COPD360social welcomes new member Tcd who joins 66,153 current members of our community. Weโ€™re glad you're here!

baileygiglio

baileygiglio

Hello everyone! You have a chance to share your experience in an upcoming forum that could impact access to a COPD treatment. You may qualify for this opportunity if you:

- Live in the state of Maryland
- Have experience with Dupixent (dupilumab)

If you qualify and are interested in sharing your experience, please reach out to me at bgiglio@copdfoundation.org. Thank you!

16 hours ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager๐Ÿ’™ 360social, Letโ€™s Rally Around Our Karen! ๐Ÿ’™

Iโ€™m going to get a little personal with this one because our sweet Karen from Florida โ€” one of my besties and truly one of my favorite people โ€” has something pretty big coming up.

Karen will soon be having Zephyr valves placed, and Iโ€™d love for our 360social family to wrap around her with all the love, encouragement, and good thoughts we can send her way.

Karen, I know there are probably a million emotions going through your head right now. But I hope somewhere in all of that, you can feel just how many of us are standing right there with you and cheering you on.

My hope is that these valves bring you easier breaths, some real relief, and more good days to get out there and enjoy the things you love. You deserve every single one of them. ๐Ÿ’™

Youโ€™ve spent so much time around here encouraging other people, sharing what youโ€™ve learned, and just being Karen โ€” which is pretty darn special all by itself. Now itโ€™s our turn.

So come on, 360social. Letโ€™s remind my favorite Karen from Florida just how loved she is. Drop her a little love, encouragement, or a simple โ€œWeโ€™ve got you!โ€ below.

Karen, youโ€™ve got a whole community cheering you on โ€” and you better believe Iโ€™ll be right there at the front of the line. ๐Ÿ’™

2 days ago

Tcd

Tcd

I have asthma overlap stage three emphysema. Doc is considering valves or volume reduction surgery. Iโ€™ve been doing some research and it seems even though the lung volume reduction surgery is more evasive the outcome is better. Can anyone share their experience with these procedures? 

5 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Good afternoon, friends. I hope you are having a nice Friday!
I just want to let you know about my husband Bruce's health condition. Those who know me will remember the whole story.
Bruce has been diagnosed with cancer once again. It has been spreading in his neck. It's an aggressive cancer. It has started eating away at the nerve near his vocal cord, which is paralyzed. There is cancer somewhere else is his body, but they have to find it. 
He has been struggling to speak and swallow. He's still going to work every day. 
The cancer is 100 percent treatable and curable. His neck oncologist will be treating thr cancer with radiation and chemical. He'll be out of work for 2 months, and will be in a great amount of pain.
He has a positive outlook, and the will to recover. Very important! 



14 hours ago

Wildebeest

Wildebeestasked the question: CPET result is here

If anyone has any comments I'd be interested. It was done on a bike. Effort was maximal stopping due to breathlessness. HR peaked at 98% of predicted maximum. Breathing reserve was 23% (normal). Peak lactate was low at 5 when it should be over 8. Peak …

14 hours ago

Lauriek64

Lauriek64

I'm doing ok. I have good and bad days

15 hours ago

Patrick Moose

Patrick Mooseanswered the question Has anyone been involved in stem cell treatments? I understand there is no hard evidence.

To follow up on my experience - I have asthma / COPD overlay which mostly manifests in chronic bronchitis. My ox levels are stable (96-97) but Iโ€™m in bed 2-4 months out of the year with bronchial flares. If I get a virus my life is hell for the next few …
Upstate NY MikeKaren Deitemeyer - Florida State CaptainJeanO53and 2 others also answered the question Upstate NY Mikeand 4 others also answered the question

15 hours ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager

๐Ÿ‡บ๐Ÿ‡ธ September 11 โ€” A Day to Remember

Today is Patriot Day and a National Day of Service and Remembranceโ€”a day to pause and remember the lives lost on September 11, 2001, the families whose lives were forever changed, and the first responders and countless others who stepped forward to help.

For our lung health community, there is another part of this story we understand especially well. The dust, smoke, and debris surrounding Ground Zero affected the health of first responders, recovery workers, survivors, and others for years afterward. Some are still living with those effects today.

But I also find myself thinking about the days that followed.

