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MAC + BX diagnosis has me gobsmacked

MAC & Bronchiectasis | Last Active: May 6 6:21pm | Replies (9)

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@sueinmn

@jsblair Yes, the term "gobsmacked" quite possibly described how many of us felt when diagnosed!

And no, the doctors didn't miss anything in your annual exams - many people who are physically strong have "walked around with" undiagnosed bronchiectasis for years - until weight loss, fatigue, and/or a persistent cough led to imaging. In my case, it was thought to be "persistent asthma with seasonal bronchitis" - until I was so ill the doc was SURE I had pneumonia and sent me for a lung x-ray, which revealed evidence of bronchiectasis and widespread lung infection. When sent to the pulmonologist I was in a state of shock - and ended up on antibiotics for pseudomonas then MAC for almost 2 years.

The good news is, with airway clearance (incl 7% saline nebs a couple times a week) and healthy living, I have been off antibiotics for almost 4 1/2 years with no sign of recurrent infection. And, most days now, I only clear less than a teaspoon of mucus in 24 hours.

It sounds like your efforts may have knocked down your infection to the point where you are producing little mucus. I read your list - you may want to settle on just one mucus thinner and try just one airway clearance technique per day (I vary mine between huff-coughing after brisk walking or cardio, Aerobika, and post-yoga downward facing posture. )

Now let's talk about gardening. My MAC almost certainly came from gardening in soil contaminated by feral chickens and the flocks of birds we feed at my winter home in Texas. But I also have extensive gardens in Minnesota. Here is what my ID doc said to me "MAC is EVERYWHERE. You cannot avoid it without living in a bubble. So be prudent and do what you love. Bronchiectasis is a disease you live with."

So, I no longer use peat moss, I wet all soil before working in it to minimize inhaling particles, I leave the dumping of mulch, hauling of compost and sacks of soil to a young helper (easier on the body too!) Then I dig and pot and putter to my heart's content while wearing gloves, and if breezy, a mask. When finished my garden clothes and shoes stay in the garage until laundered. After more than a short session "in the dirt" I also shower when I go in.

According to my PCP, for people with chronic conditions like Bronchiectasis, i's really important to have an adequate BMI in case infection flare again.

Have you shed some of your fatigue, and regained some of your lost weight? And have you thought about how you might safely "play in the dirt" again?
Sue

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Replies to "@jsblair Yes, the term "gobsmacked" quite possibly described how many of us felt when diagnosed! And..."

Sue, I find it very interesting in your reply you stated only trying one mucus thinning item. Have you had experience or heard of this possibility being better than multiple mucus thinning treatments? I know and understand you’re not a Doctor, but I believe experience is a wonderful teaching tool. Furthermore as far as healthy diet, do you know of any particular literature or website to get some guidance on on foods to have while fighting Bronchiectasis.. thank-you. God Bless all you Mentors for the help you provide us.