COPD360social welcomes new member acmillerRT who joins 62,108 current members of our community. Weโ€™re glad you're here!

Coach Brandon - Community Manager

Coach Brandon - Community Manager

Honoring Those Weโ€™ve Lost โ€“ Carrying Their Spirit Forward

In our COPD360social community, weโ€™ve shared stories, struggles, laughter, and hope with so many incredible friends. But along the way, weโ€™ve also felt the deep loss of those who are no longer with us. Their absence leaves a voidโ€”one that we feel in every conversation, every shared experience, every moment of support.

While they may not be here physically, their spirit remains in the wisdom they shared, the encouragement they gave, and the kindness they showed. The best way we can honor them is by continuing what they startedโ€”lifting each other up, offering advice, sharing our breathing journeys, and keeping this community strong.

Letโ€™s keep their legacy alive by stepping up, just as they would have. Letโ€™s offer hope to the newly diagnosed, comfort to those struggling, and a listening ear to those who need it. COPD360social isnโ€™t just a community; itโ€™s a family. And like any family, we carry on in the spirit of those we love and miss.

They may be gone, but through us, they will never be forgotten. ๐Ÿ’™

1 week ago

Maggie gant

Maggie gant

Hi everyone, my first time on here, i have Asthma copd overlap syndrome,  but am i allowed ro aak a question about my husband who has severe emphysema. He has recently been put on oxygen 24/7, he has a red card as he is a retainer of Carbon Dioxide.  The question is regarding his pip payments. 

14 hours ago

DebbieB.-Connecticut State Captain

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

๐Ÿ€๐Ÿ€GREEN JELLO SALAD๐Ÿ€๐Ÿ€Two 14-ounce cans pear halves in juiceTwo 3-ounce packages lime Jello mix2 cups boiling water, divided 1 cup vanilla yogurtMeasure 1/2 cup of the juice from pears; set aside. Drain remaining pears. You can save the...

14 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy St. Patrick's Day!
๐Ÿ€๐Ÿ€๐Ÿ€๐Ÿ€

20 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captain

Had a very odd experience with Hawaiian Air today. They said it was ok for me to use my O2 EXCEPT for takeoff & landing. The flight attendant anted me to remove my O2 30 minutes prior to landing but I objected and said it would cause my O2 levels to drop and that was too long for low O2 levels. She later said the pilot said I could wait for last 5-10 minutes prior to landing. 


All in all, I found that extremely odd and the only flight ever where I was told I had to stop using my O2 for takeoff and landing. Iโ€™m thinking of writing to the airline about this issue as I think it could be pretty uncomfortable and even dangerous for passengers needing O2. 

21 hours ago

TrishAnne

TrishAnne

๐Ÿ˜€Hanging in there! ...  trying to stay in good spirits even though I was just diagnosed with end stage IV COPD.   Was diagnosed about 8 years ago with the condition, but didn't know just how bad it had progressed since then.  My lung capacity is only 23% - so really trying hard to extend my life as much as possible.  Pulmonary Specialist gave me a time line for years for life to be expected - it's not good news at all.  But as I said, trying to keep my head up and do what I can when I can.   Had to change careers too from an active and enjoyable position, to a desk job ๐Ÿ˜ž not happy about it,  but still working and won't go down without a fight !!  Breathing is not something to be taken for granted - the most common thing can be the most difficult when you're unable to do the "common, normal thing".  Sometimes, especially during an exasperation , I feel like a fish out of water. 

1 day ago

Badstage

Badstage

Hello all.


I have an appointment with pulmonology on the second of April. I had a ct scan done year ago which they found nodules that they said were very unlikely to be malignant. But also on the scan there was emphysema which was never mentioned to me and continued smoking a pack a day for close to year. The original reason I went in was for abdominal pain. Had I known i had emphysema I would have quit smoking right then. But a year later I had the Same abdominal pain. And I went to the doctor and she mentioned the emphysema. And had another scan and itโ€™s apparently worse. 


