Community Announcements

Community Announcements

WEโ€™VE UPDATED OUR APP TO WORK FOR YOU โ€“ THE PATIENTS AND CAREGIVERS OF OUR COPD360SOCIAL COMMUNITY!

The COPD Foundation is thrilled to announce we have launched a FREE updated Pocket Consultant Guide (PCG) app -- with a new track for patients and caregivers. The app includes many helpful features for all living with COPD, including an interactive My COPD Action Plan and tracking calendar, exercise and inhaler videos, a wallet card to track important information, including medications and immunizations, โ€œFor my next visitโ€ prompts and reminders and much more!

Have you checked it out yet? You can download for free!

The app is available to both Android and iOS Smartphone users. Follow the links below on your phone or search for the COPD Pocket Consultant Guide wherever you get your mobile apps.

iOS: https://apps.apple.com/us/app/copd-pocket-consultant-guide/id688671199

Android: https://play.google.com/store/apps/details?id=org.copdfoundation.pocketconsultant&hl=en_US

Leave us your feedback in the comments below!

3 weeks ago

K STEELE

K STEELE

๐Ÿ˜‡โ˜บ๐Ÿ˜‹ Just had Chicken Salad Sandwich,  macaroni &cheese , &
Jello fruit cup & orange juice. Waiting for med time. ๐Ÿ’ƒKaya

35 minutes ago

NanaVicky

NanaVicky

Not a good , had a exacerbation, steroids , antibiotics, neb treatments,  oxygen 24/7, those ole steroids sure are hard on me with the side affects, but Iโ€™m going to fight it and get back on my feet , thanks for letting me share

1 hour ago

June89

June89

I new to this 

1 hour ago

Caroline

Carolineanswered the question Watch the webcast portion of the NHLBI's COPD National Action Plan Meeting Tomorrow!

I would like to second what clipper has said. What a great job Jamie.

3 hours ago

Peter.RT

Peter.RTIt was another great day today! Set up shop at Virtua Health Marlton Division, Marlton NJ. All my information was taken. Successful day!

3 hours ago

edpe77

edpe77answered the question Newer tests for COPD, etc.

Thanx for the reference. Had not heardof these folks. I'll subcsribe, and see what else they have to say. ed

3 hours ago

netmouse

netmouseasked the question: Newer tests for COPD, etc.

Today's emailed article from COPD.net has some interesting ways to test to determine what the heck you have. I'd like to see the actual level of inflammation indicating COPD or the one indicating Asthma or both. https://copd.net/living/also …

4 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Good afternoon, folks. I have been resting. As careful as I am, somehow I have gotten a terrible stomach virus. I have never been so sick. There is no prescription for this mess. Lots of rest and plenty of fluids. Also- the BRAT diet.  Hoping you all are doing well! Sending hugs to everyone! DebbieB. โ˜บ

5 hours ago

RubyM

RubyM

Good morning all. My heart rate goes up and my breathing goes down whenever i just even go to the restroom. Cant carry groceries in or stand to take a shower. Life is so differant now and not good. It hurts terribly. Had my heart checked and passed that. Also no lung cancer. Seems as tho im suffering. I just cant imagine it getting worse. Does this pain get worse? Does anyone know how to slow your hr fast when it goes up? Ty all.

6 hours ago

  • NewestOldest
  • clipper (Debbie) - NJ State Captain Have you talked to your pulmonologist about doing pulmonary rehab. I suspect that would help you a lot. It helped me.  I realize it sounds like it would be too much but the staff at pulmonary rehab will know how to help you and keep you safe. It is worth talking to your doctors about it. 


    When we get weak, it takes more energy to do the simplest things and that means we breathe harder, when we breathe harder our heart rate goes up. 6 hours ago
  • Caroline
    I had some pain around the neck region and was put on magnesium for that and to decrease muscle cramps.


