Coach Brandon - Community Manager

2 days ago

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  DebbieB.-Connecticut State CaptainI strongly believe that we first need to be honest with ourselves, before we can be honest with others.
  I learned long ago that if I started feeling an exacerbation coming on, to contact my pulmonologist ASAP. No reason to be in denial. Nip it in the bud. Let's be honest-Who wants to end up in worse condition?
  Remember, folks...Honesty is the best policy.1 day ago
  Caroline West Virginia State Captain,Mellie,LFAOMGA and 7 other people

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  HIcopd - Hawaii State CaptainIt’s been hard to REALLY pace myself and not add just one more thing to my list of errands. It has made a difference and helped me stay healthier by listening to my body and knowing when to leave things for another day or another time. Pacing is really an art in progress. 1 day ago
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  Coach Brandon - Community Manager100% true, Val! That line really stood out — ‘pacing is really an art in progress.’ So well said!1 day ago
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  Caroline West Virginia State CaptainVal, this has been a hard skill for me to learn and I am still not very good at pacing.8 hours ago

Coach Brandon - Community Manager💬 Let’s Talk: How do you recognize when your COPD is changing?

Sometimes the earliest signs aren’t always obvious—and that’s where this community really shines. The little things you’ve learned to notice over time might be exactly what helps someone else connect the dots sooner.

We’d really love to hear from you—whether you’ve been here a while or you’re just getting started. Every perspective matters.

👉 What’s the first thing that makes you pause and think, “something’s not quite right”?
👉 Are there symptoms that tend to show up for you when things are worsening? (breathing changes, more mucus, fatigue, etc.)
👉 When you talk to your doctor, how do you describe what you’re feeling?

If you’re newer here, this is a great way to jump in—no pressure, just share what you’ve noticed or even what you’re still figuring out.

⬇ Add your thoughts in the link to our Q&A below so others can learn from your experience and come back to it when they need it.

You never know… your comment might be the one that helps someone else take that next important step.

https://www.copdfoundation.org/COPD360social/Community/Questions-and-Answers/How-do-you-know-your-COPD-is-getting-worse.aspx

How do you know your COPD is getting worse?

What symptoms worry you the most when this happens (for example, trouble breathing, more mucus, coughing, chest feeling tight, etc.)? How do you tell …

4 days ago

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  DebbieB.-Connecticut State CaptainI can tell when my COPD is behaving badly.
  I start having chest tightness. Shortness of breath starts occuring on a regular basis.
  That's when I contact my pulmonologist to see what the next step should be. Since I have very severe asthma, it's important to check in with my doctor.
  I drink plenty of water, wear a filtered mask as needed, and take my medications as directed by my pulmonologist. 
  I maintain a positive outlook. Always focusing on the good things! No panicking here! I use my common sense.4 days ago
  Mellie,Amelia (Millie ) ❤️,LFAOMGA and 7 other people

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  Coach Brandon - Community ManagerWe’re hoping to see some great comments over in the Q&A link — we’d love to hear your thoughts! Thanks Debbie, and thank you all for always stepping up and sharing when we ask these questions.
  https://www.copdfoundation.org/COPD360social/Community/Questions-and-Answers/How-do-you-know-your-COPD-is-getting-worse.aspx

  

  How do you know your COPD is getting worse?

  What symptoms worry you the most when this happens (for example, trouble breathing, more mucus, coughing, chest feeling tight, etc.)? How do you tell …

