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  • ‘Scanxiety’ Among IPF Patients

    Posted by Charlene Marshall on April 17, 2021 at 12:27 pm

    Have you ever heard of the term ‘scanxiety’? While not an official dictionary definition, I use it to describe how I feel ahead of pulmonary clinics or medical appointments when I don’t know what to expect.

    There may be some differences in what each of us experiences during a medical appointment, but there are likely a lot of similarities too. I know many of us endure pulmonary function tests (PFTs) and the dreaded 6-minute-walk test. Others may have regular scans like X-rays or high-resolution CT scans, whereas some patients don’t get these regularly.

    Regardless of what your pulmonary clinic looks like, I would imagine many of you, like me, feel anxious about the results of those tests or scans. This is what I’ve coined the term: ‘Scanxiety’.

    I wrote more about ‘scanxiety’ HERE, along with some tips on how to manage it as an IPF patient.

     

    Do you experience ‘scanxiety’?

    If so, do you have any additional tips to share on how you manage it?

    Charlene Marshall replied 3 years, 2 months ago 4 Members · 5 Replies
  • 5 Replies
  • Sam Gilmore

    Member
    April 20, 2021 at 4:15 pm

    No not really My last appointments have been virtual. However I did go in for a CT scan but I could not do it I cant lay flat my head needs to be elevated and my arms over my head, and also lay on my stomach I cant do any of those things.  As they started to put me in the tube I said no cant do this pull me out.. So I did not get the CT so Im not sure what my DR wants me to try next. I have had IPF for 3 years and on 5 oxygen now I don’t think I have to much time left.  Don’t get around much spend time with my family and that keeps me going.  Sorry to get off track.

  • Marianne

    Member
    April 20, 2021 at 6:19 pm

    Sam –

    Would it be possible for your head to be elevated with a pillow to get a scan?  Can you lay on your back at all?  I very seldom sleep on my back.  I can not lay flat because of GERD and IPF.  When I go to the dentist I have to have my head elevated when they clean and examine my teeth.  I also cannot lay down flat to get a massage.  I must either be on my stomach or on back with my head elevated.  I have a cough that comes and go but trying to lay flat almost guarantees I will start coughing.  My pulmonary doctor does not have me do CT scans or chest xrays.   After I was diagnosed 2 years ago in May he told me no scans of any kind unless he ordered or approved them.  I told this information to my primary care.  Pretty sure pulmonary keeps tabs on my lungs with PFT and 6 minute walk tests.  I recently went on oxygen 2 lt upon exertion.

    Marianne

    P.S.  Note to Char – I really don’t like the PFT or 6 minute walk tests.  But they are scheduled every 6 months.

    • Charlene Marshall

      Member
      April 21, 2021 at 9:11 pm

      Hi @samgilmore

      I hope @marianne‘s suggestion might be of benefit to you?

      I am with you Marianne and hate my 6-minute-walk test and PFTs. Sometimes I feel anxious about running out of 02 when I complete them, and sometimes I am nervous about the test results…. sometimes both! Thanks for writing and providing this suggestion to Sam.
      Kind regards,
      Char.

  • Paul

    Member
    April 22, 2021 at 2:50 pm

    I am extremely claustrophobic, i need mediczfion before any scans.

  • Charlene Marshall

    Member
    April 22, 2021 at 8:09 pm

    Thanks for sharing that Paul. I would imagine that is more common than you think!
    Take care 🙂
    Char.

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