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.

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

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 6, 2018
In reply to @auntnanny "jweisser.…… I feel one of the main problems most of us have experienced is that we..." + (show)
@auntnanny

jweisser.…… I feel one of the main problems most of us have experienced is that we did not have a doctor who knew any more than we did. I saw 7 specialists locally and none actually knew anything or were able to help in any way. These were allergists, pulmonologists, cardiologists, internal medicine, ENT, …... I kept trying all of it. Finally, out of desperation I made a call to Mayo's -- they took me right away. Diagnosed within 2 hours...… I have medicare and blue cross..... I was never charged a dime for anything. It was a 10-hour drive but ---- the best thing I ever did. I had lost soooo much weight and everyone (including myself) thought I was dying. I couldn't eat and I could barely walk through the house. And, the coughing was so severe I was never able to sleep. Sat up in bed for two years. I could go on and on...… just saying, whatever it takes, get to Mayo's. It's a remarkable place. Until you've been, you cannot imagine the kindness and help you will receive. My doctor is Teng Moua in Rochester but there are many others with stellar reputations. They need a cat scan and a sputum test to get you on the right track. I do hope you just decide to make a trip to one of their facilities. It will change your life.

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@auntnanny I couldn't have said it better. I feel the same way.

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onana | @onana | Oct 21, 2018

I'm 5 weeks into NTM treatment with the "big 3" and everything was going well (body adjusting to the meds, increased energy, reduced cough, etc.) until yesterday - Friday - at 5 minutes after 5 pm. I felt a sudden need to cough and coughed up blood. I couldn't reach my doctors because it's the weekend and I knew I hadn't coughed up enough blood to warrant going to ER. The experience put me in a mild state of panic. I managed to calm myself down and the bleeding didn't continue but I want to understand it. Has anyone else coughed up blood while on the treatment? If so, what was the explanation?

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1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 28, 2018
In reply to @onana "I'm 5 weeks into NTM treatment with the "big 3" and everything was going well (body..." + (show)
@onana

I'm 5 weeks into NTM treatment with the "big 3" and everything was going well (body adjusting to the meds, increased energy, reduced cough, etc.) until yesterday - Friday - at 5 minutes after 5 pm. I felt a sudden need to cough and coughed up blood. I couldn't reach my doctors because it's the weekend and I knew I hadn't coughed up enough blood to warrant going to ER. The experience put me in a mild state of panic. I managed to calm myself down and the bleeding didn't continue but I want to understand it. Has anyone else coughed up blood while on the treatment? If so, what was the explanation?

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@onana Hi there. I just now found this post of yours. I missed it last week somehow. As you have probably read from some of these posts, us mac patients sometimes do experience coughing up blood. It sometimes will happen and usually resolves itself. But, sometimes medication will actually cause it. In that case you would need to be taken off of that medication. Have you reported this to your doctor?

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onana | @onana | Oct 28, 2018

Thanks for getting back to me. Yes, I reported it to my pulmonologist and to the ID doc. The pulmonologist didn't think it was anything to be alarmed about (unless I was coughing up blood repeatedly. That wasn't the case. It resolved itself in one day. I got a message to the ID doc but didn't get to speak with him. I know the two docs talk to each other. They did not call off the meds.

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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Oct 29, 2018
In reply to @onana "Thanks for getting back to me. Yes, I reported it to my pulmonologist and to the..." + (show)
@onana

Thanks for getting back to me. Yes, I reported it to my pulmonologist and to the ID doc. The pulmonologist didn't think it was anything to be alarmed about (unless I was coughing up blood repeatedly. That wasn't the case. It resolved itself in one day. I got a message to the ID doc but didn't get to speak with him. I know the two docs talk to each other. They did not call off the meds.

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@onana Good! I know that kind of thing can freak a person out; it did when it happened to me. How are you doing on the meds?

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onana | @onana | Oct 29, 2018

@windwalker I'm doing ok. The first couple of weeks I had stomach cramps and frequent trips to the potty (felt I couldn't leave the house for at least 4 hours after the dose). Now things are more comfortable. Seems my body has pretty much adjusted, although I still want a potty nearby after I take the meds. I feel more able to manage the side effects. Appetite is holding but diminished, so I try to eat high calorie but nutritious food. Phlegm is noticeably reduced, so the nebulizer saline doesn't bring up much at all but assures me that the meds are working. I was pretty excited about the good results until I coughed up blood. That incident really discouraged me, but I'm ok now.

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kpost2 | @kpost2 | Mar 25, 2019

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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5 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 25, 2019
In reply to @kpost2 "I have been diagnosed with Bronchiectasis from my Pulmonologist. I had a couple Bronchoscopies done. I..." + (show)
@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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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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2 replies
Merry, Alumni Mentor | @merpreb | Mar 25, 2019

@kpost2- Welcome to Mayo Connect. I'm sorry that you are having troubles with your cough and mucus build up. Are your IV's to fight infection?
I'm afraid that your symptoms are pretty usual for Bronchiectasis. Because you have permanent damage to your bronchi you will need to be very diligent about exposing your self to anyone who is ill. I don't know if this helps at all.
https://bronchiectasisnewstoday.com/bronchiectasis-treatment/
https://www.medicalnewstoday.com/articles/185768.php
https://www.nhsinform.scot/illnesses-and-conditions/lungs-and-airways/bronchiectasis
@windwalker @tdrell @irene5 @kjellis- Have you found anything new?

REPLY
pfists | @pfists | Mar 25, 2019
In reply to @kpost2 "I have been diagnosed with Bronchiectasis from my Pulmonologist. I had a couple Bronchoscopies done. I..." + (show)
@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?

Jump to this post

@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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