COPD360social welcomes new member Atlanticdare who joins 63,097 current members of our community. Weโ€™re glad you're here!

Coach Brandon - Community Manager

Coach Brandon - Community Manager

The U.S. Food and Drug Administration (FDA) Center for Devices and Radiological Health (CDRH is seeking adult patients that have had exposure to medical device clinical studies to participate in a virtual, non-public town hall for FDA staff on Thursday, September 4th, 2025, 11AM โ€“ 1PM EST. The goal of this town hall is for staff to understand the perspectives of patients ages 65 and older as they detail their experiences and considerations when navigating medical device clinical studies. The event will spotlight an FDA-moderated panel of patients with varying levels of engagement with medical device clinical studies within the last 5 years. Your participation will help inform the work that we do at CDRH.

Criteria for potential patient panelists:

ยท Is 65 years of age or older, AND

ยท Was enrolled and completed a medical device study within the last 5 years,

ยท Was enrolled but did not complete a medical device study within the last 5 years,

ยท Was eligible to enroll in a medical device clinical study but decided not to enroll within the last 5 years, OR

ยท Was interested in participating but was not able to enroll and/or was ineligible into a medical device study within the last 5 years

ยท Willing, able and available to participate in a virtual patient panel discussion on Thursday, September 4th, 2025 from 11AM-1PM EST.


If interested in sharing your medical device clinical study experience, please contact Anaja Pinnock-Williams at anaja.pinnock-williams@fda.hhs.gov to discuss this opportunity further.


anaja.pinnock-williams@fda.hhs.gov

2 days ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager๐ŸŒง๏ธ Extreme Flooding in Texas ๐ŸŒง๏ธ

Our hearts are with everyone in Texas affected by the catastrophic flooding and tragic loss of life.

Disasters like this are a powerful reminder of how quickly conditions can change--and why itโ€™s so important to have a plan in place, especially when living with lung disease.

If you havenโ€™t already, please take a moment to look through our Disaster Preparedness Plan, which can help you prepare for severe weather and other emergencies. You can also explore our Educational Downloads Library for more resources to support your lung health every day.

Stay safe and take good care of yourselves and those around you.


https://www.copdfoundation.org/Learn-More/Educational-Materials-Resources/Downloads.aspx#DPP

COPD Foundation Educational Materials

The COPD Foundation educational library has a variety of useful booklets, flyers, and tools that you can download to help you learn more about living and thriving with COPD โ€“ everything from the basics of lung conditions to specific topics such as exercise and exacerbations (flare-ups).

5 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainMay your Sunday be absolutely awesome, sparkling with positivity, and filled with smiling faces! ๐Ÿ˜Š

5 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainanswered the question Can anyone tell me what these results mean?

It may be best to speak with your pulmonologist first. Then, if there is something you do not understand, we will try to help you! Your pulmonologist knows your condition!
Reitzrub also answered the question Reitzrub also answered the question

16 hours ago

Teddyโ€™s Girl

Teddyโ€™s Girl asked the question: Pulse oxygen cylinder puffing too much

My home fill oxygen cylinders (pulse) more than once per breath. I donโ€™t think this is normal. I have a few tanks that only pulse once per breath and that is much more comfortable. I think there is something wrong with my tanks that pulse multiple times …

20 hours ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State CaptainI'm having a wonderful time with my daughter who is here visiting for a few days.  But - yesterday we went to breakfast and then to three stores to return a few items of clothes that I had bought.  Well, by the time it was time to meet friends for lunch, I realized my POC battery was almost out, and I hadn't thought to have a space with me.  SO - back home we went, to get another one.  Lesson learned and today, when we're going to meet my granddaughter in a restaurant about 90 minutes from here, I'll have that extra battery in the car.  


Last night we went on a bioluminescent  boat tour of the Indiana River - here are a few pictures - it was spectacular!

22 hours ago

Reitzrub

Reitzrubasked the question: Can anyone tell me what these results mean?

Can anyone tell me what these results mean? My pulmonologist has not called to discuss results with me yet. I am thinking about discussing the zephyr valve with him. I am short of breath most of the time, having to use nebulizer 5 or 6 times a day, I …

23 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainWishing everyone a very happy, easy breathing Saturday! 
Sending smiles and laughter to all of you! ๐Ÿ˜€๐Ÿ˜„๐Ÿ˜๐Ÿ˜†

1 day ago

Mike Hess, RRT (COPDF Senior Director of Advocacy & Regulatory Affairs)

Mike Hess, RRT (COPDF Senior Director of Advocacy & Regulatory Affairs)answered the question Oxy Talk

Hello! Unfortunately, we no longer record OxyTalks so that people can feel more comfortable sharing and having open conversations. However, you can certainly ask a question here to keep the conversation going, or send it to oxygen360@copdfoundation.org!
Coach Brandon - Community Manager also answered the question Coach Brandon - Community Manager also answered the question

1 day ago

jayv

jayv

Newly diagnosed with COPD. Tried 3 different medications. I had side effects from each one. Settled for Spiriva. These meds have been available for years, why are they so expensive? They are necessary meds and should have a generic by now. 

