COPD360social welcomes new member Nightsparrow who joins 61,681 current members of our community. Weโ€™re glad you're here!

Coach Brandon - Community Manager

Coach Brandon - Community Manager

Hello everyone!

A quick reminder: please refrain from sharing your personal email address in posts, comments, or profiles. This is in accordance with our Community Guidelines:

Identity and Privacy

Please remember that our social platforms are publicly available online communities and therefore any personal information you post may be viewed by the general public. Only site members are allowed to comment on posts. Members are advised not to provide their email address, home address (including city, town, or county), phone number or other identifiable information in your posts. To provide this information could result in an invasion of your privacy, and as a result your post will be removed.

20 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Wonderful Wednesday!
I hope today will be a bright and cheery day for everyone. Think positive thoughts, and keep a big smile on your face! Youโ€™ll make your day a great one, plus everyone who sees your smile will be happy! ๐Ÿ˜ƒ

4 hours ago

Minilit

Minilit

๐Ÿ˜•

4 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captain

This is interestingโ€”review with your MD and pharmacist all your meds to see if any increase your risk of falls and discuss any options.
https://www.pulmonologyadvisor.com/news/injurious-falls-common-in-last-years-of-life-with-copd/

11 hours ago

DebbieB.-Connecticut State Captain

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

๐Ÿฎ๐Ÿฅ„EASY CHIA PUDDING๐Ÿฎ๐Ÿฅ„2 tbsp. chia seeds1/2 cup almond milk1 tsp. honeyFresh strawberries, hulled and slicedPour the chia seeds, almond milk, and honey into a mason jar. Mix together well. Let stand for 3 minutes. Mix again until you see no...

15 hours ago

Community Announcements

Community Announcementsadded a new article COPD Flare-Ups: Warning Signs, Prevention, and Management

This article was written by Crystal Rothhaar, BS.

If you have chronic obstructive pulmonary disease (COPD) you may face an exacerbation, also called a flare-up. This means that your symptoms suddenly get worse. Lung infections, weather changes, air pollution, smoke exposure, or anxiety can cause or contribute to exacerbations. Flare-ups can be serious. It's important to know what to watch out for, how to prevent them, and what to do when they occur.

We talked to our partner, Village Medical, a national primary care provider. They are a valuable resource when it comes to COPD flare-ups. They can provide guidance and support in controlling these episodes.

19 hours ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota answered the question Ohtuvayre ??? Any feedback would be helpful!

I have pulmo appt next Tuesday in ND am asking if she would approve to try this don't hurt to ask and try if my insurance will cover it. I need all the help I can get would be add on another neb med I have several already!!
HIcopd - Hawaii State CaptainKaren Deitemeyer - Florida State CaptainDebbieB.-Connecticut State Captain also answered the question HIcopd - Hawaii State Captainand 2 others also answered the question

19 hours ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota Today, on 4 February, WHO joins the international community in commemorating World Cancer Day under the theme โ€œUnited by Uniqueโ€, a reminder that every cancer journey matters, and that collective action is key to ensuring compassionate, equitable care for all.  The word 'cancer' comes from the Latin for 'crab' โ€“ just like the zodiac sign. ...Cancer was first described by the ancient Egyptians.  

21 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainIt's Terrific Tuesday! ๐Ÿ˜ƒ
Wake up with a positive outlook. Start your day with a smile! ๐Ÿ˜€ You'll see a productive day on the horizon! Enjoy your Tuesday, friends! ๐Ÿ’œ๐Ÿ’œ๐Ÿ’œ

1 day ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Not typical - Heartbroken - Lack of answers

Many of us are mysteries. I was diagnosed with moderate to severe idiopathic emphysema 25 years ago at age 42 and told I might not live long. Iโ€™m still enjoying life. Iโ€™m glad you have gotten some answersโ€”for me they still have no idea why my lungs …
DebbieB.-Connecticut State CaptainT TownBrittishereand 5 others also answered the question DebbieB.-Connecticut State Captainand 7 others also answered the question

