Life Expectancy with cavitary MAC

Rick....nice to see your posts and to know how all is going for you on the journey.
I don't recall seeing how long you have been on the journey with Bronchiectasis and then the infections. How long has it been since your diagnosis with Bronchiectasis, BE.? Did they find an infection with the original diagnosis or infections started afterwards?
Barbara

Hi MC,

Maybe 25% of people diagnosed with MAC die within 5 years but most likely from something else-not MAC.

Are you nebulizing with 7% saline, twice per day? That should be your first step. Air way clearance, eating healthy, and exercise is top priority. When I had no appetite, I still ate. Try to keep your BMI up. I was diagnosed with M. Abscesses and 1 cavity, and I felt the same way. My Abscesses was macrolide resistant. MABs is fast growing and there is no standard treatment.

Do you know which antibiotics your MAC is resistant to? If it's not resistant to macrolides (azithromycin and clarithromycin), that's great news! As for cavities, there are antibiotics that are better than others that can clear cavities. Don't quote me: I think Linezolid, Imipenem, or Nuzyra may be one-but not sure.

I had both a local pulmonologist and an ID doctor in AZ, yet I decided to go to National Jewish Hospital-Clinic in Denver. It was one of the smartest things, I have ever done!!! By the time I got to NJH, I was on antibiotics for only 3 weeks. I was there for 2 weeks and the first week was all sorts of tests. The first couple days I was there, they cut my Linezolid dose in half (they took blood test to see how my body was metabolizing the drug) and took me from daily Arikayce to 3 times per week-and later suggested inhaling IV amikacin. Nuzyra was making me sick, and they were planning on switching that out. Additional antibiotics were tested for Susceptibility and Resistance that were not tested here in AZ. I also learned a drug that was totally ruled out by my ID doctor, was not ruled out by the NJH doctor. That was Imipenem, which apparently is too unstable to last in the lab medium to determine R or S, and it showed "R" at the local lab. Also, I was told my MABs count was very low. This is important, yet my local doctors never mentioned any counts done. By the second week, I was off all my meds; they told me they wouldn't have started me on any antibiotics, since my MABs count was so low and CT scans did not show any progression since diagnosis. I am now "watchful waiting". I go back next month for a follow up CT and if no change, 1 every 6 months. I chose to go back since I have family in Denver. In most cases, the local Dr takes over but gets advice from NJH. Also sending in monthly sputum samples to NJH. The last one was negative. If and when I go back on antibiotics, I will be on lower doses and have more choices.

I'm happy you are on this forum, I have learned so much here, especially with links to videos and research studies-and personal stories. In September, NJH is doing a BE/NTM video conference online-may be worth signing up for. I don't have the link, but you can google it. My Doctor (Dr. Haas) will be one of the presenters.

Good luck!

Kathy

Hi MC,
I just sent you a LONG reply and then saw the date of your post. I hope you're doing well.
Kathy

First diagnosed in March-June 2019 with BE, MAC and cavitation. Symptoms were present for several years prior to this date

Thanks for your reply.
Rick - That must have been a moment when you said to the doctor "let me sit down. This is a bit much to comprehend and take in emotionally."
You have done such a great job of persevering and that 'ain't' easy. Your posts help so many!!!!
Yes, my symptom of needing to clear my 'throat' in the mornings began a couple of years before my diagnosis. Every once in awhile I would bring up, what I now know of as a mucus plug, that was deep green in color. When I told my PC doctor about it he wasn't concerned. I no longer have the deep green it is faintly yellow as a mucus plug and the mucus is nearly clear if not clear. I was one of the so called lucky ones that the MAI in 2023 was a low count. Waiting on my last sputum submission to know what is what. I have felt well all along and I think that confuses the PC doctors. It was my weight loss that finally caused him to order the C Scan.
Barbara

It’s not approved yet. Sent back for more research I read. Sounds like side effects similar to the big 3

I'd take the big 3 side effects over the vfend side effects any day

You have really been through it but I appreciate your positivity and information you share about your experience. I agree with you about the meds, as rough as the big 3 are, the antifungal almost did me in. Once I got the confirmation I could discontinue after 3 months I was counting down the days. I would choke mine down with a piece of shortbread then stumble up to bed with ginger and zofran nearby just in case.

Hi Rick, I was diagnosed 3 years ago with BE and my first infection was ecoli in 2022. It took 12 months to clear that out. And after my last dose and two weeks later, I had pseudomonas and has been with me for the past two years. On many occasions, it also came with aspergillus and candida or some other fungi/yeast. I took Cresemba for the fungal infection when detected; taking it for one month then not again for several months until I get another fungal infection.

Unfortunately Pseudomonas is quite stubborn, I have done IV antibiotics at 6X during the last two years. I feel great when I am on antibiotics but two weeks after, I get it again.

Just wondering if there is ever a time when there is a a month or more where folks are infection free.

I had a six month window about 3.5 years ago where I has no AB's and felt ok. This story never seems to end