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Hi Sandra. Below is one of the most thorough recounts of trying to eliminate a PA infection. Everything said so far is also relevant. It is persistent and can be very dangerous if not addressed aggressively. Unfortunately it may also get yo a point of being manageable only and never cured. You should insist on connecting with another INFECTIOUS DISEASE Specialist and eliminate all possible trigger sources in.your Environment.
See here:
https://www.bronchiectasisandntminitiative.org/...
be Well
Sandra, the resource that Roland recommended is a very good one. Also, I was wondering if you’ve had a bronchoscopy?
I do have COPD which, although I became more limited, I managed to live with and continue to do most things I always did, in moderation, until Wegener's disease entered my life. It is always hard to say which is causing what but I know that I am now about 30% of the level of function I was prior to that. I spent the last 1.5 years working hard at rehab and building back my strength. I hadn't used supplemental oxygen at all for several months until this latest exacerbation. I actually feel fortunate compared to so may here. I find these setbacks quite frightening. Trying to stay calm and stay positive which I usually am able to do. I so feel for you walking around with that horrible infection. You must feel like a time bomb. Thanks for asking about me.
Thank you, Kathleen. Unfortunately, I have had it for 7 years and it doesn’t look like that is going to change, I have been able to manage it thus far with one hospitalization due to a virus. Thank you for your reply. Do you have COPD? What type?
I have not but it is something docs worry about. I have an autoimmune disease that leaves me so immunocompromised and this sounds really hard to treat w/o that added to the mix. I hope you can get some good care and be treated for it effectively for it Sandra.
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