COPD360social welcomes new member hanna hellis who joins 66,497 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 

2 days 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

40 minutes ago

hanna hellis

hanna hellisanswered the question Having COPD and going on vacation.

I would definitely speak with your oxygen provider and pulmonologist before spending money on another concentrator. One important thing to check is whether the smaller models you're considering provide continuous flow or pulse-dose delivery. Those aren't …
JAH5001Louise Hobden NH State CaptainJeanO53and 1 other also answered the question JAH5001and 3 others also answered the question

1 hour 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

11 hours 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 3 hours ago
  • das23Google the 4-7-8 breathing exercise. I think this has helped me when I've had trouble getting to sleep2 hours 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. 
    2 hours 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

13 hours 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

22 hours 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.

1 day 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.

1 day 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

1 day 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

1 day 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

1 day 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

2 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

2 days ago

RhyanH

RhyanH

Physically okay, mentally not do good 

2 days ago

Terri Genther

Terri Genther

Breathing is bad even with oxygen 

2 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’™

2 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!...

2 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

2 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. 

2 days ago

Tedward

Tedward

Living the dream lol

3 days ago

Caroline West Virginia State Captain

Caroline West Virginia State Captain

Another reason to keep on keepin on.  I have not been having great success in trying to celebrate COPD awareness month.  I have not received the proclamation from the governor's office and some other things have fallen by the wayside.  Today I did confirm my visit with the nursing students at a local college,   Now I feel much better.  It feels good to do good.

3 days ago

JeanO53

JeanO53commented onThe Breath Gap: How COPD Affects Women Differently

This is a topic that comes up from time to time.Type the work "Bra" in the Search Box on the very top left side of the page and the previous discussion will be available for you to view....

3 days ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager

๐Ÿณ It's National Men Make Dinner Day! What's Cooking, Everyone? ๐Ÿฝ๏ธ

Happy Thursday, everyone!

Well, here's a holiday that could get interesting! It's Men Make Dinner Day, and whether you're a master chef or someone who considers making toast a culinary achievement, today might be a fun day to try something different!

I've always loved cooking, but I also know that some days, especially when you're living with COPD or caring for someone who is, getting dinner on the table can feel like a pretty big job.

That's where a little planning and a few shortcuts can make a heck of a difference! Finding something nutritious, easy to prepare, and that actually sounds good can be a challenge. And that's one reason I love all the wonderful recipes Debbie shares with us. Sometimes you see something and think, "Oh, now THAT sounds good! Why haven't I tried that?"

And you know, cooking reminds me a little of managing COPD. Having a good recipe helps, but so does having a plan! Our COPD Action Plan is a bit like that trusted recipe. It helps us recognize changes in our breathing, know what steps to take, and when to reach out for help. Of course, that's one recipe we don't want to improvise!

So, what's cooking in your corner of the world? Do you have a favorite easy dinner, a kitchen shortcut that saves you energy, or a recipe that's just too good not to share? And gentlemen, are any of you taking over the kitchen tonight?

Whether you're doing the cooking, helping with dinner, or just enjoying what's on the plate, I hope there's something delicious in your day!

Happy Men Make Dinner Day, everyone! ๐Ÿฒ๐Ÿ’™

3 days ago

DebbieB.-Connecticut State Captain

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

๐ŸŽAPPLE-STUFFED PORK CHOPS๐ŸThis is a lovely meal, because you can serve this on Thanksgiving, or on Christmas! Your guests will love having something different! 1 tbsp. finely chopped onion 1/4 cup butter 3 cups soft bread cubes2 cups finely...

3 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Thursday! For all of our new members, we would like you to know that November is COPD Awareness Month! Please mention our website to your family and friends. We would love for them to pay us a visit!
We would love to hear from you! What is everyone doing to help promote COPD Awareness Month? My Mom is wearing her Lung Health Champion pin whenever she goes out. Thanks for your support, Mom! My sister will be wearing hers to work each day when she goes back after her vacation ends this week. 
Wishing all of you an absolutely wonderful day!
GO ORANGE!!! ๐Ÿ”ถ๏ธ๐Ÿงก๐Ÿ”ถ๏ธ๐Ÿงก๐Ÿ”ถ๏ธ

3 days ago

Smithcar

Smithcar

Not to bad.   Had an er trip via ambulance a week ago friday.  Finally recovering 

4 days ago

QuinnB

QuinnBanswered the question Montelukast and mental health

Iโ€™ve been using Montelukast for about 3 years now and in combination with Dupixent and Trelegy, I havenโ€™t had a flare-up in 3+ years now. I count my blessings and think the benefits certainly outweigh any negative side effects. I have had no bad side …
David Mannino, MD (Chief Medical Officer, COPD Foundation )Dinna25Otterand 7 others also answered the question David Mannino, MD (Chief Medical Officer, COPD Foundation )and 9 others also answered the question

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.