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

Posted by Sue, Volunteer Mentor @sueinmn, Apr 20 9:38am

Trying to start a positive, upbeat discussion, please.

When first diagnosed with Bronchiectasis, many of us have never heard of it. We get little info from the doctor, and turn to the internet for information. Bronchiectasis, with or without accompanying infections, creates many challenges in managing the disease and its symptoms. Sometimes the diagnosis comes after a long journey through the health care system. And sometimes it comes on top of other chronic health issues or diseases. It can be downright scary.

Years ago my PCP, pulmonologist, and ID Doc each told me "This is a disease you will always live with, but are unlikely to die from, take reasonable precautions and go out and live your life. " Recently Dr Jennifer Honda said the roughly same thing in her Webinar:


Many new members come to Connect asking, essentially, how can I live with this disease?

You can help! I invite those who have managed to stay active with family, job, hobbies, exercise, volunteer work, travel, etc to tell us how you overcame the initial shock and are managing an active life day-to-day while handling airway clearance and health precautions. Y'all hear enough from me - I'll share my story after you share yours.

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

Profile picture for blm1007blm1007
blm1007blm1007 | @blm1007blm1007 | Jun 26 10:21pm
In reply to @mffox "@blm1007blm1007 I was diagnosed with MAC in 1997. I didn’t hear the term bronchiectasis then… the..." + (show)
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@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.

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@mffox Thank you for your response.
When I was told I had BE I had not heard of it as many of those I talked to about it had not heard of it. Several nurses had not heard of it and this was in August of 2022. Then a new neighbor moved into the neighborhood and her husband had it along with other serious problems.
Since 1997....that's a long time and has required much of yourself.
Oh, pseudomonas...I have read enough on Mayo to know it is hard to control.
Glad you are experiencing a change for the better with Torbramycin.
"I expect to continue to experience other infections over time". That weighs heavy on my mind ....it's not if it is just a matter of when,, ,,more than likely find it's way to me. I have had the intracellular for a good few years, so far nothing else has showed up.
I think those who have had BE for a long time, when not much information was available, caused many to suffer with pseudomonas.
Hoping I can keep my airways open for a good while yet. So far PFT is good and no wheezing or crackling heard in the lungs.
Barbara

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val2652 | @val2652 | Jun 27 4:10am
In reply to @blm1007blm1007 "@annagh Interesting to me. You were diagnosed in 2015 with BE and in 2022 with MAC...." + (show)
Profile picture for blm1007blm1007 @blm1007blm1007

@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

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@blm1007blm1007 I saw this on this site a couple of years ago. It should help clear the lungs properly. Watch till the end as the doctor recommends the cheaper version of these methods.

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magien | @magien | Jun 27 10:25am
In reply to @mffox "My approach to living with bronchiectasis : Accept that this is a chronic disease. My job..." + (show)
Profile picture for mffox @mffox

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.

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@mffox
You are doing an amazing Job. Keep it up you have a very inspiring approach.
I have one question for you. If you notice a color change in the sputum, what do you do to be proactive/ ready?

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1 reply
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mffox | @mffox | Jun 27 3:08pm
In reply to @magien "@mffox You are doing an amazing Job. Keep it up you have a very inspiring approach...." + (show)
Profile picture for magien @magien

@mffox
You are doing an amazing Job. Keep it up you have a very inspiring approach.
I have one question for you. If you notice a color change in the sputum, what do you do to be proactive/ ready?

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@magien
Darker, thicker sputum I view as an indication that I need to be more aggressive in clearing the airways. More time spent with breathing exercises, forced expirations, coughing, coughing, coughing to bring up the deep-down stuff. When I was on oral antibiotics I had a refillable prescription and would start treatment when I reached a point where I was exhausted, not up to more than one activity per day, fatigued, taking more than 2 naps per week. Another tell-tale sign: I looked in the mirror and saw my mother on a bad day. My I.D. doctor described the bacteria as finding “sanctuary spots” in my lungs. I tried to empty those hide-outs. When my efforts weren’t enough it was time for antibiotics. In recent years, that has meant IV meds, a major hassle but effective.
I only know what works for me…. Bronchiectasis seems to act differently in each of us. Study your body’s patterns and find your own approach.

REPLY
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annagh | @annagh | Jun 27 7:01pm
In reply to @blm1007blm1007 "@annagh Interesting to me. You were diagnosed in 2015 with BE and in 2022 with MAC...." + (show)
Profile picture for blm1007blm1007 @blm1007blm1007

@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

Jump to this post

@blm1007blm1007
My primary care doctor made the bronchiectasis diagnosis after several bouts of walking pnemonia. It took a while to get to a pulmonologist as I was in the process of relocating. He suspected MAC (2017), but I didn’t yet know how to get a good sputum sample and he opted not to do a bronchoscopy, saying my CT Scan actually showed some improvement, and he’d rather not treat me due to the potential side effects of the drugs. Unfortunately, he didn’t offer nebulizing or airway clearance and I basically lived with the cough. It was H-influenza that finally made me sick enough, that the broncoscopy revealed MAC. From you posts I see that you are very diligent about investigations and self-care, which is admirable. Good for you! We each have our own comfort levels and ways of achieving them
Anna.

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