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Janet

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@jaanetmczach

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    • December 7, 2022 at 11:24 am #33807
      Janet
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      I wish I knew. I was slender before IPF and have lost 30 more pounds in the past couple of years. Food tastes bad, so I must force myself to eat; every meal is a battle. I also have GERD, as s many of us do, so I have diarrhea and gas. If I drink a nutrition shake mid-morning, then I can’t eat lunch. I look terrible and can’t find any clothing that fits me. My pulmonologist says that right now my weight is more concerning than my IPF. I have worked with a nutritionist and am following her suggestions as best I can. I don’t know where to turn.

    • November 17, 2022 at 5:04 pm #33602
      Janet
      Participant

      Hi, and thanks to William for starting this thread. We live in Cypress, TX, which is a Houston, TX, suburb, and it takes about an hour to get down to the med center area, where I get medical care. I was diagnosed with IPF in January 2022, when we lived in Austin, TX, and have had escalating symptoms since 2018. Started taking Ofev Oct, 31, often followed by Imodium for the side effects. I have been part of a PF Warriors support and a Houston-based group, both online. I have been feeling rough, but my O2 saturation is still in the 90s, so no oxygen yet. Some days I can still get in a short walk, but it really strains my breathing. I’ve lost around 30 pounds over the past two years and most of what I eat tastes like cardboard, but I’m trying to keep eating because my docs keep telling me to. My husband is taking on more and more and doing a great job, but I worry about his burning out. We are going to a family reunion over Thanksgiving for three days, and I’m worried about how I’ll do.
      Oh, shoot, all I have done is complain! I’m sorry. Positivity: I’m sleeping better than I was and Greek yogurt takes pretty good.

    • October 18, 2022 at 3:37 pm #33306
      Janet
      Participant

      I would be interested in joining the discussion. Thanks.

      Jan

    • December 21, 2022 at 2:55 pm #33921
      Janet
      Participant

      I have had a few attacks of severe chills, shaking like crazy and SOB. Today it was after respiratory therapy exercise.During RT all O2 was all in 90s. In the car going home.had on a down jacket but hands, legs, arms and shoulders all shaking. O2 down to 85, and it took me a half hour on heating pad before I could type this. Sorry (but valiated) to hear others experience this.

    • September 27, 2022 at 4:45 pm #33177
      Janet
      Participant

      I’m trying Mucinex now. How long is too long to stay on it?

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