• michelleb

    Member
    March 15, 2022 at 3:36 pm

    For those of you that wrote about end-stage well… when I was diagnosed in 2014 SEVERAL different medical facilities said I was at end-stage pulmonary fibrosis, interstitial lung disease have 1.5 yrs left to start preparing. Well I’m still here my pulse ox is 10 points higher I attribute to exercise, diet green tea extract capsules.   Drs do not know  & they should not be giving you end-of-life dates that messed me up so bad.

    I’m still not on oxygen. mind you, I can’t run a marathon but never could lol.

    God bless. Live everyday stop thinking about dying I lost 2 great yrs w my daughter being scared of hoping out etc… that I’d get worse & die on her but how did locking myself in my home help her???

  • michelleb

    Member
    March 15, 2022 at 3:37 pm
      <li style=”text-align: left;”>InFor those of you that wrote about end stage well… when I was diagnosed 2014 SEVERAL different medical facilities sId I was T end stage pulmonary fibrosis, interstitial lung disease & have 1.5 yrs left & to start preparing . Well I’m still here my pulse ox is q0 points higher I attribute to exercise, diet & green tea extract capsules

    Drs do not know  & they should not be giving you end of life dates thatessed me up so bad.

    I’m still not on oxygen mind you I can’t run a marathon but never could lol.

    God bless. Live everyday stop thinking about dying I lost 2 great yrs w my daughter being scared of hoping out etc… that I’d get worse & die on her but how did locking myself in my home help her???

  • russell-jalbert

    Member
    March 16, 2022 at 7:46 pm

    I too lost over 40 pounds, but it wasn’t (and isn’t) easy. I truth, part of my success wasn’t because of my new dietary plans…it was due to OFEV. That drug was, for me, a GI catastrophe. After a year and a half, I had to give it up and went to Esbriet and stomach returned to normal, and I got my appetite back. Which means I am dieting again to hit the transplants team target BMI. The irony of this isn’t lost on me 🙂

  • tonybishop

    Member
    November 16, 2022 at 8:14 pm

    I have to have the odd day free of Ofef when the stomach and daiareah gets bad. I also find that  a loperimide capsule helps greatly at onset.

    Tony Bishop.  Canterbury, New Zealand.

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