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COPD and Emphysema: Want to connect with others
Hi @redsox, welcome to Connect.
I'd like to introduce to other members on Connect talking about COPD and emphysema. Please meet @robertjr @oldkarl @waterboy @ppeschke @cognac @littleonefmohio @sneakerss @jo54 @crashnam and @penlee. You can read more about them in these discussions:
– copd end stage https://connect.mayoclinic.org/discussion/copd-end-stage/
– Just wanted to say hello. Have congestive heart failure & COPD https://connect.mayoclinic.org/discussion/just-wanted-to-say-helllo/
– Howdy fellow worriers: Questions about lung biopsy for COPD https://connect.mayoclinic.org/discussion/howdy-fellow-worriers-i-speak-mainly-for-myself-ive-got-a-bunch/
– Palpitations & Emphysema https://connect.mayoclinic.org/discussion/palpitations-emphysema/
Redsox, you mentioned that understanding Pulmonary Function Testing (PFT) can be so confusing. Here's some information about it https://www.healthline.com/health/pulmonary-function-tests
What questions would you like to ask other members about PFT? Have you had the test done or are you preparing for it?
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not sure if I am doing this correctly, there is a great deal to take in on this site when you are new. Please forgive me if I am incorrect in popping in here. I saw redsox had COPD and emphysema both, I just finally was told by my pulmonary Dr. at home that I have COPD for sure as well as emphysema. I have never smoked and am having my first summer with long-lasting breathing issues. I am hoping I can learn more here so I can at least ask intelligent questions at Dr. appointments.
Red, one thing you should is get checked for Alpha 1, it can be FREE and it is a simple finger poke. Go to http://www.alpha1.net
Hello Colleen, I am not sure I am posting correctly, I asked a question and no one seemed to notice it, or maybe it takes quite a while on here I am not yet familiar. I had a diagnosis of COPD emphysema the entire story is too long to insert here. Last week at a routine visit to my pulmonary Dr. my spiro went to 29 which I am told is critical. I was given the walk test and dropped to 88 rather rapidly. He gave me the order of oxygen 24/7 which I had only been using it at night. With a chest wall surgery in the past that left my lung herniated and then herniation repair surgery I am wondering if my surgical mesh could be causing issues since I went from okay for some length of time to critical,the last time I saw pulmonary in Mayo they about partially paralyzed diaphragm but I balked at the ENG test being performed on my diaphragm. I am now ready to submit to that test to see if that could be part of my problem. I plan to call mayo or send a message via portal to my pulmonary Dr. on Monday. Anyone have words of advice, I feel pretty at sea to be put on oxygen 24/7 I am not yet 60 and never smoked. Any advice would be appreciated.
@blueheeler309 definitely get tested. It’s confidential and free. https://redcap.musc.edu/surveys/index.php?hash=621bf66ddb7c962aa0d22ac97d69b793
Hello BlueHealer: I am a lung cancer survivor or 10 years and 7 months and never smoker . Definitely see your Mayo Clinic Pulmonologist. It may be helpful to think about paced breathing, Mindfulness and Resiliency training with Dr Amit Sood. After
lung cancer surgery I was afforded an amazing opportunity to be in his research study that I personally felt helped save my life
with what is now in a several books, "Happiness" is one of my favorites.
The program took me from pursed lip breathing while walking very slow, heal toe, heal toe, to accomplishing running three years
later. I have been running and bicycling since. Please understand, I clearly understand the fear factor of not being able to take a
deep breath. In the last few years there have been remarkable medical advances in the world of lung research. It's all about getting the proper care and proper diagnosis. All my best,
thank you, I am going to try to reach my pulmonary tomorrow, I will inquire about it with him.
thank you @llwortman, I will look into the paced breathing I met with a speech Dr. several trips ago and she noticed my abdomen rarely moved with breathing it was all in my chest. She gave me some exercises to do, but I am not noticing any improvement. When listening to my lungs I am usually told I am moving very little air in my lungs. I am finding this all to be so frustrating. I am exhausted most of the time, covered in a cold clammy sweat, and often out of breath. thank you for the input both of you I appreciate it very much.
there is a vibrating vest that works well, and a vibrating hand held breathing device also not much for cure as of yet besides lung replacement.
This was meant to be a general post not a specific reply but I'm not smart enough to figure out how to post.
I was speaking to the regenerative medicine researcher. I was told funding has been approved for a new stem-cell copd trial. This is a small, 15 person, trial. The underlying reason is to ensure donor lung, stem-cells are safe (donor as opposed our own). The point is, we could use our own without much risk of side effects but it isn't cost effective to remove ours and grow the millions needed from those relatively few. It is cost effective to use a pre-existing donor bank containing billions of lung stem-cells (they know how to grow them). If this test proves donor cells are safe, they can proceed to larger test populations, focusing on the efficacy of the therapy on copd. So far, the effects of lung stem-cells while they haven't resulted in side-effects, they haven't been very effective in reversing copd. I understand in the previous tests only 5-10% of subjects reported a significant improvement of symptoms.
Any comments, I'd love to hear them. I want this to work, so badly.
Hi, I have COPD & Pulmonary Hypertension and a 75% Paralyzed Diaphragm and they put me in for a sleep study and said no sleep apnea but i do stop breathing at night?? they haven't told me much but my Medicaid ins doesn't pay for treatment and i have a long list of other Problems with fatty Liver and AKI and CHF .. is there anything i can do to get any treatment ?? Dr Google already has me with one foot in the Grave 🙁 what is Life Expend ency without treatment ? Please someone help me with Knowledge .
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