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  • I need input. I had chest lung biopsy end of Jan. got results and inconclusive. septal thickening but mostly shows inflammation. pulmonologist seemed baffled due to my moms death and bro diagnosis w IPF– both IPF. he asked about birds and pets? mold and cats????? no to birds but have 2 cats. Input???? chyna

  • yes, i do have IPF> yes i have a pulmonologist — I have had an open chest biopsy/lung biopsy. thank you for reaching out to me. I have fears of the prognosis and the progression.
    I walk 4 miles per day uphill. (treadmill) and am thin./ My mom died of it and my brother has IPF also.
    I seems sad to think of such a poor prognosis…. how long…[Read more]

  • thank you for reaching out.   i appreciate your words very much.  I am thin and walk about 4 miles per day.  live in rural area and not much choice on Pulmonologist.   am getting my biopsy diagnoses this wk and med?

    do u suggest going on meds asap ?

  • Charlene Beck posted a new activity comment 2 months ago

    i cant understand how it cant be genetics…… makes no sense that fam members would have same exact diagnosis…….. yes i do think others in fam could be at risk. You can model healthy lifestyle- not smoking. reg exercise healthy weight. good health habits.
    I just had the chest biopsy and out of ICU in a half a day and discharged from…[Read more]

  • Charlene Beck posted an update 2 months ago

    @renee
    my mom died w IPF and my brother has it severe anad my pulmonologist says mine is not genetic. why???

    • Makes you wonder if they REALLY know whether its genetic or not. More and more people l talk to are saying they too have close family members. The main reason l want to know for sure is because if my granddaughter. Could she someday have a diagnosis of IPF???
      Scares me witless.

      • i cant understand how it cant be genetics…… makes no sense that fam members would have same exact diagnosis…….. yes i do think others in fam could be at risk. You can model healthy lifestyle- not smoking. reg exercise healthy weight. good health habits.
        I just had the chest biopsy and out of ICU in a half a day and discharged from…[Read more]

  • Charlene Beck posted a new activity comment 2 months ago

    i would like that too. I feel overwhelmed. chyna

  • Charlene Beck posted an update 2 months ago

    @jross
    pulse ox can be effected by several factors.

  • i asked for all the tests as PCP did not feel a need….. I just had chest lung biopsy-  awaitn results but appears to be IPF family genetics– I am scared.   prognosis scares me.  help

  • Charlene Beck became a registered member 2 months, 1 week ago

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