COPD360social welcomes new member irocc who joins 62,605 current members of our community. Weโ€™re glad you're here!

baileymccrary

baileymccraryHello, lung health community!! Recent executive actions have put the U.S. federal health landscape at risk. Join the COPD Foundation as we call on our lawmakers to support our public health infrastructure to ensure that the lung health community has access to cutting edge medical research, improved care delivery, new treatments, and policies that improve the lives of those with COPD and related lung conditions.

Visit our Advocacy: Action Center to urge your lawmakers to support the lung health community!
- Support the U.S. Public Health Infrastructure: https://www.votervoice.net/COPD/campaigns/126350/respond
- Protect Medicaid Funding: https://www.votervoice.net/COPD/campaigns/126346/respond

1 day ago

Dr Jean

Dr Jean

Hello COPD Community !  I've never been more excited about the future for our community, our patients and our providers.  The opportunities continue to expand.  And if you could see behind the curtain, and see how effective our COPDF team is, you would be proud.  We just finished an inperson/hybrid board meeting in Coral Gables at the Alpha 1 headquarters.  It was great to re-connect with our Alpha-1 family.  We are working together on research, education and advocacy.  Let me know how I can help and improvements you would like to see in our community.  Until we have a cure !  Dr Jean Wright

1 week ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

๐Ÿ…๐Ÿฅ’๐ŸŒฝRICE SALAD๐Ÿ…๐Ÿฅ’๐ŸŒฝSalad:2 cups whole grain rice, cookedOne 15-ounce can chickpeas, rinsed and drained 1 1/2 cups cherry tomatoes, quartered1 1/2 cups diced cucumber 1 1/2 cups diced yellow bell pepper1/2 cup black olives, sliced1/2 cup...

6 minutes ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainBeen friends with these two geese for a very long time! ๐Ÿ˜Š

19 minutes ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State Captainanswered the question Test results

Hello Cazzy999 - Welcome to 360Social. I'm not a clinician and can't help with interpretation of your results, but wanted to congratulate you on no longer smoking. That's good news! Please take the time to read what you'll find at the top of this …

5 hours ago

Cazzy999

Cazzy999asked the question: Test results

Hi i have recently been diagnosed with moderate emphysema i have since stopped smoking but do not understand results could anyone help Acrobat Document: 4080959710_20250507_1625- SDMARESULT.pdf - Spirometry Test ๏ปฟ๏ปฟCoded entry - Forced expired …

6 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHappy Terrific Tuesday from this beautiful damselfly! Every days holds something of beauty, waiting to be discovered! What did you find today that is beautiful? Please let us know! We would love to hear about it, and hopefully see some nice pictures! ๐Ÿ˜Š

12 hours ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

๐Ÿ”ด๐Ÿ”ด๐Ÿ”ดCRANBERRY SMOOTHIE๐Ÿ”ด๐Ÿ”ด๐Ÿ”ด1 cup almond milk 1 medium banana, broken into chunks1/2 cup frozen mixed berries 1/2 cup fresh cranberries Place all ingredients in a blender. Blend until smooth.Serves 2 ๐ŸŸฅ...

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainIt's Motivational Monday!! Reminder: You CAN do it! It's all in your mindset. With a positive outlook, you can accomplish so much and reach your goals!
Have an awesome day, friends! ๐Ÿ‘๐Ÿ˜ƒ

1 day ago

Nicky_SE

Nicky_SEAll COPD symptoms, but no COPD diagnosis. What is happening to me?

Hello COPD Community! About 12 years ago, during a hospital visit for what I thought was pneumonia, I was diagnosed with COPD. Since I only experienced slight shortness of breath during extreme physical exertion, I didn't pay any further attention to it.Two years ago, I experienced my first exacerbation. I felt like I was drowning. Three months later, when the attack and shortness of breath had subsided, I had my first spirometry test. According to the test, I did not have COPD, the doctor said.

At the end of February this year, I had my second attack. This one was even worse than the first and has still not completely disappeared. I still feel short of breath, although less so than at the beginning. Three months later, I had my second spirometry test. This time, I was wise enough to ask for a copy of the results (which you can see in the appendix). Once again, the doctor determined that I did not have COPD, or at least not to any significant degree. I underwent various blood and heart tests to see if I had any other conditions that could be related to my flare-ups and shortness of breath. All the tests came back fine; nothing was found.

I don't understand. During my first test two years ago, I was no longer short of breath and felt fine, but during this second test this year, I was still short of breath and definitely not feeling my best. I have no idea what else it could be other than COPD or another lung disease. Has anyone else experienced this strange condition?


