What is the prognosis for mac and bronchiectasis?

Posted by yorkieyoli @yorkieyoli, Apr 13 7:36pm

I was diagnosed 3 years ago with bronchiectasis and mac lung (avium). Unfortunately it wasn't taken seriously as I'm asymptomatic, and was ignored until now, where it has progressed. I'm freaking out about life span as I'm still young.
I have no idea how long you can live with mac and bronchiectasis. Please tell me it's a long time 🙁
Does anyone know what the prognosis is?
I guess I'm looking for some hope, so if you feel comfortable writing when you were diagnosed, and how you're doing, or you have any information on prognosis, I would love to hear it, as I'm basically terrified.

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

@sueinmn

I was diagnosed just over 7 years ago, at the beginning of 2018, but had been ill with repeated respiratory infections for over 2 years. I was sick, weak, coughing non-stop, and could only walk about 50 feet without stopping to cough and catch my breath. I was repeatedly treated for asthma and bronchitis, would fell better for a month or two, then start all over. In Spring 2018 I was diagnosed with Pseudomonas and MAC, treated first for the Pseudo, then for the MAC.

I am healthier now, though 7 years older, than I was at the beginning, bronchiectasis is stable although my lungs are scarred from years of infection, and my asthma under control.

Today I was able to spend 5 hours on a beach at the Gulf of Mexico building sand castles with friends, my body is wiped out but my heart is full.

PS The salt air was like a day in a salt cave - boy are my lungs clearing on their own tonight! Fortunately we were with long time friends who know this is my "normal" just as taking walkers and sturdy chairs is normal for them. We crusty old folks don't let anything get in the way of having a great day. As my Dad used to say "Could heaven be any better than a day like this?"

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Thank you for sharing that. It sounds like a wonderful day!
Like you, getting the diagnosis and a plan dramatically improved the quality of my life.

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@sueinmn

This is truly something we cannot know - there are so many other health conditions that can overtake a slow-growing MAC infection or stable or slowly worsening Bronchiectasis that we never know if these shorten our lives or not. This is true of many conditions.
For example, my Dad had both heart and kidney disease - quadruple bypass surgery on his heart, stents in his renal arteries. Suddenly, he was diagnosed with Stage 4 liver cancer, and we lost him just 4 months later.

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So sorry Sue for your loss.
Marie

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@sueinmn

This is truly something we cannot know - there are so many other health conditions that can overtake a slow-growing MAC infection or stable or slowly worsening Bronchiectasis that we never know if these shorten our lives or not. This is true of many conditions.
For example, my Dad had both heart and kidney disease - quadruple bypass surgery on his heart, stents in his renal arteries. Suddenly, he was diagnosed with Stage 4 liver cancer, and we lost him just 4 months later.

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So many things in life that we go through and do not realize at the time of how it is affecting us. Having to be caregivers for our loved ones and watching all they are having to deal with health wise and wanting to find ways to make it better for them can find ourselves in a loving caring environment that somehow is affecting and taking a toll on our own health.
Many of us have all been there and understand the experience of it all.
So, many factors come into play, some directly and some indirectly to cause health problems and possibly Bronchiectasis. My thoughts.
Wishing that all the good memories we hold of our loved ones help in bringing smiles to us when we most need one.
Barbara

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Sue, first, we are all different, of course and genes play a big role. I am now 80. I was diagnosed with MAC and bronchiectasis in 2012 after questioning my mother’s pulmonologist about the possibility since my mom was diagnosed in her early 70’s. My mother lived until she was 89. She never received the now accepted treatment but rather with the fluoroquinolones and then azithromycin, I believe. I received the vig 3 treatment over 18 months and my MAC went into remission. I am quite vulnerable to lung issues so have a harder time w eg chest colds and covid knocked me back last summer. This past Fall I participated in an 18-session pulmonary rehab clinic that was outstanding. I learned how to breathe better. I carry a pulseoximeter when i go walking about 4 times a week and manage 4 miles at about 22 minutes per mile. Being active and exercising, I believe helps a lot. I just wanted to give you encouragement to be compliant with your pulmonologist’s instructions during treatment. - Jennifer

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I am new to this group and look forward to sharing this journey to better health with all of you. My first visit to my pulmonologist was in 2023, due to a suspicious nodule in my lungs found on a CT scan. I was told at that time that I had bronchiectasis, but I had no severe symptoms. He performed a bronchoscope and took a culture. Nothing grew from the culture so I went on with my life. Fast forward to today, my last CT scan was done in January of 2025. The doctor ordered another bronchoscope in January, 2025, and after weeks of waiting I found out I have MAC as well as bronchiectasis. He referred me to an Infectious Disease doctor. I had an appointment yesterday. She prescribed 3 different antibiotics (same as what I’ve seen in other comments Azithromycin, rifampin and ethambutol). I will also begin saline breathing treatments along with a flutter valve breathing device. My only symptoms at this time are shortness of breath and little dry cough.
I am 70 years old and very active and would consider myself in good health. I plan to start taking the antibiotics on Monday, and praying I tolerate the meds. Any advice, comments will be greatly appreciated!!

