Bill Clark - Community Manager

Bill Clark - Community Manager

For those looking for the blogs, we have added a shortcut in the blue COPD360 Social menu button on the top left

1 day ago

Whylene McCray

Whylene McCraycommented onPlaying with Fire – Staying Safe Using Home Oxygen Therapy

 Sorry folks, there is some third party involvement (possible fraud) I am unable to reach my provider, just this third party interference.....

13 minutes ago

Bill Clark - Community Manager

Bill Clark - Community Manageradded a new article National Immunization Awareness Month

Do you talk to your doctor every year about receiving your annual flu shot? How about asking your doctor if a pneumococcal pneumonia vaccine is right for you? According to the Centers for Disease Control, an estimated 40,000 to 50,000 adults in the United States die from vaccine preventable infectious diseases every year.

For patients with COPD, asthma, older adults, and those with weakened immune systems, it is especially important to protect themselves with annual vaccinations. For those living with COPD,...

39 minutes ago

Barb47

Barb47answered the question Do you know your GOLD stage?

My first pulmonologist did not share my GOLD score. He just said it was "severe". His attitude towards me was discouraging. I asked him to order pulmonary rehab (I had done my own research), and that helped me to see how important Exercise is. The …

47 minutes ago

Tracie Sullivan COPDF Staff

Tracie Sullivan COPDF StaffRecevied another great picture today for the August Photo Challenge, from State Captain Janice Cotton and her family in orange! 

2 hours ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota answered the question Any one heard of - "Cellular therapy."?

Don't those magazines do there home work?? This makes me so very mad also. FDA are trying to shut down these so called cure clinics. LI should but shut down also.

3 hours ago

mpowers

mpowersasked the question: Reme Halo and UV LIght - Air Purification

I just had the condenser coil replaced in my home AC. On the way out the repairman mentioned the Reme Halo (air purification) and UV light (to prevent mold from growing on the coil). Does anyone out there have real world experience with either? They …

3 hours ago

chericaa

chericaacommented onPlaying with Fire – Staying Safe Using Home Oxygen Therapy

  hmmm interesting. As a VA patient on home oxygen for 7 years now I havnt heard of these. would be excellent for the little slip ups . (like lighting a candle the last time we lost power and sitting there in the glow feeling smug until the brain...

11 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Is my O2 a crutch or an aid?

Do you have a pulse oximeter? I guide whether and how much supplemental oxygen I need by checking my pulse oximeter readings. When it reads at or above 90%, I'm fine. When it doesn't consistently read 90% or above, it's time to use the supplemental …

14 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Myths about COPD

The O2 delivery guy says that his patients who are on liquid oxygen do especially well and stay active and he's been delivering to some of them for a VERY long time (decades). Even folks without supplemental oxygen are ADDICTED to O2!

14 hours ago

Caroline

Carolineanswered the question Is my O2 a crutch or an aid?

I agree with clipper. We are all oxygen junkies and I am not sure why your pulmo has prescribed it for 15 hours. The study as I understood it was not set up to study the number of hours that we need oxygen. There has been controversial conclusions by the …

15 hours ago

Kristen Willard

Kristen Willard

18 hours ago

SharonKaye

SharonKaye

On my fifth visit to pulmonary rehab today I had to have oxygen for the first time in my life. It felt like a fail since I am a perfectionist and like to be the best at everything I do. I cried. I feel more positive after processing it but these harsh realities are difficult to navigate sometimes. 

18 hours ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Is my O2 a crutch or an aid?

We all are O2 junkies. It might be more that you feel better with it and you are interpreting that as needing it? I do think another round of PR sounds like a good idea. Maybe part of what you are feeling is being out of condition. Exercise helps you to …

19 hours ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain I do have osteoporosis and osteopenia, maybe because I'm an older woman, maybe because I am an older woman that uses inhaled corticosteroids.  Regardless, one of the many reasons I do weights is for my bones. The other thing that is good for bones is vibration, the kind you get from jumping and stomping. It stimulates the production of osteoblasts. When I stretch before and after my workout, I stomp my feet to get those osteoblasts flowing.  

https://www.health.harvard.edu/staying-healthy/strength-training-builds-more-than-muscles?utm_content=buffer8b6a5&utm_medium=social&utm_source=twitter&utm_campaign=buffer

19 hours ago

MissDaisy

MissDaisyasked the question: Is my O2 a crutch or an aid?

I visited my pul doc in April and he advised that I should use my O2 for at least 15 hours a day as studies show that to be the magic number to prevent heart damage. Whereas I used to take it off in the am and go without unless exercising or housework, …

19 hours ago

edpe77

edpe77answered the question Any one heard of - "Cellular therapy."?

