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    • #30003

      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?

    • #30007
      Paul B
      Participant

      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

      • #30051

        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.

    • #30043
      Sue Steele
      Participant

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

      • #30216

        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.

    • #30071
      Vera McKee
      Participant

      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

      • #30088
        Linda Maguire
        Participant

        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!

    • #30072
      Sue Steele
      Participant

      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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