New Bronchiectasis diagnosis - need advice

@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

@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

I was diagnosed with Bronchiectasis more than 6 months ago and an MRI shows a very small tumor on my left lung. I really like my Pulmonologist but he has said nothing about treatment for the bronchiectasis; instead ge changes my asthma inhaler dosage. I'm really concerned about the bronchiectasis because I know so little about it. I'm fatigued most of the time and having more difficulty breathing but I'm more irritated at the fact that I feel neglected when it concerns my lung issues. Suggestions anyone?

I was diagnosed with Bronchiectasis more than 6 months ago and an MRI shows a very small tumor on my left lung. I really like my Pulmonologist but he has said nothing about treatment for the bronchiectasis; instead ge changes my asthma inhaler dosage. I'm really concerned about the bronchiectasis because I know so little about it. I'm fatigued most of the time and having more difficulty breathing but I'm more irritated at the fact that I feel neglected when it concerns my lung issues. Suggestions anyone?

@meh3 https://www.bronchiectasisandntminitiative.org/Find-Care/Care-Center-Network/General-Information

@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
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 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?