Bill Clark - Community Manager

Bill Clark - Community ManagerWe want to hear from you! Tell
us what you are thinking about aerosol devices and whether you are still using
them during the COVID-19 pandemic.



This new survey from the COPD
Foundation Nebulizer Consortium (CNC) will help us develop new research
projects and educational programs that most effectively meet your needs.



Patients, caregivers and health
care professionals are all invited to participate:


 https://www.surveymonkey.com/r/3QVJWXL


3 hours ago

Kristen Willard

Kristen Willard

Hello everyone! On March 1, 2021, the Foundation is kicking off a new educational calendar, bringing you blogs, games, interviews and more!


Every month, we will highlight a new topic or theme. During the course of the year, youโ€™ll see us focus on a variety of topics, such as pulmonary rehabilitation, COPD 101, exacerbations or flare ups, and more!

Click the link below to view a short video from Kristen and Stephanie that explains all about the new calendar along with all the topics that will be covered.

https://www.youtube.com/watch?v=587DYwjxNws

2 days ago

gcd1477

gcd1477asked the question: Did you Know? โ€“ Exercise Videos

The videos are excellent. I watched both upper and lower body. I am just starting an exercise program at home so these were especially helpful. Also browsed the blog that was mentioned where I found a video on using bands. This site has so many...

56 minutes ago

gcd1477

gcd1477

Hi all.  I'm scheduled to received the one dose J&J vaccine on Saturday.  Has anyone received it or heard any feedback regarding side effects.  I'm kind of nervous about this.  Any thoughts will be greatly appreciated.

1 hour ago

Mary ORourke

Mary ORourkeanswered the question Did anyone's copd happen suddenly?

i was in denual of my COOD. my pulmonologist had it on my chart but fudn't duscuss it eith me fir 4 Years!

1 hour ago

Bullet

Bulletanswered the question Did anyone's copd happen suddenly?

I quit smoking in November 4 years ago. and in June of the following year I was fine. Within three weeks in July I went into stage 2 COPD I was diagnosed with it in the following months.. Anytime I exerted myself , walking , cutting grass, lifting or …

1 hour ago

Mary ORourke

Mary ORourke

my Nira Eliota is making my nose run profuely today!  

2 hours ago

Bullet

Bulletanswered the question Are meds given for mild copd

I had Mild COPD for 30 years. When I became Stage 2 Moderate COPD, I had to ask for a medicine from my family doctor as nothing was ever offered to me. It took a long time to see the pulmonologist who recommended the same medicine ( inhaler) I got from …

2 hours ago

Bullet

Bulletanswered the question Can Emphysema just show up?

I can understand you completely. Your story is similar to mine on the time breathlessness came on with, and no one believes me either. I was diagnosed with COPD 30 years ago by my family doctor who put down that I had MILD COPD (Stage one) on my chart I …

2 hours ago

Stephanie Williams, RRT

Stephanie Williams, RRTasked the question: ***ACTIVITY BINGO***

Ladies and Gentlemen! Are you looking for ways to become or stay active? Are you also a little competitive? If the answer to either of those questions is "yes", then I have just the thing for you! (Drumroll, please!) ACTIVITY BINGO!!! We all know …

2 hours ago

Community Announcements

Community Announcementsadded a new article Did you Know? โ€“ Exercise Videos

This post was written by Jane Martin, BA, CRT


The COPD Foundation website and Pocket Consultant Guide app have exercise videos you can use at home.

Spring is coming and pretty soon weโ€™ll be able to open the windows and feel the warmth, sunshine, and energy of a new season. You might be thinking, "Energy? Really? I have enough trouble getting...

3 hours ago

Christina H RRT

Christina H RRTanswered the question Check in - What is Rare Disease Day?

Great post Jane! Being diagnosed with a rare disease can feel overwhelming and isolating for so many. Thanks for shedding a light on some specific diagnoses that need our continued support.

