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.

@kpost2.....the web site Merry shared on bronchiectasis is excellent...
Shari...what is a nucala shot for Asthma? Tdrell

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@tdrell

@kpost2.....the web site Merry shared on bronchiectasis is excellent...
Shari...what is a nucala shot for Asthma? Tdrell

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@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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@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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@pfists- Good morning. This must be very difficult to live with. I have never heard of eosinophil asthma. Do you know what the cause of yours is? Do you find that with the increasing heat on the planet and more and more fungi and parasites that you are experiencing even more mucus? Have you found the shot helps?
https://www.mayoclinic.org/symptoms/eosinophilia/basics/causes/sym-20050752

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@colleenyoung

Hi @kpost2, welcome to Connect. You'll notice that I have moved your message to an existing discussion about bronchiectasis in the MAC & Bronchiectasis group. If you click VIEW & REPLY in the email notification, you can scroll back through the past and recent posts.

I also invite you to explore all the discussions in the group. There is a wealth of information here: https://connect.mayoclinic.org/group/mac-bronchiectasis/tab/discussions/

For example, this discussion:
- Long-term Antibiotics for Bronchiectasis & MAC https://connect.mayoclinic.org/discussion/bronchiectasis-mac-antibiotics/
- Are Nebulized saline and Aerobika beneficial? https://connect.mayoclinic.org/discussion/are-nebulized-saline-and-aerobika-beneficial/

One thing you'll quickly notice is that you're not alone. I'd like to introduce to a few members like @windwalker @tdrell @irene5 @kjellis and others who understand your feeling like a lab rat and searching for treatment/management options in support of or as an alternate to long-term antibiotics.

KPost, do you use a nebulizer?

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I used a nebulizer before and it seemed to mess with my eyes. My eyes had a hard time focusing, so I was told to stop using it.

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@pfists

@kpost2
Welcome to the group.
I too am getting the nucala asthma shot...do you feel like the injection your getting is helping with reducing phlehm production?
I am also prescribed the Vest to help with phlehm that does help some.
Are you looking into allergies that would cause more phlehm like dairy dust mold in the house. Just a some things I have to be watchful of.
Hope you get some answers to reducing the phlegm production.
Shari

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The injection seems to help a little bit. I have allergies to every type of grass and trees known to man. My food allergies are tomatoes, and eggs. I just feel like a lab rat and the Doctors don't seem to help much. I get my blood drawn all the time. My IGG levels are always dangerously low.

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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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@pfists ...thanks for explaining eosinophilia asthma and it’s treatment...most interesting....how were you diagnosed and where? Tdrell

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@kpost2

I have been diagnosed with Bronchiectasis from my Pulmonologist. I had a couple Bronchoscopies done.
I wear a shaker vest 2 times a day. I also get an Asthma shot every four weeks. I also get I.V. treatments
for my Bronchiectasis every four weeks also. Been doing this for about two years now and still have a continued
cough with mucus. I feel like a lab rat when ever I go to the doctors office. Also have been on lots and lots of Antibiotics.
Is there any other thing I can try?

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What kind of I.V. Treatments do you get? I have Bronchiectasis also, plus Mac and I’m on the 3 oral meds plus nebulizer and vest. This is my second go round as I was originally diagnosed at NJ in 03.

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@kpost2

I have been diagnosed with Bronchiectasis from my Pulmonologist. I had a couple Bronchoscopies done.
I wear a shaker vest 2 times a day. I also get an Asthma shot every four weeks. I also get I.V. treatments
for my Bronchiectasis every four weeks also. Been doing this for about two years now and still have a continued
cough with mucus. I feel like a lab rat when ever I go to the doctors office. Also have been on lots and lots of Antibiotics.
Is there any other thing I can try?

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@kpost Hello and welcome to our group. I am curious as to why you are on I.V. treatments for bronchiectasis? Do you have a severe mac or pseodomonas infection? Or is the damage from bronchiectasis in a severe stage? Are you nebulizing saline? I hope you don't mind my questions, I am just trying to get a better idea of your health & treatment situation. I had a constant cough with terrible phlegm production for 10 yrs. In 2016 I was put on inhaled tobramycin and that cleared it all up. I am on the tobramycin every other month to this day and still doing good.

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@tdrell

@pfists ...thanks for explaining eosinophilia asthma and it’s treatment...most interesting....how were you diagnosed and where? Tdrell

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@tdrell
My last bronchoscope showed a really high eosinophil count. The pathologist called my pulmonologist and told him it was one of the highest he ever seen. So not really not good to impress the pathologist in not such a good way.
I have lots of allergies to dust mold pollen. There are a number of injections for extreme asthma I'm just not sure I want to mess with my immune system with the injectables.
Shari

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@kpost2

I used a nebulizer before and it seemed to mess with my eyes. My eyes had a hard time focusing, so I was told to stop using it.

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@kpost2 Hi. What were you nebulizing that messed with your eyes?

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