COPD360social welcomes new member COPD705 who joins 65,965 current members of our community. Weโ€™re glad you're here!

Coach Brandon - Community Manager

Coach Brandon - Community Manager

๐ŸŒŽ๐Ÿ“ธ Visit My Corner of the World Wednesday โ€” with a soundtrack! ๐ŸŽถ

Well, today is apparently National Vinyl Record Day AND Middle Child Day. And since itโ€™s also Visit My Corner of the World Wednesday, weโ€™re going to do what any reasonable community would doโ€ฆ

Mash all three together and see what happens. ๐Ÿ˜‚

๐ŸŽต If your corner of the world had a soundtrack, what would be playing?

Maybe itโ€™s a favorite song that takes you back years. Maybe thereโ€™s a song that reminds you of home, a favorite vacation, your hometown, or simply sitting outside on a beautiful afternoon.

Music has a funny way of taking us places without ever leaving the room โ€” and on days when COPD, bronchiectasis, NTM, the weather, or just life makes getting out a little harder, sometimes those memories can be pretty wonderful places to visit.

So today, show us your corner of the world! ๐Ÿ“ธ

It can be your backyard, the view from your window, somewhere you visited years ago, an old family photo, or someplace that simply makes you smile.

Then tell us:

๐ŸŽถ What song would you play with that picture?

Bonus points if you still own it on vinyl. ๐Ÿ˜Ž๐Ÿ’ฟ

And to all the middle children out there โ€” don't worry. We didn't forget you.

Wellโ€ฆ not completely. ๐Ÿ˜‚

Happy Visit My Corner of the World Wednesday! ๐ŸŒŽโค

13 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captaincommented onBiologics for COPD: What You Need to Know

Biologics can indeed make a huge improvement for the correctly chosen patients. From 2000 until covid, I had 1-6 exacerbations/year. Since starting biologics, no exacerbations in nearly 2 years! I am thrilled research continues for biologics which...

2 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question โ€‹Check In: Being Your Own Lung Health Champion

Yes, I like making a copy of my questions, with most important being on top and handing a copy of the list to the provider or staff person taking my vitals. This way the provider & I are on the same page and make sure to address the Qs. If I have a …
Caroline West Virginia State CaptainKaren Deitemeyer - Florida State Captaindas23and 1 other also answered the question Caroline West Virginia State Captainand 3 others also answered the question

7 hours ago

Community Announcements

Community Announcementsadded a new article Biologics for COPD: What You Need to Know

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

Managing COPD is not always easy. Sometimes it can seem like your COPD treatments are not working. If you are still dealing with symptoms or frequent flare-ups, you may have heard about a newer type of treatment called a biologic. Here we will break down what biologics are, how they work, and what you should know before talking to your doctor. We also want to hear from youโ€”what have you heard about these treatments, and how can we help you learn more?

What are Biologic Treatments?

Biologic medications are different from the medicines you take for COPD. Most pills and inhalers are made in a lab with chemicals. Biologics are made from natural sources, like living cells or proteins.1 While many medications affect your entire body, biologics work on one specific part of your immune system. This targeted approach may help reduce inflammation in a more effective way.1

9 hours ago

Eddie65

Eddie65

Will it been  sometime now, but i doing ok but my c opd has enter into stage 4 now. I'm  hanging in there and on 6l/m now 24/7

11 hours ago

DebbieB.-Connecticut State Captain

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

๐ŸŒ๐Ÿ“๐ŸFRUITY PARFAIT๐ŸŒ๐Ÿ“๐Ÿ1 large banana, sliced1/2 cup sliced fresh strawberries 1/2 cup diced fresh pineapple 2 cups nonfat vanilla yogurt1/2 cup granola of your choice 4 fresh hulled strawberries for garnish Place the banana, strawberries,...

13 hours ago

Strab

Strab

๐Ÿ˜’ Please allow me to introduce myself, I'm a man of wealth and fame...not really, i syole that line. I'm just a guy who has finally accept the fact that COPD is now a part of my life. It has taken me a while to deal with the fact that things have changed. I was just discharged again for exacerbation. It has hard to healthy people about this demon, they just don't get it. I am looking for a place talk about this with people who will understand.
Simple household tasks have become major undertakings, family get togethers have become frustrating. The inability to play with grand kids is heartbreaking to me. I am looking for support for the times i dwell upon these issues.

