• Jofac O'Handlin posted an update 2 years, 4 months ago

    Hi Charlene, and group members.
    I am with the NHS in the UK and presently on OFEV 100mg x2 per day. Reduced from the usual 150’s due to bowel troubles.
    At an annual test ( actually 15 months) I had lost 10% FVC, but they agreed to keep me on OFEV.
    They didn’t need to tell me as my ‘athletic’ ability (such as remains) was telling me loud and clear.
    My training partner of 30+ years has been most tolerant and agrees to do routes from high to low (altitude) . I refrain from calling them runs or even jogs!
    In following the forum I am intrigued by the Laser treatment and its ‘modus operandi’. How does it work?
    As I am across the Atlantic what are the costs of such treatment, and does anyone know if is available in the UK or Europe? I will ask if they have any info at my next consultation.
    I hope to get onto a drug trial, and have an interview and tests in a few weeks. Murphy’s law will likely apply and I will receive the placebo.
    With my recent exacerbation I am concerned about the 6 min walk test.
    I have done a couple of level promenade walks and found it hard on my breathing, although the distance covered was reasonable. Of course it is the change from one test to the next which is the real indicator. Rate of degradation!!
    I have thought of writing a personal history, of my life style, likely triggers and experiences as the IPF has developed.
    Would the forum be interested? Which tread might be most appropriate.
    Cheers,
    Joe

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