COPD360social welcomes new member Ariel b. who joins 66,078 current members of our community. Weโ€™re glad you're here!

Coach Brandon - Community Manager

Coach Brandon - Community Manager

๐Ÿ’™ National Grief Awareness Day

Grief is a funny word sometimes, because it can mean so many different things.

Of course, we think about losing someone we loveโ€”a family member, a dear friend, or someone who was a big part of our lives. But grief can also come with changes in our health, losing some independence, not being able to do something the way we once did, or simply realizing life looks a little different than we thought it would.

And caregivers, you aren't left out of this one either. There can be grief in watching someone you love go through those changes, and even anticipatory grief when you know things may be changing.

But here's something I think is important:

Grief and gratitude can live in the same place. ๐Ÿ’™

You can miss the way things used to be and still be thankful for today. You can have a rough morning and laugh that afternoon. You can worry about tomorrow and still find something pretty darn good about right now.

Maybe that's part of what today can be about.

Check in with yourself. How are you doing? And take a look around at the people you care about, too. Is there someone who could use a phone call, a little extra patience, a laugh, a hug, or just somebody willing to listen?

We don't always have to have the right words. Heck, sometimes there aren't any. Just knowing someone is there can mean an awful lot.

And if you're the one carrying some grief right now, give yourself some grace. Take care of yourself and ask for help when you need it. There is absolutely no shame in that.

Most of all, celebrate the good days when they come. Notice the little victories. Hold onto the people you love. Laugh when something is funny. Make the memory. Enjoy today.

Grief may be part of our story, but it doesn't have to be the whole story. ๐Ÿ’™

And around here, you certainly don't have to walk through it by yourself.

11 hours ago

Misty Green COPDF Research

Misty Green COPDF ResearchYou can help revolutionize COPD research! Join the COPD Patient-Powered Research Network!


The COPD Patient-Powered Research Network (PPRN) is a research registry of individuals with COPD who have agreed to share their health information and the impact the disease has on their lives. The information is kept in a secure database to be used for research โ€“ ultimately leading to a deeper understanding of the disease.


Get access to the latest research studies at the COPD Foundation by joining the PPRN today!


https://login.redcapcloud.com/survey.jsp?code=k07kBNuauBXNfWRp

2 days ago

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

David Mannino, MD (Chief Medical Officer, COPD Foundation )answered the question How to keep my very long oxygen cord from getting tangled and kinked

Here are some tips that have posted over the years. https://www.copdfoundation.org/COPD360social/Commu...

15 minutes ago

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

David Mannino, MD (Chief Medical Officer, COPD Foundation )answered the question Iโ€™m in a terrible financial position now.

This certainly sounds challenging. I did not know about the three year cap on lost wages- that does not seem right.
Caroline West Virginia State CaptainKaren Deitemeyer - Florida State Captain also answered the question Caroline West Virginia State Captainand 1 other also answered the question

19 minutes ago

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

David Mannino, MD (Chief Medical Officer, COPD Foundation )answered the question CPET experiences

Hope this gives you some answers. Most important component is to be sure there is 100% effort on your part ( tests with "submaximal effort" are very hard, if not impossible, to interpret)
JazzybeanHIcopd - Hawaii State CaptainKaren Deitemeyer - Florida State Captain also answered the question Jazzybeanand 2 others also answered the question

29 minutes ago

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

David Mannino, MD (Chief Medical Officer, COPD Foundation )answered the question COPD

It's hard to say for sure without seeing actual report ( that you can post with personal info blocked out). I suspect your FEV1 (amount of air you can blow out in one second) is 22% of what it should be. Your Total lung capacity may be "normal" - but …

41 minutes ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Sunday! I am outside doing yardwork! Trimmed the horse chestnut tree branches, pulled weeds, and am planting a few things. Hope everyone is enjoying their day so far! ๐Ÿ˜Š

2 hours ago

Alfred Rodriguez

Alfred Rodriguez asked the question: COPD

I was recently diagnosed with COPD. I was told that I have 22% lung function. However I was told that I also had a normal lung capacity. What does this mean?

8 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Sunday, friends! Live in each moment; make each moment count! Life IS good; each moment is precious. Enjoy your day, everyone! ๐Ÿ˜Š

10 hours ago

Bor

Bor

On oxygen, when sleeping the oxygen gets pulled of my face. How do I keep the cannula from coming  off

23 hours ago

Bor

Bor

Fine

1 day ago

Wildebeest

Wildebeestasked the question: CPET experiences

I am finally getting a CPET and I hope this will help me get to the bottom of the exercise intolerance I have developed. HRCT, bloods and spirometry confirm I have some permanent damage from the pneumonia and my lung function has deteriorated since 2024 …

1 day ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager๐Ÿƒ Happy According to Hoyle Day! โ™ โ™ฅโ™ฃโ™ฆ

For anyone who has played cards, you may have heard somebody say, โ€œAccording to Hoyleโ€ฆโ€ when thereโ€™s a little disagreement about the rules. ๐Ÿ˜‚ Hoyle has been the go-to guide for card games for generationsโ€”and I know we have quite a few card players around 360social!

