Bill Clark - Community Manager

Bill Clark - Community ManagerOur virtual advocacy event will take place Tuesday, October 12, 2021. We hope you will seize this opportunity to inspire action in COPD by sharing experiences and speaking with members of Congress to highlight the critical needs in our COPD community. Advocacy is no longer just about speaking up to support policy changes. Stakeholders, such as those who develop drugs and devices, design healthcare, and make regulatory and reimbursement policy, are looking to infuse the patient, caregiver and healthcare professional's perspectives into their work in a meaningful way. The COPD Foundation is working hard to ensure your voice is heard in these initiatives.


Prior to our IMPACT 2021 event, the COPD Foundation is sponsoring a 90-minuteListening Session with the FDA focusing on the need for qualified drug development tools to stimulate and support new therapies. The IMPACT2021 Agenda will leverage the outcomes from this meeting as well as the need to prioritize another year of CDC funding for a Chronic Disease Education & Awareness program to combat COPD. We invite you to dial-in as an โ€œattendee onlyโ€ to the Friday, October 8, 2021 FDA Listening Session, even if you cannot participate in IMPACT 2021 (more details forthcoming). There is no travel to Washington, DC required. All activities will be conducted from the comfort of your own home as long as you have access to a computer with internet and a telephone. There is no cost to participate in this program.


If you are interested in participating click here: https://www.surveymonkey.com/r/IMPACT2021Registration

16 hours ago

Bill Clark - Community Manager

Bill Clark - Community ManagerAdvocates are needed now more than ever!


The COPD Foundation is recruiting volunteers to join our
Captains Program. Do you want to advocate for legislation that affects the COPD
community? Participate in health fairs and educational events? Offer support
for others impacted by COPD, bronchiectasis, or nontuberculous mycobacterial
(NTM) lung disease? There are so many ways a Captain can get involved! U.S. and
international volunteers are encouraged to join.


There are many good reasons to volunteer. Volunteering
allows you to develop experience and skills, connect with community, expand
your network, boost your social skills, gain valuable information, and of
course, make a positive impact on our communities. We do our best to provide
our captains with the tools, education, resources, and support they need to
make a difference.



COPD Foundation Captains may be people living with COPD,
caregivers, healthcare professionals, family members or others who have a
sincere desire to make positive contributions to our communities. Time
investment and activities are for our volunteers to decide. 

Apply Here:  https://www.surveymonkey.com/r/HMCPJKJ

2 days ago

Norso

Norso

Good afternoon everyone... I'm finding yne last few weeks i have less energy than usual...I'm tired most of the time... Is this usual? Any ideas?

1 hour ago

  • Jean IA State CaptainThere are lots of reasons you might be tired; fatigue is a symptom of many different conditions and COPD is only one.  It's not normal to have a sudden drop in energy, so getting checked out is one thing you should do.  Other than that, I'd start thinking about what's been different over the last few weeks; is there anything going on that could account for this?36 minutes ago
DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Fluffy Friday from Tilt-A-Whirl, a kitty that visits my sister's yard quite often! ๐Ÿ˜บ

7 hours ago

Richard DJ

Richard DJanswered the question Turmeric supplements

I just couldn't pass this one. I will try to shorten my answer, but I hope I am not too short. My sources are from Salk Institute, UCLA, Mayo Clinic and more. The active part of Tumeric is Curcumin. I have a friend who has been saved from Alzheimer's …

9 hours ago

edpe77

edpe77

I just got 40 Bic permanent ink pens. My old sharpies have given up the ghost. Good riddance - the fumes were excessive. Bic features "low odor" as a selling point. They are indeed very low odor. You can write on anything, like freezer bags or medicine bottles.  Worth looking into for those of us sensitive to perfumes!  //ed

17 hours ago

Donald F.

Donald F.

Hi young lady Friend.  Have to spread some good news with someone.  The VA approved the mobility scooter and ordered it for me.  They  are working on setting up to re-do the back for ramps etc.  and put a lift on the car. Thank you for letting me share with you.  Don.

21 hours ago

Stephanie Williams, RRT

Stephanie Williams, RRT

Today is the day!! We will be having our COPD360 Social Hour this afternoon at 5pm Eastern. I would love it if you all will join me! This is a free event, just a time to connect with people from our community and share thoughts and ideas about living with COPD. Oh, and we usually have a good time together, too! At least, I know I do!Feel free to pop in and say "hi"! I hope to see you there!
https://meetings.ringcentral.com/j/1442251791?pwd=d1dmWEpjbFRsaTBueGFXWi9Rd3R6dz09

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainasked the question: Eating Well: From Debbie Bโ€™s Kitchen to Yours

TRENDY, QUICK BREAKFAST IDEA!Mash 1 avocado. Spread it on a piece of grainy toast. Top with a fried egg. Couldn't be any easier! ...