Pleas note, I didn't post it as an endorsement!!! What upsets me is they were advertising in a reputable mag, with probably lots of sufferers! ed

21 hours ago

Tony

Tonyanswered the question Any one heard of - "Cellular therapy."?

Over the years and on several forums, I've read of dozens of people who stated an intent to get stem cell therapy. In each case I or someone else urged that they get back to us with the results. Never heard from one of them. In this age of instant mass …

21 hours ago

Mobal

Mobalanswered the question Any one heard of - "Cellular therapy."?

Definitelywhat I would call a scam. They offer no true scientific proof of their procedureor results. Just another example of the lengths that unscrupulous people willgo to for the sake of money.

22 hours ago

Bill Clark - Community Manager

Bill Clark - Community Manageranswered the question Any one heard of - "Cellular therapy."?

Thanks for not listing the phone number! This is the same stuff they have been peddling and it is still to all appearances as scam. There stats are very misleading and pretty much anecdotal in nature. They might list something like a 9% improvement in …

22 hours ago

edpe77

edpe77asked the question: Any one heard of - "Cellular therapy."?

Just got the Sept Reader's Digest. On page 20, there's an ad by the Lung Health Institute - promoting their "Cellular therapy." Their treatment will "harness your body's natural ability to to promote healing!" They offer great stats on their status. …

1 day ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota answered the question Myths about COPD

When I went on oxygen my friend said, "Aren't you going to get addicted to it?" Well we all are right?

1 day ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota answered the question End stages of COPD

I thought they changed the stages to grades now am I wrong?

1 day ago

Barb47

Barb47answered the question Were you in denial about your COPD diagnosis?

Had a pulmonary function test in 2012. It showed an issue. I didn't follow up. My primary care NP didn't either. At that time my fev1 was 42%, with a recommendation for further testing as " the presence of an accompanied restrictive lung disease is …

1 day ago

dpeter

dpeteranswered the question Spiriva Respimat making me feel bad

I take spiriva respimat and haven’t had any side effects

1 day ago

jeaniusgram

jeaniusgramanswered the question End stages of COPD

donkeys8 every human being is different and every organism deals differently with illnesses .. my mother also wanted to live But besides all her other health issues, she decided to go in peace and relax. its good when this men want „ fight“ and …

1 day ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Myths about COPD

yes, even some doctors think if you have COPD you must be a current or former smoker—wrong! The National Institutes of Heslth estimates 1/4 to 1/6 of COPD patients never smoked, and many do not have Alpha-1, the genetic firm of emphysema either. I am one …

1 day ago

Orlan = State Captain - Indiana

Orlan = State Captain - Indianaanswered the question Myths about COPD

the biggest one is all COPD people were smokers. This is not necessarily try as we know now that a for of COPD called Alpha-1 (antitiprsin) disease is a genetic disease and is totally hereditary. I can't exercise because I have COPD. False, the more …

1 day ago

Well-Wishers  State Captain for PA

Well-Wishers State Captain for PAanswered the question How do you impact a non-compliant patient?

I just want to "thank all of you" for the great food for thought...I hope this helps others, as much as, it will the well-wishers here in PA. I find great minds can defiantly learn and encourage each other.

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Myths about COPD

Please please correct me where I am wrong. It would be great if Stephanie or Jane could monitor this thread for accuracy. Stage 4 is End-Stage. I just saw an article with a 2018 date that still equates all of stage 4 with end stage. Wrong, it’s not that …

1 day ago

Bill Clark - Community Manager

Bill Clark - Community Manageranswered the question Anyone heard of "C2C Solutions, INC.?

They are a company that is approved by Medicare to help patients appeal coverage issues by filing appeals for them.

1 day ago

Whylene McCray

Whylene McCrayasked the question: Anyone heard of "C2C Solutions, INC.?

This is involving my oxygen equipment.. who are these contractors? I have defective equipment and this contractor is in violation? Medicare has always reimbursed patients, when patients submitted claim forms, (medicare mails them to clients,) Who is in …

1 day ago

Stephanie Williams, RRT

Stephanie Williams, RRTanswered the question Can oil painting be harmful to my breathing?

Here is a link that I meant to attach to my earlier post. https://www.craftsy.com/art/article/water-soluble-...

1 day ago

Stephanie Williams, RRT

Stephanie Williams, RRTJust kidding about the previous post :)


Here is my orange selfie.  This is me and my oldest daughter :)
I have loved seeing everyone’s Orange Posts!!

