Bill Clark - Community Manager

Bill Clark - Community Manager

Thank you to everyone who completed COVID-19 Survey #1. As you may have seen, results have been posted in the recent COPD Digest article and guided our approach to this new survey.


Survey #2


This second survey goes a little more deeply in refining some of the answers and questions we received from the first survey.



COPD Foundation COVID-19 Survey #2

Your participation continues to be of the upmost importance as we continue to ascertain just how Covid-19 is affecting our community and the special needs that are present in our community.


We hope that you will continue to share your experiences and sentiments with us by completing Survey #2.


If you didnโ€™t complete the first survey you are still encouraged to complete this Survey #2 - we hope to get answers from those who responded to Survey #1, as well as new responses from other patients and caregivers.


Thank you!


https://www.surveymonkey.com/r/6VTKN57

3 weeks ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Hello, friends! I wanted to post a picture of the white birch tree I planted in honor of my dearly departed brother. โ˜บ

6 minutes ago

Jean IA State Captain

Jean IA State Captainanswered the question GPs should not try to detect mild COPD?

I think you'd find that many of the Foundations' leaders would agree that COPD is both over and under-diagnosed and that primary care physicians should make referrals to pulmonologists for solid diagnoses and treatment recommendations. I also think …

30 minutes ago

Lungguy

Lungguyanswered the question Is this COPD?

Consider buying a $30 pulse oximeter to see if your oxygen saturation falls more that 4 percent when you become short of breath. Compression of the lungs with a reduced vital capacity is called restriction. Most PFT labs have not updated their …

37 minutes ago

Lungguy

Lungguyasked the question: GPs should not try to detect mild COPD?

This editorial was just published. I'm biased, and agree with it, but COPD Foundation sponsors will not. Big Pharma has been selling sickness for decades. What do you think? https://rdcu.be/b4oKQ

49 minutes ago

Lidia

Lidia

Iโ€™m new in this, but is good to hear of other people going through COPD , and their advice m thank you 

3 hours ago

FTL85

FTL85answered the question Copd and covid 19

https://bc.lung.ca/how-we-can-help/covid-19/coronavirus-explained-and-what-do Here is an eight minute video that explains a lot about how Covid 19 works on the body, how to prevent infection, etc. The key is the COPD population needs to prevent any …

4 hours ago

das23

das23

Happy Memorial Day to all those who serve or have served in any way-shape or form
God Bless You All!!!     Thank You!!

20 hours ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota Wishing everyone a safe Memorial Day!! 

21 hours ago

  • NewestOldest
  • edpe77
    I agree, an expanded comment to follow.
    ed20 hours ago
  • edpe77
    There are wars and then there are wars!




    While I agree with
    your sentiment Kandy, today we have a more pressing war being held
    here on our home-front and around the world... the war on COVID19.
    Currently it has taken more American lives than both the Korean and
    Vietnam wars combined, in only 4 short months. Most of us here lived
    thru the "body bags" of Nam, and some even recall Korea.
    Those wars impacted mostly young men, this war has no age barrier,
    although us here are more at risk.





    There were only 2
    wars in my lifetime that justified an American life {in no way am I
    implying those soldiers are any less worthy of memorializing}: WWII &
    Desert Storm! The former because of the consequences of failure - and
    I'm told the American public joined the fight in every possible way
    by their sacrifices and contributions to that effort. The later
    because of it's outstanding execution, planning and world wide
    coordination. Neither attribute are visible today.




    While traditional
    wars with bullets and bombs cost lives, they positively impact the
    economy by creating jobs. Rosie the riveter is legendary. The
    COVID19 war, on the other hand, is more deadly and has devastated the
    economy. The likes of which I have never experienced in my life time.




    Stay in/Stay safe
    ed6 hours ago
edpe77

edpe77

Caroline, again thanks for the suggestion of making a "permanent" copy of my PB cookie Nick 20. She just got them today, and sent me the following text..."the purple cookie cutter molds and adorable... they will be a great keepsake." Just as you suggested.
ed๐Ÿ˜‡

22 hours ago

Jean IA State Captain

Jean IA State Captainanswered the question Copd and covid 19

In the webinar on Thursday both Dr. Tomashow and Dr. Han talked about their COPD patients who had contracted the virus and recovered. I've talked with several of my doctor friends who've also had COPD patients contract the virus and survive. Of their …

23 hours ago

Scooter0324

Scooter0324asked the question: Copd and covid 19

Does anyone know anyone who has copd and become infected with covid 19?

