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    • #25336
      John Weitner
      Participant

      Hi all,

       

      I’m a new member having been diagnosed with IPF a few weeks ago. Prior to this, I was pretty inactive. I’m 67 and have been retired for 10 years.  Since the diagnosis, I have changed my diet – lost 10 pounds with 30 more to go.

      I have been exercising every day. My routine consists of 30 minutes of breathing exercises and stretching exercises. I can already feel the benefits of the stretching.

      I then do 30 minutes on a treadmill/climber at a fairly slow pace and using oxygen. I stop every 5 minutes to check my oxygen level. The lowest it has been is 77. I rest until it hits 90 then start the next 5 minutes. Any tips or suggestions about the cardio routine?

      Thanks

      John

       

    • #25337

      Hi John,

      Way to go for implementing a new exercise routine – I know that is not easy while living with this disease, but very important for all of us, so kudos to you! I really benefit from regular stretching as well. Does your treatment facility or anywhere locally offer a pulmonary rehab program? This has been really helpful for teaching me exercise(s) that work for someone with IPF/PF. If you can attend a program like that, I’d highly recommend.

       

      In the meantime, I don’t know any cardio exercises I can recommend as I’m not qualified to do so but wondering if you can, @noah-greenspan? Check out his website for more information on pulmonary rehab/exercises for patients with lung diseases: https://pulmonarywellness.org/bootcamp/

       

      Sincerely,
      Charlene.

    • #25341
      John Weitner
      Participant

      Hi Charlene..

      thanks for the suggestion about a lung rehab program – there is a place not to far away that does offer personalized exercise programs – I will contact them.

      This is the video I use for breathing and stretching – it was put together by the Irish Lung Fibrosis Association..

      John

    • #25344

      Hi John,

      Thanks so much for sharing this – I’ll check it out for sure!
      Kind regards,
      Char.

    • #25360
      Marsha
      Participant

      John,

      Thank you so very much for this excellent and useful video! This is exactly what I need right now and moving forward. You are fortunate to have found such a good resource so quickly. I also utilize the pulmonary wellness/boot camp by Noah Greenspan as Charlene suggested. Also a great resource. My pulmonary function class shut down due to the COVID pandemic so it’s great to have classes and lectures available virtually. Good luck and thanks again for sharing!

      Marsha

    • #25359
      Lesley
      Participant

      This is really good.especially the controlled breathing exercises. I have no access to Pulmonary Rehab in my part of NZ, so will add these to my regular Aquarist classes. Anything I can do to keep as fit as I can with this wretched disease.  Thank you for sharing 😊

    • #25398

      Great to hear that Lesley! I am also so pleased John shared this 🙂
      Char.

    • #25399
      Mary Ward
      Participant

      Where would i find exercise plan ?

    • #25414

      @mary-ward

      Hi Mary,

      Thanks so much for writing! There are various ways to obtain information about exercise, though, my top recommendation is to ask your physician for a referral to a pulmonary rehab program that can first assess your exercise abilities. If this isn’t an option, do some research on credible pulmonary rehab programs, either at a hospital, center or online. One of the ones many members find extremely helpful is Dr. Greenspan’s online bootcamp which can be found here: https://pulmonarywellness.org/bootcamp/

       

      Hopefully this is helpful 🙂
      Charlene.

    • #25439
      Suzanne R Brennan
      Participant

      John, if you are dropping to 77, you really need to stop exercising until you have supplemental oxygen to use to do it safely. It’s way too hard on your heart and other internal organs to go that low and stopping to “let your O2 catch up” is not good enough.

      Please contact your pulmonologist and let him/her know that this is happening so they can prescribe supplemental O2 for you.

    • #25444
      John Weitner
      Participant

      Hi Suzanne

      I do have supplemental O2 which I use while on the treadmill.. I have it set to output 3L/min and I still will drop to 77.. should I increase the flow rate ? or should I slow the treadmill speed down so the O2 level stays higher?

    • #25445
      Susan Howitt
      Participant

      Hi John

      You sound like me, doesn’t matter how little I do I drop to very low 70’s or even into the 60’s even with my POC set on its highest, number 5. I have to stop and wait for my levels to go up to 91 before I can start off again for another couple of hundred meters  Not sure if an increase in flow will work for me.  Received my appointment with the doc that first put me on O2, 17th November !!! hoping to get a portable machine that will give a higher flow.

    • #25446
      John Weitner
      Participant

      My POC goes up to 15! and the O2 is gushing out. I’ll up the flow rate when exercising and see if I can raise my O2 level.

    • #25447
      Dawn
      Participant

      Hi John,

      My only suggestion would be to add a weight routine to your work out. I just finished my pulmonary therapy program at the hospital (medicare paid for 36 sessions) and they had me do 6 minutes of hand weights starting with 3# and building up to 4#. At home I’m up to 5# and do about 15 minutes at a time. I was told to condition my heart, lungs, and muscles to maximize oxygen efficiency.

      Interesting, I’m 67 also and was just diagnosed along with my older brother. I lost another brother two years ago with it…he was 67.  Three siblings and all of us have pf. Still trying to wrap my head around it.

      Oh, also drink lots of water!

      Gods best to you,

      Dawn

       

    • #25450
      Susan Howitt
      Participant

      What sort of POC have you got John that goes to 15 !!!  Mine is a back pack Respironics Simply Go and only goes to 5 not enough for me now.

    • #25456
      John Weitner
      Participant

      Hi Susan..

      I use this one:

      CAIRE® Hi Flow Stroller®
      CAIRE’s Hi Flow Stroller offers continuous flow up to 15 LPM and is the perfect option for hospitals, long-term care facilities and ambulating oxygen users that require high flow rates. The CAIRE Hi Flow Stroller is housed in an attractive leather-finish soft case that is both attractive, durable, and easy to clean. It features a digital contents indicator with LED lights that are easy to read with the touch of a single button.

    • #25457
      John Weitner
      Participant

      Hi @dawn ,

      Yes I do use some weights for the arms as well as strengthening my legs in the Yoga exercises.. So sorry to hear about your family..this sure suggests PF is hereditary.

    • #25460
      Susan Howitt
      Participant

      Thanks for the info John

       

      Looked it up, there is no way I would be able to have that out here because of supplies if they were even available, live out in the sticks and often blocked in in the winter too.  Sounds ideal though.

       

      A bientôt  Sue

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