As for the test results, there are all these strange parameters that mean nothing to me. How can I tell if a particular result is good or bad? Can someone with expertise explain to me what the picture looks like for me? And is there perhaps some information about these parameters that explains in layman's terms how I can interpret the test?

Thanks

1 day ago

  • NewestOldestClick to View All Comments5 comment(s)
  • WildebeestI wonder whether you might have asthma. That will not necessarily be picked up on spirometry if you are having a good day. Normally post bronchodilator improvement would pick it up if it is there all the time, but because it is variable spirometry might not pick it up (I am no doctor, this is just what I have picked up along the way on my travels with both COPD and asthma). You say you were still feeling short of breath during your latest spirometry test, which in theory would mean that it should have picked up asthma. But anxiety can also cause feelings of breathlessness, and since breathlessness is scary anyway you can get into a loop of symptoms. Plus going for a test when you fear what it might show would also feed into anxiety. My suggestion would be to ask your primary care doctor for a peak flow meter so you can measure your peak flow daily (as people who actually have asthma should do). That might yield some interesting information over time.1 day ago
  • Jonnie Korinko (COPDF Manager of Public and Professional Education)Hi Nicky_SEโ€‹. I'm sorry that you're having trouble finding answers. Did you have a full breathing test (PFT) or just the spirometry? Essentially, were there any other numbers reported in this paper that could give your pulmonologist more clues on how your lungs are doing? Have you talked to your primary care provider to see if they think it could be another condition and refer you to another specialty (for example, a cardiologist)? I hope that you find answers soon.  1 day ago
  • HIcopd - Hawaii State CaptainIโ€™d encourage you to persist in asking questions of your doctors.  Is there a teaching hospital near you that is participating and preferred that you might be able to go to?  Sometimes they do a more thorough work up and can do a better job of integrating all the findings and figure out whatโ€™s going on.  For example, when I went to National Jewish, they spent a week testing me and then put all the information together to give me a comprehensive understanding of what was going on.


    Wishing you the best as you sort these troubling and disturbing symptoms.1 day ago
Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State CaptainI know Mother's Day is almost over here where I live, but I hope all the moms who ae members of 360Social have had a wonderful day, and if the day is just starting where you live, I hope you'll enjoy your special day. (Pease click the card)
https://bmacards.com/Ul7kg4

A Beautiful Mother's Day (Famous Tune)

Wishing you a beautiful Mother's Day.

1 day ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainSpot the bee!  ๐Ÿ” ๐Ÿ ๐Ÿ”Ž 

1 day ago

Coach Brandon - Community Manager

Coach Brandon - Community Manager

๐ŸŒธ To all the moms here on 360social--Happy Motherโ€™s Day! ๐Ÿ’–

Whether you're a biological mom, adoptive mom, stepmom, foster mom, or someone whoโ€™s loved others like your own--youโ€™ve made a difference that words canโ€™t always capture.

Youโ€™re the ones who keep showing up, even when you're tiredโ€ฆ who offer comfort, share wisdom, and remind the rest of us to keep going, one breath at a time. So many of us here have been touched by your kindness and strength, whether itโ€™s in the form of advice, encouragement, or just being there.


Today, we celebrate you. Thank you for all the ways--big and small--that you care for those around you. We hope you feel the love today and every day. ๐Ÿ’




1 day ago

Caty

Catycommented onTom the Truck Driver Drives COPD Awareness

What an inspirational person you are Tom. Is your wife any further on with her transplant ? ๐Ÿ™...

2 days ago

StaciB

StaciB

Hi. I have end stage COPD and have been on 2L of oxygen for 4 years 12% lung function ). I quit smoking recently and noticed that my oxygen saturation was 98% so I took my oxygen out of my nose and my saturation says between 93% and 95%. Is it possible that I only needed oxygen because I smoked?

2 days ago

JeanO53

JeanO53Happy Mother's Day! 
Mother Goose and her partner raising 12 goslings.

2 days ago

Ken Benson-California Lung Health Advocate and State Captain

Ken Benson-California Lung Health Advocate and State CaptainHappy Mother's day to Jackie the bald eagle.  How big your babys Sunny and Gizmo have grown. 

2 days ago

TonicDk

TonicDkanswered the question Spirometry interpretation

Your nails are blue?, are you Sob all the time ?. Did you measure your saturation ?. Your Pft looks normal to me, not a doc. All the best Thomas
Caroline West Virginia State CaptainHIcopd - Hawaii State CaptainJordan Huttonand 1 other also answered the question Caroline West Virginia State Captainand 3 others also answered the question

2 days ago

Phyliss DiLorenzo NJ State Captain

Phyliss DiLorenzo NJ State Captain

2 days ago

Phyliss DiLorenzo NJ State Captain

Phyliss DiLorenzo NJ State Captainanswered the question Ohtuvayre ??? Any feedback would be helpful!

