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.

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ABF

ABFreceived the badge Getting started

Earned the Getting started badge!
shuswapLinda  Knights3610314and 23860 others also received the badge shuswapand 23862 others also received the badge

52 minutes ago

Polenski

Polenskivoted on Two Years Later... Julie Nimoy Remembers Her Dad

Gave a thumbs up for a blog post!

7 hours ago

Jean

Jeananswered the question what oxygen level do I need to maintain while exercising

Because of your recent illness you're not up to par yet. I don't know what your doc told you about where to keep your O2 saturation levels or what liter flow was prescribed, but there's no reason not to crank the O2 up on your concentrator so your O2 …
clipperLouanne also answered the question clipperand 1 other also answered the question

15 hours ago

Bill66

Bill66voted on How a Pulse Oximeter Works

Gave a thumbs up for a blog post!

16 hours ago

Bill66

Bill66answered the question Have any of you had problems with changes in meds?

I would speak to your Doctor, my Doctor said main thing is to keep your blood pressure under control, it fluctuates 10 points either way. it's when it's steady high all the time. I don't like altering medication, because mentally your body thinks it's …

19 hours ago

clipper

clipperanswered the question Does quick recovery from SOB and low O2 {87} mean trouble?

From what I understand the short dips like that are not bad but if I could easily avoid it or work around it, I would. Next time take a 1 or 2 min break to do some breathing half way through. Collect the wood, PLB for 2 mins then back in the house, that …

19 hours ago

edpe77

edpe77asked the question: Does quick recovery from SOB and low O2 {87} mean trouble?

Just did a short experiment. I went outside {temp 45F/cloudy-riny} and collected a small cart of fire wood. Perhaps 2-3 min. Result, SOB! so I sat down and did a series of PLB's, while monitoring O2. At first my O2 was 87 {typically I'm above 90}, after …

19 hours ago

edpe77

edpe77asked the question: Have any of you had problems with changes in meds?

I started with a new Dr. recently, he did a complete blood screen, and we had a through discussion of my current status. He seems very pleasant, and a good listener. Aside from COPD and Arthritis, I frequently get up at night. I was taking 20mg …

23 hours ago

DBerger

DBergerasked the question: what oxygen level do I need to maintain while exercising

I was diagnosed with moderate COPD many years age. For the past 15 years I have walked on the treadmill 4miles a day at 3.5 miles per hour. But a recent hospitalization with pneumonia and pleural effusion has made it hard to do. I am using oxygen on the …

1 day ago

Bill66

Bill66I just Received my Pulse Oximeter my wife ordered from Amazon Prime for 16.00 It was recommended by a pulmonary nurse. Accumed CMS50DL
I'm very happy getting this๐Ÿ˜€

1 day ago

Karen Deitemeyer

Karen DeitemeyerOne more photo from yesterday's seminar - this is of Bob Sobkowiak, who is the State of Florida Alpha-1 Detection Coordinator and the Florida COPD Coalition Coordinator:

1 day ago

    Louanne

    Louanne

    I was glad to join other State Captains in making calls to my reps that could make a difference in our healthcare .

    1 day ago

      Louanne

      Louanne

      I've been referred to an oncology surgeon next week . I went for my procedure Thursday , only to be advised that I required a different surgeon . I'm a bit perplexed , yet after a consultant, I'm glad to see the Oncology Surgeon .

      1 day ago

      Karen Deitemeyer

      Karen DeitemeyerWell, I couldn't figure out how to attach 2 photos, so here's the one of the information table:

      1 day ago

      Karen Deitemeyer

      Karen DeitemeyerI did a presentation on Advocacy at a Breathe Strong Florida seminar yesterday. The seminar was held in a 55+ community near Clermont, Florida.

