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!

-

Sayem

Sayemreceived the badge Getting started

Earned the Getting started badge!
Elie M.Notorious RonLane07and 22079 others also received the badge Elie M.and 22081 others also received the badge

44 minutes ago

Vinny M

Vinny Mvoted on "You Have COPD."

Gave a thumbs up for a PRAXIS blog post!

5 hours ago

Anthony Colasante, RRT

Anthony Colasante, RRTanswered the question Breathing systems

You have obstructive lung disease. What this means is that you have difficulty getting air out of the lungs. Subsequently you need to exhale for a longer period of time than people who do not suffer from COPD. You may need to utilize breathing techniques …
di545Carolinehackand 2 others also answered the question di545and 4 others also answered the question

6 hours ago

Bellabits

Bellabitscommented on"You Have COPD."

 Hi ClipperI am glad you agree with me about some type of handout that Dr's should give. Don't let patients walk out empty handed with a heavy heart. To this day not many people know that I have COPD. So I am very happy to have found this site. ...

7 hours ago

clipper

clippercommented on"You Have COPD."

 My primary care physician gave me my diagnosis. I walked out of there that day knowing as much as I did when I walked in, nothing. I didn't get gloom and doom, nor did I get encouragement, nor did I get any useful information, I got inhalers and that...

7 hours ago

Anthony Colasante, RRT

Anthony Colasante, RRT

Hello, how do you access the features of the action center.

7 hours ago

Kristen Willard

Kristen Willardcommented on"You Have COPD."

 Thanks for sharing your story, Bellabits. I'm sorry that it was such doom and gloom -- and I'm hoping some of the HCPs reading this can learn from your experience. The PRAXIS social group (it's a subgroup of COPD360Social), is an online community for...

8 hours ago

Bellabits

Bellabitscommented on"You Have COPD."

 It is a scary thing being told you have COPD. The diagnosis can be confusing and embarrassing to some people..I know it was for me. Do Doctors have access to an online community where they can share their stories and maybe get some advice on how to...

8 hours ago

Elisha M

Elisha Mvoted on Giving Tuesday is November 29

Gave a thumbs up for a blog post!

8 hours ago

Elisha M

Elisha Mvoted on Newly Diagnosed with COPD: How Will I Cope?

Gave a thumbs up for a blog post!

8 hours ago

DiannaG

DiannaGvoted on "You Have COPD."

Gave a thumbs up for a PRAXIS blog post!

10 hours ago

DiannaG

DiannaGvoted on MediKidz: Educating Children about COPD

Gave a thumbs up for a COPD Digest Magazine article!

10 hours ago

Kristen Willard

Kristen Willardadded a new article "You Have COPD."

 COPD diagnosis

The doctor looked at his patient, and said, “Joe, you have COPD.”

Normally a friendly guy, a talker, Joe was speechless. He was stunned, then began to feel anxious, making him short of breath– even more so than usual. His doctor went on, explaining what COPD is and what could – and couldn’t – be done about it. Maybe Joe heard that. Maybe he didn’t....

10 hours ago

Kandy

Kandyvoted on The Long-Term Oxygen Treatment Trial

Gave a thumbs up for a blog post!

11 hours ago

Kandy

Kandyvoted on Pulmonary Rehabilitation as a Mechanism to Reduce Hospitalizations for Acute Exacerbations of COPD

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

11 hours ago

Bill Clark - Community Manager

Bill Clark - Community Manageranswered the question Lung volume reduction surgery

Here is the thread I think you are looking for: https://www.copdfoundation.org/COPD360social/Commu...

11 hours ago

Chippie

Chippieasked the question: Lung volume reduction surgery

Several months ago I came across a site that was posted by one of our members regarding LVRS. It is excellent and explains the procedure and the steps working up to and following the surgery. It was written by an actual patient. The problem is I can't …

12 hours ago

Scott Cerreta, BS, RRT - Staff

Scott Cerreta, BS, RRT - Staffanswered the question Pursed Lip Breathing Technique

It sounds like he is doing it right. People with COPD trap air in the lungs. This will naturally force the person to spend a lot of time in the exhalation phase, trying to blow the trapped air out. This can be noisy for some people. Some people even make …
Karen DeitemeyerBellabits also answered the question Karen Deitemeyerand 1 other also answered the question

