Bill Clark - Community Manager

Bill Clark - Community ManagerWe need your help to answer a few VERY short questions. Our Community on COPD360Social has for a long time been expressing their concerns about the side effects of the various drugs they are prescribed by their doctors. Because a person with COPD often has a treatment team of two or more doctors, there is also a concern in the community as to how any new drugs will interact with drugs that are already
being taken.

The COPD Foundation along with
some of our partners are trying to understand how patients obtain information on the drugs they are prescribed and the effect they will have on their COPD treatment. We need your help to answer a few VERY short questions. It will just take a few minutes and your response will be valuable in helping us gain insight into a very real problem.

Please click on the link below to answer the very brief survey; and as always thanks for helping to make a difference!

https://www.surveymonkey.com/r/L8PZQ9B

2 weeks ago

lynn65

lynn65answered the question Night Oxygen for sleep

I really did not like the idea of starting oxygen either but once I learned i have hypoxemia it can cause damage to the heart if not treated will lead to hypoxia I decided to use it..

1 hour ago

Kaya

Kaya

โ˜บ Glad you are following me. You
Give short knowledgeable answers with helpful information.  Please also consider becoming my friend. Kaya โ˜บ

3 hours ago

Ben A

Ben A

At long last, I have a diagnosis (kind of) for my foot and hand.  Non-rheumatoid arthritis.  That narrows it down to about 99 other types of arthritis, but at least it is recognized that yes, there is something wrong with my foot and hand (and that it is categorically NOT psycho-somatic, as my idiot ex-GP informed me), and yes, that it is very painful.  I'm being put on monitored high doses of NSAIDs for now and I'll see the rheumatologist again in 6 - 8 weeks, at which point he wants to do an extensive blood panel to try to narrow the diagnosis further.


That's progress.  Not a solution, but a helluva lot closer than anyone else has been able to come up with.


Happy weekend!

4 hours ago

Kaya

Kaya

๐Ÿ˜’ Thanks for answering my friend
Request. Love your graphics Jimmy S ! Do you do your own artwork or
Have you found a way to combine
Photo & verse off internet?โ˜บKaya

5 hours ago

LandB55

LandB55answered the question Medicare - worse than ever campaign for COPD

Well Mike Hess RRT I was trying to view your comment to me earlier and when I clicked view it comes up giving a message copdfoundation.org not found return to home page. Its crazy . So let me tell you. I do have Lonhala it was approved i didn't know …

6 hours ago

Sylph

Sylphanswered the question Diagnosis-result of my extra large lungs-Does this seem correct?

Have you ever heard of Marfan Syndrome? itโ€™s a genetic connective tissue disorder that affect skin, organs, blood vessels etc... a great number of people who are affected do not know they have this disorder. If lungs are affected they get hyperinflated …

6 hours ago

Sylph

Sylphanswered the question Anyone Know, Where is the Best Treatment Place for COPD?

Thank you so much for responding

7 hours ago

Kaya

Kaya

๐Ÿ˜‰  Have inserted a photo of one of
My pictures I'm drawing down below several posts. Great day! Kaya

8 hours ago

netmouse

netmouseanswered the question Medicare - worse than ever campaign for COPD

I'm not sure what is going on with YouTube. I didn't see any comments that some mentioned they added. I added a comment. I logged out and went back in and don't see my own comment. I signed back on and now see my own comment. Weird. My comment - but may …

9 hours ago

joney

joney

not to well today did not sleep well hopefully I will feel better later

9 hours ago

Jimmy S

Jimmy Sโ€œWelcome to Friday. In preparation for takeoff, please ensure all
negative attitudes are properly stowed. On behalf of your captain, Jimmy, welcome aboard. I expect sunshine and good attitudes
today for our trip. Enjoy the ride.โ€œ๐Ÿ˜ŽI hope everyone got up this morning is doing better then the day before. It does not matter how slowly you go as long as you do not stop. If you feel like giving up, just look back on how far you are already. Focus on your goal. Donโ€™t look in any direction but ahead. My goal this week was to walk 750 steps in one outing. Guess what? I went 863 steps. You have remember: Focus on your goal. Donโ€™t look in any direction but ahead.

10 hours ago

Kristen Willard

Kristen WillardHappy Fluffy Friday from smooshface central!

