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Find inspirational stories, tips from the COPD Coach, events, and current news on the COPD community blog. Have a question regarding COPD that you would like to share with our community? Contact our COPD Coach. Coaches Corner is aimed at providing information for individuals with COPD to take to your doctor, and is not in any way intended to be medical advice. If you would like to submit a question to the Coaches Corner email us at coachescorner@copdfoundation.org. We would love to hear your questions and comments.

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Archive: January 2016

Should I Speak Up?

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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.

Support 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.

Another important part you can play is with your husband’s medication. For the best possible outcome, it is vital that his medications not only be taken as prescribed, but also taken correctly. A recent study indicated that many patients rarely take their medications when they are required, and that a large number take them incorrectly! Not long ago, a person diagnosed with COPD showed up to one of our lung screenings. She told the respiratory therapist that she felt that her inhalers were totally useless. The therapist asked her to demonstrate how she was using them. She took the inhaler out of her purse, held it to her chest and squeezed it. That might seem funny to some, but the sad part is that it happens all too often.

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Tags: caregiving COPD flare-up doctor's visits Living with COPD questions to ask
Categories: Coaches Corner

Should I Purchase a POC Online?

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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.

Electricity 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.

Once you have settled on a unit you need to decide if you want to purchase new, reconditioned or used. There are a number of units available on the Internet that sell for less than you can purchase them for from an oxygen supplier – often far below suggested retail prices. Many Internet suppliers also sell reconditioned units. These units have been rebuilt with new internal batteries and components and most often come with a limited warranty. They also generally sell for about half of what a new unit would cost.

Buying used units from sites like Craigslist can be problematic. The two most common problems with POCs are the internal batteries needing to be replaced, and the sieve beds (the part of the device that absorbs nitrogen) needing to be replaced. Both of these repairs can be costly. In the case of batteries, POC batteries (including the external batteries) are generally good for up to 250 recharge cycles before they start to lose their capacity. The sieve beds are generally replaced when the internal battery is replaced. POC batteries that are left uncharged for long periods of time also lose their capacity.

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Tags: concentrator cost electricity oxygen portable
Categories: Coaches Corner

A Message to the COPD Community

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You may have seen our posting under the Foundation press release section that the Centers for Disease Control and Prevention (CDC) has just launched a new advertising campaign featuring people living with the results of their smoking. While we acknowledge that COPD is in many cases a result of smoking, we wish to stress that these ads deal more with the consequences of smoking than they do with COPD. While smoking cessation is the best way to prevent COPD, smoking also results in many medical risks other than COPD. Some of the interviews could be considered somewhat graphic and could be disturbing to some. We encourage our membership to exercise their best judgment as to whether these images and interviews might be too disturbing to view. The COPD Foundation is dedicated to helping people live with COPD and improve their quality of life; we also believe that the concept of “shame and blame” doesn’t have a place with those actively trying to improve their quality of life with COPD. Once again we ask you to use your discretion when deciding to view the content of these ads. Thank you.

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Tags: campaign CDC COPD Tips from Former Smokers
Categories: Advocacy

Safety Concerns with Supplemental Oxygen?

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Dear COPD Coach,
I have just been placed on supplemental oxygen 24/7. Up until now I have only used it at night. Are there any safety concerns I should be aware of?

-Scared O2 user

Dear Scared,
Using supplemental oxygen does have some risks associated with it, and you are wise to be concerned. Oxygen itself is not flammable; however the presence of oxygen causes fire or even a spark to burn more quickly and fiercely. So some common sense tips might help ease your concerns.

  • Keep at least 8 to 10 feet away from any flame or spark. This includes gas stoves, fireplaces and yes, even candles. Electric razors (though not widely advertised) can cause sparks, and you should not use your oxygen when shaving with an electric razor.
  • Do not allow smoking anywhere near you. Many oxygen users place a sign on their door stating that supplemental oxygen is being used in the house and that no smoking is allowed. Of course, with lung problems you should never allow any smoking around you or in your home!
  • When cooking, do not wear loose fitting clothes and stay as far away from the heated surface as possible.
  • Avoid using aerosol products as they can ignite in the presence of a spark or fire.

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Tags: concerns oxygen safety supplemental therapy
Categories: All About Oxygen

Embarrassed By My Oxygen

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Dear COPD Coach,
I was diagnosed with emphysema approximately 10 years ago. About 5 years ago my pulmonologist prescribed oxygen therapy for me. It was only 2 liters per minute to start, used almost exclusively at home while I slept or if I became short of breath. As time has gone by my disease has progressed and my use of oxygen has increased. My question is, what can I say when I am out in public or at work when people ask what I am wearing and why? I have to admit I am somewhat embarrassed to be seen in public wearing oxygen since I am relatively young and look pretty healthy.

–Embarrassed by my oxygen in public

Dear Embarrassed,
First of all, I strongly believe there is absolutely no reason to ever be embarrassed while using your oxygen in public. Having said that, I think we all go through the same issues as our disease progresses, and many people have developed different strategies for dealing with wearing oxygen in public. When I reached the stage of using oxygen 24/7 I too was leery of being seen at work with oxygen on. When I told my manager, I made sure he knew what was going on and he said, “Thank God you’re alright, I was so worried about you. Now the company gets to report we have an employee with a disability.” My work took me in and out of doctor’s offices every day,  and when first asked I stated that it was because I have Alpha-1. This more often than not led to a great conversation about Alpha-1/COPD and what they can do to better diagnose patients.

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Tags: awareness cannula embarrassed oxygen therapy
Categories: Medications, Treatments and Therapies

Will I Lose My Oxygen?

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Dear COPD Coach,
I am a “snowbird” in that I live in Florida during the winter and in New England the remainder of the year. I was informed by my oxygen supplier in New England that they will no longer supply me with liquid oxygen, and want to arrange for me to return my tanks when I return (I am still getting liquid in Florida from the same company). Since I live in New England most of the year, the thought of losing my liquid really upsets me. What can I do?

-Liquid User

Dear Liquid User,
You are facing a problem many others across the country share. Presently the COPD Foundation is looking into this issue along with several related problems such as cutbacks on the delivery of compressed tanks and problems involving traveling with oxygen. Liquid oxygen is often a preferred delivery system and can often provide these people far more mobility than they could obtain with compressed oxygen.

The first thing that should be done is to file a Medicare complaint. The easiest way to do this is by calling our C.O.P.D. Information Line at 1-866-316-2673 to reach a trained associate. It is VERY IMPORTANT that anyone who receives a notice of a change in their delivery system file this complaint. The only way the situation will change is to make our voices heard! We will use this information to access what actions we need and can take to make sure that our community is properly served.

When you begin oxygen therapy, your doctor writes a prescription.The oxygen supplier you select then works with your doctor to develop a service plan that addresses the type of delivery system you require, your liter flow both during activity, as well as what you will need for mobility and emergencies. This service plan is required by law and is effectively a contract between you and your supplier, and cannot be changed or altered without your and your doctor’s approval.The provider must also notify you in writing of any “proposed changes” to your service plan.If they are no longer able to provide you your prescribed therapy, they are obligated to work with you to find another supplier who can continue the services specified for you.What they cannot do is to simply show up and announce that the service plan has been changed. This is very important: if you simply allow them to change your equipment you will in essence be allowing them to change the service plan.

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Tags: access doctor Insurance O2 oxygen prescription supplier
Categories: Advocacy

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