12 hours ago

chatty

chatty

Hello everyone! I am new member & have COPD amongst numerous other severe medical issues & I have a question that perhaps someone could help me with. My pulmonary doctor wants me to be on an inhaler, however in past I have NEVER gotten along with any type of inhaler due to very adverse effects! Can someone suggest an inhaler that does not effect the heart or have any steroids in it period I am still going through trying to get my adrenal glands to kick back in after being given far to many steroids & it has been a nightmare! I will never take another steroid ever! I also have seizure disorder so take meds for that. I take a beta-blocker, weekly infusion of Hizentra for my CVID, my Lupus can't be treated at this time because I have had too many infections because of the CVID & in fact still fatigued from having Staph pneumonia, staph throughout blood stream & in kidneys. I take Keppra for seizures. I am dehydrated all the time despite drinking lots of liquids & I have chronic pancreatitis with malabsorption ( no I was not a drinker). They have also found a 9mm nodule in lower left lobe of lung. I had histoplasmosis back in 1994 & lost the upper left lobe of lung. Any help would be greatly appreciated. I am not on computer very much because I feel so awful. I do suffer from anxiety & panic so take Xanax. The steroids got my anxiety & panic out of control & it sends me into a situation where I literally think I am dying! Plus losing my mind! I don't know how much more of this I can take. Thanks in advance!

14 hours ago

  • Mike RRTThere are many inhalers available that don't have steroids. The ones that are LEAST likely to have cardiac side effects would be the class called anticholinergics/antimuscarinics. The best options here are the long acting ones, like Spiriva (tiotroipum), Tudorza (aclidinium), Incruse (umeclidinium), and Seebri (glycopyrrolate). These are taken on a daily or twice-daily basis, and are used to control baseline symptoms. There is also Atrovent (ipratropium), which is a short-acting medication that works much like these other meds, but doesn't last as long.

    The other non-steroidal controller class is the beta2-agonists. These include drugs like our old reliable friend albuterol (short acting, has several brand names like ProAir, Ventolin, and Proventil), as well as Serevent (salmeterol), Stiverdi (olodaterol), and Arcapta (indacaterol). These meds tend to have more cardiac side effects (particularly albuterol). There's also Xopenex (levalbuterol), which, in SOME patients, has reduced side effects because of its molecular structure. That was the original selling point, but in my experience, it tends to be a little exaggerated.

    There are also a few combination inhalers that don't have steroids, namely Stiolto (olodaterol/tiotropium), Anoro (umeclidinium/vilanterol), Ultibron (glycopyrrolate/indacaterol), and the brand-new Bevespi (glycopyrrolate/formoterol). These are combinations of the two long-acting bronchodilators, and have the benefits (and risks) of both. Finally, Combivent (albuterol/ipratropium) is a combination of the two short-acting bronchodilators; but, as mentioned, albuterol has the highest likelihood of cardiac stuff.

    All this said, even with the anticholinergics, there is always a CHANCE of cardiac side effects with basically any of these medications. It comes down to your individual biochemistry, and how sensitive your system is to particular molecules. But, hopefully, you can find one that works for you!13 hours ago

  • Scott Cerreta, BS, RRT - StaffHi Chatty,

    I agree with Mike. He laid out a bunch of options. Today, there are a lot of choices available to meet your needs. I'm sure that if you work with yoru doctor to trial a few of these options, you will find one that works for you. Ten years ago, the options were limted to just a couple drugs in each class.

    I would strongly suggest that you download "Optimal Care for COPD - Including How to Get the Most Out of Your Medications" here: http://www.copdfoundation.org/Learn-More/Educational-Materials/Downloads.aspx#OptimalCareforCOPD. This booklet does a nice job of laying out all the drug classes and each drug in those classes. You will be able to clearly see which drugs have steroids so you can avoid them. I woudl encourage you to take this booklet with you on your next doctor's visit so you two can chat about your options and try some out until you find what works with the least amount of side effects.

    You can also order this booklet in printed format by calling the COPD Foundation InfoLine at 866-316-2673. Ask for a Patient Kit. It includes the Optimal Care booklet and some other goodies. 12 hours ago

DonnaA (SSP)

DonnaA (SSP)answered the question Copd stage 4

Hi JRP and welcome to the Foundation! I am just about where your wife is and I agree with Karen, My Dr. said the same thing. However I check with him a lot more often especially when new things happen as things can chenge quickly. I take each day as a …
Karen Deitemeyer also answered the question Karen Deitemeyer also answered the question

1 day ago

Riter

Riterasked the question: Pursed Lip Breathing Technique

How do I know if my husband is doing his pursed lip breathing properly? He exhales between 15 and 30 times per minute, making a nearly continuous hissing noise. It seems to me that he's working very hard but not breathing deeply and getting no benefit.

1 day ago

Bellabits

Bellabits

I just heard a quote that may benefit all of us
Setbacks are setups for great comebacks
:)

1 day ago

    RPlant

    RPlantvoted on Pulmonary Rehabilitation as a Mechanism to Reduce Hospitalizations for Acute Exacerbations of COPD

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

    1 day ago

    RPlant

    RPlantvoted on The Long-Term Oxygen Treatment Trial

    Gave a thumbs up for a blog post!

