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Coach Brandon - Community Manager

Coach Brandon - Community Manager

๐ŸŽค Honesty Dayโ€ฆ letโ€™s talk about it.

Todayโ€™s a good reminder that sometimes the strongest thing we can doโ€ฆ is just be honest.

With COPD (and any lung condition), itโ€™s easy to fall into the habit of saying โ€œIโ€™m doing okayโ€โ€”even when things feel a little off.

But what if today we tried something different?

๐Ÿ’ฌ Being honest with your doctor
โžก โ€œIโ€™ve been more short of breath lately.โ€
โžก โ€œThis cough feels different.โ€

๐Ÿ’ฌ Being honest with your family or friends
โžก โ€œI need to take it easy today.โ€
โžก โ€œI might have to sit this one out.โ€

๐Ÿ’ฌ And maybe the hardest oneโ€ฆ being honest with yourself
โžก โ€œIโ€™m tired, and thatโ€™s okay.โ€
โžก โ€œI need a breakโ€”and Iโ€™m going to take one.โ€

Honesty doesnโ€™t mean limitationsโ€”it means understanding where you are so you can take the best next step forward. Sometimes that means resting. Sometimes it means speaking up. Sometimes it means doing the thing youโ€™ve been putting off.

๐Ÿ’ก Being honest can actually open more doors than it closes.

๐Ÿ’ฌ Letโ€™s hear from you:
Whatโ€™s one thing youโ€™ve learned to be more honest about when it comes to your health?

14 hours ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager๐Ÿ’ฌ Letโ€™s Talk: How do you recognize when your COPD is changing?

Sometimes the earliest signs arenโ€™t always obviousโ€”and thatโ€™s where this community really shines. The little things youโ€™ve learned to notice over time might be exactly what helps someone else connect the dots sooner.

Weโ€™d really love to hear from youโ€”whether youโ€™ve been here a while or youโ€™re just getting started. Every perspective matters.

๐Ÿ‘‰ Whatโ€™s the first thing that makes you pause and think, โ€œsomethingโ€™s not quite rightโ€?
๐Ÿ‘‰ Are there symptoms that tend to show up for you when things are worsening? (breathing changes, more mucus, fatigue, etc.)
๐Ÿ‘‰ When you talk to your doctor, how do you describe what youโ€™re feeling?

If youโ€™re newer here, this is a great way to jump inโ€”no pressure, just share what youโ€™ve noticed or even what youโ€™re still figuring out.

โฌ‡ 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 knowโ€ฆ 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 …

3 days ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captain

Well, crazy day. Was able to have tax office help me fix my excise returns so they are correct for 2025 earnings. The nice agent talked to his manager to help make it all correct. 


Then I got a concentrator that has a 2 lpm continuous setting (which I need for travel) and ran it for a bit and got an error message โ€œlow O2 purity,โ€ and the machine shut off!  Rested it & ran machine again with same result!  Called O2 supplier & will be getting brand new one sent to me immediately!  Fingers crossed new machine functions well!

46 minutes ago

Tutukane

Tutukane

As well as can be.

1 hour ago

David Mannino, MD (Chief Medical Officer, COPD Foundation )

David Mannino, MD (Chief Medical Officer, COPD Foundation )answered the question inhaler residue and ear irritation

I have not heard of this specifically, but do know that some people have problems with dry powder inhalers (or spiriva in the handihaler. You couls try spiriva in the soft-mist inhaler (respimat) or one of the meter dose inhaler medications.

2 hours ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State Captainanswered the question โ€‹What do you know about new COPD treatments?

