Hope this finds everyone doing A.O.K

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Morning Everyone. I still have not spoke with Family. I'm not sure what to tell them, My Dr. has yet to tell me whats on the radioligist report, other than the nodulas & it was the receptionest that told me that !! I ask her about the P.F she just sounded exasperated so, I said to myself Screw it !! I did view a lot of You Tube etc.. HOW do I find out what stage I'm in ? hummm. Guess only a Dr. can tell me.If anyone has read my post before you know the details of my problem... Anyway, I guess It is what it is huh ? Maybe asking for answers no one can answer, But so happy I have a place here to at least vent. T/Y all for listening. Hope everyone had a nice Christmas, & Hope to see that you are all getting the best treatment possible. .Take Care.. Nancy

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    Hi Nancy,

    I'm not sure if they have figured out how to "stage" PPFE as compared to something like COPD.  I'm not even sure if those of us who have it can actually say we are in the early to mid stages of the condition.  It sounds like PPFE can stay stable for a good deal of time, but on the other hand, it can progress very quickly. We know that, compared to other lung conditions, this is a reasonably new diagnosis (not a new disease, but now this set of symptoms and fibrosis is named PPFE).  I'm wondering if even those who research the condition and consider themselves experts know how the condition will progress for individuals. The progression and condition may also depend on our genetics, etc.  A personal belief of mine is that any injury to the lung may very well make things progress.

    Best wishes,

    Cheryl  

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      Hi Cheryl, Thanks for getting back to me .You raised  some good questions. Since I was a little girl, I did not live in the best inviorments, I worked in a lot of factory's with lots of Chemicals etc. I live in Fl, so also use lots of insect spray, some of what I used have been banned, Everyone in my family had COPD & Heart problems My Dad had cancer as did one of my sisters..I am the second born of 3 sisters, ALL of my sisters have passed My Baby sister passed just this year in March . only 58 yrs old ! The other 2 sisters were both 60... I am 65 & have no clue why I'm still here & they are gone .I am doing a lot of research now, But STILL have not told anyone what my reports say, Guess I just don't know if I should worry them at this time. I would love to get your opinion on this & anyone else that has one. T/Y again. I can tell you I have a lot of pain from other things that prevent me from really living the life I used to have, But seems i have become worst over the past year or more. Anyway, Best Wishes to you & Everyone. Take Care. Nancy

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      Hi Cheryl, Happy new year... I have a question, I saw my heart Dr. yesterday, & he said Fibrosis in my lungs is diferent the PF.. What's your thought, I mean Hes a Heart Doc, but may know what hes talking about, T/Y I am still looking for answers /Hope to hear soon /Thanks .. Nancy

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    • Posted

      Hi Nancy,

      Happy new year!  I'm sorry, but I'm not sure what to think.  He may have been able to read your CT scan online.  However, a cardiologist knows the heart well; a pulmonologist knows the lungs, but we know that 'the heart and lungs are very closely connected. Not only do they fit closely together in the chest, but they work together to make sure that every part of your body gets the oxygen it needs'.   According to what I've read recently, a radiologist and pulmonologist together can pretty much come up with the correct diagnosis just by reading a patient's high resolution CT scan.  Your best bet is to wait until you can see a pulmonologist.  He or she will ask you all kinds of questions about your symptoms and health, and beforehand, you should make a list of all of the questions that you have.  The doctor should take the time to try and answer your questions.  

      Keep in touch,

      Cheryl  

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    • Posted

      Hi Cheryl, I don't know what to think either !! The Pulmonary Dr that ordered the test to begin with ,never called me I call there, His receptionist said The Dr will see you in MAY , They found 3 nodule on on both lungs the lower lungs  .So was thinking either I have nothing to woory about OR maybe see if I can go else where > I'm just cofused. T/Y for reaching out All my best.. Nancy

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