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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tom  goeman

tom goeman

mostly resting. had problems on Friday. we tried dinner plus a trip to casino. I got exhausted.

2 hours ago

    BillHoward

    BillHowardreceived the badge Getting started

    Earned the Getting started badge!
    TDAJunzieMAMOand 24639 others also received the badge TDAand 24641 others also received the badge

    3 hours ago

    judg69

    judg69answered the question Has anyone referred to you as being in "End Stage" COPD?

    It is absolutely essential that you remain totally positive between the ears! Because you can do it!
    AnamCara74DrewgeeHIcopdand 18 others also answered the question AnamCara74and 20 others also answered the question

    4 hours ago

    rnvent

    rnvent

    Thank you, Bill for the friend request. My husband (79) has been living with COPD for 10 years, managed by our GP. I am an RN RCS independent provider, I work with ventilator dependent patients but I am the first to admit I do not know everything! Our GP recently retired and at my husband Dan's last visit with him a few weeks ago our GP gave him a referral to a pulmonologist telling him that if he can't get an appointment with our new GP in a timely manner he should see this doc. Ok, first clue, he was able to make an appt with him within one week. He saw the doc this last Thursday. Appointment was at 1:45pm. I normally attend "first visits" with Dan because he doesn't always understand "medical speak" but I was scheduled to work Tues, Wedns, Thurs nights (11pm-7am). I told him that if he didn't understand something, to have the doc write things out. Oh my word. I woke up at 6pm, Dan was not home. Checked my text messages and Dan said they sent him over to the hospital for a stat CT to check for pulmonary emboli. I called him immediately and he said he was still waiting, he got there at 2:45 and 20 people had come and gone and he was still waiting for his scan. So much for "stat". Then he told me about the nightmare he endured at the doctor's office. He has always been on 2 liters O2 concentrator at home and portable tanks when he is on the go. His SpO2 usually runs around 87 at rest, with activity he has some difficulty but he will rest and recover in a matter of minutes. He saw the doc for 10 minutes. Then the nurse had him walk approximately 40 feet with no O2 and SpO2 dropped immediately to 70's (which is what I would expect) but then with no rest she had him do the same with 2 liters then 3 liters then 4 liters then 5 liters then 6 liters with NO rest in between. I'm sure his anxiety level was through the roof and he had not eaten since 11am. He finally just could not do it anymore. He told me the "nurse" said that by state law they had to have his DME take awa ...

    5 hours ago

    • Bill66State Law?2 hours ago

    • Karen Deitemeyerrnvent - I'm so sorry that your husband was put through all of that - your post got cut off because it was too long, but I think what you were saying is that the new pulmo's nurse was going to have his oxygen removed? As you know, during a 6-minute walk test, if the patient's saturation drops to 88 or below, they are eligible for portable oxygen for exertion. So - if I were you, I'd find another pulmonologist immediately. Can you get into the new GP's office soon?

      2 hours ago

    judg69

    judg69answered the question Flutter device, does it work ?

    used aerobika in hospital during major flare. Did seem to help somewhat in bringing up phlegm
    LouanneBill66Orlanand 4 others also answered the question Louanneand 6 others also answered the question

    5 hours ago

    Kandy

    Kandyvoted on COPD SHUTTLE COMING TO JOHNS HOPKINS BAYVIEW MEDICAL CENTER

    Cares about a press release!

    11 hours ago

    Kandy

    Kandyvoted on COPD Foundation Establishes JW Walsh Memorial Fund

    Cares about a press release!

    11 hours ago

    Bill Clark - Community Manager

    Bill Clark - Community ManagerShuttle at Mets game

    13 hours ago

    Karen Deitemeyer

    Karen Deitemeyervoted on COPD Foundation Establishes JW Walsh Memorial Fund

    Cares about a press release!

    15 hours ago

    Kandy

    Kandyvoted on Shuttle Coming to Las Vegas for AARC Conference, December 6-8

    Cares about a press release!

    1 day ago

    Kandy

    Kandyanswered the question Symbicort and Muscle Cramps

    I also take Co q10!!
    philozMariposaFloridateacherand 2 others also answered the question philozand 4 others also answered the question

    1 day ago

    Bill66

    Bill66

    If you search deep into COPDFoundation, there's some really good posts, past question's etc... hit the search tab and type in some words like COPD, breathing, lung's, there is a vast amount of info.

    1 day ago

      Bill66

      Bill66Does anyone know if this is still in service?

      1 day ago

      Bill66

      Bill66voted on COPD SHUTTLE COMING TO JOHNS HOPKINS BAYVIEW MEDICAL CENTER

      Cares about a press release!

      1 day ago

      Bill66

      Bill66voted on BEVESPI AEROSPHERE‚ĄĘ approved by the US FDA for patients with COPD

      Cares about a press release!

      1 day ago

      Joshua59

      Joshua59commented onQuestions about Portable Oxygen Concentrators

       Do pulse concentrators work with trach patients (I'm assuming they don't)?...

