• Living numbers-free (for now)

    Posted by jenny-livingston on August 18, 2020 at 11:35 am

    Yesterday on Intagram, I shared some thoughts about PFTs and numbers, particularly during this pandemic. Due to COVID restrictions, I haven’t done PFTs since January — that’s 7 months with no idea what my numbers are! It comes as a bit of a surprise (to myself) that I’ve been okay with this. There’s actually been a sense of liberation in focusing solely on my symptoms and how I’m feeling rather than worrying about numbers.

    What about you? Have you done PFTs in clinic during this unprecedented time? Do you have a home spirometer? Or are you (happily or not-so-happily) living numbers-free for now? 

    jenny-livingston replied 3 years, 10 months ago 2 Members · 2 Replies
  • 2 Replies
  • paul-met-debbie

    August 18, 2020 at 2:20 pm

    My cf clinic provided me with a home pft device a month ago. It’s sort of a covidial experiment and almost all Dutch cf clinics participate. Probably some pulmonologist needs data for his or her PhD. It’s a nice little gadget that communicates via an app on my phone. Works fine. Every 2 weeks I fill in an 8 question survey on internet about how I feel and when the “score” is less than the previous time, the advice is to perhaps do a pft and send it in. So far I have done several pft’s in the beginning to calibrate my personal “green” and “yellow” zones. After that the survey’s did not prompt me to do another pft. I don’t know how long my dedication to this experiment will last.

    I have never done many pft’s in hospital so I never conditioned my mind to be interested that much in the outcome. In my experience there is little or no correlation between my pft scores and how I feel or how active my infection is. My pft scores never had any diagnostic or therapeutic value at all. It has always been more of a steady and predictable run down hill over the years, nothing thrilling. So for me there is no feeling of freedom or anxiety connected to the pft as such. My body has always told me more than any test ever did.

  • jenny-livingston

    August 20, 2020 at 7:43 pm

    Here in the US, the CF Foundation has made it possible for some patients to receive home spirometers free of charge. My clinic, so far, has not participated in this program. I understand that some of the machines have had tech issues, causing panic and frustration for those using them. Also, the home machines aren’t consistent with the machines used in the hospital, so a home reading can be very different from what one would expect to get in clinic. I have mixed feelings about home spirometers in general, and I’m okay with not having one at this point.

    Paul, thank you for sharing your experience with us!

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