1 day ago

DebbieB.-Connecticut State Captain

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

๐Ÿฅ‘AVOCADO AND STRAWBERRY SALAD๐Ÿ“1 cup strawberries, hulled and quartered 1 avocado, slicedJuice and zest of 1 lime2 tbsp. mayonnaise 1 tbsp. olive oil4 ounces feta cheese, cut into cubes 4 ounces watercress1/2 cup canned lima beans, rinsed and...

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Fluffy Friday from baby Miyagi!
Have an awesome day, friends! ๐Ÿ˜Š

2 days ago

SharkScubaDiver

SharkScubaDiver

Just joined, hi everyone. This is quite specific and maybe controversial but I got diagnosed with moderate/severe COPD November last year. 


After 3 months of waiting I tried scuba diving again. I know itโ€™s contraindicated but Iโ€™ve been diving regularly for the last 6 months and itโ€™s really seemed to help my physical and mental health. 


I knew the risks getting back in the water, but for whatever reason, my breathing is far better (Iโ€™ve been diving for 25 years) and Iโ€™ve even got into cave diving. 


I know this is is a no-no topic, but thought Iโ€™d share my experience (not recommending for anyone else!). 


I wonder if it is a combination of not having to deal with gravity plus having a higher PPO2 (a lot of my dives would give me a higher PPO2 than 1.0 and sometimes up to 1.6. 


Itโ€™s given me a new lease of life. As an experienced diver I fully exhale and donโ€™t retain CO2 plus my ascent rates are extremely conservative. 


I just find it crazy that the single activity Iโ€™m told Iโ€™m not allowed to do is the one that has so far brought by far the best health benefits.


I wish there was more actual study information on this topic rather than hypothetical downsides (minus any real studies - for obvious reasons)


Anyone else in the same (metaphorical) boat? 


I also use an under water scooter so I never need to over exert myself. 


Best xx

2 days ago

aliingreenvalley

aliingreenvalleyasked the question: Oxy Talk

I missed the session on 7/9/25 Is there a transcript available for review?

2 days ago

Razz

Razz

Hello. Everyone,
My name is Ro and I am new to this site..  This is my first post..  I'm a 68 year old female, with end stage emphysema.  In the last month I have lost the ability to bathe myself and its very humbling..  Today I'm having trouble eating..I can only walk short distances and then I need to rest before I can go on. I just quit smoking 10 days ago and I'm hoping that I can regain at least the strength to bathe myself again..
thanks for listening...
Ro

2 days ago

Mocity

Mocity

Hello, I joined because I have advanced copd have been prescribed oxygen and often feel very anxious facing my mortality every day. I live alone and recently had to call 911 because I couldnโ€™t catch my breath and thought I might fall out. My 0xygen level was below 85%when they arrived and said I did the right thing. I thought I may be able to hear from people experiencing similar concerns with copd and how they deal with it. Thatโ€™s all for now 

2 days ago

Wildebeest

Wildebeestanswered the question Exercise and chronic bronchitis

I am very keen on exercise and also unwilling to stop, given it has huge mental health benefits for me over and above the physical. My approach will often be to push through BUT only if I am confident that I am not actually going to make things worse by …
Phyliss DiLorenzo NJ State Captain also answered the question Phyliss DiLorenzo NJ State Captain also answered the question

2 days ago

Community Announcements

Community Announcementsadded a new article COPD Foundation partners with four Minor League Baseball teams to raise awareness of COPD

COPD Foundation will share resources, information with fans at select games this summer

Miami (July 10, 2025) - The COPD Foundation is partnering with four Minor League Baseball teams to raise awareness of chronic obstructive pulmonary disease (COPD) during the 2025 season.

COPD is a chronic, progressive lung disease affecting more than 30 million Americans. Symptoms include shortness of breath, persistent cough, and fatigue. It comprises several conditions, including chronic bronchitis and emphysema, and can be caused by genetics or irritants like smoke or pollution.

"Nearly 32 million fans will attend a minor league baseball game this season. Similarly, that same number of Americans have COPD," said Jean Wright, M.D., MBA, CEO of the COPD Foundation. "That's 1 in 8 adults over 45 years old, and nearly half of those with COPD do not know they have it. Through community outreach partnerships, we're raising awareness of COPD and helping people recognize the symptoms so they can have those conversations with their health care providers to get the care they need sooner."

2 days ago

DebbieB.-Connecticut State Captain

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

๐Ÿ‰WHIPPED FETA WITH WATERMELON SALAD๐Ÿ‰One 7-ounce block feta cheese 1/2 cup nonfat plain Greek yogurt2 tbsp. half-and-half3 tbsp. olive oil, divided Salt and pepper to taste 1 English cucumber, chopped6 cups diced seedless watermelon 1/4 cup thinly...