    I would concur with clipper that you need to get into an exercise program that is approved by your pulmonologist.3 hours ago
Greg D

Greg D

Thank you everyone for the support! Wow...I never expected that.   Trying to keep busy and keep my mind off the COPD...I keep busy by going on my ham radio and talking to people around the country and world.    My family doctor nor my pulmonologist never gave me information on where I can find out more on COPD....so, I believe I now found the right location.

6 hours ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Watch the webcast portion of the NHLBI's COPD National Action Plan Meeting Tomorrow!

I have been watching this stream on and off this morning. I did manage to catch Jamie who did a wonderful job presenting. In particular, for emphasizing the role of the patient in research. Your presentation made that clear. Thank you for everything.

7 hours ago

MissyC

MissyCanswered the question Copd and mental illness

Ok thank you.

8 hours ago

Kenny A

Kenny A

Good Morning 360


I have been on the IR but starting to recoup.
I was not felling right so went to pulmonologist and was diagnosed with a collapsed lung
Not Fun !!!
During this time I also some how got an infection ๐Ÿ˜ž
Now as we all know COPD is a challenge in its self but I got a tell ya this is my bottoming out and I can't wait till I am able to move on 
Wishing everyone good health and happiness.
Take care of yourself 
Went for follow up yesterday hoping in a week I will back .till then โœŒ๐Ÿ’›๐ŸŽธ
Thank God for my best friends my Wife and of course my ๐Ÿ• Bella ( who has not left my side and had a meltdown while I was in the hospital

8 hours ago

Vinny M

Vinny Manswered the question Profile pic is driving me bananas!

Hi Sassycat - It's possible your image is too large. Try uploading an image no larger than 2MB.

8 hours ago

Bill Clark - Community Manager

Bill Clark - Community Manageranswered the question Newbie with questions

pulmonary rehab can help at pretty much any stage. It will not improve her lung function, but it will build up her muscles so they work more efficiently and not require as much oxygen to function which in turn would help her to be less breathless on …

8 hours ago

netmouse

netmouseanswered the question Hi everyone! Can you guys help me understand these results?

Sassycat - there 2 kinds of asthma, I understand. What we've called (true) asthma is restrictive. Chronic asthma that does not change with drugs is obstructive (COPD).

8 hours ago

Bill Clark - Community Manager

Bill Clark - Community Manageranswered the question Why do I have to go on oxygen at least once a year

It could be a lot of things, like change of weather, allergies or even a small exacerbation. This is something you should talk to your doctor about

8 hours ago

Bill Clark - Community Manager

Bill Clark - Community Manageranswered the question Copd and mental illness

Fear panic and anxiety often go along with a diagnosis of COPD. Best if you talk with your doctor about this if you are experiencing any of these symptoms.

8 hours ago

Community Announcements

Community Announcementsadded a new article New Research Gives Hope for Slowing Progression and Mortality of Fourth Leading Cause of Death

WASHINGTON, DC--Research published yesterday suggests that we may be able to finally find a way to slow disease progression and provide preventative measures for the first time to individuals at risk of developing the 4th leading cause of death in the United Statesโ€”chronic obstructive pulmonary disease (COPD).

In a bold proposal that challenges decades-old criteria, the new research analysisโ€”published in the peer-reviewed Chronic Obstructive Pulmonary Diseases: Journal of the COPD Foundationโ€”proposes to expand the criteria by which smokers are diagnosed with COPD which affects an estimated 30 million individuals in the U.S. alone (15 million diagnosed, another 15 million estimated to be undiagnosed with the disease).

Using the new criteria proposed in the published article would enable treatment to be provided earlier to slow or halt disease progression before disability or irreversible lung structural changes occurs. This new proposal comes from the COPD Genetic Epidemiology (COPDGene) studyโ€”a 21-center study of 10,000 individuals supported by the National Institutes of Health and begun in 2007.