1 day ago

edpe77

edpe77

I just put shorts on this afternoon!!! It's 82F, and going up tomorrow. Apparently summer has arrived here in Michigan. Also I just switched the furnace from heat to A/C {$$$}. Enjoy the holiday, and "stay in/stay safe"

ed

1 day ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Masksโ€”who should wear them and how to get them?

Hereโ€™s a better link just scroll down to find the video youโ€™d like. Contains a wealth of COVID-19 info. The latest video has the most current info, but all the materials are helpful. https://www.copdfoundation.org/Learn-More/I-am-a-Person-with …

1 day ago

JeanO53

JeanO53

I heard from friends that a former colleague of mine died on Friday from an intracranial hemorrhage as a result of a fall.  She was only 69 years old; one of those people filled with compassion and drive to serve others.
    Just a reminder to be careful and mindful - out there and at home.  We're not as invincible as we might like to think.

1 day ago

Dondonsoy

Dondonsoyanswered the question What is everyone doing during COVID19

Exercise, meditate and reading! I have been also doing projects around the house thankfully Lowe's has pickup service!

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

Want to wish everybody a Safe Memorial Day! 

1 day ago

PamK

PamKanswered the question What is everyone doing during COVID19

I have only been out to the grocery store and to drug store. Since the weather has changed I have been outside working in our backyard and talking to our neighbors from our porch

2 days ago

DanK

DanK answered the question What is everyone doing during COVID19

Iโ€™m the same, havenโ€™t been out since March other than to get shot in neck like edpe77. We discovered Zoom and thatโ€™s a good time killer. Have sent invitations to friends and friends we havenโ€™t seen in years. We limit call time to 30 minutes. Havenโ€™t …

2 days ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Masksโ€”who should wear them and how to get them?

Thanks to COPD Foundation for another great webinar! You answered so many of the burning questions about COPD and COVID-19, including talking about masks and what different folks have tried to come up with a less uncomfortable face covering, issues with …

2 days ago

Ojibwayne

Ojibwayneanswered the question Does anyone experience a "hollow" feeling near the adam's apple?

I have that same feeling every other day, it's like a hollow breathing effect, happens rabdomly. I dont know when it will happen, or why, I dont feel "out" of breath when it happens, its so odd. When it "does" occur, it'll feel as though I'm breathing …

2 days ago

Apricot88

Apricot88answered the question Inhaled steroids instead of LABA/LAMA?

Hi SASSYCAT...โ€ฆ as can be seen from the excellent replies to this question >>> THERE IS NO SET ANSWER โ€ฆ. as COPD covers MANY LUNG disorders and each sufferer must learn how and WHEN to use STEROIDS for their own breathing difficulties [the less …

3 days ago

sroth

sroth

not too bad tyvm

3 days ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

Having a rough day today, of course its my day off.

3 days ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

3 days ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota Here is one pic of with my mask my daughter made.  An old COPD shirt that was getting dingy so asked her to make me a mask from the shirt.  She made two and has wire for nose piece and filter inside. you can remove to wash or  new replacement filter.  

3 days ago

FTL85

FTL85answered the question Inhaled steroids instead of LABA/LAMA?

Lots of great advice here! Iโ€™ll add my 2 cents also, you must have an inflammation issue with your airways, therefore the corticosteroid works best. The corticosteroids work as an anti-inflammatory. The other inhalers you mentioned work more for …

3 days ago

Katherine58

Katherine58answered the question What is everyone doing during COVID19

Iโ€™m so bored, Iโ€™m actually talking to Siri! Not a good sign! Lo

3 days ago

edpe77

edpe77answered the question What is everyone doing during COVID19

Last week I went to my Dr for an injection to relieve a neck pain. That was the first time I actually got out of the car. I numerous occasions Lucky and I go out for fast food, or to my sister's to exchange food. All I have to do is mention "want to go …

3 days ago

JeanO53

JeanO53answered the question What is everyone doing during COVID19

I've been out a few times since March 15th. I too have been out for drives to get fresh air; a new perspective. Last week I was able to find an area in a parkway/park where there weren't many people, so I was able to get out and take some pictures.

3 days ago

Katherine58

Katherine58asked the question: What is everyone doing during COVID19

Is it me or is everyone bored? What is everyone doing during this COVID19! Iโ€™m single , in a condo Have not been out since March 25, did take a small drive - but what is everyone doing!

3 days ago

JeanO53

JeanO53Saw this posted by a former colleague on LinkedIn; interesting things to do while still staying safe!
I'm sure we at 360Social could come up with one of our own... including Making Kindness Rocks.
Thoughts???

3 days ago

KatesGirl

KatesGirl

Hello:  Can someone tell me where I can donate unused COPD medications?