    1 day ago

    RPlant

    RPlantvoted on Newly Diagnosed with COPD: How Will I Cope?

    Gave a thumbs up for a blog post!

    1 day ago

    RPlant

    RPlantvoted on Harmonicas for Health (and Happiness)

    Gave a thumbs up for a PRAXIS blog post!

    1 day ago

    Bellabits

    Bellabits

    how are you feeling since being on the Z pack? I just got put on meds for a flare up and hoping they work!!!
    Take care

    1 day ago

    Bellabits

    BellabitsHi edpe77
    I saw your question about treadmills. I found on sears.com a treadmill that I think is a pretty good price.
    Exerpeutic 350LS Heavy Duty Fitness Walking Treadmill with LCD Display and 18" Handles That is the name of it and the website says its 294.12
    Proform is a good brand of treadmills also. Sears sells those also.
    Maybe you already found one?

    1 day ago

      clipper

      clipperanswered the question Sleep disturbance

      One thing I make a point of doing is put down the smart phone, close up the laptop etc for about an hour before I go to bed. The blue light emitted from LEDs slows down the production of melatonin. I have found that I sleep much better since I started …
      HIcopdBen A also answered the question HIcopdand 1 other also answered the question

      1 day ago

      hack

      hackanswered the question Travel Oxygen

      Hi Ally: Take all of us Breathers Club people to VA with you and we will make sure your O2 levels are covered. I would take the POC for the plane ride and use around town in VA when going out. When at home and sleeping I would rent one from a local …
      HIcopdJean also answered the question HIcopdand 1 other also answered the question

      1 day ago

      Kristen Willard

      Kristen Willardasked the question: Sleep disturbance

      I just heard a sleep researcher state that 17-41% of people with COPD experience insomnia. Do you experience this? Are there approaches you've tried that help you to fall and stay asleep?

      1 day ago

      Made Pramana

      Made PramanaI am currently reading a thread on my Bronchiectasis online forum about oxygen therapy. In the past I asked my pulmonologist whether my oxygen should be checked. However he didn't want to and he also mentioned about the dangerous CO2 retainer. I have been diagnosed with bronchiectasis for three years and I never have a six minute walking test. Sometimes my heart beat go up to 120 bpm with 93 saturation. Tomorrow I will meet a new pulmonologist and I would like to have a consultation about this. I hope that she will take into consideration.

      1 day ago

      Made Pramana

      Made Pramanaanswered the question Turmeric supplements

      Hello! I am bronchiectasis patient and live in Indonesia. In here there are lots of turmeric and cheap. So I make my own turmeric drink. I use "javanese turmeric" called "temulawak, temu ireng, temu giring." I peel off the skin and wash them. Then I cut …

      1 day ago

      Delia Prieto

      Delia Prietovoted on Newly Diagnosed with COPD: How Will I Cope?

      Gave a thumbs up for a blog post!

      1 day ago

      S. Gray

      S. Grayvoted on Newly Diagnosed with COPD: How Will I Cope?

      Gave a thumbs up for a blog post!

      1 day ago

      DavinaT

      DavinaTvoted on The Long-Term Oxygen Treatment Trial

      Gave a thumbs up for a blog post!

      1 day ago

      ladyjo

      ladyjo

      I want to thank everyone for their comments and help today. I am new at this and have a lot to learn. The wonderful people on here gave me lots of good advice and I plan on taking it.

      2 days ago

        BonBon

        BonBon

        Hi, well our weather has been horrible. We had one of the worst ice storms I've seen in years. They closed schools early (11AM) on Monday & got all the kids home just in the nick of time, closed schools all day Tuesday & Wednesday started schools two hours late....The news warned everyone to stay home & to not even walk on the sidewalks, but of course most people didn't listen. There were several car crashes & cars in the ditches, the hospitals were busey with people falling on the icy sidewalks ( several broken legs, arms & a lot of cuts, stitches, bumps & bruises ) I live in a smaller town in Wisconsin so normally the hospitals are not that bussey.......You all are going to be shocked, for once I listened & I stayed home & in the house & glad I did....lol Now are weather is going to be warm, that will really make a mess.......Oh well !!!
        Peace & blessings

        2 days ago

        Jakota

        Jakota

        I am new to this and trying to figure all this out. Be patient with me.

        2 days ago

        HIcopd

        HIcopdcommented onThe Long-Term Oxygen Treatment Trial

         Here's a link to Salter's webpage with info about some different types of cannulas, including the softer ones. I can really feel the difference with this one and really prefer it over the older ones that were less flexible and left indentations on...

