Mayo Clinic Connect
Confused by PFT so much to absorb ! What are the treatments for Mild, Moderate and Severe .
Liked by debbmol62
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?
Liked by girlbybay
Red…I am at the border of mod/severe. 48% lung function. 68 yrs old, male. I use 2L O2 at night, use a nebulizer (covered under part B), meds are Brovana x2 and ipratropium bromide x4, and use albuterol prn (also under part B).
I vol for clinical trials when avail at Mayo, they aren't so scary. I am using respiratory therapy and try to remain positive. Just remember "I have COPD, but COPD hasn't got me."
Liked by annhd1420, girlbybay, joelars
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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
Liked by nancyjac
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.
Liked by Teresa, Volunteer Mentor, Lisa Lucier, Connect Moderator
@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.
Liked by Lisa Lucier, Connect Moderator, justapril
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.
I need advise in finding a economocal lodging in the month of January 2019, I live in chicago area which is rbutal weather wise in winter.
I prefer Sandiago or Phenix Arizona. Thanks
You may notice that I removed your personal email and address from this public discussion. Posts to the discussion board are public, and we don't want you getting unwanted spam etc. We recommend sharing personal contact information by private message as it is a secure, private option.
Thank you for understanding.
@rudyhoskot1, could you share a few more details? May I ask what brings you to Connect?
Liked by Merry, Volunteer Mentor
Just joined to try and see if COPD/ Asthma, Emphysema can be helped by Stem Cell treatments . While medication has helped somewhat I am uncomfortable and short of breath most of the time.
Marc, I have asked that question at mayo Rochester… their repl was it is being worked on, not FDA approved so insurance won't cover..and is an expensive gamble.
I've heard both good results and bad, even the good results are not long lasting and most insurance don't cover at this time, as I suffer from end stage COPD and wish something would help reverse the damage
It can be really difficult to tell which stem cell therapies and regenerative medicine practices are effective and which institutions are offering evidence-based proven therapies. In fact, recently the Food and Drug Administration (FDA) released a stern warning against unproven stem cell therapies. The FDA issued these two press statements: https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm573427.htm and https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm573431.htm.
To help people learn more about the proven therapies and the promise of developing therapies, Mayo Clinic offers a free telephone consult service. When you call the consult service, they will tell you about the availability of approved stem cell therapy at Mayo Clinic and elsewhere, and for what conditions. They can also tell you about research studies that are actively recruiting participants. Furthermore, you can add your name to a database to be notified when additional studies and information become available. You can learn more about the Consult Service here http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/patient-care/clinical-services/regenerative-medicine-consult-service.
Or call 1-844-276-2003 to speak with one of our experts.
Liked by Merry, Volunteer Mentor, joelars
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