Forum Replies Created

  • kevin-olson

    Member
    October 29, 2021 at 6:37 am in reply to: Tracking IPF Progression

    Jon, Thank you for sharing the methodology that works for you.

    In my case, I needed to follow the FVC’s actual result.  When I was first diagnosed with IPF in 2014, my general pulmonologist referred me to an ILD pulmonologist in a different medical center.  From 2014 through 2017 I saw both pulmonologists twice a year which I had four PFTs a year. Two at one medical center and two at the other medical center.  My ILD pulmonologist told me the PFT machines at each location use different parameters to determine the predicted measure. Therefore the FVC% would not be a good measure since you would be comparing apples to oranges. Once I started my transplant evaluation in St. Louis now I had another facility PFTs. For some reason, my St. Louis PFTs were significantly higher than the ones in Kansas City.  I have a friend whose PFTs were the opposite. I don’t know the reason but it made it difficult to compare.

    Wish you the best and your progression be slow.

    Kevin Olson

     

     

  • kevin-olson

    Member
    September 3, 2021 at 9:39 am in reply to: 30 Days of PF: My Journey as a Lung Transplant Care Partner

    Here is the link to Dana’s story.

    Dana’s Story