This article was reviewed by Senior Director of Community Engagement and COPD360social Community Manager, Bill Clark, as well as certified staff Respiratory Therapists on February 4, 2020.

Dear COPD Coach,
My mother was diagnosed with COPD 4 years ago. She is only 63 years old and she still smokes. I know she will not get better from COPD but I believe the smoking is negating all the oxygen and medications she takes for her symptoms. Over the past couple of months she has more fatigued legs and feet cramping and seems depressed. She stays at home in her comfort zone. She does as much as she can, but simple tasks like cooking exhausts her.

She doesn’t share anything on her COPD with me and I am wondering if there are stages of COPD? I fear she may be entering a stage where I may need to become more involved.

Do you have any suggestions?

—Concerned Daughter

Dear Concerned,

Let me begin by telling you how sorry I am that your family and particularly your mother are facing these difficulties. COPD does not only affect the person with the diagnosis, it usually has significant impact on the entire family!

You are very right in your assumption that by continuing to smoke your mother is negating, or certainly significantly lessening, the benefits of the oxygen and medications. By being inactive, she is also not helping her prognosis. I have heard many stories of people recently diagnosed who, whether consciously or not, withdrew into their "comfort zone" and most amazingly continued to smoke despite the evidence that says smoking most probably caused their COPD! Those less educated about COPD will often assume the stance that "if this is going to kill me, I might as well continue what I enjoy!"

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This article was reviewed by Senior Director of Community Engagement and COPD360social Community Manager, Bill Clark, as well as certified staff Respiratory Therapists on February 4, 2020.

Dear COPD Coach,
I use supplemental oxygen, and generally use 4 liters at rest and up to 6 with exertion. I was wondering if it is possible for me to use a pulse flow portable concentrator. If not, is there a continuous unit that would provide enough oxygen? Is there a unit that would allow me to be able to fly on a plane?

-Looking for answers

Dear Looking,

For most "high flow" patients, most often a pulse unit is not an answer. Too often, it is assumed that a pulse unit that has settings of 5 or 6 indicates that this is the liter flow, which is not the case. I’ll explain. Continuous Flow units are rated in Liters per minute. Because pulse units do not put out continuous oxygen, they cannot be measured in liters per minute. Instead, they are classified by size of the individual pulse, how often that pulse can be delivered in a minute, and when the pulse is delivered in the inspiratory (breathing) cycle. More recently, in order to compare the output to continuous flow units, the term “equivalent Liter Flow” is sometimes used.

The numbers on pulse units are settings and are not standardized with other manufacturers. For example, a setting of 1 on a unit might really only be one half liter equivalent, which might mean that at a setting of 5, the unit might only be producing 3 liters equivalent. The other problem when a high flow patient uses a pulse unit is that it is often very easy to "over breathe" the unit, which means you are taking more breathes per minute than the unit is capable of producing. When this occurs, the user will either get a smaller pulse, a pulse with less oxygen, or no pulse at all. In a situation where you exert and become significantly out of breath, the unit may not be able to saturate you – at any setting.

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This article was reviewed by Senior Director of Community Engagement and COPD360social Community Manager, Bill Clark, as well as certified staff Respiratory Therapists on February 5, 2020.

Dear COPD Coach,
I have a real problem bringing up mucous. The worst time seems to be in the morning. I have a couple questions: Is this common with COPD and what is the best way to get rid of the mucous?

-Stuffed Up

Dear Stuffed Up,

Mucus is indeed a problem for many who have COPD especially if you have a chronic bronchitis component with your COPD. It is also not uncommon to have a great deal of mucus in the morning. Oftentimes, the mucus will settle either high up in your lungs or seem to be blocking your airway. Until you are able to clear this mucus, your breathing will suffer and most often you will experience a lack of energy (as if anyone has a great deal of energy in the morning).

It is important to try and thin out the mucus in order to make it easier to bring up. If mucus is allowed to thicken it could form mucus plugs that may block off portions of your small airways. You should talk with your doctor about the possibility of using a product like Mucinex (which is available over the counter but can be prescribed in higher strength). Drinking lots of water throughout the day can also help thin out the mucus (always check with your health care provider before increasing fluid intake as it may affect your heart). A simple method some have found helpful is to drink something very cold followed by something very hot first thing in the morning to help loosen the mucus clog.

