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    • #26695
      Patricia Williams
      Participant

      I am in advanced IPF and all of a sudden I have gotten  worse. My breathing is terrible. Is this a phase or am I getting worse in my disease.

    • #26712
      Bernie Bak
      Participant

      Getting worse and “breathing is terrible” are very uncomfortable and can be alarming. Do you have an oximeter and do you measure your oxygen saturation levels?  By “getting worse” are you saying you are experiencing more episodes of shortness of breath? Do you currently use supplemental oxygen?   What you are experiencing should be discussed with your pulmonologist for evaluation and recommended course of action.

      • #26722
        Mark Koziol
        Participant

        Hello Bernie and Patricia. Bernie, thank you for your reply to Patricia. Patricia I’m sorry to hear you are experiencing more discomfort than usual. Bernie, you have Patricia great advice. Your reply to your fellow member is one of the reasons why I feel we have the best online support system. Our members are well informed, intelligent, kind, and always willing to help a fellow member. I wish you both a happy new year, mark.

    • #26713
      Bill Mattila
      Participant

      I had to kinda of remind my Doctor that I was short of O2 on working. He wrote a 2liter constant flow so now I haul a 22lb machine around with me. They said that the small machines won’t work on constant flow and where only on demand which was a lie.

      They will do that and up to 5liter. Now I’m stuck with boat anchor.
      Now should I spend 2000$ on portable. Any thoughts would be considered.           William Mattila

      • #26723
        Mark Koziol
        Participant

        Hello Bill, can your physician give you any other machine options. He would only have to rewrite the script. Hopefully you can get this resolved without having to spend the extra $2000. Have a great new year, mark.

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