Bill Clark - Community Manager

Bill Clark - Community Manager

The COPD Foundation is offering a free webinar on Friday,
February 28, 2020 at 2:00 EST for community members to learn more about NTM
lung disease and how it may affect people living with COPD. Follow this link to
register for this insightful webinar so you can understand the signs and
symptoms of NTM lung disease and what to watch for. http://bit.ly/2UuLHHQ

1 week ago

MM4

MM4answered the question Weak feeling in legs

I've had this happen after a day where I overdid it and my sats probably weren't super great. That's my cue to rest and let myself recover before tackling anything too physically exerting.

1 hour ago

Kandy State Captain of South Dakota

Kandy State Captain of South Dakota

Just seen Orlan post late afternoon he had a heart attack is in the hospital  I guess he had some stints put in too. Didn't know if anyone knew this 

1 hour ago

  • ksuznOh no Kandy, thank you for sharing the news. I hope he is doing ok. ๐Ÿ™๐Ÿ™๐Ÿ™25 minutes ago
tomtom

tomtom

Iโ€™m gonna have to look. 

3 hours ago

Caroline

Carolineanswered the question Weak feeling in legs

Check the side effects of Ambien. I had a few doses of the stuff and could not make it to the bedroom from the kitchen without getting dizzy. I decided it was doing me more harm than the problem going to sleep. Now I just take 2 Benadryl when I have …

4 hours ago

Caroline

Carolineanswered the question My Zephyr Valve journey

It makes me very happy to read your posts and know that you are getting along so well after your procedure.

4 hours ago

Bridgette Madison

Bridgette Madison

I'm having a hard time breathing

5 hours ago

Jtreyo

Jtreyo

hi guys I really need some advice I am very scared and I need to know I'm having bad anxiety. ok so since September now so for 5 months I have been coughing up phlegm every single day like all day long I cough up phlegm. at first it was green and yellow but now for the past few days its been like dark grey or light grey and even a rusty brown sometimes I'm sooooooo scared. 


I have noticed that its harder for me to breath like I can't get whole sentences out when I am talking but my anxiety is so bad maybe its because I am now thinking of my breathing all the time. I went to the hospital they did a X-ray of my lungs and they said it looked normal the doctor listened to my lungs and said it sounds clear and no cracking so they just gave me antibiotics and said its probably just chronic bronchitis. but idk if you all remember about 8 months ago I had a pft test done and it was normal but did show a very mild obstruction wich said its mild copd.. but my doctor said he didn't believe I had it he said he thinks that's just from smoking and being out of shape so he didn't diagnose me with mild copd even though the pft test suggested it.


but I didn't have this phlegm stuff when I was taking that pft test.. so my question is so since I have been coughing up this phlegm for 5 months now and its not going away and I'm defiantly having some troubles breathing when just talking does this mean I have copd?? does this mean I'm going to die in a few years?? I just got offered an amazing job and was very excited this job is good for my kids and my future but now I'm freaking out thinking its to late and now I'm gonna die soon from copd.. I'm scared I'm freaking out I can't go to the doctor until my insurance starts wich is in 90 days that's why I went to the hospital. so what does this color of phlegm mean and does this mean I'm dying soon?? does this phlegm mean I have copd??

5 hours ago

Forgeti5

Forgeti5

โ˜บ Breathing good inspite of bowl
Of ice cream for friends birthday party.  Finally got my clothes all hung in closet and socks in drawer.
Shower tonight helped soothe sore
Muscles.  Hope all have a good night. I will sleep tonight for sure.
Kaya โ™ก๐Ÿ’ƒโ›บ

5 hours ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question My Zephyr Valve journey

Discharge papers :) I am so happy it went well for you. Keep us posted as to how your breathing feels with the valves. I understand it can take 3 months (?) before you feel the full benefit. Exercise will be a good barometer.

7 hours ago

Forgeti5

Forgeti5

โ˜บWe have snow finally. Should stay around for pictures tomorrow. 
Left knee giving out on me today just walking across floor, no steps this time. Haven't been able to be
As independent as I like today because of chance might fall. Kaya ๐Ÿ’ƒ๐Ÿšด

7 hours ago

Catfinger77

Catfinger77answered the question My Zephyr Valve journey

Thanks for your posting about your procedure. I may be doing this myself soon if my CT scans come back showing I'm a good candidate.

9 hours ago

tomtom

tomtom

Today I fell asleep while watching tv. I took a break from my mandatory 3 lpm O2. My sats were 94-95 as I sat on the sofa. I felt good and dozed off. When I awakened I checked my O2 and it was 82 but climbing. I stood up and it reached 92. Still without oxygen. It got my attention and I immediately put on the cannula. Which brought me to 98 while sitting. 