10 hours ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain This was posted on twitter by AARC with the caption
"We cannot stress the importance of patient education enough!"

11 hours ago

2cents

2centsanswered the question Medicare Oxygen Coverage

I am only in my 2nd year of coverage for oxygen equipment. I have Medicare. I can only tell you that I am not expecting to see rental charges in years 4 or 5. I don't think the contract changes from one DME to another, so if the rental charge is 0 after …

11 hours ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Medicare - worse than ever campaign for COPD

I'm confused (and sarcastic), was that a video about COPD or lung cancer screening. Not once did they mention spriometry and getting screened for COPD.

12 hours ago

Stephanie Williams, RRT

Stephanie Williams, RRTanswered the question Medicare - worse than ever campaign for COPD

I put a comment on their YouTube page, as well. Just let them know that they are missing a real opportunity to provide information about an illness that needs some attention. Thanks for posting the link, netmouse

12 hours ago

Kenny A.

Kenny A.

Dad23
Thank you for your service as a firefighter I commend you for your time and service. I will try to do my best I am not the best writer
My medications are Symbicort and Spiriva and I exercise as much as I can but it's not easy , the simplest task like taking out trash or going down to the basement kick my butt. Of course taking the dog out well that can be a task in its self. I have to go but I so appreciate your insight and concern and look forward to chatting with you again

12 hours ago

Kaya

Kayaanswered the question Following & Followers

Thanks to all of you who have asked me to be their friend. I'm learning how to request a friend now. Hope I can make a few new ones I've enjoyed reading posts from. Need to charge phone first so will be trying much later. Kaya

12 hours ago

Kaya

Kaya

โ˜บ Hi Loukat! Would like to be your
Friend. Love your butterfly! I'm still
New to this website and you're my first friend request.  I live in NC and
Still see butterflies passing through
On way to warmer climates. โ˜บ

13 hours ago

Kenny A.

Kenny A.

Living with COPD has changed my life tremendously. I am now disabled after years of welding. I can no longer do what I did and everything takes much longer to do. It is hard to believe that in the last 2 years how my health has failed , no job , friends are gone , life style completely different , overall fatigue is aweful but I will not give up. I am stubborn and just can't get over the fact this is the way my life has ended up , I wonder do folks with this get as angry as I do. 

13 hours ago

  • NewestOldestClick to View All Comments10 comment(s)
  • Cape CodderWelcome Kenny A.โ€‹ โ€” My anger is toward Big Tobacco which was so successful at getting me โ€” and keeping me โ€” addicted to nicotine for 35 years, and the vast, mind boggling wealth they accumulated as my (our) expense. 

    If I let it, the anger could eat me alive, so I try my best to leave the anger aside and, instead, focus positively on what I can do, in the here and now, to maintain and improve my life and my health. Itโ€™s often one step forward and two steps back, but Iโ€™m still upright and moving, and thatโ€™s what adds meaning to my days.  

    Best of luck to you!8 hours ago
  • loukatHi KennyA., I can't say it's anger that I feel but rather frustration if anything as the mind wants and says one thing but the body immediately shuts down and does not co-operate.  I have learned to pace myself and recognize that any bit that one does is an achievement so the frustration of not being able to do something that you used to isn't as prevalent.  I just do what I can when I feel I can and sometimes being stubborn I do push myself (character flaw lol) but then I know when I do I'll end up having to rest a whole day afterward. which I know will happen.  So for me it's all about pacing and if I find my mind is going to the 'frustration place' I change what ever it is I am doing/not doing and do something to snap myself out of it.  I am fortunate to be blessed with a couple of awesome friends who have helped me along my journey.   It's most important to keep the 'socialization' component active.  Unfortunately, I am unable to participate in an 'exercise' regime as of yet as I'm dealing with post surgery heart complications so no exertion till that gets resolved.  Take each day as it is and do what you can when you have a good moment or two (or three).  Cheers, Loukat๐Ÿ˜บ4 hours ago
  • cooker137Kenny A I am so sorry you are so angry! I find it is better to try to be positive about something every day even if it is a bad day I try to find something positive to think about. I also try to go out at least once a week with someone just to get out of the house. I do go to work everyday and I work from home on Saturdays at my 2nd job, so sometimes I am not really up to doing anything else but resting. This site has helped to put things in perspective for me. I just recently started to post and join in some of the conversations.  Good luck and Ihope you can feel better soon. There are some awesome people on this site that will lift your spirits and help to carry you along especially when you are down3 hours ago
Mike Hess, RRT (State Captain, Michigan)

