Bill Clark - Community Manager

Bill Clark - Community Manager

IMPORTANT REQUEST!


The COPD Foundation has been getting reports of possible shortages of Oxygen Equipment, specifically home concentrators) due to demand resulting from Covid-19. We are now in the process of determining if these shortages exist, and if they do , is it regional or national. We are asking our community if they have experienced any issues in regards to oxygen equipment or supplies along with the details of the problems they experienced. 


We are also asking that if you have the occasion to speak with your provider, ask them if they are experiencing any problems with getting oxygen equipment and supplies. If you have information, please contact me at wclark@copdfoundation.org. Our concern is that this might represent an ongoing danger to our community as well as those who might require oxygen therapy as a result of Covid-19.

1 day ago

  • NewestOldestClick to View All Comments4 comment(s)
  • Jean IA State CaptainNo problem from Lincare here in W. Des Moines, and according to the office manager, no problem for Lincare nationwide.  I have no idea how accurate that statement is, but that's what she said.  My experience with her is that she's usually right, for whatever that's worth.22 hours ago
  • CarolineI spoke with Inogen last week and they told me that my order would take longer than usual because they were having a hard time keeping up with the demand.  I needed my sieve tubes replaced because I have used the new ones for less than three months and I was getting the low oxygen warning.  The representative said that the tubes had a life of 30 days after the warning.  He said that I should receive the order long before the tubes expired.18 hours ago
  • Ken WI have decided to purchase a high flow home concentrator for use when exercising. I called a number of concentrator suppliers regarding a specific model and all were out of stock and on backorder. I ended up with a company I have used previously, they are national and they have good service, etc. They spoke to Philips, It is a Millenium 10 and the current lead time is 6 to 10 weeks. I am a Lincare customer for Liquid but wanted something a little easier to move around in the house as I use Liquid primarily for out of house usage and keep the tank in my garage. They died have a few other brands in stock but not all of them.4 hours ago
Bill Clark - Community Manager

Bill Clark - Community ManagerEveryone
living with COPD should be tested for alpha-1 antitrypsin deficiency. It can
affect the care and treatment you receive. Watch this animated video to learn
more about Alpha-1 and what you can do to get a free screening kit.






https://www.copdfoundation.org/What-is-COPD/Understanding-COPD/What-Causes-COPD.aspx

1 day ago

Bill Clark - Community Manager

Bill Clark - Community Manager

A Note to the community
about the discussion of politics





When I first approached this topic a few years ago, it was an
election season and we did not have near the membership we have now. The reason
for the original post was to lay down the ground rules regarding political
discussions on Social. COPD360social was started to provide a safe place for
those affected by COPD to gather information, ask questions, provide answers,
support others and to let others dealing with COPD know they are not alone. As
the site has evolved we have developed a community and in many case valued
friendships. If we allow discussions and posts to evolve into political
discussions we could well become as divided as our country seems to be right
now. This is not acceptable or who we are as a community.





We all share one thing no matter our race, religion, sexual orientation,
or political party affiliation and that is COPD. I realize that as members
sharing the same health challenges, we might tend to be more passionate about
issues and politics affecting our health, but discussion of politics will only
alienate and divide and we honestly can't afford the distraction.





We must remain focused on the reasons we came to Social in
the first place...to better our lives. We did not come here to voice our
politics. Politics has divided our country, our families and our friends, we
will Not let it divide our social community! If you want to discuss politics please
find a forum that is designed for that purpose.





Mentions of individual political persons, party or media be
it praise or criticism will be cause for the post to be removed. Continued
violations will result in removal of the member. The next few months is going
to be difficult for all of us. Let's just be kind and look out for each other,
because together we will get the answers we all

2 hours ago

Jane Martin

Jane Martincommented onNTM Lung Disease: Support Resources and Research and What you Need to Know

 Were you aware of NTM bacterium and NTM Lung Disease before the blog posts, videos, and webinar found here?...

