Is treatment for Mac and airway clearance really necessary

Posted by jillcrawford @jillcrawford, 3 days ago

I am 75 years old and I’m Weighing treatment options for Bronch and Mac
I would appreciate the input of older members of this group
I have had a series of -pneumonias for two years and I was recently diagnosed with Mac. Also Ucla did two surgeries during this time remove a huge Hernia and the then a sinus surgery
I have had a series of pneumonias and it felt like most of the year was one big exacerbation. I started airway clearance two months ago, and I absolutely loath it because it robs me of so much energy and time that I cannot do many other activities. Otherwise, I’ve been very active and good shape and have traveled extensively before all this
Here is my big question. At 75 life expectancy average is for women are about 80. I’m really weighing the benefit of starting Mac treatment and continuing the grueling airway clearance against just letting nature take its courses I …living my remaining life as best I can at least what remains of it
during the past two years, the bronch spread from one lobe to three, but I was not treated with airway clearance until two months ago. I also had an abscess and necrotizing tissue last year and my upper right lobe is a mess. I have it in three lobes… Osats and pulmonary function are OK
So here’s my question to those of you that are older
Do you think all this treatment is worth it?
I can’t imagine being on three airway clearance 2x day or two forever. Also starting treatment for Mac is a big commitmentShould I just let nature take it’s course Maybe I’ll be lucky and I won’t have too many recurrences. Otherwise I’m very active and healthy. I am mostly asymptomatic between recurrences.. no respiratory symptoms except for runny nose no cough ever, no fever etc.
However, I do feel somewhat ill a lot of the time from weakness and severe muscle pain perhaps Caused by ongoing infection, inflammation or mac.. I don’t know.
I would greatly appreciate your thoughts as I am wrestling with this decision.

I would love to hear from anybody out there who is older and has considered these issues
Thank you so much, Jill

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pacathy | @pacathy | 3 days ago

It sure sounds like you've been through the wringer with your health issues the past few years. No wonder you're tired of it.

You said you're very active, have good O2 sats and PFT's. With those, I don't think I'd throw in the towel yet, but I recognize these are individual decisions.

I mostly don't think of myself as old, but the numbers don't lie and I am. I have BE and don't have MAC, but CT's looked like I did. It took about 9 months to get it ruled out with negative cultures. I spent some anxious time while waiting wondering about the decisions I'd make.

You airway clearance sounds pretty exhausting. What are you including now?. You might consider ways to shorten it. My first nebulizer was slow and took forever. I bought a more powerful one when I started 7% that really decreased the time. My albuterol takes less than 10" now. I don't bring up sputum and use the 7% to try to prevent exacerbations. I use 1/2 vial now, though if I were bring up mucus, I'd use it all. Some here are using a Pari e-flow (I think that's name) that is much faster than mine. Some also use the aerobika in line with saline, I think. I think a couple also limit aerobika and huff coughing to 20." Not knowing how much you bring up, I'm not sure what would work for you, but many of us tweak airway clearance to make it work with our lives. Something to consider. Also, I do it while I read emails, check news and this page in early a m.

What I've read about the big 3 sounds tough. Reading here, it sounds like people tweak it a bit, too, with some starting it 1 med at a time or doing it 3 days/week. Some do "watchful waiting" as they try to stabilize it with airway clearance. Just some ideas to consider.
I with you the best as you make decisions.

irenea8 | @irenea8 | 2 days ago

I wonder what it is about AC that you dislike so much? Nebulizing with saline and Airway Clearance is recommended by all BE and MAC experts as being extremely important. Letting things take their course would be so much more unpleasant than nebulizing and AC. Perhaps you can find ways to make it more tolerable? I am 74 and I nebulize twice a day with saline and I used the Aerobika and postural drainage. For me what really helps is to watch TV (something attention grabbing like a good movie or series) while I nebulize. I wear headphones so I can hear the TV over the compressor. I just relax and surrender to the procedure and the time it takes. Since it makes a huge difference in getting up the suffocating mucus, I look forward to it. If I were you I would find some ways to make it tolerable or even enjoyable??

pled | @pled | 2 days ago

I know how you feel. I'm 77 and my most recent MAC infection was five years ago. I spent a lot of time resenting the demands and the insults of airway clearance. How embarrassing and unpleasant it was to me to have to sit with this loud machine and a tube in my my mouth and be bored out of my mind, and then have to try unsuccessfully to bring up mucous by uncomfortable coughing. This forum helped me to see the value in keeping my lungs as clear and showed me many different ways to skin the cat. I now try to use my nebulizing time by reading a good book, listening to podcasts or watching watercolor painting tutorials. Do I wish I didn't have to do this? You bet. But as my mom used to say, "If wishes were horses . . . "

cahcb4769 | @cahcb4769 | 2 days ago

You couldn’t have said it better. That is exactly how I feel! I’m 74 and have had BE and MAC for 4 years. Everything is slowly getting worse. I did try the big 3 and landed in the hospital from side effects. Recently my Dr. added ethambutol, back in the hospital. Went off it a couple of days ago as it made me so sick I couldn’t eat! Became weak and dehydrated. Moral of this story and you nailed it for me, I’m going to stick with what I’m doing, nebulizing with 7% saline every morning, and then I have to nebulize with an inhaled antibiotic- I feel these two are helping get “stuff” up and that’s fine with me, but I don’t feel well at all, I never really did all those 4 years. Did not qualify for any surgery, so, I’m now going to “let nature take its course” because I can’t handle all the pain that comes from all the medication etc..I have wonderful friends, great grandchildren….my pulmonologist finally said at my last visit that I roughly have about 3 years so why kill myself in the meantime by feeling sick every day. Thank YOU for unknowingly helping ME! My new decision - keep doing what I can tolerate and leave the rest to the creator.