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Coach Brandon - Community Manager

Coach Brandon - Community ManagerWe would love to get your feedback on a topic that we have for the week, please join in and offer your answers!


https://www.copdfoundation.org/COPD360social/Community/Questions-and-Answers/Are-you-part-of-Medicares-Extra-Help-or-Low-Income-Subsidy-LIS-program.aspx

Are you part of Medicareโ€™s Extra Help or Low-Income Subsidy (LIS) program?

If you are part of Medicareโ€™s Extra Help or Low-Income Subsidy (LIS) program, how does that impact what you pay for your prescriptions?

4 days ago

BomBy

BomBy

Hey all. I am just laying here with anxiety and overthinking. My pulmonary test is not scheduled until March 18th, and I seriously feel like everything is going in slow motion. I was functioning completely normally before I had someone come to clean vents in my home on January 13th, and the guy blew the dust back into our house REALLY bad. I spent weeks cleaning and had to have them redone. Hired someone else to sanitize the basement floors and he proceeded to run his van outside in subzero temps with our door open, and I inhaled those fumes for several hours asking politely (Iโ€™m too nice sometimes) to please move it or turn it off. Our air purifiers were bright red for hours following this event. Long story short, I have not been the same since. It literally took me out and I am panicking about the fact that the radiologist stated emphysema air trapping on my x-ray, I have shortness of breath doing normal things now that I never did before. Out of no where. I think back to January 13th when this happened and how I was literally fine before this all happened. Iโ€™ve read emphysema is like the worst of COPD, and being only 47 with my girls I am so scared. Not sure about this pulmonologist and if I should try to get into someone else to let them know about all of this while I patiently wait for testing? My anxiety is not helping matters and I just donโ€™t know where to turn to. Any advice? Trying to slowly exercise and keep eating but have been struggling with weight anyway and just feel like maybe I should do something more. I donโ€™t even know exactly what I am asking just so lost and scared and feel like this put me over the edge out of nowhere when I was honestly fine before. Thanks for listening to my rant. Ugh!

6 minutes ago

Caroline West Virginia State Captain

Caroline West Virginia State Captainanswered the question Pulmonary rehab

Rants are ok. I still think that you need to contact your pulmonologist about this issue.

3 hours ago

Caroline West Virginia State Captain

Caroline West Virginia State Captainanswered the question Supplemental oxygen

Your pulmonologist must see that your oxygen drops to 88 or below before they can prescribe oxygen. Have you contacted the office to let them know that your numbers are dropping?

3 hours ago

Kmcnamara68

Kmcnamara68asked the question: Supplemental oxygen

So when did everyone's pulmonologist decide it was time for supplemental oxygen? Since October my o2 level drops very easily and sometimes simply while at rest. It went down to 88 tonight making tacos and that low sitting on the couch at times. This is …

4 hours ago

Kmcnamara68

Kmcnamara68asked the question: Pulmonary rehab

Aren't pulmonologists supposed to be pro exercise? And yet I've never had a one of them provide any guidance. I was exercising vigorously up until flare last October. But in a fairly short amount of time I got almost all the way back to where I was. But …

8 hours ago

BrandyLynn

BrandyLynnMy chest percussion cup came in the mail. Does anyone use one of these? I am curious to see if it helps break up mucus. 

8 hours ago

Jamie Jarrard

Jamie Jarrard created the event OxyTalk Social Hour - Wednesday, March 11, 4pm Eastern

OxyTalk Social Hour - Wednesday, March 11, 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

9 hours ago

Jamie Jarrard

Jamie Jarrard created the event BronchandNTM360social Coffee Break - Wednesday, March 11, 2:30pm Eastern

BronchandNTM360social Coffee Break - Wednesday, March 11, 2:30pm Eastern. A group for those in the bronchiectasis and NTM lung disease communities. Register here: https://copdf.co/Bronch-NTM-support

9 hours ago

Jamie Jarrard

Jamie Jarrard created the event COPD360Social Hour & Harmonica Play-Along- Wednesday, March 4, 4pm Eastern.

COPD360Social Hour & Harmonica Play-Along- Wednesday, March 4, 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 to …

9 hours ago

Jazzybean

Jazzybeananswered the question Pulmonologist advice?

ktm390 I just want to add my thought since I am somewhat in the same place as you. I also continue to hear positive comments about the severity of my COPD while I continue to feel worth and have less and less exercise ability. If I were you I would …
ktm390 David Mannino, MD (Chief Medical Officer, COPD Foundation )Kmcnamara68and 1 other also answered the question ktm390 and 3 others also answered the question

13 hours ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager

๐Ÿšจ Fluffy Friday + February Wrap-Up ๐Ÿšจ

Okayโ€ฆ quick question.

