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    • #12616

      The Pulmonary Fibrosis Foundation (PFF) has added 15 treatment sites to its nationwide Care Center Network (CCN) — centers with recognized expertise in diagnosing and treating pulmonary fibrosis patients.

      Read more about this initiative in: Pulmonary Fibrosis Foundation Adds 15 Treatment Sites to Its Care Center Network 

      Do you live close to a pulmonary fibrosis treatment center or do you have to travel for medical care?

    • #12647
      Terri Little
      Participant

      My pulmonary dr is currently trying to get me into a trial program at Washington University in St. Louis Mo. I’m surprised they are not listed or that he (my dr) did not direct me to the one in Chesterfield Mo, which is just as close as the other.  I’m thankful for the list – I’m assuming the treatment sites listed are up to speed on the best medications/treatments available for PF (IPF) patients.

      • #12652

        Hi Terri,

        Thanks for letting us know this, and contributing to this topic thread. If you’re comfortable, do you mind sharing more information about the trial program at WU? Is it a medication-based trial program, ie. with Esbriet or OFEV or is it rehabilitation or exercise-based? Just truly curious, and wonder if others might benefit from knowing more about this as well. I’m not sure why it isn’t on the list that was posted here, is it a relatively new trial and perhaps wasn’t initiated when the list was generated? Not sure but definitely good information!

        Thanks in advance for sharing.
        Charlene.

    • #12677
      Terri Little
      Participant

      Hi Charlene,

      I don’t know anything yet about the trial. My dr sent my history off for them to look at and I’m waiting to be accepted.  I’m sorry I wasn’t clear on that.  I really don’t know what to expect right now, but when I find out, I’ll respond back on this thread.

       

      Thank you,

      Terri

      • #12680

        Hi Terri,

        Thanks for getting back to me and answering all my questions. Understandable, that information isn’t necessarily given to you about the trial until you’re accepted into it… I guess that does make sense, doesn’t it? Do you know if it will be awhile before they accept you into the trial, or if they will need to take time to consider your health history then make a decision?

        Hope the waiting isn’t too difficult for you, I know sometimes waiting for health-related treatments, trials or results can be taxing. Thinking of you!

        Charlene.

    • #12742
      Delores Overby
      Participant

      Cherlene thank you for sharing such valuable information for those of us with Pulmonary fibrosis. I look forward to reading your weekly blogs. Thank you again.

      • #12752

        Thank you for such kind words Delores! I am always so glad to hear that the information posted to these forums is helpful, and/or that my columns are of interest to readers. I so appreciate the feedback and truly cherish all the comments that come in from these platforms. It’s so nice to be apart of this community, although I wish none of us were plagued with this disease. Since we are, I’m glad to have this opportunity to connect with others.

        Take good care and please feel free to reach out any time.

        Kind regards,
        Charlene.

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