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  • rheal

    Member
    February 24, 2021 at 12:58 pm in reply to: Life span

    I recently had the same discussion with my Respirologist. I was diagnosed IPF ( they believe familial) 2017. Have been taking OFEV. My PFT is every 6 months with an xray every year. My xray shows no advancement of the scarring and my #’s on the PFT have not decreased. I am not on oxygen. But the effects of this Disease are ever present.  I have one brother and one cousin also diagnosed with IPF. My brother is recently diagnosed and my cousin is at 7 years. My cousin is on OFEV and oxygen.  My mother , three aunts and one other cousin (all deceased) all had IPF. They were dealing with this disease before any drugs were available. My mother and aunts all surpassed the 5 year mark ranging between 7 and 11 years. Only 1 was on oxygen.  My other cousin though passed while waiting for a lung transplant at 3 years.  It just goes to show that it certainly does mean that we all are individual and subject to the fate of not really knowing. I am grateful for being here, walking , talking and still breathing :-). And have the determination that whatever they say the expectancy may be…they will still be wrong. We have a truly awful disease but we are not alone in this world with our plight. I truly hope that you all surpass any estimate and you all live your life to the fullest and happiest that you can make it, given the hand you have been dealt. Cheers to you all.