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    • #30292
      Kevin’s FVC measurements and percentage decrease over four years. (Courtesy of Kevin Olson)

       

      On multiple occasions throughout the last 5 years of living with idiopathic pulmonary fibrosis (IPF), I’ve wished for easy and practical ways to track my disease progression. I have explored different apps that help patients track symptoms, easily quantify certain measurements such as pulmonary function tests or manage medications but none ultimately helped me develop a “big picture understanding” of what was going on with my IPF.

      As you can imagine, when my co-columnist Kevin Olson shared his experience of tracking his IPF progression in a recent column called, Why I’ve Used Multiple Models to Track My IPF Progression; I was pretty excited to hear from another patient who figured out a way to do this!

      Check out Ken’s column which includes a number of different visuals to help readers further understand how he tracked his  IPF progression prior to receiving his transplant. I’d also love to hear your thoughts: do you strive to track your IPF progression? If so, what methods or devices work for you and allow you to track the progression of this disease?

    • #30313
      Jonathan Poland
      Participant

      I am tracking FVC % rather than actual volume because there is a normal decrease over time.  DCLO is more important to me than FVC anyhow.  The actual FVC volume decrease since the beginning of my journey is roughly 8 oz (i.e. one cup of air).

      Incidentally, the increase starting around 1/1/2020 is when I was in pulmonary rehab.  I credit it with my recovery of lung volume in 2020.  Even though I do cardio exercise 4-5 times a week since leaving rehab, the disease is now catching up again.

      Jon Poland

      • #30317
        Kevin Olson
        Participant

        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

         

         

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