realizing that the effects of all of that are cumulative over time.
[00:00:39] Micaela Arneson: Lung function worsens, breathing becomes more difficult, and other interventions are needed.
[00:00:45] Mike Hess: Oxygen therapy gives you a little bit of extra oxygen. We often call it supplemental oxygen.
[00:00:50] Dr. Mina Pirzadeh: If there's ongoing tissue destruction and inflammation and it really starts to impact your gas exchange, you may need supplemental oxygen, but some people may be beyond that point and need more surgical intervention, which come in a couple of flavors.
[00:01:07] Micaela Arneson: In this episode, we'll explore what happens when COPD gets to a more advanced stage, starting with oxygen therapy. So if you've ever wondered how oxygen is delivered or how you can still go on vacation with an oxygen tank, keep listening. We'll get to that. Also, we'll talk about lung transplants and other procedures you may have never heard of, and stay tuned to the end, because as ever, we'll share a list of resources where you can learn more. This is the COPD Podcast. I'm your host, Micaela Arneson.
Many commonly prescribed treatments for COPD like oxygen therapy and inhalers were first trialed by patients in the 1960s. The sixties were sort of a revolutionary decade for COPD. The disease was formally defined, pulmonary rehabilitation was introduced, and even the first human lung transplant was performed in 1963. So while the application of these treatments is still relatively new, the development of oxygen therapy actually goes as far back as the 1700s. It's prescribed to people who have low levels of oxygen in their blood, a condition known as hypoxemia.
[00:02:11] Dr. David Mannino: Hypoxemia is defined as a pulse oxygenation of less than 88%.
[00:02:18] Micaela Arneson: That's Dr. David Mannino, a pulmonologist. There are a couple different ways to measure blood oxygen. But the easiest method is a small device called a pulse oximeter. You can get one at a drugstore.
[00:02:30] Dr. David Mannino: A pulse oximeter shines a red light through your finger and it can analyze the reflection of that light to determine the percentage of oxygen that's in your blood. A normal adult will be typically 93 to 97 percent and when I check mine, it usually comes within that range and I have a pulse oximeter right in front of me, so I can tell you what it is right now. Yeah, I'm at 99 right now with a pulse of 60, so that's normal.
[00:03:02] Micaela Arneson: Sometimes people with more advanced COPD will have chronically low blood oxygen levels, even when they're at rest. Other people, like John Linnell, experience a drop during certain activities.
[00:03:13] John Linnell: Within a year or two after my initial diagnosis, it became necessary for me to sleep with oxygen. I did an overnight oximetry study. I slept with a pulse oximeter on my finger. It wasn't until years later, as my COPD progressed, that I needed oxygen therapy simply when walking more than, say, just across the street or down the block.
[00:03:39] Micaela Arneson: Oxygen can also be administered when someone has an exacerbation or a sudden worsening of their symptoms. This happened to Jean Rommes a little while after her diagnosis.
[00:03:49] Jean Rommes: One Sunday, I got in the shower, I got the shampoo into my hair, and I simply could not breathe. I ended up in the hospital with essentially what amounted to acute respiratory failure. I was getting all this oxygen, but I was still puffing and puffing, just sitting there or lying there in the bed. The whole experience was pretty scary.
[00:04:11] Micaela Arneson: So John and Jean use oxygen, but how common is it in COPD treatment?
[00:04:16] Dr. Mina Pirzadeh: I would say the majority of patients actually don't require oxygen therapy.
[00:04:21] Micaela Arneson: Dr. Mina Pirzadeh is a pulmonologist who works with patients needing critical care, and she says people with a certain type of COPD have a greater chance of eventually needing oxygen therapy than others.
[00:04:32] Dr. Mina Pirzadeh: We often break people down into those who have more of chronic bronchitis, which is that chronic phlegm production and cough, versus those who are more predominantly emphysema. So, patients who have tissue destruction and issues with oxygen and gas exchange. So, if you have more of an emphysema type, the more likely you will need oxygen.
[00:04:54] Micaela Arneson: If you're now wondering whether you need oxygen therapy, you should discuss it and any other questions with a qualified healthcare provider. This show was created for educational purposes only. It is not a substitute for formal medical advice, diagnosis, or treatment.
Oxygen therapy has progressed quite a bit since the 1700s. Today, it can be delivered a couple different ways.
[00:05:22] Dr. Mina Pirzadeh: On a day-to-day basis, during the daytime, oftentimes people are just wearing that nasal cannula, and that is generally enough.
[00:05:31] Micaela Arneson: This is what Jean called a hose in the nose, and it connects to a canister of some kind.
[00:05:36] Dr. Mina Pirzadeh: In broad terms, we have the big oxygen cylinder tanks, then we have portable oxygen tanks, which are smaller, and then we have concentrated oxygen tanks, which are the smallest and often are most mobile.
