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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
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6 ReactionsScoop said it all! To stay positive sounding, I will say to continue to advocate for your health! Here in MN my cardiologist, ID doc, and pulmonologist all are at UMN which to my knowledge is not a NTM/BE Center, BUT they partner with the Mayo Rochester Clinic and ARUP Lab in SLC to give their NTM/BE/MAC/MAI the most comprehensive and up-to-date care available.
As a retired UMN organic and biochemistry professor, I'm thrilled for the willingness of two separate care teams to avail each their own knowledge to the other for optimal quality patient care. Proof positive that there are some great and caring professionals on our side!
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5 ReactionsCheck the NTM Care Center Network. NUU Langone is on the list. I think they are a major player in bronc/NTM treatment.
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1 Reaction@ddoran9233 My pulmonologist helped build my team, which includes a Speech Therapist, ENT, and rheumatologist. Between them all relevant tests have been offered and analyzed, mds adjusted and Speech therapy helped with choking and reactive airways. If I test positive for infection in the future, they have an ID doc on staff too.
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3 Reactions@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
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1 Reaction@terrimn Thank you for the feedback and you are truly fortunate these teams work together to provide your care.
@sueinmn Thank you for sharing your experience
@sma2 I agree, my only concern is that at this time, I have BE but not NTM which seems to be their primary focus. they are still a center for BE so I will definitely reach out to understand more. I also learned about Mt Sinai in NY. Thank you for your response
@sueinmn , what ENT stands for?
Ling
@wangling Ears, Nose and Throat doctor, technically known as otolaryngologist.