If you are like many folks with COPD, you may not have enough strength to cough up the mucus especially in the morning. If this is the case, there are a variety of mechanical assistance devices available to make mucus clearance a little easier with less effort on your part. These devices are divided into two categories: internal and external.

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This article was reviewed by Senior Director of Community Engagement and COPD360social Community Manager, Bill Clark, as well as certified staff Respiratory Therapists on February 5, 2020.

Dear COPD Coach,
My husband has COPD, is on oxygen and was diagnosed about two years ago. Since he started using oxygen he sits all day in his chair and expects me to wait on him “hand and foot.” We are both in our early 70’s. He calls for me to bring him something to drink or eat, and even to bring him his paper or reading glasses. Just the other day he wanted me to swat a fly that was bothering him. I understand he is not able to do all the things that he used to, but he is just exhausting me! I know he can do more than he is letting on because every afternoon he grabs his oxygen tank and takes off in his car to hang around with his friends for several hours. After he gets home, it is back to the chair and me having to constantly wait on him. I want to be a good caregiver but I am frustrated. What should I do?

-Tired Caregiver

Dear Tired,
Ok, this question kind of makes me feel like Dear Abby, but in any case, here are my thoughts.

Individuals who are diagnosed with COPD often become somewhat depressed, and instead of doing the things they are still able to do, they choose to do nothing. The worst thing that a person with COPD can do is become inactive. In fact, many COPD patients strive for some degree of independence adjusting how they go about tasks while learning to ask for help with those tasks they are no longer able to do.

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This article was reviewed by Senior Director of Community Engagement and COPD360social Community Manager, Bill Clark, as well as certified staff Respiratory Therapists on February 5, 2020.

Dear COPD Coach,
I was diagnosed with COPD about 5 years ago. My doctor has just prescribed the use of supplemental oxygen. What do I need to do next?

-Looking to Breathe

Dear Looking,
The first thing you should do is discuss with your doctor what type of delivery system is best for you. This discussion should include addressing your needs not only at home, but also when you are out and about. Be sure to document your discussion. Your doctor will then provide a certificate of medical necessity indicating that you require supplemental oxygen and what equipment you will need. Make sure this certificate of medical necessity contains all of the items you discussed.

Your second step is to identify an oxygen supplier that is able to address the needs set forth in the certificate of medical necessity. Know that your oxygen supplier is not your doctor and cannot make decisions about the type of equipment you require- only you and your doctor may do this! Once you are provided equipment, you generally cannot change the type of equipment or type of delivery system for a term of five (5) years. Note: if your oxygen requirements change, your certificate of medical necessity should be updated. Your oxygen supplier is obligated to provide equipment that fits that need with a new certificate of medical necessity.

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This article was reviewed by Senior Director of Community Engagement and COPD360social Community Manager, Bill Clark, as well as certified staff Respiratory Therapists on February 5, 2020.

Dear COPD Coach,
I was born with lung “issues” growing up, and doctors told my parents I had asthma. Over time my breathing just kept getting worse. As a result, I have never smoked a single cigarette, and I have never been around people who smoked. In 2009 I was in the hospital for pneumonia and doctors took x-rays and CT scans of my lungs. Soon after they dropped the bomb – I had COPD. I was born in 1977, and always thought COPD was a disease that only affected people in their 60s and 70s. I was tested for Alpha-1 and the results came back "abnormal." How rare is for a non-smoker my age to have COPD?

-Perplexed

Dear Perplexed,
It is far more common for young people to be diagnosed with COPD than ever before. This is due in large part to more awareness of COPD in recent years by both healthcare professionals and the public. COPD has historically been perceived as an "old person's disease," but we are learning this is not always the case. In fact, the average COPD patient is between 45-55 years of age. Oftentimes, symptoms of early lung disease are not recognized by the individual until the disease is much more advanced, even to the point of being debilitating later in life. It is very easy to justify our symptoms by thinking we are out of shape, prone to colds and flu. Most often, we become great compensators, and if we get out of breath doing an activity, we make sure to avoid that activity in the future. The truth is that the earlier COPD is diagnosed and treated, the better the prognosis!

