Bill Clark - Community Manager

Bill Clark - Community Manager

COPD360social reaches 50,000 members!

This is the day that so many of us have waited and worked for. As we mark this amazing milestone, we do so in the knowledge that without all of you, our community, this achievement would never have happened.. The truth is, we only offered a platform and you, our community, gave it voice. You looked beyond your daily struggles and pain and instead reached out to others the hand of hope, compassion, friendship, knowledge and real life experiences. You left a loud and clear message that no one with COPD should ever feel alone. You opened the eyes of the world to the idea that those with COPD can come together in a cause greater than one individual, a model of what patient communities will strive to be in the future. You have offered insights and opinions that are now subjects of new and exciting research and technical innovations. Your hard work and passion has influenced medical professionals, manufacturers and pharma who now rely on COPD360social to gather insights as a true and honest voice of patients and caregivers and as a result you continue to influence how COPD is treated.

The amazing work you have done will benefit generations to come. It was once written that our lives will be judged on the lives we touch in our journey. You as a community have touched countless lives all across the globe and changed those lives for the better You are in every way what makes COPD360social possible and we as a foundation will always be indebted to you.

So, letโ€™s take a day and celebrate. There is still much that needs to be done. We have millions to reach, lives to touch, hope to offer. There are many more out there just like us who need what only you can provide. Today we celebrate 50,000, but letโ€™s look to the next milestones until we reach the final milestoneโ€ฆa world without COPD!

With love and thanks
The COPD Foundation Staff

17 hours ago

Bill Clark - Community Manager

Bill Clark - Community Manager

We 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 healthcare professionals are all invited to participate:

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

COPD Foundation Nebulizer Consortium (CNC) Word Cloud

2 days ago

Jean IA State Captain

Jean IA State Captainanswered the question Lifestyle -how long

To answer your first question, remember that number is an average......and it was the average when I first saw it probably 17 or 18 years ago, so I think it's old. It may, however, be real, because the average includes people who died within 3 seconds of …

12 minutes ago

das23

das23answered the question Lifestyle -how long

Welcome Vicki. You sound like you're on the right track!! You already quit smoking-excellent-you work out 3+ times a week-excellent----keep that up-take your meds if prescribed and eat as well as you can and you should have a long way to go. I'm 69 and …

56 minutes ago

215vg

215vgasked the question: Lifestyle -how long

Hi. My name is Vicki and I am. 62 year old career woman who has always been moderately active. I was a heavy smoker for 48 years ~ I quit almost 4 years ago. I plan on retiring when I am 71. I have been working out 3+ times a week for the past 3 years as …

2 hours ago

Kristen Willard

Kristen Willardanswered the question How do you stay active?

I walk the pug! Some days faster than others ...

5 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Happy Day! 
Just want to say that my phone is as slow as a turtle. The man who transferred the data to my new phone used 78 percent of my data allowance.  It should renew tomorrow. It takes me up to 15 minutes to get onto a website sometimes. 
I am going through a mess. Doc from Urgent Care had me overdosed on prescription drugs. My pulmonologist and immunologist  are working with me so I can recover safely.  I should be okay in another couple of weeks. 
Love you all! Have a pleasant day, dear friends! ๐Ÿ˜๐Ÿค๐Ÿ’›๐Ÿงกโค๐Ÿ’œ๐Ÿ’š๐Ÿ’™๐ŸคŽ๐Ÿ–คโฃ
DebbieB. ๐ŸŒž

6 hours ago

Stephanie Williams, RRT

Stephanie Williams, RRTGood Friday Morning!!!
This week you have seen a lot of posts from us about activity and exercise. It is important for all of us to move our bodies and be as active as possible.
I just wanted to share this video and see if you think this could count as exercise? On Saturdays, I strip the beds and wash and fold all the linens... I could be in for quite a workout tomorrow if I do things as this video suggests... see what you think. ๐Ÿ˜‰


https://youtu.be/sHw1LDZ9oeg

Oh Sheet! Itโ€™s just that easy #toodaloo

Household tips to make your life easy peasy! www.HappyLashes.netFitted Sheet Lifehack with Terri Estep Metz

6 hours ago

Jimmy S

Jimmy SDon't wake up with the regret of what
you couldn't accomplish yesterday. Wake up while thinking about what
will be able to achieve today. Good Morning!

6 hours ago

Bret99

Bret99asked the question: How do you stay active?

