Craig Klopfleisch
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I have probably had it since 2015 or before. Initially mis-diagnosed. Finally diagnosed 2018. Esbriet or Ofev suggested, but without guidance so I waited. After doing more research myself I requested Esbriet. Mild side effects, treated with 2 Imodium a day and Metamucil. Sounds odd, but works for me. Tried NAC for a while to help with cough along with lots of other things, only things that work are cough medicine and low dose prednisone. I only use O2 when at high altitudes (like Colorado), or exercising. I live at about 900 feet elevation, and on all but really hot, humid days I can do normal activities without much trouble. I only with I had started Esbriet right away, think it might have slowed progression earlier.
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@pingxu0713
On my first visit I believe they just reviewed my tests from elsewhere since they were recent and insurance likely would not cover duplicate tests so soon. There are not a lot of treatment choices for IPF as you will soon discover if you have not already. So at best you should find out whether Cleveland Clinic agrees with your current diagnosis and whether the “standard of treatment” you are receiving, or that has been recommended to you, is consistent with their assessment. They are the 4th place I went after 2 regional pulmonologists and the Ohio State COE and I only wish I had begun at Cleveland (but how is one to know?). I would not hesitate to be seen by anyone there (I have interacted with several of the Drs. and currently see a nurse practitioner who I love).