• Jim Dawson posted an update 3 years, 3 months ago

    @sandravanzyl
    Thank you for the information. I told the Dr. I was very apprehensive concerning the lung biopsy. He is my second opinion Dr. as I was told to get off of predisone before they could do the biopsy. With a 30% chance of nor finding out what type of Pulmonary Fibrosis I have, just seems too high. Then there is a 2% death rate on top of that. Since there are only a couple of medications that treat Fibrosis I think this is more data for testing purposes than treating PF. I still have one more option and that is to go to a 3rd doctor, which I think I will do, But I have to go to the Veterans Hospital to do that. I am apprehensive about that too.

    • Hi Jim, I was apprehensive when that doctor wanted to get a 2nd opinion , after many visits I finally relented and agreed (my pulmonary function was getting less) and this is when I met Dr DeBoer and she adamantly said NO to another biopsy! YAY! I’ve been dealing with this nasty gagging cough for over 15 years and I just feel so many doctors just passed me on to another specialist ….very infuriating to say the least. I’m currently (since late FEbruary on Mycophenolate) it’s certainly not a cure but dr DeBoer is hoping it will keep my lungs from getting worse. And in a couple of weeks I’m going to Toronto for a 5 day assessment to see if I will be on the list ! Keep your fingers crossed for me Jim …..I hope you will find a better doctor for your lungs because I sure finally did. I’m assuming you live in the States, I am in Canada 🇨🇦 please feel free to email me @. [email protected]

    • Hi @jim-dawson, I just corresponded with a wonderful member of the forums by responding to his post about lung transplantation. In his opening, @les-viegas shared that he had a lung biopsy to get his diagnosis. Might be worth it to try and reach out to him directly to hear about his experience? Was just thinking it might be helpful 🙂

      Cheers,
      Charlene.

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