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 29, 2020.

Dear COPD Coach,
I don't want to waste your time, but my father has been experiencing trouble breathing, coughing spasms, and loss of consciousness due to coughing. I'm scared, I don't know if he has COPD or not but he's been to the doctor and all they say is that it's just his asthma but it's getting severe. We're hoping he gets tested but he's skeptical about doctors. I'm only 14 and I don't know anything about COPD and I need help please. I don't know if he even has it but my whole family is scared. Please give me some information on this disease and maybe some tips I can give to my dad to help him breathe better. Any help is appreciated, thank you.

Dear Concerned Son,

First of all, you are not wasting my time! You have some very valid questions and concerns! Coughing can be a part of COPD and might be something called chronic bronchitis. Chronic bronchitis causes a person to have to cough a lot often bring up mucus. Sometimes it is difficult to bring up the mucus because it is too far into the lung or too thick. There are medications and medical devices that can help to clear the lungs more easily. As for the coughing until he loses consciousness: when you cough, you raise the pressure in the chest which then interrupts the blood flow back to the heart and eventually to the brain for a short period of time. The result is that the person can become dizzy or pass out. When the coughing stops, the blood flow returns to normal and the brain begins functioning normally. When your dad feels a coughing spasm coming on, he should sit down and breathe as much as he can through the coughing cycle. If he is driving or operating machinery, he should cease the activity until the spasm stops. I know this may sound frightening, but as long as he is sitting or not involved in driving or other activities, he will be fine when the coughing stops.

You are right that he should be tested. He should ask his doctor for a referral to a pulmonary doctor who can help get to the bottom of it. The tests are pretty simple and should be able to tell him if he has COPD or some other condition that might be causing his symptoms.

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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 29, 2020.

Dear COPD Coach,
Why aren’t there more drugs out there for COPD? Other people with COPD that I talk with seem to all take the same medications. Also, I am always hearing about some big advances in research with other diseases, but I don’t hear much about COPD. What is going on?

Looking for Answers

Dear Looking,

This is a topic that is very much a concern for those in the COPD community. However, the answer is not really an easy one to explain, but I will try.

COPD is the fourth leading cause of death in the U.S., and unlike many of the other diseases, the numbers continue to rise. As far as new medications, much of this development depends on research. What is interesting to note is that despite this dubious distinction, COPD consistently gets the lowest levels of research funding. Simply put, without the research, cures and new treatments are slow in coming.

Even with research, drug makers must face many hurdles in order for their product to make it to market. As a part of this process, the drug companies must do extensive trials in order to establish such things as product safety, dosage, side effects, interactions with other drugs, to name a few. In order to conduct these trials, the investigators must establish a protocol and once approved must recruit a cohort, which is a group of patients who are willing to participate. Establishing a trial and recruiting a cohort can be difficult, expensive, and very time consuming. Some cohorts have taken as long as a year to recruit, and often are the biggest obstacle for drug makers to overcome.

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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 29, 2020.

Dear COPD Coach,
My wife has COPD, which appears to be getting worse. One of the things we loved to do was to go to craft fairs, which is much more difficult now. Someone suggested that we get a mobility scooter for her to use. Are mobility scooters paid for by Medicare? Also, I went on eBay and found several for a very reasonable price. Are these worth buying?

—How to Stay Mobile

Dear Mobile,
Medicare most generally will not pay for a mobility scooter, but often will pay for a mobility chair to be used in the home. Be very vigilant! There are companies out there who will claim that Medicare will pay for a scooter or mobility chair. They get you to sign a contract, which in the small print says that if they are not able to get payment from Medicare, you are responsible for the entire amount. This can result in you paying installments for a very long time at high interest rates. Do not sign any contract until you have had it reviewed by a legal professional!

When looking at scooters to purchase, there are some things to keep in mind. Many if not most of the scooters you find on sites like eBay are imported. While they may work for a while, there are no service centers or parts available to fix them if they break down. Scooters (and mobility chairs) are somewhat complex and not usually able to be fixed by the average user. When something goes wrong, the fault is usually electrical and most often requires a replacement part. There are some excellent companies out there who offer quality chairs and scooters that have service and parts available.

