COPD360social welcomes new member Kathy Lynn who joins 65,563 current members of our community. Weโ€™re glad you're here!

Coach Brandon - Community Manager

Coach Brandon - Community Manager

๐Ÿšจ International Panic Day ๐Ÿšจ

Today is International Panic Day... which means if you're going to panic, today's apparently the official day for it! ๐Ÿ˜„

But before we all start frantically searching for misplaced reading glasses that are already on our heads, let's try something different.

Whether you're living with COPD, bronchiectasis, NTM, caring for someone you love, or simply juggling life's daily surprises, it's easy to feel overwhelmed from time to time.

So today, instead of panicking, let's practice a little "pause."

๐ŸŒฟ Sit down for a moment.
๐ŸŒฟ Put on your favorite song.
๐ŸŒฟ Give your pet an extra cuddle.
๐ŸŒฟ Step outside and enjoy a little sunshine.
๐ŸŒฟ Take a few slow, comfortable breaths.
๐ŸŒฟ Remind yourself that not everything has to be solved today.

Some days, the laundry can wait.
The dishes can wait.
That email can wait.

Your well-being can't.

๐Ÿ’™ For today's International Panic Day challenge:

Tell us one thing you're NOT going to worry about today.

Maybe you're letting go of a chore, a stressor, a "what if," or simply giving yourself permission to rest.

I'll start:

๐Ÿ‘‰ I'm not going to worry about having a perfect day. Good enough is good enough.

What about you?

13 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captaincommented onListening to Your Lungs: When Itโ€™s Time to Speak Up

I agree that it would be worthwhile to see if you may qualify for any patient assistance program(s) and/or coupons did Dupixent. I did get coupon from manufacturer, and it made the cost free or $35/shotโ€”I canโ€™t remember which. ...

4 hours ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State Captaincommented onListening to Your Lungs: When Itโ€™s Time to Speak Up

SDM - the pharmaceutical company that manufactures Dupixent might have a patient assistance program. You might want to check into that....

6 hours ago

SDM

SDMcommented onListening to Your Lungs: When Itโ€™s Time to Speak Up

I have a NP pushing dupixant. I say no and she insists she can get it free to low price. My insurance says a copay of at least 1000 dollars. I tell the NP every visit i can't pay that. Then she said okay. She can't get it cheaper. Next visit it...

9 hours ago

DebbieB.-Connecticut State Captain

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

Hi Karen! This is a yummy treat! Where I shop, they have fruit nectar on the International Food aisle near the Goya products, plus on the juice aisle. ๐Ÿ ...

13 hours ago

Community Announcements

Community Announcementsadded a new article Comprehensive Tobacco Treatment: Moving Beyond One-Size-Fits-All Care

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

Smoking and tobacco exposure are primary risk factors for chronic obstructive pulmonary disease (COPD) progression and mortality, accounting for up to 80% of COPD-related deaths in the United States.1 People with disabilities (e.g., individuals who have physical, cognitive, psychiatric and sensory impairments) have disproportionately higher rates of tobacco use and suffer worse health outcomes as a result.2 Addressing this disparity requires comprehensive, evidence-based tobacco treatment that combines counseling, pharmacotherapy, and ongoing follow-up support.2 As tobacco patterns continue to evolve with products such as e-cigarettes and vaping3,4, health care must provide patient-centered, inclusive treatment that is accessible for all patients.

13 hours ago

Bare

Bareanswered the question Does pulmonary rehab help?

yes it does. Iโ€™ve been going to rehab four days a week for the past 5 years. Helps strengthen your lungs as well as other muscle groups that support your lungs. Best of success with your journey
Phyliss DiLorenzo NJ State CaptainCaroline West Virginia State Captainbrydyand 1 other also answered the question Phyliss DiLorenzo NJ State Captainand 3 others also answered the question

13 hours ago

Karen Deitemeyer - Florida State Captain

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

Oh my, this sounds decadent!! I've never seen pear nectar - I hope it's available in the grocery? Or maybe have to order it?...