4 hours ago

Jane Martin

Jane Martincommented onNTM Lung Disease: Treatment and Management and What you Need to Know

 Thank you, Carla, for this comment. The team approach practiced in your program, including work done by exercise physiologists, plays a big role in a patient's progress -- and success -- in PR! Thank you also for letting us know that you and your...

4 hours ago

Bret99

Bret99Good Morning! Did you catch part two of our COVID-19 Q &
A session on Facebook Live last night? Stephanie Williams spoke with Drs. Byron
Thomashow, Barbara Yawn and Valerie Press. You can watch a recording here: https://www.facebook.com/watch/?v=747563209369206 

5 hours ago

goldencarla1

goldencarla1commented onNTM Lung Disease: Treatment and Management and What you Need to Know

 I agree the EP sets up our pulmonary rehab patient weekly exercise along with the respiratory therapist and RN. We discuss the patients progress and move forward for the next week. I wanted to let you know that we weren't aware of NTM and the...

6 hours ago

MRod88

MRod88

Hey guys, 

I was just wondering if anyone ever found themselves in the same situation.

I'm 32, smoked on and off about  7 out of the last 10 years about 2-3 packs a week. Exercised regularly and ran throughout. Recently I was in an accident where I broke a rib that made me realize my breathing was not the same and has not been the same since even before the accident.

I've been waking up slightly dizzy for about a month like i didn't have enough oxygen during the night. I stopped smoking and drinking completely a month ago and I feel better but I still have a hard time getting deep satisfying breaths without yawning or really forcing it.

I bought an oxymeter that shows me at 98-100% even after running. Only dropped to 95% after a sprint. I have no cough, never did, no mucus. I am at complete loss.  Can it all be anxiety ? Can it be "just" fibrosis ? How can I test for that ? I have a "weird nose" that is stuffed 95% of the time and I have been to known to snore very heavily and choke and wake up gasping in the past. Should I get a Cpap machine ? 

15 hours ago

  • NewestOldest
  • JeanO53Hi MRod88โ€‹โ€‹ - I suggest you talk with your doctor about scheduling a few tests.  Have you had any Pulmonary Function Tests since your accident?  If not, it would be a good idea to get a good assessment of how well your lungs are functioning.
         It does sound like you may have sleep apnea. Usually getting a CPAP machine requires a doctor's prescription. You'll need a "sleep test" to measure what's happening when you're sleeping. 4 hours ago
  • MRod88Thank you for your response4 hours ago
  • Jean IA State CaptainTalk with your doc about your complaints.  Ask for a spirometry  or Pulmonary Function Test.  Talk about your sleeping and snoring; a sleep test may be in order and that will tell you whether you need treatment for it and give you some alternatives for treatment.  A c-pap is only one alternative and may  not be be the best one for you.  Talking to your doc and getting tested is the only way you'll get answers.3 hours ago
edpe77

edpe77

COPD can be a <br>condition of extremes and opposites. Yesterday I was "suffocating" while<br> my O2 stats were > 95%! Today, even though my O2 tube was chewed <br>thru {the joy of puppies} sometime during the night, and My O2 around 91%, I felt good. This <br>was complicated by the fact that I had 2 Dr appts. That can lead to an <br>anxiety attack, which causes SOB. I fixed the O2 tube, stats returned to<br> normal an I was filled w/energy today. Go figure! ed

17 hours ago

  • NewestOldest
  • Ben AGiven the current state of affairs in the world, my stress-related asthma has been through the roof recently, and I've found myself SOB far more often than normal.  Each time I find myself gasping for breath, I pop on my oximeter and discover my O2 between 95 and 98%.  It's maddening.  16 hours ago
  • Stephanie Williams, RRTIt really is strange, and I wish there was some way to become better predictors of how you will feel based on O2 sats, HR, and other metrics.  Stress, changes in weather, and puppies eating O2 tubing will always be the wild cards, I'm afraid. It is good that you are full of energy today, Ed! ๐Ÿ˜Š5 hours ago
  • MobalI feel for you Ed. These humid Gulf coast summers are tough on me.  When we do get the rare summer high front to our North West (Results in wind from North) our humidity drops and I feel I can do just about anything.12 minutes ago
Margie ONeill Maloney