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question 3rd Covid Vaccine shot? Do corticosteroids = immunocompromised???

Both my pulmo and my PCP agreed that I am NOT immuno-compromised (I do take Advair, but I've taken prednisone once in the last seven years). So I will wait until the vaccine is available for ordinary people my age. In the meantime, I got my flu shot at …

1 day ago

muddleaged

muddleagedanswered the question 3rd Covid Vaccine shot? Do corticosteroids = immunocompromised???

I asked my pulmo, if and when I should get it, and he said I should at 8 months, which would be the end of October. I asked my primecare, and he said get the high-dose flu shot in September, and wait at least two weeks for the Covid Booster. That …

1 day ago

Robomom

Robomom

Im wondering if theres anyone like me in herโ€ฆ Ive never smoked.. and this is my reward

1 day ago

Donald F.

Donald F.

In a few weeks the VA will delivering a 4 wheel mobility scooter. Any advice from those using one?  Pros and cons.

1 day ago

edpe77

edpe77answered the question 3rd Covid Vaccine shot? Do corticosteroids = immunocompromised???

When I asked my pulmo about 3rd shot...GET IT was his prompt reply. //ed

1 day ago

MMalinar

MMalinaranswered the question 3rd Covid Vaccine shot? Do corticosteroids = immunocompromised???

I do and am my way into the hospital for the 4th time this year. I was on a regiment of 20 mg prednizone a day for over a year it was so bad along with another chronic condition. Stopped this last may. They gave me just the 7 day pack not as strong and …

1 day ago

Norso

Norsoanswered the question Check In - Let's talk about vaccines

I want flu jab and pneumonia and was supposed to have them last year but the NHS ran out!!! I've had 2 flu jabs prior though. I had pneumonia jab appointment but NHS cancelled it

1 day ago

edpe77

edpe77answered the question Check in - Communicating with Family and Friends

I have 2 "care givers" my older sister and daughter. Both will do anything for me, and I do let them know how I'm doing. My daughter is my greatest advocate. Several years ago O took her to the Chicago COPD conference. She got to meet many of you and …

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captainanswered the question Check in - Communicating with Family and Friends

Hi Jane! 👋 I can say that if we are communicating by talking, hollering is a big no-no. Using a normal speaking voice and tone is non- belittling and non-threatening. You can start out by saying- I have something I'd like to discuss with you. Or, I …

1 day ago

Dawn Lawson

Dawn Lawson

Hey guys. I am brand new. I wanted to write a letter to Medicare re paying for pulmonary rehabilitation maintenance. An hour and three chats later, I still do not have an address. ๐Ÿคฃ Some of you know me. For those who do not, I was diagnosed 6 years ago with 18% lung function and told I would not live out the week. I eventually found a Facebook group that took over my healthcare and made me go to rehab. After one year, my lung function had increased to 24%. I am extremely fortunate -- my hospital system pays for maintenance. I exercise in some manner every day, and I have never been hospitalized. I am dismayed that Medicare is unwilling to spend a little money to save a lot of money. I just applied to be an advocate.

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Hello! How is everyone doing today? Hope you're all having a great day!
Does everyone have one good thing today, that they are grateful for? I bet each of you does have at least one thing. ๐Ÿ™‚
My one thing today is::: I have plenty of shelf stable food that doesn't need refrigeration. Thank goodness! ๐Ÿ˜‡

1 day ago

Jane M. Martin

Jane M. Martinasked the question: Check in - Communicating with Family and Friends

Do you ever find yourself in a conversation with someone close to you, thinking, "That's not what I meant!" Getting others to understand what we are trying to say is not always easy. Weโ€™ve all had frustrating conversations when it seemed that no matter …

2 days ago

Doris W

Doris W

I am Ok

2 days ago

Richardf2

Richardf2answered the question Susanng-I think I'm about to bite the bullet and spend $3000 + on an Inogen One G4

I just purchased the 5. Itโ€™s well worth the money! Very easy to use

2 days ago

Norso

Norsoanswered the question Please shed light on my Consultant findings

Thanks Caroline..I dont think I've had diffusion tested? You have had it rough hole in diaphragm and lung collapse. (Totally different subject but your hair style looks good...sadly I have none to style! Well a few strands of I didn't shave them …

2 days ago

Norso

Norsoanswered the question Please shed light on my Consultant findings

Thanks Jean but that could someone could be stage 1 on one test and or stage 2 on a later test? Is that right? Or have I misunderstood?