Just started Ohtuvayre last Thursday. Not having any side effects, and am hoping it helps.
HIcopd - Hawaii State CaptainJRSNCPJCinGAand 7 others also answered the question HIcopd - Hawaii State Captainand 9 others also answered the question

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainGood morning! Rise and shine! ๐ŸŒž 
It's gonna be a great day! ๐Ÿ˜€

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainHAPPY MOTHER'S DAY to all the moms and pet Moms out there in 360Social-land!!! Wishing you all the best day ever! ๐Ÿ’ 

2 days ago

45yrcopdasthma

45yrcopdasthma

Hello beautiful people, thank you for everything this community does. The most supportive group on the internet by far. 


 So I have updates. My name is Damien Christian, I am a direct descendent of Fletcher Christian of bounty mutiny game, from Norfolk island. It seems I have upper airway obstruction. Possibly a mass, which has been causing all my breathing issues. Probably been there some time. Picked up on my second last ED visit for intense stridor and spasmodic larynx. Yesterday I  had full body spasmosis ended up in ED again full of morphine. Got to see a neurologist and getting HRCT of head and neck this week. 


 There is a possibility it's benign and just pressing on nerve pathways. It is also possibly benign and the spasmodic reaction is due to nerve damage following sepsis. The final possibility is metastatic cancer. 


 Obviously the last option is not the one I want. But either way I'm a fighter, I've been fighting hard to get a diagnosis for months now as I'm sure you are all aware. I'm not going to quit, I'm going to fight. You all inspire me to do my best. 


 I will not quit, I will not surrender. I've had friends and family with these conditions who have survived and are in remission. 


 Once again thank you all for being compassionate, supportive and amazing. 


 ๐Ÿ˜Š Damien. 

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

And, they couldn't be easier to prepare! Karen, you're sure to make even more friends if you serve these! ๐Ÿ˜„...

2 days ago

Karen Deitemeyer - Florida State Captain

Karen Deitemeyer - Florida State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

This looks absolutely yummy, Debbie!! I'd make it right now, except I don't have the chocolate chips. But I've got everything else. So, next time I go to the grocery I'll buy a bag and make this and share with my friends. ...

2 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State Captaincommented onEating Well: From Debbie Bโ€™s Kitchen to Yours

EASY NO-BAKE PEANUT BUTTER BARS1 cup butter, melted2 cups graham cracker crumbs2 cups powdered sugar 1 1/4 cups peanut butter, divided 1 1/2 cups milk chocolate chipsIn a medium bowl, mix together the melted butter, graham cracker crumbs, powdered...

2 days ago

lazy t

lazy t

I have had a concentrator for nights for a long time. The setting has been at 2L I have a portable with the same setting. Today, I had the portable operating, but I did not feel I was getting results. Minor movements dropped my oxygen levels, and it took a long time to recover. I bumped the portable to 3..., with the same result. I bumped it to four and instantly got results. I checked my concentrator and bumped it to 3.5...my levels stayed where they should.  My thinking on this is I have been at 2L for years and years. Could I possibly require more now that I have aged? I am at stage 3 and have had no change after testing. I will see my pulmo in four months for the biannual visit.

3 days ago

DebbieB.-Connecticut State Captain

DebbieB.-Connecticut State CaptainEvery Saturday, all through until it gets cold...it's plant day at DebbieB.'s house! ๐Ÿ˜„

3 days ago

HIcopd - Hawaii State Captain

HIcopd - Hawaii State Captainanswered the question How safe is Famotidine 40 mg ?

I agree with Caroline. I took a proton pump inhibitor, Prilosec for about 16 years and we finally switched me to an acid blocker. I take it every night and have for about 9 years. My husband has likewise been taking his acid blocker mornings and evenings …
Caroline West Virginia State CaptainKaren Deitemeyer - Florida State Captain also answered the question Caroline West Virginia State Captainand 1 other also answered the question

3 days ago

Ken Benson-California Lung Health Advocate and State Captain

Ken Benson-California Lung Health Advocate and State Captainanswered the question Has anyone used Wixela for COPD and if so, was it useful in relieving any symptoms?

I was switched from Advair to Wixela a few years ago by my provider. I've noticed no difference between the two.
David Mannino, MD (Chief Medical Officer, COPD Foundation ) also answered the question David Mannino, MD (Chief Medical Officer, COPD Foundation ) also answered the question

3 days ago

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. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.