9 hours ago

Lorrie State Captain of South Mississippi

Lorrie State Captain of South Mississippi

Mornin y'all 
Boy Oh Boy
Is it cold , the bird bath's are a solid block of ice. We got ta 24 degrees last night.  And the wind has be howlin.
I'm sure ta lots of ya'ens ya thinkin that's not cold , But oh yes it is . We have had a 50 degrees difference in less than 48 hours. Ole man winter needs ta take his ole butt some where's else. And if all days of me just doin me here at home,  I have a Doctor's appointment taday , and no warm clothes ta wear.  Ya'ens all stay warm and cozy.  And remember ta keep drinkin enough , cause these temperatures and usin heat can definitely leave ya feelin SOB  in large part ,  ta what I have found ta bein dehydrated.  Take care have a Blessed and Beautiful day. 
Ya Friend
Lorrie 

9 hours ago

Kattlyne

Kattlyneanswered the question Hi everyone! Can you guys help me understand these results?

thanks sassycat. But i cant help but wonder why i had so much shortness of breath? The doc that read my pft results said "mild obstructive airway disease. And mild hyperinflation. "

9 hours ago

Kattlyne

Kattlyneanswered the question Hi everyone! Can you guys help me understand these results?

Thanks sassycat! Does my results show restrictive?

9 hours ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Hi everyone! Can you guys help me understand these results?

Remember Kattlyne we are not doctors here so the only interpretation of that report that matters is the one your pulmonologist provides. Here is my take. The Pre % Pred stands for โ€˜pre treatment % predictedโ€™. For the test they take the measurements and …

10 hours ago

MissyC

MissyCasked the question: Copd and mental illness

Is there anywhere specific online the I could get information on copd abd mental illness, fear, panic, and anxiety?

19 hours ago

MM4

MM4answered the question Heart rate vs O2 saturation

If this is bad, then I'm in trouble. Mine is frequently over 100 when doing stuff but my o2% is fine and I feel good. It it depends on how much im exerting myself. It drops back down at rest just fine. (Not on o2...yet and fev1 is mid 30s)

19 hours ago

Jamie Sullivan

Jamie Sullivanasked the question: Watch the webcast portion of the NHLBI's COPD National Action Plan Meeting Tomorrow!

The COPD Foundation will participate in the COPD National Action Plan: Tracking Our Progress meeting, hosted by the National Heart, Lung, and Blood Institute on November 13, 2019, at the National Institutes of Health in Bethesda, Maryland. I will be on …

20 hours ago

Greg D

Greg D

Joined this web site, just thought I would learn more...tired of COPD and wearing oxygen 24/7.   Thought retirement would be better then carrying around an oxygen concentrator.  Thing is...a lot of the COPD was caused by inhaling toxic chemicals for year from my past employer.   I know my condition is getting worse...getting tired from doing small things.

20 hours ago

JeanO53

JeanO53

Chawaneyโ€‹ - Welcome to 360Social.
No, you're not being silly.  If there's damage to your lungs, you should not forget about it  The earlier you have a clear diagnosis of what's going on in your lungs, the sooner you can put together a treatment plan.    My suggestion is that you see a pulmonologist; pulmonary function tests, or at least a spirometry test is needed in order to diagnose COPD.

23 hours ago

K STEELE

K STEELEanswered the question Profile pic is driving me bananas!

I had the same problem with my Cell phone. Finally gave up and Used the watercolor I painted. It accepted that picture. Would Not accept my name because of English name and Native nickname. Remember computers & Cell phones are logical not …

1 day ago

K STEELE

K STEELE

๐Ÿ˜Œ Have you been diagnosed with COPD or another breathing illness by a pulmonologist?  Welcome to 360 social.  Hope you have something to contribute to the activity feed and not just curiousity.๐Ÿ’ƒ

1 day ago

edpe77

edpe77

Tuesday Tip - "But exercise to me is unpleasant and uncomfortable" rebuttal - So is heart
surgery! {or in our case an exasperation!} From an AARP article discussing low grade inflammation.
ed