The word โ€œexerciseโ€ can have so many meanings, so letโ€™s just focus on activity. We all know it helps to be active and to get our bodies moving. It makes us feel better and healthier. Like many people, I find myself being less active during the winter …

7 hours ago

Lorrie State Captain of South Mississippi

Lorrie State Captain of South Mississippi

Mornin Everbody 
Hope ya'ens are doin well.  Ima still battlin all the health issues and boy theres a whole lot goin on.  And most of what is goin on has all been noted since Dec, 23, 2020 . I have fractures in my whole Thoracic spine each one T1- T12 and now they are goin ta look at my Lumbar spine for damage. They don't think they will be able ta do the procedure where they place cement inta ya'ens vertebra to stabilize em , so major back surgery maybe all that's left , and ima to weak at this point. My heart has also had some stuff happen since Dec, 23 2020 , along with my Lungs . My stomach is still really messed up but still no one is exceptin any responsibility for the damage that has taken place within my bile or biliary ducts . At this point ima on my Oxygen 24-7 at 4 litres and thins aren't goin very well.  They are wantin me off my daily dose of Prednisone because they feel like it's what is effectin my bones . But there's been a problem with my calcium blood levels bein high for quite some time and now that thins have taken a turn for the worse they are wantin ta dig inta parathyroid.  Ima weak and tired of fightin.  Ima down ta 92 pounds from 108 in December.  Ima goin ta meet with 3 new specialist's next week.  Please take care and ta all the new comers Please stop smokin and don't ever pick em back up because life ain't easy without ya'ens Lungs and Heart . 
Love ya'ens all 
Lorrie 

7 hours ago

Cathymo

Cathymoanswered the question Very depressed and scared

What have they done for you? I also kayak, horse ride and hike. I am distraught. Scared... Depressed... Anxiety ridden to the point I am miserable

8 hours ago

laff4evr

laff4evrasked the question: Living with Bronchiectasis: The Patient Perspective

Howdy Brian, I'm always impressed with what impaired lungs can do. If I read your story correctly, you competed in marathons with a lung function in the high twenties. Was that your FEV1 number ? I also want to ask questions regarding the marathons...

11 hours ago

das23

das23answered the question Has anyone had a "lesion" or "shadow" show up on a CT scan?

I have a small lesion at the bottom of one of my lungs. I've had it for several years and it never changes. My Pulmo is not concerned. I get my annual CT scan in a few weeks and hopefully it will be the same or gone. We'll see!!

16 hours ago

WomaninNH

WomaninNHanswered the question Did anyone's copd happen suddenly?

I don't think that COPD happens over night, it was there and we just did not know it. They say for as many people that are diagnosed there are the same amount of people that have it and do not know it yet.

18 hours ago

WomaninNH

WomaninNHanswered the question newly diagnosed /stage 2

The best thing you can do is be aware of what is going on and the treatments. I was diagnosed in my late thirties with adult asthma but now that I think about it I probably started with the COPD back then.

18 hours ago

edpe77

edpe77answered the question Has anyone had a "lesion" or "shadow" show up on a CT scan?

About 3-4 years ago my pulmo found a spot on my lung. On the 2nd scan it had changed, on that visit my daughter was there too. They convinced me to have the PET scan, and then a biopsy. That resulted in a diagnosis of NON-small cell cancer {the good …

18 hours ago

Caroline

Carolineanswered the question Has anyone had a "lesion" or "shadow" show up on a CT scan?

It is possible, but she needs to have the PET scan done. I had pneumonia and then had something show up on the CT scan. I was given antibiotics and then a PET and the PET was clear.

18 hours ago

Gwynne

Gwynneasked the question: Has anyone had a "lesion" or "shadow" show up on a CT scan?

My mother has had COPD for 11 years and had a bad "flareup" last year which put her in the hospital and on oxygen 24/7 for the first time. While she was there she had a CT scan which showed a "lesion" show up on her lung. She is 85 and did not want to …

18 hours ago

tlane

tlaneanswered the question ***ACTIVITY BINGO***

I love this! I can't figure out how to print it. Help!

19 hours ago

HSV77

HSV77answered the question Are meds given for mild copd

Hi Kbrann73, I am 43 and also in the mild stage FEV1 84% and Symbicort helped with inflammation and SOB. I started getting SOB in July 2020 then it just progressed in the next month to where I was SOB at rest also. I forced my doctor to get me PFT and …

19 hours ago

Stephanie Williams, RRT

Stephanie Williams, RRTanswered the question ***ACTIVITY BINGO***

Carol, Dan, and Caroline! Thanks for playing! I am hoping others will share their Bingo cards with us as they make progress filling them in!