Margie ONeill Maloney

Hello all! Iam trying to find recent information regarding bloating! My stomach is so distended! I have apnea and sleep with a cpap nightly, I DO NOT breathe in my nose and out my mouth, I walk around like Iam huffing and puffing and breathing strictly in and out of my mouth, then I catch myself and try to refrain from doing that but within seconds Iam unconsciously doing it again and again catch myself! I realize smaller meals will help, but after I eat, whatever the size, I am miserable, and my stomach is so bloated! What about liquids? Water is ok and doesnโ€™t cause bloating, but I drink so much sugar free water enhancing flavors that you add to your water, perhaps sugar free/ additives are doing havoc with out stomachs?  I do need to look into foods to avoid, itโ€™s such a awful feeling...... thanks all....

18 hours ago

  • NewestOldestClick to View All Comments5 comment(s)
  • Jean IA State CaptainCheck out the information on Learn More and look for the entry on nutrition for people with COPD.  Scroll down until you see the tips for reducing bloating.  My guess is that part of your problem is what you're eating as well as how and when you're eating.  I'd  trash the fruity flavors for water and just drink the plain stuff; that might help.   The other thing you might try is waiting to eat until you actually feel hungry and then only eating until you feel full but not bloated.  If you do go for smaller meals, be sure you keep them balanced.

    As for being a mouth breather, that really shouldn't make any difference unless you're actually swallowing air.  You might ask your doc to refer you for a swallow test and talk with the speech therapist who usually does that sort of thing about swallowing air.  That could be a problem, but once you realize what you're doing, it should be fairly easy to stop.18 hours ago
  • Margie ONeill MaloneyCaroline.. I did, and thatโ€™s why I stated recent. Maybe I was doing something  wrong, but I was finding info from 5 years ago. But thanks for the heads up!15 hours ago
  • Stephanie Williams, RRTIt is true that the foods you are eating may be causing bloating, but you could also be swallowing air from your CPAP machine. It might be worth calling your DME or the company where you get your CPAP supplies and ask for a chin strap to help keep you from gulping air while you sleep.4 hours ago
DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Hello friends! It is darn scary here today. This storm has completely battered and destroyed our property. I am literally shaking like a leaf. Since before 2:00, the winds are horribly strong. It is almost 6:00 now. I hope this ends soon. We had 7 huge trees rip out of the ground. One landed on my husband's boat. I am not letting my dog go outside until this wind dies down. The power has been flickering on and off for hours, but we haven't lost it. Luckily, our electric lines are underground. ๐Ÿ˜Œ I honestly don't think I'll ever be the same again after this. I am grateful to be alive right now. ๐Ÿ™

20 hours ago

Palcarrie

Palcarrie

Another good Q & A session by our three doctors. Thank you, Stephanie!

20 hours ago

Kristen Willard

Kristen WillardDo you know the difference between a COPD exacerbation and
the symptoms of COVID-19? Get the answers to this and other questions today at
5:30 pm EDT on our latest COVID-19 Facebook Live presentation with Drs. Byron
Thomashow, Barbara Yawn and Valerie Press.

Join us on the Foundationโ€™s main Facebook page at 5:30 EDT and the
presentation will begin. www.facebook.com/copdfoundation Please share with your friends!

23 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Jane Martinโ€‹
Just wanted to comment on your post in Gratitude. 
I had written: Thanks for sharing, Jane Martin. You certainly do have alot to be thankful for! ๐Ÿ˜Š
The Save button in Gratitude is not working.....

1 day ago

Jane Martin

Jane Martincommented onThe EveryDay Health Guide to Living with COPD In an Era of COVID-19

 Thank you, Bret, for this article and links to the resources!...

