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Coach Brandon - Community Manager

Coach Brandon - Community ManagerHave you ever been told you just have โ€œsevere asthmaโ€ or โ€œCOPD,โ€ only to later discover that bronchiectasis or NTM lung disease had been overlooked? In the latest episode of our podcast, Dr. Ashwin Basavaraj, Associate Director at NYU Langone Health, unpacks how asthma, COPD, and other disorders can overlap with bronchiectasis and why these connections are often missed. Plus, what are some red flags to look out for, and when should you push for additional testing?   Listen here: 
https://www.bronchiectasisandntminitiative.org/Learn-More/Educational-Materials-Resources/Podcasts

Podcasts | Bronchiectasis and NTM Association Podcast

Bronchiectasis and NTM 360 Podcast is a series that educates, guides, and empowers patients and their family members with current information and resources. Hear from leading health experts, passionate advocates, caregivers, and people living with bronchiectasis and NTM lung disease.

18 minutes ago

Coach Brandon - Community Manager

Coach Brandon - Community ManagerPrescription costs can be one of the most stressful parts of managing careโ€ฆ and for those using Medicareโ€™s Extra Help (LIS), the experience can look very different.

For some, it means real reliefโ€”lower copays, reduced costs, or even no deductible at all.

Weโ€™d really love to hear from you ๐Ÿ‘‡

๐Ÿ’ฌ If youโ€™re part of Medicareโ€™s Extra Help (LIS) program, how has it impacted what you pay for your prescriptions?

Whether youโ€™ve been using the program for a while, just recently learned about it, or this is the first time youโ€™re hearing of itโ€”your perspective matters.

Your experience could help someone else better understand what to expectโ€ฆ and maybe even point them toward support they didnโ€™t know was out there. ๐Ÿ’™

๐Ÿ‘‰ 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?

23 hours ago

Dinna25

Dinna25answered the question A different kind of quit smoking question...

Hi all Its been many many years but i will not have smoked 34,680 fags. Combination of Tailor made and Rolling Tobacco. Eventually packed up on medical grounds years ago but still diagnosed with copd some years later.
Caroline West Virginia State CaptainStephanie Williams, RRT (COPDF VP of Education and Engagement)Michael55and 7 others also answered the question Caroline West Virginia State Captainand 9 others also answered the question

43 minutes ago

DebbieB.-Connecticut State Captain

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

โบ๏ธCREAM CHEESE RANCH ROLY-POLYSโบ๏ธ16 ounces cream cheese, softened One 1-ounce packet dry ranch dressing mix1/2 cup finely diced red bell pepper 1/2 cup finely diced scallionsOne 2.25-ounce can chopped black olives, drainedFour 12-inch flour...

50 minutes ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Tuesday! 
Keep those positive vibes flowing! You have no idea how much your positive outlook helps others! 
Positivity. Pass it along to everyone! ๐Ÿคฉ

5 hours ago

Ms Burns

Ms Burns

I'm seeing the pulmonologist for the first time in May 2026 and don't know what to expect 

12 hours ago

Ms Burns

Ms Burns

Feeling lonely but ok 

12 hours ago

DavinaT

DavinaT

๐Ÿ˜Š

15 hours ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State CaptainCaroline West Virginia State Captainโ€‹ writes wonderful articles and this one is, I think, one of the best, especially since I also have a drippy nose and found her suggestions to be ex cellent!!  Thank you, Caroline!!

https://www.bezzycopd.com/discover/basics-copd/health-managing-allergies-on-oxygen-for-copd/?utm_term=reads&slot_pos=1&utm_source=Iterable&utm_medium=email&utm_campaign=%20copd_17669449&utm_content=thisweek

Allergies and Oxygen: What to Know

Using oxygen for COPD can be challenging when you're not sneezing. Pollen season can make it worse. Here are ways to help yourself.

17 hours ago

Lisa Hall- Minnesota State Captain

Lisa Hall- Minnesota State Captainanswered the question Are you part of Medicareโ€™s Extra Help or Low-Income Subsidy (LIS) program?

