Tell us how you "Live Life Fully" with Bronchiectasis and MAC

I was diagnosed with bronchiectasis in 2015 and MAC, along with H-influenza, in December 2022. Treatment for H-flu improved fatigue and greatly. At that time I started nebulizing saline and using the Aerobika twice daily, but resisted starting the Big Three. My pulmonologist referred me to Dr. Winthrop, ID doc at OHSU, who put me on a Clofazimine study. I got the placebo, but cough and fatigue seemed more better than worse and my CT’s were basically stable. I’d found this group plus other information and had all the concerns about avoiding exposure to NTM, looked into water testing, carried my own water and a SteriPen for purifying water when I was out, was careful about sterilizing equipment and all that. Dr. Winthrop seems to be more casual about all of the precautions than some, saying, “You’re not going to avoid all of it. You’re going to be exposed. That’s what the airway clearance is for—prevention.”

I use my untested well-water for everything without treatment. I soak my Aerobika and nebulizer in soapy water while I boil water for 5 minutes for the final rinse. (Dr. W is definite about the boiled water for that final rinse, but says five minutes is plenty.) I was sterilizing equipment once a week, or every other week in a microwave bag, but have gotten very lax about that. Not only because of Dr. W’s attitude but also because of the studies that showed avium didn’t grow on the equipment even after it had been thoroughly exposed to avium cultures.

I take short showers with the door and/or window open and fan on. I’ve gotten more casual about drinking water in restaurants and other homes.

I try to walk 5 days a week and find it is very effective at getting the mucus up and out, and I do nebulize and use my Aerobika with the autogenic drainage ape to keep me on track —not sure I’m doing the actual breathing correctly, but it does have its effect.

Another thing I worried a lot about in the beginning was recognizing exacerbations and knowing when to ask for help. Fortunately, I’ve never had a really serious one. I do have a standing order for a sputum sample, just in case, but anytime I start going that direction, my immune system seems to knock it back down. I have not had a cold since before the covid lockdown. The only time I probably should have had treatment was with a sinus infection that lasted more than a couple weeks.

I have taken NAC 600 mg morning and night since just before the MAC diagnosis, suggested by pulmonologist. I also take guaifenesin when it seems appropriate. I have had an albuterol inhaler, but tended not to use it until recently. Now I do find it helpful if I take a couple puffs before my walk.

In January Dr. Winthrop advised that I start treatment. Though my CT scans were pretty stable there has been a decline over the 3 years and his opinion is that I’ll need to be treated sooner or later, and best to do it now before it does more damage. So I started taking Azithromycin and Ethambutol 5 months ago. My cough was much better by the end of the first week and I have had no side effects. It’s lovely not to be doing that hard coughing! I recently submitted my first sputum sample since treatment started, but this whole time I’ve had more negative results than positive.

As you can tell, I am one of the most casual people on this list. I work at the local food pantry one day a week, exposing myself to who knows what all, but seeing the people and contributing in my community keeps my spirits up. I try to live a reasonably healthy life-style, and not worry too much about the endless list of dos and don’ts. As my primary care doc said, “We don’t get out of this life without some aches and pains.” I’ll be 80 this month and plan to enjoy whatever time is still ahead of me.
All best, and sorry this is so long!
Anna