1 day ago

edpe77

edpe77

One down and one to go. Dreaded going for toenail clipping. Usually leave w/sore toes, considering it's been a couple months over due, expected the worse. They picked me up at the car, she cut my nails and wheeled me back to my car.


Next appt is in about an hour for my glaucoma, with dilation. Fortunately it's cloudy today.   ed

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

4 years ago I honestly thought I would not make my 50th Birthday. I had major issues walking up stairs or around the block that was about a mile or so, I would struggle breathing, had issues with all the medications the Doctors put me on and I couldnt think clearly from the panic and would have to ground myself or  could barely function. I started to remember my commutes to NY especially driving to Queens NY, I started getting into motivational speakers, one morning I was listing to Zig Ziglar around the mid 90's and him saying "The only thing stopping you is you!" I reflected on that as much as I could these past couple of years and with all my trial and errors over the past 4 years, I did something I never thought I would do again, On August 2nd this year I ran 7.8 miles for a duration of 103 minutes straight, here is my proof and conclusion "IMO" You can see all the Top Docs, Dieticians and Fitness Trainers or Mental health coaches you want and no matter what it all starts with You and ends with You. Making sacrafices and sticking to your plans. Your plan is not a fad, it is not a diet, its a lifestyle change. While I was running on Saturday, I kept thinking about the Alex Trebek commercial  with the 3 Ps Price, Price, Price if anyone has heard it? I came up with 3 P's of my own that you should avoid eating, Pizza, Pasta and Pop Tarts, Im still on my inhalers, but I have 15% or better breathing doing the low carb lifestyle, believe me it works wonders. Love you guys Bill66

1 day ago

Ken Benson-Ca. state captain

Ken Benson-Ca. state captainMuch of wisdom is common sense with a fancy name.

1 day ago

edpe77

edpe77Finally a readable rebus.    ed

1 day ago

JeanO53

JeanO53

Took my car into the shop today; needed new tires and needed the a.c. checked because it stopped working last week.  I was very pleased with their set-up; everyone was wearing  masks and practicing physical distancing; seating was available both inside and out. The wait time for me was about 2 hours.
     About mid-way through, a customer service rep., one I knew from past visits, sat down to talk with me about my options for the a.c.  He asked how Iโ€™d been doing, which lead to a very interesting conversation about face masks and Covid.  Heโ€™s someone who just doesnโ€™t believe that itโ€™s as serious as โ€œtheyโ€ are saying it is.  This is the first time Iโ€™ve had a chance to talk with someone 1-1 who thought this way, so was very interested to hear his thinking.  His disbelief is primarily because of all the mixed messages and false messages that have been โ€œout thereโ€ for the past 6 months, I.e... the โ€œpoliticsโ€.  He doesnโ€™t know anyone who has been effected.  Heโ€™s also someone who has been in and out of 20+ cars that have not been sanitized 5 days a week since this has all started and he has remained healthy..  His wife works at the same place so they have similar exposure.  He wears a mask at work because itโ€™s required, not because he thinks itโ€™s a good idea.   Bottom line... he just doesnโ€™t believe itโ€™s that bad.
     So.... I left thinking a bit differently about the folks who are choosing to ignore the face mask mandates. There are those who donโ€™t want to be told what to do.  And then there some, who like this young man, just donโ€™t believe what they are being told.   
     I think this leaves the U.S. in quite a mess.