17 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy wonderful Wednesday, everyone! Wishing all of our members a pleasant, easy breathing day! ๐Ÿ˜Š

18 hours ago

GAnne

GAnneanswered the question Exacerbations once a month? Looking for advice (long)

These are all great ideas, I would consider the 6 minute walk test to determine if oxygen is needed, also have your esoinophils tested to see how high they are, you may could use dupixent, or nucala
squeekJane M. MartinHIcopd - Hawaii State Captainand 4 others also answered the question squeekand 6 others also answered the question

22 hours ago

thehlk

thehlk

Hi, everyone.  Just me, Heather, hiding in the bathroom, trying to stifle another round of tears. Iโ€™m still waiting to see the pulmonologist after finding mild emphysema on my ct scan last year. Of course, Dr. didnโ€™t mention it, I noticed myself in my patient portal. I know when I have the pft I will have COPD. I suspected last summer before I even had the scan. Then I had a terrible time over the winter - three respiratory infections. The last one was scary. I was getting winded walking across the hall at work. That has never happened to me before. And since quitting smoking my lungs have felt even worse! I have never been so scared in my entire life. I know many will say COPD is treatable, and some people live many years. Iโ€™m 51, and all I can think about is dying of respiratory failure in front of my family. I mean - the vision is in my mind a majority of the day.  And when will I need oxygen? And when will I have breathlessness at rest? And when wonโ€™t I be able to go up stairs? I started antidepressants, but they donโ€™t stand a chance against what my mind is doing. Every day for 3 months. And I work at an elementary school face to face with littles all day. I get sick several times per year, but I canโ€™t do another winter like this past one. It took a long time to get back to breathing like normal after that last one. Iโ€™ve done so much reading and I have yet to see anyone saying they quit smoking and their COPD has not gotten worse - which is what I always heard - quit and it wonโ€™t get worse! Well, I have learned that was a lie!!!! How does everyone cope?!? My husband wishes I never had that scan because he can hardly bear to see me like this. 

1 day ago

  • NewestOldest
  • DebbieB.-Connecticut State CaptainHello.
    It sounds like you are dealing with alot of anxiety, which will not help your breathing!
    I have seen people post here in the past, saying they feel a bit worse for a while after quitting smoking. The "gunk" needs time to leave your system, so to speak.
    You don't know if you have COPD until youโ€™ve had a pulmonary function test. A CT scan is not a positive diagnosis. 
    And, yes. There are many people here who ARE living well in all stages of COPD, myself included. We are not thinking about dying. We live our lives.
    Keeping positive thoughts in your mind is imperative. Feeling grateful for all the good things in life is important!
    Keep calm. Stay strong. Carry on! 
    Worrying doesn't make what you're worried about go away.
    I have several health conditions. I am happy every single day. Grateful to be here. I hope you can feel happiness! You deserve it! ๐Ÿ˜€1 day ago
  • Karen Deitemeyer - Florida State CaptainWelcome thehlkโ€‹  I'm glad that you found us.  I was 55 when I was officially diagnosed and am 80 now.  So, yes, people can and do live many years with COPD.  And it can be a very good life, depending on whether you exercise, watch your weight, take any meds that are prescribed, get all the vaccines reommended for you, and do your best to stay well.  With your job, I realize that's going to be more difficult for you than for others who do not work around little ones.  If they turn out to be the cause of your having frequent respiratory infections, you may need to think about a different type of work.  


    Please let us know what your pft test shows, and do your best not to panic.1 day ago
  • brydyHi Heather. I can tell from your words you are really scared & your brain is locking you into fear & worst case scenarios. im so sorry you are going through that & glad you posted. I know how hard that can be to reach out when feeling so anxious & upset. If I can offer you 1 comfort its that ctscans can show mild lung changes in ex & current smokers & even as ppl age but do not necessarily mean copd. only a pft can really determine your lung health & it sounds like you will be seeing a pulmonolgist soon so thats rly good! try not to think too far ahead rn, stay in the present & get that test done, knowledge is power. our brains can send us to rly dark places when we are in the not knowing place. you have done the absolute best thing for your lungs & your health in quitting smoking! thats a huge accomplishment you should be super proud of! sometimes ppl do feel worse for months after quitting while your body recovers but keep strong. it is the single best thing you can do for yourself & your family. hang in there, you have a whole community of ppl here thinking of you & wishing the absolute best for you. you've got this. and when/if u feel like u dont, post away & we will offer our care & support. I promise you will get thru this. sending u warmest hugs. 22 hours ago
Coach Brandon - Community Manager

Coach Brandon - Community ManagerWhen Your Breathing Says, โ€œSomethingโ€™s Not Quite Rightโ€ฆโ€

We often talk about COPD exacerbations during cold and flu season, but unfortunately, they don't check the calendar. They can happen in the middle of summer too.