In the middle of unimaginable sadness, people showed up for one another. Neighbors checked on neighbors. Strangers helped strangers. People donated blood, brought food, volunteered, listened, hugged a little tighter, and seemed to pause long enough to remember just how much we need each other.

I wish it didn't take tragedy to remind us of that.

Maybe part of remembering September 11 is holding onto a little of what came afterwardโ€”the kindness, compassion, service, and willingness to look out for the person beside us.

And in a way, that's something we see right here in this community every day. Someone answers a question. Someone checks on a friend. Someone simply says, "I've been there too." Those may seem like small things, but sometimes they're anything but small to the person who needs them.

So today, we remember those we lost, those who ran toward danger to help, and those who continue to live with the physical and emotional effects of that day.

And maybe we can honor them in one more wayโ€”by being a little kinder, checking on somebody, and remembering that we're a whole lot stronger when we take care of each other. โค๐Ÿค๐Ÿ’™

16 hours ago

Kattlyne

Kattlyne

Hello and happy Friday everyone!! This is day 3 of not smoking! As my lungs have begun to clear out, ive had some shortness of breath and clearing of mucous. Ive been using one puff of my albuterol inhaler in the morning, at noon and at bedtime. Last night i had severe cramps in both feet and ankles. Woke me up every hour. I did wear hard, flat sandals all day at work and i also sit at a desk job all day. I was reading that albuterol might also cause cramps. Has anyone had any experience with that? Also, the last time i was at my doctor's office about 2 months ago, he gave me a 2 week sample of trelegy to try. I havent done it yet as i dont like to try new meds if i dont have to. Anyone find trelegy helpful? I hope you all have a great weekend! Im so happy that fall is coming! 

16 hours ago

LFAOMGA

LFAOMGA

So many thoughts today remembering 9/11
After 25 years it still makes me cry
Images never to be forgotten 
So much suffering and grief
So many rushing in to help
God Bless America



18 hours ago

DebbieB.-Connecticut State Captain

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

๐Ÿฅ„YOGURT &HONEY FRUIT CUPS๐Ÿฅ„4 1/2 cups cut up fruit, such as pears, apples, grapes, and bananas 3/4 cup vanilla yogurt1 tbsp. honey1/2 tsp. grated orange zest 1/4 tsp. almond extract Divide the fruit among 6 dessert dishes.Combine the yogurt,...

19 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Fluffy Friday from my oldest orange boy Pumpkin Pie, aka Punkie! ๐Ÿงก We both wish everyone a pleasant, easy breathing day! ๐Ÿ˜Š

23 hours ago

NikkiD

NikkiDanswered the question Age 33 Diagnosed with COPD

Hi, I know I'm a little late to the post, but I was diagnosed with COPD at 33 aswell and have never met anyone else that was! My FEV1/FVC is 33 so a bit worse than yours. I'm now 35 and I have to say I feel so much better than when I was diagnosed. …
KezeCatch22Liza Mand 8 others also answered the question Kezeand 10 others also answered the question

1 day ago

NikkiD

NikkiDasked the question: 35F with severe COPD, anyone else going through this at my age?

I was diagnosed with severe emphysema at 33 years old, after years of struggling to breath and coughing that was diagnosed as asthma because I was "too young" for it to be anything else. I've been told I will eventually need a double lung transplant, …

1 day ago

Puzzie

Puzzieanswered the question Does pulmonary rehab help?

I've participated in formal pulmonary rehabilitation three times in the past 14 years. Not all pulmonary rehabilitation programs are the same, but this program is excellent. Nutritional education, physical training, and psychological help. Sessions were …
David Mannino, MD (Chief Medical Officer, COPD Foundation )BarePhyliss DiLorenzo NJ State Captainand 3 others also answered the question David Mannino, MD (Chief Medical Officer, COPD Foundation )and 5 others also answered the question

1 day ago

Puzzie

Puzzieanswered the question Is going blind worth it? (Advare experience)

Most medications used to treat COPD are corticosteroid and come with warnings about glaucoma, osteoporosis, and a whole host of other side effects. With a family history of glaucoma I have always been careful to get my eyes checked annually. I also get a …
das23HIcopd - Hawaii State CaptainCaroline West Virginia State Captainand 5 others also answered the question das23and 7 others also answered the question

