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  • Does anyone get relief from breathlessness

    Posted by gavin-john-powers on May 16, 2023 at 4:36 am

    Hello all. I had a major exacerbation 9 weeks ago and my breathlessness has become severe and is progressing each day even at rest. It feels I can only breathe in a tiny bit of air. It’s dreadful. I just wondered, of those of you, bless you, who have very severe breathlessness, do you ever get days or periods where you can breathe easier? It’s so much of a struggle.
    Advice would be appreciated greatly. Kind regards, Gavin.

    bill-mattila replied 4 months, 2 weeks ago 5 Members · 5 Replies
  • 5 Replies
  • peg

    May 16, 2023 at 2:55 pm

    Your oxygen requirements may have changed after the exacerbation. You should try turning up your oxygen and see if there is a point where it helps the breathlessness.

  • robert-nagell

    May 16, 2023 at 4:09 pm

    My mother developed atrial fibrillation which resulted in additional breathlessness despite her oximeter readings showing adequate oxygen levels.  If your O2 readings are ok and the breathlessness is unexplained, prompt evaluation would be a good idea to check for other causes or contributing factors…best wishes!

  • Debbie k

    May 16, 2023 at 9:22 pm

    Hi I have had two exacerbation  and with each my O2 level has increased. I’m now at 6 or 7. Talk to you pulmonologist and cardiologist. U need to be evaluated. I also had pneumonia with each exacerbation and things got worse.   Also I can’t remember exactly but my pulmonologist explained that my carbon monoxide can’t be exhaled which causes difficulty with breathing   Good luck and God bless. I lost my sis to PF. It’s a horrible disease. 🙏🏻🙏🏻

  • Lee

    May 16, 2023 at 9:22 pm

    Gavin, I have been through severe situations with pulmonary fibrosis. I wrote a book that was recently published on Amazon called A Matter of Life and Breath about my journey.
    There are some specific exercises I followed for breathlessness and oxygen anxiety. I have also found excellent relief using the Buteyko breathing method. Patrick McKeown writ a book call The Oxygen Advantage that describes methods for calming breathing exacerbations. He also has several youtube videos. You may contact me by email and we can set a time to talk by phone anytime. [email protected]
    All the best to you,
    Lee Fogle

  • bill-mattila

    May 16, 2023 at 9:23 pm

    Is important that you make sure that the exacerbation is stopped.
    It can go on and on as much as 6 mo.As that was I had read about
    This disease. Go hospital if you have to. That what I read about this. Good luck WJM

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