Alpha-1 Anti-trypsin Deficiency is one cause of early diagnosis for COPD. Alpha-1 is a genetic form of COPD caused by producing too little anti-trypsin, no anti-trypsin, or a mutated version of anti-trypsin (which often causes liver problems). Anti-trypsin is a protein produced in the liver that travels through the bloodstream and protects our organs from the effects of other proteins, particularly the lungs. The absence of or reduced amount of anti-trypsin can result in early emphysema.

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This article was reviewed by Senior Director of Community Engagement and COPD360social Community Manager, Bill Clark, as well as certified staff Respiratory Therapists on February 23, 2020.

Dear COPD Coach,
If I follow my treatment plan, how much lung capacity should I expect to have on an average day?

-Strengthening the lungs

Dear Strengthening,
Generally, once lung function is gone, it is gone for good. While we cannot control this factor, we can control how efficiently our body is able to utilize our remaining lung capacity. A regular exercise program builds our muscles to a point where they work more efficiently and therefore require less oxygen, which in turn causes us to be less out of breath. I know that exercise for many is very daunting and frightening. Let’s face it, when you are having a hard time breathing, the last thing you want to think about is exercising! Even if you have more advanced COPD, there are simple exercises that will not only improve your breathing, but also your overall health. For those with very limited mobility, there are simple chair exercises that can really make a difference. Talk with your doctor or respiratory therapist about exercises you can do that are safe, comfortable and effective for you.

Your lung function can actually vary during various times of the day. Some experience more breathlessness in the mornings while others have difficulty at different times during the day or evening. If you need to do a pulmonary function test, schedule the test at a time when your breathing is usually better. Also, do not schedule a routine pulmonary function test when you are feeling ill or are recovering from an exacerbation.

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This article was reviewed by Senior Director of Community Engagement and COPD360social Community Manager, Bill Clark, as well as certified staff Respiratory Therapists on February 23, 2020.

Dear COPD Coach,
I have been living with COPD for several years and find that it is getting harder to breathe. This is making me feel very stressed, and I think the stress alone is making my symptoms worse. Do you have any advice on how to stop it?

-Stressed

Dear Stressed,
The mechanism you are referring to works something like this. You have difficulty breathing or get out of breath and breathing become stressed, which in turn causes even more difficulty breathing, which then causes more stress — until it spirals out of control. There is probably no worse feeling than not being able to breathe!

The progression of COPD along with breathing difficulties is often slow, but in some cases progresses more quickly. Adapting to this change can be difficult and might require some action on your part. When you start feeling anxious or stressed, give yourself a “time out.” Sit, relax and try pursed lips breathing until the stress or anxiety passes. You might also try taking your mind off your breathing by reading or watching a movie or TV show.

If you still are not able to control the stress and anxiety, you might consider talking with your doctor about medication to “take the edge off” the stress and anxiety attacks and help you cope better.

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This article was reviewed by Senior Director of Community Engagement and COPD360social Community Manager, Bill Clark, as well as certified staff Respiratory Therapists on January 23, 2020.

Dear COPD Coach,
I have COPD but do not yet require supplemental oxygen. I am planning to fly to visit my son. The flight is scheduled to be two legs, one lasting 1 hour and the other two hours. Is it safe for me to fly even though I do not use oxygen?

-Ready to Travel

Dear Ready,
Your question is a very good one! Like most of the questions we get, the answer is not simple, and the short answer is a definite "maybe." I'll explain.

In all commercial air travel, the planes are pressurized. How much they are pressurized depends on the size of the plane and the altitude it at which it flies. Most large planes flying above 30,000 feet would be pressurized to an altitude of up to 8,000 feet. To give you some perspective, the altitude of Denver is 5,300 feet and has about 17% less oxygen than cities at sea level. The smaller regional jets generally fly around 20,000 feet and thus usually are only pressurized to around 6,000 feet.

