Myths about COPD

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Stephaine Williams

Stephanie is a Registered Respiratory Therapist who enjoys educating, informing, and empowering people living with COPD and their families. As the Director of Community Programs, she is engaged with patients, caregivers, and healthcare professionals to improve the understanding and awareness of COPD.

For newly diagnosed patients with chronic obstructive pulmonary disease (COPD), it can be a scary and overwhelming time. At the COPD Foundation, we want to provide you with the most up to date and accurate information about your diagnosis. We asked our 360social community to share with us some common myths about COPD they have heard, so we could address these in a blog series.

Myth #1 - “If you are diagnosed with end-stage COPD you only have a short time to live”

Medicine has done a disservice to people living with COPD by labeling people as being ‘end stage’. Saying this about someone makes them feel as if their life is over or that they are moving full speed toward their death.

The fact is, when people are given a diagnosis of COPD, whether the words ‘end stage’ are mentioned or not, they often feel that their life will never be the same.

Remember how you felt when you were told you have COPD? What did that feel like? Overwhelming? Did you feel like you were in for the fight of your life? Like it wasn’t worth fighting? Depressed? Anxious?

All these feelings are normal, and when we have people newly diagnosed on 360Social, or are talking to their family members, we must remember what that felt like.

Just on COPD360Social alone, we have dozens of people who have been told they are ‘end stage’ who have been living productive lives for many years.

It is true that COPD progresses faster in some people than in others, but being proactive about your health, getting exercise, taking medications as prescribed, and avoiding triggers all play a big part in maintaining good health and quality of life. In summary – end stage is a terrible misnomer. Don’t let it get in the way of doing the things to keep you on the right track.

Myth #2 - “Patients on oxygen can become addicted and dependent on it”

It is likely that if you are prescribed oxygen, your tendency will be to try and limit your use or try to avoid using it so that you “don’t get addicted” to it.

The truth is that every living person on this planet is “addicted”, but people who have been prescribed supplemental oxygen just need it at a higher level than others.

A true addiction is like this: when you do something that makes you “feel good”, a chemical called dopamine is released in your brain. This part of your brain is called your “reward center” because when you do something like that, the dopamine levels make you feel good. This reward system also makes you crave the item, drug or activity.

Using supplemental oxygen does not affect the reward center in any way. There is no rush of dopamine to make your body crave it in the way you might crave nicotine or caffeine. It just isn’t that way.

Using supplemental oxygen simply increases the available oxygen that you are breathing in, making the oxygen molecules easier for the lungs to breathe in and making it easier for the blood to pick up and transport.

Not using oxygen as prescribed can put extra burden on the heart – making it work harder to meet the oxygen needs of the body. It makes it hard on the brain, too – since it needs oxygen to think clearly, keep up energy levels, and keep body systems functioning well.

Myth #3 – “The damage has already been done to my lungs from smoking, so why bother quitting” And another related myth - “If you stop smoking, COPD is gone.”

This is a common misconception. Smoking Cessation is very important.

Stephaine Williams

There is research that shows how continued smoking causes the lungs to worsen faster than if the person quits smoking. Part of the problem is that the smoking will cause more frequent exacerbations earlier than they would normally occur. With every exacerbation, the lung function decreases a bit. The worse the exacerbation, the more the decrease. The person’s ‘normal’ or baseline gets set lower each time. It is important for all smokers to stop smoking – even if there are no signs or symptoms, but it is critical for COPD patients to quit.

Along these lines – even if a person quits smoking, the damage is done. Further damage to the lung tissue can be prevented, but it doesn’t ever heal itself.

Another thing is that smoking makes it harder for your body to heal. Nicotine is a vasoconstrictor, or an agent that makes the blood vessels narrower and it keeps nutrients from being readily available to the skin. Have you ever noticed the skin of a long-time smoker? There is often wrinkling, dry skin, etc.

This same vasoconstriction limits the availability of white blood cells and other necessary components to heal cuts, or incisions, or even broken bones.

So, you can see that smoking affects more than just your lungs. Quitting smoking can have health benefits throughout your whole body.

There are lots of great tools out there to help you quit- and lots of people on 360Social who can share their tips and tricks to help you quit.

