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    • #18097
      nickhoor
      Participant

      Hello Steve! ( @steve-dragoo )

      I almost jealus about the O2%….Ofcourse I wish the best for you!

      Please tell me,when you first diagnosed?How old are you?

      I’m sure you don’t believe about internet bullshits(3-5 years life expectancy after diagnose)

      You know about your FVC in your spirometry?

      Sorry to ask…I always like to know more & more info about IPF,you understand me

    • #17976
      nickhoor
      Participant

      hello my friend Steve!

      very nice to hear about your o2….

      your o2 is in 95% or 98% without help?(tanks)

      if yes…perfect!very nice!if no…sorry,I misunderstand…

      if yes…activity helps so much?

    • #12598
      nickhoor
      Participant

      Hi Charlene,

      Its good to talk with you and others like me…..fighting with ipf

      maybe its like a ‘gift’ to us…..we can see clear life….and living it better!

      Yes about pulmonary hypertension….but I think you know….human organism is

      very strong….even if your heart goes to 125/min you will sit 5-10 minutes and ok maybe…

      thats for the O2 too,after walking to long it goes 75% you sit 5-10 min breathing as deep

      as you can and….oops 92% again!I say this for me,not for everyone ofcourse….the very bad

      think is when the O2 stay down and need homes O2 or hospital from cold maybe….

      I must say that the good weather of Greece helps a lot maybe….Sorry for the

      lot of maybes but I’m not a doctor

      Warm regards,

      Nick

       

    • #12580
      nickhoor
      Participant

      Hello from Greece…..Hellas better!

      I was diagnosed in 2015 started esbriet on start of 2016

      all that matters with PR is…..good/deep breathing and keep open

      your chest with opening wide your hands.the perfect move for my O2

      go 97-8% for moments…then back to 90%-by my oximeter-

      But keep in your mind that not all ipf are the same

      I’m 43 yo and genetic ipf….

      I’m not sitting all day at home,but for my heart going out not far…

      I have the oximeter that helps

      • This reply was modified 2 years, 5 months ago by nickhoor.
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