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Posts (11)

Sun, Mar 8 12:01pm · Clearing lung technique I found by accident in MAC & Bronchiectasis

Well said – I second that @alleycatkate ! Thanks to @windwalker (and you too!) & all those who have been going through this before us and are willing to share their journey & discoveries! I can't do 7% yet (hemoptysis issues), but can now mix my 3% with the 7. When I started this bronchiectatsis/NTM journey, my infectious disease doc told me…" you WILL treat. I don't have anyone that doesn't treat within at least 3 years." Well, I am now at the 3 year mark (diagnosed, but surely had it much longer), and instead of being closer to treatment, I have improved greatly in health & strength. Yes, as they tell me, I meet the "clinical" requirements for treatment, and I may have to some day, but I am ever thankful that God has blessed me with this time of no treatment – and he used this group to inform me and arm me with tools to change the direction of my journey. I have zero doubt that, without the things I have learned & implemented from everyone here, I would have fulfilled my ID doc's prediction. So thank you, ALL!!

Sat, Mar 7 9:07am · Clearing lung technique I found by accident in MAC & Bronchiectasis

The only thing with postural drainage is to be careful if you have GERD – I can't do it because of that, but would be an effective method for me too otherwise.

Dec 12, 2019 · 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!

Dec 11, 2019 · 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.

Jul 14, 2019 · Disinfecting nebulizer in MAC & Bronchiectasis

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

Jun 19, 2019 · 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.

Jun 18, 2019 · 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.

Mar 15, 2019 · 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.