Done
HIcopd - Hawaii State CaptainDebbieB.-Connecticut State Captain also answered the question HIcopd - Hawaii State Captainand 1 other also answered the question

7 hours ago

Jamie Jarrard

Jamie Jarrard created the event OxyTalk Social Hour - Wednesday, May 13, 4pm Eastern

A group for those on oxygen therapy. Send any questions ahead of time to oxygen360@copdfoundation.org. Register here: https://copdf.co/oxy-talk

8 hours ago

Jamie Jarrard

Jamie Jarrard created the event BronchandNTM360social Coffee Break - Thursday, May 7, 2:30pm Eastern

A group for those in the bronchiectasis and NTM lung disease communities. Register here: https://copdf.co/Bronch-NTM-support

8 hours ago

Jamie Jarrard

Jamie Jarrard created the event COPD360Social Hour & Harmonica Play-Along- Wednesday, May 6, 4pm Eastern

A group for everyone in our COPD community to make friends, catch up, and answer your most pressing questions. Bring your harmonica for a Harmonicas for Health play-along to take place after the group discussion. Register here: https://copdf.co/360 …

8 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captain

Yay!  Our legislature just passed a bill we have all been lobbying forโ€”no sales of disposable vape products in our state!  This will help reduce toxic litter in our state!  Iโ€™m very pleased. Our governor is an md supportive of tobacco control legislation and expected to happily sign this bill, perhaps in a nice ceremony. 


We have another bill that will be in conference committee. 

9 hours ago

Community Announcements

Community Announcementsadded a new article Phone-based education improves inhaler use in people with COPD

Teach-to-goal training via phone reduced incorrect inhaler use

Miami (April 29, 2026) - Guiding people on how to correctly use inhaled medications via a phone-based program can help improve technique, according to a new study in the March 2026 issue of Chronic Obstructive Pulmonary Diseases: Journal of the COPD Foundation, a peer-reviewed, open access journal.

Chronic obstructive pulmonary disease (COPD), which includes emphysema and chronic bronchitis, affects more than 30 million Americans and is the fourth leading cause of death worldwide. Many people with COPD use inhaler-based medications as part of their treatment plan; however, research has shown that most people do not use these medications correctly, which can reduce effectiveness and result in more frequent exacerbations.

This new study examined the effectiveness of implementing a teach-to-goal inhaler education program over the phone, specifically among Medicare Advantage beneficiaries with COPD. Teach-to-goal is an educational strategy that uses a teach-back approach in which individuals are asked to repeat what they were taught in their own words or demonstrate what they were shown. Additional rounds of demonstration and verbal instruction are completed until the participant can perform the technique correctly.

11 hours ago

netmouse

netmouseasked the question: inhaler residue and ear irritation

Have you heard of this related to inhaler dust? And what do you do about it? I developed irritation inside my left ear, which has haunted me for a few months. My primary doctor calls it ETD - eustachian tube dysfunction. Docter and ENT are guessing what …

12 hours ago

Tara Shedor, COPDF Communications

Tara Shedor, COPDF Communicationsasked the question: โ€‹What do you know about new COPD treatments?

Take our survey! We want to hear from you if: - you are over 18 years of age - have been diagnosed with COPD - are currently using any inhaled therapy The survey only takes about 5 minutes to complete. Take the anonymous survey: …

13 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

๐ŸฝRADISH SALAD๐Ÿฝ2 cups sliced radishes1/2 tsp. salt1 cup sliced red onion 1 cup seeded and sliced cucumber 1/2 cup olive oil2 tbsp. white wine vinegar 1 tsp. chopped fresh dill 1 clove garlic, minced 1/2 tsp. sugarIn a medium bowl,...

15 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Thursday, friends! Let's get that pep, vim, and vigor going! A can-do attitude guides us through the day, helping us to accomplish many tasks. 
Sending multitudes of positive vibes to everyone, here on 360Social! ๐Ÿช„ โœจ๏ธ 

19 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Is there a list of online pulmonary rehab clinics ?

Morlan Health has a virtual pulmonary rehabilitation program that serves an expanding area and is covered by many insurers and Medicare.
Damian Solorzano Aaron Stillwellstefb1and 2 others also answered the question Damian Solorzano and 4 others also answered the question

22 hours ago

eric63

eric63answered the question Has anyone used Wixela for COPD and if so, was it useful in relieving any symptoms?

