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Bronchiectasis: New Diagnosis

MAC & Bronchiectasis | Last Active: Apr 15, 2023 | Replies (382)

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@oldkarl

Thanks for the reminder. I started, decades back, keeping written records of health care. Now I know why. I take my own records and compare them to the notes from Mayo, NIH, Univ of Helsinki, ARUP and others. Then, if I am not satisfied with the diagnosis given by one of the labs, I know exactly why, and what I can do, even if the diag is all screwed up. Example: I was diagnosed by a local clinic with chronic bronchiectasis a decade ago, and the doc said I just had an over-reaction to a med. Mayo says differently, and I know now what I really have, or at least I know that my disease is not just an "over-reaction". It is a deadly disease, one of several I have had and fought with for my entire life. And when I do die, at least I will have the satisfaction of knowing what it is, even if the local docs are afraid of it.

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Replies to "Thanks for the reminder. I started, decades back, keeping written records of health care. Now I..."

@oldkarl One thing I have learned from this forum (and I have learned plenty) is that we have to advocate for ourselves. This is a serious disease, and we need to keep our records with us (learned that from Katherine) and be our own best advocate. Thank you. Irene