Bill Clark - Community Manager

Bill Clark - Community Manager

Why is COPD360Net so desperately needed?

When asked in various surveys, our patients have consistently stated the need for new and better treatments and the fact that the medicines being used today have not substantially changed in over ten years. As a result of your input, the COPD Foundation has created COPD360Net, a new and innovative Digital Health and Therapeutics Accelerator Network. COPD360Net has been created to develop digital heath tools to help patients and professionals better manage and improve treatment of COPD; accelerate clinical trials for potential new therapies and medicines that will improve patientโ€™s quality of life and disease management.

Our focus:
โ€ข Accelerating the Development of digital health tools, techniques and treatments including previously tested medicines and therapies that were promising but were dropped by Industry
โ€ข Implementing new ideas for clinical trials such as studies for specific groups of people with COPD at different stages of the disease 
โ€ข Making sure best treatments are put into practice to improve care and outcomes for our community 

How will the COPD360 Community Engagement Committee support this?

The COPD360 Community Engagement Committee which consists of patients and caregivers from different backgrounds, is focused on providing the voice of patients and caregivers to all of the Foundationโ€™s efforts and its interactions with other organizations. 

The committee pledges to:
โ€ข Gather input from our COPD Community
โ€ข Advise on priorities that are important to patients and families
โ€ข Provide input into all aspects of COPD Foundation patient engagement 
โ€ข Ensure the interests and safety of patients are always our first priority in everything we do

Launching soon!

4 days ago

Lorrie State Captain of South Mississippi

Lorrie State Captain of South Mississippi answered the question Do you use a fan when you feel breathless?

I keep our room at 64 at night and ceilin fan on , durin the day keep it at 70 ta keep the humidity outta the room . But I stay outside as much as I can cause, when it gets cold ima always inside. Ya'ens Friend Lorrie

9 minutes ago

Jean IA State Captain

Jean IA State Captainanswered the question Oxygen change when laying down sleep.

Remember that when we sleep, our breathing is shallower than when we're awake, and that when we wake up, our breathing automatically becomes deeper. So you're not ever going to know what your O2 sats are while sleeping unless you do an over night …

1 hour ago

edpe77

edpe77answered the question sp02 lower on different oximeter...Pulse Oximeters... How reliable

Just a follow up on my above comment. A few minutes ago I sat down to do a Symbicort puff. So, I put the pulseox on, started a couple PLB's so I could get a "long" inhale for my med. Initially it indicated 98% {quite high}. I took it off an put it back …

1 hour ago

Stephanie Williams, RRT

Stephanie Williams, RRTanswered the question Teaching with a Twist - Oxygenate

I saw some recent questions in the activity feed about oxygen - thought this little blurb might be helpful information for the group.

2 hours ago

edpe77

edpe77answered the question sp02 lower on different oximeter...Pulse Oximeters... How reliable

As said above pulseox can be frustrating and miss leading Changing fingers, can produce different readings, using it in the car {think vibration} or bright sun light, or wet fingers. Let's say I get a reading of 84%! I remove my finger, and replace - now …

3 hours ago

edpe77

edpe77answered the question Oxygen change when laying down sleep.

Clearly you need to talk w/your pulmo regarding regarding actual O2 requirements. Two things you mentioned that piqued my response. First, my O2 is typically at 3lpm, last week I raised it to 3.5lpm because of low stats. Second, I know when lay down, my …

3 hours ago

JeanO53

JeanO53answered the question What you say, Yet another wackie wordie?

Looks like we're stuck on C3! Any hints???

3 hours ago

Mobal

Mobalanswered the question sp02 lower on different oximeter...Pulse Oximeters... How reliable

I have two different oximeters that I check against the doctors as a base. Both seem to read a point high. I also know that one reads accurately pretty quickly while the other seems to take about 15 seconds for an accurate reading. I am not sure of the …

4 hours ago

Minuteman3

Minuteman3asked the question: Oxygen change when laying down sleep.

This might be a problem with my head music and not my oxygen level. I recently had to increase my O2 to a minimum of 4 lpm to maintain a sat of even as low as 85-88. I did this on my own as I had no upcoming dr appt. Other than not being able to maintain …

4 hours ago

ASmith2

ASmith2

Hi Caroline, I tried numerous times Saturday to connect and practice. Soapbox, would only let me be in preview.  We will do fine.  I hope that you have a healthy and happy week

8 hours ago

Coyote

Coyote

I am 69 years old, smoked for over 40 years, Yes I have COPD Emphysema, was informed 3 years ago with the VA, I have had x rays saying that I have a emphysematous chest and that's all they have said. I currently am taking Singular 10 mg daily and inhaler Spiriva x 2 daily and that is all I have been given to date. Yes I quit smoking on 1 November 2014 and on March 15 I had a heart attack with quad bypass. I have had only 1 ABG which they said my O2 sat was low and that is it. I do not know what stage I am in at this time. I travel a lot with my job with the government so it is hard to keep a regular schedule with the VA. I ask for other medications like Combivent or Trelogy or another medication for COPD but the doctor at the VA says no they are not authorized due to cost and I must be on others first before she can seek permission to give something else. I am not sure what else to do. I am short of breath upon exertion. I think I need to try and find a pulmonologist on the outside what do you guys think?? 

