Future health care needs

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Hello my name is Heather, and I am a respiratory therapy student. I am here to determine what PF patients and/or family member would like to see in their respiratory therapist. What is something that could be improved? What specific needs do you have that you feel need to be addressed? Any suggestions would be helpful! Thanks in advance for all your insight! 

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  • Posted

    Hi Heather:

    Could you tell us where you are located as I think it is important to know which medical jurisdiction we are commenting on.  U.S., U.K., Canada etc. as their approaches to IPF vary greatly.

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    • Posted

      Thanks Heather:

      I'm actually in Canada and I was diagnosed with IPF 6 years ago.  However, i'm not typical in that even after 6 years, I do not exhibit the normal symptoms associated with IPF.  I was actually diagnosed in Florida in 2012 as we Winter there.  I suffered a one time bout of shortness of breath.  The diagnosis was confirmed by a C-Scan and a Lung Function Test in Canada followed by an a scope of my lungs.  I was also tested for Asthma and it was ruled out.

      After a couple of years of no symptoms I questioned my respirologist more closely about my diagnosis and in particular what the lung scope showed.  He said the biopsy ruled out infection or other disease "so what we are left with is pulmonary fibrosis".  A really scientific diagnosis!!

      I had and still have annual Lung Function Tests.  These I find are by far the most informative treatments.  But if I can make only one recommendation it would be that a much better job needs to be done to standardize these tests between Labs, in particular the Predicted Norms against which the test results will be measured.  Let me give you an actual example from my own experience.  For the first couple of years my LFTs were carried out at my local hospital.  Using the Predicted Norms for the DLCO test these were consistent at around 16.3 from 2012 thru 2015.  In 2016 I had an LFT in April at a new lab my Specialist had set up as part of his practice.  The predicted DLCO norm was 24.1 with only a one year change in my age.  Obviously my lung performance against this norm declined significantly.  However, my ACTUAL DLCO results in all tests from 2012 thru 2013 were consistent and stable.  These 2 Labs are literally only 200 yards apart. Encourage your patients to learn as much about IPF as possible and in particular to learn how to interpret Lung Function Tests.  Lastly don't rush into advising patients to get onto the one of the new drugs on the market.  Where the Symptoms warrant doing so yes by all means, but if you find a patient like me who is symptom free despite the diagnosis, hold off.  My first Specialist wanted me to start medication and I think it was purely as a result of seeing the decline in my DLCO performance in April 2016, ignoring the significant change in the Predicted Norm (new Lab) over the previous year (old Lab).  I still take no medication except the health supplement NAC.  Hope you find this helpful and if you have any questions let me know.

       

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    • Posted

      Thanks so much for sharing you're story! If I have any questions I will definitely let you know. Thanks so much!

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  • Posted

    Hello Heather,

    I am living in Ireland and I find my specialist excellent. He meets me every three months after I have pulmonory tests and goes through the tests results with me. He put me on OFEV and  I also have liver blood tests in case of adverse reaction to my mrdication. I also have some lung exrays. Talking to others on this site some have not had any tsts and have little or no discussuion with their specialist.Even though I knpwI will get worse at some time I find having someone like my specialist to talk to and he gives me as much time as needed is very importantant and feel for those who are not getting the same treatment as I am getting. 

    Best wishes for your studies 

    John

     

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