  4 days ago
  Mellie,LFAOMGA,Claudya G. and 7 other people

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  DebbieB.-Connecticut State CaptainYou're welcome, Brandon!
  We would love to hear from our members. Which tips do you have to share with the community, on how you get through these type of incidents?
  4 days ago
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  Karen Deitemeyer - Florida State CaptainI'm somewhat like Debbie - my chest gets tight, my breathing gets worse than normal (it's never very good anyway) and I also become fatigued.  If I've been exposed to smoke or other fumes, then my throat also starts to get sore.  Then I reach for my prednisone and antibiotic and call my doctor to let her know I've started on my medds.4 days ago
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  Patient 007Hi!I'm new here. I am reading all the comments and I have all the symptoms described here. I was diagnosed over 30 years ago with Acute Bronchitis. In 2020 I started having other respiratory issues. Pulmonary Embolisms in both lungs. Ground glass opacity bilaterally.  Lungs diminished. Pneumonia. I was using an inhaler but kept ending up in the ER with respiratory issues and hypoxia. My O2 saturation would drop suddenly. It was horrible.  It was not Covid. In Nov 2020 I went to ER, was admitted and as a result of the ongoing symptoms I was referred to a Acute Care Pulminologist. She reviewed my records prior to my appt. At my appt she ordered a Bronchoscopy. I was diagnosed with a rare condition called Tracheobronchomalacia. The cartilage of the trachea becomes weakened, floppy and therefore collapses upon exhalation. My trachea was 90% collapsed at the time of diagnosis. Children are born with this condition and adults acquire it over their lifetime. To date most patients diagnosed with TBM have either been previously diagnosed with Asthma, Bronchitis or COPD. This condition is often mis-diagnosed, and mis-understood. There are only about 10 hospitals in the US that treat this condition & experienced in the Surgical procedure called a Tracheobronchoplasty. Either an open procedure or Robotic procedure are the options. There is no cure for this at this time. The surgery is an attempt to shore up the catilage walls of the trachea using mesh. I had my 1st Tracheobronchoplasty Robotically on 5/22 on my Right Distal Bronchus W/Dr Benjamin Wei at UAB in Birmingham Al, and it is still holding. Since then the TBM is now in my left distal trachea collapsed at 99% w/EDAC Excessive Dynamic Airway Collapse, and my Cervical Trachea collapsed at 40%. This was found on a Bronchoscopy done in May 2024. My recent Bronchoscopy done on 5/5/25 showed TBM was now in my Central Airways, collapse is 70% So this condition is progressive.I belong to a TBM group on FB.&nb ...4 days ago
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  das23Welcome aboard 007.....You have a lot going on. The info above-LEARN MORE etc. can help. Glad you found us. Lots of support here4 days ago
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  das23My COPD can be sneaky--My breathing may change a little-getting a little winded easier--Mucus may get harder to expel. I also have mild Bronchiectasis. I practice airway clearance. Since I've been doing this--NO chest infections!!!!  I also have meds on hand just in case and I call my doctor. Sometimes it's hard to tell if it's just a bad day or more serious---Always good to call the doc4 days ago
  Amelia (Millie ) ❤️,LFAOMGA,Claudya G. and 7 other people

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  Karen Deitemeyer - Florida State CaptainWelcome Patient 007​ - I'm very sorry to hear what you're dealing with.3 days ago
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  Caroline West Virginia State CaptainWelcome 007.  You will learn a lot and find great people here.3 days ago
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  Caroline West Virginia State CaptainMy symptoms are sometimes sneaky as Dave has said, but fatigue is a sure sign that something is going wrong.3 days ago
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  Bob puff dragonShortness of breath that just gets worse,chest rattles,chest tightness, worsening cough,,my wife telling me it's time to call the ambulance,,all good signs.3 days ago
  Amelia (Millie ) ❤️,TimD,LFAOMGA and 6 other people

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  Karen Deitemeyer - Florida State CaptainPatient 007​,  Your comment was cut off - you might want to post as a new post, since about 1/2 of what you wrote is missing.  (I can tell that from the email notification I got).3 days ago
  Caroline West Virginia State Captain,LFAOMGA,TimD and 4 other people

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  WildebeestFatigue is a pretty sure sign. So is an uptick in calories burned for no obvious reason. (I monitor this for fitness purposes and use an app for the purpose) I don't tend to get SOB even with a respiratory infection, nor do I get much mucus, but if that increases and I have a slight temperature that is also a danger sign. I take fatigue seriously these days and rest as much as I need to in the hope of staving off anything worse.3 days ago
  Amelia (Millie ) ❤️,Claudya G.,Caroline West Virginia State Captain and 6 other people

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