1 day ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State CaptainHmmm, this is interesting to me.  I thought valves were supposed to reduce risks!
 https://www.healthday.com/healthpro-news/pulmonology/mortality-lower-with-lung-volume-reduction-surgery-in-emphysema

Mortality Lower With Lung Volume Reduction Surgery in Emphysema

TUESDAY, Jan. 28, 2025 (HealthDay News) -- For patients with advanced emphysema, endobronchial valve placement (EBV) is associated with higher mortality and mor

1 day ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Any one on dupixenr yet? What are your thoughts. Thank you.

Well, Iโ€™m really bad at self-injecting and am going to have H give me my injections. I manage to spill it, 4 out of 4 times. Heโ€™s never spilled it not given me a bruise as i gave myself.
JohnU1Kandy State Captain of South Dakota Mary Cicago also answered the question JohnU1and 2 others also answered the question

1 day ago

JAS71

JAS71

My mother has emphysema and we are traveling to Costa Rica by plane. What should I do to make sure she does not have a flare up

1 day ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captain

Just found a place to donate an old hearing aid that wonโ€™t hold a charge or re-charge. More info at info@hearingcharities.org. The address for them is Sertoma International, 720 Main St., Floor 1, Kansas City, Missouri 64105. They will take hearing aids and supplies in any condition (including ones that donโ€™t charge) and will process the donation and email your letter of acknowledgment. You have to send a donation form from their website. Iโ€™m so happy that the hearing aid wonโ€™t be wasted as they are very expensive and it seemed a shame.


The hearing aids that still worked we got reprogrammed for someone who wanted them so now he has a set plus 2 spare sets. Since they were all purchased at Costco, the audio shop was happy to reprogram. 


Used glasses can still be donated to Lions Clubs and at donation bins at Costco and many opticians who collect and donate to Lions Clubs. 

1 day ago

Denise A Treutlein

Denise A Treutleinasked the question: Ohtuvayre ??? Any feedback would be helpful!

My doc ordered a new vile for my nebulizer called Ohtuvayre. New drug so not too much info on it. My doc told me to take it WITH all my other viles!. I already take Yupelri & Albuterol & Budesonide &Formoterol in one day in my nebulizer …

1 day ago

DebbieB.-Connecticut State Captain

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

๐ŸฝRADICCHIO SALAD๐Ÿฝ1 head radicchio 1 pear, halved and thinly sliced 1 navel orange, peeled, and segmented 1 shallot, thinly sliced 1/2 cup walnuts, coarsely chopped 1/4 cup crumbled feta cheese Dressing:1 clove garlic, mincedJuice of 1...

1 day ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager

As we begin this new week, I just wanted to send my thoughts and encouragement to all of you. I know that living with COPD can have its tough moments, but today is a new opportunity for progress, however small it may feel.

I hope you find moments of easier breathing, peace, and strength to carry you through the week ahead. Sometimes, it's the little victories that matter most, so let's celebrate them together. Youโ€™re not alone in this journeyโ€”weโ€™re in it together, every step of the way.

Wishing you all a peaceful and hopeful start to your week. You've got more strength than you know.

1 day ago

Phyliss DiLorenzo NJ State Captain

Phyliss DiLorenzo NJ State Captainanswered the question Anxiety

Meditation is wonderful in calming anxiety. Combined with breathing exercises, and grounding techniques, itโ€™s very effective. I use an app called Balance that has meditation , breathing and visualization exercise guidance. I got a free one year trial …
1fatfannyJeanO53Caroline West Virginia State Captainand 2 others also answered the question 1fatfannyand 4 others also answered the question

1 day ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota Good morning 360 want wish everyone a happy Monday and new week of the new month. Little humor to start the day.  Hope everyone a healthy week. 