Sometimes the first signs can be pretty subtle. Maybe you're a little more short of breath than usual, your chest feels tighter, you're coughing or wheezing more, your mucus has changed, or everyday activities suddenly feel harder. Sometimes it's simply that feeling of, โ€œSomething is off today.โ€

That's why knowing your normal is so important. When something starts changing, paying attention early and communicating with your healthcare team can make a real difference.

And as Karen reminded us, this is where a COPD Action Plan can be such a great tool. It's a roadmap you create with your healthcare provider that helps you recognize changes in your symptoms, know what steps to take, and understand when it's time to call for help.

Summer brings its own challengesโ€”heat, humidity, poor air quality, smoke, allergens, travel, and plenty moreโ€”so keep listening to what your body is telling you.

What are some of the first signs that tell YOU your COPD may be starting to act up? Sharing what you've learned might help someone else recognize their own warning signs a little sooner! ๐Ÿ’™

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

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

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State CaptainI'm starting an exacerbation. When I was at my PCP's yesterday, I mentioned that my chest was tight, and I had a slight cough. She listened and told me to start on my prednisone and doxycycline if it wasn't better this morning. Well, it's worse, so I started both of them (I always have a filled prescription for both on hand). I have cancelled out of a lunch with my best friends tomorrow, an activities meeting the following day, and although I'll log onto Right To Breathe this afternoon and OxyTalk tomorrow, I may be on mute so no one will head my croaky ๐Ÿธvoice or cough.


Just a reminder to everyone - have a COPD Action Plan and follow it - hopefully by my catching this fairly early, I'll be good by the weekend.

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

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

Wyliewoman

Wyliewoman

Good morning my name is Lynn, Iโ€™m exhausted today but doing okay. Yesterday was a hard day as Iโ€™m caring for my older brother 67 who has had COPD since 2019. Iโ€™m new here and looking for support and suggestions! 

1 day ago

DebbieB.-Connecticut State Captain

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

You could use canned corn. It will have a bit of a different taste. Yes! Drain the corn very well. You could pat it dry with paper towels, too. Pamper it...Lol! ๐Ÿ˜€Can't help but be "corny"! ๐Ÿ˜†...

1 day ago

Karen Deitemeyer - Florida State Captain

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

I wonder if this could be made with canned corn which has been drained well?...

1 day ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager

๐Ÿ’™ National Sons and Daughters Day ๐Ÿ’™

Today is a day to celebrate our sons and daughters โ€” the ones we raised, the ones who help take care of us, and even those special people who somehow became family along the way. โค

Living with COPD can change family roles in ways we never expected. Sometimes a son or daughter becomes the person reminding us about an appointment, carrying the oxygen, driving us somewhere, checking in after a rough day, or simply asking, โ€œHow are you doing today?โ€

But here's something else worth remembering: they're watching us, too.

Every time we keep up with our medications, finish pulmonary rehab, make ourselves get up for that walk, quit smoking, ask for help when we need it, or keep moving forward after a difficult day, we're showing them something about taking care of ourselves.

Maybe that's part of what we pass along โ€” not just our stories and family traditions, but a little determination, resilience, and knowledge too. ๐Ÿ’ช

And speaking of what we pass along, here's one important COPD family-health reminder: If you have COPD and haven't been tested for Alpha-1 Antitrypsin Deficiency, ask your healthcare provider about testing. Because Alpha-1 is inherited, knowing your status can provide important information for you and potentially your family.

But mostly, today is about celebrating them. ๐Ÿฅฐ

So tell us: Do you have a son, daughter, or an "unofficial" son or daughter who's been part of your COPD journey? Give them a little shout-out below. ๐Ÿ‘‡

And sons and daughters in our community โ€” we see you, too. Thank you for every ride, phone call, grocery run, oxygen tank carried, appointment remembered, and especially for simply being there. ๐Ÿ’™

1 day ago

Whyz

Whyzanswered the question Is anyone using Trimbow for COPD

Hi i am on heart meds and Trimbow, took a while before things settled may be only a slight change but feeling better than i did
David Mannino, MD (Chief Medical Officer, COPD Foundation )Caroline West Virginia State CaptainDinna25and 1 other also answered the question David Mannino, MD (Chief Medical Officer, COPD Foundation )and 3 others also answered the question

1 day ago

DebbieB.-Connecticut State Captain

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

๐ŸŒฝ๐ŸฅžCORN PANCAKES๐ŸŒฝ๐ŸฅžGreat recipe for times when you have company! Also great to serve at brunch!2 cups fresh corn kernels, cooked and cooled 2 cups flour 2 tsp. baking powder1 tsp. salt3 large eggs, at room temperature 3/4 cup milk2 tbsp....

