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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@windwalker

@barbb, Hello. Here is some info for you in a nutshell. MAC is short for mycobacterium avium complex a.k.a. NTM (non-tuberculosis mycobacterium) mac is a cousin to T.B. only it is not contagious like t.b. People with bronchiectasis are more prone to developing an infection from this bacteria than people without .That is due to the structural changes in the lung tissue that bronchiectasis causes and it traps bacteria. There is a lot of info in our older posts. You can go to the Discussion Board on the group's homepage and scroll through the topics. If you go to the magnifying glass at the top of this page and click on it, a box will appear. Type in @kateman and that member's posts will pop up. She has p Please let me know if you have trouble navigating this site.osted lots of helpful info. Same with my name @windwalker.

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@windwalker @barbb.... Isn't it @katemn? Nan

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HAVE YOU had your immunoglobulins checked? After MAC and bronchiectasis diagnoses, I had immunoglobulins checked and found out that my IgG (gamma globulin) was low. Two years ago I started infusing with IgG weekly subcutaneous (in my fat, not IVIG in vein) which brings my levels up to the middle of the reference range. Ive had one very mild case of flu in last two years-- and my lung CT scans looks better.

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@gej53

I received my nebulizer through a local DME (durable medical equipment) company. I contacted them and they checked on the insurance company coverage and mailed it to my home. My doctor had to send them a script for it also. 🙂

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Thank you for the info!

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@joanng

I am 52 yrs old with an autoimmune disease and recently been diagnosed with bronchiectasis and pseudomonas. I was on 3 rounds of oral antibiotics. Then my pulmonologist put me on gentomyacin in the nebulizer with albuterol first. Advair twice a day and prescription Flonase twice a day. Along with mucinex twice daily. I used the gentomycin twice daily for 28 days then prednisone for a week following. I felt slightly better but not 100%. My chest is tight my upper back hurts, when I lay on my side I feel like my lungs are being crushed. I was recently tested for CF and have one gene but doc says don’t worry you don’t have CF. I’m extremely tired and don’t feel well all the time. In March I started working from home due to COVID and my doctor suggested it was a good idea and recently told I can go back into the office. I feel like I can’t make it through the day as I’m extremely tired.
Questions
Is it normal to feel like you can’t work a full day? I was normally working 10 hrs a day and now feeling like I can’t make it to 6 hours.
Has anyone had to take a leave of absence?
Has anyone had good results from gentomycin? I ask because I sent a new sputum culture in as I think the pseudo is not gone.
Does the pain in your chest when breathing ever go away?
Does anyone else have upper back issues due to the lung issues?
Do you ever not feel so tired?
How long does it take to rid your body of pseudo?
My apologies for so many questions but I am new to this and need answers. My dr says you can’t get rid of the bronchiectasis but learn to manage it. I’m not feeling managed or normal.
Any feedback is greatly appreciated.

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I was reading your comment and most of your questions I would ask myself I have Mac myself I’m new to all this I wish I knew more about it I only found out few weeks ago if there’s anything you can tell me that would be helpful to me I would appreciate it thanks I’m currently on an inhaler for the MAC thanks 😊

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@pfists

@tdrell
Yes it's a shot for severe asthma.
Called eosinophil asthma.
The shot works to eliminate eosinophils that are causing the mucus. I've been on it for a couple of months now. Still deciding between the risk and benefit of a drug modifying my immune system.
Shari

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Hi Shari,
I am new to this group. I am reading your note, and interested to know how are you doing with the shot you mentioned.
Hope you are doing well.

Thanks!
Ling

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Jumping on this thread but might not be optimal place to ask. Trying to understand if I have Bronchiectasis. I've had 2 CT scans. Report neither mentions Bronchiectasis, but there are a number of mentions of Tree-in-Bud opacities, reticulonodular opacities, nodules, and cavitary lesions (which I understand are the basis of Cavitary MAC diagnosis). My pulmonologist never used the "B" term either when discussing my bronchoscopy results. I have another appt. with my pulmonologist right after New Year and will certainly ask for clarification, but in the meantime I've been trying to determine as I can see "B" would be a significant additional issue. From "googling" the terms in my CT scan I mention above, I don't find anything that says definitely these finding = "B". Can anyone shed light on this for me?

FYI, I have no symptoms other than a persistent cough that continued to diminish in frequency over about 4 months since its first abrupt onset (initially though it was a bad code/flu as it came on in a day or so). Cough was rare (once a day, often going several days w/o coughing at all,; just a few light coughs, no sputum even when I tried). In the last couple of weeks, coughing a little more and deeper sound, still little or no sputum even with my novice attempts at huff coughing technique. (How can you tell if you're getting sputum from lungs vs post-nasal drip when you feel something at back of through after coughing?). Wondering if recent increase is due to colder air temps?