19 hours ago

Kbrann73

Kbrann73answered the question Very depressed and scared

Iโ€™m with you. My breathlessness also came on this past November.In August I had kayaked miles down the Chiplola River with no problems.In October we camped at Rocky Bayou in Nicevile Fl and road bikes up and down hills. No problem. But by mid to late …

19 hours ago

Kbrann73

Kbrann73answered the question Are meds given for mild copd

On my follow up last week I was told that Iโ€™m already on the โ€œbestโ€ medicine โ€œTrelegyโ€ and nothing else inhaler wise they can do for me.Also was told that he has 70 year olds with worse function that is not that breathless. Seriously. I just donโ€™t know …

20 hours ago

edpe77

edpe77asked the question: 50k?

2... 1... 0...

20 hours ago

edpe77

edpe77asked the question: Did you Know? โ€“ Exercise Videos

If you're an AARP member, they have a ton of exercise videos as part of their rewards program. In fact, you don't need to be a member. fyi //ed...

20 hours ago

Caroline

Carolineanswered the question ***ACTIVITY BINGO***

I cannot get my scan to upload, but I have a diagonal bingo from the top left practice PLB, walk to the mailbox, Free Space, climb one flight of stairs, and 30 seconds of arm raises.

20 hours ago

Stephanie Williams, RRT

Stephanie Williams, RRTasked the question: Did you Know? โ€“ Exercise Videos

Jane, thank you for highlighting the exercise resources that are available for the COPD community. For most people, being a little more active each day can really add up to having more stamina and more endurance.*Tip- Remember to use the Pursed Lip...

20 hours ago

JeanO53

JeanO53

3..... 2..... 

23 hours ago

DanK

DanK answered the question ***ACTIVITY BINGO***

What a great idea! I printed some out and ready to go

23 hours ago

Cathymo

Cathymoasked the question: Very depressed and scared

I've posted before about my shortness of breath jjust showing up, it really did. I was going on stop up until November. I am very scared, and saddened that this emphasphmic changes has showed up on my ct scan. Scared and just depressed to the point I'm …

23 hours ago

WomaninNH

WomaninNHanswered the question Life expectancy

From what I have read you can live a long time with COPD even if you are in end stage. My dad had COPD and he passed away at 79 years old, he was diagnosed at age 62. He continued to smoke though. I wish he was still here and I could ask him questions …

1 day ago

WomaninNH

WomaninNHasked the question: Covid pneumonia question

It is my hope that they find out more information as time goes on about covid pneumonia and if people can recover from any of the damage it does. I have been on google and reading stories and from what I have seen you can get lung function back but I am …

1 day ago

Larlo

Larlo

What can we do to replace the TTOT since the company is going out of business?

1 day ago

Carol R.

Carol R.answered the question ***ACTIVITY BINGO***

Wow! Bingo is motivating me to exercise more. Iโ€™m on my way

1 day ago

Carol R.

Carol R.answered the question ***ACTIVITY BINGO***

1 day ago

WomaninNH

WomaninNH

Thank you for answering my question Jean IA State Captain. I went to the doctor yesterday and I can tell you that I need a different doctor for my pulmonary needs. I am not comfortable with this doctor. I have been using a tread mill and a recumbent bike for about a year and a half, the treadmill is not working at the moment but I have called for repair, I am currently waiting for them to call me back. As for my O2 I am 96 percent room air sitting on the couch and that was where I was at prior to covid pneumonia. When I was in the hospital for 12 days my oxygen was around 84 percent on room air, I was on 15 liters of oxygen and then gradually weaned to 2 liters which is what they sent me home with. Yesterday when I did the walk test I was ok for about a minute in the high 90s but after about a minute and a half I was at 87 percent. He is just recommending that I stay on 2 liters when I walk and then he said I will see you in six months. Hence I am not really happy with this doctor, no mention of me ever getting this oxygen weaned off or what ever. And no mention of going to pulmonary rehab. I am currently on workmans comp and I had to ask him if or when I was able to return to work. I just dont think that doctor is a good fit for me and treating of my lung disease . It is like pulling teeth to get an answer from him. I wanted to see if he would do a blood gas test and he said no, you were at 80 percent on 15 liters so there is no need. I was thinking I also had pneumonia at that time , would like to know what my blood gas is without oxygen. He does not recommend much of anything and right now I am pretty depressed about my situation. They dont know much about covid pneumonia at this time, I was never on oxygen prior to getting sick and really dont know much more than my oxygen was always 96 sitting still before I got sick. I dont know what it was when walking because I never felt short of breath so I never checked it unless I was sitting down. 