1 day ago

Puzzie

Puzzieasked the question: Oxygen and BiPap equipment providers and your doctor

When you have issues about medical equipment and dealing with equipment providers, what assistance do you expect from your pulmonology practice? When the equipment providers ask for updated medical records and tests, I had to constantly follow up with …

1 day ago

Puzzie

Puzzieanswered the question I am Wondering if anyone is using the injection of dupixent and if so is it helpful for better breat

I started Nucala in July. The doctor didn't say anything about improved breathing but rather emphasized that it helps prevent exacerbations.
Taryn TarverHIcopd - Hawaii State CaptainGAnneand 1 other also answered the question Taryn Tarverand 3 others also answered the question

1 day ago

JeanO53

JeanO53Quick share...
. Some days I just have to get outside.   Yesterday, I worked and then attended OxyTalk.  Afterwards, I grabbed my camera and went for a drive.  Nothing much happening at the park, but on my way home this Red Tailed Hawk flew past my car and then settled on a power line pole.  
- - If you can, get outside today!  You never know what you're going to see.  And then tell us what you saw!!

1 day ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager

๐Ÿ’ก Happy National Swap Ideas Day, 360social!

Now this is one that feels like it was made for us.

One of the best things about this community is that we get to learn from each other. Sometimes itโ€™s something big, but sometimes itโ€™s one little trick that saves some energy, makes a task easier, or turns a โ€œNope, not happening todayโ€ into an โ€œOkay, I can do this.โ€


And those little things can make a pretty darn big difference.

So today, letโ€™s swap ideas!


If youโ€™re living with COPD, what have you figured out along the way that makes life a little easier? Maybe it helps with pacing, conserving energy, using oxygen, getting through chores, getting out of the house, or just having a better day.

And caregivers, youโ€™re definitely part of this one too! What have you learned that helps you or the person you care for? A routine, shortcut, piece of equipment, way of organizing thingsโ€”whatever works.

Thatโ€™s one of the greatest things about 360social. Something you figured out through trial and error might be exactly what somebody else needs today.

So letโ€™s hear them! Whatโ€™s one idea, trick, shortcut, or โ€œwhy didnโ€™t I think of that sooner?โ€ thatโ€™s worth sharing? ๐Ÿ’ก

1 day ago

  • NewestOldestClick to View All Comments6 comment(s)
  • DebbieB.-Connecticut State CaptainThat is a good idea, Brandon. I sometimes shower after using my maintenance inhaler because that's when my airway is as clear as can be. 
    I also use my rescue inhaler as a preventative. It really does help! 1 day ago
  • Caroline West Virginia State CaptainA good terry cloth robe can help by making it much easier to dry off.  Amazon puts them on sale periodically.6 hours ago
  • Caroline West Virginia State CaptainThe robe wicks up the water from your body.6 hours ago
DebbieB.-Connecticut State Captain

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

Oh, yeah! My Gramma called it Apple Brown Betty. No matter what we call it, it's delicious! Thanks, Karen! ๐Ÿ...

1 day ago

Karen Deitemeyer - Florida State Captain

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

Yes!! I make this a lot!! It's my son's favorite dessert and whenever he comes for a visit, it's on the menu. But we call it Apple Brown Betty....

1 day ago

DebbieB.-Connecticut State Captain

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

๐Ÿ๐ŸEASY APPLE CRISP๐Ÿ๐Ÿ10 cups peeled, sliced Granny Smith apples1/2 cup sugar1 tsp. cinnamon, divided 1 cup flour1 cup packed light brown sugar 1/2 cup quick oats1 tsp. baking powder1/4 tsp. nutmeg 1/2 cup cold butter, cubedPreheat the oven...

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Thursday, friends! 
Never, ever give up! There is always something to look forward to. Keep focusing on all the good things in life. Don't forget to wear that great big smile! A smile never goes out of style! ๐Ÿ˜ƒ

1 day ago

Ken Benson-California Lung Health Advocate and State Captain

Ken Benson-California Lung Health Advocate and State Captain

106 degrees today.

2 days ago

Kaija

Kaija

Not great I am wondering how to see if I need a respiratory therapist

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.