Gretchen McCreary

Gretchen McCreary

Donโ€™t forget to Vote! Today we launch the Help GUIDE COPD Research event on COPD360social! Cast your votes for the 25 Research Priorities that are posted for you to rank on COPD360social: https://www.copdfoundation.org/Research/BRIDGE-Project/Help-Guide-COPD-Research.aspx


Thank you for your continued support to the COPD Community. Your voice does matter and now you can use that voice and your experience to contribute to the future of COPD research!

5 days ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question Why my doctor changes my meds!?

And most of the drug reps are the best looking people on the planet! Especially at the hospitals! Just throwing it out there.

9 hours ago

das23

das23answered the question Why my doctor changes my meds!?

Katherine58...Might be time to change Drs as Jean said. And like Bill said - a lot of these Drs are wined and dined by the drug companies so they'll prescribe their drugs. Fight for the med that works best for you!!!!!----And keep trying to quit smoking- …

9 hours ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question Face Mask & Nasal Cannula Together

N95 masks are very hard to get used to. Most people rip them off in frustration, I know I do, its like being under a blanket its great for a few minutes and then you have enough and you need real air.

10 hours ago

Klee

Klee

Anyone want to get up and have a dance with me? go at your own pace.. just don't trip over tubing..

https://www.youtube.com/watch?v=ziN7Y1M1v8s

10 hours ago

Bill Clark - Community Manager

Bill Clark - Community Manageranswered the question Face Mask & Nasal Cannula Together

I asked our medical advisers and this is their response: 1- as the CDC recommendations suggest wearing a regular surgical mask will not prevent viral infection 2- for those who are infected wearing a surgical mask could help prevent spread of infection …

11 hours ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question Why my doctor changes my meds!?

We never discussed change of inhalers, I inquired about Anoro, my insurance denied it, even with a Pre Auth, so he put me on Bevespi, I just didnt fill it, and asked my primary to put me back on the Incruse. No issues

12 hours ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question Why my doctor changes my meds!?

On behalf of patients, there has been great success with Anoro and Trelegy as well as most inhalers manufactured by GSK. GSK has been a great leader in COPD Management and I'm hoping GSK stays in the respiratory business, with generic inhalers being the …

12 hours ago

Amandagale

Amandagale

Good

12 hours ago

Klee

Klee@edpe77.. come on mate I'm going to take you on a armchair trip to Australia.. all you have to do is close your eyes and imagine  when you could still walk  well.

So imagine your footprints are mingled in the sand you see.. feel the sand /heat between your toes.. it's so relaxing.. sit down , cross legged.. and stare at the sky.. the horizon.. take  deep breaths of salt air.. 
there is literally no one else around.. it's a weekday.. maybe a few up there a bit.. but never close.. this is one of my favourite beaches.. and I take that image with me when I go into ct scans etc.. I just imagine Im sitting there.. 
then I'll take you for some fish and chips fresh from the day and have an icy cold beer with you.. . it's so relaxing and we can't help but smile.. 

12 hours ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question Why my doctor changes my meds!?

My Pulmonologist changes my inhalers also, I contact the office and get no results whatsoever with no call back, he tells me I'm stable and there isnt much he can do for me, so I go through my portal and deal with my primary. This is where I get results! …

13 hours ago

Lungguy

Lungguyanswered the question Still confused

I agree with your allergist regarding allergic asthma and not COPD. Minimizing inhalation of the things to which you've become allergic should be a top priority. At least keep the cats out of your bedroom. Consider adding a spring loaded door closer. …

13 hours ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question Why my doctor changes my meds!?

Katherine58, Ive been in pharmacy management for 31 years, minus a few years at Toys R Us. I was just suggesting that it doesnt hurt to ask. I know of some Doctors who do not allow reps inside the office.

13 hours ago

JeanO53

JeanO53answered the question Why my doctor changes my meds!?

Katherine58 - Have you asked him why he keeps changing your meds? And have you told him that the meds he's switching you to are not helping you? One thing I've learned with this diagnosis, is that we need to be our own best advocates. If it's not …

13 hours ago

Katherine58

Katherine58answered the question Why my doctor changes my meds!?

Iโ€™m just tired of wasting my time and energy of running back to this guy when I donโ€™t need to since he is the one causing all these problems

13 hours ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question Why my doctor changes my meds!?

I would find out if if drug reps are permitted at your Drs office, if yes, there's your answer!

14 hours ago

Katherine58

Katherine58asked the question: Why my doctor changes my meds!?

