I was recently diagnosed with Bronchiectasis.

Posted by mmteach @mmteach, May 10, 2016

I was recently diagnosed with Bronchiectasis. No symptoms yet just starting different tests- another CAT scan, pulminary function test, and possible bronchoscopy. Any advice/suggestions would be greaty appreciated. Thank you!

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@gbippy

I was taken off albuterol and put on an inhaler Anora. It contains no steroids. Steroids are not good for you. It has caused me weight gain and Tracheobronchomalacia (collapsed airways). I’m sure your aware there is no cure for Bronchiectasis. You really need a good infectious disease doctor to have you on a antibiotic to maintain your illness. This is so you don’t have flare ups. I was treated in the beginning of my disease wrong and now I am paying for for. Please get a good doctor who specializes in a topical disease research him well. Good luck.

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Hi Gloria & @alecia52 – It is always helpful to hear each person's experience. Like every other disease or condition, everyone is affected differently, with different severity, underlying conditions, etc.

For example, I have managed fine with levalbuterol, 7% saline, some meds to thin mucus, and antibiotics only for a flare. But the Big-3 antibiotics, not so much! Others are not so fortunate, and the search for effective management is an ongoing process.

Alecia, do you have any more questions for us?
Sue

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@sueinmn

Hi Gloria & @alecia52 – It is always helpful to hear each person's experience. Like every other disease or condition, everyone is affected differently, with different severity, underlying conditions, etc.

For example, I have managed fine with levalbuterol, 7% saline, some meds to thin mucus, and antibiotics only for a flare. But the Big-3 antibiotics, not so much! Others are not so fortunate, and the search for effective management is an ongoing process.

Alecia, do you have any more questions for us?
Sue

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@sueinmn, @gbippy , @alecia52, @colleenyoung, and all…
Well, Goody. I saw my Mayo pulmonologist last week. He diagnosed brachectasis, a new one for me. I have Sarcoid that hit my lungs when I was 40 and have multiple pneumonia, chronic bronchitis, asthma, lots of shortness of breath and low o2 at times. I'm using a bi-pap for obstructive sleep apnea and other sleep disorders, slight automatic neuropathy, forget to breath during the day at times, and ????

This new diagnosis was a surprise. So, I'm researching, asking questions so I know with what I'm dealing.

Doc referred me to pulmonary rehab, wait list due to lots of covid patients. Nebulizer with albuteral. I used it first time yesterday and had med reaction for hours.. I spoke with nurse, then doc called and switched me to levelbuteral, I think. And saline. How does the saline work in nebulizer? Add to med? Does it extend the moist treatment and help loosen phlegm?

Also, added an oscillary positive expiratory device??? Said it's a bit messy getting more junk out of lungs. I coughed up brown/green stuff yesterday. Nothing now since not using nebulizer until get new med Tuesday! Yuck.

Taking 5 days 20 MG prednisone, 1x daily Breo inhaler.

Referred to immunology as I have frequent infections…sinus that required surgery last year with infection non-responsive to any antibiotic, even in nasal spray. I use xylytol nasal spray 1x daily. Allergic to all others.

Testing immunoglobulin levels and expect to begin IVIG Infusions. Had years ago for misdiagnosed MG, but helped a lot.

Shortness of breath is at times very bothersome. I love pool therapy and do that in 94 degree water 2x daily w/pt. Love it!!!!

Walk with walker when strong enough but not lately.

I'm feeling some concern and want more info. Need to understand it all. So, any help and info is appreciated.

Worn out writing this. Headed to bed soon…be well and be blessed.
Elizabeth

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@ess77

@sueinmn, @gbippy , @alecia52, @colleenyoung, and all…
Well, Goody. I saw my Mayo pulmonologist last week. He diagnosed brachectasis, a new one for me. I have Sarcoid that hit my lungs when I was 40 and have multiple pneumonia, chronic bronchitis, asthma, lots of shortness of breath and low o2 at times. I'm using a bi-pap for obstructive sleep apnea and other sleep disorders, slight automatic neuropathy, forget to breath during the day at times, and ????

This new diagnosis was a surprise. So, I'm researching, asking questions so I know with what I'm dealing.

Doc referred me to pulmonary rehab, wait list due to lots of covid patients. Nebulizer with albuteral. I used it first time yesterday and had med reaction for hours.. I spoke with nurse, then doc called and switched me to levelbuteral, I think. And saline. How does the saline work in nebulizer? Add to med? Does it extend the moist treatment and help loosen phlegm?

Also, added an oscillary positive expiratory device??? Said it's a bit messy getting more junk out of lungs. I coughed up brown/green stuff yesterday. Nothing now since not using nebulizer until get new med Tuesday! Yuck.

Taking 5 days 20 MG prednisone, 1x daily Breo inhaler.

Referred to immunology as I have frequent infections…sinus that required surgery last year with infection non-responsive to any antibiotic, even in nasal spray. I use xylytol nasal spray 1x daily. Allergic to all others.

Testing immunoglobulin levels and expect to begin IVIG Infusions. Had years ago for misdiagnosed MG, but helped a lot.

Shortness of breath is at times very bothersome. I love pool therapy and do that in 94 degree water 2x daily w/pt. Love it!!!!

Walk with walker when strong enough but not lately.

I'm feeling some concern and want more info. Need to understand it all. So, any help and info is appreciated.

