steven mason

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]

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]

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

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?

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]

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]

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]

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?

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]

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

Here is another part of the process that I did not like–and still do not like. My father thought he could predict the future so he executed a “living will”—but when his lung collapsed they asked him (imagine that frantic situation) whether he wanted support—he nodded yes. The hospital staff knew he had a living will and kept asking me for…[Read more]

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]

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]

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]