COPD360social welcomes new member dhoni who joins 63,377 current members of our community. Weโ€™re glad you're here!

Coach Brandon - Community Manager

Coach Brandon - Community Manager

We are pleased to announce that the Alpha-1 Foundation will be co-sponsoring our September workshop and supporting patient travel โ€“ and that registration is now live! We are calling on our patient advocacy groups to help get the word out to Alphas โ€“ we are prioritizing their presence, whether in DC or virtual.

Shaping the Future of AATD: Patient Perspectives to Drive the Next Decade of Innovation in Alpha-1 Antitrypsin Deficiency
A Workshop Presented by the Alpha-1 Foundation & the Critical Path for Alpha-1 Antitrypsin Deficiency (CPA-1) Consortium
Registration: https://cvent.me/RM8nRl
Monday, Sep 8, 2025 (10:00 a.m. to 3:30 p.m.)
Washington Marriott at Metro Center, Washington DC
C-Path CGIC Room Block available until 8/18/25

14 hours ago

Coach Brandon - Community Manager

Coach Brandon - Community ManagerCelebrating John Linnell

Weโ€™d like to take a moment to remember someone who made this world--and our community--a whole lot brighter: our friend and longtime advocate, John Linnell.

John wasnโ€™t just a powerhouse in the world of COPD advocacy--he was the kind of person who could light up a room with a story, a quick joke, or that signature grin. Diagnosed with COPD in 2005, he took that challenge and turned it into a mission: to make sure no one living with this disease ever felt alone or unheard.

And he didnโ€™t just show up--he showed out.
John served on boards like the U.S. COPD Coalition, EFFORTS, and Right2Breathe, was a State Captain for the COPD Foundation, worked on research teams from Johns Hopkins to the University of Illinois Chicago, and even reviewed research proposals for the Department of Defense. Wherever there was a seat at the table, John pulled up a chair and brought the patient voice with him.

But beyond the titles and accomplishments, John was a storyteller, a people person, and someone who just made things better. He could make you laugh when you needed it most, and somehow always knew the exact right thing to say.

He loved cooking, traveling, and spending time with his sweet wife, Barb. The two of them shared a beautiful bond that was easy to see and even easier to admire. And if John had the chance to be on a cruise? He was all in. So while weโ€™re missing him deeply, we like to think heโ€™s sailing off into the sunset--coffee in hand, cracking jokes, and making new friends on the most beautiful cruise of all.

John, thank you for everything you gave--to the community, to advocacy, and to all of us lucky enough to know you. Weโ€™ll carry your light forward and keep your memory close.


Bon voyage, friend. You are deeply missed and forever remembered!

5 days ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State Captainanswered the question Background mild emphysematous changes CT scan really anxious

Hi Dougal52 Welcome to 360Social! It's totally understandable that you are concerned about what you read on your CT scan, but, many radiologists will mention such mild changes, but in actuality, they do not mean that you have COPD. You need to make …
Dougal52JD85 also answered the question Dougal52and 1 other also answered the question

3 hours ago

MJ53

MJ53answered the question Portable Oxygen Concentrators

I use the inogen Rove 6 with a backpack or the cart whenever I leave the house. At home I am on continuous oxygen 24/7 at 3 to 4 liters depending on what I am doing. With the Inogen I use setting 2 when sitting in the car 3 to 4 when walking around …
WolffGroovyLitHIcopd - Hawaii State Captainand 2 others also answered the question Wolffand 4 others also answered the question

4 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State CaptainPlease join us for our 19th Annual COPD Education Day--free via zoom.  3:45pm-6:15pm, Eastern.  Link will be sent to all who register.

6 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State CaptainPlease join us for exciting events!  Meeting with APRN specializing in Pulmonary Wednesday, August 20, 4-6pm Eastern Time via zoom!