5 hours ago

Christina H RRT

Christina H RRTanswered the question newly diagnosed /stage 2

Hi becky8 Welcome to the community. I agree with the above feedback. I does seem a though your doctors are being thorough. Take a look at the COPDF website as well. There is a lot of great information in the "Learn More" page and even a page for …

5 hours ago

edpe77

edpe77

We're in crisis mode over here. My cleaning lady - aka my daughter - broke her foot this weekend. Dr said no weight on it. Just when I bought her a new battery powered vacuum too! My sister gave me mom's electric wheel chair, which my son is delivering tomorrow. Good luck on her walls, mom was an excellent driver and never hit a wall.
So now I'm in need of light cleaning, are there any services covered by insurance for "senior" assistance?  //ed

16 hours ago

Caroline

Carolineanswered the question newly diagnosed /stage 2

From reading your post it seems that your doctors are doing the right thing and trying to rule out all causes of shortness of breath. Your Fev1 in the upper 50 does suggest mild to moderate disease. Being anxious is part of finding out that you have a …

17 hours ago

Jean IA State Captain

Jean IA State Captainanswered the question newly diagnosed /stage 2

Becky, you say you were diagnosed with COPD, which is obstructionary, but then you mention "additional restrictive disease". Where did that come from? It is possible to have both obstructive and restrictive disease, though it's not common and you don't …

17 hours ago

Jean IA State Captain

Jean IA State Captainanswered the question Can Emphysema just show up?

You haven't said that you've been diagnosed with COPD; you've only report "emphasmic background changes" in a CT scan. I think it probably read "emphysemic changes". A CT scan is not a definitive diagnostic tool for COPD; that's reserved for a Pulmonary …

17 hours ago

Mikahya

Mikahya

Sad and scared. Im only 37 and cant believe I have this 

18 hours ago

  • NewestOldest
  • Jean IA State CaptainFirst, how were you diagnosed?  Have you had a breathing test?  There are two, spirometry, and a pulmonary function test (spirometry is part of it); either if definitive for COPD.  Unless you've had the test, you really don't know.  Are you being seen by a pulmonologist?  If not, you need to find one.  Your Primary Care doc is undoubtedly a nice person, but they usually don't know enough about COPD to adequately treat it or test for the right things.  One of the things you should be tested for is Alpha-1 Antitrypsin Deficiency.  It's a genetic condition that can affect both liver and lungs and is important for you to know whether you have it.  The test is a simple blood stick, but even some pulmonologists don't think about testing for it, so if it's not offered, you need to ask.


    All that said, life with COPD can be very productive, satisfying and fun.  It's not a death sentence.  It does take some work to manage and control, but you can learn to do that.  Daily, exercise, no smoking, attention to weight and diet are all important in helping us to do the most we can with what we have.  I've had COPD since 1985 I'm sure, and probably before that.  I really only started paying attention in 2003, and I've had a really good run.  I'm only 76, and I think I've got at least a good 10 more years and maybe more than that. 


    I've given you some ideas of things to do.  Knowledge is power, so get to learning and finding some good information.  Don't waste your time feeling sorry for yourself.  There are a lot of other, way more positive, things to be doing for yourself.  17 hours ago
  • Christina H RRTHi Mikahyaโ€‹. I can imagine that you are overwhelmed and worried with your new diagnosis. However, Jean IA State Captainโ€‹ made some really good points.  Definitely take some time to review some of the content on the COPDF website. (There is even a topic for "newly diagnosed.") It will give you a place to start when it comes to learning more about COPD. This community is here for you. There are so many that have wonderful knowledge of this diagnosis and can give you great tips on how to manage the symptoms. Feel free to ask questions as they come up. Sending you positive vibes as you navigate your next steps. 5 hours ago
edpe77

edpe77answered the question Can Emphysema just show up?

Cathym o, welcome to 360. First off you didn't just get COPD! It is a very slow progressive condition. Exercise, eating healthy etc help to stabilize your body. What possibly happened to you is an anxiety attack - common for all of us. For me, having to …

18 hours ago

Cathymo

Cathymoanswered the question Can Emphysema just show up?

I'm just so confused how I got sick so quick. I have thought of eeverything , did I catch something to cause the lung problem? Was it the antibiotic I took? Was it environment? I know I smoked, but honestly had no symptoms . People always remarked how …

19 hours ago

becky8

becky8asked the question: newly diagnosed /stage 2

Hi! I am really just so overwhelmed with this diagnosis. I am 58 years old, never smoked, parents never smoked, but I was around a lot of second hand smoke as a child while living in the Middle East. I was just diagnosed with stage 2 COPD after two …

20 hours ago

Cathymo

Cathymoanswered the question Can Emphysema just show up?