But it got me thinkingโ€ฆ

Wouldnโ€™t it be nice if COPD came with its own โ€œAccording to Hoyleโ€ rule book?

Okay, I have COPD. Turn to page 42 and tell me exactly what Iโ€™m supposed to do next. ๐Ÿ˜‚

Unfortunately, COPD doesnโ€™t always play by the rules, and patients and caregivers learn pretty quickly that there can be a LOT to figure out.

But we do have something pretty close to our own guidebook!

The COPD Foundationโ€™s Downloads Library is filled with educational materials covering the basics of COPD, managing your health, treatments, oxygen, staying active, tracking how youโ€™re doing, and much more. Our Guides for Better Living are a great place to start!

There may not be one perfect rule book for living with COPD, but having good information in your hand can sure help you play the cards youโ€™ve been dealt a little better. โค

And since it IS According to Hoyle Dayโ€”who are our card players? ๐Ÿƒ Whatโ€™s your game?


Happy According to Hoyle Day, everyone! ๐Ÿ˜Š
๐Ÿ“š Visit our Downloads Library here:
https://www.copdfoundation.org/Learn-More/Educational-Materials-Resources/Downloads.aspx

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).

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Saturday to the 360Social gang! I'm here to spread sunshine and happiness! I wish all of you a day filled with joy and smiles! 
๐ŸŒž๐Ÿ˜€๐ŸŒž๐Ÿ˜€

1 day ago

Kim H

Kim Hasked the question: Iโ€™m in a terrible financial position now.

Dear Friends, When I was 40 years old I was driving to work. I was in the left turn lane and it was safe for me to proceed. A car the way behind the car that was heading in my direction obviously had an inpatient driver behind him. So he proceeded to …

1 day ago

Kim H

Kim Hasked the question: How to keep my very long oxygen cord from getting tangled and kinked

Iโ€™m so tired of my oxygen cord I walk through my apartment with from getting tangled and kinked. Iโ€™m on an extremely tight budget, But Iโ€™m so tired of getting my head and body jerked back while walking. Any budget friendly ideas. I have asthma induced …

1 day ago

Kaseykat

Kaseykat

Hello all , my name is Julie and I have COPD Gold stage 4 class B. Iโ€™m pretty much on oxygen all the time now. In October I have a chance to travel to Maine (which is somewhere Iโ€™ve always wanted to go). I would have to fly to get there and Iโ€™m a little nervous about having COPD and flying. I know I can arrange to have help getting to my gate and stuff. Thatโ€™s not what has me concerned. Iโ€™m afraid Iโ€™ll get on the plane and not be able to breathe and freak out. Has anyone on here that has severe COPD traveling by plane and how was your experience ? 

1 day ago

  • NewestOldest
  • HIcopd - Hawaii State CaptainHi & welcome!  I have moderate to severe emphysema, diagnosed with it in 2000!  We just came back from a 1 month trip that included flight hnl to nyc, to Hel. Then we flew Norway to Tokyo and finally Tokyo back to HNL. The only way to really check how much O2 you will need for flying is a High Altitude Simulation Test, HAST. Your provider can order it. 


    There are boats, buses, trains and cars that can get you to Maine as well, which would avoid issues of high altitudeโ€”something to consider as well. 1 day ago
  • Karen Deitemeyer - Florida State CaptainHi Kaseykatโ€‹  I have very severe emphysema, and fly a few times a year - not as much as Val does,  but enough that I have a few suggestions.  Besides the HAST test, be sure that you contact the airline well before your flight as each airline has different rules and regulations about flying with a POC.  You cannot fly with liquid oxygen or with tanks.  You must have enough batteries for 150% of the total time of your flight, including any layovers.  


    You might want to do a search on this site for any previous conversations about flying.  And please feel free to ask anything else that occurs to you about it.



    1 day ago
Kaseykat

KaseykatThis is my little Oden aka Odie Bug 

1 day ago

Caroline West Virginia State Captain

Caroline West Virginia State Captain

It seems that I'm speeding through my usual side effects of Prednisone.  Today seems to be "eat everything in sight and some of what is not in sight.  I am looking forward to a sleep-back-on-schedule day.

