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    • #29231
      Sylvio tabet
      Participant

      Most side and doctors give you 3to 5 years to live after diagnostic . they do not give any statistics. I believe that you can live much longer. Is is true that If  I live at any altitude over sea level I am shortening my life , expect if I am consistently in oxygen ( not very practical )

    • #29236
      Pete Besio
      Participant

      Sylvio,
      I don’t have any input regarding the effects of altitude on life expectancy of IPF patients.

      I do have input on the “3 to 5 year” life expectancy however. The 3 to 5 year expectancy data is very dated. My IPF diagnosis was provided to me by my pulmonologist, and confirmed by 2 additional pulmonologist. All 3 of these doctors informed me that current medications (OFEV and Esbriet) and current treatment regimens generally provide a significantly longer life expectancy. With that being said, IPF effects each of us differently, including our life expectancy.
      Best Regards,
      Pete Besio

    • #29235
      Jerry Genesio
      Participant

      Yes, Sylvio, I have read those diagnosed with IPF have 3 to 5 years as well. But my mother was diagnosed at 80 and lived to be 90. I was diagnosed at 81 so I plan to live to at least 91. I’ll let you know. 😉

    • #29238
      Jerry
      Participant

      Good luck to you.  Why stop at 91 ?

       

      • #29240
        Jerry Genesio
        Participant

        Thanks! I said “at least 91”. How far beyond will depend on a few variables. Actually, a lot of variables. 😉

    • #29239
      Fred Schick
      Participant

      I have several people in my support group who are now 7+ years past diagnosis.  I am in my 4th year and am not on either Esbriet nor OFEV because my body could not tolerate either drug. From my personal experience, I believe one must participate in pulmonary rehab and exercise daily.  A positive attitude also helps.  Those people in my support group who well beyond the five year time-span are active, some are on oxygen therapy and others are have been on OFEV or Esbriet for several years.

       

    • #29242
      Christie
      Participant

      Hi Sylvio @risingzen,

      The prognosis of PF has been discussed many times in the forums, and basically, our broad consensus has been that those numbers are part of a bell curve. Each case is different, and there is so much variability in this disease, it is really hard to predict the outcomes. Especially considering factors like when the diagnosis was given, comorbidities, other health factors, age, etc. Each person’s progression is a different journey than the next.

      What I will say on the subject of elevation (since I do have some experience there…) is that living at higher elevations will not rob you of your time or make your PF progress faster, though you may feel the effects more, especially in later stages of the disease. In fact, having a body that is adapted to thrive at high elevations is GOOD for you and your lungs. High elevation living creates more hemoglobin, and therefore better absorption of available oxygen…. and there is the crux with PF–“available oxygen”. You are right that there is less at higher altitudes. A healthy set of lungs can make do with that. A compromised set of lungs will have a harder time, and THAT affects the whole body’s health. It also makes the heart work harder, and that can cause more problems. That’s where supplemental oxygen comes in. Using O2 provides what the atmosphere can’t for lungs that aren’t in great shape. The altitude itself has little to do with it, though at advanced stages of PF (like in my mom’s case before her transplant), her doctors were advising that she might need to move to a lower elevation in the future, as there’s only so much supplemental O2 can do. I hope that helps.

      Christie

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