What is the prognosis for mac and bronchiectasis?

I started with MAC right off the bat in 2012. I have never had it since but have had a negative smear and a positive culture recently. Waiting until I get over Pseudomonas and clear out the antibiotics before I start new sputum samples to determine what's up.

I also worried about my lifespan. I was 55 when I picked up MAC. They were able to treat mine with oral medication at that time. Thus far no IV drugs. I am on Azithromycin 3x per week to discourage MAC from returning. I am now 68 and very active, not so much with specific exercises but with daily life movement. I still do yardwork on a steep slope, which gets me plenty of heart exercise.

I asked the Pulmonologist how long I would live. I was told that I could live out a normal life span if I were very proactive in starting treatment quickly, as things start to go south. I am very aware and listen to my body. I still travel, although it is way more difficult with the airway clearance machine and my nebulizer. Always get travel insurance because you never know with NTM's. I do find it mentally taxing to move forward with planning vacations because always nagging thoughts of , "Wonder if I will be able to travel this time or not." A mind game for sure. But push through and enjoy every minute of the time that we have. Having a difficult disease has a way of making you very grateful for the small things in life.

Just a note to say life is always a little different for those of us with bronchiectasis, but I was diagnosed in 2014 at Mayo's in Rochester but had truly suffered for more than 10 years prior to that with all specialists in my Oklahoma area. It never was diagnosed by any locals but my coughing and phlegm production was tremendous. And, finally as a last result I went to Rochester. I just had my 84th birthday and while I've never been cured (and I was told that upfront), there are good times and then some not so good but right now I'm doing very well. The first doctor I had at Mayo's smiled when I asked if I would die from this and he said "you will die with it but hopefully not from it". I'm thankful for all the help I have received. Jan

Hi Yorkieyoli,
You can live a normal life for sure now that you will be followed for your
BE and MAC. For me, the regimen of antibiotics helped the MAC to go negative although it took 18 months.
Daily Airway Clearance Protocol is KEY to keep the BE under control and the MAC from coming BACK. However when you have BE, I do believe one may be prone to having the MAC come BACK which I believe has happened to me recently. Because I'm being closely followed by good Doctors, I'm not overly concerned.

Thank you so much for this post! I think I really needed to hear this. I've been an emotional wreck since the diagnosis since I was told I was young to have this. Wow! You have an amazing attitude, and I need to learn from you! Wishing you the best of health, and joy of life!

Jan- I was fortunate in that it took me about 3 years vs your 10 years in Oklahoma to find out I had Bronchiectasis. After my seeing my PCP frequently to say "something is wrong" and carrying a "spit up" with me into the doctors office(s) my PCP finally said, "we need to do a C Scan" due to my having lost 30+ pounds. With the results in he called me into the office, sat down with me, held my hand and said "you have Bronchiectasis". With my making an appointment with a local OKC pulmonologist after the news, it didn't get me the help I should have expected therefore I headed up to NJH in Oct. 2023.
As of this date I have not started the antibiotics, my choice. That may change soon to see if it will help stop the constant need to clear my throat of the sputum/mucus. I have MAI.
I turned 82 this past October. Are you in the OKC area?
Barbara

Hi all
I know that we were told not to swim in an indoor pool because it has MAC.
Our building has an indoor heated salt water pool which will open soon after renovations.
I am trying to figure out the best way to protect myself. Looking into face shields and goggles.
Swimming is so good for lung health and overall body health.
Your thoughts
Thank you
Marie

@swhite54 Hello, I am new too. New to the group and newly diagnosed. I am in the decision making time....do I take the medication and risk maybe loosing my sight? I am an artist, I read and I crochet, this would devastate me. I am very interested to see that so many others have recovered well and nobody has mentioned trouble with their eyes. That is encouraging.

Oh dear, you sound like me. I am terrified too. I am looking for any encouraging words.

@robyn13 Yes, eyesight was a huge concern for me when I was prescribed the antibiotics, especially since I already have mild glaucoma. So I talked to my long time ophthalmologist, who encouraged me to "lick the infection." We proceeded with a vision testing plan where I checked myself every day for changes, however small. For the first year I saw her every 3 months, and with no issues appearing, it was extended to every 6 months in the second year. I finished treatment with no vision issues, and only a mild increase to my tinnitus.
That was over 6 years ago, and I'm still going strong. I was quite ill with MAC, and doubt I would be here if I wasn't treated.
Knowing what I do after 8 years on Connect, I would ask more questions before antibiotics, but would still have taken them because of the severity.
How severe is your infection? Have you tried "watch and wait" while using 7% saline and airway clearance?

No, I haven't heard of watch and wait. I will talk to my doctor about it.
Thank you. Also, what is Connect? Is that the antibiotics?
My report says that I have " low-grade mycobacterial lung disease
(Mycobacterium Intracellulare). We are currently in the process of doing
the baseline tests in regard to my eyesight and liver function.