8 hours ago

  • NewestOldest
  • das23Welcome Coyote.....To get an accurate diagnosis of COPD you need to have a Pulmonary Function Test. Sounds like going to a Pulmonologist outside of the VA would be a good idea. Click on the tabs at the top of the page--there is a lot of information there that can help you. Good Luck--Glad you're here7 hours ago
  • CarolineWelcome to the group Coyote.  I agree with das23 that you need to try to see a pulmonologist whether it is within the VA or outside the VA.1 hour ago
  • Jean IA State CaptainThe definitive diagnostic tool for COPD is a spirometry or Pulmonary Function Test and it doesn't sound as though you've had either.  You do need to see someone who will do appropriate diagnostic testing and then put you on a treatment plan that meets your needs.  You may have to work with the VA for medications, but at least you'll have the diagnosis right, and an outside doc might be willing to work with the VA to get you the meds that are appropriate for you.  Worth a try.......56 minutes ago
Jean IA State Captain

Jean IA State Captainanswered the question sp02 lower on different oximeter...Pulse Oximeters... How reliable

All oximeters have a confidence range of 1 to 3 points, so any of them could be off by as much as three percentage points. Whether your fingers are cold, how steady you are (if you're moving or your hands shake can make a difference) and nail polish can …

10 hours ago

Mobal

Mobalanswered the question What you say, Yet another wackie wordie?

D2 Recruiting Infractions

10 hours ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

Good Morning Everyone. Hope everyone had a Great Weekend... 

13 hours ago

Sassycat

Sassycatanswered the question Is it okay toHave a glass of white wine

If you like wine, have a glass unless you have health concerns that negate it. I love wine. I have glasses (well, one at time, a couple of times a week). It is one of life's pleasures for me, along with a good dark chocolate.

13 hours ago

Norso

Norsoasked the question: sp02 lower on different oximeter...Pulse Oximeters... How reliable

Good morning everyone, well it's morning uk time. Bit depressed as I got bought spare meter to check sp02 in case other one was not accurate. This one usually measures my sp02 1 to 2 points lower than all the previous readings I have given on here. …

15 hours ago

BlairT

BlairTanswered the question Is it okay toHave a glass of white wine

LIke many things (except stopping smoking!) I think the best course of action here will vary here depending on the state of your health and other individual factors. I've only had COPD for ~ 1 1/2 years but I don't notice any negative side effects with a …

22 hours ago

BlairT

BlairTanswered the question Do you use a fan when you feel breathless?

We have a ceiling fan running on top of our bed at home that I like, but I don't notice any breathing problems when I am away in places that don't have one. I've started experimenting with a humidifier right beside me (in the last month) and so far I …

22 hours ago

JeanO53

JeanO53answered the question Do you use a fan when you feel breathless?

I usually have at least the ceiling fan running all of the time, but also have table fans throughout the house. I prefer a cooler room temperature as well, but I also run the fans to keep the air in the room moving. There's something about "still" air …

22 hours ago

das23

das23answered the question Do you use a fan when you feel breathless?

I like a cool room and some air blowing on me when I sleep. I also use a white noise machine and an air purifier and a humidifier!!!!!---- Good luck sleeping with me!!!!!!!

1 day ago

Mobal

Mobalanswered the question Do you use a fan when you feel breathless?

Personally for me, I use the A/C as much for humidity control as temperature. Living on the Gulf coast both can be problematic. I was worried with this last hurricane (Sally) that I would have very difficult times. Luckily our power was restored within a …

1 day ago

BlairT

BlairTanswered the question Does anyone else live in the Pacific Northwest and dealing with the smoke?

We stay in British Columbia, just north of Washington, when we can on vacation. No major fires like what you've in the NW USA but the smoke did spread a lot. This level of smoke chased us home to Alberta. At one point you could see the haze looking …

1 day ago

tom goeman

tom goeman

i  am     tom  have  had  copd   for   5  years.    now  my   addditional   problem   my   nose   runs   constanty.   can   anyone   relate  to  this.?       i  take   some  many  pills  now   one   more  wouldn;t    matter

1 day ago

Norso

Norsoanswered the question No help for me...