Can anyone tell me what this is ? And by the way, I could not tell or had any signs that my O2 was 82 except that my oximeter showed 115 bpm. That I understand 

9 hours ago

Jamie Sullivan

Jamie Sullivan

My daughter and I have a daily tradition of asking Alexa "what special days is it today" each morning before the bus. Today may not be "Fluffy Friday" but it is "National Love Your Pets Day!"  To celebrate here is Leah with Chia!  She is in love with this cat and sometimes the cat may wish she had a bit less love to give (or fewer cat hugs) but sometimes I catch a moment like this. :)  Hope you are all having a good week!

9 hours ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question My Zephyr Valve journey

I too have very Long lungs, thanks for explaining the major part of shortness of breath, is hyperexpanded lungs part of the criteria? I was around 48 had a lung xray at the ER and the ER Doctor had to take 2 xrays and actually called a Pulmonologists on …

14 hours ago

annie wi

annie wianswered the question When to go on regular prednisone?

My last pulmonologist would give me scripts for prednisone, and antibiotic to use if I felt I needed it. The new lung doctor (teaching hospital) requires I be seen, and somebody listens to my breathing. It ends up I didn't need all that medication, or …

14 hours ago

2cents

2centsanswered the question My Zephyr Valve journey

Had a conversation with my Dr this morning. He laid out some of the criteria he used for determining who would make a good candidate for the valves. It's not all medical. After all the tests were done, he chose me because of the commitment I have to …

14 hours ago

Twinburl

Twinburl answered the question Weak feeling in legs

I checked my pulse ox and it was 97. I did wake up a bit more short of breath than yesterday so Iโ€™ve did a few puff on my rescue inhaler and am feeling a tad better. I did take Ambien last night so thatโ€™s the reason for the second question this morning …

15 hours ago

Caroline

Carolineanswered the question Weak feeling in legs

For me this feeling in my legs is usually an indication that my oxygen saturation is too low. Do you have an oximeter? I would contact my doctor as well because this can be a sign of poor circulation as well.

15 hours ago

Jean IA State Captain

Jean IA State Captainanswered the question Weak feeling in legs

if this is a new feeling, you should talk with your doc about it. What did you do yesterday that was different and might account for it? Did you do something different or something that really used the muscles in your legs? You might tlak with your doc …

15 hours ago

sweetpeach63

sweetpeach63

Hi everyone, I'm new and I'm very excited to be here. I have been on oxygen and Trilogy  CPAP for several years now. and I recently lost my medicaid and now all I've  got is medicare for my primary and secondary, I didn't know this till recently. I guess my Medicaid ended in September and with the move to my new house I guess I didn't get the letter that let me know this back in October. But now all the bills are coming to me in big amounts. There is nothing I can do is pay the hospital and doctor bills, but I got a bill on my oxygen concentrates that is so reridiculous, I'm not able to pay for it.  I can't afford the monthly payments on it so I'm afraid that I have to give up my concentrate machine and all my oxygen tanks because I can't afford to fill them. I'm on disability and on a fixed income. The reason my medicaid was expired is because I now have an partner., we are not married but because of his income and we are buying the house together, they consider his income which he can't afford my medical supplies with paying mortgage and bills. If someone can help me find where I can get a cheep oxygen concentrate or free would be a dream. I am in such a mess because I don't think I can go a night without my oxygen.

16 hours ago

Twinburl

Twinburl asked the question: Weak feeling in legs

Iโ€™m still pretty new to this so sorry for the my second question of the day so early 🤪 I woke up this morning got out of bed and my legs feel so tired like I just did an elliptical

17 hours ago

Twinburl

Twinburl asked the question: Rheumatoid Arthitis meds and meds to help you sleep

I was just wondering if any of you guys have Rheumatoid Arthritis and if so what meds do you take? Also wondering about meds that help you sleep such as ambiem those types of drugs.

18 hours ago

ksuzn

ksuznanswered the question Prednisone - How much is too much of a good thing?

This is an older question but Lungguy recently posted some links on length of treatment for exacerbations that might be helpful: https://www.copdfoundation.org/COPD360social/Community/Questions-and-Answers/Prednisone-Usage-Concern.aspx

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain

I had a wellness visit with my Doctor today, I had to sign a paper that stated the only reason I was there was for exactly what the visit was for, nothing else, if you address topics with Doctor that are not related to the wellness visit or whatever your visit is based on you or your insurance may be charged? I'm guessing this ensures the Doctor can't get tied up with one patient or you will be charged accordingly.

