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

1 month ago

Alph

Alphanswered the question Naturopathic Treatments for COPD

I was just about to ask the same question but used the search bar above and saw yours. There were a few threads that mention it, and im going back to search them. Im really thinking i may be plugged up

1 hour ago

edpe77

edpe77answered the question Masksโ€”who should wear them and how to get them?

I know they say masks are for protecting others...but I have to think you get some protection too! ed

4 hours ago

Lorrie State Captain of South Mississippi

Lorrie State Captain of South Mississippi

Hey everbody ! I see some of ya'ens are dealin with SOB here it's already summer ,  Hot and Humid.  With everthin goin on with my stomach and broken pelvis,  caint get back ta exercisin again yet. Ima stayin outside as much as I can tryin ta get my view of the beauty's of livin here , My plants await me takin care of em . I missed so many of our spring blooms in our year , so diggin em up and plantin round me . So I can take care of em in the mornins all summer . Blessin ta all of ya'ens as in many parts where ya'ens are are just wakin up from ya'ens Long winter naps.  Love ya'ens all very much and God Bless take care of ya'ens selves. 
Lorrie 

6 hours ago

HIcopd - Hawaii State Captain

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

Found some old plastic for transparencies that we can easily repurpose to make shields will have to make a special template to guide cutting out the little cuts for glasses earpieces one sample shield I made had huge cuts (my dexterity with Matt knife is …

6 hours ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question Have anyone tried this supplement: https://smile.amazon.com/gp/product/B06ZYS68PS/ref=ox_sc_act_titl

Nopeโ€”would check with my healthcare provider before adding it and spending the $$$ on this supplement. I feel like Iโ€™m already taking quite a few things my providers are having me take and no need to take more and possibly having an interaction between …

6 hours ago

BlairT

BlairTasked the question: Naturopathic Treatments for COPD

I wanted to check in with the group to see what experience people have had with Naturopaths. I went to see a Naturopathic doctor a couple times last year when I was struggling with initial diagnosis, and I am debating whether it is worth going to see him …

13 hours ago

JeanO53

JeanO53answered the question How many people are going outside with their POCs?

For me, the concern is not whether I am at a greater risk to get the virus. The concern is, as best as I understand it, IF I get the virus, I am at risk for more severe complications because my lungs are already compromised.

22 hours ago

edpe77

edpe77

2 members here have the distinction of living in the cleanest and direst cities in America. Hicopd - HI {Top 2} and me Warren, Mi @ #10 - year around particle pollution.

ed

1 day ago

Bonsville

Bonsvilleanswered the question How many people are going outside with their POCs?

That's interesting, Jean, that "Recent evidence demonstrates that people with COPD aren't any more likely to pick up the virus than other people in their age group with their co-morbidities." Doyou recall where you read this?

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question How many people are going outside with their POCs?

Using your POC is really no different than going outside and breathing. You run no more risk doing that than anyone else. Wearing a mask is to protect other people from what you might be carrying. They wear masks to protect you from whatever they're …

1 day ago

edpe77

edpe77

Pulmonary Paper just arrived... their annual POC guide is included. If your needs exceed 2-lpm then you probably require a CF unit. That translates to both increased weight and shorter battery time.  Personally I prefer my "E tank, as I don't fly. A tank weighs in at 5# and delivers up to 6-lpm w/each breath. While my concentrator is set at 3-lpm, I find that my tank set at 6-lpm barely keeps my saturation >92%! The problem is not every breath releases a puff of O2. I find myself frequently pressing the cannula to my nose, for a better seal. Also, I discovered that when wearing a mask each breath {mouth or nose} releases a pulse of O2.<br><br><br>These are expensive devices, if you're not on Medicare make sure you can try before you buy. Keeping in mind your O needs will increase w/time.<br>ed<br>

1 day ago

edpe77

edpe77

WOW!!! Dragon successfully launched and is now in orbit! Congratulations to Space X & NASA. Amazingly the main launch rocket landed on a ship at sea. ed

1 day ago

edpe77

edpe77answered the question Tubing control

After several hours my split loom is keeping my O2 tube from tangling. I'll keep you posted. ed

1 day ago

BlairT

BlairTanswered the question What is everyone doing during COVID19

Here is an example of something different I found to do this week. I used to love bicycling and even commuted to work that way until I developed COPD symptoms last year. I pretty well gave it up because all the best paths around here have steep hills, …

1 day ago

JeanO53

JeanO53answered the question How many people are going outside with their POCs?

Is it safe? I think we need to be twice as careful as everyone else in following the guidelines for protecting ourselves. If I'm doing that, I don't think using a POC puts me at a greater risk. In the past 11 weeks, I have been out a few times with my …

1 day ago

Bonsville

Bonsvilleanswered the question How many people are going outside with their POCs?

My pulmonologist says to ask the oxygen company, and Inogen says to just stay as far away from other people as possible.

1 day ago

Bonsville

Bonsvilleasked the question: How many people are going outside with their POCs?

How many people are going outside with their POCs now? Is it safe? The POC doesn't have any kind of filter on it.

1 day ago

Caroline

CarolineI have been thinking a lot about how we approach pulmonary rehabilitation and exercise in general.  With my background in corrective and adaptive physical education, I think that I may have a novel way of looking at exercise.   First of all, I look at what is the problem that you have.  One arm is larger than the other for instance.  Then I say how can we fix that?  Well, if you have no other issues which would prevent you from exercising, then we would double the reps on the smaller arm.  


The second part is the adaptive part.  In this thought process, we would determine what you want to do that your physical disability is not allowing you to do.  We would then either prescribe an exercise routine to correct the disability, or we would find a work-around that would allow you to participate in that activity.


To me, this is what pulmonary rehab should be about.  What are your thoughts?

