COPD360social welcomes new member Dray who joins 66,507 current members of our community. Weโ€™re glad you're here!

Mark Luttmann, COPDF Research

Mark Luttmann, COPDF ResearchExploring the Unmet Needs of Patients with Serious Respiratory Illness and Their Caregivers

Whether you are a person living with a respiratory illness or caring for someone who is, your perspective makes a real difference. Living with these conditions can be challenging, and the voices of patients and caregivers are important.

By taking part in this survey, you help others understand what kinds of care and support matter most. The information you share will help doctors, nurses, and health leaders improve palliative care around the world.

The survey should take about 20 minutes to complete, and itโ€™s best to finish it in one sitting.

Take the survey: https://redcap.musc.edu/surveys/?s=LLLEYFNX8D44D7D4

16 hours ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager

๐ŸŒช๏ธ๐Ÿ’™ Chaos Never Dies Day! Sometimes You Just Have to Roll With It!

Well, apparently today is Chaos Never Dies Day! Ha! Whoever came up with this one must have known how quickly life can go from running smoothly to everything going a little bonkers!

When you're living with COPD, or caring for someone who is, sometimes it doesn't take much to throw your day off. Maybe your breathing isn't quite what it was yesterday, you're more tired than usual, or you've got a dozen things to do and your body has other plans.

Add changing seasons and the holidays coming up, and boy, there's plenty to juggle!

But here's the thing. We can't prevent every chaotic day, but having a plan can make those days easier to manage.

That's why the COPD Action Plan is such a helpful tool. When your breathing starts changing, it's easy to think, "Oh, it's probably nothing. I'll be fine." But having a plan you've worked out with your healthcare provider helps you recognize changes, know what steps to take, and when to call your doctor before things get worse.

๐Ÿ”— COPD Action Plan: https://www.copdfoundation.org/Downloads/MyCOPDActionPlan.pdf

Sometimes managing the chaos means slowing down, using your breathing techniques, taking a break, or deciding that a few things can wait until tomorrow!

And since it's COPD Awareness Month, it's a good reminder that even an ordinary day with COPD can take extra planning, patience, and energy. Thankfully, we've got a wonderful community of people who understand!

So, when life starts feeling a little chaotic, what helps you get things back on track?

Maybe it's a breathing technique, a favorite song, some quiet time, or simply letting the laundry wait!

Here's hoping your Monday has a little less chaos and a whole lot more calm! ๐Ÿ’™๐Ÿ‚

17 hours ago

Ken Benson-California Lung Health Advocate and State Captain

Ken Benson-California Lung Health Advocate and State Captain

Music for a Monday
(Theme from) The Monkees The Monkees
https://www.youtube.com/watch?v=MADRPuAcKFA


5 hours ago

Roses1

Roses1 answered the question Montelukast and mental health

I have been taking it for quite a few years for asthma and emphazima and have had no side effects. I also take Advair and Zyrtec as I also have allergies. Everyone is different though, so what might help me may not help another.
QuinnBDavid Mannino, MD (Chief Medical Officer, COPD Foundation )Dinna25and 8 others also answered the question QuinnBand 10 others also answered the question

7 hours ago

DebbieB.-Connecticut State Captain

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

โญ•๏ธโญ•๏ธCRANBERRY BUTTERโญ•๏ธโญ•๏ธ1 cup butter1/3 cup finely chopped dried cranberries 1/4 cup honey2 tsp. grated orange zest1/8 tsp. saltIn a small bowl, beat together all ingredients until well blended. Transfer to an airtight container, OR shape...

16 hours ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State CaptainI just am popping in to let my friends know why I'm still MIA.  I'm going to post a few pixtures of the ongoing cleanup after the flood in my area.  I'm still working on it, but the trash bins are full and Waste Management hasn't come by to empty them, so no more can be put in them.  They brought in dumpsters also, but they are also overflowing!!!  For all our new members, I just want to welcome you and wish you the best.  Stop smoking, go to pulmonary rehab, and pay no attention to the supposed life-span of someone with "Stage 4".  I was diagnosed in 2001 with very severe COPD and I'm still here at age 80, traveling, shopping, driving, flying with oxygen, etc.    Oh, and since I missed Fluffy Friday, the first photo is of Ebony (taken from inside).