1 day ago

Dhvac

Dhvacanswered the question Full pft vs Spirometry

so all being said can a pft actually narrow down disease or no disease ? Meaning if Fvc normal(higher than 120%) fev1normal (102%)and all other measure are normal range except Fvc/fev1 ratio could they say for certain someone has copd or doesnโ€™t? mainly …

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question Prednisone - How much is too much of a good thing?

I agree Ben, life was better with no Doctors, now its one thing after the other. I mess my knee up and get diagnosed with an inflamed bursa and torn meniscus and they want me to see a cardiologist to make sure there's no clot. Sometimes you just have to …

1 day ago

Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question Prednisone - How much is too much of a good thing?

My Pharmacist said around 10 days to 2 weeks is the norm or short term. She said its always good to discuss this in detail with your doctor.

1 day ago

edpe77

edpe77answered the question End stage. What to expect. And how long left.

I just listened to Noah Greenspan's palliative care discussion. Basically they said you should consider palliative care when you feel you need tu further releive symptoms. Consider: PALLOIATIVE for the best care of life; while HOSPICE is the best care …

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question Full pft vs Spirometry

As Sassycat explained with spirometry: after albuterol treatment increases of โ‰ฅ12% and โ‰ฅ200 mL from the baseline FEV1 indicate asthma. But it can get โ€˜fuzzyโ€™. There are other tests they can do to diagnose asthma. One test is a methacholine challenge, …

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question Full pft vs Spirometry

A PFT includes spirometry, lung volume testing and gas exchange testing. It does indicate obstructive disease; emphysema and chronic bronchitis are both obstructive diseases. often a CT scan will be ordered to get a better feel for areas of damage.

1 day ago

RobinC

RobinC

Hi I was told about 7 hours ago that I have early COPD (by phone from the receptionist) and as yet have not spoken to my doctor! So I guess Iโ€™m just daft cause most things online are contradictory, I get that I need to stop smoking, but can I really slow the progression by doing that, exercise more and eating better? Sorry Iโ€™ll probably just wait till I see the doc!

1 day ago

  • NewestOldestClick to View All Comments9 comment(s)
  • RobinCThanks everyone, I had the pft test after suffering a punctured lung. As yet I have not seen anyone but am off to the nurse so will know more soon.


    I can at least reassure my wife as the sites she saw just talked about stage 4 and it freaked her out.


    Iโ€™m in the uk so it probably works different here, but again thank you for your comments.17 hours ago
  • Klee
    Hi Robin,  yes any smoke can progress the disease.. what started mine (although unknown, undiagnosed then) was renovating a house although using a dustmask it was not a P@ nor fit so sanding floors .. turned asthma into full on.. wood fires.. inside and then I lived in the bush where we cleared land into big bonfires (also as a kid  parent used to smoke in care with windows up and passive smoking or second hand smoke can damage lungs.. its all about the small particles getting deep into the lungs.


    so stopping smoking is very important and not breathing in others.
    what progresses the copd is inflammation in the lungs.. irritants.. so car fumes/pollution, dust/ smoke/ infections/ etc..
     so I lost over 20% with bacterial pneumonia 5 years ago.
    took me a year to recover, be able to walk properly and longer and longer distances..  had a few  flare ups.. managed with steroids and anitibiotics.. 
    relatively well. 2018 lung function was 33% so stage 3 severe.. 
    I'm in Australia and had 6 weeks bushfires  everywhere so air was smoky everywhere.. came inside etc.. I have been sick for over 4 months.. I won't have another lung function test. until I can walk and get my capabilities of doing stuff up again.
    but I'd say I'm in stage 4.. but again.. these are guidelines.. and people can live for years. 
    now my advice is this. don't panic. but the earlier you deal with it the better.. ie see a lung specialist.. get a copd action plan.. (it will educate you so you can learn how to save your lung function as much as possible..
    exercise muscles  make oxygen more efficient.. 
    have a plan (action plan ) if you get flu or unwell. being in the UK.. there are some good blogs.. I think you guys seem to have the best care? maybe not everywhere..
    be well.  stay/get strong.. 9 hours ago
  • Klee
    I forgot to add.. I smoked since 10 years old.. some evidence says lung tissue is still forming up until 24 years old. so early damage can affect lung formation? 
    a study just came out that the bushfires will affect kids lungs.. 
    Australia has always had bushfires (can't remember it this bad though) so I was exposed to my smoking.. passive smoking in home/car/schools/doctors smoked next to hospital bed. etc. 
     I started coughing up blood @ 45y.  had a lung biopsy..  did cold turkey .. first attempt at quitting.. I read a lot first on tips to quit that helped get me through.
    It's been 10 years. everybodys lung damage is different and unique.. regardless of what stage they are @.. it's been 10 years since I became a non smoker.
    the smell of it makes me nauseous.. never have a craving..
    I can safely say I would be dead if I di not quit smoking.. it is not your friend.
    9 hours ago
Bill66 - Bill Wornstaff NJ State Captain

Bill66 - Bill Wornstaff NJ State Captain answered the question Prednisone - How much is too much of a good thing?

