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Chris

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@chris-1964

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    Chris replied to the topic Life span in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 day, 11 hours ago

    hi kim, what haritaki dose do you take?  I got 750mg and take one a day.

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    Chris posted a new activity comment 1 week, 3 days ago

    NOPE. And right now, it’s “just” PF. But I started having mild sob last year, mentioned it to doc who sent me for xray. Radiologist saw it and I was send for HRCT, which confirmed mild PF both lower lungs.

    As to covid, if you recall, when the pandemic hit people who had been on a ventilator ended up with “lung scarring”. I dont recall it being…[Read more]

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    Chris replied to the topic Symptoms vs O2 levels in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 week, 3 days ago

    thanks to everyone for the replies it really helps.

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    Chris replied to the topic Life span in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 week, 5 days ago

    Congrats Kim!  Was hoping for you to get a good result. Do they also check your PFT? In my case they are watching the DLCO.  Also, how long before you think the Haritaki made any difference in how you feel? My lungs feel uncomfortable a lot and the cough comes and goes.

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    Chris replied to the topic Life span in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 weeks, 3 days ago

    Thanks Kim. I ordered some from Amazon after reading up on it and making my own decision. It claims to be a beneficial supplement so why not. Also just started low dose zinc and NAD+. It’s important to note that many things have been cured in mice that didnt translate in people. But, who knows!  Be interesting to see your CT result. I have one…[Read more]

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    Chris replied to the topic Life span in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 weeks, 3 days ago

    Kim, can u send a link to that? I cant find it through google. Thank You!

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    Chris replied to the topic Saw PF on xray now what in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 weeks, 3 days ago

    Thank you for your service Mike to our country. I had 2 veterans in our family, one WW2 medic Italy/Germany, one cold war (atomic vet!).  It’s a big regret I didnt sign up myself and I look up to everyone who has served.

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    Chris replied to the topic Saw PF on xray now what in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 weeks, 3 days ago

    Hi Folks, I was just re-reading this thread, very helpful.  As an update, despite getting the booster, I caught symptomatic Covid in January. Took paxlovid and was better in 1 day, but when the 5-day pax ran out, I got sick again but again only mildly and it cleared on its own. My chest symptoms are unchanged. Thank God

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    Chris started the topic Symptoms vs O2 levels in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 weeks, 4 days ago

    Does SOB symptom always include lower Oxygen levels?  How does one know if O2 level is low besides using a Pulse Ox?

    Also, how does one know if they might be having an exacerbation event? Is there such thing as a mild exacerbation (that still should be seen), or are they always pronounced (as in need the E.R.) ?

    Right now it’s only constant…[Read more]

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    Chris replied to the topic Life span in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 weeks, 4 days ago

    Everyone is different, even with the same flavor of PF. There is also a lot of research and a couple new meds coming online in next few years. One of which is considered a “breakthrough” drug by FDA, and is in Phase 3 trials right now.

    Here is a big study that has a lot of info on this.

    QUOTE:  A recent analysis from the US Medicare database…[Read more]

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    Chris replied to the topic Covid causing pulmonary fibrosis in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 3 weeks, 4 days ago

    Some patients dont have side effects from one or both of.  Have to try first.

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    Chris replied to the topic Lung Biopsy in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 weeks, 4 days ago

    Hi Denise, how did your treatment plan change with the diagnosis from the biopsy? I dodnt even think there was much treatment options beyond monitoring, ofev/esbriet and oxygen if needed? But I’m new to this and we dont know what caused my PF yet.

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    Chris replied to the topic Lung Biopsy in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 1 week ago

    I read somewhere that there is a slight risk of biopsy triggering exacerbation. But this is a question for at least 2 docs, if they don’t concur, maybe get an appt with a 3rd. When I get bad, if I were told a lung transplant were dependent on a biopsy, obviously that weighs heavily in favor. But I would ask “if you’re removing my lungs anyway, why…[Read more]

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    Chris replied to the topic AND… I found one more… early, but interesting they call it potential CURE in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months ago

    This gene development doesnt look like it went anywhere since 2017. Maybe in research it’s helping. Not sure.

    It’s the OTHER post about a new med BI 1015550  that is now in Phase 3 trials. Here’s the link:

    New Treatment in Phase 3 looks like it might be promising – Pulmonary Fibrosis News Forums

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    Chris replied to the topic AND… I found one more… early, but interesting they call it potential CURE in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months ago

    This one I found out was published in 2017, and cant find more as yet. I think this is a longer way off but it does appear they may have found a gene – AKAP13 -that directly contributes to fibrosis, and other research is working on a way to shut that down. When I was in school years ago, they told us that the only gene therapy in use was to halt…[Read more]

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    Chris started the topic AND… I found one more… early, but interesting they call it potential CURE in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months ago

    “Health scientists in Leicester and Nottingham have discovered a gene which could lead to a cure for idiopathic pulmonary fibrosis.”

    I learned in school 12 years ago that at that time the only gene therapy was to halt cystic fibrosis. That isnt a cure but a VERY effective treatment. Sounds like this one is also getting after the fibrotic process…[Read more]

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    Chris started the topic New Treatment in Phase 3 looks like it might be promising in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months ago

    Hi all, I posted this yesterday but cannot find it, so trying again. I found this and among 3 new treatments in development it sounded the most promising. it worked well in phase 2, just look at the numbers…

    https://www.boehringer-ingelheim.us/press-release/fda-grants-bi-1015550-breakthrough-therapy-designation-idiopathic-pulmonary-fibrosis

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    Chris replied to the topic Saw PF on xray now what in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 months, 1 week ago

    Well I got the covid booster. Already had flu vax in Oct.  Been wearing N95 when in crowded spaces like stores or when working near dust etc.  Trying to get a little more exercise too. Not much more I can do until the followup imaging and tests in the Spring.

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    Chris replied to the topic Saw PF on xray now what in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 months, 1 week ago

    Thanks Rand, I dont have IPF yet, nothing diagnosed. Next Spring we repeat HRCT and PFTs etc.  It could well turn out to be that, but at this point could also be scarring from almost anything.

    Even though it barely shows, and lungs sound good, I can “feel” my chest is not right. I wonder if this is always the case with PF? Does it always feel…[Read more]

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    Chris replied to the topic Saw PF on xray now what in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 3 months, 1 week ago

    hi adele, I had a bunch of blood work,

    ANTI SCLERODERMA, MYOMARKER PANEL 3, SEDIMENTATION RATE, AUTOMATED, CYCLIC CITRUL PEPTIDE AB, IGG, RHEUMATOID FACTOR SCREEN, ANTI NEUTROPHIL CYTOPLASMIC ANTIBODY, anti smith antibody, scl-70 antibody, smooth muscle antibody screen, antibody nuclear hep2, .

    I dont think these test turned up anything.

     

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