This topic contains 4 replies, has 3 voices, and was last updated by  Timothy Black 1 month, 1 week ago.

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  • #19105
     Timothy Black 
    Participant

    Using the treadmill I built up to an hour  3 x week set at 2.3 mph. After a couple months of “feeling slow improvement” I began to feel my energy drain away. I always wore an oxygen tank on set at 2. I didn’t feel short of breath. I began to feel weak like I wasn’t getting the energy I needed. My oxygen level was 88 at the lowest but usually 94 – 96. Follow up at the lung clinic / doctor my lungs sound clear and normal. I am going in for a CT Scan and some blood tests. So here are my questions for the experienced to help me with.

    1) On Breo 1 x day. On Ventolin inhaler but I thought that I should take it when “I feel” like I need it. The Rx says 2 puffs twice a day. Should I become a regular user?

    2) Should I be using the treadmill for less time and build for a higher mph? Am I doing it wrong or inefficiently?  Same with getting back on my bicycle. Advice?

    Thanks again,

    Tim

     

  • #19107
     Timothy Black 
    Participant

    And my apology. A little “off” lol. I wasn’t aware of the Ultimate Pulmonary Wellness and other things available here. Beside this new pulmonary, I am recovering too from another injury five years back. I’m a great learner but I’ve been slowed down.

  • #19108
     Charlene Marshall 
    Keymaster

    Hi Tim,

    Thanks for writing, and sharing a bit about your exercise regimen with us! I know exercising is so tough with this disease so kudos to you for keeping it up and continuing to try 🙂

    Yes Pulmonary Wellness by Noah Greenspan seems to be a very popular exercise program for many of us living with IPF. Have you tried it? I haven’t yet, just simply because I haven’t felt the need but likely will someday as my lungs continue to deteriorate. I can’t endorse it of course but I know a lot of people who have been happy with the program. Your oxygen levels seem good at 94-96, especially during exercise but probably good to keep the oxygen on. As for your questions:

    1. I also have ventolin prescribed as a PRN (as needed basis, basically) and I don’t find it does a lot for me. My script says two puffs every 4 hours but I have to admit that I haven’t really stuck to that. I was on a couple of steroid inhalers too, but had to change one of them (Symbicort) due to not being able to take a deep enough breath for the turbuhaler. Do you find the ventolin helps the shortness of breath or any other IPF-related symptoms you get? I don’t imagine taking it faithfully would cause any harm but definitely work checking with your doctor about.

     

    2. I don’t have much to contribute to the exercise regimen unfortunately. Do you @mark-koziol? I walk on the treadmill with oxygen for about 30 minutes and don’t have a bicycle yet, although hoping to get one for the basement as well. Mark has a really good exercise regimen and is quite committed to it. Maybe he can share more?

    Take care and feel free to write any time Timothy! Best wishes.
    Charlene.

  • #19113
     Mark Koziol 
    Keymaster

    Hello Tim, I am by far not an expert but I did follow closely what my pulmonary rehab team was saying to me. A lot of their system is on how your body uses metabolic equivalent for task (METS). I provided a link. When I was done with phase II pulmonary rehab I began phase III pulmonary rehab which is done by myself. I do several days a week at their facility and several at my local gym. For cardio, I walk, ride bike, take my dog for a walk, do the eliptical, and the stairmaster. I try to improve each day but sometimes it may not be that easy. There are other factors; rough night sleeping, I may have worked my legs extremely hard, just feeling not myself. These are taken into account when I work out. I also do free weights, weight machines, and also resistance exercises. I do all parts of the body. Pre transplant I had to do everything sitting down because my sats would go below 88% very quickly. Try to get into a pulmonary rehab program or do one online they will have the answers you are searching for. Keep in touch, Mark.

    • This reply was modified 1 month, 2 weeks ago by  Mark Koziol.
  • #19131
     Timothy Black 
    Participant

    Hey Mark.

    E Gad. I have one foot in each camp so to speak. I had a TBI almost five years ago. From able to laid up it effects everything. In my confusion I have labeled much of lack of strength to my IPF. It dawned on me yesterday that my entire battle is up hill. 30k on my bicycle was six years ago.

    Thanks

    Tim

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