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Does Infectious Disease need to be part of overall team?
I see a pulmonologist for bronchiectasis about every 6 months. I have had several bouts over the years with pneumonia and RSV. I have never been referred to an ID doctor. I am doing "okay" right now. Wondering how many of you also have an ID doctor as part of your health team and also wondering how Mayo Clinic feels about the need to include ID for every patient.
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I actually am in your same position with six month pulmonary visits. However, I was referred to an ID specialist last fall who was very thorough. After evaluating previous CT scans and medical data from pulmonologist , I was advice to continue my regimen of airway clearance and see her again after my next pulmonary doctor visit.
Many people do but I do not. I have an excellent pulmonary doc who is an expert in NTM. The infectious diseases doc I did see was not helpful at all. I couldn’t see how he could help me so I just go to the pulmonologist.
@carolinediehl Hmm, this is one of those situations where the answer is the much-hated "I depends."
If you have a highly skilled pulmonologist who is familiar with treating MAC/NTM and you are responding to the standard treatment protocol, you probably don't need an Infectious Disease doc, and your pulmonologist would probably advise you when it is time to add one to your team.
On the other hand, if your pulmonologist is not very experienced in treating NTM, adding the skills of an ID doc would be helpful. Or if you have many other health issues, or limitations on the medications you can take, an ID doc is recommended. Finally, if you don't respond to treatment after 6 months, my pulmonologist says it is time to find another specialist to help treat you.
Are you comfortable and confident in the treatment you are receiving?
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1 ReactionYes and no. My last visit he opened up more about his training. He said he studied under the head of pulmonology at the Cleveland Clinic in Florida. BE is not his top 5 DX treated. I kind of want a bronchoscopy to at least see if I at least have MAC besides BE. He sees improvement in latest CT and feels there is no sense in a bronchoscopy because he doesn't think I could handle the treatment for MAC. Shouldn't that be my decision?
I would not ask for a bronchoscopy myself unless absolutely necessary. It is an invasive procedure with risks of its own, including potential introduction of new pathogens and bleeding.
Instead of a bronchoscopy, if I were in your situation, I would seek the opinion of a bronchiectasis expert - there are more available all the time, you don't necessarily need to travel to Mayo or NJH.
Have you seen the new list?
https://connect.mayoclinic.org/discussion/the-bronchiectasis-care-center-network-33-centers/
Go here to get an appointment at a center near you: https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/Find-a-Center