The first thing you need to do is your homework.

• Does the scooter have enough range for your intended use? Some scooters only offer a range of just a few miles, while some offer ranges in excess of 20 miles.
• Will the scooter work on the type of terrain you are likely to encounter? Many scooters do not do well on grass or gravel. If you intend to use the scooter on a rough service, generally you will require larger tires and a little more power available.
• Is the scooter stable? I have seen some scooters (usually the smaller compact models) that have a tendency to want to tip over. Believe it or not, many people are injured each year when the scooter tips over. Also make sure the scooter has sufficient weight capacity for it’s rider. Many of the smaller scooters have a very limited weight capacity.
• Make sure that you have the means to transport the scooter. There are a number of good transport options. Rack carriers that mount in a trailer hitch are a good option, but have the limitation of allowing the scooter to be exposed to the elements. There are also vehicle lifts available to lift the scooter into an RV, van or truck. Many scooters are built to be disassembled into several parts. Usually however, this is difficult for the user unless they have a healthy person to do the lifting. Best thing here is to visit a dealer and discuss transport options. If you are not able to transport the scooter, it will not be much use to you!

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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 31, 2020.

Dear COPD Coach,
Hi, my husband is 53 yrs old he was diagnosed with emphysema. He has been smoking for 35 years or so. He wheezes and has a hard time breathing. He takes inhalers but still continues to smoke. We have an 8 month old baby and I feel desperate. I read that the average lifespan with the disease is 4 years and I tremble at this possibility. I have read every article on the subject and I am scared to death about the prognosis. I am scared to have a serious conversation with him because I think he is in denial. How do I approach this situation? What stage is he in?

Please advise me as to what to do. Every time I read an article I get contradictory information. Everything is like a bad dream. I want him to live and see the baby grow, I just don’t know what to do to help him. Thank you.

-Desperately awaiting your response

Dear Desperately,

I am very sorry to hear all you are going through. Unfortunately, it is all too common. I would like to be able to tell you that everything is going to be ok but that wouldn't be totally true.

Let's take this one question at a time:

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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 30, 2020.

Dear COPD Coach,
My doctor prescribed me a new medication and I am now experiencing some sort of allergic reaction. Is this normal? What should I do?

-Better Safe than Sorry

Dear Better Safe,
Thanks for reaching out. It sounds like you may be experiencing an Adverse Drug Reaction (ADR) to your new medication. There are a number of ways an individual can experience an ADR, and most are not related to allergy. Reactions include:

Increased effect of the drug: A drug’s influence can vary from person-to-person, and an appropriate dose for one person may be too strong or weak for another.

Side -effects: All medications have side -effects, but some individuals are more prone to them than others. Known side -effects are listed in patient information, with the most common at the top of the list.

Drug interactions: Some drugs combinations can result in serious health consequences and should never be taken together. Most drugs interactions, however, are less severe and only result in adverse symptoms in a sub-set of patients.

Allergy: While uncommon, individuals may experience and allergic reaction to their meds. If you are concerned, ask for a small test dose of a new drug before you are given the normal amount. You may want to reach out to an allergy specialist who has experience in this area.

Consult with your doctor if you believe your medications are at the root of your symptoms. A medical professional is the only person who can appropriately determine whether your newly prescribed medication is causing you injury.

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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 30, 2020.

Dear COPD Coach,
I have just been diagnosed with COPD. I have suffered with GERD for 25 years and had Nissen wrap surgery (surgery for GERD when other treatments fail) 20 years ago. Surgery helped for awhile, but I still struggled with GERD while experiencing new COPD coughing symptoms with difficulty in breathing. I instinctively lied down on the floor with my head elevated. It seemed to slow the coughing and the sense of mucus dripping in my chest. Is there any validity to this or I’m just hoping?