I was on Incruse - once a day and symbicort - twice a day - I wasnโ€™t complaining about anything and when I went to see my pulmonologist in Jan he switched me to Anoro once a day - took symbicort away A month later felt awful - short of breath. Went back …

14 hours ago

Marsha Gail

Marsha Gail

Well, color me happy! This has been a beautiful, warm day with no wind here in the Land of Enchantment. I finished week 2 of PR today, and my exercises have all been increased, and I am able to do them pretty easy. Also, the RT told me that I need my O2 on 6 Pulse when I walk, but lowered it to 4 Pulse for all the other exercises. So when I got home, I put my POC in my backpack and went for a walk. I only did 2 blocks, but I did not get SOB and my O2 stayed at about 91, All in all, I'd say that that's a pretty good day! Before I started PR, I never could have good 2 blocks. And I have you to thank for it, because my pulmonologist didn't tell me about it. I asked him for the recommendation. I hope the weekend is blessed for each of us.

14 hours ago

Brew

Brewasked the question: Face Mask & Nasal Cannula Together

Being that this Coronavirus is going on, I thought I may ask; if any one has looked into or knows, how we would go about wearing a face mask and nasal cannula together at the same time.

14 hours ago

Klee

Kleefound a fluffy 1. 

Mother wallaby with her baby...whom is ready to jump back into mums safe pouch.. they are very shy and if scared can start running and if they don't calm down can die from running/heart.. they are clearly related to the kangaroo family..
so cute

15 hours ago

Klee

KleeOk she is not fluffy .. this is a waterdragon that came inside to sit and see the view .. from when I lived in the aussie bush

15 hours ago

Klee

Klee

Hi, I'm wondering if 1. anyone has tried this or seen it used?2. I cannot find the cost anywhere and if anyone could find out? or knows. ? I can't call them and if it's totally cost prohibitive .. I'll look at other options.. really appreciate it if someone could help. 3. are there any other machines that can help remove co2?4. On the clinical video , Dr say's it gets to parts of aveoli.. does anyone know if this could be an option other than valve surgery ?experience is much different to just trying to read/research.
Thanks


https://www.breathetechnologies.com/patients/life2000-continuous-ventilation-system/

16 hours ago

  • NewestOldestClick to View All Comments12 comment(s)
  • Klee
    I don't get healthcare like you guys do.. it's self funded ..I don't see my Dr until november.. so can't ask him..  will know then if I can get valves or not.. but thats another 9 months.. to wait to know.


    13 hours ago
  • Klee
    my nurse can't read the scan results and my PC DR says doesn't know ,, nurse says I need a new PC but we can't find 1.
    basically on my own trying to get any help.. can't call lung DR ever. so.. that's it. I would love to be able to move somewhere with a good PC and copd dr and hospital. my local hospital (not just me.. its well known as bad) deaths from neglect etc.. staff issues with each other.. Ive seen terrible things there. 
    anyway I don't want to go back there or die there. so trying to find at home solutions. only got nurse. she is wonderful but exhausted because there is no help for any of her patients. some can't even afford food and medications.  we used to have a good health system. but this gov took away funding.. so I can't even get disability parking.. or community transport.. or aids.. cause it's considred a medical issue not a disability.13 hours ago
  • KleeIt's not just me .. we have disabled kids literally dying because the system has changed and the wait to get help can be over a year .. they took away the services in place .. and set up ndis.. it's a horrible country to be sick in these days..

    1,200 Australians die waiting for NDIS paymentsAnastasia SantoreneosYahoo Finance AU15 January 2020




    https://au.finance.yahoo.com/news/1200-australians-die-waiting-for-ndis-payments-235018643.html13 hours ago
Bill Clark - Community Manager

Bill Clark - Community Manageranswered the question Shower

Before, after and during!

17 hours ago

perkyH

perkyHasked the question: Shower

Can I continue to use my cannula after using in the shower

17 hours ago

Forgeti5

Forgeti5

โ˜บ Saw my old profile pic briefly with old name. Someone is still trying to pull up pic for me. Thanks
for the extra effort. If it's you, Vinny,
That's above and beyond your duty.
Whoever it is, thanks! Kaya โ™ก๐Ÿ’ƒ๐ŸŽถ

18 hours ago

Community Announcements

Community Announcementsadded a new article A Coronavirus Update for the COPD Community

We understand the COPD community may have questions about the coronavirus, now called COVID19. We want to reinforce that the most important thing people with COPD can do is prevent the spread of respiratory infections with a few simple practices. If you have specific concerns about your individual health circumstances, we encourage you to contact your healthcare professional team directly.

To prevent the spread of respiratory infections following a few simple suggestions may help.