3 days ago

Resurrected1

Resurrected1

Hello,


Hope everyone is doing well.


Question: Is anyone else who use Spiriva always experiencing a weight loss/How do I combat this weight loss, I am already a very thin person.


This is beginning to concern me greatly.


Thanks

3 days ago

  • NewestOldest
  • Bill66 - Bill Wornstaff NJ State Captain Good question, I'm not at work today, I dont remember anything about weight loss using Spiriva, I have Chronic Bronchitis/ Emphysema and tend to either lose weight or gain weight. I balance my diet accordingly and always have a quick discussion with my Doctor, if I'm losing weight or gaining, Caroline and edpe77 both have some great recipes to increase weight and Im sure they will re-share.3 days ago
  • HIcopd - Hawaii State CaptainIโ€™ve been taking Spiriva for most of 16 years and have had stable weight for the past 50 years. We are all different though. Maybe review all your meds with your MD and pharmacist. 


    Iโ€™ve lost about 5 pounds over the past few weeks/months because I donโ€™t go out and about as much and am not exercising as much. Itโ€™s not due to Rx, mostly laziness and the crazy COVID-19 making me want to avoid everyone. 3 days ago
  • Maverick2Your attempt to gain weight is justified as lean people have higher risk of Rheumatoid arthritis and Osteoporosis.  If you want to gain weight look at how industry do it in mass scale. The farm and poultry industry fattens the animal and birds by administering antibiotics and organic acid in the feed.


    According to a school of thought, Gut microbiome plays more dominant role than the food. It has been observed obese and lean people have distinct set of microbiome. we can makes sense of poultry industry as both antibiotics and organic acid changes gut microbiome.



    freshly extracted raw Lemon juice as such (capable to produce PH below 2) has potential to change gut microbiome. Take one lemon extract in between the meals when microbiome is highly active. Try it for one month and check for weight change. If you gain weight you can continue the treatment. on the other hand if you have accelerated weight loss you have to stop because changing microbiome also some time potentiate infection.2 days ago
Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

Good Morning

3 days ago

Jcee19

Jcee19

Hi all, I'm new to the group and not sure if I'm in the right group . I have a 72 yr old father with severe COPD . He has been in and out of hospital several times. Sometimes he has good days where he can manage to walk in garden. My problem is , when he gets severe he calls me and will not call a paramedic , he hates wasting there time , however when we do get them out the provide oxygen and he calms down and gets relief. Unfortunately they will not provide home oxygen as he will not give up his cigarettes ( I know it's infuriating , he has cut down lots and knows this has caused his illness) has anybody out there found a way to get oxygen at home or given to a family member to administer. I am so struggling at the minute and would really appreciate any help.many thanks 

3 days ago

das23

das23

Just watched 'The Big Interview' with Dan Rather on AXS TV. He had Ian Anderson of Jethro Tull on. Ian disclosed that he has COPD. He's battled exacerbations but has been prescribed meds and hasn't had one is 18 months. He's  72 years old and still doing shows with his band almost every week playing his flute and dancing-as always-on one leg. He's been advised--as all of us have --to keep pushing as long as he can--and he's doing it. It was good to hear. It's worth watching-it comes up about 40 min. in and he goes on a bit about it. A good reminder to me to keep on keepin' on--as a wise woman here says--They'll be rerunning it for a while if anyone is interested

3 days ago

FTL85

FTL85answered the question Pulmonary rehab during Covid 19

The AACPVR posted their recommendations for pulmonary rehabs opening back up. Just FYI. Posted on their Covid 19 resource page. A Very personal decision. I donโ€™t think I would recommend during covid 19 if you have 2 or more health risks such as COPD and …

4 days ago

Jean IA State Captain

Jean IA State Captainanswered the question Is this COPD?

I am assuming that the pulmonologists did breathing tests in order to arrive at the diagnosis of COPD. Unfortunately, if you did have the breathing tests, then the diagnosis is probably well documented by the testing results. It's not unusual for someone …

4 days ago

FTL85

FTL85answered the question Is this COPD?

Hi Ottsy, Was your COPD confirmed by doing a pulmonary function test? The shortness of breath can be attributed to lungs or heart as they work together. The pulmonary function test is the key to finding out that you have true COPD or lung problem. You …

4 days ago

Ottsy

Ottsyasked the question: Is this COPD?

For past few years shortness of breath has been gradually increasing so that going to the mailbox causes me to stop and catch my breath now, Pulmonolgist and testing diagnosis is COPD. Never smoked, no coughing nor sputum. I have scoliosis and Xray shows …

4 days ago

Yvonne820

Yvonne820answered the question Check In โ€“ Guess what? Kindness Rocks!!!