      Here's a picture of me and the COPDF information table and one of the slides in my power point presentation about advocacy:

      1 day ago

        philoz

        philoz

        Very frustrated. I had suffered from cramps in my ribs and upper abdomen for nearly 30 years and none of my Doctors it seemed were concerned with it. Then in 2015 I changed Doctors and was sent to a series of specialists. Needless to say, after a bit of surgery to remove a cancerous spot on my lung, about a year and a half of pain meds and pulmonary rehab, I had no cramps and was feeling great. Now the cramps are returning with a vengeance. I sent a note to my Pulmonologist only to have it forwarded to my gp. Why do I even bother trying to talk to the pulmonologist? Sorry I just needed to vent as I am certain there are others out there with the same frustrations.

        1 day ago

        • Click to View All Comments5 comment(s) -
        • KandyNoah Greenspan just had a live video about rib cramping due to hyperinflated lungs 22 hours ago

        • clipperNoah Greenspan has some good videos. There was great one about exercise with Donna Wilson. If you haven't caught that one, its worth the time. 21 hours ago

        • Gretchen McCrearySo sorry to hear this Philoz. I hope it is nothing serious and you start feeling more yourself soon. Venting is healthy. Sometimes we just have to get it out!1 hour ago

        zania

        zaniaanswered the question cpap cleaner

        Evie, I use the SOClean machine three or four times a week to freshen my ResMed CPAP machine and mask. SOClean offers adaptors so it may be used with various CPAP equipment. The cleaner takes care of the mask, tubing, connectors, the water chamber and …

        1 day ago

        Bill66

        Bill66voted on Have Trouble Eating with COPD?

        Gave a thumbs up for a blog post!

        1 day ago

        Bill66

        Bill66

        I have no positive comments on healthcare or healthcare insurance in the US. As long as our politicians have the best health care possible, what's the difference for anyone else?
        In my opinion it's all horrible and a shame to call it healthcare. People can barely afford to eat if they get prescriptions they need, check out your hospital bill? Check and see what a Tylenol cost in a hospital? I'm just throwing out there.

        1 day ago

        • HIcopdActually, I believe there was a bill that passed that required our national elected officials to buy their insurance on the ACA exchanges. I'm not sure whether that bill may sunset, but at least currently, they have ACA insurance--they may have more plans to choose among, but it still is ACA insurance plans that are on the exchange.

          The US healthcare still has a long ways to go, as there are MANY vested interests who pay a LOT of money in campaign donations and lobbying--money still does talk.1 day ago

        Rob roy

        Rob royanswered the question Hyper-inflated lungs

        Bill Clark, For me y our describing things exactly, actually I was, in imperial terms of weight 12st 3 lb, now I weigh 9 stone. that explains quite a lot to me.
        zaniaclipperMendo Bruceand 6 others also answered the question zaniaand 8 others also answered the question

        1 day ago

        HIcopd

        HIcopd

        I am SO happy that the ACA bill will continue to be in effect and continue to provide medical insurance and basic essential benefits for more citizens in the US! YIPPEE! This is the best insurance news I've heard since the election!

        We will have to work with the US COPD Coalition to help make sure that folks with COPD and other chronic lung conditions get access to the treatments and medications they need to optimize their lives, but having medical insurance which provides coverage is an step.

        1 day ago

        Delia Prieto

        Delia Prietovoted on Identifying the Alpha-1 Patient

        Gave a thumbs up for a PRAXIS blog post!

        1 day ago

        Stephanie Williams, RRT

        Stephanie Williams, RRTanswered the question Extender with Medication Inhaler

        Using a spacer with your inhaler does keep you from feeling that 'blast' of medicine, but in actuality, you get more medicine using a spacer. To use an MDI without a spacer, you have to be pretty coordinated with the puffing of the medicine and your …
        hackclipper also answered the question hackand 1 other also answered the question

        1 day ago

        Stephanie Williams, RRT

        Stephanie Williams, RRT

        So the past 2 days have been very exciting!
        I hosted a 2 day seminar; the first day was for folks living with COPD and their families/caregivers, and the second day was for Respiratory Therapists and Nurses.