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@mch

Jumping on this thread but might not be optimal place to ask. Trying to understand if I have Bronchiectasis. I've had 2 CT scans. Report neither mentions Bronchiectasis, but there are a number of mentions of Tree-in-Bud opacities, reticulonodular opacities, nodules, and cavitary lesions (which I understand are the basis of Cavitary MAC diagnosis). My pulmonologist never used the "B" term either when discussing my bronchoscopy results. I have another appt. with my pulmonologist right after New Year and will certainly ask for clarification, but in the meantime I've been trying to determine as I can see "B" would be a significant additional issue. From "googling" the terms in my CT scan I mention above, I don't find anything that says definitely these finding = "B". Can anyone shed light on this for me?

FYI, I have no symptoms other than a persistent cough that continued to diminish in frequency over about 4 months since its first abrupt onset (initially though it was a bad code/flu as it came on in a day or so). Cough was rare (once a day, often going several days w/o coughing at all,; just a few light coughs, no sputum even when I tried). In the last couple of weeks, coughing a little more and deeper sound, still little or no sputum even with my novice attempts at huff coughing technique. (How can you tell if you're getting sputum from lungs vs post-nasal drip when you feel something at back of through after coughing?). Wondering if recent increase is due to colder air temps?

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Hello Mary Carol, and welcome to the MAC & Bronchiectasis group. While we are not doctors and cannot offer you a diagnosis, this is the right place to ask the question.

CT results may or may not mention bronchiectasis depending on the interpreting radiologist and what they were told in the doctor's order. It is possible to have cavitary MAC without bronchiectasis, especially if you have had frequent pneumonia, long term asthma, COPD or other lung problems.

As for sputum production, we are all very different, and weather, allergies and general health can vary the production. It might be helpful to ask your doc for a consult with a Respiratory Therapist at your next appointment. There are many strategies besides huff coughing to get the mucus out. The advantage of doing it is to limit the breeding ground for bacteria that the lungs provide so nicely - warm, dark & moist.

Was a sputum culture collected from you already to confirm your diagnosis?
Sue

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@sueinmn

Hello Mary Carol, and welcome to the MAC & Bronchiectasis group. While we are not doctors and cannot offer you a diagnosis, this is the right place to ask the question.

CT results may or may not mention bronchiectasis depending on the interpreting radiologist and what they were told in the doctor's order. It is possible to have cavitary MAC without bronchiectasis, especially if you have had frequent pneumonia, long term asthma, COPD or other lung problems.

As for sputum production, we are all very different, and weather, allergies and general health can vary the production. It might be helpful to ask your doc for a consult with a Respiratory Therapist at your next appointment. There are many strategies besides huff coughing to get the mucus out. The advantage of doing it is to limit the breeding ground for bacteria that the lungs provide so nicely - warm, dark & moist.

Was a sputum culture collected from you already to confirm your diagnosis?
Sue

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3 days of sample collected. Negative, however VERY little in each sample. I told my pulmonologist I was not confident of those results so he ordered bronchoscopy with lavage. That came back positive for MAC and asperillis (sp).

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@mch

3 days of sample collected. Negative, however VERY little in each sample. I told my pulmonologist I was not confident of those results so he ordered bronchoscopy with lavage. That came back positive for MAC and asperillis (sp).

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Sue - adding to my last….other than recent diagnosis of mild asthma based of breathing test ordered by pulmonologist prior to first appt, 8’ve never had any lung issues/illnesses other than the rare headcold (and those mostly sinus and not chest symptoms). And the asthma surprised me as I’ve never had any symptoms even though I’ve been physically active all my life.

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@mch

Jumping on this thread but might not be optimal place to ask. Trying to understand if I have Bronchiectasis. I've had 2 CT scans. Report neither mentions Bronchiectasis, but there are a number of mentions of Tree-in-Bud opacities, reticulonodular opacities, nodules, and cavitary lesions (which I understand are the basis of Cavitary MAC diagnosis). My pulmonologist never used the "B" term either when discussing my bronchoscopy results. I have another appt. with my pulmonologist right after New Year and will certainly ask for clarification, but in the meantime I've been trying to determine as I can see "B" would be a significant additional issue. From "googling" the terms in my CT scan I mention above, I don't find anything that says definitely these finding = "B". Can anyone shed light on this for me?

FYI, I have no symptoms other than a persistent cough that continued to diminish in frequency over about 4 months since its first abrupt onset (initially though it was a bad code/flu as it came on in a day or so). Cough was rare (once a day, often going several days w/o coughing at all,; just a few light coughs, no sputum even when I tried). In the last couple of weeks, coughing a little more and deeper sound, still little or no sputum even with my novice attempts at huff coughing technique. (How can you tell if you're getting sputum from lungs vs post-nasal drip when you feel something at back of through after coughing?). Wondering if recent increase is due to colder air temps?

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Hi Mary Carol,

Lots of good questions!

Believe it or not, diagnosing bronchiectasis is not so black-and-white. There are a lot of criteria. That’s why whenever possible it’s best to go to a bronchiectasis center such as the Mayo Clinic, UT Tyler, National Jewish or NYU Langone.

Currently there are 19 centers that participate with the Bronchiectasis Research Registry. If you want to share where you live I can let you know which center is closest to you.

Best,
Linda Esposito

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