6 hours ago

DEE0627

DEE0627

I'm sorry, I'm new and I'm just trying to figure this all out.  I had a cardiac calcium scoring test done on Friday.  Good news it was 0. Bad news it showed emphysema. 2wks ago I went to the ER not feeling well all tests came back good.  Chest xray showed no acute pulmonary disease. I'm about to lose my mind.  I guess thank you just for letting me type this, haven't told anyone 

7 hours ago

JD85

JD85answered the question Terminology on CT Report

Hey, so a PFT is what you need to tell you what's really going on, I had my CT reviewed by a respiratory consultant and another radiologist and they stated that there had been an overcall on the CT and those changes were not present. But this is also …
Dougal52David Mannino, MD (Chief Medical Officer, COPD Foundation ) also answered the question Dougal52and 1 other also answered the question

8 hours ago

Dougal52

Dougal52asked the question: Background mild emphysematous changes CT scan really anxious

Hi I have just recently joined this site and I am super anxious about an incidental finding of background mild emphysematous changes affecting the upper and lower lobes bilaterally on a CT scan. I am 52 and have never smoked. I am currently extremely …

10 hours ago

Community Announcements

Community Announcementsadded a new article FDA Approves a New Medication for Bronchiectasis

This post was co-authored by the Bronchiectasis and NTM Association and COPD Foundation Education teams.

What is Bronchiectasis?

Bronchiectasis is a chronic (long-lasting) lung disease that causes the bronchial airways โ€“ the tubes that carry air in and out of the lungs โ€“ to become widened, scarred, and inflamed.1

10 hours ago

Maggie4947!

Maggie4947!answered the question I HAVE JUST BEEN DIAGNOSED WITH COPDโ€ฆNOW WHAT??

so what are you saying ? That inhalers donโ€™t help people with emphysema ? That they are really just for people with chronic bronchitis? I know people who just have predominantly emphysema so then why are they being given inhalers Iโ€™m really confused
AnonymousJeanAnnAnonymousand 10 others also answered the question Anonymousand 12 others also answered the question

13 hours ago

DebbieB.-Connecticut State Captain

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

๐Ÿฅ’CUCUMBER-HERB VINAIGRETTE๐Ÿฅ’ 1 small cucumber, peeled, seeded, and chopped 1/4 cup olive oil 2 tbsp. red wine vinegar 2 tbsp. chopped fresh chives 2 tbsp. chopped fresh parsley 1 tbsp. low-fat plain yogurt1 tsp. Dijon mustard 1 tsp. white...

17 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainWishing everyone a delightfully pleasant Tuesday! Let the breathing be easy, and the smiles be contagious! ๐Ÿ˜€

21 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captaincommented onBiologic Medicines for COPD: What They Are and Why to Use Them

There is of course CYA and there may be folks who get more side effects than others. For ME, the main side effect is fewer exacerbations and slight joint stiffness, called arthralgia, which is very manageable. ...

1 day ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State CaptainRecall of liquid soap, DermRite brand. https://apple.news/Ahf9aQlqZT0OWPHQ2NgVjgg

Hand soap recalled over contamination that could lead to sepsis: See where it was sold โ€” USA TODAY

The hand soap sold across the U.S. is being recalled after the presence of a potentially deadly bacteria was discovered in some of the product.

1 day ago

Barbara8645

Barbara8645commented onBiologic Medicines for COPD: What They Are and Why to Use Them

I have heard there are lots of bad side effects to biologics in general: mostly from the commercials themselves. How prevalent are these side effects, or do they have to list them to CYA?....

1 day ago

DebbieB.-Connecticut State Captain

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

๐Ÿฅ•๐Ÿฅ•๐Ÿฅ•CARROT RIBBON SALAD๐Ÿฅ•๐Ÿฅ•๐Ÿฅ•1 tsp., plus 1/2 tsp. salt, dividedIce water 32 ounces fresh rainbow carrots, peeled and trimmed1/4 cup thinly sliced yellow bell pepper1 tbsp. olive oil1/2 cup peeled and chopped yellow mango3 tbsp. lime juice2 tbsp....

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainMay your Monday be bright and cheerful! Wake up with a positive outlook, and keep wearing that smile throughout the day! Wishing you a splendid day, friends! ๐Ÿ˜€

1 day ago

GroovyLit

GroovyLit

Hi everybody. I returned from National Jewish after extensive lung and heart testing last week. I have end stage COPD and advanced atherosclerosis in my coronary arteries, aorta, and carotid arteries. I am scheduled for further testing (mainly around my vascular system) next month. I am also scheduled for a consult with a Cardiothoracic surgeon during the same visit to see if I pulmonary rehab can get me healthy enough for lung volume reduction surgery.


I am 59. My heart is actually still healthy, surprisingly. For now. At the start of the week my pulmonologist told me that both palliative and hospice care options are valid. She told me my risk of death in the next 5 years is very high. That was based strictly on my lung function tests. During my final visit with her we did not discuss any of that further, but she did say that if I can qualify lung volume reduction surgery could give me a few years before a transplant, and mentioned that anything we can do to delay a transplant would be good.


