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How did you develop your Care Team?
I am newly diagnosed with Bronchiectasis and I am struggling to find good care. I am looking into the hospitals that provide multidisciplinary care but I am wondering how you developed your care team and if anyone uses a care center. I live in CT and looking at NYC Langone, Brigham Women’s Lung Cancer Center and Yale Winchester Center for Lung Disease. Does anyone have any experience with these centers?
My pulmonologist is not aggressive and does not return calls so I am in the process of switching, I have an infectious disease dr and an allergist who in my opinion is not an immunologist. I need to be tested for autoimmune diseases that may cause bronchiectasis. It has been murderous to piece together a local team. I am meeting with my PCP tomorrow but I am not hopeful I will receive the right direction or referrals.
Is your pulmonologist the “caption or champion” of your care? It seems I am playing that role with limited experience and knowledge. I started pulmonary rehab but have been released after two weeks because I am strong (and I plan to stay that way:)) . It seems many of the local resources, despite saying they treat bronchiectasis, do not have the expertise, so that is why I am considering a care center. I am wondering if you need a local pulmonologist even when being seen by a center?
In such a short time, I have learned so much from this group and I am in deep gratitude for all those who share their experience.
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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