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@swhite54

I am new to this group and look forward to sharing this journey to better health with all of you. My first visit to my pulmonologist was in 2023, due to a suspicious nodule in my lungs found on a CT scan. I was told at that time that I had bronchiectasis, but I had no severe symptoms. He performed a bronchoscope and took a culture. Nothing grew from the culture so I went on with my life. Fast forward to today, my last CT scan was done in January of 2025. The doctor ordered another bronchoscope in January, 2025, and after weeks of waiting I found out I have MAC as well as bronchiectasis. He referred me to an Infectious Disease doctor. I had an appointment yesterday. She prescribed 3 different antibiotics (same as what I’ve seen in other comments Azithromycin, rifampin and ethambutol). I will also begin saline breathing treatments along with a flutter valve breathing device. My only symptoms at this time are shortness of breath and little dry cough.
I am 70 years old and very active and would consider myself in good health. I plan to start taking the antibiotics on Monday, and praying I tolerate the meds. Any advice, comments will be greatly appreciated!!

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Best of luck to you. I take all of antibiotics at night. If side effects show up, hopefully I will be asleep. I also keep ginger tea and peppermint tea and ginger chews on hand in case there is nausea. Yogurt and / or a probiotic during the day to help my microbiome.

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@desertdwellerjh

Sue, first, we are all different, of course and genes play a big role. I am now 80. I was diagnosed with MAC and bronchiectasis in 2012 after questioning my mother’s pulmonologist about the possibility since my mom was diagnosed in her early 70’s. My mother lived until she was 89. She never received the now accepted treatment but rather with the fluoroquinolones and then azithromycin, I believe. I received the vig 3 treatment over 18 months and my MAC went into remission. I am quite vulnerable to lung issues so have a harder time w eg chest colds and covid knocked me back last summer. This past Fall I participated in an 18-session pulmonary rehab clinic that was outstanding. I learned how to breathe better. I carry a pulseoximeter when i go walking about 4 times a week and manage 4 miles at about 22 minutes per mile. Being active and exercising, I believe helps a lot. I just wanted to give you encouragement to be compliant with your pulmonologist’s instructions during treatment. - Jennifer

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Your story is inspiring! You were diagnosed 13 years ago, and this is the first time you are doing the big 3? Have you just been doing airway clearance techniques and exercise up until then? It sounds like you are very diligent about being active. I admire that. I'm worried I won't be able to keep up the exercise routine I started. I'm 30 years younger than you, and I'm worried that I already have this issue at such a young age, and what that will do to my longevity

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@yorkieyoli

Your story is inspiring! You were diagnosed 13 years ago, and this is the first time you are doing the big 3? Have you just been doing airway clearance techniques and exercise up until then? It sounds like you are very diligent about being active. I admire that. I'm worried I won't be able to keep up the exercise routine I started. I'm 30 years younger than you, and I'm worried that I already have this issue at such a young age, and what that will do to my longevity

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My answer was not clear. I took the treatment in 2012.

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@wolfplanetzero

Best of luck to you. I take all of antibiotics at night. If side effects show up, hopefully I will be asleep. I also keep ginger tea and peppermint tea and ginger chews on hand in case there is nausea. Yogurt and / or a probiotic during the day to help my microbiome.

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Thank you for your reply. I hadn’t thought of taking them at night. I will definitely try the ginger and peppermint tea as well as ginger chews. I have been eating yogurt regularly and a probiotic. I’ll let you know how it goes!

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@sueinmn

This is truly something we cannot know - there are so many other health conditions that can overtake a slow-growing MAC infection or stable or slowly worsening Bronchiectasis that we never know if these shorten our lives or not. This is true of many conditions.
For example, my Dad had both heart and kidney disease - quadruple bypass surgery on his heart, stents in his renal arteries. Suddenly, he was diagnosed with Stage 4 liver cancer, and we lost him just 4 months later.

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@sueinmn I share a similar story. My Dad had Parkinson's. His health started to dramatically declined, and all of his MANY doctors assumed it was the Parkinson's advancing. Nope. It was cancer. They found it "by accident" on a routine scan about 10 days prior to his death. My Dad spent 15 reasonably healthy years with Parkinson's, always mobile and active, yet also always very worried about his prognosis (understandably). But in the end his health deteriorated from an entirely unrelated illness. Tomorrow is not promised to any of us. Carpe diem!

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