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3 days ago · It’s half past nine in Dallas in MAC & Bronchiectasis

At my house, we call it “Time to Make De Donuts”. Then when I finish, “I made De Donuts.” (Think Winchell’s Donut’s commercial, circa 1974.)

The only thing I hate more than 2x per day airway clearance, is being sick.

Fight on!!

Wed, Jan 15 10:35am · So many questions: How do I clean our home to prevent reinfection? in MAC & Bronchiectasis

Hugs to you both!! The caretaker role is a tough one!

Tue, Jan 14 9:31am · So many questions: How do I clean our home to prevent reinfection? in MAC & Bronchiectasis

Prayer without ceasing is wonderful! Jesus is the only thing that can sustain you.

Take heart, I have m. Abscessus in my lungs and sinuses since 2015, and with airway clearance, daily Gentamicin & Pulmicort taken as an inhalants through my Navage, by God’s grace have regained the ability work full time and only have 1-2 “exacerbations” that get me down in bed for days/weeks.

Nov 13, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@kathyhg Sorry you are experiencing nausea. You are wise to have regular checks with a GI specialist. I have Bronch, and I am colonized with m. Abscessus in sinuses as well as lungs. I’m on Gentamicin as a daily maintenance antibiotic, taken as an inhalant. Have not had to start “Big 3”, by God’s grace and daily airway clearance. My docs are at Stanford.

I have significant, periodic, bouts of GI pain, irregularities, and at times nausea. Been scoped from both directions, all they see is some areas where bleeds have healed, and diverticulosis. So they’ll Diagnose it as a bout of “gastroenteritis”. The symptoms are becoming more frequent, and the bouts last longer: the last one was 3 months!

After years of trouble with constipation, I take Miralax daily, and it has been a life-changer to have a daily BM! Who knew what joy?? HA!

They checked me for ciliary dyskinisia, and I don’t have it. They’ve done genetic testing for CF, and I do have a questionable result so they will explore that further soon.

The ENT accidentally hit a nerve during my July Endoscopy, and I had 4 weeks of facial pain….and non-stop nausea. The doctor reminded me sometimes pain can cause nausea. It passed.

I still work full time, I was a college athlete, still exercise daily and enjoy grandbabies, the best medicine of all. Would have never dreamt I’d be alive after being deathly ill in 2015-2016.

I share all this in hopes of helping you or anyone else hang on, have hope, and in hopes we can share clues to help our doctors put the pieces together and make things easier for those who come after us. Blessings, Brenda

Nov 2, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@rits yes I have had aspergillus show up as well. I’ve never had a bronchoscopy

Nov 2, 2019 · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@rits Hello, I had Mucor show up in a sputum sample too, but doc thinks it was just a contaminant (since I’m not deathly ill). Let’s stay in touch.

Oct 11, 2019 · Percussion vest in MAC & Bronchiectasis

@gj53 i do find the Afflovest helpful, and it is portable.