        For the COPD patient and caregiver day we had 6 different sessions including: COPD 101, Medication Management, Recognizing triggers and flare ups (exacerbations), Pulmonary Rehab and more. Those that attended were so thrilled with what they had learned they are already asking for another day of classes! (I can't post pictures because they are too dark)

        The RT/RN day was exciting, too. We had sessions on new technologies that are in development, how to better help COPDers transition from hospital to home, helping people cope with the idea of living with a chronic disease, and several other topics.

        These workshops are so beneficial to so many and I can hardly wait until my next one!

        1 day ago

        CathyC

        CathyCvoted on Identifying the Alpha-1 Patient

        Gave a thumbs up for a PRAXIS blog post!

        1 day ago

        clipper

        clipperanswered the question Spirometry results - Wath to do next?

        Prieto74 I understand living in rural Spain, access to a pulmonologist is difficult and that makes this more complicated for you. Mike is an excellent Respiratory Therapists and is very very familiar reading test results. He pointed out based on your …
        Mike RRT also answered the question Mike RRT also answered the question

        2 days ago

        aliingreenvalley

        aliingreenvalleyanswered the question REQUIRED READING FOR CAREGIVERS, FAMILY, AND FRIENDS OF LUNG DISEASE PATIENTS.

        Thank you, Uncle Jim, for compelling comments. Now is a good time to mention another thing we probably try to avoid addressing and that is end of life planning. I urge everyone to read the book "Being Mortal" by Atul Gawande MD. It is a fairly short but …
        Viper65LouanneRob royand 4 others also answered the question Viper65and 6 others also answered the question

        2 days ago

        aliingreenvalley

        aliingreenvalleyasked the question: Extender with Medication Inhaler

        Another question from a new extender user. I am trying to decrease side effects of Symbicort so just started using an extender. I am so used to the "blast" when you don't use an extender that I am wondering if I am getting the full dose. Or does the …

        2 days ago

        Prieto74

        Prieto74asked the question: Spirometry results - Wath to do next?

        I received today the result of the espriometry. I think I'm in the moderate stage with a 71% Feb. I only have a consultation with my CT from here for a month to show you the results. Should I be on medication right now? In fact, I do not feel the need …

        2 days ago

        Clayborne

        Clayborne

        Feeling optimistic about finding new treatments and meeting more people in this community. Hopefully, we can support one another and live fuller lives.

        2 days ago

        Carole Jean

        Carole Jean

        Thank you for your response Kristen ...I appreciate your kindness.
        Carole Jean

        2 days ago

          RhondaPatton

          RhondaPatton

          Hello.

          2 days ago

            DaniGirl

            DaniGirl

            so glad to hear and share our trials and tribulations on this disease.New to the community and am so pleased to have found you..

            2 days ago

            Carole Jean

            Carole Jean

            Congratulations Janet, on getting your badge. I am new to this site so, forgive me because I thought it was just a chat site. Trying to connect with others to see how they manage their copd. Do they do any specific breathing exercises that are simple? That sort of thing.

            2 days ago

            Carole Jean

            Carole Jean

            I am doing ok, I have COPD ( Bronchitis) and lung Cancer I am also on oxygen. I do not always nee the Oxygen, if I go out for a few hours, My Symbacort Inhaler is close bye. I get really sob on exertion... can't lift groceries or any thin really heavy.

            2 days ago

            Kristen Willard

            Kristen Willardvoted on Identifying the Alpha-1 Patient

            Gave a thumbs up for a PRAXIS blog post!

            2 days ago

            Evie

            Evieasked the question: cpap cleaner

            Does anyone have info on using an ozone cleaner machine for cpap devices?

            2 days ago

            Rob roy

            Rob royanswered the question Symbicort Question

            How can you use a spacer for the symbicort, i'm intrigued as I inhale Symbicort from either a 60 dose or a 120 dose prepared inhaler.I still use a spacer for Salbutamol unless I am outside and did at one time take Fluticazone (flixotide) through a spacer …
            clipper also answered the question clipper also answered the question

            2 days ago

            aliingreenvalley

            aliingreenvalleyanswered the question Musical Therapy: COPD and Harmonicas

            My Better Breathers group recently had a retired pediatric surgeon who is also a harmonica player speak. He gave each person at the meeting a harmonica to keep and helped us learn the very basic things about how to play. It was a great experience. He …

            2 days ago

            aliingreenvalley

            aliingreenvalleyanswered the question COPD hospitalizations

            One other thing Kristen! Please ask them not to refer to us as "chronic lungers" This is really disrespectful and demeaning.

