Forum Replies Created

  • steven-mason

    Member
    May 18, 2021 at 8:17 pm in reply to: Families of IPF/PF patients getting tested

    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 better–because most people do not exhibit post 60 and she does not like the yearly radiation—-but this new dr recommended one.

  • steven-mason

    Member
    May 18, 2021 at 3:39 pm in reply to: Families of IPF/PF patients getting tested

    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 “peculiar death”–and yes it is genetic. Many people without exposure or smoking get it. it is in the code—fix the code.

  • steven-mason

    Member
    April 14, 2021 at 7:24 pm in reply to: New to IPF

    @christie-patient

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

  • steven-mason

    Member
    April 14, 2021 at 7:05 pm in reply to: Hanging Onto Hope as an IPF Patient

    @wendy-dirks

    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?

  • steven-mason

    Member
    March 23, 2021 at 7:22 pm in reply to: New to this forum and kind of confused

    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 disease. Hell–at the beginning–a different physician–used the word “idiopathic”–which at the time I did not know was ancient greek for something like peculiar suffering. What a terrible word. I think someone should write something about marijuana. Here in florida we legalized marijuana for medical purposes–I voted for it. One forum writer wrote about the calming effects of morphine–beyond pain–why not consume a medical marijuana cookie? What is the consensus of the med community 0n this issue–or is there a consensus?

  • steven-mason

    Member
    March 18, 2021 at 10:25 pm in reply to: Dad was placed on end-of-life care

    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 –either by nature or education are taught to hold it inside.

  • steven-mason

    Member
    March 17, 2021 at 9:02 pm in reply to: Life span

    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 end stage—less than 6 months to live. So what have I done? I went to my primary shortly after my dad’s death (2003) and had a c-scan ran. It was negative. In 2019 I went back for another c-scan also negative. I also “blew” into the breath machine—which by the way they do not explain clearly. when you think you are no longer exhaling–you actually are because the instrument is so accurate. Diagnosis and early diagnosis is everything. My dad’s physician told him this nasty stuff was growing in him for a decade. How would he know that? I do not know–but he is an expert and was strident in his statement. Everyone should keep the faith.

  • steven-mason

    Member
    March 12, 2021 at 9:10 pm in reply to: Living Our Lives

    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?

  • steven-mason

    Member
    March 12, 2021 at 9:04 pm in reply to: Living Our Lives

    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 hot–low 80’s? Keep doing what you are doing.

  • steven-mason

    Member
    March 9, 2021 at 9:23 pm in reply to: Living Our Lives

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

  • steven-mason

    Member
    February 26, 2021 at 9:14 pm in reply to: What should I expect as IPF progresses?

    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. One lung collapsed and he was placed in a drug induced coma on a ventilator. My aunt–his sister begged me to disconnect support—I refused. The dr who I admired greatly said my dad would decide his fate. He lingered days—one dr wanted to move him to hospice but the treating physician overruled him stating my dad would not survive the transport. I watched the meter in his ICU room—like in a trance—some people can survive quite long with limited oxygen. I hope you do not think I am macabre–but considering there is a strong genetic component—I have read about death with dignity—colorado—oregon etc.

  • steven-mason

    Member
    February 23, 2021 at 9:47 pm in reply to: Life span

    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 a private practitioner that he had end stage ipf. My point is that cases like his greatly reduce the prognosis–and back then there was no treatment. He was put on a drug to suppress his immune system (from the mayo) which hastened his demise. From reading this forum things have greatly improved.

  • steven-mason

    Member
    February 3, 2021 at 7:30 pm in reply to: Reading Suggestions for Patients with IPF

    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 might look to oregon or other states so I do not pass the way my dad did in a drug induced coma on a respirator. He was retired U.S military and seeing such a physically strong man struggle to breathe and walk still causes me trauma.