Just Diagnosed with GERD, Bronchiectasis and MAC

Posted by nora49 @nora49, Aug 28 8:47am

Hello. I was just diagnosed with GERD, broncheastis, and MAC. I have just begun antibiotic treatment: 3 antibiotics, 3 days a week. This is all new to me. I've never had a serious medical issue before this, and I am glad I found this group.

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

@nora49 Welcome to our Mayo Connect community. Here you will find a very large and knowledgeable group who have many experiences to share regarding the treatment and management of MAC, GERD and bronchiectasis.
While you are right, and our conditions can be serious, you will find that you can live a full and happy life…I know things may feel a bit scary or overwhelming just now, but we are here to support you.
You can find the answer to almost any question by using the search box at the top of the screen. Be as specific as you can to find the best answers.
Also, many of our discussions have been going on for a long time, there may be hundreds of posts and members come & go. If you want to see the most recent posts, click the drop down box right below the initial post & change the order to "newest to oldest."
Finally, feel free to ask any questions that come to mind – I had hundreds when I was diagnosed!
Can you tell me a little about what led you to seek treatment? Are you seeing a pulmonologist now?
Sue

REPLY
@sueinmn

@nora49 Welcome to our Mayo Connect community. Here you will find a very large and knowledgeable group who have many experiences to share regarding the treatment and management of MAC, GERD and bronchiectasis.
While you are right, and our conditions can be serious, you will find that you can live a full and happy life…I know things may feel a bit scary or overwhelming just now, but we are here to support you.
You can find the answer to almost any question by using the search box at the top of the screen. Be as specific as you can to find the best answers.
Also, many of our discussions have been going on for a long time, there may be hundreds of posts and members come & go. If you want to see the most recent posts, click the drop down box right below the initial post & change the order to "newest to oldest."
Finally, feel free to ask any questions that come to mind – I had hundreds when I was diagnosed!
Can you tell me a little about what led you to seek treatment? Are you seeing a pulmonologist now?
Sue

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I've had a cough for a long time. My allergist told me it was asthma. My husband kept on bugging me to get another opinion. Just to get him off my back, I went to a pulmonologist. I passed the breathing test easily, but the chest x-ray was suspicious. The CRT indicated broncheastasis,and the bronchoscopy confirmed that as well as MAC. I have just started the antibiotics course of treatment.

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@nora49

I've had a cough for a long time. My allergist told me it was asthma. My husband kept on bugging me to get another opinion. Just to get him off my back, I went to a pulmonologist. I passed the breathing test easily, but the chest x-ray was suspicious. The CRT indicated broncheastasis,and the bronchoscopy confirmed that as well as MAC. I have just started the antibiotics course of treatment.

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Did the pulmonologist prescribe any airway clearance measures to help get the mucus out? This is very important because it will also help knock down the amount of bacteria by giving it fewer places to breed & to hide.
Sue

REPLY
@sueinmn

Did the pulmonologist prescribe any airway clearance measures to help get the mucus out? This is very important because it will also help knock down the amount of bacteria by giving it fewer places to breed & to hide.
Sue

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Hi Sue, what do you mean by “airway clearance measures to help get the mucus out”? Is there to do beyond Symbicort type inhalers?
Thanks!
Jamie

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@jamieh

Hi Sue, what do you mean by “airway clearance measures to help get the mucus out”? Is there to do beyond Symbicort type inhalers?
Thanks!
Jamie

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Airway clearance is a process, beyond the inhaler, of actively breathing and/or coughing to get the mucus out of our lungs. Some people use 7% saline to thin the mucus, vibratory devices to loosen the mucus, or specific postures to drain it. Here is a good description to get you started: https://mylungsmylife.org/topics/group-1/how-to-clear-your-chest/airway-clearance-techniques/
Within this group, you can also search for airway clearance and find many helpful posts.
Will this get you started?

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@sueinmn

Did the pulmonologist prescribe any airway clearance measures to help get the mucus out? This is very important because it will also help knock down the amount of bacteria by giving it fewer places to breed & to hide.
Sue

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Yes, I use the flutter device, but I'm not sure it is very effective.

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@nora49

Yes, I use the flutter device, but I'm not sure it is very effective.