Need help quitting? Check out Quitline, a tobacco cessation service available through a toll-free telephone number. Quitline’s are staffed by counselors trained specifically to help smokers quit. Quitline: 1-800-QUIT-NOW (1-800-784-8669)

14 Comments



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  • Thank you for a great article on debunking popular COPD myths Stephanie!
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  • Well worth taking a minute or so to read this! Thank You Stephanie
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  • Thanks Stephanie for making this much needed series.
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  • Thanks it was definitely worth reading and the reminders.
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  • Although all is quite informative.You give the perception to a person that doesn't have COPD can do the things they normally have done.My FEV1 is 22% of predictive 3.17 ltrs.
    I currently have constant pain in my lungs just to breathe in.Yet in ER I get treated like nothing is wrong.
    So now that when someone is diagnosed with COPD.It seems like it is the go to diagnosis and it is looked at and seems to be considered like the flu.Not the serious disease that it is.
    It is only the third leading cause of death in America for God's sake.
    While it is true that cigarette smoking is most likely the culprit for many.There are very many other causes of COPD that aren't focused on A-1 for example.Which can easily be detected by blood tests.
    More lifestyle changes need to be discussed ie;diet and air quality.
    Lungs are one quick movement.
    Breathe in Breathe out.
    Anything other than than that.
    You should see an Doctor.
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    • I am sorry for your severe disability. I just wanted to thank you for giving us a patients' perspective. Having been involved with providing pulmonary rehabilitation for many years, I have seen many patients with severe COPD improve their quality of life and outlook by practicing good preventative and maintenance activities. Even though you live with pain daily, I hope life is still good. Best wishes.
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    • Hi guy,
      Thank you for your comments.
      Medicaid will not pay for pulmonary rehab because there is no proof that that it extends life.
      Dick Cheney can get an heart.Long after someone who isn't Dick Cheney wouldn't quality.
      When me at 57 can't get pulmonary rehab when all who know anything about COPD.
      Pulmonary rehab helps dramatically with the quality of life.
      One could conclude that if quality is improved.So would quantity.
      Not assume but conclude.
      With all the different things taught to an patient in pulmo.rehab.
      With over 1/2 million people dying each year from this disease.Also they are dying younger.
      Something needs to be done to fix this.
      With the Trump administration's stand on pre-existing condition.There are a lot more people going to die than not.
      I have already been informed by United Health that they will no longer cover my Symbicort after Dec 31st,2018.
      This is what is really happening to people.This is not a myth.
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    • RE: Symbicort -go to alldaychemist.com and search on Symbicort - you will find Foracort manufactured in India. It is Symbicort from India. Since my insurance stopped covering my Spiriva last year I turned to All day Chemist after seeing it recommended on a copd discussion board. All day chemist is a reputable company. They are not selling fake drugs. Prior to this my copay for Spiriva was $100 per month. At All Day Chemist I can get a 6 month supply for the same amount. It's cheaper than my former co-pay! Plan ahead, shipping sometimes takes 2 weeks. A Foracort inhaler is $8.98 on their website. Their Rotocaps are .23 per cap. With my Spiriva I've found the Indian version (called Tiova) works just as well as the US version. I just continue to use my old Spiriva inhaler device because it is far easier to use than the Indian version. I'm sure their version of Symbicort is also authentic. I talked to my pulmonologist and he approved of the substitution and admitted that when he goes home to Central America he stocks up on his asthma inhalers because of there low cost there. Also - ADC will ask for a prescription but just ignore that page - they'll fill it without one. Perhaps some on this forum won't approve of Indian drugs being filled without a prescription but on my COPD discussion board they all agree the drugs are the same and when you can't get it here, or the price is unreasonable - you have to get it elsewhere or suffer without it. FYI : My FEV1 is 23%. I too am "end stage". I also agree that you are ignored in the hospital - the reason why is that THERE IS NOTHING THEY CAN DO FOR YOU. At best they admit you for a couple of days and give you ridiculously high doses of prednisone and an antibiotic and then release you. Ask your doctor for a prescription of prednisone - like 100 pills to keep on hand and when you start having trouble breathing then start a 40 mg taper. I take Azithromycin 3 days a week ALL YEAR so I don't need an antibiotic (it's an approved treatment) but if you don't, get an RX from your doctor to keep an antibiotic on hand. Plus during flu season the LAST place a person with COPD should be is in a hospital - way too many germs. I ONLY go to the hospital when my O2 levels start dropping - because then I know it's something I can't take care of myself. I have severe air hunger and take morphine and fentanyl so I used to go to the hospital every time I had a panic attack even though my O2 levels were in the 90's . The two REAL times the hospital was necessary was when I caught H1N1 and another time when (unknown to me) my hose separated from my O2 concentrator and before I knew it my O2 levels were in the 70's and dropping fast. By the time the paramedics arrived and put me on O2 I was barely coherent. Even though I have no heart issues I had a very minor heart attack likely because my O2 levels strained my heart severely. It's the downside of living alone and very frightening. You CAN manage most of your COPD exacerbations yourself IF your doctor is willing to give you the right tools (drugs) to do it with. The fact is you'll recover just as fast as in the hospital and you'll be in a more comfortable environment staying at home where you don't have to wait 2-4 hours to get a breathing treatment - you can just do it yourself. If you don't have a nebulizer - GET ONE and an RX for inhalation drugs (there is a nebulizer version of Spiriva) - assuming you are on Medicare - THEY pay 100% for nebulized drugs (your Plan D doesn't pay a thing) because the drug is for use with a piece of equipment. My nebulizer is my lifesaver.