      1 day ago

      HIcopd

      HIcopdHere's a short snippet on Medicare weight loss coverage.

      https://www.medicare.gov/coverage/obesity-screening-and-counseling.html

      Another way it may be covered is as part of pulmonary rehab, where you may have talks from dietitians and similar experts.

      2 days ago

        arlene epstein

        arlene epstein

        Will medicare pay for a nutrionalist for weight loss for COPD? Anyone know?

        2 days ago

          HIcopd

          HIcopdUltimate Pulmonary Wellness Book ‚Äď Dr. Noah Greenspan, DPT, CCS, EMT-B
          Free online book! Enjoy! Lots of practical tips and information.

          https://pulmonarywellnessbook.com

          2 days ago

          Karen Deitemeyer

          Karen Deitemeyer

          I slept late this morning, after getting up at 5:45 AM yesterday to go to The Villages (a 3-hour drive) for an educational seminar. Dr. Catherine Keller, Radiologist, spoke about CT's and lung maps and Dr. Balingit, Pulmonologust, spoke about COPD in general.

          Gretchen McCreary, Research Coordinator, gave a great presentation on the Foundation's website including the PPRN and COPDSocial.

          I was very glad to meet Gretchen and hope that many of the people in attendance will be joining us.

          2 days ago

          judg69

          judg69

          3rd day back home after 9 days in hospital w major COPD flare

          2 days ago

          Richardmacdonald243

          Richardmacdonald243

          I received a friend request from you but it appear you have plenty of friends and I prefer just a few friends at most and smaller groups to share with.
          Being new to this site I am still having problems navigating this site. I do appreciate your thoughtfulness.

          2 days ago

            Richardmacdonald243

            Richardmacdonald243answered the question What's Best?

            I drink a lot of lemonade [carton] and add 2tsp of the concentrate from the green bottle along with a tablespoon of raw local honey when I can find it; or organic ... when I can't. My mucus collects in the throat and scares me because its hard to get up …
            LouanneKandy also answered the question Louanneand 1 other also answered the question

            2 days ago

            Caroline

            Caroline

            I have never expressed my opinion on the seated exercises, but wondered if they were effective. I had one of my spring and summer allergy symptoms last evening. I started to do push ups and the room began spinning around. Each spring and fall I usually get dizzy due to congestion in my head getting bad enough to cause balance problems.

            I told my physical therapist about the incident and she ask how I felt about doing seated exercises. I agreed and was amazed at how effective they were. We used the resistance bands to increase the effectiveness of the movements.

            2 days ago

            • clipperOh yea, its surprisingly effective. All your energy and effort goes into the muscle group you are focused on with less wasted effort. It is much easier for breathing which can translate into more effort towards the exercise. Glad you spoke up to your PT so that you can work around the obstacle and not let it stop you or worse yet, hurt yourself trying.

              Resistance bands are the best, you can do anything and everything with them. At the wellness center I go to they are everywhere. There are racks of bands and tubes in every corner of the gym. 2 days ago

            Louanne

            Louanneanswered the question Cold medicine

            I'm at 17% lung function , I am unable to take a cold tablet . I hope your lung function is much higher , and would encourage you to contact your physician , with lung disease we so often require steroids along with antibiotics and a physician …
            Bill66CharlesHBen Aand 1 other also answered the question Bill66and 3 others also answered the question

            2 days ago

            Louanne

            Louanneanswered the question April is Sarcoidosis Awareness Month!

            Thank you Fabiana

            2 days ago

            Louanne

            Louanneanswered the question Medical ID Jewelry

            Thank. you Bill . I currently utilize a phone app along with a written list in my handbag , pft med conditions etc . Your road id sounds like a good product
            clipperDona VidaOrlanand 1 other also answered the question clipperand 3 others also answered the question

            2 days ago

            Louanne

            Louanneanswered the question Does pollen affect breathing?

            Pollen certainly does affect allergic responses , along with all the other irritants , with trees and bushes flowering seems to be moreso .
            hackRob royKandyand 1 other also answered the question hackand 3 others also answered the question

            2 days ago

            Louanne

            Louanneanswered the question Thick Nails

            Bill Thick nails are an indicator of fungus . I have to be careful getting pedicures and manicures.
            Ben AKandy also answered the question Ben Aand 1 other also answered the question

            2 days ago

            Kandy

            Kandyanswered the question Does anyone use Perforomst? Is it better than inhalers that contain a steroid?

            I am on brovana similar 12 hr broncodialator some days I need to do levelalbuterol in between that 12 hr period.
            Joan GMike RRT also answered the question Joan Gand 1 other also answered the question

            2 days ago

            Sam Clark

            Sam Clark

            Hi guys,

            I was told a few days ago that my x ray revealed, a flattened diaphgram, and hyperinflation. Now the dr said she thinks it can be early emphysema, but we need to do more tests. I must admit I am terrified, as I'm not even 30. I have a very tight chest and shortness of breath for the last 4 months on and off. I am hoping it is not that, but the more I read the more I am convinced it cannot be anything else. Can anyone let me know what they think?