. But I have had mild shortness of breath just sitting. I thought it was anxiety due to my abdominal pain for months. But now that I know itโ€™s emphysema I really notice it. Iโ€™m 45 and Iโ€™m thinking Iโ€™m in a later stage. Definitely very scared. I quit as soon as heard that I had emphysema, as I have wanted to anyway. But Iโ€™m never sick and I work in busy restaurant waiting tables with no issues. Same phlegm Iโ€™ve always had. And occasionally I cough. Doing all normal activities just fine. But the shortness of breath at rest, especially when laying down has me thinking itโ€™s pretty advanced.


Yes I know self diagnosis is very bad. But itโ€™s almost impossible not to do. Iโ€™m just so sad they didnโ€™t say anything. And that I didnโ€™t read it on the scan notes.


I can wait to see what is found out. As Iโ€™m the glue that keeps everything together for my family. Already trying to get things sold.


Idk if Iโ€™m asking anything really, just talking out loud as I havenโ€™t really told anyone. 


Thanks
 Joshua

1 day ago

DebbieB.-Connecticut State Captain

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

๐Ÿฅ›WARM ALMOND MILK๐Ÿฅ› 2 cups unsweetened almond milk2 tsp. vanilla extract 2 tbsp. pure maple syrup1/8 tsp. cinnamon Combine all ingredients in a small saucepan. Place over medium-low heat. Warm, while stirring, for 3 to 5 minutes, until...

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainWishing everyone a beautiful Sunday!
Every time you smile, your day continues to get better, so keep on smiling, friends! ๐Ÿ˜€

1 day ago

Score

Score

Thanks for the support. I am not giving up.

1 day ago

Score

Score

Not well in the middle of a COPD exacerbration

1 day ago

Caroline West Virginia State Captain

Caroline West Virginia State Captain

I did not do the chair yoga yesterday, but walked for an hour.  I will only post about my 28 day challenge when it seems different, but I will continue the challenge.

2 days ago

Brittishere

Brittishereanswered the question Please help-Iโ€™ve been diagnosed with COPD with hypoxia.

Do you have Chronic Bronchtis or Empysema or Both? If CB or Both, and if youโ€™re not already, please try a daily inhaler medication like Breztri or Trelegy or Advair+Spiriva. I pray you at least have albuterol (fast acting bronchodilator). You may need it …
TonicDkHIcopd - Hawaii State CaptainCaroline West Virginia State Captainand 1 other also answered the question TonicDkand 3 others also answered the question

2 days ago

Ann P

Ann P

diagnosis, Bronchiectasis and Mac infection.  Is this an appropriate group?

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Saturday! May your day blossom into something spectacular! ๐Ÿ˜ƒ

2 days ago

MegGirl

MegGirl

Hi. I was just diagnosed with severe COPD. Can I get any info from anyone with this diagnosis. 

2 days ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captain

Iโ€™m very happy!  Last night we received 2 replacement โ€œbarbsโ€ for the Inogen one G5. It was really pretty easy to remove the broken one with needle-nose pliers & replace with one of the 2 new replacements. The cannula fit perfectly and since then Iโ€™ve been fine. 


There is a tool available from Inogen or others with the replacement barb (that H originally said was a nipple) that you attach the cannula to. Happily the needle nose pliers BIL had worked perfectly. 


So glad this G5 is pretty easy for patients to service rather than having to mail in and potentially wait a long time for a return. Sadly my stationary concentrator continues to beep and need service. Will send it back when we get the return label with postage when the replacement machine arrives. 

3 days ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State CaptainSince it's still Fluffy Friday,  here's another picture of Ebony - I'm going on a trip, and she seems to think that I forgot to pack her in the suitcase - after all, she WOULD fit, ๐Ÿ˜†

3 days ago

JeanO53

JeanO53Happy Fluffy Friday!
The duck and the deer having a conversation, sharing the same space at the pond.

3 days ago

Ken Benson-California Lung Health Advocate and State Captain

Ken Benson-California Lung Health Advocate and State CaptainPositive thoughts from Sunny Southern California on a rainy afternoon.

