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GratefulDeb

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@gratefuldeb

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    GratefulDeb replied to the topic Starting Ofev in the forum Ofev (Nintedanib) 3 weeks, 1 day ago

    That’s great news!!!

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    GratefulDeb replied to the topic Weight Management is Hard with IPF in the forum Living with Pulmonary Fibrosis: 50+ 3 weeks, 1 day ago

    I hear you!!! I have gained at least 55 lbs over the past 3 years.  It sucks, I know.  I try to get some exercise but I run out of breath quickly and I am on oxygen 24/7.  I attribute it to Prednisone….which I am now tapering off as I am about to start OFEV (nervous about that).  Prednisone really bloats me up and my appetite is huge on Pre…[Read more]

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    GratefulDeb replied to the topic Cost of Ofev in the forum Ofev (Nintedanib) 1 month, 1 week ago

    Thanks Doc. I do not have the “good” Medicare Part D plan.  I reached out to the drug manufacturer and am going through the process of trying to get their financial assistance and I do believe I qualify…..at least from the telephone call I had with them I am now hopeful.

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    GratefulDeb replied to the topic The inevitable…. in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 1 week ago

    Thanks everyone.  Been a long day for me and I’m not in a good headspace to write at the moment.  I will post something tomorrow as I really need to purge some thoughts.

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    GratefulDeb started the topic The inevitable…. in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 1 week ago

    I don’t know if it is “safe” to discuss end of life here or not but I need to speak about it with other sufferers of PF and it’s been weighing heavily on my mind.  Is it okay?  I don’t want to start typing without permission.

    GratefulDeb

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    GratefulDeb replied to the topic Cost of Ofev in the forum Ofev (Nintedanib) 1 month, 1 week ago

    Thank you to EVERYONE for your kind replies.

  • Profile picture of GratefulDeb

    GratefulDeb replied to the topic Oxygen Delivery System when needs go up in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 month, 1 week ago

    I am sorry you are going through this.  I would give Hospice a call just to see what their thoughts are on the subject.   I understand your fear in calling them but from your post it sounds to me like your Mom is already aware of the inevitable ….“she has been told that there was nothing that could be done, so since that time, she has refused fu…[Read more]

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    GratefulDeb replied to the topic Side effects of exposure to the sun in the forum Esbriet (Pirfenidone) 1 month, 1 week ago

    Oh no.  I live on an island and looking into starting Ofev.  I am always outside.  I hope Ofev doesn’t have the same side effect as the Esbriet.

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    GratefulDeb replied to the topic Lung Biopsy in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 1 week ago

    That’s exactly my fear, Chris. I read somewhere that there is a slight risk of biopsy triggering exacerbation

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    GratefulDeb started the topic Lung Biopsy in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 2 weeks ago

    I have been symptomatic since 2008.  Yes!  You read that right.  I’ve recently received the dreaded PF diagnose and am on oxygen 24/7.  My lungs are severely scarred and fibrotic.  My other organs are now been effected by the PF.  My heart is enlarged, I have a mass on my liver and my kidneys are having issues.  A transplant surgeon wants to do…[Read more]

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    GratefulDeb replied to the topic Cost of Ofev in the forum Ofev (Nintedanib) 1 month, 2 weeks ago

    WOW!  Thank you to all of you!  My pulmonologist is looking into B-I.  I truly appreciate he time each of you took to answer my question.

     

    GratefulDeb

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    GratefulDeb posted a new activity comment 1 month, 2 weeks ago

    Thanks, Kevin – appreciate it.
    deb

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    GratefulDeb replied to the topic The Importance of Patient-Centered Care in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 month, 2 weeks ago

    Oh God.  I could not have said it any better than Tonya Worley said.  All of it resonates with me.  Tonya, you took the words right out of my mouth.  Asking for something for pain has become something of shame.  I asked for something for my pain and was met with a big NO.  This disease IS painful.  Unless you have directly experienced it, you ca…[Read more]

  • Profile picture of GratefulDeb

    GratefulDeb started the topic Cost of Ofev in the forum Ofev (Nintedanib) 1 month, 2 weeks ago

    Hello everyone.  I hope this finds you feeling well today and most importantly, happy.  I have PF and have been symptomatic since 2008.  Yes, 2008.  I’ve been seen by pulmonologists all over….Cleveland Clinic, Temple Lung Institute, Johns Hopkins and now UMiami Health.   I am scheduled for a biopsy next week.  Because my lungs are so fibro…[Read more]

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    GratefulDeb posted an update 1 month, 2 weeks ago

    Where are my posts?

    • Profile picture of Kevin Schaefer
      Kevin Schaefer replied 1 month, 2 weeks ago

      Hi Deb, sorry WordPress flagged them, but they’re approved now.

      • Profile picture of GratefulDeb
        GratefulDeb replied 1 month, 2 weeks ago

        Thanks, Kevin – appreciate it.
        deb

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    GratefulDeb replied to the topic What You Enjoy… in the forum Hobbies & Projects 1 month, 3 weeks ago

    I live in the U.S. Virgin Islands so I enjoy the beach, the rainforest and the beautiful people here.  I enjoy living on an island hilltop that overlooks the Caribbean Ocean.  I wish I could get our more but due to my PF and being on oxygen 24/7 limits my life.  I enjoy making people laugh.  I enjoy music and writing.  I enjoy being with my litt…[Read more]

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    GratefulDeb changed their profile picture 1 month, 3 weeks ago

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    GratefulDeb replied to the topic 30 Days of PF: Choosing Not to Get 'On the List' in the forum 30 Days of PF 1 month, 3 weeks ago

    I also chose not to “get on the list”.  I am not frightened of dying.  I am at peace with the idea and I am working towards making the rest of it the best I can.  I’ve lived with this since 2008 and it has progressed over the years.  I’ve lived a fantastic life and I am ready for more.

    Namaste,
    GratefulDeb

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    GratefulDeb became a registered member 1 month, 3 weeks ago

    • Profile picture of Christie Patient
      Christie Patient replied 1 month, 2 weeks ago

      Welcome to the PF forums Deb, we’re glad you found us.

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