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.

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Danielsmom

Danielsmom

I've been having a hard month. All I do is cough. Can't sleep for coughing and nothing seems to stop it. I ask my physician for oxygen but was told not till the pulmonary dr approves it and my appointment isn't till December 30th. It's awful to be sick all the time.

3 hours ago

  • HIcopdAsk to be put on a cancellation wsitlist so you can be seen if an opening occurs. Tell your doctor about your coughing and ask for something that can give you relief so you can sleep. If your internist calls and begs on your behalf, sometimes they can move you up and gave you seen sooner as well, especially when you're doing poorly.

    Generally my internist will give me an antibiotic if I have discolored mucus and cough medicine with codeine so I can sleep at night. 48 minutes ago

Danielsmom

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3 hours ago

Ranay-360

Ranay-360answered the question Does anyone recommend a portable concentrator that has contiuous flow of 4lpm?

hi Christine I've been looking for a potable concentrator as well that is continuous flow at 3L-4L but I have only found poc for continuous flow only go up to 3L. I would like to share if I may that what may work for one person may not work for you or …
CarolineKen W also answered the question Carolineand 1 other also answered the question

5 hours ago

Blessed nana 64

Blessed nana 64

Been very sick, am sure if had abg. Test it would be very bad. Even with my oxygen on I can barely move across floor without losing all my breath, have been wearing my bipap alot cuz am trying to stay out of the hospital.... any suggestion r welcome

12 hours ago

  • Stephanie Williams, RRTBy any chance are you under the care of a Home Health company? If so, they can come and do an evaluation of your situation...
    If not, I would suggest calling your doctor and being as thorough as you can in describing your symptoms - for instance: what are your symptoms? when did they start? when did you notice they were worse? how many times have you used your rescue medications today vs a 'normal' day? do you have a fever? etc...
    Perhaps he/she will call in some medications for you.

    But, if you are struggling even with your oxygen on and you think your ABGs would be bad, I encourage you to seek medical help quickly. This isn't a situation you want to "wait out". Wearing your BiPAP is a good start, but you may very well need steroids, antibiotics and other hospital type interventions... I know you are trying to stay out of the hospital, but sometimes that is the best solution. 11 hours ago

  • HIcopdI agree and I'd also call your doctor as soon as possible and tell him or her what you've written here. The sooner you get help, the better it will be. 46 minutes ago

Kristen Willard

Kristen Willardvoted on Approaching the Hospice Conversation: Best Practices for Physicians

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

14 hours ago

Kandy

Kandyanswered the question Smoking bans?

Did't HUD change there apartments to non smoking rule!!

14 hours ago

Stephanie Williams, RRT

Stephanie Williams, RRT

I was teaching a Harmonicas for Health class the other day and a married couple who came to the class together said they had a great idea for a Christmas party game:

They said they were going to compile a list of songs (all genres) and play their version of "Name That Tune" by playing the notes on their harmonicas!

I thought that was such a great idea! What a fun way to spread the Harmonicas for Health experience :)

If you have other ideas, I'd love to hear them! Who knows who we might inspire to pick up a harmonica and positively change how they live with COPD!

Don't be shy! I know you guys have TONS of ideas :)

14 hours ago

    Stephanie Williams, RRT

    Stephanie Williams, RRTanswered the question Support COPD Foundation by shopping!

    Thanks for posting this! I keep meaning to tell my family to make sure they are doing this. It is easy and doesn't cost any extra - so win/win!
    Kristen WillardJanina KKaren Deitemeyer also answered the question Kristen Willardand 2 others also answered the question

    14 hours ago

    smcquade29

    smcquade29Always having fun at our place. Exercise, education and laughter heals all.

    15 hours ago

      Kristen Willard

      Kristen Willardasked the question: Smoking bans?

      I know we've talked a bit recently about smoking bans in housing spaces. There is no ban in my complex, but the norm for (most) smokers here seems to be to distance themselves from buildings. What is the case where you live? I thought this NYT article …

      15 hours ago

      Kristen Willard

      Kristen Willardadded a new article Association between days to complete inpatient discharge summaries with all-payer hospital readmissions in Maryland

      Retrospective analysis of nearly 88,000 hospital discharges at an urban Maryland academic hospital revealed that longer time to discharge summary completion was associated with an increase in 30-day, all-cause readmissions. More specifically, for every three days...

      ...

      18 hours ago

      Kandy

      Kandy

      Here is the deal. My lincare driver comes and says I have to use a concentrator for home use and will leave some liquid for my portables to use out of the house. Every time he comes its a new story. He says because liquid is costing to much and medicare wants to cut costs. They only get paid from medicare $ 80.00 from each time they come and fill the reservoirs. So they are loosing money I have 4 as he only comes every two weeks 98 miles away.
      What is your take on this? He didn't take the reservoirs this time cause we don't know what I will need to fill the portables. Some weeks I run more than others. Summer more active. So this where I stand right now. A lot have ppl in groups have said eventually liquid is going to be fazed out this is what there suppliers are telling them. I am betting eventually they will come with fill concentrators or POC.