@shayshay123 I am sorry to hear that she has breathlessness.
I understand, somewhat about the not letting her sleep. For me I wake up at least three times a night. I'm not sure what is waking me up...meaning either my bladder talking to me to walk down the hall and release my bladder or the mucus with the Bronchiectasis.
Each time I awaken I have to take time to clear the mucus.
I don't have breathlessness, just yet,
I can't even imagine having to work and do all that needs to be done to help oneself with Bronchiectasis and the clearing of the mucus from the lungs while also doing what needs to be done to eat healthy and keep up with the daily tasks of life. That period of time must have been very hard for her.
As I sit and type I am constantly clearing the mucus from my lungs.
With your Mom (Mum) having BE for ten years the question is was she informed and instructed on what to do for herself from the beginning?? In many cases the doctors did not inform and instruct patients and that hinders ones ability to help themselves.
If she was informed and instructed was she able to do all that had to be done to clear the mucus daily.?
The doctor that helped me to understand all said to me "I'm sorry to say you have the lung disease that requires the most work."
All I can tell you is what I do to help clear the mucus. Your Mom may have been doing all this and already knows all.
First thing I do in the morning are simple leg and arm exercises and then walk for a mile every day. I walk in the house and do fine with that. I believe this helps to get everything moving and ready for the BE tasks to clear the mucus.
I then do all that needs to be done to clear the mucus.
1. Drink healthy, clean water...at least 4 cups or more throughout the a day.
2. Eat as healthy as possible to keep the immune system strong. (I do cheat some.)
3. Try to get 7 or 8 hours of sleep, not always possible. Since I am retired I can stay in bed a bit longer.
4. Nebulize 2x a day. First thing in the morning and an hour before bed. I'm thinking I may need to do it an hour and a half before bed.
5. Do air way clearance methods which involves deep diaphragmatic breathing and then huff coughing.
6. Postural Drainage. (This may not be possible to do if a person has Acid Reflux)
7. Percussion therapy on myself.
So much depends upon all the above and as well any other health problem(s) that also comes into play that adds to the concerns and chores we have to do for ourselves.
Your Mom may be mentally tired and that is understandable.
The best thing we can do for each other is to find a way to help with the things we can help with that will relieve one of some of ones responsibilities.... which will give us more time and space to do what we need to do for ourselves.
As with all of us, it is we who have to talk to ourselves and find our way to change what needs to be changed, if change is needed.
One thing I have just started with is a Speech Therapist. My new pulmonologist referred me to Speech Therapy. It is helping me with the breathing exercises and strengthening the tongue muscles.
I have only been diagnosed with BE since August of 2022. So in the big scheme of things I am fairly new to all of it compared to others that have had the diagnosis for years.
I do have a low load infection and have not taken the antibiotics. I am fortunate that I feel well and can do all this at my nearly 84 years of living.
I also have not found my way to being comfortable with the thought of being around others in a social setting due to the need to clear the mucus nearly all the time and especially after eating. I want to change that but I am having a hard time getting to that point of "just do it." I 99% of the time wear an N95 in public but do take myself out to eat at times when I know it is a slow period and very few people will be in the restaurant. We all deal with things differently.
I wish I had a big secret of how to make it well for her..... and I.
Barbara

@annagh Interesting to me. You were diagnosed in 2015 with BE and in 2022 with MAC.
Per all I now know I should have been told I had BE in 2015 when the pulmonologist just told me I had large lungs. That was told to me again in 2021...
The 2015 and 2021 X Rays per the doctors reading the X Rays indicated signs of emphysema..
Both times when I myself made appointments with pulmonologists after reading the radiologists report, .they both said I had "large lungs". They did not error on the side of caution and suggest a C Scan nor did I know that would be a wise thing to do at the time. Knowing what I know now I believe my lungs were inflamed due to BE.

It appears it may have taken a few year years for us both to have the MAC develop and surface and finally be diagnosed with MAC , approximately seven years after the showings of BE.

I am gradually working my way to lighten up about some of the same things you have mentioned. I am going to be 84 in October and feel well enough to do more than what I have been doing these last few years. It's just the constant clearing of what comes up to my throat, either the trachea or esophagus, that makes me want to clear nearly all day long and especially after I eat. The after I eat, is the worst part of this whole thing in terms of not feeling I can be social with people at meal times. Who wants to be around someone that has to clear mucus right after they eat.
Liked your post.
Barbara

I have had BE now for 18 months. I nebulize with 7% saline 2x/day. I often use my Aerobika in the morning, if I need a little more clearance. I use 2 sprays of Breztri a day, and I'm into my 4th month on Brinsupri.... and notice no difference in my condition with either of these.
Maybe they're helping...not sure. JMR69 talks about sterilizing water, adjusting water heater temperature, etc. This is news to me. I also read that people are soaking their nebulizer tube with Dawn Antimicrobial. I've just been rinsing mine out with tap water after each use. I suppose I should start soaking it in Dawn occasionally. Anyway, this is my contribution to this thread.
Barbara S.