I know it definitely depends on if its short term high dose or long term low dose. I know for a fact the Pharmacist's at CVS advise against long term at any dose.

1 day ago

VEM

VEM

Trying to recover from pneumonia. Have stage 3 COPD.

1 day ago

Sassycat

Sassycatanswered the question Full pft vs Spirometry

Yes, full PFTs are important. They look at gas exchange, and that can be an important component of COPD if your DCLO is impaired. A full PFT also looks at lung volumes, and show if you are trapping air, etc...So yes, there is important information in the …

1 day ago

2cents

2centsanswered the question My Zephyr Valve journey

I've got to say that this has all been quite an experience for me. I'm very surprised and even a bit shocked at some of it. I did a lot of research before I agreed to the procedure, I know the hospital well, and trusted that my Dr knew what he was doing. …

1 day ago

Dhvac

Dhvacanswered the question Full pft vs Spirometry

hopefully someone with knowledge on subject will be along 🤷🏻โ€โ™‚๏ธ

1 day ago

Ben A

Ben Aasked the question: Prednisone - How much is too much of a good thing?

In mid-January, my pulmonologist prescribed a course of prednisone to counteract the side effects of Plaquinel (prescribed by my rheumatologist for my arthritis). Yesterday my rheumatologist prescribed a tapering course of pred for my arthritis. I know …

1 day ago

NowWhat

NowWhatanswered the question Congestive Heart Failure and COPD

Thank you for all of your responses. I am pleasantly surprised. I basically quit with the cardiologist( 3 of them). They were so much more interested in their tests than me. I spent most if my time an anxious, nervous wreck. I asked my Primary Care …

1 day ago

GrouchoTex

GrouchoTexanswered the question Full pft vs Spirometry

That is a good question. I'd like to know the answer to this as well.

1 day ago

Kristen Willard

Kristen Willardanswered the question My Zephyr Valve journey

2cents, going beyond the full day with caffeine sounds unholy! I am so glad you are here and I hope you continue to improve and share your experiences with us. I know it will feel reassuring when you can get some more deep breathing in. Keep us …

1 day ago

Kristen Willard

Kristen Willardanswered the question End stage. What to expect. And how long left.

Hello Locksley I'm so very sorry you and your mom are having this experience. My father was in home hospice for COPD -- some things were very predictable and others not as much. I agree with asking the nurses and physicians frankly as to what the course …

1 day ago

jdawsontx

jdawsontx

Hello Tracie.  I have been working with Carl Mullins for the past three years on newsletters and grant requests. We now have a lead on corporate funding but they are requesting a written grant request. Does COPE Foundation have a format or sample which we should use instead of free-styling this? Please advise.

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question End stage. What to expect. And how long left.

This is truly a difficult situation for you. Debbie has given you good advice. Rather than asking how long your mother has, ask the hospice nurse to explain how the body shuts down so that you know what to look for. Maybe there are already signs that …

1 day ago

Jean IA State Captain

Jean IA State Captainanswered the question What problems are there with international flights

The most important question you'll have to answer is whether you will need O2 to fly. If you use O2 now, you will need it for flight. If you don't, then talk with your doc to see if they think you'll need it in flight. If you're concerned, there's a test …

1 day ago

Jamie Sullivan

Jamie Sullivananswered the question What problems are there with international flights

Hi MCG. There is lots of helpful discussion on this topic and I am sure others will have more to add. You can search in the Questions and Answers Tab to see more. Here is a link to a search on "air travel" to get you started! https://www.copdfoundation …

1 day ago

clipper (Debbie) - NJ State Captain

clipper (Debbie) - NJ State Captain answered the question End stage. What to expect. And how long left.

I am sorry Locksley to hear about your mother's decline and how difficult your situtation is. I don't think it is possible to really know how long someone has, its just not that predicable. I did hospice care for my mom. It was cancer not COPD and when …

1 day ago

MCG

MCG asked the question: What problems are there with international flights

I want to travel to Japan;; I have COPD; Any suggestions;

1 day ago

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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.