New Bronchiectasis diagnosis - need advice

@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:

@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

I wasn’t able to produce a sputum sample 2021 when I was coughing a lot and my oxygen was low. I ended up getting a bronchoscopy.

@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.

The only thing I have to add is that I noticed you said you’re about to go on Medicare. Supplement plans with regular Medicare seem to give people more options than Advantage plans when your care/meds may be changing. There are better sources than here for that subject, but a thought to consider.

I second Scoop’s advice to see a pulmonologist who treats bronchiectasis patients. My first pulmonologist (who I think is a good general one) didn’t mention the bronchiectasis finding on the CT or airway clearance despite telling me the CT looked terrible. He’d changed my appt to a phone follow-up.
Long story, but I went to Mayo and they did bronch, adjusted meds, etc. .
That chest pain is concerning to me. Have you seen a cardiologist, had a stress test or calcium scan or further testing? An EKG only shows changes if you’ve had or about to have a heart attack. Talk to you prime MD for referral. I guess I had more than 1 thing..

It would be a very rare medical person who thinks you’re making it up, btw.

@mikejj244 regarding the pain in the left part of your chest, might it be heartburn/Gerd/reflux? Have you tried an anti acid? Or figuring out what might be triggering these episodes? For acid control, try chewing some Tums or taking famotidine or omeprazole. Gerd/reflux is a common comorbidity in our population which is why it comes to mind.

@pacathy It has been a couple of years now, but when the pulmo doctors I have seen in the past drew blanks...they pushed me off onto cardiologist, ent, gastroenterologist. I had stress test, and scope in the heart. I passed the stress test and the arteries were clear enough that I did not need any stents etc. I did stomach scope with gastroenterologist - everything looked normal to him. The ENT doctor did a scope and some CAT scans on throat etc. No significant issues found. It all led me back to lung doctors and where I currently am now.

@scoop I take pantoprazole every day for indigestion/gas or acid reflux. I also had scope with gastroenterologist and it was normal looking to him.

@mikejj244 I sure hope you can get to UT Tyler to get a thorough work up on your Bronchiectasis issues including an induced sputum culture.

@mikejj244
@scoop25

Mike, Scoop's advice has always been spot on for me. He is worth listening to

Like you, I live in Dallas Ft Worth area and started my journey with a local pulmonologist who looked at x-rays done by my PCP and immediately ordered a chest CT. Based on the results of the CT I then had a robotic bronchoscopy to biopsy suspicious area and collect multiple sputum samples . Based on what those tests showed, my local pulmonologist then very strongly recommended I go to Tyler for BE and NTM care.

I have found it well worth the 2 hour drive to go to UT Health in Tyler. I recommend them so highly. That's where I found the experts and coordinated multidisciplinary approach I needed.

The well-known Dr. McShane is no longer at UT Tyler. But the team she left behind has impressed me. Based on her recommendation, I see Dr. Mehta and have been very satisfied with care I receive.

FYI, I have bronchiectasis and confirmed antibiotic resistant Mycobacterium Abscessus NTM and Mycobacterium Intracellular NTM.

I know this because with the guidance of the team at UT Tyler I am able to produce monthly sputum samples at home and mail them in to their lab. The UT Tyler pathology lab is a "reference lab" and even well known centers such as UTMB Galveston send some sputum samples their for advanced testing.

I receive detailed pathology reports viewable online including culture results and genetic sequencing for NTM at the subspecies level and susceptibility testing for various antibiotics.

I have been making quarterly visits in person to Tyler and can do it in a day trip by car as long as there's another driver.

This all may seem overwhelming at this stage for you. I know it was for me a year ago before I got properly diagnosed and learned much more about bronchiectasis and NTM.

This group has been priceless for me. I'm happy to add some information and hope it helps you.

Ed