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.

@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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