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PPFE

Posted , 32 users are following.

CherylH
CherylH

Has anyone been diagnosed with pleuroparnchymal fibroelastosis (PPFE). Pulmonologist and radiologist think I might have it. Not much written on it - fairly new to the medical community, I believe. Prognosis doesn't sound good. Thank you.

Sherry (USA)

9 likes, 335 replies

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  • CherylH
    CherylH

    Posted

    Hi there,

    I do follow the Facebook PPFE site, but also like this site. To my Australian friends, was your flu season as early and bad as they tell us it was (USA news media telling us to get flu vaccination early)? On another note, in July I had a PFT, and thankfully, everything seems to be holding steady. Pumonologist still isn't 100 percent certain I have PPFE. Could be histoplasmosis which is fairly common in the area I live in. But, he does say the CT scan is pretty indicative of PPFE. Well, I could be writing to myself, but I thought I would post on this site to see if it is still active; it is close and dear to me and was so helpful when I was first diagnosed.

    Best wishes,

    Cheryl

  • CherylH
    CherylH

    Edited

    Hi,

    Is anyone still monitoring this site. I thought I had posted something to it the other day but can't see it today. I do follow the PPFE Facebook site; however, this site helped me tremendously when I was first diagnosed. Hate to leave it for good. On another note, I had my PFT in July and everything is status quo. My pulmonologist still can't confirm my diagnosis with 100% certainty. Could be histoplasmosis (common in my area) or fungal infection -- he will not do a biopsy due to complications that could happen. Anyhow, we all live with uncertainty. Hopefully, I am not writing to myself, and someone comes across this site again.

    Best,

    Cheryl

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