This topic contains 1 reply, has 2 voices, and was last updated by  Paul met Debbie 1 month, 1 week ago.

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  • #13065
     Tré LaRosa 
    Keymaster
    1. Do you get anxious about your PFTs? Why or why not?
    2. What do you in preparation for it? Both in the days and minutes before?
    3. Are your PFTs stable? Feel free to not share about this if you’re not comfortable.
  • #13080
     Paul met Debbie 
    Participant

    LOL, I had to look up the term PFT to find out that it means lungfunction test.

    Anyway, I did those in the past until I found out that the only thing they do with it, is file it. I have never seen any medical action (treatment, diagnosis, medication) to result from (only) a PFT. It just shows a gradual decline in longfunction over time, something that I can tell myself very well without doing the test and is to be expected, hey you don’t have cf for nothing now, do you?

    My longfunction declined in my life from around 65% FEV1 when I was 25 to 31% now (will turn 56 this month).
    So, on average, it went down 1% per year, which is not bad. Last 3 years it is stable however, since I use twice daily diclofenac (50 mg) to inhibit the inflammation. Since that, I have no exacerbations anymore and only use some doxycycline daily to keep the infection down. Before that, I used tons of antibiotic pills of all kinds (until nothing worked anymore) and in the three years before I started diclofenac I had 6 intravenous treatments every year! Doctors were totally speechless but in fact, had they done their research, they could have known that continually treating cf patients with nsaids (mostly ibuprofen, but I found out that diclofenac is better) had been tried before with good outcome, but only in local cf centres and it never became protocol for some reason. Ask your doctor about this! But I digress. Back to PFT.

    My anxiety about PFT is that I don’t trust those machines to be absolutely clean. Mostly they schedule cf patients at the end of the day, so they can clean the thing afterwards. Made me think what germs could be spread in my lungs from all the patients that went on the machine that day before me. Tests have shown that the bacterial filters they use are not waterproof, they could even cultivate germs on the other side of the filter. And other desinfection protocols (alcohol etc) could not garantee sterilisation either in all cases. (I researched this several years ago). So, I made the decision to not go on a hospital pft machine anymore.

    I now own a little device on which I can blow a FEV1 score at home myself.
    I bought it right after I did my last hospital pft and tested it the same day at home, to calibrate it to get the exact same result as in the hospital.
    Since then, I measure my pft (FEV1, which is the most important value anyway) at home, not more than 4 times a year, in my own privacy, on a device that is clean (or at least only harbors my own pet-germs).

    Well, that’s all I have to say about PFT, hope it helps.

    Bless you all.

    Paul

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