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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layjai123

layjai123received the badge Getting started

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12 minutes ago

HIcopd

HIcopdcommented onWe Need Your Comments for the National COPD Action Plan

 18 tanks for an entire quarter doesn't seem nearly enough, even for MD appointments and marketing. If you have a conserved, like the oxymizer, it could make tanks last slightly longer, but 18 tanks for a quarter doesn't sound like much. What does...

6 hours ago

Buckybuck

Buckybuckcommented onWe Need Your Comments for the National COPD Action Plan

 Today I received my Medicare and You annual update book. I went straight to oxygen. It's part of the durable medical equipment category. All it says is that oxygen is covered , but nothing about new limits or any limits at all. ...

7 hours ago

philoz

philozcommented onWe Need Your Comments for the National COPD Action Plan

 Maybe if an important political were affected by COPD either directly or by association thing might come into public view....

10 hours ago

Brandon

Brandonvoted on A Look at COPD from a Child's Eye

Gave a thumbs up for a blog post!

11 hours ago

Ken Benson

Ken BensonYesterday the COPD National Action Plan was officially released for public comment! This is a huge step for the COPD community and a direct result of the advocacy efforts of COPD patient and professional organizations. Please feel free to copy the announcement for your own organizations or efforts to spread the word.

http://www.uscopdcoalition.org/ResourcesNews/NewsAndEvents/tabid/95/ID/107/First-Draft-of-COPD-National-Action-Plan-Released-for-Comment.aspx

12 hours ago

    Mike RRT

    Mike RRTvoted on We Need Your Comments for the National COPD Action Plan

    Gave a thumbs up for a blog post!

    12 hours ago

    Buckybuck

    Buckybuckcommented onWe Need Your Comments for the National COPD Action Plan

     I don't know where this fits in, but because of Medicare's recent rule changes, many of us find that we are not allotted enough portable oxygen tanks to allow us to be at all active outside our homes. If we may receive only 18 (at the most) tanks...

    12 hours ago

    Kristen Willard

    Kristen Willardvoted on We Need Your Comments for the National COPD Action Plan

    Gave a thumbs up for a blog post!

    13 hours ago

    Joyr

    Joyranswered the question Hi i am new to this site

    My dry mouth and throat are very severe, often waking me during the night. I keep wate by the bed and use Biotene. I also rinse after every inhaled medication, not just the Advair. Brush your tongue and the roof of your mouth. It hasn't cured my dry …
    KandyMendo Brucetxmemeand 3 others also answered the question Kandyand 5 others also answered the question

    14 hours ago

    Evie

    Evie

    Rains it pours I think. Been diagnosed with polymyalgia rheumatica and am on 20 mg of prednisone for now. Very painful but seems to be better controlled. Doc says It is dangerous to stay on this level of steroid but dont want to have level 8 pain like at first so hope there is some better protocol available. Will see doc in 2 weeks and he is carefully monitoring me. At age 74 I think Im doing pretty well by just "keep on swimming" as Ellen (dory) would say. Thanks for listening.

    14 hours ago

      bunnymusic60

      bunnymusic60commented onWe Need Your Comments for the National COPD Action Plan

       STOP SMOKING!!!!...

      14 hours ago

      Fabiana Talbot

      Fabiana Talbot created the event Community Education Day

      The COPD Foundation and Sumner Regional Medical Center are planning an educational event designed for people with COPD and their family members or caregivers. We will be talking about medication usage, nutrition, recognizing your triggers and many other topics.

      14 hours ago

        Fabiana Talbot

        Fabiana Talbot created the event Jackson Madison Hospital Community Education Day

        The Quality Improvement Organization, Atom Alliance, will hold a community meeting in Jackson for the West Tennessee Community. The COPD Foundation has been asked to share resources, information educational materials, and announce the launch of a new Harmonicas for Health program at Jackson Madison Hospital.

        14 hours ago

          Fabiana Talbot

          Fabiana Talbot created the event Cumberland Medical Center Communication Education Day

          Cumberland Medical Center has invited the COPD Foundation to set up an information booth in their lobby as a way to engage new and existing patients. Spirometry screenings will be available for anyone interested. A photo booth will be available to help staff and visitors #GoOrange for COPD.

          14 hours ago

            Fabiana Talbot

            Fabiana Talbot created the event United Healthcare Community Education Day

            United HealthCare is showing their support for COPD Awareness Month by asking for a #GoOrange presentation at their monthly staff meeting. An information/spirometry screening booth will be available. A photo booth will be set up to help everyone #GoOrange for COPD.

            15 hours ago

              Fabiana Talbot

              Fabiana Talbot created the event Lung Force Expo

              The COPD Foundation will present at the American Lung Association's annual Lung Force Expo. We are pleased to join them in the Expo and share information to make a difference in the lives of people living with chronic lung disease. Register here for the event.

