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Joan ciccarelli

Home Members Joan ciccarelli
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@ciookie

@nimrod hi i am new to this i have had ipf since 2006 i am on oxygen 4 when i walk and i have liquid oxygen and straight oxygen This forum is very interesting wish i had it when i first started with iof View
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  • Profile picture of Joan ciccarelli

    Joan ciccarelli replied to the topic Extreme Fatigue in the forum Living with Pulmonary Fibrosis: 50+ 1 year, 3 months ago

    Hi
    I have had ipf for a long time i am getting
    Problems with what i call attacks of real bad
    Out of breath doing almost nothing the only thing I can say is get into bed or find what you call your safe place and try very hard to relax i know how hard itbis i am even on oxygen i feel i have a very good lung doctor but with this virus hevonly…[Read more]

  • Profile picture of Joan ciccarelli

    Joan ciccarelli replied to the topic Possible Cause of IPF – Ammonia ingestion and Statin?? Progressive? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 3 months ago

    Hi I have if have had it for years no one actually knows what caused this awful disease

  • Profile picture of Joan ciccarelli

    Joan ciccarelli replied to the topic Laser and ipf in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 years, 1 month ago

    I have asked my doctor re lazzer and he has not got back to me yet  I am on oxygen liquid a d air 24 7 take prednisone which bells quite a bit also have a puffer and have morphine if I need it my doctor is usually pretty good but due to the virus he only phones me in Canada lazzer may be hard to fi d

  • Profile picture of Joan ciccarelli

    Joan ciccarelli posted a new activity comment 2 years, 5 months ago

    Hi karen
    We are lucky to still be alive as this disease takes some people real early my doctor is really not up to the lazzer i will be talking g to him on monday no office visits with this virus but he was the one who realized what i had one doctor tried puffers and said i do not know what this is goodbye . I was shocked but luckily i found dr…[Read more]

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    • Profile picture of Karen Boettin.
      Karen Boettin. replied 2 years, 5 months ago

      I have great Dr’s I go to northwestern downtown Chicago.Where are you at?

  • Profile picture of Joan ciccarelli

    Joan ciccarelli posted an update 2 years, 6 months ago

    @nimrod hi i am new to this i have had ipf since 2006 i am on oxygen 4 when i walk and i have liquid oxygen and straight oxygen
    This forum is very interesting wish i had it when i first started with iof

    • Profile picture of Karen Boettin.
      Karen Boettin. replied 2 years, 5 months ago

      I’ve had it for about 20 years, it started with Raynauds .I’m on 2 liters .i.e. Taking ofev now to slow down the fibrosis in my lungs.

      • Profile picture of Joan ciccarelli
        Joan ciccarelli replied 2 years, 5 months ago

        Hi karen
        We are lucky to still be alive as this disease takes some people real early my doctor is really not up to the lazzer i will be talking g to him on monday no office visits with this virus but he was the one who realized what i had one doctor tried puffers and said i do not know what this is goodbye . I was shocked but luckily i found dr…[Read more]

        • Profile picture of Karen Boettin.
          Karen Boettin. replied 2 years, 5 months ago

          I have great Dr’s I go to northwestern downtown Chicago.Where are you at?

  • Profile picture of Joan ciccarelli

    Joan ciccarelli posted a new activity comment 2 years, 6 months ago

    Thank you

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    • Profile picture of Mark Koziol
      Mark Koziol replied 2 years, 6 months ago

      You are most welcome Joan!

  • Profile picture of Joan ciccarelli

    Joan ciccarelli became a registered member 2 years, 6 months ago

    • Profile picture of Mark Koziol
      Mark Koziol replied 2 years, 6 months ago

      Hello Joan, thank you for joining your pulmonary fibrosis forum. Welcome!

      • Profile picture of Joan ciccarelli
        Joan ciccarelli replied 2 years, 6 months ago

        Thank you

        • Profile picture of Mark Koziol
          Mark Koziol replied 2 years, 6 months ago

          You are most welcome Joan!

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