Mike Hess, RRT (State Captain, Michigan)answered the question Medicare - worse than ever campaign for COPD

Yikes. That's pretty bad. I couldn't figure out how to leave a comment on the blog page itself (another yikes), but I did go ahead and leave a comment on the YouTube video embedded on that page. Fortunately (?) it only had about 150 views, so that …

13 hours ago

LandB55

LandB55

Good day y'all, 
We have all made it another week . What a Great thing that is. Hello to all the new comers here at 360social
you now are part of a Great family of caring,  compassionate,  and very knowledgeable people that can help you with the daily struggles of COPD , as well as advice on living a very great and normal life.  Peace and Love to all as we journey through life together one amazing day at a time. 
Lorrie ๐Ÿ˜Š

14 hours ago

netmouse

netmouseasked the question: Medicare coverage for COPD services

I thought I'd share 3 links that explain how Medicare pays for your COPD services. If you have traditional Medicare that pays 80%, a supplemental policy would cover the 20%. I was shocked how many do not have the supplemental policy by the Kaiser website …

15 hours ago

netmouse

netmouseanswered the question Medicare - worse than ever campaign for COPD

Here is the link: https://www.medicare.gov/blog/copd-knowing-more-ca...

16 hours ago

netmouse

netmouseasked the question: Medicare - worse than ever campaign for COPD

This will make your blood boil !!! I found this video of Medicare acting as a champion for COPD Awareness Month. This is the worse case of tone deafness ever. Totally misses saving millions of lives. How do you spell "totally ineffective"? They say how …

16 hours ago

sonichawk24

sonichawk24

Iโ€™m not doing well. This is almost like not living at all!!! Just 5 months ago I was running like 7 miles every other day, training for a marathon, then I got sick and my lungs have been jacked up ever since. My Dr. diagnosed me with COPD. Iโ€™ve been on symbicort and that was really working for like the first 2 weeks and then it seemed to hit a wall. I seem to be regressing now. Iโ€™m out of breath anytime I just get up and walk!!! VERY FRUSTRATING!!! Iโ€™m also getting weird pains in my back, on my sides and yes, in my chest. Seems to move constantly. Seems to be where I believe my lungs to be, but could be heart? Iโ€™m seeing a pulmonologist 9/11/2019, so weโ€™ll see? Like I said, I feel dead already!!! Iโ€™ve always been a very active person and this is absolutely unacceptable...God help me!!!

18 hours ago

  • NewestOldest
  • Jean IA State CaptainWe can all sympathize with your feelings, because we've all been there.  It can be very frustrating.  I sounds like you need to see a pulmonologist for a complete diagnostic workup to get a good diagnosis.  Your doc may have been right, but the only way to know whether you have COPD or not is with a breathing test, so that's the first thing your new doc should do.  You may also have a six minute walk test, some blood work, perhaps a CT scan.  Be sure you get copies of all test results and don;t leave the office until you understand everything clearly.  In the meantime, I think you need to see your doc because my guess is that you're having an exacerbation and you need to be sure it doesn't get worse than it is.16 hours ago
  • clipper (Debbie) - NJ State Captain Normally COPD doesn't have pain like you are describing, like Jean said you might be having an exacerbation which is usually what gets people to the doctor and their diagnosis. Follow Jean's advice and once your pulmonologist gets you on a good treatment plan you will feel better and most likely will be back to running.  Once you get your tests and a proper diagnosis from the pulmonologist, talk to them about exercise, see what they think about 7 miles every other day and how you might get back to that level.  Until then you might want to think about doing some easy breathing stretching exercises to calm your breathing and move your muscles a little bit. 14 hours ago
DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainGood morning! Happy Fluffy Friday! Here's your daily chuckle, courtesy of my sister Lori! ๐Ÿ’ฉ

20 hours ago

lynn31119

lynn31119answered the question Medicare Oxygen Coverage

I also have medicare. I was never told that, the provider broke everything down for me. 20% of medicare doesn't cover seems to be right.