19 hours ago

Erica07

Erica07

Do symptoms get a little better after getting over a flareup?i feel more air trapping than usual and the purse breathing help with that.its so hard to get into a pulmonologist quickly around here but two weeks from today im going.would she be the person i talk to about pulmonary rehab.i think that will def help in my case.does air trapping happen with everyone expecially during a flareup?this is one of the scariest things ive ever faced and ive been through alot in my life and i just turned 46..ive had copd for awhile but in the beginning i was in denial and i didnt quit smoking.i was in the hospital last june for double pnemonia sepsis and respiratory failure and they told me then and i almost died.i quit smoking for a month then started back up so i can only blame myself.i have never been so depressed in my entire life i feel like my life is coming to an end.im sorry for writing so much just having a rlly hard time and nobody else in my support system understands..

20 hours ago

Erica07

Erica07

Just woke up.i wake up on the dot like every two hrs.does anyone else wake up with alot of phlemn in there mouth and dry mouth during an exerbation..this feeling of not getting enough air is so devastating.i hope my pulmonologist can help me.thank u all for all ur suggestions im doing the exercises and as soon as the steroid is outta my system il be able to relax more.i took my last dexamethasone yest but im pretty sure it stays in system for a bit.but im still here.im gonna try and relax a little more and let my body do what its gonna do.how long do these flareups usually last anyone know?u all are the best!!

20 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Motivational Monday, folks! 
We are COPD warriors! We fight the battle each and every day! 
Don't forget to spread the word! November is COPD Awareness Month! 
Keep on going strong, fellow warriors! ๐Ÿ”ธ๏ธ๐Ÿ”ถ๏ธ๐Ÿ”ธ๏ธ๐Ÿ”ถ๏ธ๐Ÿ”ธ๏ธ๐Ÿ”ถ๏ธ๐Ÿ”ธ๏ธ

23 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question If in stage 4 is it true the survival rate is 5-7 years? Have you known someone that lived longer?

My FEV1 has been about 30% for 26 years. I still travel, volunteer, cook, dine out, enjoy spending time with loved ones and do most of what I want to. I was told to get my affairs in order 26 years agoโ€”itโ€™s a work in progress. I still do well except …
David Mannino, MD (Chief Medical Officer, COPD Foundation )Liza MPhyliss DiLorenzo NJ State Captainand 2 others also answered the question David Mannino, MD (Chief Medical Officer, COPD Foundation )and 4 others also answered the question

1 day ago

Erica07

Erica07

Having a hard day.ive been having bad anxiety haven't slept well in days because of steroids but today was my last day on dexamethasone so hopefully I will be able to calm down. Little bit.ive been trying the exercises those do help.just trying to stay strong.i notice when this happens I hyperfixate on my breathing does that happen to anyone else? I just had a sleep test last week cuz I also have untreated sleep apnea and I'll get my results and some treatment options when i see my pulmonologist on the 23rd.does anyone have any suggestions on the best way to get sleep when having trouble breathing? I'm sorry for all the questions I have had copd for awhile but honestly I was in denial.i just turned 46 this wasn't what I expected but i can only move on from here and finally accept the treatment they offer me.sometimes im afraid to sleep cuz im afraid im gonna stop breathing im a mess.any suggestions on getting better rest until i can be seen in a couple weeks i am open to hear.thank u all for welcoming me with open arms as i am full of fear.its killing me

