• Connie Lum posted an update 1 year, 8 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 with the biopsy thing. Do I really need it. I caught this in it’s early stage, I have no symptoms. Have enjoyed reading the forum. I don’t feel so alone with this disease.

    • 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 transplant like your brother. Congratulations to him — I am so happy to hear he is doing well! Did either of your parents, or other family members (besides siblings) have PF/IPF? Just curious too about how some of your siblings do, while your older sisters do not.

      I can certainly understand your concern around the biopsy, it is pretty invasive and while I didn’t have this to diagnosis my PF, I know many others who have. Some of them are on the forums so hopefully they will read and respond to this about their experience, otherwise I will start a forum topic about it so others will definitely see it. Are your doctors encouraging you to get the biopsy? I know they often like to use this as a diagnostic, it just always isn’t the best for us.

      So glad to hear you’re enjoying reading the forums — please know you’re among friends who truly “get it” on here and welcome again! I look forward to getting to know you a bit better through the forums.

      Warm regards,
      Charlene.

      • 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 recently…you can read her response
          here: https://pulmonaryfibrosisnews.com/forums/forums/topic/starting-esbriet/#post-13798

          So glad you’re in good health and are symptom free – will keep my fingers crossed that this continues for you for a long time. Sending you nothing but best wishes!

          Warm regards,
          Charlene.

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