Thank you,
—COPD and GERD

Dear COPD,
COPD and GERD (Gastro-Esophageal Reflux Disorder) often occur together. Research shows that people with COPD are at far greater risk of developing GERD, and almost half of those with severe COPD also have GERD.

GERD is a digestive disorder in which the valve that keeps stomach contents inside the stomach allows stomach acids to get up into the esophagus. The disease can easily complicate your COPD symptoms. These acids are very irritating to the linings of your lungs. It is thought that GERD develops in people with COPD because they have trapped air in their chest cavities, which may then increase pressure on the abdomen, which leads to gastric reflux. It is also thought that some of the medications used to treat COPD may impair the lower esophageal sphincter which is the valve that keeps acid and food in the stomach.

According to Dr. David Mannino, one sign that the acid reflux of GERD could be affecting your lungs is if you wake up in the middle of the night gagging, especially with a sour taste in your mouth. Heartburn, coughing more frequently, coughing up mucus, and having even more trouble catching your breath all indicate that GERD is likely making your COPD symptoms worse.

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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 30, 2020.

Dear COPD Coach,
Is there any scientific study to indicate that stem cell therapy can have a positive outcome in the treatment of COPD? I have COPD and this procedure has been suggested to me as a possible treatment.

-Curious about stem cell

Dear Curious,
The is absolutely no proof that these “stem cell” treatments work - or more importantly - are safe. The individuals who run the clinics claim they are conducting clinical trials, however, clinical trials don’t charge and these “trials” are not approved by the government.

Insurance does not cover the treatment, and it is VERY expensive. The administrators initially charge you a price of a couple thousand, and when you don’t show improvement (which you won’t), they tell you that you need more treatments at several thousand dollars each.

Then there is a question of safety. Most of these clinics claim they remove stem cells from one part of your body and then transplant it. I studied one of these clinics where the operators were advertising that they would help other clinics up by selling them a book with all the info they needed to perform procedures! No reputable university, research facility, medical organization or doctor endorses or recommends this therapy, and the FDA is investigating these clinics.

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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 31, 2020.

Dear COPD Coach,
What can I do if I can’t afford Pulmonary Rehabilitation? What are my options?

–Exercise Options

Hi Exercise,

Many people in our community face that same obstacle, and there are some alternatives available to you! While going to a Pulmonary Rehabilitation program is by far the best alternative, you can always exercise from home whether you are chair-bound or able to walk about.

First , it is very important that you check with your doctor and get an official OK for exercise. If you do, a great place to start is with the COPD Foundation’s PCG (Pocket Consultant Guide) App available through your app store. It is a free tool that has a section containing exercise videos that are geared toward those living with COPD. Another resource you might consider is the Sit and Be Fit program which is also specifically designed for COPD.

Walking is one of the best exercises you can do. It’s easiest if you have a good, safe path for walking or, if weather is a problem, a good indoor location. Shopping malls often have regular walking clubs to help folks get exercise and enjoy being with others. If it is OK with your doctor and if they have given you instruction, you might obtain a pulse oximeter so that you keep track of your oxygen saturation when walking about. It may seem easy to use a pulse oximeter, but you must understand how to interpret the numbers in order to exert yourself safely!

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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 30, 2020.

Dear COPD Coach,
I recently purchased a portable oxygen concentrator. As you probably know, it was an expensive purchase. It is very important that it last for a long time because I will be paying for it for a long time. What advice would you give to make it last?

POC Buyer

Dear POC Buyer,
I was very happy to find your letter as it addresses a very important topic. As you said, the purchase of a portable concentrator can be an expensive proposition for many, and there are some definite things you can do to help keep it in good shape.

Here are some basic tips:

• The unit and supplemental battery must be immediately charged after each use. Do not allow the unit or batteries to remain un-charged for any length of time.
• The unit must not be exposed to any environment with tobacco smoke, wood smoke, or chemical fumes. The unit will pick up the odors and it is next to impossible to clean the order out!
• The units are fragile. Do not drop or handle roughly! Take particular care in plugging in the AC adapter and your cannula, as these connection points are easy to break!
• When you clean the unit, use a slightly damp cloth, and do not use strong cleaning products on it.
• Check your manual to see where the filter is located, and if the filter is able to be cleaned or replaced. In either case, follow the manufacturer’s recommendations on cleaning and replacement.
• Keep the unit stored in a safe and clean location.