            2 days ago

            • Rob royThere is an inherent danger of taking what one reads as gospel truth and believing it to the point of introducing unwanted worry and stress to ones life which in turn works against one and makes the illness worse.

              It is best to take professional opinion, that is why one sees all these disclaimers, not just because companies are trying to avoid litigation but so one will look to and seek professional help.Believing all one reads is a sure way of inviting stress and worry, go seek medical opinion, they will send you for testing and then and only then will you get an informed opinion and diagnosis, a correct one that suits you and not every man jack of us that believes all that is said on internets , in books and by word of mouth.

              Rest assured if I believed all that is on the internet and other sources I really think it would lead to me being hypochondriacal, but instead and even though I do not personally like doctors I knew it was best to seek medical opinion, and then go from there.2 days ago

            • Mike RRTRob has a very good point, but it's also good to be safe, rather than sorry. Being under 30 is pretty young for an emphysema diagnosis in general, but it does happen, particularly with a genetic form of COPD called alpha-1 antitrypsin deficiency. I would recommend you talk to your provider about getting tested for this, particularly if any members of your family have been diagnosed with emphysema, chronic bronchitis, or other chronic lung diseases.

              It's OK to be concerned, but know there are still MANY possible diagnoses!2 days ago

            • Sam ClarkThanks Mike. I have had a blood test done to see if I have the genetic deficiency two days ago and am waiting to hear. No one in my family has had any forms of COPD or heard much about it in general.
              Last night for the first time I was finding it incredibly difficult to breath 'normally' (I concentrate on it so much nowadays I'm not sure what normal is) and it was scary and upsetting.
              Furthermore I was diagnosed with MS just last year...so I'm incredibly stressed out at the possibility of this alongside that as it doesn't bode well for my immune system at all.
              If you don't mind my asking how did it come about for you? 1 day ago

            Richardmacdonald243

            Richardmacdonald243

            I am on day 7 of oxygen for the first time after my number dropped to 84. My number is back up again but each day is an effort to get out of bed and when I do I sit at my table and generally only use the bathroom and make Tv Dinners to eat. I am 67 .... stopped smoking 4 years ago but feel a decline in lung power ever since. I have to force myself to keep appointments. I use inhalers. Most days I wake up and feel as if its my last one until my lungs begin to inflate. I take sleeping pills and other Rx's but most seem to say they cause respiratory depression so I am cutting back to half of what the Dr. ordered. I kind of wish this roller-coaster ride was over. Any one have an idea how long it takes oxygen to make one feel better or is this a myth?

            3 days ago

            • Click to View All Comments4 comment(s) -
            • Kristen WillardHi Richard -- MuMarie's post made me think about this article on pulmonary rehabilitation. If it's new to you, here's what one of our community members Ken says it did for him: https://www.copdfoundation.org/Praxis/Community/Blog/Article/437/The-Top-10-Things-Pulmonary-Rehabilitation-Did-For-Me.aspx
              2 days ago

            • CarolineI would have to second MuMarie;s suggestion. There is no approved pulmonary rehab in my area. My Dr. has ordered physical therapy which is working out fine for me.2 days ago

            • clipperI would also agree MuMarie and Caroline, try to get hooked up with pulmonary rehab (PR) and if that is not possible chat with your doctor about an exercise program you can do at home. It sounds counter intuitive I know, it might even seem impossible right now but exercise really does help. It really helped me. I was not doing real well for a while then I stumbled upon a pulmonologist who is very enthusiastic when it comes to pulmonary rehab and exercise. Fast forward and I still exercise regularly at a wellness center 5 days a week doing both cardio and strength training. A far cry from a few years ago when I would get short of breath just getting myself a glass of water from the kitchen. I have more energy and I sleep so much better. Exercise is the best medicine, both physically and mentally. It takes time, it is a process but you can build yourself back up. 2 days ago

            Bill66

            Bill66https://www.copdfoundation.org/About-Us/Press-Room/Press-Releases/Article/961/FDA-includes-St-George-s-Respiratory-Questionnaire-SGRQ-in-Chronic-Obstructive.aspx

            3 days ago

              MASiddiqui

              MASiddiquianswered the question COPD & Age: Is there a "typical" age?

              I am 35 and I am somewhere in between stage 3 and 4. Now you ask, why? I will tell you why? my f***** primary doc treated me for common cold for 2 years. even though there were clear signs that my cough was not going away. Thats "why?"

              3 days ago

              Bill66

              Bill66asked the question: What's Best?

              Foods Can Create or Eliminate Mucous! I would like to hear opinions on either eating foods that make you cough up mucous or suppress it?

              3 days ago

              projectpatty1

              projectpatty1

              I want to run my oxygen tubing where the wall meets the ceiling from 2 different tubing from the concentrator. How to measure and what materials would I need.

              3 days ago

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                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.