Hey Again Everyone, Is there such a thing ?

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Hello Again Sorry to be a Pain, Is there such a thing as Fibrosis. & Not PF ? or IPF ? Still have not seen Pulm Dr. Only my heart Dr yesterday. Hes says Its Dif ? ANYONE ?? T/Y & again, The Heart Dr did say he noticed how tired Un able to raise my arms & weakness. So Still no real Label if there is one, So Don't know  I'm Reaching out fo opinions Still smile T/Y .. Nancy

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  • Posted

    The doctor who said this to you specializes in hearts therefore, you need to see a Pulmonologist.  What has the Doctor you have seen said about your heart?  In other words, what have you been diagnosed with?  My husband has been diagnosed with IPF but he has no issues with his heart.  Please find a Pulmonologist

     

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    • Posted

      Hello rebby, It was My Pulmonoligist who sent me for the CT , He never called with results so I called his office, The receptionist told me He will see me in May. The CT says Fibrosis, as well as nodule in each of my lower lungs.. Heart Dr. said there is a dif between PF & Fibrosis. So back to square one, Not sure I never heard od just Fibrosis , but what do I know  T/Y for your input,, Heart Dr did say how weak & how he noticed how I can't hold my arms up & just tired all the time, I have a racing heart, Etc.. I do need a nitro at times .Again Thank you so much All the best, Just wish I knew more is all  sadly I just feel like my Pulm Dr is not taking the time. I think May is a long time for me to wait.  Sincerly,, Nancy

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    • Posted

      Nancy,  do you live in a area where there is more pulmonologists than just the one you saw?  I don't understand this cardiologist(?) who said there is a difference between PF & Fibrosis.  Possibly you heard it wrong?  Do you have access to Facebook?  There is a site on Facebook that I get so much information that may help you clear some things up or get better suggestions than mine.  Do you go alone to these doctor visits? By no means am I a doctor but I think you need someone to be your advocate when you go to these appointments.  Also, call your Pulmonologist's office and tell them you have so many questions and May sure seems to be a long time.  In the mean time if you can, find out if there is another Pulmonologist who specializes in PF.  Let me know if you have access to Facebook.

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    • Posted

      Morning rebby, Yes I have a lot of those Drs in my area, Yes I have access to Facebook, Where do I look for that site you are talking about ? T/Y I would love to look. Many Thanks ... Nancy
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    • Posted

      Nancy,

      On Facebook, search for Ultimate Pulmonary Wellness, COPD, PF, PULMONARY HYPERTENSION, ET AL.  a Noah Greenspan is the moderator on this site.  Hit the "Join" and they will verify you and then you will have access to everything.  There is so much information to help you.  Let me know if you have any problems.

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  • Posted

    Nancy:

    There i'm sure there are different kinds of fibrosis but you really have to see your lung specialist.

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    • Posted

      Hi there Bob, I suppose BUT he said May ... So trying to figure it all out. So maybe it's not so bad ? IDK. wink I know Fibrosis is scarring so Can it just be that ? Take Care Bob & T/Y so much .. Nancy

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  • Posted

    Hi Nancy, There are many different type' of Fibrosis, there is even a Cardiac Fibrosis which your Cardiologist may be referring to. there are types of PF that start in the Lower lobes of the lungs, and one that starts in the upper lobes. Both are considered different from each other. I would check with a Pulm, doctor along with your cardiologist as well. I did and my heart is clear of any fibrosis, but my upper lobes are not. I have been diagnosed with Pulmonary Fibroelastosis, It is also known as Pulmonary Fibrorblastosis, also as PPFE. but generally as Interstitial Pulmonary Fibrosis.

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    • Posted

      Hi there rich. Good info you gave me Thank you !!!  As far as the lungs go, Its both lower for me,   Thank you so much I will look into all that. Hope you have a good day . Nancy
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