• Hi Charlene,

    I know exactly how you feel. I never wear a mask in public if just going around town but I should change that habit. I am leaving for a 15 day cruise to Hawaii. I am taking a N95 disposable mask but not sure how often I will wear it. What are your recommendations and those of others reading this? Will you wear it every time you leave…[Read more]

  • Hi,

    I am on Esbriet. Almost a year now. I have noticed an increase in hair loss, especially in the shower. My hairdresser says she doesn’t think I have more hair loss but I have a lot of hair to begin with. I know this directed at Ofev but I think there is a crossover of side effects between the two drugs. This could be difficult to blame hair l…[Read more]

  • Hi Katie- I think a journal is a wonderful idea. I’ve tried to write a journal off and on for years. But had difficulty keeping it up. It would be interesting to see how my journey goes. I feel like I don’t even have IPF. Which is a good thing and to chronicle my journey. A doodling space is a great idea. Perhaps some ideas of what to write for…[Read more]

  • Hi John,

    I was diagnosed in October 2018. I chose Esbriet because I was concerned about the GI issues with Ofvef. I am currently at the max dose and have no issues at this time. I did in the beginning when I tried the max dose so backed off for about a month with a smaller dose and then tried again and I have not had any issues. I live in…[Read more]

  • Connie Lum posted a new activity comment 1 year, 6 months ago

    Hi Charlene- Thanks for your response. My father had COPD. Yes my doctor feels since I am in such an early stage I should do fine. He is thinks a confirmed diagnosis is best. I am in very good health right now. I walk 5 miles a day nearly every day. I have no symptoms unlike some people who go through a biopsy. Enjoying it while I can.
    Connie

    • Hi @connie-lum, I hope you’ve had a nice weekend and thanks for getting back to me!
      Sorry to hear of your father’s COPD diagnosis as well, and glad to hear your doctor thinks a biopsy will go well since you’re in such an early stage. It is such a personal decision to get a biopsy or not, isn’t it? Claudia shared a bit about her experience with one…[Read more]

  • Connie Lum posted an update 1 year, 6 months ago

    Hi Charlene- I was recently diagnosed with PF. Although I still need a lung biopsy for 100% confirmation. My younger brother just a a double lung transplant and is doing well. My other brother was also recently diagnosed because of what happened to my brother. I’m quite surprised we all have it , although my older sisters do not. Been wrestling w…[Read more]

    • Hi @connie-lum, oh thank you so much for getting in touch with me and sharing a bit of your experience. I am so sorry to hear of your recent diagnosis of PF, along with your siblings having it as well. Although, I am happy to hear you’ve caught it in the early stage, and as a result, will be able to monitor its progression and possibly consider a…[Read more]

      • Hi Charlene- Thanks for your response. My father had COPD. Yes my doctor feels since I am in such an early stage I should do fine. He is thinks a confirmed diagnosis is best. I am in very good health right now. I walk 5 miles a day nearly every day. I have no symptoms unlike some people who go through a biopsy. Enjoying it while I can.
        Connie

        • Hi @connie-lum, I hope you’ve had a nice weekend and thanks for getting back to me!
          Sorry to hear of your father’s COPD diagnosis as well, and glad to hear your doctor thinks a biopsy will go well since you’re in such an early stage. It is such a personal decision to get a biopsy or not, isn’t it? Claudia shared a bit about her experience with one…[Read more]

  • Connie Lum became a registered member 1 year, 6 months ago

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