1. < MAC & Bronchiectasis

Bronchiectasis: New Diagnosis

Posted by navylady @navylady, Jul 26, 2018

New to your group. Non-smoker. Pneumonia x6 in 12 years, double pneumonia twice. Was diagnosed with chronic bronchitis and COPD for past 15 years, now pulmonologist based on x-rays and MRI has diagnosed no COPD, yes bronchiectasis. Take advair 250/50 twice a day. Past ten days I am increasingly gurgling, wheezing, some chest pain. I have recently moved to Florida which I like but am having long wait times to get into see a family care NP who can hopefully refer me to a pulmonologist. I walk 20-30 minutes a day. Any ideas how to manage this now. Am worried about getting pneumonia again. I went to one walk-in clinic at a reputable hospital. They literally did nothing except take x-rays. Didn't even talk to me. Just billed $2000+ for x-rays. Do I try another walk-in clinic. I feel very alone right now with this chronic medical problem.

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Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 27, 2020
In reply to @skylark1 "Thank you so much for the information. I’m grateful. No, I haven’t been tested for infection...." + (show)
@skylark1

Thank you so much for the information. I’m grateful.
No, I haven’t been tested for infection. My bought with pneumonia & severe bronchitis spring 2018 & 2019 were treated with antibiotics (prednisone & steroid inhalers) but there was no testing involved. Decades ago I worked in a lab and it was routine to run an antibiotic sensitivity tests when infections were detected. In my own experience in the past plus decade, my infections for whatever were not even identified, let alone determine what antibiotics were effective. It’s a here try this- type of treatment. And I have severe stomach & diarrhea from them (I have IBSD & microcellular colitis which doesn’t help!). At my next visit I will definitely ask my pulmonologist.
Thank you again.

Sent from Cynthia&apos;s iphone

>

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@skylark1 - Cynthia the reason it is so vital to concretely identify MAC or NTM (Non-tubercular mycobacteria) of which it is a subset, is that it is slow-growing, often antibiotic-resistant, extremely difficult to eradicate and does not respond to typical antibiotics. Treatment is generally by a combination of antibiotics for a long period of time, 18 months to 2 years is not unusual. It is becoming more widely known, but still not understood, so even some pulmonologists have limited experience. I would suggest you do some more reading and arm yourself with a lot of questions, then if MAC is diagnosed be sure your doc is experienced in treating it or ask to be referred to one who is. I recently changed pulmonologists, and even though the first was experienced with MAC, I learned after the fact that he was a "one-size-fits-all" sort of doc, not open to trying different things if the first one didn't work. So glad I switched, even though I have to drive all the way across our metro area for the new doc.

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1 reply
alleycatkate | @alleycatkate | Jan 27, 2020

@skylark1 ...Regarding pillows vs wedge...My Dr at Mayo said absolutely no pillows...sleeping of pillows contorts the body into a bent position that can increase pressure on your abdomen and aggravate symptoms. He suggested the wedge and no eating or drinking for 3 hours before bed. It helps a lot!

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1 reply
poodledoc | @poodledoc | Jan 27, 2020
In reply to @alleycatkate "@skylark1 ...Regarding pillows vs wedge...My Dr at Mayo said absolutely no pillows...sleeping of pillows contorts the..." + (show)
@alleycatkate

@skylark1 ...Regarding pillows vs wedge...My Dr at Mayo said absolutely no pillows...sleeping of pillows contorts the body into a bent position that can increase pressure on your abdomen and aggravate symptoms. He suggested the wedge and no eating or drinking for 3 hours before bed. It helps a lot!

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Hello Skylark, I agree wedges are much superior to pillows. I use one that you place between your box springs and mattress. You can learn more at Amazon see: https://www.amazon.com/Avana-Mattress-Elevator-Incline-Support/dp/B07R8GLK6B/ref=sr_1_5?crid=23HA0AZBCN2G5&keywords=mattress%2Belevation%2Bwedge&qid=1580166465&s=home-garden&sprefix=mattress%2Belev%2Cgarden%2C162&sr=1-5&th=1 Another thing you could do is elevate the head of your bed 4-5". I have seen on medical sites that pillows can make your GERDS/Reflux worse.

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poodledoc | @poodledoc | Jan 27, 2020
In reply to @sueinmn "@skylark1 - Cynthia the reason it is so vital to concretely identify MAC or NTM (Non-tubercular..." + (show)
@sueinmn

@skylark1 - Cynthia the reason it is so vital to concretely identify MAC or NTM (Non-tubercular mycobacteria) of which it is a subset, is that it is slow-growing, often antibiotic-resistant, extremely difficult to eradicate and does not respond to typical antibiotics. Treatment is generally by a combination of antibiotics for a long period of time, 18 months to 2 years is not unusual. It is becoming more widely known, but still not understood, so even some pulmonologists have limited experience. I would suggest you do some more reading and arm yourself with a lot of questions, then if MAC is diagnosed be sure your doc is experienced in treating it or ask to be referred to one who is. I recently changed pulmonologists, and even though the first was experienced with MAC, I learned after the fact that he was a "one-size-fits-all" sort of doc, not open to trying different things if the first one didn't work. So glad I switched, even though I have to drive all the way across our metro area for the new doc.

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Hi Sue, Can you give us any tips on how to find a good Pulmonologist that is truly experienced with MAC and/or NTM? Thank you for all the helpful information that you have posted.

