• Feeling desperate

    Posted by leahkana on August 17, 2022 at 8:39 am

    Last week I had a CT scan, was supposed to be made for a COPD and now they say I have scars in my lungs, they didnt gave me a diagnostic result, but they made it sound like I have this illnes, this is devastating for me, I had been trying to save my daughter’s life for the past 14 years and now my son have many emotional problems, and I dont need this now, is a chock, Im scare as hell, Im frustrated, and i feel trap in a grim future.

    jimlve replied 1 year, 6 months ago 5 Members · 10 Replies
  • 10 Replies
  • karen-martin

    Member
    August 18, 2022 at 3:50 pm

    Martha, I’m so sorry you are dealing with all of this at the same time and are so scared.  It is a scary diagnosis that I also have.  There are medications that can help to slow the progression of any scarring in the lungs and there are programs to help pay for them.  I hope you are seeing a pulmonologist that you like and trust.  Please go to him/her with your questions.  There is a lot of information on this website, but you really need to speak with your doctor as well.  I am 72 and have been living with this same diagnosis since late 2017.  It is possible to keep going and have a fairly “normal” life.

    I would also urge you to look for a support group, maybe online for questions about this, and a local one for help with your family issues.  No one can do everything alone and I hope you will reach out to others who can help, even if it is only to listen when life gets too complicated.  We all need friends.  Sending you love and prayers for  all of this.

  • steve-dragoo

    Member
    August 18, 2022 at 9:47 pm

    @leahkana

    Hi Martha,

    After 6 years into IPF with other compromising factors at age 73, I am still able to do a lot just slower and shorter.  Do all you can to stay even a tiny bit active throughout the day has helped the most.  We also have some promising trials in stages 2 to 3. Initially, when I was diagnosed I was in mental shock and did not want to tell anyone even my wife.

    But I know life is full of crucibles and I know where to go for peace – on my knees.

    Stay well,
    Steve

    • leahkana

      Member
      August 19, 2022 at 5:19 am

      Dear Karen, thanks for your kind words , Im trying to build a support for me, I feel terribly alone, scare and exhausted. God bless you.

      • leahkana

        Member
        August 19, 2022 at 5:26 am

        thanks Steve, your words give me hope, still  in shock and most of all in a profound sadness and pain . Im a very active person even that I suffer fibtomyalgia, trying my best . Blessings to you.

      • steve-dragoo

        Member
        August 19, 2022 at 6:54 pm

        @leahkana

        Martha,

         

        You will find a lot of helpful tips on these forums.  Many talk about different supplements and generally, I would recommend you first look at the various white papers regards supplements like EGCG, aspirin, and several more.  I take a big handful of different supplements daily that do help and I try to monitor them carefully especially since I give my wife some too.

        I know this may not help much but being aware there are typically 6 stages to grieving can be a blessing.

        Stay well…
        Steve

  • jim-nox

    Member
    August 18, 2022 at 10:36 pm

    Hi Martha,

    Sorry to hear of your tentative diagnosis. FYI I am an 85Y/O male, diagnosed with IPF/PH in 2015. During the intervening years I have experienced a gradual decline and am presently on O2 24/7 at 9l. I have investigated the journal articles on the FDA approved drugs OFEV & Esbrit, and made the personal judgement that, for me, their cost is not worth the very modest benefit they have shown in all trials.

    However, here is some good news. My GP is Asian (Vietnam) and has a phd in nuclear physics as well as an MD and Board Certified Internist. He has repeatedly recommended a set of simple Chinese based breathing exercises. His demonstration of the exercises looked so basic as to be unscientific. THEN about a year ago on this Pulmonary Fibrosis News website, I saw an article referencing a Shanghai double blind & peer reviewed study of these very exercises published in a credible medical journal. The results of the study indicated that the benefits of these free, easy, and ancient Chinese exercises provide very similar benefits as the outrageously expensive drugs ($10 to 15 thousand USD per month) approved by the US FDA. These exercises are simple and free. Wish I had listened to my GP the first time and started them then. At my advanced disease stage they are difficult to perform. But you are at the beginning of your tentative diagnosis, they should be helpful to either COPD or IPF/PH. Suggest you look up that study on this website and show it to your own doctor for his advice.

    Maybe some of our fellow patients in this forum can remember the study and article and give you a more direct reference.

    All my best wishes to you for a good outcome and a successful battle with this rare disease.

    Jim Knox, Central Texas

  • jimlve

    Member
    August 19, 2022 at 8:09 pm

    I have been trying to reply but have had some difficulty and before I lose another comment, I am testing my system.

  • steve-dragoo

    Member
    August 19, 2022 at 9:48 pm
  • jimlve

    Member
    August 19, 2022 at 10:07 pm

    00

  • jimlve

    Member
    August 19, 2022 at 10:10 pm

    12

     

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