1 day ago

Bret99

Bret99answered the question ***ACTIVITY BINGO***

What a great way to get people engaged and moving!

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question Covid pneumonia question

What are you doing to help your recovery and what does your doctor recommend? You give your spirometry and PFT results, but you don't talk about your O2 saturation levels, which is what is important with regard to O2 usage. Have your O2 requirements …

1 day ago

Jimmy S

Jimmy SThe struggle you're in today is developing the strength you need for tomorrow. ... Breathe Easy  Don't compare your struggles to anyone else's. Don't get discouraged by the success of others. Make your own path and never give up.The more you've struggled to heal and love yourself, the more inspiring your story will be to others when you come out the other side full of triumph, awareness, and honor. Don't give up. Your struggle today is the source of your wisdom tomorrow.๐Ÿ˜Ž

1 day ago

Claudya G.

Claudya G.asked the question: Did you Know? โ€“ Exercise Videos

WOW, these are great.. This past year iv become so inactive, these are just what I needed. They are easy to follow and well explained. With COPD we all need to stay as active as we can..and these are a good way to get moving...Thank you !!...

1 day ago

Kristen Willard

Kristen Willardanswered the question ***ACTIVITY BINGO***

PRINTED AND I'M READY TO GO!

1 day ago

Kristen Willard

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

We are so glad you are finding these helpful. Has anyone tried these recently for the first time? We'd love to hear from you!...

1 day ago

Kamelia

Kamelia

Hi everyone...I hope all of you have a good health...is there any of you could tell me about the COPD stage progress? It confusing me a lot...because this several weeks I have a shocking moment with my COPD...


1. I'm in Indonesia and we usualy take a bath with not too cold but not warm water...and I'm OK with it...but now not anymore...I need to take a bath with warm water...


2. I always helping my mom in cooking...now I can't help her again because if I inhale the smoke from oil or other it will make me difficult to breath...


3. If I'm can't work again...because for me (I'm 41 years old) the work that I do is not heavy...but it is vice versa with my lungs...it makes me difficult to breath too...


4. I also become very sensitive of all the odor...


Could you give me some advice what should I do?


Thank you for all of you here...

1 day ago

  • NewestOldest
  • KameliaHope there is an input for me about what should I do...because every time I got shortness of breath I should change my medicine...and the dosage also the variety of medicine will be increasing...all my family were confusing now...1 day ago
  • Bill Clark - Community ManagerWhat you are describing is pretty common with COPD in the later stages. I still cook but moving away from a hot stove and back again really messes with my breathing.  Cold water (including rain) really hurts my breathing. I find using my rescue inhaler prior to bathing and cooking really helps...the same with doing activities. As far as activities you have to learn to pace yourself and stop before you get badly out of breath. As far as changing medications, I think taking thye when you need to will get you better results. Welcome to our community!1 day ago
  • KameliaOh...OK...so...I need to ask my pulmo doctor to give me other medication who are able to use anytime I need...because my pulmo doctor give me fixed medication which I can't add in other time I need it...


    Thank you Bill Clark for your answer...18 hours ago
WomaninNH

WomaninNHasked the question: Covid pneumonia question

Has anyone here had a recent bout of covid pneumonia and how did you do after? I caught covid pneumonia in December of 2020 and I am three months in and still on oxygen, I was not on oxygen prior to this. My FEV1 yesterday was 70 which is higher than …

1 day ago

WomaninNH

WomaninNH

I just have a question, I have copd and caught covid pneumonia in December of 2020. I had a test yesterday that said my FEV1 was 70 which is higher than last time I was tested  which was in 2017, which he said was up due to my exercising ,  but my DLCO is only 41, which in 2017 it was in the 50s.  This makes me nervous . Also I never used oxygen until I caught covid and after three months I am still on oxygen 2L on exertion. I am still out of work and hope to return at some point in time. Question is does anyone think that I will recover and get my DLCO back up? There are still alot of questions when it comes to covid but I am hoping that I get better. lso I was not aware of the DLCO until yesterday, I was always concentrating on my FEV1 but now I have another number to worry about. The lung specialist said that is a low DLCO and that it means I am not in great shape. I take symbicort twice a day for my  COPD. I joined this forum today because I have never  needed support until now. I was always very independent and worked but now my fate is up in the air. Thanks in advance for any encouraging words .

1 day ago

Kat Brown

Kat Brown

New here, diagnosed in 2017. Feeling ok at the moment. 

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

Morning Everyone, Hope everyone is Good? ed pay attention, almost at the 50,000 mark, its pretty incredible! Hope I can check in later! God Bless, love you guys Bill66 

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.