              15 hours ago

                Fabiana Talbot

                Fabiana Talbot created the event World COPD Day

                Connect with the global COPD community to raise awareness. Join the conversation by using the #WorldCOPDDay hashtag on Twitter and follow the COPD Foundation.

                15 hours ago

                  Fabiana Talbot

                  Fabiana Talbot created the event Community Education Workshop

                  The COPD Foundation and Cumberland Medical Center are planning an educational event designed for people with COPD and their family members or caregivers. We will be talking about medication usage, nutrition, recognizing your triggers and many other topics. Please register for the event here.

                  15 hours ago

                    Fabiana Talbot

                    Fabiana Talbot created the event Cookeville Regional Medical Center Info Booth

                    Cookeville Regional Medical Center has invited the COPD Foundation to set up an information booth in their lobby as a way to engage new and existing patients. Spirometry screenings will be available for anyone interested. The COPD Foundation will be setting up a photo booth to help staff and visitors #GoOrange for COPD.

                    15 hours ago

                      Delia Prieto

                      Delia Prietovoted on We Need Your Comments for the National COPD Action Plan

                      Gave a thumbs up for a blog post!

                      19 hours ago

                      clipper

                      clippervoted on We Need Your Comments for the National COPD Action Plan

                      Gave a thumbs up for a blog post!

                      20 hours ago

                      HIcopd

                      HIcopd

                      Well, today I prepared and had signed by my pulmo a 2nd set of documents so I can fly with the Inogen G3, which I will be using in an upcoming trip next month. I delivered the docs to the travel agency who will get them to China Airlines.

                      I had originally done this in July for my Simply Go, but it was pointed out to me that since my O2 needs at sea level are still quite modest, the G3 should suit it needs better for the trip. I did use it in Denver and it nearly bet my needs there. I'm very lucky my pulmo was willing to sign the letter promptly, so we can get everything properly processed.

                      The owner if the travel agency said no need to do more paperwork, but H and I will feel better knowing we did everything properly so we won't have hassles and stress with the airlines -- especially since we only speak English. The ok travel agency owner will be coming too and is multi-lingual, but hassles are still unpleasant.

                      1 day ago

                        Karen Deitemeyer

                        Karen Deitemeyervoted on We Need Your Comments for the National COPD Action Plan

                        Gave a thumbs up for a blog post!

                        1 day ago

                        Tina

                        Tina voted on A Look at COPD from a Child's Eye

                        Gave a thumbs up for a blog post!

                        1 day ago

                        Tina

                        Tina voted on An Amazing Journey to the Top of the World

                        Gave a thumbs up for a blog post!

                        1 day ago

                        Tina

                        Tina voted on Why Advocate?

                        Gave a thumbs up for a blog post!

                        1 day ago

                        Tina

                        Tina voted on We Need Your Comments for the National COPD Action Plan

                        Gave a thumbs up for a blog post!

                        1 day ago

                        dmaaero

                        dmaaeroanswered the question A mass measuring 3.5 showed up on CT wasn't measurable 6 months ago . I am having PET scan tomorrow

                        When they found my 3.8 cm 1.5 inch mass they did a bronscopy and a endoscopy but could not get to it for a biopsy. I went to chapel hill hospital and they got to it without sugery, and the results were non miglant. I know the feeling of worry you are …
                        DonnaA (SSP)Mendo Bruce also answered the question DonnaA (SSP)and 1 other also answered the question

                        1 day ago

                        Fabiana Talbot

                        Fabiana Talbotadded a new article We Need Your Comments for the National COPD Action Plan

                        The COPD Foundation has long advocated for the need to create a coordinated, comprehensive national plan to tackle the COPD epidemic in the U.S. Earlier in the year, the National Heart, Lung and Blood Institute (NHLBI) hosted the COPD Town Hall meeting to gather input on what should be included in the first ever National COPD Action Plan.

                        We are pleased to report that the first draft of the National Action Plan has been published in the federal

                        1 day ago

                        Caroline

                        Caroline

                        The word from the pulmonologist is that my lung function has not decreased in the past 2 years. What has happened is the diffusion rate has decreased. I will have an appointment with my GP in the next few days. The two of them work well together including visiting one another's patients in the hospital. My GP specializes in allergies and asthma.

                        1 day ago

                          ElizabethBenkert

                          ElizabethBenkertvoted on 5 Things You Should Know About Pneumococcal Disease

                          Gave a thumbs up for a blog post!

                          1 day ago

                          Fabiana Talbot

                          Fabiana Talbotvoted on 5 Questions: Joan Agee

                          Gave a thumbs up for a PRAXIS blog post!