3 days ago

Phyliss DiLorenzo NJ State Captain

Phyliss DiLorenzo NJ State CaptainHalf of our advocacy group on bus # 1 going to  the Capitol.
IMPACT 2025

3 days ago

Phyliss DiLorenzo NJ State Captain

Phyliss DiLorenzo NJ State CaptainMyself with COPDF CEO Jean Wright and her son.

3 days ago

Phyliss DiLorenzo NJ State Captain

Phyliss DiLorenzo NJ State CaptainMyself with fellow NJ State Captain/Advocate, Jessica Madiraca and Sen. Andrew Kim.

3 days ago

Phyliss DiLorenzo NJ State Captain

Phyliss DiLorenzo NJ State CaptainHereโ€™s a photo of bus #1 taking the first half of our group of advocates up to Capitol Hill for IMPACT 2025. 

3 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Fluffy Friday from the one and only Johnny Rocket! ๐Ÿš€ 
Have a wonderful day, friends! ๐Ÿ˜€

3 days ago

Caroline West Virginia State Captain

Caroline West Virginia State Captain

The chair yoga today was called " Go to Bed" so I waited until this evening.  I think that it was a little strenuous for a bedtime routine, but we will see how I sleep.

4 days ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Recommendations for constant flow oxygen concentrator

So much depends on what your needs are. Do you need O2 just for sleeping? Do you need O2 for altitude? Exercise? What flow rate for each activity & for sleep? I just got this new machine and like how quiet it is. Itโ€™s a DeVibliss 5 liter quiet unit …
Jonnie Korinko (COPDF Manager of Public and Professional Education)Coach Brandon - Community Managerdas23 also answered the question Jonnie Korinko (COPDF Manager of Public and Professional Education)and 2 others also answered the question

4 days ago

Nicky_SE

Nicky_SEanswered the question Questions about my struggle with exacerbation

Thanks
Jonnie Korinko (COPDF Manager of Public and Professional Education) also answered the question Jonnie Korinko (COPDF Manager of Public and Professional Education) also answered the question

4 days ago

baileymccrary

baileymccraryHello all! On March 5, 74 COPD and BNTM patients, caregivers, loved ones, healthcare providers, and COPD Foundation Team members traveled to the United States Capitol in Washington, D.C. to meet with our lawmakers and urge their support for our policy agenda. We had 105 meetings with offices representing 26 states, 53 House districts, and 52 Senate districts. We spoke with our lawmakers about three critical priorities:
- Co-sponsor H.R. 783 / S. 248 to enact permanent Medicare coverage for virtual pulmonary rehabilitation.
- Co-sponsor the Supplemental Oxygen Access Reform (SOAR) Act to ensure Medicare patients have access to essential oxygen therapy.
- Protect FY26 NIH funding and promote innovative COPD treatments by prioritizing early disease research at NHLBI and patient-focused outcome measures at FDA through appropriations report provisions.

We are incredibly proud of our team of advocates and the progress we made together for lung health in Washington, D.C. If you would like to virtually support IMPACT 2025, you can urge your lawmakers to support our policy priorities by visiting our Advocacy Action Center: https://www.votervoice.net/COPD/Campaigns/123363/Respond

We want to extend a special thank-you to our sponsors who made IMPACT 2025 possible! Thank you to Chiesi USA, Inc., Insmed Incorporated, Sanofi/Regeneron, Theravance Biopharma US, Inc., Verona Pharma, and Viatris. Your support is greatly appreciated!

4 days ago

Mike Hess, RRT (COPDF Senior Director of Public Outreach and Education)

Mike Hess, RRT (COPDF Senior Director of Public Outreach and Education)answered the question Any thing new on controlling phlegm BEFORE you get too much?

Hi, Richard! There's a lot of good information at the links Vinny provided. Unfortunately, once the airways are injured enough to get to the point where they're always making too much mucus, it's hard to turn back that clock. Making sure you're drinking …
Vinny M also answered the question Vinny M also answered the question

4 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.