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    • #19798

      In a recent column I wrote titled Pulmonary Fibrosis Patients Live in a Constant State of Fear, I vaguely mentioned a friend of mine who was found unresponsive after receiving a successful double lung transplant nearly a month prior. While he is doing well now, I can only imagine the fear his Mom felt when finding him on the floor. This had a huge impact on me, and left me pondering how I might help prevent something like this in the various environments I am regularly a part of, such as my workplace.

      I spoke to our Human Resources manager about my fears, and highlighted that oftentimes, patients have 60 seconds to start receiving oxygen if their lungs stop functioning before permanent brain and organ damage set in. Needless to say, that scared her and highlighted how serious this disease can be. As a result, we have put some steps in place to widely educate our agency on what I need during a respiratory episode, distress or IPF-related flare up with my lungs.

      The first step she asked for was for me to write my own emergency respiratory protocol. I had no idea where to start here, so I did some research on safety protocols using a simple Google search. What was consistent in all of the templates was to include the following: pre-warning signs of a respiratory distress, medication administration/monitoring during an episode and post-event steps. They also advised people to include contact information of the local hospital, ie. Charlene Marshall should be transported to X hospital via EMS and outline when an ambulance should be called vs. when one isn’t needed. Especially with respiratory episodes, people often jump to the assumption that 911 needs to be called, however, honouring a patient’s competence I asked that if I am lucid, I decide whether an ambulance is called or not.

      The next step was to “train” my staff team on basic oxygen administration and inform everyone where my 02, ambu-bag and inhalers are kept around the office in the event of an emergency. We hand selected a few people who are closest to me in proximity, or are on my small team to train first. Then we thought due to the level of risk, we ought to train at least 90% of the staff on what my needs would be in the event of an emergency. The plan is to do this following an upcoming staff meeting, so the majority of my office teammates/colleagues will be trained on how to support me in an emergency.

      I have learnt a lot in this process, and while I understand honouring my knowledge and needs in the event of an emergency; I was surprised how much was left up to me to establish when it came to advocating for my health needs. I had to initiate having staff trained, write the emergency respiratory protocol, share it and then train everyone on staff.

      Have you ever had to put similar steps in place to ensure people know how to respond to you/your needs in the event of an emergency?

      What are your thoughts on writing your own emergency respiratory protocol? Would you be comfortable doing so? 

       

    • #21682
      JR German
      Participant

      Amazing!  As a recent diagnosee I am still learning about PF and the impacts it has on routine life activities.  Emergency support never crossed my mind.  I do wear dog tags that are connected to RoadID, which allows me to enter a detailed medical record for first responders.  I purchased it a few years ago when I was still riding my bicycle to work.  It would not work in a sudden health crisis where those around you must respond but it does give me an amount of assurance otherwise.

      • This reply was modified 1 year, 11 months ago by JR German.
      • #21692
        Mark Koziol
        Participant

        Hello JR German, thank you for input. I have my information on an app on my phone. I imagine some emergency medical personnel would look on a persons phone and hopefully find information pertinent to the situation.

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