Life Expectancy with cavitary MAC

Hi!
Please stop reading the Internet… for now. Yes, it is a serious chronic illness but many people live decades with it. Keep in mind that clinicians struggle with this disease because there is very little research or definitive result data for them. I have Bronchiectasis, MAC, and most probably chronic hypersensitivity pneumonitis.
I’m 59 years old and have been on the Big 3 treatment for 6 months. Side effects are not that bad for me and tolerable. I actually feel better on meds than I did before diagnosis.
I freaked out initially- WE ALL DO!! But put your mind at ease and know there is a ton of people here that are Living this disease and our here to support you!!
Blessings, Dee

Thank you for the encouragement, Dee. Google is a wonderful tool, but it can be a mine field as well. I’m someone who can’t help digging in to find all the details. I need to understand! Hard when, as you say, there are serious limits to what the medical profession can say about this disease. Glad I found this site as the real life experiences of “fellow travelers” is critical to my peace of mind.

Hello to MCH,
I agree with the statement above that you should stop searching the internet. That is the most unreliable rabbit hole you can fall down and a scary one that always ends with things like a 5 year mortality rate. It isn't true for most people with illness. Our infection(s) are serious and should be discussed with a live doctor at a trusted facility. Rochester Mayo Clinic is wonderful and my infectious disease doctor here in Minneapolis is affiliated with Mayo. They trade information. I had a cavity that started last year and continued to grow. I made some personal decision against my doctors advice and stopped nebulizing the saline solution. Purely anecdotal, but I decided to use a dry salt inhaler and my aerobika along with acupuncture (not dry needle but actual TCM acupuncture), an infrared heat wand on my chest (my cavity was close to the surface in my upper right lobe), only drank water from my LifeStraw water bottle, wore a mask while gardening, raised the head of my bed 4" (because MAC can live in the gut and reflux at night), I changed my shower head to a rain shower head so the water wouldn't mist, So, needless to say - I did everything I could to minimize my exposure. I was diligent and when I went to Mayo 4 months later in February last year to meet with a surgeon to begin the process of a vat procedure I had another CT scan and the cavity was gone - it had collapsed. Why? They didn't know because the things I did fell beneath their radar. However, my doctor was interested.
MAC is tricky and it is very opportunistic. Those of us who suffer must be vigilant in every way so we can avoid the things that can allow it to grab hold again. This is my second go around with this bugger of an infection and I have made personal choices of how I move forward. At 65, I want the back half of my life to be happy and active for however long that may be. I make my own choices on how to proceed if and when it returns again. I try to stay flexible with those decisions. I was afraid and angry for some time this last time around until I decided that I still have choices on which treatment or not. I do encourage people to stay connected here. There are so many wonderful people who are knowledgeable, caring, comforting and kind. Reach out and they reach back. (shout out to my girl - Sue - @sueinmn ) Dee is correct - we all freak out in the beginning. The wonderful thing about life, about science, is it is always evolving. I wish you comfort and health moving forward and we are here for you!
Carolyn

Aah, these women have given you fabulous advice.
Remember - Bronchiectasis is a rare condition - I never heard of it before my diagnosis. MAC is even more rare, and cavitary MAC - well, hardly a "blip" on the statistical radar. My first pulmonologist, with 30 years of experience, said he typically sees about one MAC case a year in a metro-wide clinical practice.

Our Connect community is a safe place to ask questions because we are living this journey along with you. And better still, we are a moderated group, meaning any unsafe suggestions are flagged or removed. And everyone is kind and respectful of others.

Since you are new to this disease, please be sure to ask for an explanation of any unfamiliar term. And poke us if we lapse into jargon!

To quote my ID doc, "MAC and Bronchiectasis are conditions you learn to live with. Few people die from it."

Yes, we take it seriously, do our preventive care, take meds if we must, and figure out how to keep going.

Sue

HEALTHY LIFE: You can continue to live a healthy happy life! I have had cavitary NTM/MAC since 2015. Still alive and doing relatively well. I'm super active. AEROBIC activity daily is key. Staying active and doing the right things for your health become even more important. Wish I didn't have this awful disease, but so many of these comments were very helpful. I wish I had known about and utilized the resources on this website. All of these comments in response to the person recently diagnosed with NTM/MAC are so very helpful. It's a process and each person's journey is so individual. Going through cancer was less lonely, because everyone knows someone who has cancer. NTM/MAC is like the secret disease.
My advice: Your PULMONOLOGIST is super important. Having a team of doctors is important. Don't settle for a doctor that doesn't match up with you. There are many good doctors, but s/he must match with you.
YOUR DECISION: Everything is ultimately your decision.
MEDICAL KNOWLEDGE: This is antiquated. Money is not out there to research this disease, no sex appeal. Pulmonologists have a difficult time with this. Not popular. I have HOPE that there's starting to be movement toward research and there are ways that we can all help progress that. You will share in the decision making in your health.
REACH OUT: I started giving my name and phone number to health professionals telling them they may share my phone number with someone else who has MAC/NTM in the community that they know of. I've told trusted indidivudals. I now know personally a grand total of 5 others. I'm so sorry that each of them has it, but it has been a great comfort and positive experience for each of us.

All such good comments and very helpful. This 5-year deal for living has really bothered me and I'm not sure I want to share that info with my wife and others. This MAC is really rough and I'm doing the Big 3, Albuterol, Sodium Chloride Nebs & Arykayce. Not sure what else to add as this all is just about all I can deal with and still keep my struggling business alive. Your words and ideas are so important and helpful and anything else you can suggest would be welcome!

I'm on the "Big 3", I have tinnitus and some mild hearing loss, my other side effects are manageable as I take mine at night before bed. Don't be scared by the treatment, we're all here for you. I hope you are doing Aiway Clearance as that is No.1 in the battle IMHO.

I started the big 3 this past summer and no side effects. I take a probiotic every day, too. Work with your providers and it will be ok.

Carolyn - thank you so much for sharing all the details of your efforts. Being proactive and doing everything I can is critical for me to feel like I have some degree of control over how my life will go. I'm not someone who can just let the doctor do all the heavy lifting and cross my fingers it will all work out.
I've had periodic acid reflux for years and am concerned that may be a key to why I got this as I don't fit any of the other characteristics that seem to be relevant to cavitary MAC - Not male, never a smoker, no other lung conditions, no immune deficiency issues that I'm aware of...I watched a YouTube video put out by National Jewish Health on Acid Reflux. First I ever heard that PPI drugs like Nexium address acid production but NOT reflux per se, but it makes sense. Something as simple as elevating my bed seems like a no brainer!
Can I ask...how often do you replace the filter in your LifeStraw bottle?

Thanks, MC

Pawster - Thank you for the encouragement and advice. I've been struggling since COVID to get back in shape. Was afraid this diagnosis would force me to continue being a couch potato. Glad to hear you say being active is not only important but POSSIBLE!

Thank, MC