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New Bronchiectasis diagnosis - need advice

Posted by mikejj244 @mikejj244, Dec 1 6:29am

I believe I have had Bronchiectasis for years. I started having exacerbations with pain, extreme fatigue, tightness etc. Pulmo doctors just kept on giving me more and more Asthma medications ( Inhaled steroids, tezspire, formotorol etc etc) which worked somewhat for a while then stopped pretty much. Specialist after specialist were mostly clueless, and just tried to blame me, as if I was not doing my medications etc. I am now seeing a Pulmo at UTSW in Dallas and, I am now asked to produce sputum culture at home. I have not been able to do so. It is so tight in there and very little comes up at a later time, when I "clear my throat". I am about to be on medicare and am terrified by what may lie ahead. I am currently not on any direct treatment for Bronchiectasis other than saline because I have not submitted culture. I was so thankful I found this group to hopefully finally talk with people who know what I am dealing with. Any and all advice etc. is greatly appreciated.

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spectrumcyclist | @spectrumcyclist | 1 day ago

I had a similar experience. About 13 years ago , after years of complaints, a pulmonologist in the group I was seeing said I had bronchiectasis for years. However, he would not give me antibiotics— he just wanted to build up my immunity. I was fortunate to be referred to Temple University Lung Center and within weeks of starting tobramycin therapy, dramatically improved. There are ups and downs with this disease, and my salvation has been lots of aerobic exercise. To give a sputum sample, I take the bottle with me on a bike ride and after a few miles, especially after going uphill, I have no problem producing one. Carry the bottle while doing whatever is the most challenging aerobic exercise you can do, even if it is just walking uphill, and you should be able to produce something.

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jgb1997 | @jgb1997 | 1 day ago
In reply to @blm1007blm1007 "@jgb1997 Do you know that National Jewish Health and Mt. Sinai in NY work together. Going..." + (show)
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@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

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@blm1007blm1007
Barbara- hello from NJ. Sounds like you are doing great and thank you for the additional lab info. Your post is encouraging!

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smtdoc | @smtdoc | 8 hours ago
In reply to @ejr "@mikejj244 @scoop25 Mike, Scoop's advice has always been spot on for me. He is worth listening..." + (show)
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@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

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@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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