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kwi (@kwi)

What is the role of an ID doctor?

MAC & Bronchiectasis | Last Active: Sep 14 7:49pm | Replies (12)

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@sueinmn

@kwi You are echoing the frustration so many of us here have felt with our doctors when it coms to treating MAC & bronchiectasis! You are definitely on the right track seeking care from the best.

Part of the problem is that, even though Connect & NTMir have given us a great deal of knowledge – and the impression that a LOT of people have Bronchiectasis & MAC – these are rare conditions, and there are few articles in the monthly journals that professionals use to keep up on the treatments.

What ends up happening is that they check for the treatment "protocols" through their research portals – and off we go into the adventure of antibiotics.

What is the role of the ID doc? To treat the underlying infection presented to him by the referring specialist. Depending on the professional connection between them, and their clinical protocols, it is usually the pulmonologist who orders the cultures and scans to follow the progression of the infection.

It sounds like, your pulmonologist is a little familiar with MAC & Bronchiectasis, because they did recommend the nebs with saline. As for the lack of instruction on equipment cleaning…that could have been lack of time, my education came from an experienced pulmo nurse – most docs don't have them any more. My daughter's instruction came from a Respiratory Therapist in the Pulmo Clinic – quite rare to have one on staff.

But, it sounds like the ID doc is not, or they would have understood the importance of airway clearance.

It is great that you have an appointment with NJH. They should be able to refer you to a pulmonologist near you for maintenance care. Any exacerbations or adjustments would then be handled through consultation with them.
Please let me know how your appointment goes at NJH, and the plaan of action they recommend.
Sue

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Replies to "@kwi You are echoing the frustration so many of us here have felt with our doctors..."

Thank you Sue. It sounds like I need to rely on my current pulmonologist for now and hope I don’t get sick before my visit to NJH. I’m just concerned that if I get sick I’ll be bounced between the pulmonologist and ID doctor but mostly be told I should have started the treatment. I already feel like they must think of me as a recalcitrant patient since I am resisting taking the antibiotic treatment at this time and they don’t know what to do with me.