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  • Hello Charlene,

    Absolutely spectacular pictures of Hawaii. I’m very envious. Someday I have to reread how you made it that far from your home. United requires me to carry enough battery power to cover twice the distance to my destination. I live north of Chicago so if I carry two double batteries for my Imogene One G3, I can only get to the w…[Read more]

  • Hi Charlene,

    You and I have to be brother and sister from different mothers because our bodies react to IPF the same. First, and foremost, I believe a lot of the muscle pain and cramping is a function of IPF inhibiting the oxygen to those muscles but the cramping is directly related to the medications we take. I have taken both Ofev and Esbriet…[Read more]

  • Hi Mark,
    When I was younger and working I made many trips to the Far East most frequently to the Philippines and China. I always seemed to return home with a bronchitis feeling in my lungs. And I mean every trip. My doctor prescribed Nasonex or Flonase nasal spray which I always started two days before the flights and continued on the flight when…[Read more]

  • Hi Charlene and other writers on this thread. I am learning this forum is a wonderful source of guidance on the many decisions we make as IPF patients. For me the discussions on one or more lung transplants is extremely helpful. I am 69 years old and except for the fact that I am overweight I think I fit the profile of a worthy transplant person.…[Read more]

  • Robert Morrison posted a new activity comment 1 year, 5 months ago

    Hi Charlene – Yes your response clears up my confusions and concerns and I thank you very much. Yes I am on higher deliveries of O2 and quite honestly now I wear my oxygen tubes whenever I can. I used to not use it until my sats dropped below 90. Now I wear it a lot and feel better for doing so. I am returning to the Midwest US next week and doing…[Read more]

    • Hi Robert,

      Thanks so much for you reply, I am really glad my response helped a little bit 🙂

      I am similar to you, and although I used to hate wearing my oxygen, now I can tell a big difference in how I feel overall when I am wearing it so my preference is indeed to have it on. Like you, I feel better when I do. I hope your return to the midwest…[Read more]

  • Robert Morrison changed their profile picture 1 year, 5 months ago

  • @charlene-marshall Related to the desire for normalcy you touched on something that just caught me about a month and a half ago. You and I were diagnosed as having IPF in 2016. And I am now quite sure I had an exacerbation that surfaced in late Feb – early Mar. I cannot be sure as I spend my winters in Florida, without a pulmonologist, and…[Read more]

    • Hi @rjmo3comcast-net (Robert),

      Thanks so much for writing to me, and sharing a bit about your story. Yes indeed, it looks like we were diagnosed with having IPF just within a few weeks of another. I’ll never forget April 7 2016! I’m really sorry to hear of your suspected exacerbation, they are scary and mine in May of 2017 left me fearful of this…[Read more]

      • Hi Charlene – Yes your response clears up my confusions and concerns and I thank you very much. Yes I am on higher deliveries of O2 and quite honestly now I wear my oxygen tubes whenever I can. I used to not use it until my sats dropped below 90. Now I wear it a lot and feel better for doing so. I am returning to the Midwest US next week and doing…[Read more]

        • Hi Robert,

          Thanks so much for you reply, I am really glad my response helped a little bit 🙂

          I am similar to you, and although I used to hate wearing my oxygen, now I can tell a big difference in how I feel overall when I am wearing it so my preference is indeed to have it on. Like you, I feel better when I do. I hope your return to the midwest…[Read more]

  • Hi Charlene,

    To follow up, I had no other side effects from taking Esbriet other than sun sensitivity. I was a little surprised my doctor allowed me to switch to Ofev. However, when I asked him why he i.e. Northwestern Medicine, chose Esbriet in the first place, he didn’t really know. I think both drugs were relatively new and Northwestern c…[Read more]

  • I currently am on 150 mg of Ofev every twelve hours. I was on Esbriet for about 18 months and then switched to Ofev earlier this year. For me the fact that I became very sun sensitive using Esbriet was the motivation to change. I chase the warm weather (and sunshine) during the winter months so being able to spend time in the sun is a must. With…[Read more]

  • Robert Morrison posted a new activity comment 2 years ago

    Thank you. Been reading the forum since IPF diagnosis in 2016 and realized there are a lot of folks going through what I am. Thought it time to get involved because I have many more questions than answers. If you believe in the five steps of grief (I do) I think I am beginning and hoping to move from step 4, depression, to the final step,…[Read more]

    • Hi @rjmo3comcast-net, I’m so glad you’ve joined us! My diagnosis was early 2016 as well and although I wasn’t ready right away, I was so happy to find this supportive platform where others are going through I am. I find it very helpful to be part of this community, so I do hope you find it helpful as well. Please feel free to write any of your…[Read more]

  • Robert Morrison became a registered member 2 years ago

    • Hi Robert, welcome to the PF forums. Thanks for joining us!

      • Thank you. Been reading the forum since IPF diagnosis in 2016 and realized there are a lot of folks going through what I am. Thought it time to get involved because I have many more questions than answers. If you believe in the five steps of grief (I do) I think I am beginning and hoping to move from step 4, depression, to the final step,…[Read more]

        • Hi @rjmo3comcast-net, I’m so glad you’ve joined us! My diagnosis was early 2016 as well and although I wasn’t ready right away, I was so happy to find this supportive platform where others are going through I am. I find it very helpful to be part of this community, so I do hope you find it helpful as well. Please feel free to write any of your…[Read more]

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