1 day ago

  • NewestOldestClick to View All Comments5 comment(s)
  • DebbieB.-Connecticut State CaptainThis may sound silly...
    My husband sometimes has a steroid IV given to him in the hospital when he has cancer treatments. This is to help keep him going. So, the steroids sometimes keep him awake at night.
    I told him to start with the letter "A". For each letter of the alphabet, think of a food you really enjoy. Such as "A", for antipasto, "B", for brownies, and so on... By the time you get to "M", your mind gets tired of trying to think of something, so you fall asleep. Hey! It works for him. ๐Ÿ™‚
    Please do give your pulmonologist's office a call. Maybe they can get you in sooner. Maybe they can give you some advice to help you until your appointment.
    Sending good vibes your way! โœจ๏ธ 1 day ago
  • das23Google the 4-7-8 breathing exercise. I think this has helped me when I've had trouble getting to sleep1 day ago
  • brydyhi erica, im sorry to hear you are struggling, there are def days that can be like that, particularly when your having a flareup like you are. 
    the prednisone is such a blessing & a curse isnt it? it makes me edgy too & unable to sleep which both cause more anxiety. I think after a few days being off it u may feel a bit more like yourself but as others have mentioned it rly would be good to give your GPs office in the morning. 
    im glad you had a sleep study done & those results will guide your docs on how best to help u get good rest. you must be exhausted & that is so overwhelming. in the meantime, 
    what Debbie mentioned is something my team suggested & I practise on ruf nites, sounds weird ik but if its racing thoughts that are keeping u awake, this really does help. dont fight w your brain. just let those images drift there for a moment then move to the next. I tend to use a word vs the alphabet & use each letter to visualize things that start w it, or a theme/room but whatever is easiest for you is the way to start. 
    the 4-7-8 breathing technique is helpful. u breathe in for 4, hold for 7, exhale for 8. it can help to relax u & prepare your body for sleep as it sort of mimics sleep breathing. 
    body scanning can help too. get comfy & focus on your feet contract the muscles & then release. then your calf, thigh, & so forth. its helpful if your body is holding onto tension. 
    pls do speak w your doctor, they can help you navigate what your going thru & get u feeling better. 
    1 day ago
Big Pig

Big Piganswered the question Portable nebulizer

I have three meds, Budesonide, Formoterol Fumarare and Ipratropium-albuterol. Thanks and I will research the spacer.
Phyliss DiLorenzo NJ State CaptainCaroline West Virginia State CaptainHoejams also answered the question Phyliss DiLorenzo NJ State Captainand 2 others also answered the question

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Sunday, everyone! May your day be filled with enjoyment, laughter, and light! ๐ŸŒž Being that this is COPD Awareness Month, we all have a good reason to smile! ๐Ÿ”ถ๏ธ๐Ÿ˜ƒ๐Ÿ”ถ๏ธ

1 day ago

JeanO53

JeanO53I got home too late yesterday to share this as a Fluffy Friday picture, but wanted to share today.
Right time, right place.  I got to watch this sweet exchange between mother and child White-tailed Deer.

2 days ago

Erica07

Erica07

I am in the middle of another copd exerbation in 2 months and i dont see my pulmonologist until the 23rd.i cant get all my air out i feel like i have to make myself breathe.im on my 3rd day of dexamethazone and 2nd day of antibiotic does anyone else experience the anxiety panic breatheing that comes with this and if so what do i do.had my oxygen chkd and thats at 98 so at least thats good.

2 days ago

myraa

myraaanswered the question Problem with Spiriva mist inhaler

I have always used spiriva dry powder inhaler, my specialist changed me to Spriva Respimat, mist, I took 2 puffs this morning for fisrt time and an hour later have had a serious side effect, I cannot breathe properly. I am resting now, sitting …
netmouseKingDeath83David Mannino, MD (Chief Medical Officer, COPD Foundation ) also answered the question netmouseand 2 others also answered the question

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Saturday, friends! Don't forget to wear orange to support COPD Awareness! ๐Ÿงก Believe me, you'll get plenty of compliments! And, add a great big smile to complete your outfit! A smile never goes out of style, and it lasts a long while! ๐Ÿ˜€
Have a wonderful day! ๐Ÿ”ธ๏ธ๐Ÿ”ธ๏ธ๐Ÿ”ถ๏ธ๐Ÿ”ธ๏ธ๐Ÿ”ธ๏ธ

2 days ago

TJ69

TJ69answered the question Drug not covered

Hik, Netmouse. I may have a ocuple of suggestions you mmay find helpful. I am on generic Advair Fluticasone/Salmeterol 250 that my then Insurance wouldn't cover because they favored Breyna. But there are and may still be having a LOT of problems with the …
Phyliss DiLorenzo NJ State CaptainNancy2024Richard DJand 3 others also answered the question Phyliss DiLorenzo NJ State Captainand 5 others also answered the question

2 days ago

brydy

brydyanswered the question There is a new article out touting a vicks mixture to cure COPD.

