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Coach Brandon - Community Manager

Coach Brandon - Community Manager๐Ÿดโ€โ˜ ๏ธ Arrrgh! Itโ€™s Talk Like a Pirate Day! ๐Ÿฆœ

Have you ever been sitting in the doctorโ€™s office, listening carefully, when suddenly the conversation starts sounding a little like pirate talk?

"Your FEV1โ€ฆ exacerbationโ€ฆ hyperinflationโ€ฆ DLCOโ€ฆ arrrgh..."

You recognize a word here and there, but somewhere along the way youโ€™re thinking, Waitโ€ฆ WHAT did they just say?

Medical language can sometimes feel like its own foreign languageโ€”or today, maybe its own pirate language. ๐Ÿดโ€โ˜ ๏ธ

But hereโ€™s something worth remembering, mateys: Donโ€™t be afraid to ask your doctor to explain something again. Ask what a word means. Ask them to slow down. Ask them to put it in simpler terms. You deserve to understand whatโ€™s happening with your health and why.

Thereโ€™s no treasure chest waiting for the person who leaves the appointment pretending they understood everything.

And if you get home and think, โ€œArrrghโ€ฆI shouldโ€™ve asked about that!โ€ remember youโ€™ve got a whole crew right here on 360social, too. We may not have a pirate ship, but weโ€™ve certainly got plenty of experience to share. โค

So happy Talk Like a Pirate Day, everyone! ๐Ÿดโ€โ˜ ๏ธ

And just for today, I want to hear your best pirate talk in the comments. Ye landlubbers better not leave me sailing these waters alone! ๐Ÿฆœโš“

4 hours ago

  • NewestOldestClick to View All Comments4 comment(s)
  • LFAOMGAARRRGHโ€ฆ.COPD had me walking the plank back in 2012โ€ฆ.I didnโ€™t realize how close I was to a disastrous ending. Iโ€™d been feeling sick, could hardly walk. I didnโ€™t know why I couldnโ€™t breathe My cousin Ken was visiting and insisted I go to urgent care. He saved my life.2 hours ago
  • LFAOMGATo this day Iโ€™m still researching medical terms mostly new to me from test results. Itโ€™s amazing how many things can be wrong with you and still be alive.2 hours ago
  • DebbieB.-Connecticut State CaptainArrrrrggghhhhh, matey. Thar she blows, landlubbers!
    I'm thinking of the parrot on the pirate's shoulder! 
    ๐Ÿ˜‚ โ˜ ๏ธ  ๐Ÿดโ€โ˜ ๏ธ ๐Ÿฆœ โš“ ๐Ÿ˜‚1 hour ago
Coach Brandon - Community Manager

Coach Brandon - Community ManagerDo You Use Nebulized Maintenance Medications for COPD?

Do you haveโ€ฏmoderate to severe COPD? Have you used a nebulized maintenance medication in the past 12 months?

If you have used any of the following medications, you may able to share your experience in a virtual focus group.

-  Brovana (arformoterol tartrate)
-  Perforomist (formoterol fumarate inhalation solution)
-  Lonhala Magnair (glycopyrrolate inhalation solution)
-  Yupelri (revefenacin)

You may be paid for your time. To learn more and see if you qualify, contact Sergio Martinez atโ€ฏ866-731-2673, ext. 210โ€ฏor email copdpprn@copdfoundation.org

1 day ago

6ft Pixie

6ft Pixie

On 09/11/26, I had an appointment with my PCP because I just felt like crap. I became weaker and sweated a lot. When they took my BP at the office, it was 60/50. They sent me to the ER via ambulance. The ER could not get my BP to rise. I was also extremely dehydrated. Then I spent 4 days in the Cardiac ICU, where they could give me intravenous medication. I received 4 bags of fluids. I was then released to a med/surgical floor where they monitored my vitals.
I asked the discharge Dr. what caused this and how to prevent it from happening again. He said it was the consensus of everyone that it was my BP medication. The worst thing that happened was that they sent me home with oxygen. I have become even more depressed and livid too. I feel like a failure. People look at you differently.


I'm hoping I can get a portable oxygen concentrator so I can get back to the gym. For now, it takes all the energy I have just to walk to the kitchen and bathroom.
I hope the temps are cooling where you are! Have a great day!