I get extra help through the state of Minnesota I to pay $3 and some change and $6 and some change. They also pay for my Medicare premiums And it is also income based so it tends to keep you poor instead of helping you get a leg up if you have a chronic …
Calebsnana also answered the question Calebsnana also answered the question

18 hours ago

Dan Leonard

Dan Leonardcommented onTom the Truck Driver Drives COPD Awareness

Thank you Tom!I am a voice for those who like me have COPD. My #1 most important goal is to get word out to as many fellow patients as possible. So much is not being openly told to patients forcing many to do research on their own. I took immediate...

19 hours ago

Ms.PoohBear3040

Ms.PoohBear3040

I have upper resportary and been dealing with it for some yrs now. I am concerned due to my dad passing away to lung cancer when I was 14yrs old. So I am doing everything I can do

19 hours ago

Bob puff dragon

Bob puff dragonAnother wet dreary day on the coast like we need it.
Trying to get through another day bird watching and observing the world from the front window,no plans except have a video conference with local school board to try and establish an expanded music course,Have been offering guitar classes for years where  l tape them and experiment at the mixing board to show them a
Better view of the behind the scenes business aspects.The students have been asking for me to do more as nothing is offered in our area to help them and Lord knows l need a cause these days.Afraid dealing with school boards is like copd, frustrating and endless.
Anyway keep them breaths large and repeat.

23 hours ago

DebbieB.-Connecticut State Captain

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

โšก๏ธEDAMAME ZIPPY CRUNCH SALADโšก๏ธSALAD:One 12-ounce package frozen shelled edamame, cooked and cooled2 cups packaged coleslaw mix2 cups shredded red cabbage1 large red bell pepper, diced1 cup shredded carrots3 scallions, chopped 1/3 cup chopped...

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainToday is Monday. Time to turn over a new leaf! ๐Ÿƒ Start the week with a positive outlook. Plan your days according to the weather forecast. Spend time outdoors on sunny days. Accomplish projects indoors on rainy days. Balance out your week so you can get things done, plus have time to relax. Leave the negativity behind, friends! From here on in, we are moving forward! โžก

1 day ago

Phyliss DiLorenzo NJ State Captain

Phyliss DiLorenzo NJ State Captainanswered the question Ohtuvayre residue in Neb cup.

I have not had this issue. I use the Pari only with Ohtuvayre, as I was instructed by the pharmacyโ€™s pharmacy counselor and or nurse, I donโ€™t believe the Pari I received from my specialty pharmacy is a LC Sirint, I am currently away from my Pari, in a …
David Mannino, MD (Chief Medical Officer, COPD Foundation ) also answered the question David Mannino, MD (Chief Medical Officer, COPD Foundation ) also answered the question

1 day ago

ZaydeBob

ZaydeBob

I was diagnosed with COPD paraseptal emphysema in 2023. Outside of exacerbations, I was stable and showed no signs of progression until 10 months ago. My shortness of breath and energy levels have been slowly getting worse. Walking to the mailbox and back (about 110 yards roundtrip) now leaves me breathless and exhausted. Two months ago, I learned that I have diastolic dysfunction. Fortunately, it is Stage I.

I have also had very high Rheumatoid Arthritis (RA) factor levels that have been increasing in the past year. The normal range for RA is 0 - 20. My RA factor is 850. My Pulmonologist sent me to see a Rheumatologist on Monday. She ran a bunch of blood tests. She told me that I now have Rheumatoid Arthritis in my lungs. This is classified as Interstitial Lung Disease (RA-ILD). I go back to see her next week to discuss treatment options. I was shocked when I did a look up on RA-ILD and saw that the median survival from diagnosis is 3-5 years. I'm nervously awaiting my follow up visit with her.

Is there anyone else here that has both COPD and ILD?