I know. Bit it is really scarey to think I was fine in October. It makes no sense to me at all. I don't understand all the body aches either. They have put me thru a lot of test , I can't find anything that says emphysema could cause these aches. I have …

20 hours ago

JeanO53

JeanO53answered the question Can Emphysema just show up?

Hi Cathymo - I know that hearing you might have a chronic condition can be really scary. It was for most of us when we were first diagnosed. And it can really be overwhelming. ... In some ways, learning how to manage this is like learning all of …

20 hours ago

Cathymo

Cathymoanswered the question Can Emphysema just show up?

Staying positive is so hard. I've done nothing but cry. I am just having such a hard time.

20 hours ago

Ms.Whylene

Ms.Whyleneanswered the question How is a stress test

My answer is No! Not at this time for reasons I will not discuss here.

21 hours ago

Cathymo

Cathymoanswered the question Can Emphysema just show up?

I am beyond terrified. I am depressed as well. I was so active! At night I have trouble breathing and it scares me. I have started having all kinds of muscle aches, especially in my shoulders and ribs. I am just in awe! I go to the lung doctor on the 15.

22 hours ago

das23

das23answered the question Can Emphysema just show up?

Hi Cathymo....You are going to have to see a pulmonologist and get a PFT and more before you really know if you have COPD. Try not to be afraid--many of us here are living healthy lives with all stages of COPD. Hang in there and see a pulmo.

23 hours ago

Norso

Norsoanswered the question Can Emphysema just show up?

I think it's because it's a progressive condition that it feels like it just showed up. It takes a long time for symptom to manifest. For example if I hadn't had 2 chest infections in quick succession and asked Dr about I'd never have had a chest x-ray …

23 hours ago

Cathymo

Cathymoasked the question: Can Emphysema just show up?

Back in October I was fine. Horse back riding, camping, atvjing, remodeling my house. Had a seizure in November for no apparent reason. I started having weird symptoms. Dr said anxiety. .. finally after having stomach issues that felt like gallbladder …

23 hours ago

Norso

Norsoanswered the question Life expectancy

Thought I'd look it up. In uk it's 79-81. In USA it's 78.4. There's plenty of people who have exceeded it and plenty who haven't reached it... Just as with COPD. My Initial reaction with COPD after googling was "I might only have 5 years" and it did …

23 hours ago

Norso

Norsoanswered the question Life expectancy

can't say much more to what has already been said, and probably better, by others... But I felt like that when sort of diagnosed and read the 5 years thing online. But against that there are loads of others, including many on here, who have survived much …

23 hours ago

Norso

Norso

Good evening, I'm doing okay but noticed that when I breath into a mini peak flow device it is less in morning than in evening. Is that what usually happens?

23 hours ago

muddleaged

muddleagedanswered the question COPD and Covid Vaccine

I had both Moderna shots. I made sure to exercise my arm a lot and I never had a sore arm. First dose went well, with no side effects. Second dose was a doozy. About 8 hours after the shot I had a fever (100.8º), joint pain, exhaustion, rapid pulse (120 …

23 hours ago

rbrock

rbrockanswered the question Throat problems after being intubated.

I had surgery for thyroid cancer about a year and a half ago. Since waking up in the recovery room, I have had copious amounts of mucous which I have to constantly clear out of my throat. It's gross! And drives my wife nuts (I don't blame her). I have …

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainanswered the question Check in - What is Rare Disease Day?

Thank you for educating us, Jane. The people who are struggling with rare diseases deserve our recognition and support!

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainanswered the question Check in - What is Rare Disease Day?

Thank you for educating us, Jane. The people who are struggling with rare diseases deserve our recognition and support!

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainanswered the question Check in - What is Rare Disease Day?

Thank you for educating us, Jane. The people who are struggling with rare diseases deserve our recognition and support!

