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New Bronchiectasis diagnosis - need advice
MAC & Bronchiectasis | Last Active: 6 hours ago | Replies (33)Comment receiving replies
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
Replies to "@mikejj244 @scoop25 Mike, Scoop's advice has always been spot on for me. He is worth listening..."
@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.
@ejr
Hello Ed!
Thank you for that very informative post. I'm in NJ, or would take advantage of your UT Tyler Dr recommendation, but will look into the option of using the lab you mentioned after reading more about it on line. I also have Bronchiectasis and MAC Intracellular (with small nodule). No symptoms though. Wondering what your Dr's approach is - besides closely monitoring sputum tests. Any info you can share would be appreciated.
Also - very much appreciate this group. The information is so very caluable.
Pat
@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.
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@ejr Ed thanks so much for taking the time to respond. I am definitely going to try and set something up at UT Tyler. I actually live about 3.5 hours west of DFW now in Abilene, but travel to DFW fairly often. I would love to get more insight about your diagnosis, treatment, and results so far and potential for the future. I will be looking into NTM as that is new to me as well. I am not sure how to send private messages yet on here. If you know how can you message me?