      Reply
  • JanSC Thank you for your courageous post. Your take on things parallels my own experience. The principle of being prepared and supplied to handle an exacerbation at home, rather than in the hospital is key. I found myself walking into the very things that would ensure a rough go at recovery, even if I didn't pick up a stray bug in the hospital. First, while I started an additional strong antibiotic as soon as I sensed something going awry, I didn't have the prednisone to address the need for an anti-inflammatory. Result, a day or two delay while we see if the antibiotic heads things off. When it doesn't, it is time to head for the hospital but now I am worse, not better. We both know what that entails. You start at the ER, which, in our area, means that you can count on 6 to 8 hours waiting to be admitted. You may or may not be started on an antibiotic and prednisone prior to admission. Then, as you noted, it is spend the next 3 to 5 days waiting for everything in 4 to 6 hour chunks. I have a micobacterial infection (micobacterium avium) in my lungs, so I am on three antibiotics at all time. It is a tough one to kill. When I get started on an exacerbation, I swap my Azithromycin for Bactrim and it seems to do the trick. Now, i need to get the predisone covered. I have a great infectious medicine MD, so I am optimistic.
    Thanks, again, for your candor. TerryZ

    Reply
  • JAN SC,
    Thank you for the information.I learned early in this disease to always have extra meds when able.
    Once learning what my disease was and after my fifth exacerbation.I figured there had to be a different way.
    I was diagnosed in 1999.But it didn't rear its ugly head until 2005.
    Then after that I had several severe exacerbations.
    I lived in Houston,Tx.at the time.
    I was able to learn at a greater pace about my disease because I was fortunate enough to participate in clinical trials.(good idea for anyone).
    I had to leave Texas because personal and health reasons.
    So I came North to my hometown
    Getting used to cold weather has been a challenge but I am making it.
    I was diagnosed at 38.So I have been thru the mill.
    The doctors here aren't professors but they knowledgeable.
    In Jan my pulmonologist is recommending me to Spectrum for a possible new procedure.I am just trying to make it till then.
    I will take your advice to heart and research it thoroughly.
    I used to have different types of antibiotics prescribed but was not an doctor and wasn't trying to be.So I stuck to what I had learned and what I knew to be safe.
    I also for many years learned to eat differently.
    I drank a shake every morning and ate mostly proteins.
    I learned that preserving muscle mass was most important.The last couple years I have slipped.
    I am aiming to get back to that.
    So thank you and may God bless you and all our angels that strive to do their best every single day in helping us to learn more and more about this disease.
    So a little advice to anyone diagnosed with this.
    1)Don't panic
    2)Quit smoking
    3)Learn your opponent.(You are fighting for your life)
    4.Ask questions(Don't assume anything).
    5)Relax and breathe.
    6.Learn,Learn,Learn.
    God bless all.
    One more thing.
    This disease is taxing on your whole system.
    Drink lots of water.Not soda or orange juice.WATER.
    Just as you learn your limits of exercise and exertion.
    You should learn your limitations on diet.You want to prevent inflammation and you want to balance your gut flora.
    Stay active.
    Good luck and God bless.



    Reply
  • Thank you for this valuable information!
    Reply
  • Excellant read! Thnx

    Reply

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