1 day ago

Stephanie Williams, RRT

Stephanie Williams, RRTHere's my contribution to Tuneful Tuesday! Truly an oldie, but a goodie!
https://youtu.be/SoaAb5MnKtY

1 day ago

Dbaudit

Dbauditanswered the question COPD and Covid Vaccine

I've had both Pfizer vaccinations. Aside from a sore arm and being very sleepy the day of the shot, I had no reaction. They ask that you maintain your covid safety protocols for 3 weeks after the second shot. My husband was part of the Pfizer trials. …

1 day ago

Stephanie Williams, RRT

Stephanie Williams, RRTasked the question: A Coronavirus Update for the COPD Community

For our new members, we have a section dedicated to COVID-19 information. There is a lot of helpful information here: interviews with doctors, Q&A sessions, and blog posts. If you have questions, check out the Coronavirus Information page....

1 day ago

Scorpio

Scorpioanswered the question Copd circulation or could it be lupus

The symptoms you are describing have nothing to do with COPD. I suggest you make an appointment with your doctor and describe this to them.

1 day ago

PDeNardo, COPD Coach

PDeNardo, COPD Coachcommented onDid you Know? โ€“ Exercise Videos

 I am a COPD patient of 21 years. I just finished the Foundation exercises and found them excellent. I know if I do these on a regular basis, it will be really helpful for me. Exciting!! Oh - I wore my oxygen with no trouble at all....

1 day ago

das23

das23

So 24 hours after my first COVID vaccine shot---NO side effects---Late last night my shoulder-injection spot-got a tad bit sore when raised my arm up over my head. That's it!! Get the vaccine--Stay Safe!!๐Ÿ‘๐Ÿ‘โœŒ

1 day ago

Bret99

Bret99answered the question Check in - What is Rare Disease Day?

Great post Jane! It's surprising to learn that there are more than 6,000 rare diseases. For those living with these diseases, it must be a constant struggle. I am sure it helps for people affected by rare diseases to know that others are listening and …

1 day ago

Ken Benson-Ca. state captain

Ken Benson-Ca. state captainSomething international to kick off Tuneful Tuesday.
Not to be confused with the song with the same title by peter, Paul and Mary.

://www.youtube.com/watch?v=84CPo4bVkMk

1 day ago

bugalugs

bugalugs

Hi recently diagnosed with copd and feeling pretty scared. Having suffered with severe asthma as a kid, not being able to breathe is terrifying. Also have sleep apnea, use a c-pap machine. Also overweight which worries me more now too

1 day ago

Ms DV

Ms DVanswered the question Life expectancy

I have lived with COPD for over 20 yrs. Worked most of them in a school system in special ed until I retired at 65yrs. Loved my life of work and family.

1 day ago

Jim Martin

Jim Martin

Wanted to let you all know that my Dad is doing good so far with the C-PAP. He is breathing a lot easier at night. It is hard to watch my Dad go through this, knowing that the Asthmatic COPD will eventually take him. It bothers me some. What I have done is to keep in contact with Dad every so often to see how he is doing. 

1 day ago

Kristen Willard

Kristen Willardanswered the question Check in - What is Rare Disease Day?

Thank you for this reminder about Rare Disease Day, Jane! Having a rare disease must be isolating at times - and that is something we can all relate to for sure. For anyone who faces feeling like they can't get the right diagnosis, that people do not …

1 day ago

Community Announcements

Community Announcements

New article in the COPD Digest - Did you Know? โ€“ Exercise Videos

This post was written by Jane Martin, BA, CRT


The COPD Foundation website and Pocket Consultant Guide app have exercise videos you can use at home.

Spring is coming and pretty soon we’ll be able to open the windows and feel the warmth, sunshine, and energy of a new season. You might be thinking, "Energy? Really? I have enough trouble getting to the bathroom, let alone 'feel energy!'"

For sure, it’s been a long, hard winter. But that’s all the more reason to do your best to get up and move. And we can help you do that. The COPD Foundation has seven great exercise videos you can get to easily, any time you want. They all have good, solid, practical information, and they will help you get you moving – safely and effectively. For those of you who already exercise regularly, these videos may help add variety to your routine and work some new muscles.

Read More

1 day ago


COPD360social posts are monitored by Vice President of Patient Experience and COPD360social Community Manager, Bill Clark, as well as staff Respiratory Therapists.


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. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.