2 days ago

Norso

Norsoanswered the question Please shed light on my Consultant findings

Hello Caroline, thanks but what is my diffusion rate?

2 days ago

Bruce W

Bruce W

I am 69 and will be 70 in two months I am good so far I have been with copd since 2001 I do get very short of breath when doing any thing but I take my time when I get really short of breath I do some small breathing exercises for a minute or two my doctor at the veterans out patient clinic he told me to keep doing what I am doing still no new changes in my lungs they are still the same as two years ago

2 days ago

Jean IA State Captain

Jean IA State Captainanswered the question Please shed light on my Consultant findings

Sure they can both be right. Each one is a snapshot of how you're doing at the moment the test was done. The tests aren't absolutes, like you do it once and that's it for all time. The test results can actually change from hour to hour depending on …

2 days ago

Stephanie Williams, RRT

Stephanie Williams, RRTHello friends! Thursday is our Social Hour support group call. Would you like to join us? We would be happy to see you there! Here is the link to join: https://meetings.ringcentral.com/j/1442251791?pwd=d1dmWEpjbFRsaTBueGFXWi9Rd3R6dz09


See you Thursday at 5:00pm Eastern!!

2 days ago

Norso

Norsoanswered the question Please shed light on my Consultant findings

Caroline and Jane... thanks. That's all both the private and NHS did at the respective appointments which were 6 months apart. (One in 2020 November and one in may 2021). Maybe because of covid and maybe because it's UK? I've never been offered a …

3 days ago

Caroline

Carolineanswered the question Please shed light on my Consultant findings

There are a number of things that affect the results of the test. If you had some type of allergies going on, how well you cooperated with the person giving the test. How experienced the person giving the test was, or how persistent they were in telling …

3 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Good morning! Well, our refrigerator is not working. My husband is staying home today in hopes of fixing it. 
Sadly, my parakeet Celeste Rita passed away during the night. Looks as though she had a stroke.
I have full confidence in Bruce's abilities. To work we go...
Have a great day!!!

3 days ago

Norso

Norsoanswered the question Please shed light on my Consultant findings

Found earlier results from private appointment... So november 2020 private tests: Fev1 71 percent of predicted. Fvc 70 percent of predicted. With peak flow 68 percent of predicted. Then just 6 months later at NHS. Fev1 80.3 of predicted. Fvc 85 …

3 days ago

DM100

DM100

Greetings and good Tuesday morning to everyone!!!  
When I had the pulmonary function test in late July of this year:  (FVC 86%, FEV1 73%, FEV1/FVC 84%, FEV6 84%, FEF25-75 38% and FEFmax 120%) (TLC 94%, FRC 105%, RV 109%, VC 84%, IC 81%, ERV 93%, RV/TLC 116%) (Diffusion Capacity was 71%).  The diagnosis was moderate COPD based on the diffusion but do not have any difficulty with breathing at all!  I opted to not use any medication for the time being and continue with daily exercise and walking.  I could use some input on my function numbers and should add that a routine cat scan showed mild emphysema, so mild the doctor said that he was not surprised that I did not know I had anything going on.  What are your thoughts on the the moderate diagnosis based on the fact that I feel fine?  Thank you so much for your thoughts!!!

3 days ago

J.News

J.NewsDr Tom Petty's Patient Question Archive, a Treasure Trove of Information for those of us on our Journey

I'm hoping this post is a meaningful contribution for you all.

I know some of you here will have met or worked with Dr. Tom but for those of you who don't know who Dr Tom Petty was he's not the one from the Heartbreakers who passed away in October 2017.

Tom Petty was a leading Pulmonary Physician from Colorado who put patient care as his number one priority. He pioneered long term home oxygen therapy in COPD. A cruel twist of fate meant that he himself ended up on LTOT for a substantial time in his later years.

https://www.lunghealthonline.com/headlines/2009/12/petty.cfm?__cf_chl_managed_tk__=pmd_CPhFDi4VI.OiRtEgrFuM9g_PER5xNuNUKXMmrk6Zbxs-1631610441-0-gqNtZGzNAtCjcnBszRTR

His letters to patients were very popular and worth a read also.

https://perf2ndwind.org/tompetty/index.html

He was a kind man who offered much to his patients, I have personally conversed with him a year or two before he passed away. He wrote books on COPD (available for free) and answered patient questions online. I recently found his "Ask Dr Tom" archive. It's really worth a look as many of the questions users post here are answered by Dr. Tom himself. Dr. Tom passed away in 2009 @ 77. His legacy lives on.