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I find the flutter device more useful if I use a bronchodilator to open the airways, followed by saline to loosen the mucus, some gentle exercise to get the mucus moving, then use the device.
Did you have a consult with a respiratory therapist or trained nurse to help learn airway clearance?
Sue

REPLY
@sueinmn

@nora49 Welcome to our Mayo Connect community. Here you will find a very large and knowledgeable group who have many experiences to share regarding the treatment and management of MAC, GERD and bronchiectasis.
While you are right, and our conditions can be serious, you will find that you can live a full and happy life…I know things may feel a bit scary or overwhelming just now, but we are here to support you.
You can find the answer to almost any question by using the search box at the top of the screen. Be as specific as you can to find the best answers.
Also, many of our discussions have been going on for a long time, there may be hundreds of posts and members come & go. If you want to see the most recent posts, click the drop down box right below the initial post & change the order to "newest to oldest."
Finally, feel free to ask any questions that come to mind – I had hundreds when I was diagnosed!
Can you tell me a little about what led you to seek treatment? Are you seeing a pulmonologist now?
Sue

Jump to this post

Do you need to do this if you have no symptoms?

REPLY
@masydnor

Do you need to do this if you have no symptoms?

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Hmm, that is an interesting question. Most of us arrived at Mayo Connect because we had symptoms, and if the pulmonologist had not directed it, our experienced members strongly suggested it.

When I was diagnosed, I had a cough, fever, Bronchiectasis, Pseudomonas & MAC as well us uncontrolled asthma and my pulmo told me I would need to do airway clearance for the rest of my life. First to help clear my lungs, then to keep them clear. During my last visit, over 2 years after nearly all my symptoms were gone, and with my asthma now well-controlled, my current pulmonologist again stressed airway clearance, with 7% saline nebs "as needed."

The answer will be different depending on whether you have been diagnosed with MAC or Pseudomonas or another infection.

Why? When one has bronchiectasis, lungs don't function efficiently to move mucus (which we all have – it keeps our lungs moist.) It gets stuck or pooled where it should not be, creating a warm, moist hiding place for bacteria to settle and grow. This is why we are more inclined to be infected by slow-growing bacteria like MAC. Other people just don't have a place for them to grow.

If you have Bronchiectasis without an infection, airway clearance without saline might be enough to keep you healthy. As to whether you need saline? If using a vibratory device & one or more coughing exercises you bring up any mucus and it is clear & not sticky, maybe not.

If you have an infection, even without symptoms or current antibiotic regimen, airway clearance, especially with saline, can help keep the infection from progressing.

Which category are you in?
Sue

REPLY

I was diagnosed 3 years ago with MAC and bronchiectasis . It was a finding on a CT scan for my heart. I have been getting CT scans every year. This year there was change to my CT scan. He wants to repeat the scan in Jan. And start medication at that time. I still have no symptoms at this time.

REPLY
@masydnor

I was diagnosed 3 years ago with MAC and bronchiectasis . It was a finding on a CT scan for my heart. I have been getting CT scans every year. This year there was change to my CT scan. He wants to repeat the scan in Jan. And start medication at that time. I still have no symptoms at this time.

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A CT scan alone is not sufficient information with which to begin treatment – the culture will show the type of MAC (there are several) and what antibiotics it is sensitive to.

Have they done a sputum culture yet? Recommended using airway clearance with saline to try to stop/slow the infection? Are you seeing a pulmonologist or ID doc experienced in treating MAC? MAC is still quite uncommon, so many do not have experience treating it.

Sorry for so many questions, but you might want to do a little studying before you commit to treatment with antibiotics.
Here is a link to a recent educational conference at the Medical University of South Carolina where "To treat or Not?" is discussed in the first session
Defining NTM lung disease, Patrick Flume, M.D.

Mycobacteria & the Environment, Susan Dorman, M.D.

Non-Pharmacologic Therapies, Wayne Barfield, RT & Christina Mingora, M.D.

Antibiotic Treatment of NTM Lung Disease, Patrick Flume, M.D.

Drug Toxicity and Monitoring, Wendy Bullington, PharmD

Emotional Wellness and Quality of Life While Living with NTM, Lillian Christon, PhD

What is in the Drug Pipeline? Susan Dorman, M.D.

Patient Advocacy, Sue Gray, RN

Panel Q&A

Patient Perspectives, Faculty Panel

I hope this information will help you.
Sue

REPLY

I will be getting the bronchoscope in January as well to determine type. I do see a pulmonologist that specializes in MAC. Up to this point he has not recommended any treatment, but now that there are changes to the scan he will be moving forward with treatment. No airway treatment has been discussed yet as I have to symptoms not a cough or anything.

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