1 day ago

Panda559

Panda559

I talked to my doc and she said i can take 2 puffs a day twice a day. And i also got the flu shot and the pnemonia shot too. I had he give me the shots in the same arm. Just wondering is it normal to be sore under my arm and down my armpit area and little lower than that.? And its warm to the touch. Im gonna stop by and ask the doctor after i get off work just to make sure..

1 day ago

Jimmy S

Jimmy SDear Lord, you know us so well. You created us. You know the number of
hairs on our head, and you even know the thoughts conceived in our heart
before we ever vocalize them. You've told us to come to you and ask for
every need of life. You are Jehovah-Rapha, the God who heals, and you
have the final word on our destiny, the numbers of years weโ€™ve live and
serve you on earth.Weโ€™re coming to you today as your children, longing
to hear from you and asking for your divine healing. There's so much we
don't understand about life. But we do know that with one touch, one
word, you can make us whole. Please forgive us of our sins, cleanse us
of our unrighteousness, and begin your healing from the inside out.We
absolutely believe you have the power to heal. You demonstrated that on
earth, and you still heal in miraculous ways today. Even when our faith
is weak, you say it is enough, and our love for you is strong. And we
know you already hold our heart and life in your hands. It's up to you.
If we can bring you more glory through healing, then that's what we ask
for. That's what we desire.But if your answer is no, or not now, we know
that your grace is sufficient for us. Ultimately, we want your will to
be our will. We look forward to spending an eternity with you. But Lord,
if you have planned still more for us to do here on this earth, we not
only need and want your physical healing, Lord, but a thorough,
deep-down cleansing and strengtheningโ€”a whole-hearted renewal of all
that we are. Because all that we are is yours. Use this trial to
strengthen us from a "what-if" faith to a "no-matter-what" faith. And no
matter what, we choose to honor you and give you glory. In Jesus's
name, Amen.

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

Haven't been on much, rough days at CVS, wore my new Bifocals yesterday for the first full day, not unhappy, just dizzy and fuzzy and quite a strange headache to deal with, today was day 2 no better than yesterday, just had the headache start earlier. Less than 2 weeks for my Pulmonologist visit. My son bought me the new Samsung Galaxy s10 for my Birthday so I was setting that up all afternoon yesterday. Hope all is well? Love you guys Bill66

1 day ago

cooker137

cooker137

Can anyone answer me why I can walk an hour at the gym on the treadmill but cannot walk from my car to my house carrying a bag of groceries without struggling to breathe?

1 day ago

Shelly from Tennessee

Shelly from Tennessee

Having a bad day of breathing

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question Tests to diagnosis

The breathing test you took is definitive for COPD. Understand COPD is an umbrella term that includes emphysema, chronic bronchitis, sometimes asthma and sometimes bronchiectasis. Very few of us have just one of the other. Most of us have elements of …

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainanswered the question Unable to get a deep breath

I have COPD and severe persistent asthma. That sawdust would cause me to have major asthma attacks! Working around sawdust, he really needs to wear a quality mask!!!

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question Follow-up appointment

You can do something about it meaningfully right now. Quit and I suspect you will see significant improvement over time. Once you get your issues straightened out and know what they really are and how you and your doc are going to address them, you …

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question Medicare Oxygen Coverage

I have not had a similar experience, but I certainly encourage you to call Medicare and complain. Persist until you find someone who first knows the rules and second can actually do something. It may take a while to find the right person, but keep asking …

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question What to Ask the Doctor?

As him what he thinks of the meds you're on and the treatment plan your old pulmo had for you. You can ask him what he knows about new meds and treatments, research that's going on, what he sees in your future. Ask him what you can do to help yourself …

1 day ago

Kip

Kipasked the question: What to Ask the Doctor?

I am about to present to a new pulmonologist (my old one has just retired) and I'm looking for tips as to what to ask the new doctor about COPD. Are there new treatments, meds, procedures that I should inquire about? Thanks for your help.

1 day ago

aliingreenvalley

aliingreenvalleyasked the question: Medicare Oxygen Coverage

I am hoping someone has current Medicare information and can help me answer this question. When I first became oxygen dependent I paid a copayment monthly for my stationary and portable concentrators for the first 3 years and was told there would be no …

1 day ago

Gramma Cheri

Gramma Cherianswered the question Has anyone on this forum had the Zephyr valves installed?