1 day ago

  • NewestOldest
  • JeanO53I told him that I was following the โ€œscienceโ€ and not politics.  He did say he thought Dr. Fauci tried to get good info out there.  My brother, who is a โ€œMensaโ€ type, told me he thought there was just too much confusing information out there.     Iโ€™m not sure why folks arenโ€™t able to block out the โ€œnoiseโ€ .  
        I think itโ€™s been very  clear and consistent from the start... Masks, physical distancing, washing hands, donโ€™t touch face.  Then again, my life depends on not getting it,  so... 1 day ago
  • edpe77Great discussion Jean. The mis-direction by our politicians has been a great dis-service to this country.  ed1 day ago
DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captain

Good afternoon! It is 95 degrees here! ๐ŸŒž๐Ÿ”ฅ 
I found out that I do need new eyeglasses again this year. I am happy that I do not have glaucoma. The doctor did say that my risk is greater due to the fact that I have been on Prednisone long term. I cannot afford new glasses right now. Hopefully, those stimulus checks will cone through! ๐Ÿ™
My lung specialist seemed a bit sad that my lung disease is as bad as it is. We are trying to get me off the Prednisone. This constant, extreme heat has been hard on my health. Also, I have severe, uncontrolled eosinophilic asthma. My doc had a plan. He wanted me to try Daliresp. It is an add-on medication. I do not wish to use Fasenra at this time, so this is the only alternative. I do have to watch out for severe weight loss. I started taking it on Saturday.  I am going to keep on going-keep on moving forward! ๐Ÿ’ช
Tomorrow at 7 am, I go for bloodwork. 

1 day ago

Lorrie State Captain of South Mississippi

Lorrie State Captain of South Mississippi

Great Monday mornin ta y'all 
Wow the heat has been Whoopin everbody's butt round here . Well our school district has decided ta send the Teachers and Kiddos back inta the class , with what ima gonna say is with not a very good plan . My Daughter is a Teacher and responsible for everthin right down ta buyin all disinfectin supplies , and doin all the cleanin . She called me Saturday night and I knew when she called she needed sumpin cause that's just how her and her Husband are , Well I cain't believe,  they are wantin us ta watch the girls and take em ta school.  I don't understand why they cain't get it through their heads , That LIL OLE ME AND HUBBY ARE HIGH RISK , and that I almost died from gettin Strep from them when they were Baby's in 2017 that left me on Oxygen and now with COVID they want me and my hubby ta risk our lives again.  How can this be ok or does she just not give 2 cent's about me ! There is a Mother inlaw that is in better health,  why not her . My Daughter says ima not askin ya'ens ima wantin Daddy ta do it , why is that ok ? The girl's would be here each mornin , round me like what is so hard ta understand,  those girl's love me and wanna hug and kiss on me . God I hate COVID  .  I don't wanna  leave or have anyone I love leave this world away from family locked away and all alone.  
Love ya'ens 
Lorrie ๐Ÿ˜ฅ๐Ÿ˜ช

2 days ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

Good Morning Everyone... hope all is well with everyone? 

2 days ago

Grandma05

Grandma05

Good morning all, last year I had ct scan which picked up lung nodules and emphysemous changes.
Iโ€™ve been seen by pulmonary specialist and given another ct scan and spirometry test.
The results show unchanged nodules and unchanged emphysema changes.
On his last report he stated I had preserved lung function and my spirometry test was 86%.
If I had continued to smoke in the last 6 years he said Iโ€™d be in a worst state health wise. He reported minor emphysema with no symptoms and hopefully if I keep active it could remain as such.
Iโ€™d like to thank you all for your comments in the last year and wish you all the best xx

2 days ago

daybrac

daybrac

i just joined here not sure what in doing all i know is im scared to death more everyday i cant breath

2 days ago

edpe77

edpe77Having difficulty uploading JEPG files. In :Questions" the Drag photo icon is missing. And here it's hit or mis.
Below another rebus.  ed

2 days ago

Grandma05

Grandma05

Does anyone know the meaning when they say โ€œpreserved lung function โ€œ

3 days ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

Happy Sunday Everyone!

3 days ago

perkyH

perkyH

I'm doing great........had 3 Zephyr valves put in my upper left lung......Dr. Criner showed me the difference of my long before and after.......it was amazing.........I have not been SOB since I came home...  I'm  so happy and blessed..... so very happy i did this!

3 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.