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Sue, Volunteer Mentor (@sueinmn)

Early Christmas gift - stopping the "Big 3"

MAC & Bronchiectasis | Last Active: Jan 29, 2020 | Replies (27)

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@sueinmn

@rits Thanks, Rita - I am doing much better after 5 weeks. My gut issues are resolving (still on the probiotics) the stomach pain is beginning to decrease (primary had me do a course of omeperazole, which is helping. I also temporarily stopped the NSAID for my arthritis.)
The 7% saline neb seems to be keeping the mucus moving, with the occasional levalbuterol neb or inhaler on the bad days. And no chest pain or colored mucus.
The BEST news is that the fatigue & fog are beginning to lift! I still "crash" but it is quite a bit later in the day than before. And I can go for 2 active days or 3 moderate days before I need a recovery day. It used to be one on/one off. Part of it is that without the stomach issues, my sleep is much better. My activity tracker was showing my average restful sleep while on meds was under 4 hours (out of 8 hours in bed.) Now I am averaging around 5 - 5 1/4 hours of good sleep a night.
But with this stupid disease, it's always something - still no appetite to speak of nor any weight gain. And stopping the NSAID has me hobbling around, and hands not too useful...
But friends just arrived here in our winter home who have had a much worse year than me, her abiding philosophies are "I'm still on the right side of the dirt" and "I can still enjoy the weather - even if it is from a chair on my patio."
I hope they can somehow alleviate your digestive issues - my daughter made them test me for "c diff" because it can be a consequence of long-term antibiotics, have they checked you? My ID doc stopped the drugs after 18 months because he felt the MAC was "controlled" and we had reached the tipping point where the cure was worse than the illness. He also used the improved CT and the lack of cough in deciding.
Sue

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Replies to "@rits Thanks, Rita - I am doing much better after 5 weeks. My gut issues are..."

Wonderful news, Sue. I hope you continue to improve.