[00:05:49] Micaela Arneson: Unlike a tank, which stores oxygen, a concentrator pulls it in from the air around you, removing nitrogen and other gases, so you're just breathing purified oxygen. Bigger concentrators can be plugged into a wall socket and smaller ones run on batteries. Jean and John are very familiar with them.
[00:06:08] Jean Rommes: When I first was prescribed oxygen, I think it was probably in 2002 and at the time, I had a concentrator in my office and a concentrator at my house, and I had portable tanks for driving back and forth and for outside stuff. When I travel, when I fly, I need oxygen, so I use a portable oxygen concentrator.
[00:06:30] John Linnell: You cannot bring oxygen tanks on an airplane. So since we like to travel, sometimes internationally, or go on a cruise, we typically will fly to the port. That's where my portable concentrator comes in very handy. I don't need it just sitting in the airplane, but I do need it in the airport with my luggage and cruise ships are typically about a thousand feet long. There's a lot of walking involved. So I find that having my concentrator with an extra battery is very helpful to me.
[00:07:12] Micaela Arneson: Oxygen can also be delivered via tanks. Tanks hold oxygen in either gas or liquid form and they can be large or small.
[00:07:20] Jean Rommes: The real difference between a tank and a portable oxygen unit that uses liquid is the weight. Tanks weigh a lot. The other advantage is that the liquid oxygen dispenser will last a lot longer than any tank.
[00:07:36] Micaela Arneson: Ultimately, Dr. Pirzadeh says the type of tank or concentrator someone needs depends on the severity of their condition.
[00:07:42] Dr. Mina Pirzadeh: If you're requiring fairly low amounts of supplemental oxygen, you have many more options into the type of devices, but once you reach a certain threshold, greater than four or five liters of oxygen per minute, it becomes very limited in the number of concentrators and portable tanks that are available.
[00:08:04] Micaela Arneson: And if someone's condition has really progressed.
[00:08:07] Dr. Mina Pirzadeh: If it starts to really affect your ability to breathe out carbon dioxide, there is what we'd call non-invasive therapy, which is really like a breathing machine that a patient may have to wear at nighttime when they're sleeping.
[00:08:21] Micaela Arneson: Breathing machines help keep your airways open and make it easier for your lungs to work. There are two main kinds, a BiPAP, which is actually a trademarked name by Phillips Respironics in the US, and a CPAP.
[00:08:34] Dr. Mina Pirzadeh: A BiPAP has two pressure settings, one when you're breathing in and one when you're breathing out, to make sure that you're moving air appropriately. The CPAP machine is primarily used for sleep apnea, because there's just one pressure that the patient is experiencing, and that is making sure that the airways stay open.
[00:08:55] Micaela Arneson: Both BiPAP and CPAP machines were used a lot more during the COVID 19 pandemic for those hospitalized with breathing difficulties, as an alternative to ventilators, which are much more invasive. But sometimes people temporarily need mechanical ventilation. In this case, a tube is inserted through the mouth or nose directly into the lungs and a provider will prescribe medication to help the person relax and sleep.
In more serious cases, surgery might be necessary. Hospital stays can last a day or two, or a week, or even longer, depending on the severity of someone's condition. The COPD Foundation recommends that you always bring an updated list of your medications and allergies, the name and contact information of someone you trust to help make decisions and a copy of your living will or medical power of attorney.
So that's the equipment. But what about the personal experience of being on oxygen therapy?
[00:09:51] John Linnell: Sadly, people have a stigma, a fear of being seen wearing supplemental oxygen. They don't want to leave their house. Well, that lowers your quality of life.
[00:10:06] Micaela Arneson: COPD is normally a disease of the inside, but an oxygen tank and nasal cannula suddenly make it extremely visible and that exposure can be uncomfortable. John says a lot of people with COPD imagine that others are judging them or making negative assumptions about their health status.
[00:10:24] John Linnell: That, oh, she's contagious, or, oh, what's wrong with her? Oh my goodness, maybe she has COVID.
[00:10:31] Micaela Arneson: Jan Cotton, who also uses oxygen, tries to help other people with COPD overcome their insecurity, and wear their equipment confidently.
[00:10:39] Jan Cotton: I went into the doctor's office and I saw this woman in the office, she was like, “I just hate wearing this. I feel so embarrassed.” I said, “Honey, you have to do what you have to do.” I said, “you want me to put mine on?” I put my oxygen on and I just took a selfie of both of us sitting there with the oxygen, made her feel so much better. You're not alone. You need the oxygen.
[00:11:01] Micaela Arneson: Humor can also help diffuse uncomfortable situations and put everybody at ease.
[00:11:06] John Linnell: One of the people in a social media group I belong to said: “There was a little child in the grocery cart. He was just staring at me because he had never seen it before. Well, I just leaned over and said, "It's okay, honey. I'm from another planet. I bring my own air." Little kid, who of course just started giggling, "Mommy, this lady's from a different planet!”
