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New Bronchiectasis diagnosis - need advice
MAC & Bronchiectasis | Last Active: 6 hours ago | Replies (33)Comment receiving replies
@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:
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@scoop I have these episodes where I have pretty severe pain in the far upper left chest area. I have tightened breathing even with the loads of asthma meds I am taking. I do not generally wheeze anymore like I did as a child. The 7% saline and coughing that just got added like 2 months ago seems to help more than the asthma meds. I have extreme fatigue to the point where my life is on hold. This may last a few days to a week or so, but it seems like they are more frequent and lasting longer. The pain is bad enough that I put ice packs on my chest which helps. If I go to the doctor or ER and tell them my chest hurts and I am having tightness in my breathing etc. then they do EKGs every single time. When that comes back ok, they have no idea what to do other than give me more of the same meds I already have taken at home. Maybe give me a steroid shot that doesn't do much of anything now days. They can't see any signs of a bacterial infection, no flu, covid etc. so usually no antibiotics or viral meds. They probably think I am crazy or making it all up. Basically a big waste of time and money. So I tend to just self medicate, rest and ride it out. Once these episodes subside and everything calms down, I do fairly well... until the next time. I refuse to give into this disease and just keep on going. Been on this "merry-go-round" for many years. I raised two kids and held my own in the workplace in spite of it.