2 days ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State Captainanswered the question Has anyone been involved in stem cell treatments? I understand there is no hard evidence.

Sean P. Smith, I'm going to ditto what Val and others have said. I had a very dear friend, desperate to find anything that would help her. She spent thousands of dollars for stem cell treatments at a clinic and all it did was to drain her bank account. …
JeanO53Patrick MooseCaroline West Virginia State Captainand 1 other also answered the question JeanO53and 3 others also answered the question

2 days ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager๐ŸŒˆ๐Ÿพ Fluffy Friday โ€” Rainbow Bridge Remembrance Day ๐Ÿพ๐ŸŒˆ

Fluffy Friday is usually about showing off the furry, feathered, four-legged, or maybe even slightly scaly little buddies who make our lives better.

Today, we're making room for some very special ones, too. โค

It's Rainbow Bridge Remembrance Day, a day to remember the pets who aren't physically beside us anymore but somehow never really leave us.

Losing them hurts. There's no getting around that. When something has loved you that completely โ€” and you've loved them right back โ€” there's going to be an empty spot when they're gone.

But today, I hope we can spend a little more time remembering the sweet instead of the sad.

The goofy things they did. The favorite toy. The tail that started going the second you walked into the room. The purrs, chirps, snuggles, wet noses and yes... those BIG smiles. And nobody will ever convince me dogs don't smile. ๐Ÿ˜Š

For so many of us living with COPD, and for caregivers and family members too, our little companions become part of how we get through the days. They don't need to understand oxygen, treatments, appointments, bad breathing days or why we're worried.

They just know you.

They know when to sit a little closer. When you need a distraction. When it's time to play. And somehow, they seem to know when you simply need a friend.

That's a pretty incredible kind of love. โค

So for this Fluffy Friday, let's celebrate all of them.

๐Ÿพ Share the little buddy curled up beside you today.

๐ŸŒˆ Or share a picture of one waiting for you at the Rainbow Bridge โ€” and tell us something that still makes you smile when you think about them.

Maybe today doesn't have to be about goodbye. Maybe it's simply about saying, "You were loved. You made my life better. And you are still remembered." โค

2 days ago

DebbieB.-Connecticut State Captain

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

๐ŸคกCHEERIOS FUN MIX๐Ÿคก3 cups original Cheerios cereal1/3 cup dried cranberries 1/3 cup golden raisins 1/2 cup cashews1/4 cup pepitas1/4 cup walnut halves1/4 cup nut butter of your choice1/4 cup honey1/4 cup unsalted butter In a large bowl,...

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Fluffy Friday from my sister's cat Jerry, who is my cat Punkie's brother. We wish all of our friends here a wonderful day! ๐Ÿ˜€

2 days ago

Jamie Jarrard (COPDF Sr. Communications Specialist)

Jamie Jarrard (COPDF Sr. Communications Specialist) created the event OxyTalk Social Hour - Wednesday, September 9, 4pm Eastern

OxyTalk Social Hour - Wednesday, September 9, 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

2 days ago

Jamie Jarrard (COPDF Sr. Communications Specialist)

Jamie Jarrard (COPDF Sr. Communications Specialist) created the event BronchandNTM360social Coffee Break - Wednesday, Sept. 9, 2:30pm Eastern

BronchandNTM360social Coffee Break - Wednesday, September 9, 2:30pm Eastern. A group for those in the bronchiectasis and NTM lung disease communities. Register here: https://copdf.co/Bronch-NTM-support

2 days ago

Jamie Jarrard (COPDF Sr. Communications Specialist)

Jamie Jarrard (COPDF Sr. Communications Specialist) created the event COPD360Social Hour & Harmonica Play-Along- Wednesday, Sept. 2, 4pm Eastern.

COPD360Social Hour & Harmonica Play-Along- Wednesday, September 2, 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 …

2 days ago

Sean P. Smith

Sean P. Smithanswered the question โ€‹Check In: Being Your Own Lung Health Champion

Really good points - I am going to make a copy so I can give it to the patients I talk with! What amazes me is people tend to be meek with their caregivers. Ladies and gentlemen ask the damn questions! Fortunately for me all my doctors and therapists are …
HIcopd - Hawaii State CaptainCaroline West Virginia State CaptainKaren Deitemeyer - Florida State Captainand 2 others also answered the question HIcopd - Hawaii State Captainand 4 others also answered the question

2 days ago

Wildebeest

Wildebeestcommented onCan COPD Be Genetic? What You Need to Know About Alpha-1

If you have North or West European family history you should especially consider testing if any of the other reasons to test as outlined in this article are satisfied. My pulmonologist was very keen to test due to my Scandinavian origins until I told...

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.