COPD360social

For a decade, the COPD Foundation has provided a growing COPD community with resources and education. Now we want to take our work to the next level. We want to hear from YOU daily.

Welcome to our interactive, collaborative community: COPD360social. You can join us and other friends, learn about events in your area, participate in research, chat with the experts, and learn how to take action -- all on your time, at your pace. COPD360social is the COPD Foundation's way of saying 'Thank you' to a community that can make the world take notice of a silent epidemic.

Join COPD360social, because we are stronger when we work together.

Create your COPD360social profile today!

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txmoose

txmooseanswered the question How many airlines in your country let you plug in your portable oxygen concentrator?

Folks I am new to this forum but not to the disease. My wife has had copd fo many years. I am in a battle with the FAA and trying to get my Congressman Lamar Smith to fight for us to get the airlines to provide power for the concentrator. I have a lot of …

1 hour ago

txmoose

txmoosereceived the badge Getting started

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1 hour ago

Mstie

Mstie

I have copd and use advair, nebulizer, and when out Escuela inhaler, I have emphysema since 2 years now and am constantly with Gerd as well which irritates my asthma and really gets it going bad... Right now I am in process of going to respiratory specialists. I am tired of bronchitis, antibiotics , steroids but now am constantly wheezing so I am making Dr. Appt to see if she can help, although zI Will probably end up on steroids again.

4 hours ago

  • MstieSorry, I was switched from advair to Dulera4 hours ago

Mstie

Mstiereceived the badge Getting started

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4 hours ago

RGuillen

RGuillen received the badge Getting started

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4 hours ago

DrP

DrPreceived the badge Getting started

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5 hours ago

Shersmail

Shersmailreceived the badge Getting started

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5 hours ago

Treez

Treezreceived the badge Getting started

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5 hours ago

Endora

Endora

I have Stage 4 COPD and, surprisingly, do relatively well on only inhalers and a nebulizer. I had been exercising regularly at the gym until about a month ago when I experienced an exacerbation from which I am still recovering in terms of sustained physical activity. Some days I can move around easily and do hand weight and cardio exercises at home without difficulty. But many days I am not able to walk any great distance without some breathlessness and a drop in oxygen saturation into the mid 80's. However, I can get it back up into the mid 90's by sitting and using pursed breathing technique. When I shared my concerns with my pulmonologist during a recent followup he was not especially concerned since I had been sick. My blood oxygen in his office was 96 so he said I was not a candidate for oxygen. I have never felt this physically restricted and I am now having what I think are panic attacks--sudden chest tightness, rapid heartbeat, feeling of suffocating after just slight exertion. Are my experiences "normal" considering the exacerbation? I think part of the problem, too, is that both my sisters suddenly died in the same month a year ago and I am still grieving for them.

6 hours ago

    Milton14

    Milton14asked the question: Patient Conferences

    Are there ever any conferences for COPD patients to learn about new research, medications, etc. If so, how can I find out about them?

    6 hours ago

    Endora

    Endorareceived the badge Getting started

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    6 hours ago

    Karen Deitemeyer

    Karen Deitemeyeranswered the question "Lung in a box"

    I Googled it, since I had not heard of it - it's a way to transport lungs from the donor to the recipient: http://www.npr.org/sections/health-shots/2014/02/0...

    7 hours ago

    Sokcap48

    Sokcap48asked the question: "Lung in a box"

    does anyone have any experience with lung in a box

    7 hours ago

    Sokcap48

    Sokcap48answered the question Dr says I have nodules. How serious? I go every 6 months for scan.

    If they are NOT large or odd shaped 6 months is normal. One of mine "looked odd" so my Pulmo ordered a PET scan to rule out cancer then another in 6 months. They also did a scan with contrast to get a better look

    7 hours ago

    BHPC

    BHPCreceived the badge Getting started

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    7 hours ago

    bunnymusic60

    bunnymusic60

    And where is John Walsh?

    7 hours ago

      bunnymusic60

      bunnymusic60

      Hey Bill what is the badge everyone is talking about? Thanks.
      Bunny

      7 hours ago

      • Karen DeitemeyerHi Bunny - when you first join, you receive a badge "Getting Started". Look at your profile and you'll see that you have it. Then you earn more badges as you continue to participate in the site. Good to see you here!!7 hours ago

      bunnymusic60

      bunnymusic60

      I am wondering if the Foundation is advocating when it comes to competitive bidding. I always feel badly when anyone tells me about their oxygen problems. I am still getting liquid because I've been using it for 15 years and it was before competitive bidding. What can people use in its place? My portable lasts 7 hours on 4 lpm and my tanks at home don't need electricity. Isn't there anything comparable for others who want to stay out longer than 3 hours?

