1. < MAC & Bronchiectasis

Bronchiectasis what are the stages and symptoms

Posted by raney @raney, Oct 18, 2021

I was diagnosed with bronchiectasis about the time that Covid hit the US and the pulmonologist are overworked, so I have lots of unanswered questions. I also am taking Bisoprolol Fumarate 2.5 mg (a beta blocker) for heart issues. This is the 3rd cardiac med that has been prescribed in hopes of finding something that works with heart and does not interact with pulmonary meds.
Is there away to shorten the time of treatment?
1. Will I have to spend 3 hours 2 X a day for the rest of my life with nebulizer treatments, smart vest, gargles and nasal washes?
2. Is there anyway to shorten the time of nebulizer. (I have been prescribed (a) Levalbuterol which I can not use because it makes breathing more difficult (b) Sodium Chloride 7% (c) Budesonide all by nebulizer.
I use Aerobika and Smart Vest at intervals during nebulizer treatment.

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pal131 | @pal131 | Oct 21, 2021
In reply to @raney "Thank you. Yes, I also take Mucinex LA 2 times a day. Thank you for suggestion..." + (show)
@raney

Thank you. Yes, I also take Mucinex LA 2 times a day. Thank you for suggestion of clinic medication management specialist. MAI. Another story. It was seen on a sputum culture and areas in my lungs that doc suspected was MAI. Treatment? I changed PCP & pulmonologist about 6 months after the sputum spec and CT Scan when I saw on the summary from Pulmo to PCP that: "....I do not believe that this lady is a good candidate for long term antibiotic therapy." Neither of them had explained to me what MAI was or what the treatment was or possible other fungus in the lungs? I have a different PCP and a different Pulmo now and I have been to UNC Chapel Hill, NC' Bronchiectasis Clinic. The Pulmo at UNC Chapel Hill told me that I should have a local pulmo and I will go to Chapel Hill every 6 months.

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What does the LA after the Mucinex mean?

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1 reply
pal131 | @pal131 | Oct 21, 2021
In reply to @raney "Thank you, Kate, This lung disease is all new to me and I have so much..." + (show)
@raney

Thank you, Kate, This lung disease is all new to me and I have so much to learn. I do take Mucuinex 2 X day and use flutter device (Aeroika), Smart Vest, and nebulizer. I have not heard of NAC but I certainly will find out. Thank you for the link. One reason it takes me so long, (I think) is because there is SO MUCH thick mucus, and sometimes I use 2 ampules of 7% Saline to feel that I am half way "unclogged." I wish my doctors had listened to my complaints and diagnosed the problem before it got so bad. I didn't have a clue! I thought it was my heart and a bad respiratory infection for about the 1st two years and that was with a PCP only.

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Do you mix the 7% Saline with anything else? Does your Dr. prescribe this method of clearing your lungs?

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1 reply
alleycatkate | @alleycatkate | Oct 21, 2021
In reply to @raney "Thank you, Kate, This lung disease is all new to me and I have so much..." + (show)
@raney

Thank you, Kate, This lung disease is all new to me and I have so much to learn. I do take Mucuinex 2 X day and use flutter device (Aeroika), Smart Vest, and nebulizer. I have not heard of NAC but I certainly will find out. Thank you for the link. One reason it takes me so long, (I think) is because there is SO MUCH thick mucus, and sometimes I use 2 ampules of 7% Saline to feel that I am half way "unclogged." I wish my doctors had listened to my complaints and diagnosed the problem before it got so bad. I didn't have a clue! I thought it was my heart and a bad respiratory infection for about the 1st two years and that was with a PCP only.

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@raney Sorry that your PCP was not on top of your illness. One other thing to mention that some Dr's gloss over but seems to be important... If you have acid reflux, you should take care of it. Fluids can aspirate into your lungs. I hope you get your mucous under control. Are you comfortable with your Dr now?

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1 reply
Montsi | @montsi | Oct 21, 2021
In reply to @thumperguy "Raney, I’ve likely commented on this before, nonetheless I discarded use of the percussion vest several..." + (show)
@thumperguy

Raney, I’ve likely commented on this before, nonetheless I discarded use of the percussion vest several months ago having become convinced that it wasn’t contributing significantly to keeping symptoms at bay. My current regimen: 20 minute nebulized 7% saline session twice daily. The 7% seems to be controlling MAC as “advertised.” I’ve been “flare-up” free for nearly two years. Using the “nebbing” time to read diminishes the sense that the time is wasted. (Full disclosure) I’ve long been convinced that I have a “lighter” case of MAC than many others on this forum. For example, I’ve never had to routinely use antibiotics. Following a negative therapeutic reaction to antibiotic treatment of a flare up a couple of years ago I put them on the shelf and left ‘em there. Don

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Does your regimen include using albuterol soln or an other soln to open your airways prior to nebbing the saline? Do you use an oscillating OPEP Device to help move the phlegm? I have wondered about the safety of using albuterol long term.