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainGood morning! How many of you ended up with some snow? We ended up with about 3.5 inches of light, fluffy snow! 

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainThat's right! Pick yourself up by the bootstraps and keep on going! Yes, you CAN learn something new every day! I wish you all a marvelous Motivational Monday! ๐Ÿ˜๐Ÿคฉ

2 days ago

Charolette24

Charolette24

I am finally recovering from pneumonia. Being alone with no family and friends here struggling to breathe was the most scariest thing.  It's been my smoking that I did to myself. Breathing is so automatic but it's when you struggle to get that air in and can't it's scary 

2 days ago

DebbieB.-Connecticut State Captain

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

๐Ÿฅ”๐Ÿง…PAPRIKรS KRUMPLI๐Ÿฅ”๐Ÿง…DebbieB.'s kitchen presents...Hungarian Paprika Potatoes!4 medium Yukon Gold potatoes, peeled and diced2 tbsp. olive oil 1 medium onion, finely chopped 2 tsp. Hungarian sweet paprika 1/2 tsp. pepper3/4 tsp. salt 1 cup...

2 days ago

Sweattsj

Sweattsjasked the question: Anxiety-does this extreme anxiety/depression let up?

I was diagnosed with mild copd in December, 45 years old. My problem is the anxiety is so crippling. My doctor believes I have ptsd, but only prescribed me Prozac, however, I feel this is not touching it. My question, does this extreme anxiety/depression …

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHAPPY GROUNDHOG DAY! 
Support your local groundhog! 

3 days ago

Elie

Elie

First, I have to apologize again for not replying to some messages.I'm having a hard time navigating the site. 


My question regards anxiety. Prior to my COPD diagnosis I suffered from severe anxiety. I am in therapy and my psychiatrist checks with my pulmonologist before prescribing medication. Iโ€™ve tried Buspar, Rexulti and Caplyta with no or bad results. Is there anything that is safe, beside Buspar, anyone has had a positive result with?  Iโ€™m seriously struggling and any help is greatly appreciated.

3 days ago

  • NewestOldest
  • Karen Deitemeyer - Florida State CaptainGood Morning Elieโ€‹ - I'm sorry that I don't have an answer to your question, but hope that someone will come along soon who may be able to give you a suggestion. I wanted to give you a link to our video tutorials in the hope that they may help with navigation 360Social. Please don't apologize for not replying to a few messages - we're just glad to see you again ๐Ÿ˜
    https://www.copdfoundation.org/COPD360social/How-to-Participate/Video-Tutorials.aspx2 days ago
  • JeanO53Hi Elieโ€‹ - Iโ€™m sorry to hear you experiencing severe anxiety.  I have had some experience with anxiety, so can relate to what youโ€™re feeling.  
    .. Years ago, I tried medication but while working with my mental health therapist, I learned some techniques for managing the anxiety.   I found these more helpful than the meds; most related to breath work and centering.
    .. I was listening to a podcast the other day with an interview with Martha Beck; she wrote a book called โ€œBeyond Anxietyโ€ that sounds very interesting.  I plan to listen to it over the next few weeks.
    .. And as Karen saidโ€ฆ No need to apologize.  Weโ€™re glad youโ€™re here. 2 days ago
  • Phyliss DiLorenzo NJ State CaptainHave you tried, Lexapro? That was the only one that helped at all for me. I no longer use it, but use meditation, mindfulness, and breathing and light to moderate exercise to manage my depression and anxiety. But Lexapro did help me get over a rough patch with depression and anxiety.2 days ago
SeeJaay.73.

SeeJaay.73.

I guess I just want to know what most people with COPD do. How long do I have to live? 

3 days ago

  • NewestOldestClick to View All Comments5 comment(s)
  • Karen Deitemeyer - Florida State CaptainWelcome SeeJaay.73.โ€‹ - you've gotten good advice from HIcopd and Debbie.  I just will add that I'm going to be 79 in a couple of weeks and was diagnosed with severe COPD at age 55.   I knew I had it for 10 years prior to that.  So, in my case, doing everything mentioned above has kept me active and living a very good life.