1 day ago

gms

gmsanswered the question Myths about COPD

Here's a big myth.....The numbers on a shoulder carried Portable Oxygen Concentrator, typically 1 thru 4 or 5 indicate the number of liters of oxygen per min you will receive. FALSE. While they do represent the amount of oxygen available, typically in a …

1 day ago

Stephanie Williams, RRT

Stephanie Williams, RRTHey Tracie,
Does this picture work? 😃 

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question Can oil painting be harmful to my breathing?

If they don't bother you now, then probably they aren't going to trigger anything at the moment. You might talk with your doc to see what she has to say, but if the odor or scent doesn't bother you now, I don't think it will trigger anything. You'd know: …

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question COPD Inhalers that need help

If you're doing the Combivent, then when you nebulize albuterol or duoneb, you're getting the same medicine all over again. I'd suggest that you talk with your doc about a long acting beta agonist (LABA) maybe combined with an inhaled steroid (ICS), like …

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question Myths about COPD

Just rest; movement just makes you short of breath and that's not good for you. Don't turn your O2 up above 2 LPM; you'll lose the will to breathe. There's nothing you can do to help yourself. Don't ever make yourself short of breath on purpose. No …

1 day ago

Wheezer242

Wheezer242asked the question: COPD Inhalers that need help

I'm back on Combivent Respimat. Trouble is I don't get much relief from it alone. Figured a nebulizer would be the ticket but both the Albuterol Nebulizer or the DuoNeb seem to be too much and I wind up with major breathing difficulties. Any suggestions?

1 day ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State CaptainI'm a State Captain from Florida, and here's a picture of me at the beach, wearing my orange :-)  I love being at the beach - it's so relaxing.

1 day ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State CaptainMoving ahead on our 12th annual COPD Education Day on 9/14/2018. Worked with the webmaster to publish this link and article on our website:

https://hawaiicopd.org/12th-annual-copd-education-day-friday-september-14-2018-free/



Anyone interested is welcome to attend, pre-registration recommended!

1 day ago

edpe77

edpe77

CarolineI, a 5 van Dyke quote just for you...
"I'm one of those people who get up on the right side of the bed in the morning. I get up, have a cup of coffee and go th the gym before I can talk myself out of it."


He is pushing 100, and still very active.
ed

1 day ago

edpe77

edpe77answered the question Myths about COPD

Probably the most prevalent myth is that there is a magical "stem cell" treatment that will cure COPD. No established scientific study has demonstrated its efficacy. Hence don't waste your money with these charlatons! ed

1 day ago

Tracie Sullivan COPDF Staff

Tracie Sullivan COPDF StaffLocal governments are really important, and do a lot of work that could be affecting your day to day activities!


What do mayors do? What type of local government structure does your city, county, town, or municipality have? It can be confusing to figure out because every state determines how their local government will run either through their constitution and/or new laws. Making states vary greatly in how they run and work!

Check out this nice article here about mayors- what they can do? how they can be elected? https://people.howstuffworks.com/government/local-politics/mayor1.htm

1 day ago

Annieg06

Annieg06commented onWhy Should I Wear My Oxygen?

 Paul, thank you for responding. I am fairly new to this (2 years) and have learned that my DR is not really forthcoming with information, either on my specific health, ways to help live with this and options for me.I have the large o2 machine that I...

1 day ago

DebbieB.

DebbieB.

I am not feeling very well. The weather is causing me to feel short of breath, a bit dizzy and I am a bit hoarse.

1 day ago

  • NewestOldest
  • PDeNardoSymptoms of a possible flare up on the way are:
    Breathlessness or shortness of breath. Either feeling like you can’t breathe deeply or gasping for air.Increase in coughing attacks. Coughing helps to rid your lungs and airways of blockages and irritants.Wheezing. Hearing a wheeze or whistling noise when you breathe means that air is being forced through a narrower passageway.Increase of mucus. You may begin to cough up more mucus, and it may be a different color than usual.Fatigue or sleep problems. Sleep disturbances or exhaustion can indicate less oxygen is getting to your lungs and through your body.Cognitive impairment. Confusion, slowed down thought processing, depression, or memory lapses can mean the brain isn’t receiving enough oxygen.  If you are experiencing any of the above you should probably call your doctor.   If you only talk to the doctor's assistant it may clear you of any fears.


    Hope this helps and if the weather is truly the culprit stay indoors.1 day ago
  • DebbieB.Thank you. I have been going through alot with COPD for over 5 years. I also have severe asthma.1 day ago
Bill Clark - Community Manager

Bill Clark - Community ManagerFinally a corn maze I can handle

1 day ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Were you in denial about your COPD diagnosis?

just a note that ozone has been known to worse lung conditions for many of us, so please check with your healthcare providers before considering knowingly increasing exposure to ozone.

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.