Pulmonary Fibrosis News Forums Forums Healthcare Questions Diagnosis​ ​Information​ ​and​ ​General​ ​Questions What Do You Wish You’d Known When You Were Diagnosed with PF?

  • What Do You Wish You’d Known When You Were Diagnosed with PF?

    Posted by Charlene Marshall on September 21, 2021 at 7:53 pm

    A dear friend and fellow beloved columnist, Kim Fredrickson, who passed away in 2019, shares some valuable and useful tips on the things she wishes she had known when she was diagnosed with pulmonary fibrosis. Some of those things included the benefits of exercising as soon as possible and doing breathing exercises regularly; many sentiments echoes by other PF patients. 

    Read what else Kim had to say here: What I Wish I’d Known When I Was Diagnosed

    What do you wish you’d known when first diagnosed?

    What has helped you the most to live with pulmonary fibrosis?

    Christie Patient replied 2 years, 6 months ago 7 Members · 10 Replies
  • 10 Replies
  • Paul B ~ Lakeland

    Member
    September 21, 2021 at 10:10 pm

    Having had Covid last December, then frequent cough for 4 months, then PF diagnosed, I wonder if the Covid kind of ‘kick-started’ the PF? Has anyone heard of a similar path toward PF diagnosis?  Thanks!   Paul in Lakeland

    • Charlene Marshall

      Member
      September 26, 2021 at 9:33 am

      Hi Paul,

      Welcome to the PF forums and thanks for sharing a bit of your story with us. I’m really sorry to hear you have PF following COVID – have they officially said it is COVID-induced PF? I have heard of this happening unfortunately as the virus can cause permanent damage/scarring in the lungs. I think there the understanding around this is still developing but there are some statements on the Pulmonary Fibrosis Foundation’s webpage about this and further understanding the link between COVID and PF. I don’t know a lot about it, but a few people on here have joined the forums as a result of having COVID and now PF. Feel free to reach out to them directly or if I can help facilitate that, just let me know.

      Take care,
      Char.

    • Kathleen Ryan

      Member
      November 21, 2021 at 8:13 am

      Hi Paul,

      My doctor feels that my PF also began with Covid.   I was intubated for 17 days with Covid, and after recovery I continued to have problems.  Six months later a CT scan show PF.  Like you, I was coughing more.  This was in March 2020.  Take care, and keep positive!

      Kathleen

      • Paul B ~ Lakeland

        Member
        November 21, 2021 at 11:41 am

        Kathleen,
        Thanks for your response. It’s somewhat comforting to know that others have been on the same path. Wishing you the best.
        Paul

      • Christie Patient

        Moderator
        November 22, 2021 at 3:38 pm

        Hi Paul and Kathleen, you might find some of the information in the COVID & PF subforum to be useful. You are not alone in COVID-related. Wishing you the best,
        Christie

  • Sue Steele

    Member
    September 25, 2021 at 10:32 am

    I wish I knew I had it earlier z I could have taken the medication that slows it down.

    • Charlene Marshall

      Member
      October 17, 2021 at 2:05 pm

      Agree with his very much, Sue! The 13 months that “I couldn’t have IPF because I was to young” robbed me of time with the anti-fibrotics. Take good care of yourself.
      Char.

  • Vera McKee

    Member
    September 27, 2021 at 1:50 pm

    From my own experience all I can say is to stress the role of exercise in maintaining good LFT results. I am ashamed to say that I did not pursue my exercise regimen when COVID struck. I missed the fellowship of the classes at the gym and Tai Chi. I swam regularly and now I am on constant oxygen and tire easily. If anyone can help and suggest anything given my exercise tolerance is low I would be so grateful

    • Linda Maguire

      Member
      September 28, 2021 at 5:09 pm

      I would suggest walking.  Go at a slow pace & for whatever amount of time that you can tolerate to start with & build from there.  A gentleman in my support group couldn’t walk farther than his mailbox when he started, & now he is walking for a couple of miles daily!

  • Sue Steele

    Member
    September 27, 2021 at 2:04 pm

    What’s LEF?
    I walk a treadmill each day. I’m on oxygen all the time also. My Dr. said I can adjust the oxygen level so that is over 90 on the finger oximeter. I put the level on number 3 and a half. I walk for 45 min.
    regards,

    sue

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