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy terrific Tuesday!
Wake up with a smile on your face. Start your day with a positive outlook. You're good to go! ๐Ÿ˜ƒ๐Ÿคฉ

1 day ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captain

Yay! I had a great visit with my lung doc as always. I asked him if he could order me an overnight pulse oximetry test with my concentrator set at 1 liter/minute continuous flow, just to see how I will do at that setting. If it works, I might be able to use a POC that delivers pulse as well as up to 1+ liter/minute when we travel instead of requiring two machines--one that delivers continuous flow for sleep and one that delivers pulse that I can wear and move around with. That is exciting to me and I don't have to acquire yet another piece of medical gear to add to my collection (a recording pulse oximeter). He said that the Durable Medical Equipment company (probably Apria) will mail me the test and have me mail it back.  Since I've already met my out of pocket maximum due to my copay for my biologic, there shouldn't be any charge to me for having the testing done.

1 day ago

QQ

QQ

Has anyone here had successful surgical intervention?

2 days ago

QQ

QQ

How do I ask a question to the community?

2 days ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager

๐Ÿ˜ด Happy National Lazy Day! ๐Ÿ›‹๏ธโ˜•

Well, would you look at thatโ€ฆ itโ€™s Monday, and apparently weโ€™ve been given official permission to be lazy.

I donโ€™t know who planned National Lazy Day for a Monday, but I think they deserve some recognition. ๐Ÿ˜‚

After a summer of heat, humidity, wildfire smoke, appointments, treatments, medications, errands, caregiving, and simply trying to keep up with life, maybe today is a good excuse to lean back instead of leaning in.

Put your feet up. ๐Ÿฆถ
Stay in the comfy clothes a little longer.
Watch the show youโ€™ve already seen 14 times. ๐Ÿ“บ
Sit somewhere cool with a good book. ๐Ÿ“–
Take a nap without feeling like you need to explain yourself. ๐Ÿ˜ด
And if something can wait until tomorrowโ€ฆ well, National Lazy Day says we should at least consider it. ๐Ÿ˜‰

Sometimes slowing down isn't being lazy at all. When you're living with COPD, bronchiectasis, NTM, or caring for someone who is, conserving your energy and giving your body a chance to recharge can be pretty important.

So today, give yourself permission to take things a little easier.

And I'll leave you with a bit of wisdom from Dagwood Bumstead:

โ€œYou canโ€™t teach people to be lazy. They either have it or they donโ€™t.โ€ ๐Ÿ˜‚

So, 360 Socialโ€ฆ how are YOU celebrating National Lazy Day?

Me? Iโ€™m thinking feet up, something cold to drink, and absolutely no unnecessary movement. ๐Ÿ˜Ž๐Ÿ›‹๏ธ

Happy Monday, everyone! ๐Ÿ’™

2 days ago

TonicDk

TonicDkanswered the question CPAP CAUSING STOMACH GAS

Yes , CPAP use gives build up of gas, its a common thing, not for all, but most users. i use CPAP, sometimes i get bloated, a brisk walk takes care of that. A bloated stomach makes i harder to breathe.
Caroline West Virginia State Captain also answered the question Caroline West Virginia State Captain also answered the question

2 days ago

Sue F

Sue F

Ok so far. As the day progresses I get worse.. I was born and raised in Connecticut in Woodbury. 
I had a COPD flare and went to the hospital emergency room because I wasn't sure what it was. I had another COPD flare last week at the grocery store. My doctor has taken me off prednisone I was taking 5 mg a day as a maintenance drug. I had blood work done on Friday and I'm waiting for the doctor to call me this week.

2 days ago

Sue F

Sue F

Deb9 I was born and raised in Connecticut Woodbury. I now do 6 months in Florida in the winter and 6 months here in the summer

2 days ago

DebbieB.-Connecticut State Captain

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

๐Ÿ“STRAWBERRY PINEAPPLE SPRITZER๐Ÿ1 cup fresh strawberries, hulled1 cup diced fresh pineapple 1 tbsp. honeyJuice of 1 lime1 1/2 cups sparkling waterIcePlace the strawberries, pineapple, honey, and lime juice in a blender. Blend until smooth. Pour the...

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.