This topic contains 4 replies, has 2 voices, and was last updated by  Charlene Marshall 1 year, 2 months ago.

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  • #13467
     Charlene Marshall 
    Keymaster

    It seems that following a diagnosis of a life-threatening lung disease, such as pulmonary fibrosis (PF), dramatic ups and downs just become part of daily living. At least, it has felt like this in my experience and it sure can be exhausting at times!

    Sometimes these ups and downs, or as I like to call them “highs” and “lows” can happen in chunks, ie. a week of good things and experiencing many “highs” or, they can happen alternating and some patients have a good day, then a bad day immediately following. Unfortunately, the latter seems to be my experience lately.

    As an example, I attended a concert a few weeks ago of a singer who has long been on both mine and my Mom’s bucketlist to see in person. It was a wonderful concert, and evening out with my Mom. I was glad I could go, even if I had my portable oxygen concentrator (POC) in tow and had to navigate walking up stands to our seats. The show was totally worth it! The next morning I drove back to work listening to the singer’s CD and was in such a good mood. It had been a long time since I’d attended a social event like this and as a result, I felt a boost in my energy and stamina for the rest of the week.

    Unfortunately that quickly came crashing down when the very next day I attended a medical appointment for my IPF that did not go well. The joy from the social venue the night before felt stolen from me, and opposite to the joyous ‘high’ I was experiencing, suddenly I was faced with an extreme low in under 24 hours. This exhausted me, and while reflecting, I realized it is actually something that is quite common while living with idiopathic pulmonary fibrosis (IPF).

    As a PF/IPF patient, do you experience these dramatic highs and lows in your own life?

    If so, can you share with us some examples? 

  • #13525
     Cooper P Abrams III 
    Participant

    The one thing that baffles me my oxygen levels.    Sleeping witoutw 02 it is 97-98.  Setting watching TV or writing (I am an author) it is 93-96.   Yet, I stand up walk to kitchen or try to go to the yard….boom … it goes to. 85-89 and I begin to haslte.   I normaly  feel good with activity, but when I try to do something it stops me.   Hey, I want to go fishing again.    I am learning to live with IPF…but doubt even as hard as I try it is in charge.   My faith in God is a comfort glad to know he is my Savior.  The end will be okay.

     

  • #13590
     Charlene Marshall 
    Keymaster

    So appreciate hearing your experience around this topic Cooper. Yes, my oxygen levels sometimes baffle me as well … they can shift so abruptly, even when I don’t feel the activity that I am doing is strenuous. Apparently to my body it is! Do you have a good portable oxygen concentrator (POC)? It would enable you to go fishing I would imagine, if someone can help you carry your supplies. I lug my POC everywhere and either someone helps me carry/wheel it or they help me with the things I am bringing with me – purse, dog, books, etc.

    Hope you can continue to live with IPF for a long time, and that you continue to do well.

    Kind regards,
    Charlene.

  • #13593
     Cooper P Abrams III 
    Participant

    I am always learning. I learned a all portable conconcentrators do not work with my CPAP. You need one the works on “conserve” and “continuous.” The ones advertised on TV are only conserve and will not work with CPAP. Other than that they are great. The will work on house current (AC) and a auto cigarette outlet on car (DC) plus on battery.
    My health provider is the VA (I am Vietnam vet) and they said I can get one from then soon. They are testing several POCs and will soon have them available.
    Hopes this helps.

    • #13596
       Charlene Marshall 
      Keymaster

      Hi Cooper,

      Thanks for your reply! Hope you’re having a nice Saturday…

      That is a bummer re: the POC not working with your CPAP. I have one that works on continuous flow upto 2LPM but doesn’t last long on battery using that setting, unless it is plugged in (either wall or into the car outlet). I am bringing it with me on vacation this fall, and had it with me on my trip to Australia and Vancouver. Greats news that your VA provider will get you a POC — so happy to hear this! 🙂

      Cheers,
      Charlene.

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