At any pressurization, people with normal lung functions will usually measure a drop in their oxygen saturations, especially on long flights. On the other hand, someone with compromised lungs will usually experience a substantial drop in their saturations. For a person with normal lung function, the worse they will suffer is sleepiness but usually recover their saturations very quickly afterthey land. A person with breathing difficulties will most often experience head and muscle aches, saturations below 90 and require a significant time to recover their oxygen saturations once they land.

Since there are no readily available tests to determine how you will fare in flight, it will require a guess on the part of your pulmonologist. A test has been developed using a formula using an algorithm based on a study of 100 COPD patients with moderate to severe COPD. While the results tend to over-estimate the number of patients requiring in-flight oxygen, they are considered a safe “estimate” as to who can safely fly.

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This article was reviewed by Senior Director of Community Engagement and COPD360social Community Manager, Bill Clark, as well as certified staff Respiratory Therapists on February 23, 2020.

Dear COPD Coach,
I have severe COPD and find it hard to walk for long distances. I saw an ad on television that says some company can get me a scooter paid by Medicare. The ad says if Medicare does not pay for it, it is free. This sounds a little too good to be true. What do you think?

-Questions About Scooters

Dear Questions,
The short answer to your question is that it is too good to be true! What these ads actually say is that if you are approved by Medicare and your claim is later denied, you pay nothing for the scooter. The reality is that Medicare does not pay for mobility scooters. Medicare will at times pay for a motorized wheel chair to allow you some degree of mobility in your own home, but in order to qualify your ability to walk must be severely compromised.

There is a big difference between a motorized wheelchair and a mobility scooter. Mobility scooters are designed for outdoor use, are generally lighter in weight, easier to transport and have longer battery life. The design of the mobility scooter allows it to operate over a variety of terrain. Motorized wheelchairs are primarily designed to operate indoors. They tend to be quite heavy. In order to use a motorized wheelchair indoors, your house must have wide enough doorways to get from room to room. Motorized wheelchairs are not really useful in two story houses. In order to get the wheelchair outside, ramps are usually required. Since they do not break down for transport, you must have a lift on the back of your car. The fact is, because of their design, many people cannot make use of a motorized wheel chair.

There are companies out there who put out ads similar to what you saw on TV. When you call they send a salesman to your home who will get you to sign a contract that in effect says if Medicare does not approve the claim you agree to be responsible for payment. Since Medicare will most likely deny the claim, you will end up being responsible for the payment. The payment plans in many cases involve very high interest payments, and in the end you will have paid far more for your scooter than if you had bought it from a local retailer. Before signing any contract with these companies, enlist the aid of a lawyer or competent legal authority to advise you of just what your obligations would be.

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This article was reviewed by Senior Director of Community Engagement and COPD360social Community Manager, Bill Clark, as well as certified staff Respiratory Therapists on February 23, 2020.

Dear COPD Coach,
I recently heard the term top breather. What does this mean?

-Breath Question

Dear Breath,
The term top breather is a term that indicates an inability to take deep breaths; breathing in a way that seems to use only the top parts of the lungs. This is somewhat common in people with COPD. It occurs because of hyperinflation of the lungs which does not allow us to expel all the air our lungs are holding.

When our lungs are hyperinflated (over inflated or too large) we are only able to expel a small amount of air, which in turn means that we can only take in smaller amounts of air. The problem with this is that the air in the lungs that remains trapped becomes “stale” and therefore not able to keep up our oxygen levels. Top breathing especially becomes a problem when we get short of breath and breathe rapidly because we’re hungry for air. The other problem with top breathing is that it can result in a retention on CO2 further triggering the feeling that we are short of breath. Because top breathing takes less effort, it is very easy to fall into doing it regularly which in turn causes problems with our oxygenation.

It is very important for a person with COPD to practice breathing techniques to optimize the amount of oxygen our injured lungs are able to process. Some of these techniques might be familiar to you, but always worth mentioning. Be advised that the following is for information only. Always consult your healthcare professional before starting any new technique or exercise.

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