This topic has 2 replies, 3 voices, and was last updated 6 months, 4 weeks ago by Mark Koziol.

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    • #11253

      Hi Everyone,

      I recently wrote this discussion topic in the Living with Pulmonary Fibrosis: 40 & Under forum, however, it dawned on me that all of us, regardless of age have to face this topic. As a result, I decided to share here as well.

      It is a hard topic to write about, as it isn’t something I often want to talk to others about (especially those outside of my PF circle), but it isn’t ever far from my mind. Throughout my journey with IPF, I have met some of the most amazing people who are facing the same, or a very similar disease as I am and instantly a connection forms that is like no other. It feels incredibly comforting to get to know someone who truly understands what you’re going through, the fears you face and the frustration you feel about living with an illness that can be debilitating. For me, many of these people have been found through online or in-person support groups, or through advocacy initiatives in hopes of raising awareness about lung diseases. While this meeting new people who are amazing, supportive and kind has been one of the best gifts of living with IPF; it has also been one of the worst gifts. This is because I have had several friends and confidants pass away from their disease, and each time it instills a great fear in me about “what if I am next”? Unfortunately, IPF can rapidly decline due to an unsuspecting event so the reality that it could ‘all come crashing down quickly’ is never far from my mind.

      Most often I don’t show this side of me to others and I try to remain strong and positive, but I can’t help but fear this when I see these equally strong and positive patients die from their disease. Each time it hurts a little more, even though I have come to sort of expect this to happen…. as terrible as that sounds, it is reality.

      For those of you living with PF and, if you have experienced the loss of someone you love who is similar in age to you, I’d like to ask you:

      • How do you cope with the loss?
      • What are some things you do to help get you through the tough time of losing a friend and supporter?
      • Are you overwhelmed by the fear and/or thoughts of ‘what if this happens to me’? If so, how do you subdue those fears?
      • Do you have anything you do to honour their memory?

      I do have a ritual that I do after someone I care about has passed, which helps me gain some closure.  I’d be happy to share it if anyone was interested? Please let me know and thanks in advance for your contributions on this very difficult, but important topic.



    • #19249
       linda waldschmidt

      How do you deal with the thought of dying. Are you afraid of suffering or do they give comfort care until you pass. Are you going to get a lung transplant?


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