Who gave February permission to pack up and leave already?!
I blinked and suddenly weโ€™re at the last week. ๐Ÿ˜„๐Ÿ“†

If you ask my dogs, February was clearly 47 days long (because winter naps are serious business)โ€ฆ but somehow for the rest of us, it flew.

So letโ€™s close it out the best way we know how:

๐Ÿพ Drop your fluffy (and feathered!) Friday photos
๐Ÿพ Share your pets, grand-pets, neighbor pets, or honorary stuffed animals or the squirrel in the backyard
๐Ÿพ Bonus points for dramatic side-eye or if they look like theyโ€™re judging you. ๐Ÿ˜„


And while weโ€™re at itโ€ฆ

๐Ÿ’™ Whatโ€™s one small win you had this month?
๐Ÿ’™ What did you push through?
๐Ÿ’™ What helped your breathing or your mindset?

Maybe you made it to pulmonary rehab.
Maybe you rested when your body said rest.
Maybe you just kept going.

That counts.

As we roll into March, letโ€™s fill the feed with paws, smiles, and reminders that even short months hold big strength.

Jasmine & Jagger have already approved this message. Theyโ€™re currently supervising from the couch. ๐Ÿถ๐Ÿ˜„

Nowโ€ฆ show me the fluffy!

13 hours ago

DebbieB.-Connecticut State Captain

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

~~Friday night is date night! Try our Best Date Bars, and you can make any night date night! ๐Ÿ˜‰ โœด๏ธBEST DATE BARSโœด๏ธ2 1/2 cups putted dates, cut up1/4 cup sugar1 1/2 cups water1/3 cup coarsely chopped walnuts 1 1/4 cups flour1/2 tsp....

14 hours ago

ktm390

ktm390 answered the question CT diagnosis of emphysema but very mild symptoms

Hi im very similar to you i have mild emphysema diagnosed 4 years ago just had another ct scan still mild breath machine is good i walk alot have a slight cough and a little mucus in throat i was very frightened now doctor says don't think to much live …
DebbieB.-Connecticut State Captain also answered the question DebbieB.-Connecticut State Captain also answered the question

16 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Fluffy Friday from two of my sister's kitties, Jerry and Johnny Rocket! We all wish you a pleasant, easy breathing day! ๐Ÿ˜€

19 hours ago

NjB

NjBanswered the question Check-in: Managing airway mucus: Commonly asked questions

People need to try NAC. N-Acetyl-Cysteine. Reduces mucus. Also Xlear nasal rinses. Helps too.
Tammy55Jenga1Dr H and 2 others also answered the question Tammy55and 4 others also answered the question

23 hours ago

BrandyLynn

BrandyLynn

I am trying to understand what makes some days better than others. Paying close attention to what I am doing each day. What I eat, drink, my activity level, etc... Today was a pretty good day breathing-wise. The two days prior I was winded and had far more mucus production. I don't know what changed? Just learning. Maybe I should be keeping a journal of some kind? These days are such a relief, when I can be doing something and not even think about my breathing. Feels amazing to feel normal, and I am blessed that that still happens for me. Will I ever again have a day when it escapes my mind that I have COPD? Full disclosure, I also have severe OCD and know that this is NOT helping! I hope you're all breathing well today! 

1 day ago

Kmcnamara68

Kmcnamara68answered the question Bronchiolits

had hrct scan for this today. Guess we'll see
Caroline West Virginia State Captain also answered the question Caroline West Virginia State Captain also answered the question

1 day ago

Transparent9

Transparent9answered the question Has Anyone Used Aspirin To Slow Progression or Reduce Symptoms?

My research suggested aspirin and Vitamin B3 (nicotinamide riboside) might be useful in slowing down loss due to emphysema. Both might reduce lung inflammation. Care should be taken with aspirin. Vitamin B3 is relatively safe.
David Mannino, MD (Chief Medical Officer, COPD Foundation )JD85Natalie Nelsonand 2 others also answered the question David Mannino, MD (Chief Medical Officer, COPD Foundation )and 4 others also answered the question

1 day ago

Transparent9

Transparent9asked the question: CT diagnosis of emphysema but very mild symptoms

I was diagnosed with smoking related emphysema about 14 months ago via a lung health CT scan on the NHS. I have not really got any symptoms. Maybe a bit more phlegm in the mornings. I'm 61 and gave up smoking on dianosis. I can run 10 km relatively …

1 day ago

Transparent9

Transparent9

I was diagnosed with emphysema about 14 months ago. I have not really got any symptoms. Maybe a bit more phlegm in the mornings. I'm 61 and gave up smoking on dianosis. I can run 10 km relatively easily. Not short of breath.
Initially, I was very frightened but now I'm not so. In fact I have come to terms with what I have. I lnow I'm lucky.
My fear is, will this suddenly get worse or will there be a slow but manageable decline in lung function?

