What is the prognosis for mac and bronchiectasis?

I’m really sorry you need to be here and think your fear is completely normal. This is a very knowledgeable and helpful group.
I was diagnosed 3 years ago after a few years of having horrid coughing episodes and episodes of low grade fevers. Unlike most, I had CT’s showing my couple nodules progressing to trees-in-bud then bronchiectasis. My bronchiectasis is mild and my health feels much improved since I got the diagnosis and started the plan. My PFT’s are good and cough vastly improved. I went to Mayo (was thought to have MAC based on CT’s but didn’t) to get a firm diagnosis and a plan. They put me on an airway clearance routine. I follow at Penn.

I think life expectancy varies with severity of disease and your treatment. Many have a normal life expectancy and some here have dealt with it for years. I believe most will agree that having docs who knows how to treat you AND how to guide you in maintenance after your treatment are key. If your doc didn’t have you start airway clearance, I’m guessing he/she doesn’t deal with MAC patients often.

A few questions that will help others here guide you:

How severe is the bronchiectasis? Were all 3 cultures positive for MAC?
Are you seeing an infectious disease doctor?
Are you located near a center that has a bronchiectasis clinic? A consult with one can be very helpful especially on decision on when and how to treat MAC.
Hugs to you. I’m betting if you get a good plan, you’ll improve and do ok.

I was dx 6 years ago and doing ok. Yes it is very upsetting to not know if we will secumb to this disease.
You need to see a pulmonologist who specializes in BE and MAC.
I was givem meds for MAC but had to stop afer 7 weeks.
Hoping that airway clearances, vest, nebulizer and active life will keep it at bay for a long time.
According to the literature, BE life expectancy is 5 years.
Everyone one is different.
Find a good doctor to treat you
Good luck!
Marie

There is conflicting info about life expectancy.
Cleveland Clinic says:” With proper treatment, most people with bronchiectasis can expect to live as long as someone without it.”
NIH says this: “If properly treated and monitored, most people with bronchiectasis have a normal life expectancy. People with bronchiectasis are more likely to die because of other medical conditions that affect all people (like heart disease or cancer) than to die directly from bronchiectasis.”

People with severe lung disease and smokers are more likely to have a reduced life expectancy.

I also want to add that more attention is being paid to bronchiectasis now with the specialized clinics that help us manage the disease and with the patients forums that help spread helpful information. There’s even a new drug for bronchiectasis itself coming out this summer.
I find many reasons for hope. My PFT had even improved at my last visit.

Ah, Marie,
My ID doc told me when he was treating my MAC that if you control the BE with airway clearance and lifestyle and take the antibiotics when needed, there is not reason not to live a normal lifespan. When I asked about the "5 years" in the literature, he told me he had NEVER lost a MAC patient in 5 years, and had only lost two, who waited many years before seeking treatment, in 10 years.

When he discharged me 5 years ago from antibiotic treatment his words were "Bronchiectasis is a disease you will live with, not die from. "

My Mom had Bronchiectasis for years, took antibiotics frequently, and ultimately died at 85 of an unrelated illness, so I believe him.

So far, I'm still going strong and once I regained my strength after the meds, and got better control of my asthma, I plan to be here for another 25 years (Long life genes - my Dad's little sister is about to turn 98 and still going strong 💪 ❤️; his big sister raised 13 kids and lived to be 92.)

Many times in this group, I have encouraged members to stop worrying about the future and start living in the present- can you work on it?

Hi Sue
Thank you for encouraging words.
I do my best to keep active and do everything to keep my lungs as healthy as possible.
Yes we all have to live our lives.
Marie

Yes but having a chronic lung infection MAC will reuce life expectancy.

Sue, how long has it been since you were initially diagnosed with MAC and bronchiectasis? Just clarifying.

There is hope. I was diagnosed with MAC and Bronchiectasis in 2013. After 14 months on the Big 3, I have had no more positive tests. I use postural drainage and airway clearance every day. (It is a good time for me to listen to books on tape)
Keep up with vaccinations, wear a mask when in a crowd, clean up your humidifiers and shower heads, and avoid people who are sick and you will be able to last many years. Bronchiectasis is a chronic disease, not a life-ender. I have one dead lobe and another halfway there, but my 02 is at least 95% and sometimes 97%.
You can be thankful that doctors now understand the disease better than in the past and accept that maintenance will keep you healthy, just like brushing your teeth every day. You can live a long and happy life by getting educated and letting go of the fear. Good luck.

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?"

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.