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New Bronchiectasis diagnosis - need advice
MAC & Bronchiectasis | Last Active: 7 hours ago | Replies (33)Comment receiving replies
@scoop Thank you so much for all the good information. I did not realize there were specialty centers. I am currently at University of Texas Southwest in Dallas which is probably the best care center in general in that area. My doctor there supposedly specializes in Bronchiectasis, however, this facility does not appear to be listed. I will have to consider moving to either UT Tyler or Baylor possibly. I would definitely be interested in getting sputum induced so I can finally get an accurate diagnosis and start targeted treatments more quickly. I have been trying to do the sputum collection for months now and am suffering all the while. I may also just quit the Yupelri immediately or taper off to see if that helps. I will be looking at the links you provided etc. to get more education on the subject. If I can get access to the best care and treatments, what improvements are possible given time?
Replies to "@scoop Thank you so much for all the good information. I did not realize there were..."
@mikejj244 I had an induced sputum with the first visit I had with the specialist pulmonologist in Tyler. I did the 1. saline nebulization first, 2. Aerobika second, 3. postural drainage third( on the reclining examination table with pillows etc.) and then the 4. respiratory therapist did percussion cupping on my lungs in the back. All this before my doing a strong huff cough to get the sputum up and out. I was able to bring up a large amount of mucus/sputum.
Since than I have been asked to give sputum for testing by three different pulmonologists without all the above and do not get a very good sample for testing during the office visit. It is disappointing that they expect us to bring up a good sputum sample without the above or at least doing all except the respiratory therapist. However, all four points are best.
I believe we need to ask for and somewhat insist to have a respiratory therapist ready and there when we have our appointment with the pulmonologist to help to do all the above points. If they don't do it on a regular basis with a PT than I think one should ask that they have one ready and there for the appointment with the pulmonologist.
Just a thought and hope it could/would be arranged by the pulmonologist if one needs a good sputum sample.
Barbara
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@mikejj244 What you may be able to expect in terms of improvement really depends on what your sputum cultures and CT scan show. If an infection is identified, treatment is tailored accordingly. Antibiotics for pseudomonas, antifungals for fungal growth, combination antibiotic therapy for NTM, or sometimes “watch and wait” for NTM depending on severity. And if nothing grows, your team may look at stepping up airway clearance.
Potential improvements, once the underlying issues are addressed, can include reduced coughing, better sleep, feeling better, and weight gain if that is an issue. Your doctor may consider starting you on Brinsupri, the first FDA approved pharmaceutical for non-cystic fibrosis bronchiectasis.
Your pulmonologist might also recommend (no particular order) a percussion vest for daily use, pulmonary rehab, bronchoscopy, induced sputum sample, blood work, and of course a review of your current medications.
You mentioned you’re suffering, would it be possible to share a few specifics?
PS - are you using 7% hypertonic saline in your nebulizer?
PPS- if you change care groups, I'd suggest UT Tyler. If it's geographically undesirable, it will be worth it once you get there. Call and make an appointment ASAP as there's usually some wait time. And get on the cancellation list. You can always cancel the appointment once you have one.
One of these docs is from UT Tyler: