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Tuesday, December 16, 2014

NEWS I DIDN'T WANT TO HEAR

Today I found out that I don’t qualify for the drug trial for the new drug for Pulmonary Fibrosis.  The reason is frustrating, both to me and my doctor.  I had two CT scans that determined that I had the disease.  The first one was a regular CT and the second one was a high resolution scan which shows a more detailed look at the lungs.  I had to have a third high resolution scan by the lab who is evaluating everyone in the study.  Three people evaluated the scan.  One person said my scan showed definite Pul. Fibrosis.  The other two said it was not for sure.  Now this would be good news were it not for my pulmonologist and my brother in law (also a pulmonologist) who both say IPF (idiopathic pulmonary fibrosis) is present in my lungs.  They see it even in the third CT scan.  My doctor tried to appeal the decision, but it was not allowed.  The only way he can prove I have it is by doing a lung biopsy, which has it’s own risks.  Dr M does not want to expose me to those risks. He also said there is no guarantee that I would get the drug if I was in the study.

I am disappointed.  i really wanted to be a part of this study.  After talking to my brother in law, he and Dr. M.  decided that for now I will be given a weekly injection of the drug already on the market, which slows the disease process down.  I will have another CT scan in about two months.  If my condition has worsened I would then be a candidate for the new experimental drug study.  However there still would be no promise that I would get the drug instead of the placebo. 

I did learn I have to start sleeping with oxygen because my oxygen level goes too low while I am sleeping.  All of the symptoms plus signs of scaring on my lungs, and two people say I don’t have enough evidence of IPF so they keep me out of the study.  I have to believe there is a reason.

2 comments:

  1. Oh Harriet... I am sorry for the news. I too believe there is something better for you down the road. Those studies can be very frustrating...
    I am also sorry you will not be in Louisville when Debbie and I are in town this upcoming weekend. I am holding you and your family in my heart.
    Love

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  2. How frigging frustrating!!! You have it/you don't have it/you might have it but it's not bad enough. Damn!
    The only "good" thing about not being in the study is that you wouldn't get your hopes up to then find out you were in the placebo group.
    You're a much better person than I am, my friend, to think there must be a reason.
    You keep keepin' on, though, cuz that's what you do.

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