                          1 day ago

                          Kristen Willard

                          Kristen Willardanswered the question Hypoxia fluctuating . how and why ?

                          So sorry to hear about the loss of your dad, Marion. From your posts it was evident just how much you loved him. I felt that way too when my dad passed away -- as much as I wanted him to be here, he was no longer suffering. Thank you for letting us know …
                          stars55HIcopddi545and 3 others also answered the question stars55and 5 others also answered the question

                          1 day ago

                          Karen Deitemeyer

                          Karen Deitemeyervoted on 5 Questions: Joan Agee

                          Gave a thumbs up for a PRAXIS blog post!

                          1 day ago

                          kbinder

                          kbinder

                          Hi,
                          I am still pretty new to learning about all the different situations with copd. I recently have read alot about having breathing issues when it's cold out and to wear a scarf to be able to keep breathing in warm air.
                          This kind of confuses me cause heat bothers me and my air conditioning being a bit cold helps alot. Anyone have any advice for winter months coming? Thank you

                          1 day ago

                          • Click to View All Comments5 comment(s) -
                          • CarolineThis does seem to be somewhat of a contradiction, but I cannot breathe when the air is hot and humid, nor can I breathe when the air is very cold in the winter time.1 day ago

                          • JeanTemperature can make a huge difference for some folks, and extremes of either heat and humidity or extreme cold can literally take your breath away. I usually do pretty well with both heat and cold, but met my match when it was 20 below with a howling wind of about 45 mph......I swear I couldn't breathe from the hotel door to the car, which was only about 25 feet, and I spent a good three or four minutes gasping before I could even get the car door shut.1 day ago

                          • KandyBeing in South Dakota the weather in the winter is so very cold. I have a mask that is very nice to wear and also use a scarf. The cold getting into our lungs is very bad and I cant tolerate it am dreading winter already. 19 hours ago

                          Made Pramana

                          Made Pramana

                          I've been on COPD360Social for about a year. I'm happy to be here and have support from you guys ;)

                          2 days ago

                          Joan Agee

                          Joan Ageevoted on 5 Questions: Joan Agee

                          Gave a thumbs up for a PRAXIS blog post!

                          2 days ago

                          philoz

                          philoz

                          A question came up in pulmonary rehab class today. If COPD is the number three killer in the world, why do you not see research fund raisers i.e. Race for the cure, around the world? Nobody had an answer.

                          2 days ago

                          • Click to View All Comments4 comment(s) -
                          • Ben APerhaps because of the impression that people with COPD brought it on themselves by smoking and therefore deserve to be sick.1 day ago

                          • JeanI think people with COPD believe that's the way the world looks at them, and undoubtedly, some do. I think we'd be surprised if we did a march on Washington in support of research for COPD. I think we'd find that most people don't feel that we deserve this disease; no one does, and especially not for behavior that was very "cool" when most of us were smoking.

                            When I talk with people about this issue, I usually tell them that about 75% of the people who smoke DON'T get COPD, so I want to know what's different about me as opposed to my best friend from high school who's still smoking happily and hiking the Appalachian Trail in between cigarettes? That usually gets their attention.1 day ago

                          • Jamie SullivanGreat question. As Bill mentioned I think that is an answer we are all searching for. For a long time people have said it was because of COPD being associated with smoking but I really think part of it is also a matter of time and communication. Changing the public's view of what is important is difficult and changing policy makers view of what needs more funding is even harder. The more all those who are impacted in some way by COPD (patients, caregivers, family, healthcare providers ect) start talking about COPD, the more chance we have that the awareness, funding and research take off, thus eventually causing the type of progress that has occurred in other major diseases but not in COPD.

                            We have made progress over the last few years but its small and its a long road to success. The most important thing is your voices. Talk to your friends, talk to your community, participate in research and raise your voice when there is a chance to talk to policy makers. Its frustrating but over time it WILL work! Thanks for asking such an important question! 1 day ago

                          lsamsig

                          lsamsigvoted on Climbing K2 for COPD

                          Gave a thumbs up for a COPD Digest Magazine article!

                          2 days ago

                          lsamsig

                          lsamsigvoted on 5 Questions: Joan Agee

                          Gave a thumbs up for a PRAXIS blog post!

                          2 days ago

                          Kristen Willard

                          Kristen Willardadded a new article Don't forget the diet

                          This one-page Lancet Respiratory Medicine editorial focuses on the need for clinicians to address diet and nutrition as part of their comprehensive care for COPD patients. Addressed are COPD-specific factors (e.g., the extra calorie expenditure associated with effort required...

                          ...

