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I was diagnosed a just over a month ago with emphysema by a cat scan. I am only 44 and a nonsmoker. I have never smoked other than the occasional cigarette out with friends but my mum smoked when I was a kid. I have been tested for alpha1 and my levels are normal and have mm gene (normal). No one is able to explain how I possibly have emphysema. I have seen 2 pulmonologists and have no answers. I am scared as I do not know how quickly this will progress. My FEV1 has stayed around 77-80% but my TLCO (gas exchange) dropped 10% in the last year to 67%. I know these numbers are not bad at the moment but if my TLCO continues to drop at this rate it won't be good. My doctor said they the TLCO is equally as important as the FEV1 and the drop was a concern to him. My RV and TLC are steadily increasing which is not good either. Just scared as I have 3 young children whom mean the world to me. I am feeling terribly depressed and isolated. None of this makes any sense to me. Can anyone give any insight on the drop in TLCO? How quickly could this progress? . I going to see an alpha 1 specialist who will test for rare gene defects in January. I am hoping they will be able to provide some explanation of this. If you have any insight please let me know. Thanks for any input.
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