      7 hours ago

      bunnymusic60

      bunnymusic60

      I just began reading the vol.12 #2 issue and in the Letter from the Editor-in-Chief I found what I think is an error. She says ". . . 22,000 members from over 100 counties." I'm thinking it should be countries.
      I have offered my editing and proofreading skills over the years and nobody wants them. So I guess I'll just find the errors while I'm reading.
      Smile,
      Bunny

      7 hours ago

        Don36

        Don36received the badge Getting started

        Earned the Getting started badge!

        8 hours ago

        mikedaman

        mikedamanreceived the badge Getting started

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        10 hours ago

        DonnaA (SSP)

        DonnaA (SSP)answered the question How were you diagnosed with COPD?

        OK, one more to the list: I was diagnosed in 2004 by my physician who just happened to be the Chief of Pulmonology and soon became the Chief of the Hospital where we lived. I was staged 4 through spirometery, blood tests, exray and a walking test... …

        10 hours ago

        Mark S.

        Mark S.answered the question How were you diagnosed with COPD?

        I'm going to add my story and you guys need to know that I really want to participate because I'm using probably the crappiest keyboard I've had in my life (!) Oh, how I hate this keyboard! In 2006 I was being fitted for a SCBA respirator by an …

        11 hours ago

        KateC

        KateCreceived the badge Getting started

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        11 hours ago

        Merry

        Merryanswered the question How were you diagnosed with COPD?

        In 2006, age 43, I was walking up an inclined parking lot and had to rest due to shortness of breath. In following weeks I got more short of breath and got a dry cough. My primary care doc thought it was asthma because I've never smoked. But rescue …

        11 hours ago

        tybinka

        tybinkareceived the badge Getting started

        Earned the Getting started badge!

        12 hours ago

        amddew

        amddewreceived the badge Getting started

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        12 hours ago

        Merry

        Merryanswered the question Who knows about Breo Ellipta and Incruse Ellipta

        Caroline, My pulmo switched me from Advair to Breo Ellipta last winter to help me save $$. She got a coupon from the drug rep for 12 months of free Breo. Yep. Free. 12 months. I like the once/day dose like Terry S, but it seems like there is more …

        12 hours ago

        ptmc

        ptmcreceived the badge Getting started

        Earned the Getting started badge!

        12 hours ago

        JamesLippi

        JamesLippireceived the badge Getting started

        Earned the Getting started badge!

        12 hours ago

        southernRN

        southernRNvoted on COPD Hospital Readmissions Reduction Project

        Gave a thumbs up for a repository item in the PRAXIS Resource Repository!

        13 hours ago

        RPlant

        RPlantvoted on The Global Emergence of Unregulated Stem Cell Treatments for Respiratory Diseases: Professional Societies Need to Act

        Gave a thumbs up for a repository item in the PRAXIS Resource Repository!

        13 hours ago

        Ben A

        Ben A

        For the last 18 months, since my diagnosis, I have diligently tried to remain optimistic and positive (which is NOT normal behavior for someone has pessimistic as myself), but I'm having a hard time bouncing back from learning that my exacerbation last month robbed me of 3% of my lung volume. I assume that others ride this same see-saw, with their moods and attitudes toward their illness rising and falling from time to time. How do others deal with similar bad news (cuz I'm not doing a very good job of it these days....)?

        And on a side note, has anyone else lost lung volume with an exacerbation and then regained it after healing fully?

        13 hours ago

        • Bill Clark - Community ManagerI did regain but very slowly.....far more than a month!12 hours ago

        • Mark S.Ben, I deal with bad news by channeling my anger into resolving the problem. Not sure if it helps me but if I don't get over, under or thru something, I'll get around it.
          Something knocks you down - you get back up. I know it sounds easier said than done but it is the only way. Worst thing in this world is to be knocked out cold and still be on your feet so go down but get back up!
          I don't have a clue about the lung volume loss. With the progressive nature of this beast I'd say "no."

          Mark12 hours ago

        • clipperI know this doesn't really help but where I go for PFTs + or - 3% is considered insignificant, no change. It can be caused by any number of things; getting over an infection, you were tired, the dew point, the this and the that. The next time you do a PFT that number might go back up.

          I suggest you let go of the number, cut yourself loose, it is too constraining. Do whatever you can to help yourself; exercise and ice cream.
          11 hours ago

        Mark S.

        Mark S.

