This topic contains 6 replies, has 4 voices, and was last updated by  Charlene Marshall 4 weeks, 1 day ago.

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  • #21258
     Charlene Marshall 
    Keymaster

    In anticipation of a big trip coming up, I had a meeting with my pulmonology and cardiology teams at my local transplant centre to review what I needed to do overseas to ensure I was safe. After being diagnosed with idiopathic pulmonary fibrosis (IPF), a chronic and life-threatening lung disease; I believe in being proactive about traveling because I never really know when a medical emergency might creep up. Click HERE to read a previous column of mine about three professionals you should speak with prior to travelling with any chronic health condition, such as IPF.

    While I am happy to report that I can still go on my trip – we did review a number of precautions I have to take to ensure my health and well-being on the trip. With cold and flu season right around the corner, it is important that I take the steps to protect my lungs, especially in contained spaces such as the aircraft. About halfway through the discussion, I began feeling fatigued and experienced a bit of what-I-call “information overload”.

    In hindsight, I realized that I probably should have brought someone with me to this appointment so I had a second set of ears to comprehend the information if I became too tired. This isn’t something I practice regularly – bringing someone with me to appointments – but I probably should.

    I am curious: do other members of the forum living with IPF/PF bring someone with them to appointments, to act as a “second set of ears”? 

    Appointments can be filled with lots of information, sometimes difficult to digest. If you have any other tips to share about how you retain and remember all the information at important appointments, please share with us!

  • #21272
     Rose Sottilo 
    Participant

    I always have either hubby or SIL with me for all pulmonologist and cardiologist appointments. They are there to take notes and ask for answers to questions I have writen down in the weeks prior to the appointments. It helps a lot, I tend to forget about the details, but they have it all down on paper.

    • #21294
       Charlene Marshall 
      Keymaster

      Hi Rose,

      Thanks for writing and sharing your experience on this topic! Really glad you have people who can readily accompany you to appointments, and write things down for you. I bet that helps a lot as I often feel like I am in “information overload” and am even sometimes too tired to try and write it all down! Thanks for writing!
      Charlene.

  • #21281
     Carmela Vasta 
    Participant

    hi Charlene,

    Usually my sister goes with me to help manage the tanks…but if I am discussing something important regarding the health issues, she does come in to the office with me
    to be that second pair of ears–prompts another thought for those of us who go to the appt alone–what about recording? traditional style [w/permission] or a smartphone app-just a thought—

    Have a great time!!! Enjoy, rest, take precautions, etc…do whatever you have to to make this trip forever memorable! Many hugs, Carmela

  • #21293
     Charlene Marshall 
    Keymaster

    Hi Carmela,

    Thanks for writing and sharing your experience of bringing someone with you to appointments. I think your approach is best – bringing someone along, whether it be to help with equipment (such as oxygen tanks) or be a second set of ears for all the information that is shared. Recording appointments (with permission, as you say) is a good idea, especially to reflect back on or reiterate what was said if we forget. Really good idea – I’m sure many folks will benefit from your suggestion. Thanks for writing!
    Charlene.

  • #21312
     Nan 
    Participant

    When i was going through breast cancer, the team advised me to bring someone to appointments so i always did, hubby, son or friend. When my husband comes with me to GP appointments they have been shocked and asked why he was there lol. It was awkward, don’t want it to look like he is a control freak hahaha. Sometimes i prefer to be alone sometimes not. My siblings and I always try to go with my mom to appointments, she doesn’t really like it but understands why we feel it is important. It is amazing to come out of an appoint and find that you each took something different away from it.

  • #21318
     Charlene Marshall 
    Keymaster

    Thanks for sharing your thoughts on this topic Nan, and the benefits of bringing someone else along to our appointments. I’ve never thought of reviewing what someone else takes away from the appointment to compare what I took away, great idea! It also helps with the mental fatigue that doctors appointments always bring me, to have someone else there to help discuss ideas or topics. It is also nice to have someone to share the drive with! Thanks for writing and I hope you’re doing well.
    Charlene.

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