New Bronchiectasis diagnosis - need advice

@jgb1997 Do you know that National Jewish Health and Mt. Sinai in NY work together. Going into NYC even from Jersey can be a chore.???? NJH has the best lab for testing sputum in the US...and Tyler is probably just as good. They, so far, are the only two labs that can identify specifically the type of MAC involved....from my understanding...however... I maybe wrong since you do know you have Intracellular. Where was your sputum tested?
Hello to my home state in NJ.. I have family in Belmar.
I have been in OKC for years now and have gone to Denver and Tyler for care. The Denver pulmonologist put me on watchful waiting (2023) and I continue to keep myself on watchful waiting. I just turned 83 and 2 months "young." So it is possible to stay feeling well for a good while.. I mask always in public. I have had a small count of intracellular since Oct. 2023 but chose not to go on the antibiotics and continue to watch it. It has not grown much per the last sputum test. I also have a small nodule. I feel well and have not had an exacerbation. Just the need to clear mucus several times a day and of course during the nebulizing sessions. Some mornings I feel tense after my "therapy" sessions of exercise, nebulizing, postural drainage and huff coughing.
Barbara

@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

@ejr
I am so glad to read the info about Tyler! As a Dallas based MD. with NTM and bronchiectasis I was within the last month not able to find anyone at UT Tyler who knew about a specific program there and when I searched for a particular provider with that program, I was told he was no longer active. I guess you need to know who to talk to! Instead I am heading to National Jewish in Denver in Feb.

@ejr Ed,
Thank you for your post. Very interesting journey you have. Nice to hear you are happy with your Dr and treatment plan. Can I ask what your plan is? I also have MAC and at the crossroads of starting Big 3.

@jgb1997
To answer your question, my treatment plan is to diligently perform airway clearance therapy twice daily, submit monthly sputum samples, see a pulmonologist every 90 days, and have annual pulmonary function tests and chest CT scans.

In the absence of any symptoms from my NTM infections, and to prioritize quality of life, my team of doctors recommends deferring the start of any antibiotic treatments.

So far so good. Other than devoting 2 hours every day to nebulizing and airway clearance activities I feel that my life is pretty "normal" which is a win.

I have been unable to schedule with UT Tyler. I can't seem to get past the automated phone attendant. When I reply that I need an appointment with the Pulmonary dept, or Bronchiectasis and NTM Center. It transfers me back to the same automated phone attendant in an endless loop. This is after if asks if I have seen anybody these in the last 3 years which is no. Not sure what is going on. Does anybody have a specific doctors name that maybe I can search for? Thanks!