      1 day ago

      Nancydun

      Nancydun

      Okay along with COPD, I have a cold too, pretty bad. I was hoping to get out because there is a cvs close by, but never made it, today I've been freezing and I know it has to be cold out there. But I have to get some cold medicine, I do have the pills but I think the liquid helps better.
      I know I have to go back to that apt. building which I have a trip for tomorrow. I was hoping I'd be out of here by now. I know it's a smoke free building where I live now they allow smoking, I know when leaving my apt. I use a mask, in the apt I have had to do things myself because neighbor upstairs is a heavy smoker. I'm hoping the COPD will get a little better at this new apt. So I'll be off line, I know the woman helping me says it's next weekend. But I'm hoping when I am signing the lease they can get me out of here sooner. Because I know the manager will be asking for this month's rent. No way.

      1 day ago

      Rubia

      Rubia

      The pictures below where taken last week with RT, RN's MD's that are involved in the care of those patients with COPD diagnoses. The reason of wearing orange was to make aware our patients and visitors of what "COPD" means and to let them know where to look for consults & treatments.
      The picture I uploaded yesterday was missing 2 more pictures. Please see below revised final picture for the GO ORANGE photo challenge. Thanks to all your great comments.

      1 day ago

        Ben A

        Ben A

        Forgive me for patting myself on the back again, but I have a Ben's Workout Progress Report.

        My new goal has been met! I am now burning 200 calories in 30 minutes or less. Speed varies between 2.5 and 2.7 mph (with occasional sprints at 3.0) but the kicker is that I'm doing the majority of it at an incline of 6%.

        Yay me!

        1 day ago

        clipper

        clipperI stumbled upon this article and thought I would share.

        http://journal.publications.chestnet.org/article.aspx?articleid=2411210

        1 day ago

          Kristen Willard

          Kristen Willardvoted on 5 Questions: Joan Agee

          Gave a thumbs up for a PRAXIS blog post!

          1 day ago

          Jamie Sullivan

          Jamie Sullivanasked the question: Have you reviewed your health plan for 2017? Open enrollment ends soon!

          Purchasing the right health insurance coverage for your needs can be complicated, but for COPD patients, assessing your coverage needs every year is important, and your window to complete this process is nearing a close. Health insurance, whether you …

          1 day ago

          AlinPerry

          AlinPerryanswered the question Would like to know if anyone is on Stiolto? I read where it said it was good for people who have COP

          I am just starting this medication today..I've read good things about Stiolto..
          DrachowHIcopdKaren Deitemeyer also answered the question Drachowand 2 others also answered the question

          1 day ago

          KLE

          KLE

          I'm doing o.k. I've had sleep apnea for at least 18 years. I'm tired as usual. I use CPAP every night all night. I also have rheumatoid arthritis long term.

          1 day ago

          Kandy

          Kandyanswered the question Sleep

          I would love to get this and tried but when my ct shows blebs my pulmo said I cant do it or cpap only in emergency as would cause my lungs to collapse. Darn it!!
          jojekijiViper65vansmithand 1 other also answered the question jojekijiand 3 others also answered the question

          1 day ago

          Kandy

          Kandy

          Well we had our share of weather this week. The wind has been so bad for everyone with the snow. Sounds like next week is going to be very cold. I want to hibernate!! Back started giving me trouble which causes trouble with the breathing so off to chiropractor this AM. Stay warm everyone!!

          1 day ago

            HIcopd

            HIcopd

            @xstaceyx, if you wear nail polish, you have to turn your finger upside down when you have see the oximeter because readings done on a finger's polish are inaccurate, as are readings when you have poor circulation, when you're cold, and sometimes when you're moving.

            If you have the pad of your finger facing the red light sensor of the oximeter, you should be able to get a more accurate reading than trying to get a reading thru nail polish.

            2 days ago

            • Click to View All Comments9 comment(s) -
            • HIcopd@xstaceyx, I'm glad your saturation rates are even higher without the nail polish. That's excellent news.

              @Kandy, since your hands are cold, thre are other places to get an accurate oximetry reading, such as the earlobe and temple using a different probe. It's just that the fingers are just handy for most people. My mom often has cold hands but her oximetry readings are generally 99-100%!1 day ago

            • edpe77Also, reads very low if fingers are wet or damp.
              ed1 day ago

            • xStaceyxThanks for the tips everyone.

              I have been wiping the cross trainer down before use and wash my hands before and after the gym and also have a hand sanitizer with me to use in between. I now wear gloves with the weights but didn't think to wipe them down too. I spend about two hours a day there so its a good thing to do. I've heard about not getting sick & will definitely do more to prevent it than I am x1 day ago

            xStaceyx

            xStaceyxFinally got my little oxygen thing (not good with technical names) $115 here in New Zealand.
            I used it for exercise today, found I stayed within 95-99 except once when doing an ab exercise that causes pressure on the chest.