I am looking for actual patient experience with either surgery. Any regrets? Was it worth it? What was the recovery like, and how are you faring now?


Thanks much,


Rachel

1 day ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Financial Assistance

The Department of Health in your loved oneโ€™s state should be able to connect you with your office on aging and and the medicare and medicaid folks to help with what resources may he available in your state.
Karen Deitemeyer - Florida State CaptainCaroline West Virginia State Captain also answered the question Karen Deitemeyer - Florida State Captainand 1 other also answered the question

1 day ago

Herbster4

Herbster4

Just joined to research and try to understand what other people's struggles have been dealing with a loved one with end stage copd. My wife of 28 years has been diagnosed with stage 4 copd nearly 2 years ago. She's 58 years old and im doing my best to be her main care giver. Started hospice this past march. They visit once a week & sometimes bring along a social worker too. Just recently last week my wife had gotten extremely verbally abusive and delusional. Nurse came & suggested longer times with bi-pap use & another sedation type anxiety medication. Its helping a little. She had already been slightly delusional for a few months now. Now in a hospital bed set up in living room. Hardly any strength in her legs or arms. Difficult to lift her off of bed if needed. 

2 days ago

  • NewestOldestClick to View All Comments7 comment(s)
  • Caroline West Virginia State CaptainSending you praise for what you are doing.  You need to find a way to get away from the stress once in a while.1 day ago
  • brydyI am sorry to read of your wifes complicated health history Herbster. it is a lot for you & her to go through & I really hope you can get some help because you must be so exhausted physically & emotionally. are there any support groups in your area for caregivers that you could even join virtually if you arent able to leave your wife? it might help to connect with others & share thoughts/ideas in real time. sending my best wishes to you & your wife. 1 day ago
  • Herbster4Thanks for all that leave a reply. Im not all that teck savy. Not good with the whole email thing. Apologies if I mesg on someone's feed or something to that matter. The more I get on here I'm sure I'll catch on2 hours ago
Wolff

Wolffasked the question: Portable Oxygen Concentrators

tI am wondering what other people's experiences have been with Portable Oxygen Concentrators. I need to get one for travelling to visit family & friends who are quite a distance away. All the options and information I see is pretty overwhelming. Any …

2 days ago

Flamingo lady

Flamingo lady Iโ€™m currently on holiday in Portland /weymouth /uk and this is the stunning Durdle Door ๐Ÿ˜

2 days ago

JeanL

JeanLasked the question: Financial Assistance

My 71 year old sister-in-law is now oxygen dependent. She lost her job as a result. Her husband suffers with his own health issues and recently lost his job too. We are helping them get governmental assistance with food and Medicaid. They cannot survive …

2 days ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager

โ˜€ Good morning and happy Sunday! 


Hope your dayโ€™s starting off with something good โ€” maybe a hot cup of coffee, a snuggly pet, or just the luxury of not hearing an alarm clock blaring in your ear. 


Sundays are made for slowing down a bit, taking a nice deep breath, and finding a laugh in the little things. (Like realizing youโ€™ve been walking around with your shirt inside outโ€ฆ and deciding itโ€™s a bold fashion choice!) 


Hereโ€™s to a day of easier breathing, lighter hearts, and moments that make you glad you rolled out of bed. ๐Ÿ’› 


Soโ€ฆ whatโ€™s making you smile this morning?

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainWishing everyone a Sunday filled with goodness, peace, and smiling faces! Enjoy your day, friends! ๐Ÿ˜Š

2 days ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Retractable Oxygen Tubing: Do you use this?

There are people who swear by Softhose tubing. Iโ€™ve personally never tried it but those who have say itโ€™s definitely the best. Having green tubing so itโ€™s more visible is definitely an improvement over clear tubing. Itโ€™s awful folks are tripping & …
NealSJlorMaddyIylaand 12 others also answered the question NealSand 14 others also answered the question

3 days ago

BlairT

BlairTcommented onBiologic Medicines for COPD: What They Are and Why to Use Them

I also experienced life changing improvements when I started Nucala. Initially I thought I had chronic bronchitis, and the symptoms came on fast like Jeff about 6 years ago. The diagnosis I have now is 'severe eosinophilic asthma' even though I have...

3 days ago

Froglady78

Froglady78

๐Ÿ˜€Hello is anyone out there? 

3 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.