1 day ago

breathe for today

breathe for today

Hi Everyone,  Has anyone's Doctor ever told them to put antibiotic cream in their nose before going out in public?   A person with COPD said this.  Just curious.   Breathe

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain

I do that co-pilot program with Temple Lung and my peak flow hasnโ€™t been spectacular lately. I guess today it was too low. They are calling in prednisone to my pharmacy. I see a new pulmonologist Friday. I am not doing anything until after that. I just donโ€™t feel that different. My exercise is the same.  On Sunday I was doing deadlifts. I think the cheesy plastic peak flow thing is wrong. Maybe itโ€™s good I am seeing someone Friday even if they are new. 

1 day ago

Grandma05

Grandma05answered the question Spirometry test

Hi lungguy, I get all mixed up with this terminology,. I definitely know for sure that my fev1 was 73% and not the predicted. The nurse doing the test said it was a normal spirometry test and I didnโ€™t need inhalers

1 day ago

Lungguy

Lungguyanswered the question Spirometry test

A minor transcription error. Your FVC is probably 3.25 liters (109% predicted). What is the 72%; your FEV1/FVC or your % predicted FEV1? Sometimes radiologists get over zealous calling mild emphysema or hyperinflation. Neither are clinically important …

1 day ago

K STEELE

K STEELE

๐Ÿ˜๐Ÿ˜–๐Ÿ˜‡ Freezing down here. Aching from joints pulled when I fell Sunday. Praying for KennyA. 
Poor sleep last night has me thinking in slow motion. Kaya ๐Ÿ’ƒ

1 day ago

LisyLu

LisyLu

I am 47 years old and I was just recently diagnosed with COPD. My PCP gave me absolutely no information about what it really meant for me. She gave me a prescription for Spiriva and that's about it, no nothing. All that i have learned about it has been from this website. I am very confused. I don't know if I should be planning my funeral or what. I don't know which way to go with this diagnosis.  Any suggestions?

1 day ago

  • NewestOldest
  • clipper (Debbie) - NJ State Captain Definitely do not plan your funeral. Click on the Learn More option from the menu above, there is lots of good info there. No offense but a good PCP would not of given you an inhaler and sent you on your way without taking the time to explain things. Did you at least get a spirometry test? How were you diagnosed? I would get a referral to a pulmonologist. 


    There are a few golden rules. Follow them and the odds are very good that you can remain stable for a long time and live a decent quality of life well into your 70s and beyond. If you smoke, stop right away. That is the single most important thing you can do to slow down the progression, even stop it for some extended period of time.  Eat healthy, a mediterranean diet is recommended, at least aim for it. Exercise, very regular exercise consisting of 30 mins or aerobic close to every day and weight training of some kind at least twice a week along with some stretching.  1 day ago
  • Jean IA State CaptainHow were you diagnosed?  If you didn't have a breathing test, either a spirometry or pulmonary function test, your diagnosis is just a guess.  Maybe a good, educated guess, but still a guess.  With all due respect to PCPs most of them have no idea of how to treat COPD, what the best meds are, when to prescribe them, what other treatments there are, when to prescribe them........yadda, yadda, yadda.  Your PCP probably didn't tell you anything because she didn't know anything.


    Get a referral to a pulmonologist or just make an appointment with one.  Ask for a complete diagnostic workup, which should include a spirometry or PFT, blood work to determine whether  Alpha-1 antitrypsin deficiency is part of the equation, possible a CT scan and maybe a six minute walk if there's any chance you need supplementary O2.  Get copies of the test results and be sure someone explains them to you in ways you can understand and shows you which values help determine your diagnosis.  Be sure you know what meds are prescribed, what they're designed to do and how long it will take for them to begin to do their work.  We take maintenance meds and you don't feel them beginning to work; sometimes it takes up to a month and it's so slow, you don't even realize they are helping.  The most important question for you to ask is "What can I di to help myself"?


