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@sueinmn

Coco - I can't begin to tell you how frightened I was by my bronchiectasis diagnosis at first. Unlike you, I was very ill for months (actually years) with undiagnosed pseudomonas and MAC infections and a sharp-eyed radiologist recognized the problem on an x-ray. It took over a month to see the pulmonologist and longer still to get a CT, an exact diagnosis of both infections and begin treatment. Learning all I could about the condition, and realizing there are treatments for the infections and the lungs helped me immensely. 2 1/2 years later, I am still learning, especially from people in this group who share my journey.

I too wish I had been more conscious of feeling "not quite right" for a very long time, but that's the past - now I pay better attention. But it is very important to get a more exact diagnosis of what caused the condition and figure out whether it is treatable. My lungs had numerous large pockets of infection - medication and airway clearance reduced or eliminated those, and now I just have to deal with the actual bronchiectasis, which differs in severity in each lobe of my lungs.

Here is one thing I learned after over a year that I wish I would have understood much sooner - you need not just a pulmonologist, but one who is experienced in treating bronchiectasis specifically. It is not the same as COPD or asthma, it is what I call a "life sentence" not a death sentence, and it requires someone who understands. Also, one diseased lobe in a lung does not necessarily limit your life - just demands extra caution and vigilance. My friend has been living a great life for over 40 years without 1/3 of each lung due to a different medical issue.

That said, after 2 1/2 years, I have beat one infection, controlled the other, healed some of the lesions in my lungs, and gotten back to being able to exercise and live my life.
Let us know what you learn as you go forward.
Sue

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Replies to "Coco - I can't begin to tell you how frightened I was by my bronchiectasis diagnosis..."

Sue- Thanks so much for your reply. I can't tell you how much better I am feeling after posting and reading replies from this great group. I feel much better about my future.

Hello Sue, You mention "you need not just a pulmonologist, but one who is experienced in treating bronchiectasis specifically" Any tips on how to locate a pulmonologist with a lot of bronchiectasis experience? Thanks for all your good input. Bill