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  • Pulmonary Function Tests

    Posted by Sailor on February 27, 2024 at 3:31 pm

    I’ve been testing between 3 and 6 months since diagnosis with IPF in 2020. Each test is becoming more and more difficult to recover from with my lungs hurting with each breath. What is the value in testing when it makes my quality of life a struggle just to give an indication of my lung function capacity? My last test was in October. Since then I have had the flu and pneumonia. Coughing is near constant and I dread being put through a procedure that increases my pain with no benefit to me. I know in order to qualify for my treatment and medicine I am expected to endure this. I have rescheduled testing twice now. The VA has threatened to without treatment and medicine if I refuse.

    george-poulsen replied 1 month, 2 weeks ago 2 Members · 1 Reply
  • 1 Reply
  • george-poulsen

    Member
    February 27, 2024 at 5:56 pm

    Sailor, I share your concerns. I have had this thing far too long now (maybe 10 years by old scans)and the testing is one I’ve questioned many times. They seem to push too hard and too long for my comfort because any total exhalation of breath for the PFT test results in my coughing like mad until I can get it under control (with a bit more of oxygen between puffs) and yes it leaves one winded depending on condition.The last test I took in October last year was at UTSW in Dallas and the attendant was trying so hard to get me to get a good reading that we wound up 45 minutes late for the doctor and by that time he had moved on to his very full schedule. They tried but just not helping me in the meantime. Gotta remember I am the customer guys, no matter how you look at it, and the customer votes with feet.

    Now I am dealing with my 4th Pulmonologist and a different testing facility and will have my next test at a different hospital, because some do tend to get a good reading without so many retries. Nobody’s fault really, just me trying to find a better fit with the testing and you’re right because my belief is that it only really provides results for others to look at and no curative for me at this time.

    PS I am 84 and too old now for lung transplant and do not see benefit in the drugs offered for my situation as the added time they offer won’t really benefit me much. I will instead spend my time thinking of all the positive things that a good life and wife have provided for over 60 years. Your case may be different based on the type of IPF you have and your age and condition.

    Lastly, I found years ago that I could use local doctors (with my medicare and own resources) and still obtain my meds through the VA. You may also be obtaining your O2 concentrators and any drugs thru the VA as well. I’m not certain but I am almost sure you can request a change of facility or speak with one of the counsellor/advocates to air your concerns about the level of help you are getting and consideration for you as a person and as a guy who has put it on the line for everyone else and who just wants a little consideration.

    I also have begun using a stand-up little stair stepper each morning to begin building my heart and lungs a bit as well as lifting some ridiculously small 4 pound weights to try to rebuild a bunch of muscle I lost between last June and Novemebr (180 forever and right down to 154 now), maybe an exacerbation but I did have a stent put in last August too. My wife also swears that she thinks all the coughing every day has cost me the weight since it is like doing sit-ups all day. Actually I feel a lot better since this would be my old fighting weight from high school and military. I mention this only because I do sense a slight improvement in my overall constitution and have even begun working the Sudokus in the paper each morning to test my mental cognitive level and I do think it is improving! Best I can say!

    I’ve accepted that I can’t stop this for now, and that a great many people are working on new drugs and approaches and hopefully I will l see something that works before I have to cross the street. So I spend a great deal of my available time in researching all I can in the IPF areas. Amazing whats out there to give you good reason for hope if you just shake yourself up a bit and say time to get started. Even those guys on Omaha beach had to say time to go guys, “Lets hit it!”.

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