1 day ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Caroline West Virginia State CaptainI do not have both conditions, I hope that someone with knowledge will respond.  Welcome to the group and I wish you all the best.1 day ago
  • Bob puff dragonHi Bob,,
     l also have exactly what you have and also share the same name totally medically irrelevant..
    My ra count at 800-900 has remained consistent over time.Been on weekly methotrexate injections for over ten years as well,Prednisone burst treatments,but little good is coming from it.
    I get these chest pains that feel like l have been kicked by a giraffe and also the extreme shortness of breath on exertion as you have.
    I do believe our cases are fairly rare however as I have raised that question in here before to basically  silence.
    I am afraid I have no great revaluation for you to help you,a rheumatologist was not really the be all to anything in my case.Pills more pills,, more tests about all.
    Most health care workers look at you with dear in the headlight look when you mention it,like you are inventing a new disease l have found,very frustrating for sure.
    Do you also have co2 retention issues as well ,would be nice to know?Last arterial test came back at 82 for me,about triple recommend average.Get yourself tested for this if you haven't already maybe would a suggestion.
    My o2 levels are also usually high above 90 most days,are yours? Many health care and ambulance attendants give you a puzzled look as to why you are so sob when 02 stats so high.
    Anyhow l digress and know exactly the struggles you live with daily ,sucks to be us.Hope you find some help that works for you and please stay in touch so maybe w can help each other.......23 hours ago
  • Caroline West Virginia State CaptainTo both Bobs, I am very sorry that we were unable to help.22 hours ago
GAnne

GAnneanswered the question Is any else dealing with the pollen, are you wearing a mask?

!!I have plenty of allergy meds. For rag weed all winter. I normally have a good spring, guess I think about it because my dr told me to be careful in the pollen. Iโ€™m glad he is go. Er Ed about me and I see him Wednesday for another didnโ€™t shot and go …
Caroline West Virginia State CaptainKaren Deitemeyer - Florida State Captaindas23 also answered the question Caroline West Virginia State Captainand 2 others also answered the question

1 day ago

Coach Brandon - Community Manager

Coach Brandon - Community ManagerJean Rommes Memorial - live stream her celebration of her incredible life โ™ฅ



https://www.youtube.com/watch?v=ghiIoOUsN6k

1 day ago

Coach Brandon - Community Manager

Coach Brandon - Community ManagerAsk me how Jasmine and Jagger always stay calm and never take off after a rabbitโ€ฆ and definitely never take me for a ride while Iโ€™m holding both leashesโ€ฆ yikes! ๐Ÿพ


Wishing you a lovely afternoon, with some Spring colors mixed in!

1 day ago

norin

norin

Not brilliant 

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappiest of Sundays to everyone here on 360Social! May every moment bring you much deserved joy! ๐Ÿ˜Š

2 days ago

ZaydeBob

ZaydeBobanswered the question Check-In: Commonly Asked Questions About Pulmonary Rehab

I just completed my second pulmonary rehab program last week. The exercises and camaraderie were very helpful. My first time was 2 years ago. I highly recommend it to anyone with COPD, emphysema, bronchiectasis, or any other lung disease or disorder.
Caroline West Virginia State Captain also answered the question Caroline West Virginia State Captain also answered the question

2 days ago

ktm390

ktm390

I can really identify not being able.to sleep since i was diagnosed with emphysema had really bad nightmares but thanks to the positive posts about living with it and controlling what i can control helps sometimes though i quit smoking 16 years ago thought i probably i would not get lung cancer or emphysema guess i was wrong but that can't be changed now live day by day be grateful for today and try to be happy live my best life good luck

2 days ago

GAnne

GAnneasked the question: Is any else dealing with the pollen, are you wearing a mask?

I feel like I have been in all winter, and now that spring is here the pollen is high. What kind of k are you wearing, I just want to go out and sit in this beautiful sunlight, and not see it from just the inside. Itโ€™s hard to breathe with a mask on, but …

2 days ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State CaptainFor those of us who knew her, Jean IA State Captainโ€‹'s Celebration of Life will be live streamed tomorrow (Sunday the 12th) at 2 PM Eastern.   Or even if you didn't know her - she was a COPD Foundation Board member, a wonderful friend  and a fierce advocate for both the Foundation and the American Lung Association.  

https://www.youtube.com/live/0Hd2xuDAbGY

Memorial for Jean Rommes

Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.

2 days ago

Mr.CL

Mr.CLasked the question: Ohtuvayre residue in Neb cup.

I use two different Nebulizer cups for Ohtuvayre. One, the Aeroeclipse XL and the other, the Parí LC Sprint. I donโ€™t notice anything unusual with the Aero, but the Sprint ends up with a gelatinous residue on the inside and outside of the insert. Is this …

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.