Hello Leslie, Everyone had given you great advice. This forum is like that. Im A newbie too and that's what I've found. Stick around and you'll learn a lot. Some very inspirational posts from done remarkable people

1 day ago

Lyzzard

Lyzzard

๐Ÿ˜ did anyone in COPD Social have it and resulting, lingering effects? Ive had no taste or smell for over a month now.

1 day ago

JeanO53

JeanO53answered the question What you say, Yet another wackie wordie?

C1 - Tailgate Party... D1 - Call for Backup... D3 - Back Field in Motion

1 day ago

Stephanie Williams, RRT

Stephanie Williams, RRT

This community is special. I am so honored to be here and participate with all of you.  I love how you all are here to support each other through difficult times, and I love how you are so wonderfully loyal to the friends you have found here. Thank you all for the contributions you make and for the way you make this community better and better all the time! โค

1 day ago

edpe77

edpe77answered the question What you say, Yet another wackie wordie?

A2 a friend in need is a friend in deed C2 - rise of the phoenix //ed

1 day ago

Mobal

Mobalanswered the question What you say, Yet another wackie wordie?

A1 Baby Back Ribs (YUMMY!) A3 High and Mighty

1 day ago

das23

das23answered the question What you say, Yet another wackie wordie?

B1..Water Spots B3..Temperature Rising B2..Coming down with Cold

1 day ago

edpe77

edpe77asked the question: What you say, Yet another wackie wordie?

This one looks easy. //ed

1 day ago

Kym D

Kym Danswered the question Does anyone else live in the Pacific Northwest and dealing with the smoke?

Yes, I live in WA. Luckily there are no fires near me, but unluckily, the wind has brought in the smoke. As I only recently found out I have COPD, I am just learning to deal with it, but the only thing I know to do is stay indoors as much as possible and …

1 day ago

Kym D

Kym D

So after years of complaining about/dealing with a chronic cough, having to spit all the time (ie excess mucus), and this year, a lot of shortness of breath, I was finally diagnosed with COPD, great timing ๐Ÿ˜’ (better late then never, I guess, but very frustrating, given what I am finding out about the symptoms, I don't know why I wasn't sent for a test along time ago, sigh).  I live in a rural area, so don't have a lot of 'in-person' resources, so looking for info, feedback, etc from other people who are going through it and professionals that actually know what they are talking (ie I don't get my medical advice from Facebook ๐Ÿ˜), I have kids, grandkids, pets, an active life, and I want to continue to enjoy it.
Given my symptoms, the diagnoses made sense, but also didn't make sense, I don't smoke, I don't live with a smoker, my friends/family don't smoke, I don't live in a polluted area, I don't work in a polluted environment, nobody in my family has it, statistically I'm not suppose to have it, anybody else have the same experience?
Ever since the diagnosis, I have obviously been researching treatment/management.  What have others found that has worked? Obviously a healthy diet is preferred for everyone, but I have read that possibly eliminating certain foods may help people with COPD, anyone have experience with that? The excess mucus is driving me crazy (is gross), what kind of success have people had with the lung flute, other treatments? Also, I am an avid amateur nature photographer, so go hiking a lot. Are there other hikers here? What has been your experience? Any gym rats? What has helped you there?
Thanks 

1 day ago

  • NewestOldestClick to View All Comments8 comment(s)
  • Jean IA State CaptainI think what you really want to know is how you manage and control COPD so it doesn't manage and control you.  No smoking, which is clearly not an issue for you is probably the first and most important thing.  Second is a daily exercise program.  As crazy as it sounds, exercise is the best thing we can do for ourselves.  So talk with your doc about a daily exercise program that involves at least 30 minutes of daily aerobic activity that gets you huffing and puffing and sweating; you want it to be as hard as you can manage.  You should also do regular strength/resistance exercises as well, concentrating on upper,. lower and core muscle group exercises.  


    After that, pay attention to your diet and keep your weight as close to normal as you can manage.  Take your meds as prescribed, get your flu and pneumonia shots, stay away from people with bugs and get to your doc ASAP if you do get something respiratory.  That's worked for me for over 20 years and I think you'll find that it will help you as well.


    One thing I almost forgot.  Have your pulmonologist test you for bronchiectasis.  Your excess mucous brought that to mind.  Sometimes it can really flare up and cause nasty problems, so you need to know if that's part of your diagnostic  list.


