Did your MAC symptoms improve once you started Big3?

Hi Laura. Yes, anxiety is a very common aspect of MAC and bronchiectasis and, of course, the treatments for them. But I also think that, as you continue with treatment, you simply get used to it, you're able to predict what will make you feel better or worse, and you have fewer unknowns to be anxious about.

Devon Smith, a psychologist at NJH, recommends the Psychology Today Therapist Finder as a tool to find someone experienced in chronic disease to provide support and guidance. We stay in close touch with our doctors and medical team, adjusting dosages and drugs to relieve physical symptoms - let's be willing to show the same care for our mental well-being by seeking professional attention when we need it. Sending you calm and healing wishes.

Hi Laura -
Thank you so much for your honest question. I experience lots of anxiety - on and off. I was diagnosed just over two years ago with BE and MAC, and I'm in the "watch and wait" phase, dping my airway clearance and treatment for newly discovered silent GERD. I experience pretty consistent anxiety about whether the disease is getting worse, what will happen if (and when?) I have to start antibiotics. I'm also anxious about the radiation exposure from the regular CT scans. I appreciate Toni's sharing about finding a therapist well-versed in chronic disease and may look into this. I also recently heard about self-compassion training, and am looking into doing that as a way to cope with my ongoing anxiety. I had always been a healthy person, and the diagnosis has made me think about my mortality with a level of frequency that troubles and saddens me. I would love to find and stay in the "positive thinking lane," but so far it is eluding me. I'd love to hear how others have accomplished this! Thank you to everyone for their sharing on this forum. It is a huge help in my life.
Jill

Winema, If you go on meds get baseline hearing and eye exams. My pcp sent me to a local pulmonologist. This pulmonologist said she treats hundreds of people with bronchiectasis (red flag, I live in a small NE town) She gave me an acapella, inhaled steroid and a sputum cup and sent me on my way. My appointments were cancelled several times, they lost blood work done there and no one showed me how to use other airway clearance. She also told me I am going to get way worse and this would never go away. Sent me to infectious disease dr. who claimed he treats many MAC patients. He ordered sputum induction at the hospital and I was Pos. for MAC. He told me treatment is far worse than disease but I have to do the meds. Asap. or the MAC would eat my lungs. He never had me do a baseline hearing exam or eye exam. I asked him to do sputum culture 8 months into treatment …. Only because I finally found this site and was getting educated. I got super sick on a couple meds. and he wasn’t patient and threatened to do iv infusions in the office if I couldn’t handle what I was taking.
After I found this support group I asked about doctors that treat this in my area and was given a name of a doctor that specializes in Bronchiectasis. (Thankful to Linda E) What a huge difference and wish I found him and this support group in the beginning. I don’t have ID doc, just pulmonologist. He is kind, thorough, patient, I feel listened to and he knows his stuff. I now nebulize 2xday and feel like I am supported. Lots of great advice and support here. Rosemary

Hi Laura -
Thank you so much for your honest question. I experience lots of anxiety - on and off. I was diagnosed just over two years ago with BE and MAC, and I'm in the "watch and wait" phase, dping my airway clearance and treatment for newly discovered silent GERD. I experience pretty consistent anxiety about whether the disease is getting worse, what will happen if (and when?) I have to start antibiotics. I'm also anxious about the radiation exposure from the regular CT scans. I appreciate Toni's sharing about finding a therapist well-versed in chronic disease and may look into this. I also recently heard about self-compassion training, and am looking into doing that as a way to cope with my ongoing anxiety. I had always been a healthy person, and the diagnosis has made me think about my mortality with a level of frequency that troubles and saddens me. I would love to find and stay in the "positive thinking lane," but so far it is eluding me. I'd love to hear how others have accomplished this! Thank you to everyone for their sharing on this forum. It is a huge help in my life.
Jill

Hi Jill, Chronic illness does have a way of changing our thinking, doesn't it?
When I was first diagnosed with MAC and Bronchiectasis, whether or not to treat wasn't even presented as an option - I was so ill I couldn't even walk 1/2 block without stopping, and I had been coughing non-stop for over 6 months - I had both MAC and Pseudomonas as well as uncontrolled asthma. To say I was miserable would be an understatement. I was so happy to find Mayo Connect, and the wonderful people here, it was a lifesaver.