  1. Avoid being close to people who have a respiratory infection like a cold or influenza
  2. Consider switching from handshakes to elbow bump
  3. Wash hands often
  4. When you cannot wash your hands, consider using a hand sanitizer
  5. If you have a respiratory infection, stay home from activities where you may spread the infection-- church, schools, sporting or social events
  6. Cover your nose and mouth if you are coughing from a respiratory infection and help others around to learn to do the same

The CDC has updated its travel warnings. You should avoid nonessential travel to China and South Korea, and consider postponing travel to Italy, Iran, and Japan. For countries outside of this list, please speak directly to your health care team and regularly monitor the CDC site at https://www.cdc.gov/coronavirus/2019-ncov/travelers/index.html for updated warnings if you are considering international travel. Read More...

19 hours ago

Lorrie State Captain of South Mississippi

Lorrie State Captain of South Mississippi Hap Hap Happy Fluffy Friday friends.  Welp here's
Siblin and she growin up quickly.  She's here playin with J Kitty through the door.  Man it's a Beautiful Day here in the South bit Chilly oh but tge Sun is shinin brightly.  Well my Hubby and DebbieB nominated me for a Cubii and there nomination got me one from the Cubii cares program.  Ima tellin ya'ens talk biut a work iut this thins will make ya'ens think ya'ens have walked a millon miles , it give other parts of ya'ens body a work out as well,  been holdin cans in my hand and usin em as weights kinda like redneckedness hand weights LOL  .  Wanna say Thank ya'ens DebbieB for bein so kind . My Smokin is goin Wonderful i really don't know how many days now all i know is,  it seems ta be goin well.  Up ta walkin 2 miles on treadmill at 3mph . Doin breathin exercises as well as lifts and twists . Well ya'ens have a Wonderful weekend and enjoy all God's blessin if ya'ens feel there are none just look round . 
Peace out People 
Ya'ens Friend 
Lorrie 

19 hours ago

Katie66

Katie66

I am a newly diagnosed COPD person and am experiencing a lot of emotions about this.

19 hours ago

  • NewestOldestClick to View All Comments10 comment(s)
  • lynn311No print
    Huge gap in lines I may have never done these things if I didn't have COP

    I Care Bill Clark - Community Manager,Vinny M and Klee care about this

    13 hours ago
  • JeanO53Welcome to 360Social Katie66โ€‹ - Many of us have been where you are right now.  Hang in there. 
         I remember quite well the first week after my diagnosis.  It's been 2 years since then.  Checking in here with the other members of this community really helps me continue to move forward.
         We're all here for youโ€‹.13 hours ago
  • lynn311No print to print and missing space. Better now. Thanks :-)12 hours ago
clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain Kiki chillin in her bed in a box. One in almost every room. 

20 hours ago

Resurrected1

Resurrected1

Hello,


Do anyone on this site own pets (cats, dogs) specifically.  And is this not recommended for folks dealing with COPD?  I have a dog and was wondering if its time to consider this as a health issue.   Thanks

20 hours ago

Kristen Willard

Kristen WillardAnyone want to guess who these belong to? Happy Furry Friday!

21 hours ago

Bill Clark - Community Manager

Bill Clark - Community ManagerFor those who exercise and own dogs

21 hours ago

edpe77

edpe77asked the question: Does anyone use an in line swivel on their O2 tubing?

O2 tubing tangles. Yesterday I decided to insert a swivel in line on my tubing. To soften the tubing, I heated some water, and held the tube end in it for a bit, then worked it on the tube. After getting both ends on the swivel, I dunked it in the water. …

22 hours ago

2cents

2centsThis is Callie's other happy face.

22 hours ago

Forgeti5

Forgeti5

โ˜บ Slept well last night. Have time
today to do some housework and some crafts. Some coughing this morning but not bad. Hope all have
a great day. Kaya โ™ก ๐Ÿ’ƒ๐ŸŽจ

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Happy Fluffy Friday and hiya! Or, should I say hi-YA! Here is Ms. Cricket Smudge displaying her latest karate move. 

1 day ago

Laverne&Shirley

Laverne&Shirley

I'm up in the middle of the night, nothing unusual for me. I'm looking at different options for help with quitting smoking, knowing this needs to happen very soon. I see there's a lot of apps on google play. Does anyone have experience with any of them and can recommend one, or give constructive feedback about them? Does anyone participate in a support group or some of kind of real life, not internet, support?

1 day ago

  • NewestOldestClick to View All Comments5 comment(s)
  • GrouchoTexFYI I guess I didn't make it clear, but "Quit Tracker" is a free smart phone app.
    It does have some ads.16 hours ago
  • Laverne&Shirley
    Debbie, thank you so much for your information and link. I followed the link and joined the ex site and am already finding it quite helpful. I will look at the resources you suggested as I think I will need something to attend as well. While the internet is a powerful tool in situations like this, I also know quitting is going to be the hardest thing for me and any support will be helpful. Especially something that gets me out of my usual routine that will likely make it difficult to avoid triggers. I would love the links to QiGong, if you don't mind sharing.