            Day 11 in a row at the gym, weight is not shifting anywhere fast enough for what I'm doing or my liking but got to keep persevering.

            2 days ago

            Rubia

            RubiaThe pictures below where taken last week with RT, RN's MD's that are involved in the care of those patients with COPD diagnoses. The reason of wearing orange was to make aware our patients and visitors of what "COPD" means and to let them know where to look for consults & treatments.

            2 days ago

            Ranay-360

            Ranay-360answered the question 74 O2 on Trilogy

            Thank u HlCOPD im not sure how to navigate this site yet so im answering u this way I called my dr office because i so SOB they had me go to ER so Im in ER right now will be getting admitted and will call Trilogy provider tomorrow . Thank you for …
            HIcopd also answered the question HIcopd also answered the question

            2 days ago

            Donna Hawk

            Donna Hawk

            Baystate Pulmonary Rehab went orange!!!!!

            2 days ago

              BonBon

              BonBon

              Hi everyone, ya, I'm still alive & kicking ( you just can't keep a good Norwegian down...lol) ....I have kept you all in my thought & prayers, I just needed some time & space. So many things have happened in the last 6 months. My oldest son is graduating from college in 3 weeks, with a 4.0 grade average....sorry didn't mean to brag. My youngest son decided to go back to college & pursue a new degree, so life has been hectic so say the least, & I love every minute of it. Thor (my German Shepherd) is doing great & keeping me active !!! Needless to say, I love that dog, he is also a big part of my life.....I hope all my friends on the COPDF remember me......
              Your friend, BonBon

              2 days ago

              HIcopd

              HIcopdanswered the question Stuck at home??

              Renting POCs can be quite costly. Your O2 provider is supposed to provide adequate supplies to meet your needs--at home and for portability. Many of the POCs are quite reliable and have good warranties that cover repairs. My 1st POC didn't need …
              YabbiViper65Karen Deitemeyer also answered the question Yabbiand 2 others also answered the question

              2 days ago

              Ranay-360

              Ranay-360asked the question: 74 O2 on Trilogy

              Hi. I am new to group. I use a Trilogy at night to help keep my CO2 from building up. Is it normal for my oxygen to drop down (per oximeter) to 74 while using Trilogy?

              2 days ago

              anon0502

              anon0502

              Jean, I'm sorry I just realized your reply to my post as well. You are so right in what you say. Thank you much for your wise advice & tough love. ha! Exactly what I need!

              3 days ago

                anon0502

                anon0502

                Wow! Talk about enlightenment! Thank you so very much especially to Kandy, Clipper, Philoz & xStaceyx. You too Caroline. My eyes filled with tears as I read your replies. You all shared such great ideas, valuable insight & guidance where Ive been so lost. Each of your comments have something hopeful, brave & encouraging in them. Your personal stories touch my heart as well. Don't get me wrong, I'm not the type to keep my head in the clouds. I prefer to keep it real. And that is just what I've gotten from you all. If I'm gonna have to fight for my life, I may as well do it well!!!

                3 days ago

                  Karen Deitemeyer

                  Karen Deitemeyeranswered the question What can you do to help COPD360 Social

                  Just made a donation - thanks for all that the Foundation and staffers, such as you, do for all of us, Bill.

                  3 days ago

                  Terry S.

                  Terry S.answered the question Avoiding a Symbicort Side-Effect?

                  I had problems with my voice while on Symbicort even though I rinsed and gargled. Never had thrush in my mouth. Went to an ENT and after using a prob he noted I had thrush on my larynx. That is what caused my loss of voice. I was prescribed Nystatin for …

                  3 days ago

                  Caroline

                  CarolineNeck Exercises, but it looks mostly useless because it is so small.

                  3 days ago

                  Caroline

                  Carolineanswered the question What can you do to help COPD360 Social

                  Gave on Sunday. Not much, but hope that it helps.

                  3 days ago

                  Caroline

                  Carolineanswered the question Why get hand shakes more some days than others?

                  My shakiness is caused by ipratropium-albuterol inhalation or duoneb by brand name. This is a solution used in the nebulizer. If I have to use it more than twice a day, I become very shaky.

                  3 days ago

                  Mike RRT

                  Mike RRTanswered the question DRINK LIQUID OXYGEN??

                  As mentioned, true liquid oxygen would likely kill you pretty quickly if you tried to drink it. The "liquid oxygen" supplements that snake oil people try to sell you are often just hydrogen peroxide drops (which also aren't good for you to drink), maybe …

                  3 days ago

                  mmkjmg

                  mmkjmg

                  I know I'm overweight but how much does that affect my breathing? It seems like the last two months I just can't catch my breath.

                  3 days ago

                  Kandy

                  Kandyanswered the question Why get hand shakes more some days than others?

                  I wonder if something maybe causing you more anxiety about things more times than others. The medications we take can cause al ot of shaking and and anxiety. Maybe your more short of breath at that time when your more shaky? A lot of things can be …

                  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.