9 hours ago

  • NewestOldest
  • das23Sorry you're going through all this. Hang in there and good for you trying to get back to the gym. That's a great attitude. Good luck 6ft Pixie and hope you feel better soonโœŒ5 hours ago
  • Coach Brandon - Community Manager6ft Pixie, Iโ€™m so sorry. Youโ€™ve had an awful few weeks, and that is a lot for anyone to take in. Iโ€™m really glad you made it to your doctor when you did and they were able to see what was going on and get you the care you needed. For right now, please rest and give yourself some grace. This is where things are todayโ€”it doesnโ€™t mean this is where theyโ€™ll always be. Sometimes we hit a pretty big bump in the road and just have to give ourselves time to find our footing again.

    And please donโ€™t let using oxygenโ€”or anyoneโ€™s glances at itโ€”make you feel like a failure. That oxygen is there to help you keep going. It doesnโ€™t change who you are, and it certainly doesnโ€™t make you any less of the person you were before all of this happened. Hang in there, believe in yourself, and take this one day at a time. Weโ€™re right here with you!4 hours ago
  • DebbieB.-Connecticut State CaptainSending well wishes, 6ft Pixieโ€‹!
    I know how strong you are, and you will get through this!
    We are always here if you need us! ๐Ÿค—59 minutes ago
DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainGood morning, and happy Saturday! 
Fall is right around the corner! Is everyone prepared for the change of seasons? ๐Ÿ‚

12 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captaincommented onI Was Prescribed Supplemental Oxygen. Now What?

Almost as good as having an RT, and since many never get anyone other than the delivery driver, really so helpful! Plus these resources and be viewed as often as needed!...

12 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State CaptainTropical storms so far passing near our state and likely more thru February, thanks to El Niรฑo. 

13 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captain

Check out our new Fall 2026 Digital Newsletter for the Hawaii COPD Coalition website! It has lots of great links that may be of interest to you!  Check it out! www.hawaiicopd.org/copd-newsletter-fall-2026/, https://hawaiicopd.org/copd-newsletter-fall-2026/.

19 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainTook Hazel M. out for a ride this afternoon. She loves going! A nice day down at Gulf Beach. 

20 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain๐Ÿ–ค๐Ÿ–ค๐Ÿ–คFluffy Friday Bonus!๐Ÿ–ค๐Ÿ–ค๐Ÿ–ค
This wee little girl showed up in my sister's yard. She is being bottle fed. I named her Brenda Lee. We will find her a good home after she starts eating regular kitten food. 

21 hours ago

LucindaS

LucindaSanswered the question which Supplements for Lung Health actually Work?

Many pulmonologist suggest N-acetyl cysteine (NAC). Read more about it here: Advances in the Use of N-Acetylcysteine in Chronic Respiratory Diseases It thins mucus and has health benefits for the liver.
KCSunshineRichard DJ also answered the question KCSunshineand 1 other also answered the question

23 hours ago

Caroline West Virginia State Captain

Caroline West Virginia State CaptainSmashed tomatoes.  Yum, yum, and so good in soup, creamed, in goulash, or in sauces.  I have more to do than these 7 pints, but this is labor-intensive, and I needed a break.

23 hours ago

Caroline West Virginia State Captain

Caroline West Virginia State Captainanswered the question Very low blood oxygen when walking

This is not good! Please contact your physician.
Phyliss DiLorenzo NJ State CaptainbrydyHIcopd - Hawaii State Captain also answered the question Phyliss DiLorenzo NJ State Captainand 2 others also answered the question

23 hours ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager

๐Ÿ” Happy National Cheeseburger Day! ๐Ÿ”

Now THIS is a national day I can get behind.

Sometimes youโ€™ve had a long day, youโ€™re tired, and the question of โ€œWhat the heck am I going to make for dinner?โ€ feels like one decision too many.

Enterโ€ฆthe cheeseburger. ๐Ÿ”

Is it something we need every day? Probably not. But sometimes a little comfort food just hits the spot. Itโ€™s easy, it tastes good, and somebody else doing the cooking and dishes can be a pretty darn nice bonus tooโ€”especially for patients and caregivers who already have enough on their plates.

Maybe it doesnโ€™t make our waistlines feel any lighter, but every once in a while, something simple that makes you smile can make the day feel a little lighter.

And besides, if there was ever a day to have your burger and eat it too, Iโ€™m pretty sure National Cheeseburger Day qualifies.

So letโ€™s have some fun with this one: Build me your perfect cheeseburger! ๐Ÿ” Whatโ€™s going on it? Cheese? Bacon? Mushrooms? Jalapeรฑos? Onion rings? Are you one of those brave souls putting a fried egg on there?

