Prognosis

@strong4130 Welcome to our support group for people with NTM and Bronchiectasis - we're a very great and helpful group that nobody wants to belong to!

When someone is facing this diagnosis, and begins to read - especially using Google, it can be very scary - I remember the feeling well even though it was almost 7 years ago. I am so grateful I found this group, where I have learned an amazing amount about living with the conditions. We always say "everyone is different, your results may vary." You can read here about people who are quite ill, and undergo repeated courses of medication, others who work hard to manage their infection without antibiotics, others whose bronchiectasis/MAC is totally asymptomatic.

Years ago, both my ID doc and my Primary told me that "Bronchiectasis is a condition you live with, very few die from it. Take sensible precautions and go live your life." I have tried to follow that advice.

My story - after being VERY ill with both MAC & Pseudomonas in 2017/2018 (it took many months to get a correct diagnosis) and taking medications for over 18 months, I have been managing my Bronchiectasis and Asthma with 7% saline nebs and airway clearance plus asthma control meds and reasonable precations for over 5 years without relapsing into either infection. My bronchiectasis is stable per CT, and my asthma is under tight control. I am in my mid-70's and this is a blessing as I manage all the other issues that come with increasing age.

There is a lot of good news these days, with improvements in airway clearance practices to help keep lungs clear, widening use of Arikayce for treating reluctant infections, a coming biologic for managing bronchiectasis, and new generations of antibiotics being developed.

Here is an excellent introduction :
https://www.ntminfo.org/wp-content/uploads/2019/09/Guide-for-Patients-with-NTM-Infections-2019-09.pdf
And, I keep using the term airway clearance - here is one of the best explanations of why and how we do it:

@strong4130 hello, you have found such a helpful place for shared support and information.
It sounds like you and I have some similar issues (except that I'm 69, not 42 :-)). I too have inflammatory bowel disease, successfully treated with the biologic humira for 8 years. There is an association between bronchiectasis and IBD which is not well understood, particularly Crohn's. And bronchiectasis can be triggered by an autoimmune process too. Many of us with one autoimmune condition end up with other autoimmune issues.

Humira and other biologics do suppress immunity as I'm sure you know. My bronchiectasis was asymptomatic until I was diagnosed with MAC almost a year ago after developing a chronic cough. No other symptoms, so despite a mild case my now-doctors (bronchiectasis/MAC specialists) recommended treatment because immune modulators may make us more vulnerable to aggressive progression of the MAC. And no one wants to take me off Humira. I did not have to think too long to agree with this plan.
The dx of MAC/bronchiectasis is a shock. I wasn't even referred to a pulmonologist for my bronchiectasis & only decided to get to one on my own steam to get an opinion on going on Humira with bronchiectasis (I was cleared). I had no idea until MAC was suspected about airway clearance & best practices in treating bronchiectasis, and I don't think my then-PCPs did either.

It may not feel like it now, but it sounds like you may be fortunate in getting diagnosed relatively early in the process and able to develop your best plan together with your doctors. And this is a time when there are more studies and growing interest.

Keep in mind that it is folks with issues they need help with who will post online the most. (When I was considering a smart vest, I was discouraged by the problems I read about here so I posted asking if there were any positive smart vest experiences & got several enthusiastic & reassuring responses (and my vest story is positive too).

MAC is challenging to treat but it IS treatable and the stories are not all bleak as you will see here. My docs tell me that most people tolerate the antibiotics well, and so far, in month 5, I have no side effects other than mild nausea for a couple weeks after I started.

So give yourself space to process what is happening and know bronchiectasis and MAC are different for everyone. A poor prognosis is not at all inevitable!

Keep us posted ok?

Sue,

Thank you so much for your reply and for the information you shared. I read through every word of the info pamphlet, and your words were very helpful. I’m still scared, but not as much and am feeling a lot more hopeful.

Sincerely,
❤️