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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 30, 2020.

Dear COPD Coach,
My husband was told he has COPD about three years ago. During his doctor’s visits when asked how he is doing, he always insists that he is fine. The fact is he is not doing fine. Should I tell the doctor my concerns or just stay quiet?

Concerned Caregiver

Dear Concerned,
The role of the caregiver is never easy, but the fact is that the caregiver is an integral part of treatment process. The caregiver can provide the doctor with valuable information that could very much help to improve the treatment outcomes. So, the answer to your question is “yes” – you should voice your observations and concerns.

Oftentimes, the person with COPD is either unaware of various concerns or symptoms or in some cases is in denial. The purpose of the doctor’s questions is to determine if the present therapy is effective, and if not, what other therapies might be more effective. If the doctors do not have the type of information you as a caregiver can provide, then your husband might well not be getting the best treatment!

As a caregiver, it is also important that you become educated on the different facets of COPD. What you learn will not only make your efforts more productive, but can in many cases help ease the burden that you might be experiencing. Since diet and exercise are also an important part of the treatment process, your knowledge in these areas can improve your husband’s overall health and help in mobility issues.

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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 30, 2020.

Dear COPD Coach,
I am unable to get approved through Medicare for a portable oxygen concentrator. I was looking to purchase a used unit on the Internet. What do I need to worry about when buying one this way?

–Looking to buy

Dear Looking,
You do have some options for getting a used portable oxygen concentrator (POC) just as there are some pitfalls that need to be considered. So with that said, let’s get started.

Just because you find a POC that you can afford, it doesn’t mean that it is the correct unit for you. Portable oxygen is NOT a one size fits all proposition! So the first thing to do, whether you are are buying new or used, is to do the homework to find out what units on the market will work best for you. Nothing could be worse than for you to end up with a unit that does not fully saturate you! To get this advice you need to talk with your pulmonologist, oxygen supplier, and visit the various manufacturers’ websites. You need to find a unit that not only saturates you, but also accommodates your lifestyle — 1.) lightweight enough for you to transport, and 2.) offers enough reserve capacity to address your needs during exertion, exacerbations and worsening of your breathing.

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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 30, 2020.

Dear COPD Coach,
I was diagnosed with COPD last week. There is still so much for me to learn and figure out. What lifestyle changes will I need to make?

–Changes

Dear Changes,
You are right in saying there is a lot to learn. The more you are able to learn, the more you will be in a better position to manage your COPD. COPD isn’t a death sentence, but it certainly requires a lifestyle change.

• Avoid strong chemical odors. This would include strong cleaning solutions, solvents, perfumes. Also avoid pollution, pollen, wood smoke, dust and anything that irritates your lungs.
• If you smoke, quit! Avoid second- and even third-hand smoke.
• Take your medications as prescribed.
• Eat a balanced diet and avoid foods that cause you to feel bloated. Try eating several small meals throughout the day and avoid large meals.
• Exercise is very important for COPD management. By keeping your muscles toned, they require less oxygen and therefore you will not get out of breath as much during exertion. (Speak with your doctor or respiratory therapist about what exercise would work best for you).
• Avoid sick people, and when out and about, wash your hands regularly. If necessary, carry a small bottle of hand cleaner. Wearing a mask when out among large groups of people is always a good idea.
• Try to stay indoors during high pollen or high pollution times. Also avoid going out in extreme heat or cold, as you may experience difficulty breathing.
• Get educated! Learn to spot the signs of an exacerbation (times when your breathing becomes worse) and contact your doctor before it becomes serious.
• Use your supplemental oxygen as prescribed.
• Get involved with a local COPD community support group.

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