I have COPD and have used both Advair and its generic replacement Wixela. Both work the same and they do help with relieving COPD symptoms.
TJ69Smokey100Ken Benson-California Lung Health Advocate and State Captainand 1 other also answered the question TJ69and 3 others also answered the question

1 day ago

Bob puff dragon

Bob puff dragonHappy hump day.

1 day ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

I wonder if the marinade could be used as a sauce and the chicken cooked in it in a crockpot?...

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

GRILLED CHICKEN WITH โ˜•๏ธCOFFEEโ˜•๏ธMARINADE"Great for the upcoming holidays..."Marinade:1/2 cup olive oil 1/2 cup balsamic vinegar 1/4 cup lower sodium soy sauce 1/2 cup brewed strong coffee1/4 cup Worcestershire sauce 1/8 cup lemon juice3/4 cup packed...

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy wonderful Wednesday! It doesnโ€™t matter what the weather is like outside. It can always be a sunny and bright day in your world. It's all in your mindset. Focusing on the good things makes each day a better day! 
Keep those positive vibes flowing! Youโ€™ll find that wearing a smile matches anything you decide to wear! Plus, a smile is one-size-fits-all!! ๐Ÿ˜ƒ

1 day ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question How do you know your COPD is getting worse?

A drop in saturation rates as measured by oximeter, difficulty maintaining saturation above 90% at rest (normally Iโ€™m up to 95%), discolored mucus (normally I have none or itโ€™s clear/white) are my normal signs of a flare up. Sometimes I can take it easy, …
TJ69eric63Richard DJand 5 others also answered the question TJ69and 7 others also answered the question

1 day ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager๐ŸŒธ VMCOTWW: Spring Has Sprung โ€“ Coming Tomorrow! ๐ŸŒฟ

Itโ€™s almost time for Visit My Corner of the World Wednesday, and this week weโ€™re leaning into all things spring. ๐ŸŒผ

So hereโ€™s your little heads-upโ€ฆ

๐Ÿ“ธ Start thinking about what you might want to share tomorrow!

It could be:
๐ŸŒณ Your favorite park or walking spot
๐ŸŒท Flowers starting to bloom nearby
๐Ÿฆ Birds or wildlife youโ€™ve been spotting
๐ŸŒ… A peaceful view from your porch or window
๐Ÿš— Or even a drive-by view that always makes you smile this time of year

No pressure, no perfect photos neededโ€”just a little piece of your world.

๐Ÿ’ฌ Tomorrow, weโ€™ll be sharing all things โ€œSpring has sprung,โ€ and weโ€™d love to see what that looks like where you are.

So keep your camera (or phone) closeโ€ฆ you never know when that perfect moment might pop up. ๐Ÿ˜‰

2 days ago

Kintsugi๐ŸŒฟ

Kintsugi๐ŸŒฟ

Hello to each of you๐ŸŒฟ๐Ÿ˜Š
I humbly thank each of you for your lovely  "Welcome!"
I have an appointment with an actual Pulmonologist in a few weeks! 
My brain is wired differently than most people ๐ŸงŸโ€โ™€๏ธ๐Ÿ˜‰ I am often talked at by health professionals. I need to process every word I am told, for me, there is constant input to process. Questions as to what to do, is there any help I can benefit from. Any programs? Any tools I can have that will help me to improve my breathing? Do not come to my immediately. You are my Resource ๐ŸŒฟ Thank You! ๐Ÿ˜Š

2 days ago

Bob puff dragon

Bob puff dragonToday is going to be a great day can just feel it....

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

๐ŸฅฃSPRING VEGGIE RICE๐Ÿฅฃ1 cup basmati OR jasmine rice2 cups water1/2 tsp. salt, divided 2 tbsp. olive oil 1 bunch asparagus, trimmed and chopped1 cup frozen peasLarge handful cilantro, chopped Juice of 1 lemonJuice of 1 limeAdd the rice to a...

