Pulmonary Fibrosis News Forums Forums Welcome Lounge Trying to think “Outside the Box”……?

  • Trying to think “Outside the Box”……?

    Posted by george-poulsen on April 19, 2024 at 3:39 pm

    OK, I, an 84 year-old non-professional guy with half a brain and IPF, get a bit focused when it comes to trying to find out whats messing with my health (and life) and especially when educated professional people file my case in a box called “we just don’t know the source but its all being worked on”, and the prognosis seems like a really negative direction, but meantime trying one of the only two drugs approved, because there just aren’t any others, and maybe oxygen will make life a bit easier along with pain killers if pain is an issue too. This won’t save a life but just maybe, might buy enough time while a new solution is found we hope!

    So when a majority of the cases seem to reside in that box called “we don’t know”, and we then determine that those cases aren’t specific enough or large enough population to really get the interest of a large profit oriented pharmaceutical corporation, we know we’re going to have to get busy and research in our own interests to see what they don’t know about “me” that could have triggered all of this anyway.

    They didn’t seriously really want to hear my whole personal history when they asked about it and they had a class or meeting or whatever and just didn’t have time to get it all down either, so maybe I have to reconstruct my own history around the timing of things that began to indicate Lung Fibrosis. Besides I don’t hack/cough as much when sitting quietly at this pursuit.

    Lets see, could it be a lifetime of sinus infections from childhood on up, or maybe smoking in high school, and swimming team in heavily chlorinated pools or rheumatic fever in college? Or how about numerous surgeries in later life that seemed about joints like knees/hips/shoulders? Maybe that Air Force Surgeon who removed a small tumor on my arm and later said “Hey you really don’t scar very well do you.” How about too much sawdust when pursuing my wood working hobbies or walking in my attics with plenty of friable asbestos? Could it have been too many anesthesias along with potential introduction of bacteria into the breathing airways? Could it have been that one touch of pneumonia after a back operation or even the dehesion and infection after an open heart surgery or mishandling of the lungs while open heart? Possibly the GERD that has haunted my esophageal area for years that might have been regurgitated or the hiatal hernia that went with the Gerd. But wait, those were in the past,what about more recently moving family to areas that are absolutely an Allerigsts dream for patients that like to kick off their immune responses frequently, or even one last shot that maybe identifies a tooth root abscess that had moved well into a large pocket in the jaw bone and possibly moved some bad infection to the lungs over time?

    In my research using available internet tools all of the above have been mentioned about me in one way or another and all of the above have influenced my life at one time or another, and all of the above apparently can influence our immune systems that can go nuts when irritated. I have become intrigued by the many things that can influence or cause our immune systems to react negatively. I am also intrigued by trying to deductively identify that point in my life when these incidences that cause wounds and infections and scarring from their healing activities may have occurred because if I can identify that point or events then just maybe some corrective action may be initiated to stop the initiating process at the source?

    I have only written this because I believe we all have some time to do some serious thinking about “why me” and just maybe the identification and solution may lie in our own hands more than we think? Maybe if shared, others might also trigger their own thinking to be more “out of the box” .

    george-poulsen replied 1 month, 1 week ago 1 Member · 0 Replies
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