            2 days ago

            Bill66

            Bill66

            Suggestions on simple supplements for COPD? I Take a men's 50+ multi and try to get the rest from basic food group's. Omega 3 was suggested by healthline? Just curious what works and what doesn't?

            2 days ago

            • clipperNext time you go to your doctor and have blood work done, them check your vit D levels.

              https://www.ncbi.nlm.nih.gov/pubmed/214192812 days ago

            • evesA naturopath will recommend a ton of stuff, but most everything from my research does not get to the lungs. For instance glutethione is important, yet ingesting it does not do anything, inhaling it bathes the cells and who knows what bad or good that does. Gluthethione is made within the cell and needs a bunch of precursors to do that task. It is a very complex thing.
              I always argue with my naturopath ;)

              So a few questions might be, do supplements 'heal' lungs? Nothing has been proven to do that.
              Do supplements keep them from worsening, or worsening as quickly?
              So I think it is more about trying to keep colds etc away, or exacerbations.....A daily garlic clove or two, smash it and let it sit for 10 minutes so you get the real oomph. Curcumin, Vit D, C, E,
              You can research cordyceps, (I always research side effects or dangers of) There were some studies done with panax ginseng G115 Again you have to research, and note who and where the research has been done.
              I think often people report feeling great or good while on something, yet it might not be due to that thing they are ingesting, but rather their disease is just stable. These things are next to impossible to prove unless large studies are done, so we don't know what works and what doesn't.
              In the meantime, you can just go ahead and take the things that are not harmful and build immunity and maybe it's safe to take things that prevent oxidative stress.
              But there are so many supplements out there that are not quality. There are some that have a certification label, not sure how much guarantee that is :)
              Sorry I'm not much help. 2 days ago

            Jamie Sullivan

            Jamie SullivanOur partners at the American Association for Respiratory Care are hosting their annual Virtual Lobby Week and they need our help. Let's show the respiratory therapist community how much we value the support and education they provide COPD patients.

            Visit their action center to send emails to your elected officials about the need for telehealth programs to include respiratory therapists. They make it easy, just click the link that applies to you and follow the prompts to complete the emails. We will be joining RTs from around the country here in Washington, DC on April 4th to bring your voices to Capitol Hill and be on the look out for a revamped COPD Action Center right here on our site next month!

            http://capwiz.com/aarc/issues/?style=d&utm_source=social&utm_medium=ad&utm_content=lobby17

            2 days ago

            Mike RRT

            Mike RRTanswered the question Whats our plan to get Respiratory Therapy service reimbursed by Medicare and Insurance for SNFs

            The first bit of the plan is in progress right now. The American Association for Respiratory Care is putting on Virtual Lobby Week right now, an annual event leading up to a major lobbying day on Capitol Hill. Part of this year's lobbying efforts …

            2 days ago

            Kandy

            Kandyanswered the question COPD hospitalizations

            It had been many years between being in the hospital which is a good thing but they sure do things different than years ago. Seems like they take forever to get things done. End of March last year my daughter took me to a bigger hospital 100 miles away …

            3 days ago

            Kandy

            Kandyvoted on Identifying the Alpha-1 Patient

            Gave a thumbs up for a PRAXIS blog post!

            3 days ago

            DiannaG

            DiannaGvoted on Identifying the Alpha-1 Patient

            Gave a thumbs up for a PRAXIS blog post!

            3 days ago

            Buster1971

            Buster1971asked the question: Whats our plan to get Respiratory Therapy service reimbursed by Medicare and Insurance for SNFs

            Hi, Our most vulnerable population with COPD doesn't currently have access to respiratory therapist after hospital discharge to a skilled nursing center . CMS doesn't recognize the need for these residents to have access to RTs , they think nursing can …

            3 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.