[00:11:34] Micaela Arneson: Being vulnerable in public in front of strangers is uncomfortable for almost all of us, but being physically vulnerable is especially difficult. So if you're someone who needs oxygen therapy and you're feeling nervous or hesitant about wearing your kit outside the house, know that you're not alone and that the experience may not be as bad as you think.
[00:11:53] John Linnell: If you see someone with a walker or in a wheelchair, you wouldn't point at them. And I don't think people point at us when we wear oxygen either. All it will do is benefit you, because you do need to wear your oxygen if it's prescribed. Staying active is key to lowering the rate of progression of COPD and leading a happy life.
[00:12:26] Dr. Mina Pirzadeh: There are more advanced therapies for COPD outside of inhalers and pill medications. Those have more to do with surgical and bronchoscopic interventions.
[00:12:37] Micaela Arneson: Dr. Pirzadeh trained in pulmonary and critical care medicine. So the patients she sees tend to have extensive lung damage.
[00:12:45] Dr. Mina Pirzadeh: I get to take care of the sickest of the sick patients when they end up in the hospital. The question I get asked most often is, can I ever come off oxygen? Once the damage is done, the tissue destruction has happened, your lung isn't going to be able to repair all of that to the point where you'll come off oxygen. It oftentimes will reach a point where we've put them on all the medications we have available and they're still having severe symptoms.
[00:13:11] Micaela Arneson: In these most extreme cases, there are a couple interventions doctors can try.
[00:13:15] Dr. Mina Pirzadeh: We have lung volume reduction, where we take out part of the diseased lung to allow more space for the better parts of the lung to function. And that can be done either through surgery or through bronchoscopic valves.
[00:13:31] Micaela Arneson: Bronchoscopic valves are very small devices that are implanted in the lungs:
[00:13:35] Dr. Mina Pirzadeh: That basically deflate part of the lung so that the rest of the lung can have more space to move air in and out.
[00:13:44] Micaela Arneson: But if lung volume reduction isn't an option…
[00:13:47] Dr. Mina Pirzadeh: The kind of last-ditch effort is lung transplant.
[00:13:51] Micaela Arneson: Lung transplants are very rare. Worldwide, only about 4600 are performed each year, and around 2000 of those are done in the United States.
[00:14:00] Dr. Mina Pirzadeh: There's only a very small subset of severe COPD patients would even be considered for transplant. You have to be done quitting smoking. You have to not be too sick. You can't have competing comorbidities that are more life threatening.
[00:14:16] Micaela Arneson: Age is also important, as doctors tend not to perform the operation on older people. And, as you can probably imagine, it takes a long time to prepare for the surgery and to recover afterward.
[00:14:27] Dr. Mina Pirzadeh: You need to be on immune suppressing medication and things like that. So it's a very rough road, and we try to avoid it.
[00:14:34] Micaela Arneson: Smoking, air pollution, and environmental irritants can all cause lung tissue destruction. But some people also develop COPD through a genetic condition called alpha-1 antitrypsin deficiency. And this requires a different kind of treatment.
[00:14:47] Dr. Mina Pirzadeh: Basically, you develop emphysema, but it's not because of cigarette smoking and inflammation, it's actually because your body is lacking a specific type of enzyme. Those patients will often present much younger at age 30, 40. And so for those patients, while we still treat them with similar inhalers and such, we also provide supplementation of the enzyme that they're deficient with.
[00:15:11] Micaela Arneson: We'll talk about alpha-1 antitrypsin deficiency in a later episode in this miniseries.
Now it's time to talk about resources. Firstly, if you're concerned about traveling with oxygen, Mike Hess, a respiratory therapist, has a few words of advice.
[00:15:26] Mike Hess: Make sure that you're planning to bring enough with you. Bring a portable oxygen concentrator or arrange with an oxygen company to supply you at your destination. Each of the airlines has a little bit different process of approving those devices for use on their planes, so make sure that you're planning ahead, accounting for all the variables there.
[00:15:44] Micaela Arneson: The American Lung Association also has tips on traveling with oxygen on their website. And if you're flying, you can always check with the airline about what equipment they'll allow on board. More information about oxygen therapy, equipment, and lung volume reduction can be found on the COPD Foundation's website. The foundation also runs COPD 360 social, which is a social media site for anyone affected by COPD to talk about oxygen therapy, medications, surgical intervention, and much more. And if you want to learn about alpha-1 antitrypsin deficiency, tune into our upcoming episode on it. You can also visit the Alpha-1 Foundation. Links to these sites and more are on our website, healthunmuted.com/resources.
This is the COPD Podcast hosted by me, Micaela Arneson. This show is part of the Health UNMUTED audio library by Mission Based Media. 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 the show with someone in your life.