13 hours ago

DebbieB.-Connecticut State Captain

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

๐Ÿ๐ŸBUTTERSCOTCH PEARS๐Ÿ๐Ÿ โ–ถ๏ธSLOW COOKER RECIPEโ—€๏ธ2 large firm pears1/2 tbsp. freshly squeezed lemon juice 2 tbsp. packed light brown sugar 1 1/2 tbsp. butter, softened 1 tbsp. flour 1/4 tsp. cinnamon 1/8 tsp. salt1/4 cup chopped...

15 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Thursday, friends! I have an idea!๐Ÿ’ก How about getting a nice journal for yourself, and a few nice pens, in different colors?! You could jot down your thoughts, and all of the positive things in your day! 
Wishing everyone a pleasant, easy breathing day! ๐Ÿ˜Š

20 hours ago

Bob puff dragon

Bob puff dragon

I was wondering if anyone can recommend a good quality CPAP machine the price varies so much from 1200 on Amazon to over 3000 at other places the wife checked out.
I know quality costs more but have no idea about them at all.


Any advice would be greatly appreciated.

21 hours ago

  • NewestOldest
  • JazzybeanHi Bob puff dragon, here is my experience with c-pap. I have been using my ResMed AirFit N30 machine for the past two years. I love it. It's light, not that noisy and has a small screen much like a cell phone. I use the pillow mask just because I am somewhat claustrophobic and the pillow Mask works well for me.
    The machine is set up to be used as a C-pap or can be used as a bi-pap which is most likely what you will need. I don't know about the cost. I am also not sure where you are located. I am in New York State, (should be the same all across the country) and for me Medicare covers most of the cost. I pay $10.00 a month and every three month by new filter, hose and pillow for mask. So, every three months I pay the $10 plus 30 for supplies. I have had No issues with the machine. I visit my grandchildren in another state quite frequently and my little machine travels quite well. I also have emphysema with lung scarring and hyper inflated lungs,  for now, they tell me it's mild according to my DLCO.  Some days it sure does not feel like it, but, then that's another story. But, I got the ResMed C-pap machine precisely because I know as I travel the Emphysema road, my hyper inflated lungs, and destruction of alveoli  will most certainly lead to more and more CO retention.  Then, my c-pap can easily be switched to a bi-pap. 
    I hope this helps. I am so glad you have a wife who puts her foot when needed :)  14 hours ago
  • Ken Benson-California Lung Health Advocate and State CaptainI have a Resmed Airsep 11 that I am quite satisfied with.  It sends information to the app I my computer for me to see and sends it to my provider as well.40 minutes ago
Bob puff dragon

Bob puff dragon

Hello friends,thought l would post an update on what's been going on these past days.
My wife finally put her foot down and drove me to emergency, admitted immediately and diagnosed and treatment started before blood test results came back due to severe lab backlog.


Have been dealing with CO2 retention for years, truly had no idea what it was really about, l tend to not want to know a lot of things l should .l have a intersticial rheumatoid arthritis lung deal along with my stage four emphasema.So my sob is sometimes not to pretty .
While l was having the recent radiation therapy for the lung cancer l had to stop methotrexate injections for three weeks, which l have been taking for 12 years,which is supposed  to lower ra markers and make the ra manageable .This apparently cause a severe ra  flair,which along with the radiation and usual stuff caused a pH lowering which turned my blood to acid and causing all kinds of nasty organ related things.  They are cpaping me like crazy and pumping intravenous bags of who knows what non stop.
I was supposed to be discharged this evening but when the doctor did rounds he said levels are still to low so now not sure when
I can go home,anyway could not be happier that l now have a indicator as when to seek medical intervention and a treatment plan in place now to treat it
If you are later stage COPD and notice your breathing is, getting more difficult than normal ,you may want to ask your doctor about the possibility of retention issues . It makes no difference if your blood ox level is high. 
Apparently this condition affects about 1 in10 patients so most doctors do not look for it so read up and become aware of the symptoms so you don't end up like me in a world of ca ca. Hope this helps someone who may be experiencing this and not realize it.

That's the scuttlebutt of what's new in our life l hope everyone is having a better go of it but l did not set the bar to high.

21 hours ago

Oxygen tank Man

Oxygen tank Man

22 hours ago

Oxygen tank Man

Oxygen tank Man

Hi, Hope everyone keeping fine and enjoying the world cup in USA. Out on the North Yorkshire moors at week end in trail race. 

