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steven mason

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@smason

@charlene-marshall You referenced genetic testing–but I read an article that stated the mechanics of testing is in its infancy and the results unclear. On the other hand I sent an e mail to a company called blueprint who may conduct such testing. My question is–whether there is an accurate predictor of acquiring ipf? View
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    steven mason replied to the topic Families of IPF/PF patients getting tested in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 2 months ago

    Daebbie–this is my issues with the hr-scan–I feel like I am going onto a coffin. I try and think of women in bikinis–but still I think of coffins. Second–I do not like the radiation. Third–I had one in nov 2019 and was negative—but now you are giving me second thoughts. Thr dr I saw in nov 2019–said the breath function test was…[Read more]

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    steven mason replied to the topic Families of IPF/PF patients getting tested in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 2 months ago

    Here is the answer to your question. If you like surprises then don’t get tested. But if you are like me–and you do not like surprises then don’t abate. Guess what——I got tested today–breath test only—I passed–97% before inhaler and 100% post. I plan on repeating this routine yearly—-except for the radiation scan. This is called a…[Read more]

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    steven mason replied to the topic New to IPF in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 4 months ago

    Christie–if ipf is genetic based–part of the code–how do we know that the defective code will not attack the new organs?

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    steven mason replied to the topic Hanging Onto Hope as an IPF Patient in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 4 months ago

    Wendy–your words especially your last paragraph were very thought provoking. There is a book I have read about—but have not read called “On death and dying”–by elisabeth ross. I wonder whether it would help?

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    steven mason replied to the topic New to this forum and kind of confused in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 4 months ago

    My fathers physician at the mayo also said do not look at the internet. But I do not agree with that–yes it is daunting especially without any medical background. But I would prefer to know. The dr told my dad it was fine to drink his scotch–my dad was greatly depressed. There was a post about wine–and how to deal with the stress of this…[Read more]

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    steven mason replied to the topic Dad was placed on end-of-life care in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 4 months ago

    Vishal–your description is so descriptive it rattled me. I lived through this but my dad was in a drug induced coma.I wonder why. I think it was because one of his lungs collapsed. But it seems so contrary that your father could and can communicate with you to the end. I actually think it is good to hear these stories–since so many of us…[Read more]

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    steven mason replied to the topic Life span in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 4 months ago

    Jim–I am so sorry to hear about your prognosis. But for many the timing of prognosis is everything. Let me re-tell you my story. My father died of ipf in 2003. His sister died of ipf approx 2018. MY dad was 72 when he passed–my aunt was over 80.My dad was misdiagnosed by the veterans administration–when he received a correct diagnosis he was…[Read more]

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    steven mason replied to the topic Living Our Lives in the forum Hobbies & Projects 1 year, 5 months ago

    There was a book I looked at a few minutes ago–thinking about buying called “code breaker” It is all about eliminating flaws in our human code–something like that. It sounds complicated–but I wonder whether it has promise for ipf?

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    steven mason replied to the topic Living Our Lives in the forum Hobbies & Projects 1 year, 5 months ago

    Wendy–I am actually typing this for the second time–which should tell you something about my key board skills. Your initial post was from nearly 2 years past. I do not have ipf–but I suspect that optimism is strong medicine. I have often wondered whether it is a learned trait. I am sorry you are in lock down–I live in florida and today was…[Read more]

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    steven mason replied to the topic Living Our Lives in the forum Hobbies & Projects 1 year, 5 months ago

    Reading these posts brings back many memories. Is it possible to get an update on how wendy and lorraine are doing?

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    steven mason replied to the topic What should I expect as IPF progresses? in the forum Caregivers and Spouses 1 year, 5 months ago

    This is how my father died. He had 2 physicians–one with the mayo and one in orlando. The mayo doctor was candid and kind–he said the fortunate ones with IPF die from a heart attack—lack of oxygen. It is a quick and painless death–per his description.. The unfortunate ones end up in the hospital. My father had a strong heart–cardio system.…[Read more]

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    steven mason replied to the topic Life span in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 5 months ago

    I assume that these life expectancy estimates are based upon real statistics. My father died from IPF in may 2003–and my recollection was that the 3-5 year window was what was contained in the literature back then. But so much of this is based upon when the diagnosis occured. My dad was misdiagnosed at the va –and on december 20 2002 was told by…[Read more]

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    steven mason posted an update 1 year, 6 months ago

    @charlene-marshall You referenced genetic testing–but I read an article that stated the mechanics of testing is in its infancy and the results unclear. On the other hand I sent an e mail to a company called blueprint who may conduct such testing. My question is–whether there is an accurate predictor of acquiring ipf?

    • Profile picture of Charlene Marshall
      Charlene Marshall replied 1 year, 6 months ago

      Hi @smason , thanks for writing. Yes, I don’t know how advanced the research and/or testing to determine genetic links to IPF is. It was also my understanding that it is in the infancy stages, though I am in contact with a family who has set up a clinic to better understand this link, and I believe they said it was out of Mayo. They were able to…[Read more]

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    steven mason replied to the topic Reading Suggestions for Patients with IPF in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 6 months ago

    My father died of ipf in 2003 and his sister died from it several years later. The genetic component of this I obviously find interesting. Charlene—I have been following your posts–I don’t know—perhaps a year or two. You bring much to the issue. I underwent a c-scan a year ago–which was negative. I hope I am not morbid but if I get it–I…[Read more]

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    steven mason became a registered member 1 year, 6 months ago

    • Profile picture of Mark Koziol
      Mark Koziol replied 1 year, 6 months ago

      Hello Steven, thank you for joining your pulmonary fibrosis forum. Welcome!

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