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ddoran9233 avatar

How did you develop your Care Team?

MAC & Bronchiectasis | Last Active: Jan 23 11:05am | Replies (15)

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Profile picture for scoop @scoop

Hi, When I search for BE/NTM centers in Connecticut I came up with the following list. I do not see Yale or Brigham on the list. I do see NYU Langone. I trust this list. If it were I, I would choose two locations and make appointments. Expect wait time until you can be seen. Keep calling to see if there's anything sooner. They get cancellations all the time.

Show this list to your PCP tomorrow. Perhaps they know someone at one of these locations. Ask your PCP if it's helpful to have a local pulmonologist. Perhaps the PCP will agree to see/treat you if you have a flare in-between visits to the BE/NTM center, possibly making a local pulmonologist unnecessary. Also, ask this question of the BE/NTM team once you are seen. Sometimes local pulmonologists are willing to work with remote colleagues even though they are in different systems. Another question to ask.

Regarding finding an immunologist, also ask your PCP. All allergists are also trained in immunology but they might not specialize in immunology. Immune disorders are rarer than allergies, so allergists do not see these as much as "regular" allergies. Allergists, however, can order immune panels for screening purposes. Lab work might include IgG levels, Ig subclass levels and pneumococcal titers (6 weeks after getting the vaccine). They may also be willing to order genetic testing to rule out CF or immune deficiencies or autoimmune disorders.

Until then, read up on and start airway clearance, which is the mainstay of bronchiectasis treatment.
https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/Find-a-Center

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Replies to "Hi, When I search for BE/NTM centers in Connecticut I came up with the following list...."

@scoop Thank you so much for your input. This makes a lot of sense and provides guidance on questions to ask. Very grateful for your input the link. Airway clearance is very new to me and I have learned a lot from this group. I use a vest and Air Physio device and my mucus feels like glue but I must continue as airway clearance is the hallmark of good health with BE. Regarding the care centers, I plan to call NYC Langone and others to get information. My PCP will take the lead on my care until I can see a different pulmonologist and so far, the ID is fabulous. My PCP cautioned me on the distance of the care centers to local care as it may be hard to receive treatment if they are 2 -3 hrs away. I am thinking they use telehealth AND I know there will be times when someone will need to listen to my lungs. Sounds like it requires a partnership. I will learn more with each call and visit. Thank you again and I am so appreciative

@scoop Thank you for this guidance and I had a great appointment with my allergist. She ordered many panels, including the ones you referenced, and I am receiving good care from her.
I have an appointment in late February with a new pulmonologist which I hope will help guide my care appropriately. My PCP will treat any flare ups until I can connect with the pulmonologist.