22 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captaincommented onListening to Your Lungs: When Itโ€™s Time to Speak Up

I started in 11/2024 with Dupixent every 2 weeks, because it was the only biologic specifically approved for patients with COPD, frequent exacerbations and high eosinophil levels. In 9/2025, the side effects were intolerable to me, so I switched to...

1 day ago

Ruby Smith Hall

Ruby Smith Hall

Exhausted and canโ€™t sleep without waking up due to pain or just being uncomfortable. I have COPD (end stages) and CAD, with oxygen stat of 5l constantly. I recently had dbl MRSA pneumonia && was hospitalized. The month before I had pneumonia with the H-flu and had to be intubated. Itโ€™s become a regular thing. Any tips on how to avoid it 

1 day ago

Mom.Ellen

Mom.Ellen

 I think it is interesting to mention I have been on Dupixent for about 5 years for severe eczema with complete healing of my eczema and continue to use it to keep my skin healthy.  I recently saw a commercial where it showed Dupixent is also good for COPD.  I find that hard to believe since I have been on it for 5 years and have not had any relief of my severe COPD.  Has anyone else heard that Dupixent helps with COPD or have been prescribed Dupixent for COPD?

1 day ago

Evie

Evie

 Advice on how to stop nasal crusting. Have used nasal gel, netti pot, and if I remove the crust it bleeds. So what do others do?

1 day ago

ZaydeBob

ZaydeBob

I just spent 3 days in the hospital very ill with infectious colitis that spread to my bloodstream. Thankfully, 3 days of two IV antibiotics got the infection under control. They did CT scans of my head, chest, and abdomen. I got home yesterday afternoon and reviewed my lab reports. In addition to having 8 abnormal blood factors, I discovered that I now have scattered bullous emphysema as well as paraseptal. A few months ago, I was also diagnosed with chronic Interstitial Lung Disease caused by Rheumatoid Arthritis (RA-ILD). The doctor in the hospital told me that my colitis caused bloodstream infection could have been fatal if not promptly diagnosed and treated. The radiologist also recommended that I be assessed for lung cancer.

I have follow-up appointments with three doctors, including my pulmonologist. I will likely need multiple drugs for the combo of lung diseases.

The bullous emphysema (BE) appears to be the most serious. 

I am also recovering from emergency retina surgery last Tuesday to repair five horseshoe-shaped tears in my right eye.

Needless to say, I've hit a rough patch. I just hope the treatments will not be too rough.

1 day ago

Wollop2161

Wollop2161

Ok

1 day ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State CaptainJoin our support group meeting, TODAY, Wednesday, 4-6pm Eastern (10-noon Hawaii Standard Time).  Details in attached flyer and on our website, www.hawaiicopd.org.  See you there!

1 day ago

Mom.Ellen

Mom.Ellen

Thank you everyone for the wonderful welcome messages.  I already feel like I belong!

1 day ago

brydy

brydy

heres how to make shibolto:
2 or so kohlrabi, peel them & cube into 1.5 x 1.5" cubes or something close :) 
heat olive oil in a pan & put the kohlrabi in, around medium heat & let it cook for about 15 mins or so, stirring so that all sides get golden. add in 1 chopped onion & some mushroom slices, continue cooking for another 10 mins or so or until the onion is cooked. now add a pound of ground lamb (can use ground beef but its not quite as tasty), brown the meat, breaking it up well. season w salt & pepper & a tsp of 7 spices. (you can make your own 7 spice mix if u cant find it: allspice, black pepper, cinnamon, cloves, coriander, cumin & nutmeg). stir thru then add 1 cup of wild rice & sautee it until its translucent, (cpl of minutes), pour in 2 cups of chicken broth. bring it all to a low boil, cover & simmer for 1/2 hr or until the rice is cooked. remove from heat & let stand for 5, fluff it up. crumble walnuts over top after plating. 
enjoy! 

1 day ago

Mom.Ellen

Mom.Ellenasked the question: Does pulmonary rehab help?

I was recently enrolled in virtual pulmonary rehab which has given me hope; I have severe COPD and was recommended double lung transplant, but that is too aggressive for me. I start virtual (on line) pulmonary rehab Monday, July 6th. If you have received …

1 day 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.