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.

@sueinmn

@skylark1 The thinking by the docs is that GERD may be a contributing factor to bronchiectasis – the long-term entrance of the acid into the lungs can cause damage. So the advice is to treat the GERD to prevent further damage. I am not a doctor, so I cannot tell you what is the best approach for you. In my case, I don't seem to have it, and have only taken acid-reducing meds briefly to control acid when the antibiotics for MAC were causing a great deal of stomach distress. My primary physician was trying everything to heal my stomach where 18 months of meds had irritated it to the point of constant pain.

Jump to this post

@skylark1 and also if you have GERD or acid reflux do not sleep on your stomach. That's how my doctor says mine happened. I was a stomach sleeper and the acid aspirates into your lungs at night if you're on your stomach, hence, sleeping on a wedge is important or a bunch of pillows. I found a great wedge in the catalog Hammacher Schlemmer that is not such a huge angle as my first one which I hated because it as so big and bulky. I also have a hiatal hernia which doesn't help matters. Nan

REPLY
@nannette

@skylark1 and also if you have GERD or acid reflux do not sleep on your stomach. That's how my doctor says mine happened. I was a stomach sleeper and the acid aspirates into your lungs at night if you're on your stomach, hence, sleeping on a wedge is important or a bunch of pillows. I found a great wedge in the catalog Hammacher Schlemmer that is not such a huge angle as my first one which I hated because it as so big and bulky. I also have a hiatal hernia which doesn't help matters. Nan

Jump to this post

I’m pretty much a side sleeper. In past weeks I’ve piled up pillows to prop myself up & can now also sleep on back – much better! Thank you for tip on wedge- will definitely look into it!

Sent from Cynthia's iphone

>

REPLY

Question: How often should I have CT scans? Had initial x-ray followed by 2 CT scans 3 months apart. Next is to be scheduled in 9 months. It has been 5 months.

Had episode woke up Gasping for breath- had turned over in sleep to ‘bad side’. Couldn’t get enough air then dizzy, sharp pain chest & back, tingling right arm. Thought heart attack. Saw cardiologist, heart fine. Pulmonologist said hyperventilating & something to do with carbon dioxide can cause tingling arm & dizziness & said maybe do x-ray or another CT scan. Since propped up pillows no repeat & can sleep one side & back. Do have some pain in chest when I wake up & take deep breaths at first.

Since I feel better wondering if I should wait with CT scan. It’s a lot of radiation.

How often do people on this forum have scans.

Sorry for long posts- new & have so many questions. 💞

REPLY
@skylark1

Question: How often should I have CT scans? Had initial x-ray followed by 2 CT scans 3 months apart. Next is to be scheduled in 9 months. It has been 5 months.

Had episode woke up Gasping for breath- had turned over in sleep to ‘bad side’. Couldn’t get enough air then dizzy, sharp pain chest & back, tingling right arm. Thought heart attack. Saw cardiologist, heart fine. Pulmonologist said hyperventilating & something to do with carbon dioxide can cause tingling arm & dizziness & said maybe do x-ray or another CT scan. Since propped up pillows no repeat & can sleep one side & back. Do have some pain in chest when I wake up & take deep breaths at first.

Since I feel better wondering if I should wait with CT scan. It’s a lot of radiation.

How often do people on this forum have scans.

Sorry for long posts- new & have so many questions. 💞

Jump to this post

@skylark1 My scans are every six months, but I think the general rule is once a year.

REPLY
@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's iphone

>

Jump to this post

@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.

REPLY

@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!

REPLY
@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!

Jump to this post

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.

REPLY
@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.

Jump to this post

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.

REPLY
@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.

Jump to this post

@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

REPLY
@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

Jump to this post

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

REPLY
@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

Jump to this post

@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)

REPLY
@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)

Jump to this post

@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

REPLY
Please sign in or register to post a reply.