Or maybe burgers arenโ€™t your thing at all. Whatโ€™s your โ€œIโ€™ve had a DAY and I am NOT cookingโ€ meal?

Drop yours below. And please understand that I reserve the right to judge anyone who says a plain hamburger with nothing on it. ๐Ÿ”

1 day ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State Captaincommented onI Was Prescribed Supplemental Oxygen. Now What?

Excellent article, Mike. And part of the reason why the SOAR Act MUST be passed!!...

1 day ago

DebbieB.-Connecticut State Captain

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

Hi Karen! The soup would be a bit bland, but would be okay! It would still be enjoyable! ๐Ÿฅ„...

1 day ago

Karen Deitemeyer - Florida State Captain

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

Oh, this sounds really good, and easy!!! I'd probably leave out the garlic & scallions, but I think it would still be OK?...

1 day ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State Captainanswered the question Karen Deitemeyer

Hi Nancy2024 - I haven't been on 360 until today, so didn't see your message. I've replied now. Thank you for being concerned. I'm doing well - just a little bit tired after having the valves implanted on last Friday.

1 day ago

Community Announcements

Community Announcementsadded a new article I Was Prescribed Supplemental Oxygen. Now What?

This article was written by Michael W. Hess, MPH, RRT, RPFT.

Maybe you have just had a COPD flare that put you in the hospital. Maybe you went to one of your health care providers and told them you were short of breath, even though you are taking all your meds. Whatever the reason, you were prescribed something called "oxygen therapy."

A couple of days later, a van shows up at your door to drop off a big plastic box that has your new oxygen machine, along with a number of metal tanks, some plastic tubing, and a few "No Smoking" signs. The delivery driver probably showed you how to turn the oxygen machine on and off and gave you a number to call if an alarm went off.

1 day ago

DebbieB.-Connecticut State Captain

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

๐ŸฝBAKED SALMON๐Ÿฝ1 large salmon filetSalt and freshly ground black pepper to taste2 lemons, thinly sliced6 tbsp. butter, melted2 tbsp. honey3 cloves garlic, minced 1 tsp. dried oregano 1 tsp. minced fresh thyme Minced fresh parsley, for...

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Fluffy Friday from my sister's kitten, Bonkers Gordon! He is growing and growing! 
We wish all of you an awesome day! ๐Ÿ˜Š

1 day ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captain

1 day ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captain

Well, Iโ€™m learning more than I ever expected (or wanted to) about buying a battery + PV system so that I can have sustained electric power when we have power outages.  Our electric grid system is aging and has frequent outages but theyโ€™re getting more prolonged and with supplemental O2, thatโ€™s not a good thing.  The good part is that Iโ€™ve been able to manage with the Portable Oxygen Concentrator (Ingoen Rove6) and a Duracell 500W Power Station overnight & then go & charge it at my brotherโ€™s place during the day (he has backup battery for 1/2 his house).  Ideally, continuous flow is better for overnight, so Iโ€™m looking into what it will take to keep the 300-500 watt/hour concentrator running all night.  Sadly, that takes most of the power stations off the table and we are back to looking at a complete system that will power my home, so why not have all the power running?


Oh well, we have gotten some quotes and are now looking to get some questions answered so we can decide how to move forward.  The companies are VERY busy, so Iโ€™m hoping we still get good customer service.  A family friend was the corporate attorney for one of the firms, so Iโ€™m leaning toward using them, providing I can get the needed responses in a timely manner.

1 day ago

Puffmama

Puffmamaasked the question: Very low blood oxygen when walking

Is it normal for a patient with severe copd to have blood oxygen level drop into 60's -70s while walking?

1 day ago

Collette

Collette

Dr prescribed Esbriet. Itโ€™s over $500 a month.    Has anyone else encountered this?  Mac

1 day ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State CaptainGet your COVID shotโ€”itโ€™s circulating, as pictured in this map!

1 day ago

Phyliss DiLorenzo NJ State Captain

Phyliss DiLorenzo NJ State Captaincommented onClinical Applications of Artificial Intelligence in COPD Care

 AI has important roles to play in healthcare. But AI also carries risks. It is a dilemma that we all are facing. I believe that throttle or kill switch needs to be in place, with human monitoring. Although the need for human monitoring kind of...

1 day ago

Nancy2024

Nancy2024asked the question: Karen Deitemeyer

Can anyone tell me how Karen is doing. I sent her a message, but haven't heard back. Thanks so much

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.