Life Expectancy with cavitary MAC

Posted by mch (Marycarol) @mch, Dec 16, 2022

Just diagnosed with cavitary MAC (2 cavities at 1.6cm). Frantically educating myself. My pulmonologist agreed to let me “wait and see” for 6 months in response to my concerns about drug side effects, especially vision and hearing. But from what I’ve read so far, I’m now close to panic that delaying is a bad idea….that the meds are inevitable….and the potential for disease progression due to cavities is significant. I’m coming to terms with accepting the life impacts of the treatment and the realization this may be a life long battle due to high rates or recurrence. But I desperately want to know if my reality is I should take steps and plan for a much shorter life. I’m 66 now. Is this disease fatal? Does it reduce life expectancy? The only data point I have found so far says 5-year mortality is 25%! Never thought I’d wish for cancer as a better option. I’m afraid to know the answer, but l’m overwhelmed by fear at this point.

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

francesca1 | @francesca1 | Aug 16, 2023

In reply to @rstel7272 "5+ years for me and I have 8:30 tee time Monday" + (show)

You seem lucky, I don't have the breath, nor stamina to do anything. Have been bedridden for 7 years.

mokie | @mokie | Sep 6, 2023

In reply to @bluesplashgirl "Hello to MCH, I agree with the statement above that you should stop searching the internet...." + (show)

@bluesplashgirl

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

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Can you tell me more about the "dry salt inhaler" and why you use LifeStraw? Is regular water bad for MAC?
Mokie

BlueSplashGirl/ Carolyn | @bluesplashgirl | Sep 6, 2023

In reply to @mokie "Can you tell me more about the "dry salt inhaler" and why you use LifeStraw? Is..." + (show)

Hello, I use a Lifestraw just to add a little extra precaution to what goes in. I had my water tested for MAC and it was negative. I still use the straw. As far as the dry salt inhaler, I never felt that inhaling cold, wet air into my lungs was a good idea so I switched to dry salt inhaler (Nevelers on Amazon). Purely anecdotal.

Sue, Volunteer Mentor | @sueinmn | Sep 7, 2023

In reply to @mokie "Can you tell me more about the "dry salt inhaler" and why you use LifeStraw? Is..." + (show)

Hi Mokie, and welcome to Mayo Connect. I notice in another post you mention you are new to our site and our support group. Mayo Connect is a place for patients and caregivers, who are not medical professional, to share our information and experiences. We do not replace doctors and other providers, but many times our shared experiences lead you to ask better questions of your team, and find the best treatments for you.
You might be interested to read about some of our experiences to get a sense about how wide the range of levels of illness, effective treatments and personal efforts to "tame the beast" that is MAC and Bronchiectasis. Click here for a recent discussion: https://connect.mayoclinic.org/discussion/macntm-is-different-for-everyone-treatment-might-be-different-too/

Here is what MOST of us have in common:
We have Bronchiectasis or another chronic lung condition (like asthma or COPD)
We have or had another lung infection like MAC (also referred to as NTM or MAI), pseudomonas or aspergillus
We do airway clearance - with a device, a nebulizer, a concussion vest or breathing techniques to keep mucus out of our lungs as much as possible and avoid infections
We take precautions to avoid exposure to NTM and other infectious agents because our lungs are vulnerable.

Here is how we are DIFFERENT:
We may or may not take antibiotics to treat NTM. There are as many reasons as there are people.
How we do our airway clearance and how often
What other actions we take to keep the mucus thin and moving in our lungs - nebulized 7% saline, medications, supplements, exercise...
What precautions we take to avoid exposure

There is far too much information to repeat here, but I will answer the questions about the dry salt inhaler and LifeStraw.
There is quite a bit of evidence that salt suppresses the growth of NTM. National Jewish Health and other experts recommend using 7% saline solution in a nebulizer to introduce it into the lungs, where it serves to make an inhospitable environment and to thin mucus so it can be more easily expelled. Whether a dry salt inhaler also known as "halotherapy" is as effective is just now being studied. Here is a paper citing several studies, if you like heavy reading.
https://pubmed.ncbi.nlm.nih.gov/32827399/
NTM can be in drinking water. This can be problematic for people with GERD (reflux) because some of that water may find its way to the lungs. Regular water treatment and filters are not sufficient to remove mycobacterium, so people choose to use a filter like LifeStraw to further filter their water. Others boil their water, or drink bottled spring water.

The more you read, the more questions you may have - there is so much to learn!
Sue

mokie | @mokie | Sep 7, 2023

Thank you for helping me navigate this, Sue!!

Mokie

pw | @pawster | Aug 9 6:26am

I’ve lived with MAC with cavities since 2015 and have had a healthy great life. Please be positive. Nobody would know if I didn’t say I just have bad lungs when implicit bad air situations and/or if I ever do overnighter with friends. I’ve done antibiotics twice in 9 years for one year each so far. Just finishing second time now. I do have slight growth again in cavity, so doctor may recommend prolonging antibiotic treatment or going on amikaycin. I’ve lost 10 lbs I don’t need to lose, but I try to keep up my muscle with good diet and protein drinks. Stomach problems with antibiotics is tough; they did take Rufampin out of the mix for me. Keeping my muscle up with weight training. I fret sometimes, but mostly I enjoy a healthy healthy lifestyle and life.

cwal | @cwal | Aug 10 6:21am

In reply to @pawster "I’ve lived with MAC with cavities since 2015 and have had a healthy great life. Please..." + (show)

Good to know and glad you have done so well! Why did they take Rifampin "out of the mix" of the Big 3 for you?

Rick | @rstel7272 | Aug 10 7:44am

In reply to @pawster "I’ve lived with MAC with cavities since 2015 and have had a healthy great life. Please..." + (show)

Pw, I've had my cavity since before 2019. While it makes management more difficult, I too feel healthy and positive.

Sue, Volunteer Mentor | @sueinmn | Aug 10 9:29am

In reply to @cwal "Good to know and glad you have done so well! Why did they take Rifampin "out..." + (show)

Not @pawster, but sometimes people react badly to a second round of rifampin even though it was tolerated the first time. I think the most current protocol is to resume treatment without it, and add Arikayce if you don't clear in 6 months.