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1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 27, 2020
In reply to @poodledoc "Hi Sue, Can you give us any tips on how to find a good Pulmonologist that..." + (show)
@poodledoc

Hi Sue, Can you give us any tips on how to find a good Pulmonologist that is truly experienced with MAC and/or NTM? Thank you for all the helpful information that you have posted.

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@poodledoc Let this group know where you're located and you may get a recommendation. Otherwise, contact your nearest medical school with a teaching hospital and start asking. If you have access to National Jewish Health or Mayo, contact them...
Sue

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1 reply
poodledoc | @poodledoc | Jan 28, 2020
In reply to @sueinmn "@poodledoc Let this group know where you're located and you may get a recommendation. Otherwise, contact..." + (show)
@sueinmn

@poodledoc Let this group know where you're located and you may get a recommendation. Otherwise, contact your nearest medical school with a teaching hospital and start asking. If you have access to National Jewish Health or Mayo, contact them...
Sue

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Sue, I have homes close to Nashville, TN and just north of Tampa, FL. There is a Mayo clinic in Jacksonville, FL about 3 hrs away and a medical school in Gainesville, FL. about 2 hrs away. We also have family in Colorado about 1 hour from NJH. I am not completely happy with my current Pulmonologist in Nashville, TN. and I am thinking about switching. Any recommendations appreciated. Thanks

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2 replies
irene5 Irene Estes | @irene5 | Jan 28, 2020
In reply to @poodledoc "Sue, I have homes close to Nashville, TN and just north of Tampa, FL. There is..." + (show)
@poodledoc

Sue, I have homes close to Nashville, TN and just north of Tampa, FL. There is a Mayo clinic in Jacksonville, FL about 3 hrs away and a medical school in Gainesville, FL. about 2 hrs away. We also have family in Colorado about 1 hour from NJH. I am not completely happy with my current Pulmonologist in Nashville, TN. and I am thinking about switching. Any recommendations appreciated. Thanks

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@poodledoc Dr. Richard LaRue at Vanderbilt is excellent. When we lived in Clarksville/Cunningham TN in 2016/2017 he was my ID doctor. Dr. Mark Peters at St.Thomas West is also very good, but not a MAC specialist. (Irene5)

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2 replies
Mentor
Sue, Volunteer Mentor | @sueinmn | Jan 28, 2020
In reply to @irene5 "@poodledoc Dr. Richard LaRue at Vanderbilt is excellent. When we lived in Clarksville/Cunningham TN in 2016/2017..." + (show)
@irene5

@poodledoc Dr. Richard LaRue at Vanderbilt is excellent. When we lived in Clarksville/Cunningham TN in 2016/2017 he was my ID doctor. Dr. Mark Peters at St.Thomas West is also very good, but not a MAC specialist. (Irene5)

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@poodledoc This is what makes Connect work - thanks Irene (@irene5). Poodledoc - Vanderbilt is where some of our participants find their physicians. Not sure they "specialize" in MAC, but there are some docs there well-versed in treating it. There are a number of people here who seen the docs at Mayo in Jacksonville. Reach out to Terri (@windwalker) - if she is not one of them, I bet she knows who is. Good luck - having a doc who is knowledgable and you trust is vital in dealing with difficult conditions.
Sue

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1 reply
yaggi01 | @yaggi01 | Jan 28, 2020
In reply to @irene5 "@poodledoc Dr. Richard LaRue at Vanderbilt is excellent. When we lived in Clarksville/Cunningham TN in 2016/2017..." + (show)
@irene5

@poodledoc Dr. Richard LaRue at Vanderbilt is excellent. When we lived in Clarksville/Cunningham TN in 2016/2017 he was my ID doctor. Dr. Mark Peters at St.Thomas West is also very good, but not a MAC specialist. (Irene5)

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@poodledoc...I agree with @irene5 with regard to Dr. Richard LaRue at Vanderbilt (ID doc). He is wonderful....very knowledgeable and kind/compassionate!! There is a great pulmonary doc at Vanderbilt, Dr. James Tolle. These two docs work together on my behalf and are great with communication through the patient portal and with phone calls as well. Good luck finding the right team for you!!
Blessings, Yaggi01

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alleycatkate | @alleycatkate | Jan 28, 2020
In reply to @sueinmn "@poodledoc This is what makes Connect work - thanks Irene (@irene5). Poodledoc - Vanderbilt is where..." + (show)
@sueinmn

@poodledoc This is what makes Connect work - thanks Irene (@irene5). Poodledoc - Vanderbilt is where some of our participants find their physicians. Not sure they "specialize" in MAC, but there are some docs there well-versed in treating it. There are a number of people here who seen the docs at Mayo in Jacksonville. Reach out to Terri (@windwalker) - if she is not one of them, I bet she knows who is. Good luck - having a doc who is knowledgable and you trust is vital in dealing with difficult conditions.
Sue

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@poodledoc ...I went to Mayo in Jacksonville.... Dr Leventhal was fabulous...unfortunately he retired June 2019 but highly recommended his replacement, Dr Margarat Johnson. I am pretty sure that Terri (windwalker) has seen her this past year as she is under regular treatment there. Good luck. The treatment at Mayo is so very excellent...Not sure you could go wrong. Kate

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