1 day ago

DebbieB.-Connecticut State Captain

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

๐ŸฏHONEY NUT SMOOTHIE๐Ÿฅœ1/3 cup rolled oats1 tbsp. nut butter of your choice1 tbsp. honey1/4 cup plain Greek yogurt 1/2 cup unsweetened almond milk 4 frozen almond milk cubesPlace all ingredients in a blender. Blend until smooth. Serves 1 ๐Ÿ˜‹...

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Thursday, friends! Enjoy a nice, warm -n- cozy day! Ol' Man Winter can't get us down! We are dreaming of Spring! ๐Ÿ˜€

1 day ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captaincommented onHow to Care for Your Caregiver

So many of us are caregivers and many of us also receive some caregiving. Itโ€™s important to be happy in whichever role one finds him/herself. Also be sure to ask for help as needed and take breaks and time for oneself. Caregiving is tiring and a...

1 day ago

nesnyds

nesnydsHappy Pink Shirt Day (where I live anyways)

2 days ago

Calebsnana

Calebsnanaanswered the question Are you part of Medicareโ€™s Extra Help or Low-Income Subsidy (LIS) program?

I have the qmb program through health and human services which automatically makes you eligible for extra help on Medicare. I chose United health dual. The most I pay for an Rx is 12.65 and that's only a few. I didn't pay anything last year but …

2 days ago

Eugena

Eugenacommented onHow to Care for Your Caregiver

Be kind to those helping us. After all, where would we be without them....

2 days ago

yeaheaitsme

yeaheaitsme

can anyone help me out? i was diagnosed with COPD in my left lung at 18 months, every spirometer test iโ€™ve done has confirmed it, last year during summer, i had another spirometer test, the nurse was vile, she locked me in the room with her, forced my to take a test without letting me catch my breath as i was gasping for air and wheezing, i asked if i could just sit down for atleast half an hour as i was on the verge of fainting it felt like, i was screamed at, so i took it, it came back the same as any other time but this time? she claimed it was fine, that i actually never had COPD in the first place, (i have the evidence and the me being clinically dead nearly having my ribs cracked open due to it ect even leading upto recent years all the times ive been in hospital) i just said okay, as you do, i was then told id stolen 31 blue asthma pumps from the doctors! i canโ€™t take the blue one as it stops my breathing, causing me to gasp for air. she then claimed i was highly abusive, that i had apparently smashed the office up, (i was locked in sat down, i left immediately as soon as she unlocked the door and cried running out) also claimed i wasnโ€™t struggling to breathe and was okay, i have a witness to all of this, i tried to report her for false accusations and locking me inside the room but was sent a disgusting letter by the main manager, i would like to add the SAME nurse had done this to another member of my community who suffered from copd too. what do i do? can anyone give me advice if its okay? 

2 days ago

Community Announcements

Community Announcementsadded a new article Looking Beyond the Lungs: Why Screening for Comorbidities Matters

This post was written by Arnelle Konde, MPH, CHES.

It is no secret that COPD rarely occurs alone. People living with COPD often face other comorbidities such as heart disease or diabetes, which can affect their symptoms and increase mortality risk.1-2 Although comorbid conditions are common, many go undiagnosed or are identified too late.1 This can lead to treatment challenges and poor coordination between providers. To improve outcomes, health care providers should incorporate routine screening for these conditions into standard COPD care.

2 days ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager๐ŸŒ Itโ€™s that time again โ€” VMCotWW! ๐ŸŒ

This will be our last one for February, and wowโ€ฆ this month has brought some wild weather on top of already busy days. โ„๐ŸŒฌ๏ธ

Today, letโ€™s keep it light and fun. Share something that makes you happy โ€” even if itโ€™s a snow update, a cozy moment, or a small bright spot in your day.

Post a photo, tell us whatโ€™s going on in your corner of the world, and letโ€™s have a lot of fun together today! ๐Ÿ˜Š๐Ÿ’™

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.