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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Brenda R. | @brigby | Apr 1, 2019
In reply to @pfists "@brigby I too had mycobacterium Abcessus....but by the grace of God it is gone without antibiotics...." + (show)
@pfists

@brigby
I too had mycobacterium Abcessus....but by the grace of God it is gone without antibiotics. To my understanding its a fast growing one which is treated more aggressivly with maybe Iv's at first and longer treatment.
I had really bad sinus problems then upon a sinus scan we decided surgery was needed. Not sure if this is an option for you if you have an active infection with myco Abcessus in the sinus cavity sinus surgery may not be an option.
But the surgery was the best thing ever I don't have sinus problems anymore. The sinus canal was made larger to help with any drainage. My sinus area was completely blocked off before surgery. I could not smell anything for years prior. Now I can smell things again.
Be careful of the water you use in the sinus area to my understanding even distilled water can have mac. Hope this info helps and you and your Drs find a successful course of action.
Shari

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@pfists how long ago were you diagnosed with m. Abscessus, and how long have you tested negative?

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 1, 2019
In reply to @tdrell "@windwalkerTerri...good report from NJH in January...then 5 days after return....bronchitis just like last year...so good bye..." + (show)
@tdrell

@windwalkerTerri...good report from NJH in January...then 5 days after return....bronchitis just like last year...so good bye to February...started weekly allergy shots ( dust and mold) last July...so maybe that’s why I had only one round of bronchitis this year vs last year having 3!thanks for asking😀@tdrell terri

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@tdrell Sounds like you are on the up and up!

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Brenda R. | @brigby | Apr 1, 2019
In reply to @windwalker "@brigby Geeze! That doesn't sound good that you are getting infected with multiple bacteriums. Has your..." + (show)
@windwalker

@brigby Geeze! That doesn't sound good that you are getting infected with multiple bacteriums. Has your dr mentioned you being immunodeficient? There is treatment for that. I was diagnosed with mild bronchiectasis many yrs ago and remain in that stage now. I have COPD that is diagnosed in the severe range (although I do not feel that it is severe). Question, what is AFB?

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AFB is test for Acid Fast Bacilli. Highly accurate test for TB or NTM.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 1, 2019
In reply to @lnduh66 "Newly diagnosed and waiting for results from bronchoscopy 6 weeks ago. On average, how long does..." + (show)
@lnduh66

Newly diagnosed and waiting for results from bronchoscopy 6 weeks ago. On average, how long does it take for results? Not coughing much but becoming short of breath more often. Becoming more aware of my surroundings and staying away from sick people, then my husband comes down with a terrible cold. What a challenge. Thanks!

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@induh66, It usually takes 6-8 weeks to grow mac. So, your results should be coming in soon. Keep me posted.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 1, 2019
In reply to @brigby "Thanks again for your concern and quick response. I’m not familiar with what a “spacer” is?..." + (show)
@brigby

Thanks again for your concern and quick response. I’m not familiar with what a “spacer” is?

I currently use a nebulizer daily and recently increased the saline from 3% to 7%. I had handfuls of brown sputum when diagnosed, now I have to work very hard, with vest, postural drainage and huff cough simultaneously to get even little bits of sputum out. I have thoracic pain all the time, and intermittent chest pain, but only in small, specific spots. No night sweats, chills, or those blasted muscle aches since my most recent lung infection (HIB) in January.

I add both the Budesonide and the Gentamicin to distilled H2O in my Navage. After years of using Neti pot, and WaterPik with a rubber tip, I feel the Navage delivers the meds better than anything. You kind of get a little mini sinus endoscopy with each treatment!

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@brigby, For now, you should avoid gardening and yard work altogether. You would not believe the things you can pick up in the way of molds and pathogenic bacterias from plants, leaves, and soil. Also, avoid swimming in anything. No pools, no hot tubs, rivers or lakes. It sounds like you are having immunodeficient issues. Stay out of old houses that may have mold and especially hospitals. I don't mean to scare you, but a red flag goes up when I read that you have multiple infectious things.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 1, 2019
In reply to @pfists "@windwalker888 Terri just checking in case it was something open on MAC. Thanks for all you..." + (show)
@pfists

@windwalker888
Terri just checking in case it was something open on MAC. Thanks for all you do for this board...I really appreciate all the time and effort you put in here!!!
Let me know when we get closer to that date and Hopfully it works out.
Shari

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@pfist Ok, Shari, I will.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 1, 2019
In reply to @danielad "@windwalker -- Thanks Terri; I will do that. By the way, how often would you need..." + (show)
@danielad

@windwalker -- Thanks Terri; I will do that. By the way, how often would you need a sputum sample? Only once, or more? Thanks.
--Dee

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@danielad You should have a sputem test every six months at least.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Apr 1, 2019
In reply to @tdrell "@windwalkerTerri...good report from NJH in January...then 5 days after return....bronchitis just like last year...so good bye..." + (show)
@tdrell

@windwalkerTerri...good report from NJH in January...then 5 days after return....bronchitis just like last year...so good bye to February...started weekly allergy shots ( dust and mold) last July...so maybe that’s why I had only one round of bronchitis this year vs last year having 3!thanks for asking😀@tdrell terri

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@tdrell That happened to you the last time you traveled to Denver (last yr). Are you getting bronchiestis from the air on the airplanes?

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Brenda R. | @brigby | Apr 1, 2019
In reply to @windwalker "@brigby, For now, you should avoid gardening and yard work altogether. You would not believe the..." + (show)
@windwalker

@brigby, For now, you should avoid gardening and yard work altogether. You would not believe the things you can pick up in the way of molds and pathogenic bacterias from plants, leaves, and soil. Also, avoid swimming in anything. No pools, no hot tubs, rivers or lakes. It sounds like you are having immunodeficient issues. Stay out of old houses that may have mold and especially hospitals. I don't mean to scare you, but a red flag goes up when I read that you have multiple infectious things.

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@windwalker888 Hi Teri, thanks, and you’re not shocking me here, LOL. I guess that’s what makes me a little nervous: I’m able to function at a fairly normal level, but these lab results keep coming back suspect. I’m sure I’ll hear from my ID doc at Stanford soon...he errors on the side of caution.

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janovr | @janovr | Apr 1, 2019
In reply to @windwalker "@brigby Hi. I was in the same shape as you back in 2013. I couldn't walk..." + (show)
@windwalker

@brigby Hi. I was in the same shape as you back in 2013. I couldn't walk from one room to the next without sitting down to catch my breath. For yrs I couldn't go to a mall, except to one store only. Even that would wipe me out. Today, I can walk all I want, and rode my bike two days ago 8 miles! After being sick for so many yrs, I never thought I would improve to the point that I have. I actually improved my 6 min walk at my last dr visit. My dr was astounded. Never give up fighting to better your health, it is possible to improve.

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@brigby Yhank you for your post!
So encouraging!

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