1 day ago

Bonnie S.

Bonnie S.

Hi everyone 
I just found out that I have emphysema (for sure) today and a friend of mine through a quit smoking support group told me about this group. 
I am 64 years old and I smoked for many years (over 40 years) but quit almost 3 1/2 years ago (- 2 short relapses). 
I had a low dose CT scan done 3 weeks ago  but didnโ€™t get the full results until today.
Upper lobe predominant emphysema it said. My Dr. neglected to tell me the results during our virtual visit last week when I asked her if sheโ€™d gotten the results last week except to tell me that my 6mm lung nodule hadnโ€™t grown since my first CT scan last year.
3 days ago my results came through my on line medical records, and when I saw the diagnosis of emphysema below the 6mm nodule results I thought I was seeing wrong!!
I called my Dr.s office 3 times and they put 3 urgent notes to call me on her desk, and it wasnโ€™t until today that she called me and confirmed my diagnosis! I will be getting a new Dr. ASAP as I can not trust her any more with my health. I have been struggling for many months with health issues and even went to the ER twice thinking I was having a heart attack.
I also have high BP and high cholesterol and was just recently put on meds for them. 
Just knowing there is a valid reason that I have been feeling like shite is a relief and yet......
I already made an appointment with a pulmonologist for next Monday by virtual visit. I want to be proactive in my health and well-being .
I am glad there is a place to find support for copd.
Thank you for letting me vent๐Ÿ˜€

2 days ago

  • NewestOldestClick to View All Comments5 comment(s)
  • CarolineIt is such a great thing that you have quit smoking.  Welcome to the group.1 day ago
  • clipper (Debbie) - NJ State Captain Congrats on having quit. I was over on the old QuitNet site, itโ€™s close to 5 yrs for me. Good job quitting ๐Ÿ‘๐Ÿผ

    If you like the pulmonolgist maybe they can recommend a PCP, someone they know and work with.  Make sure both doctors stress the importance of exercise. If they are indifferent to exercise,  that would be a big red flag, at least in my opinion. 

    Exercise really is one of the best medications you can take. Your blood pressure will be more stable, your cholesterol will most likely go down and your emphysema might stabilize. Your heart and lungs will be very grateful. But you have to start safely so first talk to the doctors so you know your parameters. 


    COVID really complicates things. Ordinarily pulmonary rehab or even cardio rehab would be a great first step. The pulmonolgist can guide you on how to exercise safely in the context of COVID-19. Maybe there is a online or tele-health pulmonary program that they can recommend. 

    The right meds, the right exercise plan, and you can do pretty well even with the diagnosis. 1 day ago
  • Jean IA State CaptainThe CT scan certainly is indicative of emphysema, but until you have a spirometry or Pulmonary Function Test, you won't have a definitive diagnosis, and more importantly, you won't know how compromised your breathing really is.  You also won't know whether you also have chronic bronchitis as well as emphysema and how either or both have influenced your ability to breathe.  Until you know that, no doc is going to be able to adequately prescribe medications and treatments for you.  Given the current COVID-19 situation and depending on where you are geographically, it may take awhile before you can actually get tested, but that's one of the first things to discuss with your new pulmo.


    Clip is absolutely right, once you have an appointment with the pulmo, virtual or in person, you need to plan on discussing an exercise program.  Docs can prescribe medications that do treat the symptoms, but exercise is the only thing that will actually help your heart and lungs become stronger and more efficient and only you can do it.   If you want ideas about how to start and what goals to set, come back and we'll be happy to help.


    The last thing you need to do is to begin learning about your chronic condition.  I would suggest that you go to the "learn more" tab above and begin going through each of the topics there.  The material has been written and vetted by some of the best pulmos in the world, so it's absolutely true based on what we know today (like most things, we're learning more every day and things change).   The more you know and understand about your chronic condition the better prepared you are to manage and control it rather than let it manage and control you.1 day ago
edpe77

edpe77

COPD is one crazy condition. For the last few weeks breathing the AM hes been difficult, frequently needing my rescue inhaler before noon. Now, the last couple days I've been going 6-7 hours before needing my rescue puff. Note, yesterday it was both hot and high humidity, today cool and low humidity. ergo it must be my body. Go figure!
ed

2 days ago

HIcopd - Hawaii State Captain

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

In case folks are interested, hereโ€™s info in making simple face shield with plastic and your glasses (or sunglasses). https://www.google.com/amp/s/www.dezeen.com/2020/04/16/tokujin-yoshioka-coronavirus-face-shield-design/amp/ I took the seams out of …

2 days ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota answered the question What is everyone doing during COVID19

Out a few times to hard to breathe with mask so stay home a lot into a exacerbation again so was sent to ER anyone with breathing issue is being sent to there away from the clinic rapid test was negative. More leviquin and pred evil both of them. I love …

2 days ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Check in โ€“ Class of ????

das23 More specifically Chestnut Hill, (Boston College) just down Commonwealth Ave from KKK Katy's. I can remember standing outside the door waiting to get in talking to the bouncer like it was yesterday. I also spent way too much time in my two …

2 days ago

Stephanie Williams, RRT

Stephanie Williams, RRT

Hi Kaya - just hoping you are doing well. Miss seeing you on here!

2 days ago

Kelly Clarke

Kelly Clarkeanswered the question What is everyone doing during COVID19

I am starting to learn calligraphy! It passes the time and can be quite relaxing :)

2 days ago

Kelly Clarke

Kelly Clarkeanswered the question Check in โ€“ Class of ????

Class of 2012! Almost 10 years.. time flies! Found this in my grandma's wallet. Sadly, she recently passed away. It is so nice knowing she carried me every where she went! Have a lovely weekend everyone.

2 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.