    I noticed in your earlier post that you mentioned being very thin and having lost quite a bit of weight in the last few years - I hope that your doctor is looking into all the possible reasons for your weight loss, and I hope you'll let us know the results of your pulmonary function tests, because until you have them you do not know for certain that you have COPD.2 days ago
  • Kandy State Captain of South Dakota Hi Seejaay73 welcome!!  Live for today and be happy.  Drs do not know they can't predict.  I was given end of life 3 times at 10 yrs old,  in the 90s and 97 was told to get my affairs in order.  As you can see I am still here 76 yrs with 4 lung diseases and been on oxygen for 27 yrs.  2 days ago
  • JeanO53Hi SeeJaay.73.โ€‹ - Interesting question!  
    I do many of the things I did before my COPD diagnosis, but usually more slowly.
    Iโ€™m semi-retired and one of my favorite things to do is to spend time out in nature, walking and taking pictures as I go.  I live on the western edge of Lake Michigan and live in an urban county that has a large number of green spaces to explore and enjoy.
    .. When I was diagnosed with COPD,  my first thoughts were about death and how long I had to live.  That was 6 years ago.  Since then Iโ€™ve focused on how I want to live and how I can live the healthiest life I can with COPD; focused on what I can do instead of what I canโ€™t.2 days ago
SeeJaay.73.

SeeJaay.73.

Hi there, Iโ€™m new here and newly diagnosed with pulmonary emphysema. Iโ€™m 51 years old. Iโ€™m not sure what stage Iโ€™m at with it but I have my 1st pulmonary function test and consultation on the 26th. Iโ€™m really just not sure what to think. Iโ€™m also a female and underweight, (bmi of 14) so wondering which came first, the emphysema or the 135 lb weight loss over the past 6 years. Sorry, confused.

3 days ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Caroline West Virginia State CaptainAs das23 has said you will need a PFT to find out what stage you are in and what medication might help you.  I am almost 81 years old and had extensive weight loss as you have.


    I began putting 1tsp cocoa powder, 1 tsp Ensure powder, 1 tsp whey and 1 tsp wild honey in my coffee.  I also started putting butter and peanut butter on my bread and made sure that I had bread at every meal.


    I now weigh about 10lbs more than I would like, but my doctor is happy with my weight.2 days ago
  • SeeJaay.73.Thanks All! Iโ€™ve had a few X-rays that showed hyperinflation, flattened diaphragm and a few other things over the past few years. Shortness of breath,  chest pain and have started the steroid inhaler as well as my rescue inhaler. I suppose thatโ€™s why my family Dr. Diagnosed me with emphysema. Iโ€™m already wheelchair bound as Ive had thiamine deficient polynuropathy for 7 years now. I guess thatโ€™s why I said I was recently diagnosed. Thank you for your kind words and words of encouragement as well as your numbers! I realize thatโ€™s private but really helps me feel better! 1 day ago
  • David Mannino, MD (Chief Medical Officer, COPD Foundation )A very low BMI can result in emphysema ( lungs hyperinflate when there is not enough body fat/muscle in the thoracic cage).  There is not a lot one can do for this other than try to increase weight- which may be difficult given your other health problems.  As usual- we recommend you control what you can ( no smoking or vaping, proper diet, exercise ( which could be challenging given your being wheelchair bound< vaccinations).  Perhaps you could do exercise bands?23 hours ago
Albert1935

Albert1935

Hello everyone. I am new here. Iโ€™m taking care of my best friend who is going to be 90 this year. He recently is using a BiPAP machine. He has severe COPD. I love him so much and Iโ€™m doing my best to take care of him.. it hurts to see him struggle we use nebulizers he cannot walk like he used to. Thanks for letting me vent.

3 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.