    GrouchoTex, I am going to look for that app on google play. Thank you for the suggestion. 8 hours ago
  • clipper (Debbie) - NJ State Captain This is a YouTube playlist of my QiGong video collection. The first few are probably the best ones to look at first.
    If I was out and an intense craving I would quietly and discretely do some energy breathing, like in the frozen food aisle of the grocery store. It is a tool you always have with you. Itโ€™s great even beyond quitting, I do something pretty much every day just to destress, stretch and breathe. Enjoy

    https://www.youtube.com/playlist?list=PLWGIiQ8mVAM3Bxa0fPV8bc8d200Xzflli
    4 minutes ago
Caroline

Carolineanswered the question Is sinusitis sign of an exacerbation?

I have severe seasonal allergies which almost always lead to a sinus infection. I have learned that I cannot tough it out with them and see my doctor as soon as possible. Untreated as Jean has mentioned they can lead to an exacerbation.

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question Is sinusitis sign of an exacerbation?

I have chronic sinusitis, I always seem to have a little inflammation at times that sometimes I'm even unaware of possibly due to being a prior smoker? My ENT doctor said it is linked to COPD, I may have two flare ups a year if that, I manage it right …

1 day ago

muddleaged

muddleagedanswered the question Anyone use sprivi respimat. Is it the same strength as the handihaler.?

They are supposed to be the same. I decided I don't like the respimat, and the spiriva (tiova) capsules are a reasonable price from all day chemist, so that's what I use. (I do use an old handihaler device, though, because I don't like the one supplied …

1 day ago

edpe77

edpe77Monday I bought a roasted chicken. I had the legs and some veggies. Tuesday I made a chicken & Swiss Cheese sandwich. Tonight it's cream of chicken. As  I didn't have any fresh milk, I used pulmocurt, added the chicken and peas. Poured that over toast. Tomorrow it's chicken soup in the Instant Pot! That's probably 10 healthy meals for a $1 each... and now they are just heat & eat.
ed

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain People that are new might find this helpful, videos on how to use this site.
https://www.copdfoundation.org/COPD360social/How-to-Participate/Video-Tutorials.aspx

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question Is sinusitis sign of an exacerbation?

A sinus infection can certainly lead to an exacerbation if you don't catch it quick and get it under control ASAP. See you do, get some meds and then get rid of it. Wqtch to be sure it doesn't migrate south into your lungs, because then you can certainly …

1 day ago

13reathe

13reathe

What are types of jobs that would be flexible for someone with COPD? I been on computer 30 years and feel the sitting quietly that long has been a big reason I have copd and I was wondering what people with copd do for work and how I might be able to get hired with a flexible company when I have bad days or exacerbate. I use Pro-Air puffer and Symbicort 2x a day as well and nebulizer around 4 p.m. for some odd reason. (puffer not enough at 4)

1 day ago

das23

das23answered the question Is sinusitis sign of an exacerbation?

I just had 3-4 days of a sinus issue---Stuffy-runny nose and all that stuff. Like clipper I used a saline rinse-kept hydrated and took it easy for a few days---Today I'm good-almost 100% Hope you feel better--you're Dr will let you know what's up---No …

1 day ago

Resurrected1

Resurrected1

Maybe you did not get the first part of my statement, I was introducing myself as a 65yr. old who was just diagnosed with COPD. Right now the Doctors really have not shared a lot with me only that I should use Spiriva and Albuterol. Personally I would like to hear more of my current condition and how it is treated, but for tight now it is important that I reach out for a support group to have someone to talk to and listen to also....

1 day ago

Resurrected1

Resurrected1

I wasn't finish typing yet, as I was saying I have no idea what to expect treatment wise, there is an element of fear of the unknown and just looking for folks to talk to who have an understanding of my feelings and thoughts. Just want to say Hello....

1 day ago

abmel

abmel

Did you find out the reason?

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Is sinusitis sign of an exacerbation?

No, a sinus infection is not a sign of an COPD exacerbation. I think was you read was misleading. But a sinus infection can potentially get into your lungs and that can cause an exacerbation. So just be careful, see your primary care, maybe you need …

1 day ago

ksuzn

ksuznanswered the question Is sinusitis sign of an exacerbation?

Hi Angie67, That is hard to say and the information you found online may not be reliable depending on the source. I guess it would depend on your history and what type of obstruction you have but even people without COPD get sinusitis with complications …

1 day ago


COPD360social posts are monitored by Senior Director of Community Engagement and COPD360social Community Manager, Bill Clark, as well as staff Respiratory Therapists.


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.