All of the Kindness Rocks are beautiful! Thanks for sharing them. Hugs, (Virtual) Yvonn

4 days ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State CaptainThanks, โ€‹, Stephanie Williams, RRTโ€‹, Jamie Sullivanโ€‹ and MeiLan Hanโ€‹ for an excellent webinar about COVID and the latest research.  I am sorry I had to leave after the 1st half for a 2nd conference call but it was great hearing all the latest medical research and guidance.  It was reassuring to hear that all COPD patients should continue to follow their treatment plans during the COVID-19 pandemic and only modify WITH their healthcare professional's consent IF they have COVID-19.  


It was very helpful to be given specific guidance about self-isolating when nebulizing to avoid infecting others with aerosolized droplets IF one has covid-19 (like being in a patio or separate room that is closed to others for a few hours until all the droplets have time to settle and not be suspending in the air).



It was great seeing photos of different mask options and modifications on how masks can be configured to be more comfortable for COPD patients and others with breathing difficulties.  (See close up of pipecleaner "hook" made with an clip attachment from an nametag or lanyard.)  Using 3 of them could connect your mask at 3 strategic spots on your glasses--the piece between your eyes and the two sides of your glasses.


Looking forward to COPDF posting the link to this very helpful webinar tomorrow, so we can review it and I can see the portion I missed.

4 days ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Inhaled steroids instead of LABA/LAMA?

I have definitely had different experiences in terms of symptom relief and adverse events (side effects) from various medications--LABA, LAMA, ICS. For example, LAMA Tudorza didn't work well for me, as I could literally feel the benefit ending well …

4 days ago

AliceVMC

AliceVMC

My dad keeps getting pneumonia. He has COPD but is not on oxygen. Any suggestions for treatment besides frequent trips to the hospital to get pumped via IV with antibiotics? 

4 days ago

  • NewestOldest
  • HIcopd - Hawaii State Captain
    What does his healthcare provider suggest/recommend?  How frequent are the pneumonias he gets?  What are his medications currently?  Have there been any adjustments to them?  How reliably is he taking his medications?  Does he have a pulse oximeter?  Has he had a 6-minute walk test, to see whether he needs supplemental oxygen?  Does he have any sleep problems?


    Does he cough a lot in connection with eating/drinking?  Has he been evaluated for gastric reflux/acid reflux?  How about swallowing evaluation--modified barium swallow test?  Swallowing issues can cause aspiration pneumonia.  Has he been evaluated for allergies?  Is he being optimally treated for that?  Any other issues?


    Has he been referred to pulmonary rehab?  When?  How did that go?

    Have you and he had a meeting with his healthcare team to discuss tweaking his treatment plan?  Does he have chronic bronchitis?  Has anyone suggested adding a medication such as Daliresp or Azithromycin as a preventative to help him reduce the number of exacerbations?

    Has he been evaluated at a great teaching hospital to re-evaluate his treatment plan and possibly improve it?  I have found that exceptional teaching hospitals such as National Jewish, UCSF and Stanford have been very helpful in adding new perspectives that me and my local doctors can use to help increase my control over my lung function and optimize my health generally.4 days ago
  • Jean IA State CaptainI'd see if you and your Dad can't have an appointment with his pulmonologist. to discuss your concerns and to see if there aren't some additional medications that he could take that might help relieve the frequent exacerbations and hospitalizations.  Ask about roflumilast  or azithromycin taken three times a week.  Both of these meds have been clinically trialed and demonstrated their efficacy in reducing the number and frequency of exacerbations and concomitant hospitalizations.   4 days ago
  • FTL85Great answers above and I just want to add a little more.  Frequent pneumoniaโ€™s can be attributed to dental hygiene.  Bacteria forms in the mouth and gum lines.  This bacteria is then inhaled into the lungs which can cause infection.  This is just another possibility that you wonโ€™t hear from the pulmonologist.  Your dental hygienist can tell you all about this common problem though.  Brushing frequently and adding an antibacterial mouthwash could help a lot.  Also, Visit your dentist every 6 months.  Just remember the cost of a dentist appt is much less than all those trips to the hospital.  Hope this helps.3 days ago
Cameo

Cameoanswered the question I Need oral surgery done- Use Breo Respirmat daily

I find it interesting they used such a dangerous drug for dentistry Debbie (but am aware they do use for it's short acting effect) Propofol is a dangerous combination with valium! Isn't that the combination that killed Michael Jackson!? I guess doc must …

4 days ago

COPD360social posts are monitored by Senior Director of Community Engagement 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.