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  • The Trauma of Remembering Past IPF Events

    Posted by Charlene Marshall on May 3, 2018 at 8:35 am


    Hello Wonderful Forum Members,

    This is a bit of a tough question for me to ask or post to make. However, I thought a lot about it today and I think many of you will be able to understand my struggle with something a lot more than my friends, colleagues or family members will. That being said, I am sorry if you can relate to my experience or question(s) below, because this means that you have had a life-threatening episode as well.

    One year ago today, May 2nd 2017 was pretty scary for me and those who love me. I had my first real exacerbation event where both of my lungs collapsed due to fluid and strenuous breathing and I was left intubated in the ICU. My intubation actually happened en route to the hospital and was done incorrectly at first, which meant I was left struggling to breathe with a tube halfway in my throat. I was sedated from exhaustion, anxiety and fighting the breathing tube and when I woke up, I had IV lines everywhere. Thankfully, with proper intervention, my medical team was able to get ahead of what was happening to me and I recovered relatively quickly.

    I still have some lingering effects of this day, such as nerve and tissue damage in my left foot from an IV that came out unnoticed, where medication leaked into my skin as opposed to my vein. The biggest effect that has remained though, one year later, is the emotional scars and trauma of this day. Fast forward to today, a full 365 days later and I can’t help but re-live everything that happened on this day in 2017. I am re-visiting the day in my mind, and thinking about what some of my colleagues went through that day when they rushed down to visit me but weren’t allowed in due to ICU restrictions. I think about the recovery time that it took, and having to use a walker at first, and having had a feeding tube placed because I wasn’t interested in eating orally. When I think back to this day a year ago, my eyes well up with tears and I don’t know what those tears are from. Perhaps it is gratitude? Despite this being a life-threatening event, I am grateful that my story was not cut short that day. Perhaps some of the tears are out of fear: based on this experience, I now have the knowledge of how serious my disease can be, and how quickly that can happen.

    To other IPF patients in our forum community: do you have any events that trigger certain emotions for you on the anniversaries of when they happened? 

    For some, this might be your diagnosis date and for others, it might be the day you started using supplemental oxygen. It is my hope that not many of you will have had a simliar experience that I had. However, if you did: how do you deal with the emotional trauma of such an event?

    I have sought out professional help for this, seeing as this is the field I work in, I know how important it is. Due to that, I am better able to cope with this on a daily basis and rarely think about it. However, I think it is normal to feel these emotions on the significant anniversaries, such as one year later.

    Thank you for letting me vent, and in advance for any of your comments and contributions!

    Warm regards,

    replied 6 years, 2 months ago 1 Member · 0 Replies
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