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    • #31198
      Doug
      Participant

      As a clinical psychologist for the last 44 years and one with IPF of the Usual Interstitial Pneumonia type, requiring O2 use all the time, I thought I’d share some of what my experiences and training have taught me about dealing with bad news.

      When people hear bad news such as you have IPF, it is common to have negative thoughts such as  “This isn’t fair” “It shouldn’t happen to me” “This if Awful” and other negative thoughts about the now and the future. Most of us would tend to think this at first but the goal is to realize this not helpful.  What is helpful is to focus on Acceptance an what to do about the problem.

      Positive actions are such things as seeking medical help, taking actions to stay as healthy as possible, becoming educated about your disease and its treatment, and being as active as possible including having fun.  It is very important to be involved.  To change a proverb a little, “An idle mind is the devil’s workshop.”  Like many things in life this is easier said than done, but it can be done.  As I sometimes told my patients/clients, Dealing with negative situations can be hard, terribly hard, but never tell yourself  “it’s too hard.”

    • #31217
      Laila
      Participant

      Thanks for starting this thread @dougpys
      Since I was first diagnosed in December 2020 my thoughts have swung from total shock at the possibility that I wouldn’t live to see my youngest graduate from uni, to a detached interest in this “rare disease” to massive denial and back again. I’m doing all I can to be healthy and have pretty much hibernated for the past two years. My GP has told me that “this is not a life” but my respirologist has said that if I have any sort of respiratory infection and am hospitalized I have a 50% chance of not surviving. A bit of a jolt to hear that!
      I’ve been lurking on this forum for the past year and have appreciated learning from the conversations between people who are further along with this disease. Thanks to you all.
      At this point I feel that I’m doing remarkably well but am haunted by my respirologist’s comments that my condition can deteriorate quickly at any time. This gives me the shivers but I’m just taking everyday as it comes, trying to take good care of myself and enjoying the people in my life.
      Big hugs to you all.

      • This reply was modified 3 months, 3 weeks ago by Charlene Marshall. Reason: tagging
    • #31235
      Steve Dragoo
      Participant

      @dougpys

      Thanks Doug, I know there are several stages to grieving and IPF brings them all out.

      Stay well…
      Steve

    • #31260
      Debra Lowder
      Participant

      In response to Laila: I too am in the beginning of accepting this disease (diagnosed April 2020), and my best advice is to exercise. I walk 2 miles a day at a health center where the environment is temperature controlled. I feel good (except for fatigue in the afternoons). I am 68, and still healthy enough to travel. I guess this is as good as it gets for now, but makes me thankful for small blessings. Check into the 2 medications that slow the progress of this disease, and do things that make you happy. That’s the best advice I have.  Take care of yourself. Debra

      • #31366
        Laila
        Participant

        Thank you Debra

        I’m not sure about the two meds that you mentioned.  When I mentioned antifibrotics to my respirologist she suggested that I wait because the side effects are so severe.  I wonder if that is the best advice and would hate to miss living healthier for longer if they do indeed help.
        Good for you for travelling.  I have stayed home for two years now… no travel, no visitors but lots of online and curbside shopping.  Not how I expected to spend my retirement at all! Lol

        • #31379
          Christie Patient
          Moderator

          Hi Laila, yes the side effects are unpleasant (see copious posts to attest to that in either the OFEV or Esbriet subforums). But sometimes one works better than the other, in terms of side effects, for people. So it’s possible that you could switch if you find it too hard to tolerate the first try. The way I see it, it’s a choice between potentially crappy (pun intended) side effects or more rapid disease progression… Plus you can always quit them if both are intolerable, but why not try? The choice would be clear to me if I had PF, but alas I am just a caregiver, so take my opinion and toss it out the window if you’d like.

        • #31431
          Debra Lowder
          Participant

          Dear Laila: I was prescribed Esbriet 6 months after my diagnosis, and I have had good results on CT scans – very little progress with the disease. The side effects were not too bad and they lasted for about 3 months. They are now manageable, and my diet change was a huge factor. The best advice for managing the side effects: Eat well and get enough protein. Cut out junk and sugar. Ask your doctor to consider the antifibrotic that’s right for you, and if you’re not happy, change doctors. Consider making an appointment with a medical university near you. I now go to Duke University once a year just to keep up with the latest treatments. Email me anytime if you have more questions, or just to chat. Battling this alone is tough, and it helps to talk to someone going through the same thing. Best wishes. Debra

        • #31439
          Patrick Coghlan
          Participant

          What types of protein do you find works well?  An egg with breakfast?  A PB sandwich?  Yogurt?

          What types to avoid?  Bacon (love it but…)?  Deli meats?

        • #31461
          Steve Dragoo
          Participant

          @coghlan

          Hi Patrick,

          There are a lot of vegetables and some grains that are excellent protein sources. Think broccoli, quinoa, lentils, and most beans – to name a few. Most of those are easy to cook and there are many more. I like making my own burritos and add brown rice to the beans.

          I used to love bacon but it especially and all processed meats are not healthy and can cause serious inflammation -that’s bad news for IPF.

          Stay well…
          Steve

        • #31465
          Patrick Coghlan
          Participant

          @steve-dragoo Yes, I’m thinking it may be time to refrain from processed meats, bacon anyway.

        • #31476
          Steve Dragoo
          Participant

          Probably a great idea, Patrick. I liked processed meats far to much but make as many healthy substitutes as possible.

          Stay well,
          SteveD

    • #31470
      Robert B
      Participant

      I was diagnosed with IPF in early 2000’s. I’ve been on oxygen for 19 years. Two years ago, my pulmonologist prescribed Trelegy as a once a day inhaler, and azitromiasim (?) three days a week and prednisone (steroid) once a day. Before these I coughed all the time and had several lung infections. I’m on 3 liters and function well most of the time. I stay active with people and do as much good for others as I can. Plus I play golf twice a week. I don’t have near the strength I had years ago but I’m committed to never giving up to doing nothing, even though I seem to do nothing a lot of the time. I’ve got other physical problems but my attitude is still the most critical part. Bobby

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