This topic contains 3 replies, has 2 voices, and was last updated by  Mark Koziol 2 months, 3 weeks ago.

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  • #19364
     Mark Koziol 
    Keymaster

    As I approach the upcoming week I am experiencing some anxiety. I have my 3 ½ year checkup with my transplant doctor and team. So far, I have completed my labs and chest x-ray, the only remaining test is the dreaded pulmonary function test (PFT). All tests have come back normal, and I am happy with my tacrolimus level, which is at the required trough stated by my doctor.  I know this makes her happy, which in turn makes me happy. My chest x-ray was also exceptional! Now, I have to worry about completing my PFT’s. These tests I believe are exhausting for people with healthy lungs, let alone someone who suffers from a chronic lung condition like pulmonary fibrosis (PF).

    My transplant team would like for to me to complete my PFT’s twice a day. Truthfully, I have not done these twice a day for quite some time. I have two hand-held, computerized spirometers which are both tricky to use but I do prefer one over the other. The latest one I bought was a waste of money. The numbers are way off and the device is finicky to use. The one I use regularly has a woman’s voice, she is annoying, especially when I complete the test improperly and have to repeat it. Being the 51 year old immature man I am; I call her names. She never talks back though.

    Kidding aside, PFT’s are the initial tool used for the diagnosis of chronic rejection and aspergillosis. A significant drop will initiate further testing to diagnose what is causing the drop. I love to have improvements but I am at the stage now where I am almost at my plateau. My improvements are minuscule at best. My goal is to hit 80% on my forced expiratory volume (FEV) score. I am at 77% and hope I can hit this milestone. I work hard and hope someday it happens. As the recipient of a single lung transplant, I am working with one lung. I understand there are some limitations but I have adjusted my training to compensate. I get winded easier than a double lung recipient and also monitor my oxygen saturation when I work out. When walking for extended periods of time my saturation hovers around 93%.

    The forced vital capacity (FVC) is also measured during my quarterly assessment. The FVC measures the total amount of air exhaled from the lungs after taking the deepest breath possible. I would love to improve my FVC score as well! I have not been tested for any other PFT related tests since my initial evaluation for transplant. My doctor told me that other tests are not necessary until there is a problem and all the information she needs, she receives in the FVC and FEV reports.

    Please share your experience with PFT’s.

    How do you feel after you complete the tests?

    Do you wish there was another method to measure your lung function?

  • #19399
     Marianne 
    Participant

    I have only done these tests one time while undergoing tests.  I did so bad they made me redo some of the tests.  Pulmonary doctor at the time told me I only scored 50%.   I did not like the tests.  They told me 90 year old did well on the tests.  Hope I don’t have to do these tests very often, but have a feeling they might be every 3 months after going on meds for IPF.  Yes, I wish there was another method to measure lung function.

    Marianne

  • #19406
     Mark Koziol 
    Keymaster

    Hello Marianne, thanks for reading and commenting. Tell your doctor to keep his comparisons to himself. Yes, you will probably be doing these every 3 months. They are not fun and are totally exhausting. Try not to eat before you go, I feel we do better on an empty stomach. Don’t worry you are going to be alright. Don’t stress about this. You were probably under the weather the first time you did it. Mark

  • #19407
     Mark Koziol 
    Keymaster

    Hello Marianne, thanks for reading and commenting. Tell your doctor to keep his comparisons to himself. Yes, you will probably be doing these every 3 months. They are not fun and are totally exhausting. Try not to eat before you go, I feel we do better on an empty stomach. Don’t worry you are going to be alright. Don’t stress about this. You were probably under the weather the first time you did it. Mark

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