2 days ago

baileymccrary

baileymccraryHi everyone! Deme Montgomery โ€‹โ€‹, Ohio State Captain, just published an op-ed in Dayton, OH's largest newspaper about the Supplemental Oxygen Access Reform (SOAR) Act! In her publication, she describes her diagnostic and treatment journey, the many uses for supplemental oxygen, and why it's so important to make sure that supplemental oxygen is available to everyone who needs it. Demeshia calls on Congress to put patients first and support the SOAR Act. Great work, Demeshia! Read her op-ed here: https://www.daytondailynews.com/ideas-voices/voices-supplemental-oxygen-reform-needed-for-stronger-patient-protections/UKZM4HERJBG6HADXANTHGXLAQM/

VOICES: Supplemental oxygen reform needed for stronger patient protections

Respiratory and pulmonary conditions can be complex, often misunderstood, and may even go undiagnosed for years. Having lived with the rare autoimmune disorder scleroderma since I was 19, I started experiencing breathing difficulties and a persistent cough in 2023. I even began sleeping outdoors to …

2 days ago

Dj95

Dj95asked the question: Exercise and chronic bronchitis

Hi guys Just want to say how i appreciate this group I log in every few months and it always reassures me a bit ive been on here a few years now i know i cant get 100 percent answers but can get advice and experiances. Im 30 been diagnosed as chronic …

3 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainYay! It's Thursday! Wow, am I glad, because I am lucky enough to enjoy every minute of this day! ๐Ÿ˜ƒ Let's enjoy our happiness and pass it on to others!
Have the best day ever, friends! You certainly deserve it! ๐Ÿ˜Š

3 days ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captain

If anyone is interested, Frozen Ice Cream & nondairy treats 50% off at Whole Foods through 7/15. Another way to stay cool. 

3 days ago

Deborah turner

Deborah turner

I wrote yesterday here that ive been coughing up bright red bloode off and on since yesterday, my chests been having a burning feeling in it,mild grade fever off and on.i been out of breath a little more than usual i gave myself a breathing treatment to.i went to e.r. the drs said its common to cough up bloode when your in end stage copd and sent me home.is this a true fact

3 days ago

Dj95

Dj95answered the question Results adivce

David Mannino, MD (Chief Medical Officer, COPD Foundation )Would this be a work up i did this test 4-5 months ago
David Mannino, MD (Chief Medical Officer, COPD Foundation ) also answered the question David Mannino, MD (Chief Medical Officer, COPD Foundation ) also answered the question

3 days ago

Jean IA State Captain

Jean IA State Captain

I'm doing well.....I just returned from a family reunion, first of my grandfather's family (the little reunion) and then with the descendants of 6 sons five generations back from me.  I had my daughter, Cathy, with me to help; without her, I couldn't have done any of it.  It was great to see 14 of my 17 living cousins and their children and grands and even a couple of great-grands.   Given that I am one of the younger ones of the group, 14 of us was quite a achievement.   At the big reunion, my cousins and I were the largest group.  It was really good to see everyone, but I think this is probably my last one (we only have them every five years, and at my age, five years is a long time!)  Now I am resting!  It was a truly great time and even though it took most of the energy I had, well worth going.

3 days ago

Richard DJ

Richard DJanswered the question Is anybody using either azithormycin or roflumilast for phlegm control ?

I stopped taking Azithromicine and started 250mcg of Roflumilast every other day while still taking Fisetin after each meal. I had almost NO phegm for about 2 monlths. Then I must have picked up someting and the phlegm came back with quite a bit of color …
Nana49David Mannino, MD (Chief Medical Officer, COPD Foundation )Karen Deitemeyer - Florida State Captainand 1 other also answered the question Nana49and 3 others also answered the question

3 days ago

DebbieB.-Connecticut State Captain

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

๐ŸŒฏCHICKEN CAPRESE WRAPS๐ŸŒฏ2 cups shredded cooked chicken breast1/4 cup nonfat plain Greek yogurt 1/4 cup pestoSalt and pepper to taste One 8-ounce ball fresh mozzarella 1 medium tomato1 tbsp. balsamic vinegar 4 large spinach tortilla wraps2...

3 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainOff to the beach to find the perfect shell. 
And when you find it, it will surely be swell.
A beautiful day, filled with sunshine and smiles.
Your positive outlook will spread for miles! ๐Ÿ˜€
Happy Wednesday, dear friends! ๐Ÿ˜Š
Enjoy this summertime day! โ›ฑ๏ธ ๐Ÿš 

4 days ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Has anyone found a product that is helpful in preventing the dry mouth?

One of the listed and known side effects of Spiriva (tiotropium bromide) is dry mouth. It also dried my eyes. I tried stopping it but then had exacerbations. I tried a different medication in same category of Rx (LAMA), nebulized Yupelri, but had …
danielmoranmuddleagedDebbieB.-Connecticut State Captainand 13 others also answered the question danielmoranand 15 others 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.