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2 replies
raney | @raney | Oct 21, 2021
In reply to @alleycatkate "@raney Sorry that your PCP was not on top of your illness. One other thing to..." + (show)
@alleycatkate

@raney Sorry that your PCP was not on top of your illness. One other thing to mention that some Dr's gloss over but seems to be important... If you have acid reflux, you should take care of it. Fluids can aspirate into your lungs. I hope you get your mucous under control. Are you comfortable with your Dr now?

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I do have GERD and have been on Pantoprazole for 3 years. I have the HOB elevated 6" and not eating for at least 2 hours before going to bed.
My present pulmonologist. The jury is still out. I selected this practice because and a particular doc because he specialized in broncho... and has done research studies. My 1st appointment with him. Something happened and I was seen by a NP. Then the next appointment was made with her. When I asked for the doctor that I wanted, I was told "You started with her and if you want to change providers you will have to request it in writing." I will request it in writing if necessary. I have only seen her for the past 9 months. I do like my new PCP!!

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1 reply
raney | @raney | Oct 21, 2021
In reply to @montsi "Does your regimen include using albuterol soln or an other soln to open your airways prior..." + (show)
@montsi

Does your regimen include using albuterol soln or an other soln to open your airways prior to nebbing the saline? Do you use an oscillating OPEP Device to help move the phlegm? I have wondered about the safety of using albuterol long term.

Jump to this post

The pulmonologist at UNC CH ordered Albuterol 1st but I could not take it Tight chest and felt like I could not get air in. Then she ordered Levalbuterol. Could not take that either. Caused tachycardia for about 2 hours afterwards, shortness of breath and hands trembling. Now I do not have anything to open the airway before the saline. The problem is the beta blocker that I have to take for arrythmias and the bronchidilators interact. My cardiologist has me on the very lowest dose of beta blocker and also tired a calcium channel blocker, but the calcium channel blocker did not work. I am going to contact the pulmo specialty clinic in Chapel Hill NC and see if they ahve suggesions.

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raney | @raney | Oct 21, 2021
In reply to @pal131 "Do you mix the 7% Saline with anything else? Does your Dr. prescribe this method of..." + (show)
@pal131

Do you mix the 7% Saline with anything else? Does your Dr. prescribe this method of clearing your lungs?

Jump to this post

No. Each is neb separately, because of the severe reaction that I had to meds and not sure which one caused it. She started me on 7% NaCL; then added budesnide to be neb last and then added Albuterol which I could not use and then added Levalbuterol which I also could not use. Now I am just doing
7% NaCL followed bhy budesnide and in between the 2 I use the Smart Vest and the Aerobika and huff cough.
Last I gargle with warm salt water and do nasal wash for chronic sinusitis.

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raney | @raney | Oct 21, 2021
In reply to @pal131 "What does the LA after the Mucinex mean?" + (show)
@pal131

What does the LA after the Mucinex mean?

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Long acting

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Mentor
Sue, Volunteer Mentor | @sueinmn | Oct 21, 2021
In reply to @montsi "Does your regimen include using albuterol soln or an other soln to open your airways prior..." + (show)
@montsi

Does your regimen include using albuterol soln or an other soln to open your airways prior to nebbing the saline? Do you use an oscillating OPEP Device to help move the phlegm? I have wondered about the safety of using albuterol long term.

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My kids, nieces, nephews, brother and l have used albuterol for going on 50 years - no apparent lung, heart or circulatory damage...
Sue

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alleycatkate | @alleycatkate | Oct 22, 2021
In reply to @raney "I do have GERD and have been on Pantoprazole for 3 years. I have the HOB..." + (show)
@raney

I do have GERD and have been on Pantoprazole for 3 years. I have the HOB elevated 6" and not eating for at least 2 hours before going to bed.
My present pulmonologist. The jury is still out. I selected this practice because and a particular doc because he specialized in broncho... and has done research studies. My 1st appointment with him. Something happened and I was seen by a NP. Then the next appointment was made with her. When I asked for the doctor that I wanted, I was told "You started with her and if you want to change providers you will have to request it in writing." I will request it in writing if necessary. I have only seen her for the past 9 months. I do like my new PCP!!

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Yikes..@raney ! You are being seen by just an NP and the Pulmo will not see you without a written request? If I were you I would be looking for a Pulmonologist that cared for his/her patients. Sorry to be so blunt and to put in my 2 cents ..but sounds as though you are just being shuffled around and not getting good care or even the attention from the Doc. I would be running, not walking from this.

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