I had 3 Zephyr valves placed 5 months ago. I am very pleased with results.

1 day ago

netmouse

netmouseasked the question: Follow-up appointment

I had my second appt with my pulmo doctor. I feel more comfortable with him now, calmer, took time for my questions. He takes good notes apparently, knew my concerns from last time. A reviewer wrote he is the doctor others go to for complex cases. My …

1 day ago

Anomaly

Anomaly

Newcomer... Have had several ongoing symptoms attributable to COPD, some going back as far as 15-25 years... No formal diagnosis as of yet, other than chronic bronchitis and asthma, possibly allergic asthma. Looking for people who know the difference between asthma and COPD, as some can have both.

1 day ago

  • NewestOldestClick to View All Comments7 comment(s)
  • Maverick2Relax, if you understood the disease the symptoms are quite manageable. First thing to consider is your Age. if it less than 25 asthma is most probable. if you are beyond 25 it can be COPD or COPD bronchitis-asthma overlap.

    your high eosinophil count and high sensitivity to smells suggest that you have asthma.
    every day cough and sputum indicate chronic bronchitis type of copd. thus it is probably an Asthma copd overlap.
    your inconsistent sleep patterns and difficulty falling asleep / staying asleep are also effects of copd. copd and asthma have no established link to the vision problem. check for diabetes also

    Keep track of trigger of your attack and be prepared for such eventuality.

    talk to a pulmonologist. most pulmonologists are reticent at first as they don't want to spook the patient Once they aware you are trying to understand they are happy to share their knowledge.
    1 day ago
  • AnomalyAll the info is appreciated. I am 43, and currently not in a position to set up a new pulmonologist, as I was in a broadside car accident and sort of stuck in the middle of dealing with injuries from that. Hopefully I will be settling the claim soon and I can get something rolling. To be truthful, I am tired of living like this. As someone else posted on here, I feel like my life is over already. I can't go anywhere or do anything because of smokers doing what they damned well please. I drive Uber just to have money to eat (about all it affords after expenses), and must screen my passengers because of my condition -- you should see some of the a**holio responses I get from some of these entitled jerks. I have to have friends do my grocery shopping for me. This is not living. 8 hours ago
  • Kandy State Captain of South Dakota That is what I came up on Tuesday went to my allergist to sign papers for renewed Xolair shots. They wanted me to fill out questioner about asthma.. I said I have 4 lung diseases how do I know which one is asthma.?  I didn't have to fill out the questions.   After seen my pulmo  1 hour ago
islandguy

islandguy

I have a sister that has COPD and does way to much for her family, shes been in and out of hospitals and is now on oxygen.  I am new at learning about what this disease does to a person and would like to know more about what I can do to help her out.

1 day ago

edpe77

edpe77I couldn't get the back page to load. Essentially it had the logo and:



"The COPD Foundation offers resources such as COPD360social, an online community where you can connect with patients, caregivers and healthcare providers and ask questions, share your experiences and receive and provide support."


ed, trying to spread the word

1 day ago

Ben A

Ben A

I just got some good news (for a change)!


Back
in early July, I finally convinced my useless GP (who is now being
replaced) to get me a referral to a rheumatologist to try to figure out
what is happening with this painful foot (which has prevented me from
exercising for almost eight months now). I immediately called to
schedule an appointment but discovered that the soonest opening was Oct.
29, more than three and a half months in the future. On Tuesday of
this week, I got a call from them saying that they'd had a cancellation
and that they could fit me in on Oct. 4. Not a big improvement, but
I'll take what I can get.

Twenty minutes ago, I got another call from
their office, reporting another cancellation and asking if I was
interested. I snapped it up and I FINALLY GET TO SEE A RHEUMATOLOGIST
TOMORROW!

Keep your fingers crossed for me. I am REALLY feeling
the effects on my COPD of no exercise for such a long time, and I hope
that this specialist can pin down what's wrong with the foot and come up
with a treatment plan that will get me back on both feet with at least
minimal pain.

1 day ago

edpe77

edpe77

Great, I gave my hositital staff a small bag of candy, and thank you note. The back page is below.
ed

1 day ago

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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.