• Frances Gilbert for Jesse F Gilbert jr became a registered member 3 years, 1 month ago

    • Hello Frances, thank you for joining your pulmonary fibrosis forum. Welcome!

    • Its been quite awhile since I posted. I am the wife of a patient with IPF. We are a bit odd as my husband is 100% disabled by the VA. We did not have to fight to get him the help he needed but we are entering a new time where changes are occurring faster and faster. In 2017 I noticed him walking upstairs and being short of breath. After nagging to quit smoking we went to our family pulmonologist. He diagnosed him
      with a none fatal lung disease and put him on steroids. Life went on.. 2018 at his check up he “flunked” his PFT and had a CT scan . Fast forward we were visiting in Montana and he was sick and in ICU. Rapid trip home into Doctors a week later and a Thoracotomy vide assisted ( he has had come muscle spasms )
      now we are 2.5 years into this journey there will be no transplant ( his choice) he has been on Esbrit with good results ( His PFTs are slowly getting worse ) .. He has been on 8 L 24/7 and he has horrible desaturation and he continues to plug on to his future… With his journey with Esbrit he has not lost one pound he stays the same. It frustrates him as he is eating low calorie but you know its such a new medicine all side effects are not known. As far as the VA goes no complaints we chose to use our Medicare and Fed Blue Cross . If anyone has been in the military and is having any physical issues please go the the Burn Pit Registry on the VA website. And join the registry, My husband spent 35 years in the Army and lived down wind of the Burn Pits In Balad Iraq where they burnt trash to Lithium batteries, and created toxic fine particle inhalants. Thanks for Listening

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