                          2 days ago

                          Kristen Willard

                          Kristen Willardadded a new article 5 Questions: Joan Agee

                          Dr. Joan Agee

                          A new 5 Questions post is here!

                          Joan Agee, DNP, RN, CNOR shares her thoughts on the importance of early screening, confirmed diagnosis via spirometry and the essential nature of patient and family education.

                          ...

                          2 days ago

                          Kristen Willard

                          Kristen Willardcommented onThe Latest in COPD Public Policy

                           Excited to see the updated plan, Jamie! Thanks for keeping us in the loop....

                          2 days ago

                          Jamie Sullivan

                          Jamie Sullivancommented onThe Latest in COPD Public Policy

                           Just wanted to update everyone to stay tuned later today as the National Action Plan will officially be out for public comment!...

                          2 days ago

                          HIcopd

                          HIcopdanswered the question Why am I aspirations at night?

                          I agree that it is a good idea to have an evaluation by a good Pulmonologist. Since you are having aspiration issues and perhaps reflux, ask the doctor to help you with these. There are barium swallow tests you can have, supervised and observed by a …

                          3 days ago

                          HIcopd

                          HIcopdanswered the question COPD Team For Lung Transplant Evaluation

                          The answer, as with so much is, "it depends." SOME folks who are put on oxygen after a severe flare up (also called an exacerbation) are able to exercise and improve their health and lung function enough so that they don't need oxygen after their bodies …

                          3 days ago

                          tlane

                          tlaneanswered the question COPD Team For Lung Transplant Evaluation

                          Thanks Uncle Jim, yes it does help. I do have another question...and maybe one of the therapist c an help with this question. I am just wondering if it is possible with lots of hard work of course, that I can improve my lung function enough to get off …

                          3 days ago

                          Caroline

                          Carolineanswered the question Why am I aspirations at night?

                          GIANNA, are you seeing a pulmonologist for your COPD? If you are, I would not give up until they find something that helps you. There are devices which can help loosen the mucous and bring it up. If you read many of our posts you will find that we have …

                          3 days ago

                          GIANNA

                          GIANNAasked the question: Why am I aspirations at night?

                          I have COPD at night I sleep sitting up in bed I am afraid to lie down because I aspirate. Why am I suffocating on my own mucous at night, why does it build up so much in my lungs and pool basically choking me? Is there anything I can do to reduce the …

                          3 days ago

                          Kristen Willard

                          Kristen WillardInteresting -- do you think this type of program would help you to adhere to medication/device schedules? I get overly excited about earning points even if there is no additional reward, so I'm sure I would be game!

                          3 days ago

                          DonnaA (SSP)

                          DonnaA (SSP)answered the question Will anybody be in southern California in late October?

                          Thank you, Jim for posting this. This is wonderful! Is there anyway to get this posted on FB? Twitter? I would love to pass this along to friends and acquaintances! He is a great guy to do this for COPD.

                          3 days ago

                          Fabiana Talbot

                          Fabiana Talbot created the event 2016 Carolinas COPD Symposium

                          The purpose of this daylong symposium is to bring together healthcare providers, public health practitioners, and COPD patients from the Carolinas to obtain the most current information regarding optimizing the recognition, prevention, and management of COPD.

                          3 days ago

                            Don Kuehler

                            Don Kuehler

                            I'm doing good today been hospital for a little while had a censer and it kind of did me in for a little while but on the mind now just chiropractior pulled muscles loose back in full mod soon

                            4 days ago

                            Uncle Jim

                            Uncle Jimasked the question: Will anybody be in southern California in late October?

                            RIGHT2BREATHE It is estimated that there are at least 15 million Americans who are living with COPD (Chronic Obstructive Pulmonary Disease) but who have not as yet been diagnosed.COPD normally develops very slowly, so slowly that those 12 million tend …

                            4 days ago

                            txmeme

                            txmemeasked the question: A mass measuring 3.5 showed up on CT wasn't measurable 6 months ago . I am having PET scan tomorrow

                            Extremely worried it is cancer as quickly as it has grown .... Could it be scar tissue from Pneumonia I had due to COPD flair

                            4 days ago

                            Kristen Willard

                            Kristen Willard

                            4 days ago

                              Stephanie Williams, RRT

                              Stephanie Williams, RRTvoted on 5 Questions: Tim Buckley

                              Gave a thumbs up for a PRAXIS blog post!

                              4 days ago

                              Stephanie Williams, RRT

                              Stephanie Williams, RRTcommented on5 Questions: Tim Buckley

                               I could not agree more with your statements about early, accurate diagnosis and the need for Pulmonary Rehab.Thanks so much for this article. I hope that RTs will, in fact become more engaged in 'well care' and find themselves being utilized in...

                              4 days 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.