hi kim. like the others have said there isnt currently a cure for copd. it is frustrating isnt it? I wanted to mention pulmonary rehab to you, in case its something you had not heard of or tried, bec many ppl find it extremely beneficial & helps a …
KimStarlingDavid Mannino, MD (Chief Medical Officer, COPD Foundation )DebbieB.-Connecticut State Captain also answered the question KimStarlingand 2 others also answered the question

3 days ago

Tedward

Tedward

So thanks for accepting me this is a silly question which i think i know the aswer to but can i shower with my oxygen on cause i always gasp at end

3 days ago

RhyanH

RhyanH

Physically okay, mentally not do good 

3 days ago

Mark Luttmann, COPDF Research

Mark Luttmann, COPDF ResearchExploring the Unmet Needs of Patients with Serious Respiratory Illness and Their Caregivers

Whether you are a person living with a respiratory illness or caring for someone who is, your perspective makes a real difference. Living with these conditions can be challenging, and the voices of patients and caregivers are important. 


By taking part in this survey, you help others understand what kinds of care and support matter most. The information you share will help doctors, nurses, and health leaders improve palliative care around the world.

The survey should take about 20 minutes to complete, and itโ€™s best to finish it in one sitting.

Take the survey: https://redcap.musc.edu/surveys/?s=LLLEYFNX8D44D7D4 

3 days ago

Terri Genther

Terri Genther

Breathing is bad even with oxygen 

3 days ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager

๐Ÿพ๐Ÿ’™ Fluffy Friday! More Than Just Cute Faces and Wagging Tails! ๐Ÿถ๐Ÿฑ

Happy Fluffy Friday, everyone!

You know, one of the things I love most about Fluffy Friday is that it's about so much more than sharing pictures of our pets. It's about the comfort, companionship, and little moments of happiness they bring into our lives.

For so many living with COPD, our pets can be a wonderful source of comfort. They give us a reason to get moving, something to look forward to, and sometimes just having them curled up beside us can make a hard day feel a little easier.

But I also know that not everyone can have a pet anymore. Sometimes our health makes caring for one difficult, or we've had to say goodbye to a special companion. And that's another reason I think Fluffy Friday is so important.

When you share a picture of your pet, you might be giving someone else a smile they really needed that day. ๐Ÿ’™

I love how we've gotten to know each other's furry friends over the years. We find ourselves asking, "Where's Hazel today?" or "How's Mush doing?" or "How's sweet Ebony?" They've become part of our stories, too!

I know how much I enjoy sharing Jagger and Jasmine with you, and I get just as much enjoyment seeing all of your wonderful companions. It's another little connection that makes this community so special.

So today, let's fill our corner of the world with wagging tails, whiskers, feathers, and maybe a little mischief!

Share a picture of your pet, a favorite memory of one you loved, or just stop by and enjoy everyone else's. You don't have to have a pet to be part of Fluffy Friday!

Sometimes the smallest things, like a furry face and a wagging tail, can make the biggest difference in someone's day.

Happy Fluffy Friday, everyone! Let's see those sweet faces! ๐Ÿพ๐Ÿ’™

3 days ago

DebbieB.-Connecticut State Captain

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

๐Ÿ‡๐Ÿณ๐Ÿฅ‘HEALTHY SNACK IDEAS๐Ÿฅ‘๐Ÿณ๐Ÿ‡Here are just a few suggestions. What are some of your favorite healthy snacks?1. Greek yogurt topped with fresh berries2. Celery stuffed with peanut butter and topped with raisins. This is also known as Ants on a Log!...

3 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Fluffy Friday on this very orange day! ๐Ÿงก
My kitty Pottie Pie is here to wish everyone a great day, and to remind us all that November is COPD Awareness Month! ๐Ÿ”ถ๏ธGO ORANGE!๐Ÿ”ถ๏ธ

3 days ago

Oxygen tank Man

Oxygen tank Man Hi, Everyone one hope everyone keeping well. Still getting out there. With Autumn on us keep warm and safe. Doing London marathon next year some thing to look forward to. Out on trail race on Halloween. 

3 days ago

Tedward

Tedward

Living the dream lol

4 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.