    That's when you'll begin to hear about no smoking, exercising daily, watching your weight and healthy diet.  The life-style changes we make have far more positive effects on our ability to function than anything else.  Meds just deal with symptoms; that's all.  Life style changes actually make your heart and lungs function better because they're way more efficient; well toned muscles use a lot less O2 than weak flabby ones.  


    There's lots to learn and a lot of good experience here.  Ask questions and let us know how things are goin ...1 day ago
  • KattlyneHi, Lisylu! I know exactly how you feel. (Im 49, btw). My doctor hasnt told me anything either and everything Ive learned has been on this site. My doc did order a ct scan and lung function tests. The ct scan showed some scarring and air trapping and the lung function test results said mild copd and mild hyperinflation (whatever that means). Because of the "mild" part, he wont refer me to a lung doctor. He has never explained copd to me or gave me any advice on how to proceed from here.  It may be mild, but I had a terrible flare up in August which has gotten better but i still have uncomfortable symptoms and feel i need to see a specialist. I have never been the same since august. I use albuterol inhaler and sometimes a nebuliser. Everyone on here has been great trying to help me understand things. They told me about pursed lip breathing and it really helps when i feel short of breath
    I took their advice and quit smoking last month. If you're smoking please quit right away! I smoked 35 years and cold turkey was the only way for me. Tapering off was just impossible. I was a chain smoker and if i can quit...anyone can. I wish you all the best! I hope you get the answers you need so.you can best take care.of yourself. 20 hours ago
clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain http://www.rtmagazine.com/2019/11/new-diagnostic-criteria-proposed-copd/

1 day ago

Grandma05

Grandma05answered the question Spirometry test

Il definitely be keeping my appointment in January, thank you for replying x

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Spirometry test

My take on this, follow Jeans advice and keep that Jan appointment with the lung specialist. It canโ€™t hurt to keep that appointment.

1 day ago

Grandma05

Grandma05answered the question Spirometry test

Does that mean I have got emphysema cause they said it was normal result and I didnโ€™t need any medication or any further investigation x

1 day ago

Jean IA State Captain

Jean IA State Captain

Saw my pulmonologist today.  In August, I was at the U of Iowa for my 10 year follow-up for the COPD Gene study and they did CT scans as they always do.  This time, there were two nodules they pointed out that had changed a bit from  the scans taken in 2014.  My doc and I reviewed the scans, and he pointed out the two they mentioned (and I have lots of other nodules that are scattered and haven't changed any).  The changes in both are really small,  and we don't know if they changed very slowly over the five years or if the changes were just before I had the CT scan done.  Because of that we will do a CT scan in late Jan/early Feb. to see if there are more changes.  If there are, then I'll get concerned.  Since I've got all these nodules that haven't changed at all in five years, I'm not very concerned, nor is my doc, about these two.  I will not lose sleep over these!


He also talked about the bronchiectasis, which has been noted in all my CT scans, but no one has ever talked with me about it and I never remembered to ask.  I decided since I wasn't getting sick, didn't have a regular productive cough and showed no other signs of bronchiectasis that it was dormant/inactive and not a problem I was going to be concerned about.  He confirmed that today and said he saw no signs of anything, and no mucous plugs, no activity, no nothing.   It was nice to have my conclusions on both issues confirmed!!


I also got to tell him a little about the RELIANCE study and our training last week and about my presentation at the Drug Information Association's conference in Boston on Thursday.  He loves that I can do this and told me that his job was to help me stay as healthy as possible so I can continue to do everything I do.

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question Spirometry test

Those numbers indicate very mild COPD if any. Continue to exercise, watch your weight and you should feel wonderful!

1 day ago

Vinny1011

Vinny1011answered the question Heart rate vs O2 saturation

Happy feedback should be the ONLY feedback. 😎 All is good! Ditto to everything.

1 day 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.