• Claudia Sundberg posted an update 4 years ago

    Hi Charlene
    In regards to the HRCT scan I had one scan done in 2016 without dye and the other this year with dye. What I found interesting was no one said anything about the ground glass appearing on the 2016 scan and how they say it has increased in 2018. I think I would have wanted to know that. Even though I had the scan my doctor said the gold standard would be the lung biopsy.
    I read your column on living with this disease and I find there are days when I am feeling good and other days not so good. I can go several nights with no coughing but other nights can cough all night long. I find the cough is worse in the mornings and better as the day goes on. I never go anywhere without a water bottle which helps me battle through. I have started my 8th week on Esbriet and so far it has not alleviated my cough. I’m finding the information that people are posting to be of great help and strive to keep putting one foot in front of the other.

    • Hi @claudia-sundberg, thanks for getting back to me and sharing a bit more about your experiences. I can imagine it was frustrating to hear of the ground glass increasing this year compared to 2016, even though you didn’t even know about it 2016. I agree, in that, I would have wanted to know that as well!

      Good tip re: bringing a water bottle with you to help suppress the cough. That is a good idea! Glad you are finding the forums helpful, there are a lot of great people on this site so please don’t hesitate to reach out and connect. Wishing you nothing but the very best.
      Cheers,
      Charlene.

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