2 days ago

GroovyLit

GroovyLit

I was first diagnosed with COPD in 2011. At that time, it was moderately severe. As expected, it did progress. In 2014 I stopped working after a year of precipitous decline -- only to improve to such an extent that I returned to work in 2016. In 2022, I stopped working again due to both my own health, and my elderly parents (my father died the same year). In 2024 I contracted Covid for the first (and then second) time and by the end of the year had been hospitalized overnight for acute respiratory failure. 


In 2025 I was diagnosed with non-allergic rhinitis, non-type 2 asthma, and common variable immunodeficiency. Last fall I was diagnosed with end stage COPD. 


Last May, I finally accepted I would be unable to go back to work in any capacity and applied for Social Security Disability. A couple of weeks ago I finally received a couple of packets of forms for both me and my husband to fill out and return, which we did. Last week I received another form -- the website says we should expect more forms for my husband to fill out.


I spoke to my Claims representative. At this point, she is gathering information to forward my application for medical review. That review will only take place once someone has been assigned to review it -- a process likely to take at least the nearly year it took for my representative to actually be assigned and review my application and supporting medical records (which I had provided proactively with my application). One a medical reviewer is assigned the website says the average time for it to complete is 328 days. My representative confirmed there will be yet another review by someone else before an initial decision is even made. 


Has anyone else applied for Social Security Disability due to severe or (like me) very severe COPD? What was your wait time like?

2 days ago

  • NewestOldestClick to View All Comments9 comment(s)
  • GroovyLitSomething I want to add, it isn't only that massive SSA and Medicaid funding shortfalls over the decades have resulted in across the board layoffs -- in deep red states like mine, SSA workers are paid far less than they are in other states, and open requisitions that do exist go unfilled. Then, once a decision is finally made, it is usually a denial, resulting in an appeal and hearing. I am married and my husband still works so that we can afford health insurance. If I were single I would be flat broke, my savings completely depleted, with nowhere to live, no way to move, no health insurance, no food... and would almost certainly be dead before my claim could be fully adjudicated. Add to that decades of failure to modernize the systems used by our bureaucracies and you end up with a nearly complete failure of a system I, personally, have been paying in to throughout 45 years of employment. I think so-called entitlement programs like Social Security, Medicare and Medicaid will not only continue to see priority focus in coming elections; I think actual action will be taken to strengthen those systems. Well, either that, or the government will simply keep the existing funds and end all three programs at once (worst case scenario... not that we haven't seen an awful lot of those lately).1 day ago
  • David Mannino, MD (Chief Medical Officer, COPD Foundation )Criteria for SSI with COPD depend on the degree of lung function impairment (generally needs to be FEV1 less than 50% - but varies a bot by height, etc)1 day ago
  • GroovyLitMy FEV1 was 25% at its best, last year. The year started at 21%. The last test was at elevation in Denver (I live in Austin) in August. My best there was 23%. I am 5' tall.
    21 hours ago
Clairaw

Clairaw

Hi ime new here.  My mum was diagnosed with copd dec 2010.  The last few months she is blacking out with 3 falls easter weekend with a 2 week stay in hospital.  She has brittle bone as well because of the meds over the years, so its taking her longer to recover from bruising at 83 its hadd enough.   She is on 2lt of oxygen round the clock.  Over the weekend my daughter came to stay so i could have a short break and her oxygen dropped to 83 and then spiked and carried in like that.   Last night i rang for an ambulance as her gp refused us palative care or acp.  I took her yesterday to see gp as shes very lathargic, forgetful, confused and eghasted.  I explained about the spikes and drops in her oxygen and he asked i ring lung health this morning.   Lung health wants me to put her oxygen back upto 2lt and leave her over saturated till 21st may.  Her oxygen went straight upto 98.  I dont know what to do as i am scared of loosing her 

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy terrific Tuesday, everyone! 
Wishing all of you the best day ever! Lots of reasons to smile! Plenty of things to look forward to! ๐Ÿ˜ƒ

2 days ago

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. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.