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    • #15643
      Marta Ribeiro
      Keymaster
      A hard truth about being diagnosed with a chronic illness is that there is usually a life expectancy to go with it. Often times, once a patient hears the diagnosis of their disease, there comes a desire to know ‘how long’ one can live with the disease and what the prognosis or outcome will eventually be. There are some diseases that have a more definite prognosis than others, and some whose life expectancy or how long someone can live with their disease is unclear. In the case of Idiopathic Pulmonary Fibrosis (IPF) that prognosis, according to the literature, is between three to five years without a lung transplant or other medical intervention. This is scary, and it often becomes the focus of a newly diagnosed patient. A helpful tip for patients to remember when considering or fearing their life expectancy following the diagnosis of their disease is: a prognosis is just a number.
      The process and thought of facing your own mortality are a hard one, and it takes a lot of emotional energy, courage, and guidance to be able to accept that your life isn’t going to be as long as you once thought it was.  
      How did you react when you got your diagnosis? How did you cope? Share your story below.
    • #15734
      Karl
      Participant

      What scared me surely scares a lot of people, specifically reading that I have 3 to 5 years to live. I think publishing that kind of information without acknowledging that some people have had IPF for 17 years and are still going is of questionable value. Of course it does get your attention, and perhaps that motivates you to try to do something about it.

      After I became more knowledgeable and the shock wore off, my attitude shifted to “Really? Not without a ruddy fight!”

      Attitude is everything.

      The certainty of death is the probably the only real fact of life. Wondering what will take my life is a forever question. With IPF I know the answer. So do other people with any incurable disease. I try not to dwell on IPF. If it doesn’t get me, something else will. And that something may be worse.

      I prefer to take the attitude that I’m lucky. There are others that are suffering from hunger, disease, injury, and an unlimited number of emotional problems that are worse off. I prefer to feel for them. That helps me cope with the knowledge that I have IPF.

      Hey, it simply is what it is. Live life to the fullest you can!

    • #15771

      I so appreciate your approach to coping with this disease Karl, thanks again for sharing your thoughts on this topic!

      When I read the 3-5 year prognosis/survival, I didn’t cope very well for a few weeks after that, understandably. This is especially true as I read it shortly after being diagnosed and of course, had not met anyone else living with IPF either in person or online. Now that I know how long some folks have lived with this disease I approach the “prognosis”/timeframe much differently. I wish there were stories out there of people who’ve lived a long time with this disease to counter that shocking prognosis information. This is one of my goals as a forum moderator/columnist with BioNews: to highlight the length of time someone can live well with IPF.

      Kudos to you for your approach to living with this disease – it is very admirable. You’re certainly right about the one thing that is certain in this life: we will all die from something. Live each day like its the last one, and just do your best, that is all we can do right?

      Happy holidays Karl.
      Charlene.

    • #15811
      gil
      Participant

      Charlene,

      I think you are right, prognosis is just a number, I’ll be going on 8 years since the doctor gave me the 3-5 number.

      Merry Christmas Charlene, I wish you the best.

      gil

       

       

       

      • #15823

        Hi Gil,

        It is so nice to hear from you!!! Your ears must have been ringing, as I was just thinking about you last week and wondering how you were doing! I was busy trying to catch up on the forums after being away for a week so I haven’t had a chance to email yet, but notice you wrote me so I’ll definitely catch up with you via direct email. So glad you’re going on year 8, even though I would imagine things are getting more difficult? Looking forward to catching up.

        Hope you had a wonderful Christmas with your family and wishing you all the best in 2019!
        Charlene.

    • #15814
      Karl
      Participant

      Hi Charlene, it occurs to me that my diagnosis started with the normal out of breath symptoms, a breathing function test, and a review of a CT scan of my lungs. But in addition to the lung CT scan, I had had a CT scan of my abdomen 8 years earlier for a kidney stone, The very lower part of my lungs showed up in that scan and guess what, the scaring that is prevalent now appeared but to a lesser extent 8 years earlier. So I’ve had IPF for 8 years before a formal diagnosis albeit without severe shortness of breath. Add that to your statistics of people who have lived longer than 3-5 years with this disease.

      I prefer to think of how lucky I am. There are many people far worse off than me with whatever their disease or situation. IPF simply is what it is.

      • #15824

        Hi Karl,

        Every time you write on this forum, I become even more appreciative of how you cope with your diagnosis. It is very admirable! I will definitely keep your story and Gil’s in mind when I am overwhelmed with the “3-5 year” statistic, as you both give me hope. Would you consider your shortness of breath now “severe”? I know you mentioned it wasn’t upon diagnosis, or 8 years ago when the scarring appeared in your scan.

        Wishing you continued wellness, and thanks for writing us. I will definitely remember your words when I get caught up in the worry of the prognosis of this illness…

        Cheers,
        Charlene.

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