Heres the Q+A archive;

https://www.lunghealthonline.com/dr_tom/archive/

Maybe the COPD Foundation can harvest this valuable Q&A section for patient reference. It's really valuable.

3 days ago

Norso

Norsoanswered the question Please shed light on my Consultant findings

Thanks Jean. Where it gets confusing is I had a private test prior to this as this NHS one kept getting cancelled due to covid. The private results were significantly worse. I think from memory lung function was 71 percent on that. Would it improve …

3 days ago

Cathymo

Cathymoanswered the question confused

Thank you for responding. I was hoping you would. All of this journey started in November when I fainted, hit my head and had a seizure in Lexington Hobby Lobby. Results from the ER showed nothing out of the ordinary except for high WBC. My only …

3 days ago

TJHill

TJHillanswered the question PFT results questions

Jane, thank you. Itโ€™s funny you mentioned the therapy, as I was in rehab today (mon, Wed, Fri) and I shared my PFT results with 2 of the therapistsโ€”-they both deal with pulmonary patients as well. They walked me through some of the numbers, which was …

3 days ago

Jean IA State Captain

Jean IA State Captainanswered the question Please shed light on my Consultant findings

FEV1 is the Forced Expiratory Volume in the first second; in other words, what you can blow out in the first second of the blow. Vital capacity is Forced Vital Capacity; how much you can exhale for the whole exhale and the ratio between them is the FEV1 …

3 days ago

Kristen Willard

Kristen Willardanswered the question Do you know your movies???

WOW! Y'all are fast. This was a good one.

3 days ago

Norso

Norsoasked the question: Please shed light on my Consultant findings

Hello again. I've seen the NHS about 4 months after seeing a private hospital. The private hospitals readings were worse for me than NHS (I'll try and dig them out) but here is what the NHS tests found... "Investigations: Lung function test done. …

3 days ago

J.News

J.Newsanswered the question Cor Pulmonale in Mild COPD

Thanks for all your answers especially Dave. It was actually a small hill for you US guys 🤦🏻โ€โ™‚๏ธ 1000ft above sea level and 2 and a half hours over undulating terrain. The highest point here in Ireland is 3048ft.

3 days ago

edpe77

edpe77answered the question Pulmonary Vest Options?

As for insurance... at 65 {12 years ago} I chose traditional medicare thru AARP. It has covered all my medical expense to date. It's too late for me to switch to an advantage plan {think pre-existing conditions/re-qualifying} however, today there may be …

4 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Hey folks! In going through my emails, I just discovered that today is POSITIVE THINKING DAY! Mark your calendars...September 13th, every year! YAY!!! ๐Ÿ˜„๐Ÿ˜Š

4 days ago

Dave Mannino

Dave Manninoanswered the question Cor Pulmonale in Mild COPD

Cor Pulmonale ( Right sided heart failure) is not a feature of mild COPD in isolation. In my experience- this would be mild COPD + something else ( Obstructive sleep apnea, history of pulmonary emboli, pulmonary hypertension) ECG would not pick up most …

4 days ago

Dave Mannino

Dave Manninoanswered the question Having Kitchen Painted

Given your history of "severe COPD" from you prior posts, you are probably at risk for problems while this dusty and irritating activity is going on. I think the advice from Ed, Bill and Jean above ( to live somewhere else temporarily while this work is …

4 days ago

Dave Mannino

Dave Manninoanswered the question confused

Sometimes it is difficult to get definitive answers-- everyone is different with varying thresholds for what bothers them. We have seen these symptoms emerge after a respiratory infection ( Covid has been notorious for a number of upper airway and nasal …

4 days ago

Dave Mannino

Dave Manninoanswered the question PFT results questions

You have what we call a "mixed" spirometric defect- which includes both a restrictive (smaller lungs) AND and Obstructive (COPD) component. Restriction is related to a number of processes ( Heart failure, diabetes, obesity, are the most common). So-- …

4 days ago

JVS

JVS

Hello to all--


I was just diagnosed with COPD stage 3.  I am 52 years old & terrified of the damage I have done.  I walk 2 miles a day and am taking trelegy, but am in great fear for my family that I will be in stage 4 and gone before I can enjoy grandkids.  I stopped smoking years ago but fear this will still get worse.  I'd love to hear some inspiring stories as I am low on hope at present.

4 days ago

TJHill

TJHillanswered the question PFT results questions

thank you, Jean, for your response. Much appreciated! Iโ€™m in cardio rehab due to a heart attack and subsequent heart failure. My cardiologist is the one who ordered the PFT. I work out 3 times a week, but my breathing has gotten more difficult and sob …

4 days 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.