Forum Replies Created

  • Robert

    June 22, 2019 at 5:15 pm in reply to: Has Pulmonary Fibrosis Changed Your Appetite?

    I was diagnosed with PF in July 2017 & referred to Mayo Clinic in Rochester for treatment.  Started on Cellcept & Prednisone and still on these.  Dry cough, SOB, sleep problems & fatigue have been my most problematic symptoms until January 2019.  Now since January 2019 have been having increased loss of appetite, able to eat only small amounts at meals, and changes in taste.  Have lost 30 pounds since January (192 then & now 161).  Because of rapid fibrosis progression since October 2018 was referred for lung transplant evaluation in March. Denied for transplant at Mayo & university of Iowa due to  history of heart disease & getting stent for new artery blockage found during Mayo evaluation.  Am now scheduled for transplant evaluation at Cleveland clinic July 22-25 and hoping I will be approved. On supplemental Oxygen 3 L at night, 5L daytime.  Even the simplest of daily activity results in SOB.  I have found this forum to be very beneficial in knowing how others suffer from this disease and knowing I am not alone.  This is my first post so apologize if I have rambled.