I don't know your age, but the Aging Well Group discussions are really applicable and helpful to anyone with a chronic condition - it helps us find new ways to think about "what's next?" This discussion, started by the ever-helpful member @edsutton might be a good place to start reading:
https://connect.mayoclinic.org/discussion/happiness-for-old-folks/
Another thing I remember vividly from my first pulmonologist is "Bronchiectasis is a disease you live with, not die from. Do your best and get on with your life." I thought it was a callous thing to say when I was so sick, but he was a crusty old dude... This has been repeated a number of times, and in a number of ways, by my primary, ID doc and 2 subsequent pulmonologists over the past 7 years.

And here I am, still hanging in there - taking a break from major garage cleaning with my husband to have a telehealth visit with my two pulmonologists.

PS My Mom had Bronchiectasis and MAC for years, never took antibiotics except for exacerbations, and died of a completely unrelated disease in her mid-80's. I guess that helps me believe in what the doctors say ( and management, with 7% saline & airway clearance is so far advanced to 15 years ago!)

Hi Barbara
I had the pseudomonas twice last year and it was successfully, treated with clarithromycin meds and colymycin inhalation. But I also had 2 Bronchiectasis flare ups April and August and needed IV Tasobactum for two weeks at home with nurse visits daily to change the pump.
I am now more vigorous with cleaning and disinfecting all my equipment, including new tubing, filters/ mouth pieces for the Pari Boy nebuliser.
Like you I am avoiding the BIG 3 as my ‘ quality of life ‘ is ok for age 77 and I can’t see the benefit of the BiG 3 at the moment versus those ghastly side effects, eating patterns, over the counter meds etc.
I am worried about getting cavities or a faster growing MAC but now just getting on with my life and family responsibilities.
I guess I will have another CT and sputum for path ( but MAC in the UK takes 15 weeks to incubate) before I see the Respiratory Doctor in February.
Let’s be positive and see if we can make it without the Big 3 or 2 for another few years..
SP

Hi Sue, I appreciate your knowledge and words of advice. It brings comfort hearing your point of view and how you’ve managed your care. Did I understand that you were able to get off the antibiotics and manage your treatment with nebulizing the 7% saline only? I’m hopeful that I will see good results with nebulizing without the antibiotics for awhile.

Hi SP, interesting that you are in the UK too. I live in London. I am growing Mac and Abscessus at the moment. I was diagnosed back in Dec 2022 had 14 months of hell on the big 3 but stuck it out mainly because I knew no different! Have underlying bronchiectasis - my lungs are what I would describe a pebbledashed! I cough most days, get breathless, stay active, still work but I am very thin. I find it all so frustrating going from an energetic person to someone who is in bed by 8pm and asleep at 10pm. The fatigue is awful but I keep going. Watch and wait is the option at the moment after a year being clear I am back to square one. It is annoying that the treatment is the same as what people with TB are given - at least they recover. The wait for appointments is not good and so many have been cancelled. My kidneys were damaged from rifanpacin. Anyway I am going to battle on and keep going with airway clearance. I have to wait until July to be checked that I can tolerate a saline nebuliser! Wishing you well.

Yes, I was taking the antibiotics 7 days a week, and still had positive cultures even though my lungs looked better on CT. So for the past 5 plus years I have managed with saline, airway clearance and Symbicort. I add levalbuterol and budesonide if I have an exacerbation. My most effective airway clearance is from vigorous walking, yoga or yard work followed by huff coughing and sometimes Aerobika.

I had a visit with my pulmonologists this week and they said it must be effective since there are no mucus plugs or infection signs in my most recent CT. Now we are working on getting an effective sputum culture to confirm still no infection hiding in my lungs.