Worn out writing this. Headed to bed soon…be well and be blessed.
Elizabeth

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Hi Elizabeth –
– we currently have a lot of people with bronchiectasis or MAC – I don't know why, every so often it just happens that way. Pretty much EVERY newly diagnosed person has similar questions and concerns – here I hope are a few helpful answers.

All that said, do we know what causes bronchiectasis? Not exactly – but we do know some things that can contribute to people developing it – chronic asthma, chronic bronchitis, frequent bouts of pneumonia, SOME inflammatory autoimmune disorders…

Is it progressive? Generally – taking good care of your lungs and general health can really slow it down. According to my doc, bronchiectasis is generally a disease you live with & seldom something you die from. My Mom had it for many years, but ultimately died of a totally unrelated cause.

What does the saline neb do? Use it second, after the neb to open your airways. The saline will probably irritate your lungs, making you cough more and more deeply to get the mucus out. Saline has also been shown to tamp down on the growth of bacteria in your lungs. Feel free to use the little magnifying glass to search for 7% saline for lots of info.

So, go ahead and read all about it. I suggest sticking to Connect, NTMir.org and National Jewish Health resources for the latest and most accurate info. Here is a quick starting place from the American Lung Association: https://www.lung.org/lung-health-diseases/lung-disease-lookup/bronchiectasis/questions-to-ask-your-doctor
See you on Connect – ask all the questions you would like. It will help our more shy members as well.
Sue

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@raney

I am doing levalbuterol and then 7% NaCL then budesonide. So was wondering why you did that 1st.
Also teh budesonide caused thrush. I have been treating for over a month now and still have thrush! 1st was clotrimazole Lozenge for 3 weeks and now nystatin oral suspension. I am also rinsing and gargling with salt water and apple cider vinegar . Copious amounts of mucus and sputum from lungs and chronic sinusitis. I have tried 3 different prescription nasal sprays. Each made breathing more difficult. I am doing saline nasal rinses, but have to do it every day and sometimes 2 X day.

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@raney… I've had thrush frequently and use a tongue scraper several times a day. I've found that taking Candida Cleanse regularly has eliminated all the opportunistic infections (as shown in bronchoscopy results). It would not hurt to try these techniques if antibiotics and chemicals are not working. There are also new nasal rinse machines that may reach your problem areas better than squirt bottles. Good luck.

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@egayle187

@raney… I've had thrush frequently and use a tongue scraper several times a day. I've found that taking Candida Cleanse regularly has eliminated all the opportunistic infections (as shown in bronchoscopy results). It would not hurt to try these techniques if antibiotics and chemicals are not working. There are also new nasal rinse machines that may reach your problem areas better than squirt bottles. Good luck.

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thank you for the info. I will check into some of the other methods of nasal rinsing.
I looked at the Candida Cleanse diet and I pretty much the things mentioned on it several months ago (White flower, deserts, gluten, lactose, cheese..). When you say you take Candida Cleanse are to you mean some type of supplement or the diet?

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@raney

thank you for the info. I will check into some of the other methods of nasal rinsing.
I looked at the Candida Cleanse diet and I pretty much the things mentioned on it several months ago (White flower, deserts, gluten, lactose, cheese..). When you say you take Candida Cleanse are to you mean some type of supplement or the diet?

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@raney… Yes, the "Candida Cleanse " is a supplement. The one I use now is made by NOW called Candida Support, though the first one I used was called "Cleanse".

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I was just told today after having thought I had severe asthma. Starting a saline solution in the neublizer, antibiotic, and refer to pulomanary rehab??? The journey begins

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@rickden

I was just told today after having thought I had severe asthma. Starting a saline solution in the neublizer, antibiotic, and refer to pulomanary rehab??? The journey begins

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Welcome to our group. This sounds a lot like me 4 years ago – if this is new to you, you are probably feeling overwhelmed or a bit anxious.
Mayo Connect is a great place to get answers, or just to chat with people in your situation. Can you tell us about the beginning of your journey, like what led to the diagnosis? Have you been diagnosed with a specific infection? What diagnostic tool was used to determine you have bronchiectasis (CT, x-ray, bronchoscopy)?

Please feel free to ask questions, I have been where you are!
Sue

REPLY
@sueinmn

Welcome to our group. This sounds a lot like me 4 years ago – if this is new to you, you are probably feeling overwhelmed or a bit anxious.
Mayo Connect is a great place to get answers, or just to chat with people in your situation. Can you tell us about the beginning of your journey, like what led to the diagnosis? Have you been diagnosed with a specific infection? What diagnostic tool was used to determine you have bronchiectasis (CT, x-ray, bronchoscopy)?

Please feel free to ask questions, I have been where you are!
Sue

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Yes Ct and bronscopy, blood test. Started in 2010 said it was severe asthma, then progressed to today. Several bouts of pneumonia . Constant coughing and thick mucus. Glad I found this site

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@rickden

Yes Ct and bronscopy, blood test. Started in 2010 said it was severe asthma, then progressed to today. Several bouts of pneumonia . Constant coughing and thick mucus. Glad I found this site

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Oh, you do sound like me! What infection has been diagnosed?
Sue

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In reply to @rickden "Aspergillus" + (show)
@rickden

Aspergillus

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Do you know if they sent cultures for MAC? Those take weeks to come back, but it is often the cause of long term symptoms.
Sue

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