    There are hikers, gym rats and other like minded people here.  I think the mantra for most of us is do what you can, the best that you can, as often as you can.  I think you'll find that you can still hike, still photograph lovely scenes, go to the gym and be as active as you have been.  Going to the gym works for us because if we go to the gym and work like crazy, we can do these other things much more easily.  Having a life and enjoying it is critical for most of us.  Some of us have to make some adjustments, but we do have good lives!1 day ago
  • CarolineHi Kym D, You have gotten great advice from those who have posted before me.  I am not a gym rat, but I am an exercise enthusiast.  My undergraduate degrees are biology and health and physical education.  I have exercised my entire life and feel that I would be in much worse shape than I am if I did not.


    One thoracic surgeon told me that I was well equipped to survive because of the layers of well developed muscle tissue that he saw.


    You need to eat a well balanced diet, get plenty of rest, exercise daily and keep a positive mental attitude.  I try to do these things and am living a very good life at 76.23 hours ago
  • Kym DThanks everyone, it's good to know that so many people are dealing with it just fine and still doing what they like to do, so much of what you see is doom and gloom8 hours ago
GlennD

GlennDanswered the question Ready for a new adventure?

B2 Holy Night? D3 Swept Up?

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question Can COPD be definitively diagnosed from a radiograph?

The definitive diagnostic tool for COPD is a spirometry test or a full blown Pulmonary Function test. Sometimes a CT scan is also done to confirm and add specificity to the diagnosis. X-rays can indicate some signs of COPD, but they aren't definitive. …

1 day ago

muddleaged

muddleagedanswered the question Do you use a fan when you feel breathless?

There are times when I like it. I found a little, rechargeable, usb powered "mini desk fan" that is exactly what I needed, and it's very quiet, but fairly powerful, and they say the battery will last for up to 9 hours if I need it away from a power …

1 day ago

clipper (Debbie)

clipper (Debbie)

Late Friday afternoon family from Maryland showed up in my driveway, about a 3 hr drive. I have to quarantine so I stayed on my porch and they stayed in the driveway. We visited for about two hours that way. Hugs would of made it better but it was wonderful to see them, especially the kids. We are close but because of COVID we havenโ€™t seen each other since Feb. 



1 day ago

Mackorea

Mackoreaanswered the question Difficulty breathing in the shower

I leave the bathroom door and shower curtain open and the exhaust fan going. The steam would cause SOB and I dreaded the shower. Now, I bathe rather than shower and it is not too bad. I find it much easier to breathe without the steamy shower running. …

1 day ago

Mackorea

Mackoreaanswered the question Do you use a fan when you feel breathless?

Yes, I use either a fan or an air conditioner when sleeping. I am now on fan only since the weather has cooled. I use the fan in combination with my two fluffy pillows. I sleep on my left side with my head elevated by the pillows. I seem to gravitate …

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

Good Morning Everyone. Another Day, Another Dollar, Another Day at the store. Have a Great Day...

1 day ago

Norso

Norsoanswered the question Can COPD be definitively diagnosed from a radiograph?

Well that's what they've done to me so far ...A chest x-ray and find me I have "chronic emphysemic changes" when I said I have mucus my doctor on the phone said you'll have copd too. All from x-ray.... However the more encouraging news is several (USA) …

1 day ago

WebDevDiva

WebDevDivaasked the question: Can COPD be definitively diagnosed from a radiograph?

Can COPD be definitively diagnosed from a radiograph? I just had a chest radiograph to see why my asthma was flaring up and diagnose bronchial pneumonia. They told me I have COPD and my asthma is flared

1 day ago

edpe77

edpe77answered the question Is it okay toHave a glass of white wine

Since I'm an alcoholic, I don't do alcohol at all. Every condition I've had in the past 50 years would have had better/quicker outcomes if I weren't drinking or smoking! Alcohol interferes with Most drugs; smoking interferes with ALL body systems. …

1 day ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota answered the question Is it okay toHave a glass of white wine

I can't have any wine due to being allergic to the sulfites!!

1 day ago

das23

das23answered the question Ready for a new adventure?

A1....3 point shot-----Yea me!!! thanks for the help Ed

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question Is it okay toHave a glass of white wine

I've had COPD for well over 20 years, and I've been drinking wine and other things all that time. While I suspect there may come a time when it might affect my breathing, it hasn't so far. My FEV1 is in the mid 30s and I'm 76. I don't drink to excess, …

2 days ago

Edenwind

Edenwindanswered the question Is it okay toHave a glass of white wine

I actually looked it up and a person with COPD really should try not to drink alcohol as it interferes with normal functioning of lungs. No alcohol for me. I am in a pretty good place right now and donโ€™t want that to change

2 days ago

JeanO53

JeanO53answered the question Check in - A Change for the Better?

Hi Bronco78 - When each one of us responds to this kind of question, we are talking about our own experiences, and sometimes that can include very personal feelings. My belief is that no one should have to defend his/her experience or feelings. …

2 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.