        Today was my day to go to the barber shop, lowes and drop a wheel/tire off at the tire guy. Whew!
        Did pretty good dropping the tire off, getting the hair cut but started flagging in lowes.
        I needed to pick up about 10 2x2x8 for an on-going project, oh and an 8' grounding copper grounding rod to ground my tv antenna. By the time I culled thru the 2x2s and loaded up the ground rod and hardware and pushed the dang stuff to the checkout I was ready to call "calf-rope!"
        I cannot believe how humid the air has become in the last 2 days!! I don't think it gets this humid in the tropics - no way.
        I got all that stuff loaded in my car and made a bee line to the house and my nebulizer - that goodness for my nebulizer!
        When my pulmo and I were talking about options and he told me the prednisone and Albuteral/Ipratropium was about all I had right now, I said "Oh, the nebulizer is my LIFELINE!!!"
        Now I'm wondering if I'm expected to pound this ground rod a whole 8 ft into the ground : O
        It'll have to be another day....

        Mark S.

        13 hours ago

        ijc2111

        ijc2111received the badge Getting started

        Earned the Getting started badge!

        13 hours ago

        Kandy

        Kandyanswered the question Nutrition advice for COPD patients when first diagnosed?

        I don't remember anything either pulmo or any of my drs. I had to ask for referral to pulmonary rehab so I guess nutrition is not important either. We have to be on our toes ourselves and figure out what is best for us. The net has all kinds of what …

        13 hours ago

        Kandy

        Kandyanswered the question Goodthing Or Badthing ???

        hack, I agree with you!! Not a good recommendation at all.

        13 hours ago

        Deb57

        Deb57received the badge Getting started

        Earned the Getting started badge!

        14 hours ago

        Cruising George

        Cruising Georgereceived the badge Getting started

        Earned the Getting started badge!

        15 hours ago

        Mendo Bruce

        Mendo Bruceanswered the question COPD & Agent Orange, Agent White and Agent Blue

        I don't know about these substances and COPD but I do know they have been linked to bladder cancer (another smoking disease I had) 70% of all bladder cancer patients smoked but there seems to be an unusual number of non-smoking Viet Nam vets that have …

        15 hours ago

        Mendo Bruce

        Mendo Bruceanswered the question Goodthing Or Badthing ???

        I quit smoking 4 years ago but I am still addicted to nicotine and still using it. I use nicotine lozenges. When I first quit, I used 1 4mg lozenge every hour or two, after a month I went to 1/2 a lozenge (they make 2mg but it was cheaper to bite a 4mg …

        15 hours ago

        clipper

        clipperanswered the question Goodthing Or Badthing ???

        Check out Quitnet.com, a free peer to peer online support group. Like anything else, it has good points and bad. If nothing else it is something to do instead of playing Russian roulette. Call 800-QUIT-NOW, they won't tell you anything you don't know but …

        16 hours ago

        Susan Lewis

        Susan Lewisreceived the badge Getting started

        Earned the Getting started badge!

        16 hours ago

        Kristen Willard

        Kristen WillardSome members have talked before about family identifying changes in their health even before they do. Here is an interesting article on a pilot project at Harvard; family members logged into a system daily to report their loved one's status and symptoms. The hope is they would catch departures from a person's norm (e.g., daily activities) earlier than they might otherwise.

        Would you be interested in your family members engaging in something like this?

        17 hours ago

        Janina K

        Janina Kanswered the question COPD & Agent Orange, Agent White and Agent Blue

        Hi, This is what I found on the web: Agent White is the code name for a herbicide and defoliant used by the U.S. military in its herbicidal warfare program during the Vietnam War. The name comes from the white stripe painted on the barrels to identify …

        17 hours ago

        clipper

        clipperanswered the question How were you diagnosed with COPD?

        I too knew something was very wrong for some time but admitting that would mean I had to quit smoking. One morning walking from my bedroom to the bathroom I had to lay down on the hallway floor to rest. I was so exhausted after just a few steps I had to …

        17 hours ago

        Nicnaknoo

        Nicnaknooreceived the badge Getting started

        Earned the Getting started badge!

        17 hours ago

        hack

        hackanswered the question COPD & Agent Orange, Agent White and Agent Blue

        what is agent White and Blue. Never heard of them

        17 hours ago

        philoz

        philozanswered the question Goodthing Or Badthing ???

        i agree with clipper. i smoked 2 to 3 packs a day for 44 years. i quit last November, now when a co-worker, customer or family member even smells of smoke i drool and crave a cigarette. it is very hard to stay away from it and keep myself clean. make a …

        17 hours ago

        Jimtex

        Jimtexreceived the badge Getting started

        Earned the Getting started badge!

        17 hours ago

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        Medical Advice

        It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.