@nygirl4159 Compressor tubing. Do you mean the clear long plastic tubing that goes from the compressor to the nebulizer cup items/parts? If this is what you are referring to it is not suggested to do anything other than to run the compressor with the tubing attached to the compressor to flush out any saline that might be in it and to dry it out, dry the tubing out.
Soaking in Dawn Antimicrobial is mentioned to do for the nebulizer cup, mouth piece and parts. etc. You do this first before boiling the items for five minutes in boiling water...preferably distilled water.
Yes you would find several posts here discussing keeping the hot water tank at a temperature to kill possible bacteria in the hot water tank. I believe it is approximately 140 degress that is suggested. Also, many do, I do, boil purified water for 10 minutes. It is a cautionary task to kill any possible bacteria.
Have you had a chance to read some of the other threads to hear and find suggested information regarding all and to help with air way clearance techniques and huff coughing?
Barbara

@nygirl4159
There are nebulizer cups and there is nebulizer tube. You do soak the cups in water and dish soap but you DO NOT use any water on the tubing. You just run it without the cups but with the tubing attached for three minutes.

@shayshay123

I am 88 years old and have BE....I decided five years ago to not take the big 3 again and just do Air Clearance ....plus vest, nebbing with albuterol and 7% saline solution' Recently, after having a bronchoscopy, I have a flare up with SEVERE COUGHING and so much phlegm and a friend who has been on hospice for other issues was told to use Tussin/Gavastein (sp) and after 3 weeks, 3 times a day my cough is 95% better. I buy it from Amazon for 9.99 . God Bless.

My approach to living with bronchiectasis :
Accept that this is a chronic disease. My job is to acknowledge the reality, expect ups and downs, and design a life that accommodates this.
Keep records: I have a file with printouts of CT reports, doctors’ notes, records of medication deliveries, whatever.
I also maintain a health diary, noting symptoms, medication changes, severity of exacerbations …. Whatever may be helpful in navigating this experience.
I track changes in sputum, dyspnea,etc….. I’m on the lookout for warning signs. I try to anticipate needs and take action promptly .
EXERCISE. I swim laps, walk, bike, play ping pong. My pace may be slow, I pause to catch my breath, appreciate park benches, lean on the ping pong table, panting….. I amuse my grandchildren but keep going. I prefer walking and talking with friends rather than sitting….a better use of time.
I carry plenty of tissues (my daughter uses fabric scraps to make Kleenex packets… cotton doesn’t make crinkle noises like the cellophane packs).
When I need to cough in public I do it thoroughly and try not to be embarrassed . At a concert I inform the strangers next to me in advance: “I’ll be coughing… it’s not contagious “. If they don’t like it that’s their problem.
My grandchildren laugh and make fun of me when I have a coughing fit. They were brought up to think it’s a normal part of life, and congratulate me on a successful spitting session.
I keep a covered plastic cup containing a paper cup in my car, using it as a spitoon while driving. I dispose of the paper cup promptly.
I’m underweight, so I load my plate with protein and calories and do my best to empty it.
I use my chest compression vest 30 minutes twice a day without fail.
Take my meds, nebulize 7%saline, even when I want to skip it.
Expect to have a couple of lung clearing sessions daily… using Accapella device, positioning, controlled breathing, huff coughing. This is trial and error to find what approach is most productive for me.
Keep an eye on sputum… quantity, color, consistency. Watch for changes. At home I keep my small, enamel “spit bowl” handy.
I had a warm personal relationship with my long-time physicians…. And will try to do the same with the newbies now that those guys have retired .
Bronchiectasis has had a major impact on my life in the last 30 years…. But it has not stopped me from living.

@mffox I may have missed how long you have had BE.
How long have you had it and were you having to clear and remove (spit) as much as you do now as it was in the beginning for you. Was it less of having to do it in the beginning.
I have to constantly clear what comes up to my throat. Much of what you have said sounds like me with needing to clear out what comes up to the throat.
I have a cup with me all the time.
Barbara

@blm1007blm1007
I was diagnosed with MAC in 1997. I didn’t hear the term bronchiectasis then… the focus was on clearing the infection, and then dealing with subsequent infections. I wish I’d had a better picture of what I was dealing with and what the long term consequences might be.
Cough varied with the status of infections but a persistent productive cough has been present since @2003. I’ve had a spit bowl for at least 20 years. I’ve been colonized with pseudomonas bacteria for about 15 years, treating with various antibiotics. A course of antibiotics would reduce the severity of the cough but it was never entirely gone until last month, when I started a new program of nebulized Tobramycin. It has been amazing, I’m enjoying the freedom but not expecting it to last forever. The bronchiectasis as still a reality and I expect to continue to experience other infections over time.
Meanwhile I continue with my vest, medications, and other measures to keep the airways open.