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Posts (9)

2 days ago · Negative sputum results without treatment in MAC & Bronchiectasis

I read the same thing @lorifilipek . I've not found that they know why or if there is any real correlation – sort of like why do many with our condition tend to be tall, thin, mitral valve prolapse, "older" women….just a coincidence, or some correlation or connection? So many questions!

3 days ago · Negative sputum results without treatment in MAC & Bronchiectasis

Wanted to respond as someone who also has had bouts of coughing up blood. I also was diagnosed after bouts of hemoptysis. I have mild bronchiectasis with MAC, and I seemed to cough up blood about every 4 to 6 months. I started on NAC 600 mg twice a day as well as 3% saline (generally once a day, or twice if I am exposed to a cold or having worse symptoms). I have not had any bouts of hemoptysis in over 6 months, so the NAC has at the very least not made it any worse – and I feel it has helped with my airway clearance and actually reduced the bouts. We'll see if it lasts, but I would call this an improvement! I wish my pulmo believed in retesting for MAC because I would really like to see if I am still positive, or at least to know if the counts have decreased.

Sun, Jul 14 4:47pm · Disinfecting nebulizer in MAC & Bronchiectasis

I toss in baby bottle sterilizer with distilled water every day.

Wed, Jun 19 9:21am · What now? What else can be done? in MAC & Bronchiectasis

You would think a blood thinner would make a difference, but I'm sure your doc has taken that into consideration. Please keep me apprised on your concentration & how it goes for you. I'm wondering if I may just bleed occasionally with any irritation, and as @windwalker said the 7% has an effect on MAC so maybe I could try it? At least the 3% does thin the mucous and it definitely helps me cough that up.

Tue, Jun 18 7:02pm · What now? What else can be done? in MAC & Bronchiectasis

Or no 7% if you are a "bleeder". I don't think my lungs would be considered necessarily fragile shape (no cavities, not bad damage, good FEV1, never had other infections other than the active MAC, and some nodules), but I tend to have bleeding episodes so they won't let me do 7%. Discouraging, but I guess better than maybe causing more bleeding.

Fri, Mar 15 10:32am · health at diagnosis in MAC & Bronchiectasis

Just a thought about the 7% saline. I have mild bronchiectasis, but I also seem to have the occasional hemoptysis like you, and my docs don't want me on the 7% because it is just a bit more irritating to the tissues and might cause the bleeding, especially in someone more prone to that anyway.

Wed, Feb 6 10:45am · coughing up blood. in MAC & Bronchiectasis

I don't know about "normal", but my pulmonologist says some people seem to be more prone to that. I have coughed up blood several times – diagnosed with bronchiectasis & MAC. You should definitely notify your doc if you haven't. Mine wants to know if it happens, but concerned only when the amount is "large" or it won't stop. He is not concerned with just a couple tablespoons that tapers off. It is still a scary experience for me! But it doesn't necessarily mean your condition is worse. If mine tapers off, my pulmo still wants me to do my airway clearance, huff coughing, and saline.

Oct 10, 2018 · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Thanks so much for the replies!! @flib, I think you're right, long lungs is probably not a compliment, but it did make me laugh. Sounds like sticking with the 3% is probably good for me. I haven't posted here much, but I want to say what a great place it is to come and gather encouragement and information. I am very embarrassed to say I struggle with health anxiety, and coughing up blood just sends me into that fear – even though I know it is just sometimes a symptom of my MAC, I can't seem to make my anxiety fully accept that. Same way with the fatigue sometimes, I'll think something else must be horribly wrong and I'm dying and then later in that same day I can feel better, get up and accomplish things and decide I'm probably not dying after all. What a hot mess!!!