        2 days ago

        tlane

        tlaneasked the question: Turmeric supplements

        Ihave been reading about how good turmeric is for inflammation. How effective is it in helping with inflammation in copd patients?

        2 days ago

        ladyjo

        ladyjo

        ladyjo, Just lost it! I was diagnosed with COPD last February. I did well all summer and then went downhill, suffering from exhaustion and coughing fits. I have nobody to talk to who has this disease and although my friends listen, they have no clue. I need to talk with someone who has this so I can see if they experience what I do. When I wake up is the worst. I feel dizzy, weak and have some shortness of breath. It takes me forever to get showered and dressed. I have become very depressed. I use oxygen when I sleep because a sleep study showed my oxygen level goes way down while I sleep. I am not qualified according to my insurance for pulmonary rehab which means I don't know what exercises I can do. I have almost stopped smoking, going from a pack and a half down to 3 cigarettes a day and I'm so edgy. Can someone please help me to calm down. I go into panic attacks and I'm just fed up. Not getting any help from anywhere and I'm so frustrated.

        2 days ago

        • Click to View All Comments7 comment(s) -
        • clipperFirst good job cutting back, I know how hard that is. You really need to completely quit. Every one you smoke advances the disease. I do get it, I quit June 2015, it is still real fresh with me. Try a free peer to peer online group I used, Quitnet.com

          As far as exercise goes the fact that you don't qualify for PR is good news, it means your stage is not yet severe. First get clearance from your doctor to exercise, you need their OK first. You also need to monitor your O2 to make sure it doesn't get too low, no lower than 89%.

          I exercise at a wellness center. I like having access to all the equipment, trainers and the social component too. If possible I suggest that approach. Basically you want to do some kind of endurance like treadmill or stationary bike for 30 mins I think 5 times a week. It may take time for you to gradually build up to 30 mins at a pretty good pace. A year ago in PR they had me doing 15-20 mins at 1.8 - 2.0 on the treadmill. I now do 45 mins at 3.0 with 0 incline to protect my knees and back. Exercise takes time, gradually build yourself up. You will also want to do some strengthening several times a week. Strength can be dumbbells or resistance bands. I like bands for home they are affordable and versatile. If you join a gym/wellness center you can be a kid again and play on all the equipment. If I knew how you were going to exercise (gym or home) I could make some suggestions.
          You can feel better, I do. 2 days ago

        • clipperOne last thought. To me, cutting back the way you are seemed like torture. It only dragged out that miserable stressed out feeling. Every day felt like day 1 of a quit. If you stop completely you will eventually get over that hump and feel much better. Wish you the best with this. 1 day ago

        • KandyQuitting is a great thing and doable but I think cold turkey is the best. A lot of us have done it this way. Wish you success in quitting.11 hours ago

        JRP

        JRPasked the question: Copd stage 4

        My Wife has stage 4 copd since 2012 and a FEV1 at 14% what is the life expectancies She all the time.

        2 days ago

        LauraO

        LauraOvoted on New data: 49 states plus DC reduce avoidable hospital readmissions

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

        2 days ago

        Kandy

        KandyFound this one today.
        http://www.environmentalhealthnews.org/ehs/news/inhaling-human-pathogens-with-cigarette-smoke

        2 days ago

          abeeaitch

          abeeaitchanswered the question where is the best places top live with copd ?

          Both states are gaining population at a tremendous rate, both states are absolutely beautiful. First of all....Flagstaff or Tucson? Flagstaff can be cold and snowy during the winter and the altitude is pretty high. Tucson is very dry heat but 104 degrees …

          2 days ago

          Mike RRT

          Mike RRTanswered the question Do you have trouble adjusting to CPAP machine?

          This is not terribly unusual. I usually advise people it can take up to three MONTHS to fully adapt to the machine. It's a completely unnatural sensation, and your body doesn't really know what to do with it for a while. When I was diagnosed with OSA, it …

          2 days ago

          Mike RRT

          Mike RRTanswered the question If smoking has an unknown pathogen & you stop smoking, why does that pathogen continue to destroy?

          It sounds like you may have come across Greg Miller's website. He claims to have "cured" his mother's emphysema through the use of various vitamins and supplements, which you can oh-so-conveniently purchase directly from him from the low-low price of …

          2 days ago

          Pam72

          Pam72asked the question: Do you have trouble adjusting to CPAP machine?

          Hello, I'm 51 years old and have moderate COPD and I've had asthma for as long as I can remember. I had a sleep study performed and was told that I don't experience apneas but I experience hypopneas when in R.E.M. sleep. I've received my CPAP machine but …

          2 days ago

          Join Us on COPD360social

          Sign In to Participate
          Or register to become a member
          Men vs Women

          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.