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And I’m convinced 7% nebulized saline did the trick. (Accompanied by percussion vest vibration) And this forum is the place I learned of “The 7% Solution.“ “Don the indebted.”
@sueinmn Wow that is interesting about the cold, I normally cant stop coughing in the cold.I might give it a go.
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Hi Heather! Yeah, cold air brings on bronchial spasms for me too. My airways just close up and cause me to cough and cough. I plan on using a mask whenever I am out walking the dog this winter. That way, the air I breathe in will be pre-warmed, How have you been doing, and what have you been doing?
dee65, most drs prescribe doing the nebulized saline twice a day, I used to be religious about staying on schedule, but recently went to once a day. I did it because I am so exhausted by nightfall that I tend to skip that dose. I am paying the price now for doing that. Something is trying to infect my lungs and I have a lot of inflammation going on in them. I am now coughing a lot, whereas I had not coughed in four yrs. I am also very short of breath. I am really trying to be a good girl and get back into the habit of twice a day nebbing with saline. I would be better with it if it were the only thing I had to nebulize. I have to do three vials in a row of albuterol, saline, then tobramycin. It takes a lot of time to go through all three and seems unsurmountable when you are exhausted. Maybe this will help you to realize the importance of doing your saline twice a day: would you only wash your hands once a day? It is important to clean our lungs. I am doing a saline treatment right now as I type this. I just coughed up sputem with a turquoise fiber in it. I must have breathed it in. Can you imagine if that had been left in my lung? That and other garbage? I am sorry that my post has taken a gross turn here, but, the reality is; is that our lungs don't self clean like normal. Keeping them cleared with saline may help a great deal in staving off infections.
@windwalker yes I know how you feel with fatigue, I was also only doing the morning saline and started coughing alot, I have been rediagnosed with MAI in my lower left lobe (wondering if thats the last lobe saline reaches). I am starting the meds again(what a pain) the MAI has been tested for the big 3 and is susceptible to them, thank goodness, I asked about other drugs but she said they have worse side effects, I mentioned they may be faster but she wasnt keen. Sorry its not good news, hope you are feeling better soon.
I noticed that after going inside early evening I started to gasp somewhat but after resting it slowed down in doctor’s office.
@windwalker @heathert Terri and Heather…. I am so sorry to read that you are both having difficulties with infection again. I am wishing you both the best. Good luck. <3 Kate
Hi Kate thank you so much, I have kind of known for 6 months as my cough returned but it has been confirmed, the pills are just so much fun! Take care Heather
Both – I am in control 90% of the time, clearing during/after nebbing. But occasionally I still get coughing fits – usually it feels like a mucus plug is caught in my throat & I stop what I am doing & huff cough until I get rid of it.
@kathyhg – I carry water & "Gin Gin" hard ginger candies – both help to stop a cough when I am out & about unless I have that "stuck" feeling. When I do, I usually excuse myself & cough it out, often in my car. Regular physical activity helps me get the mucus out. This sounds really crazy, because cold air is usually a problem for me, but getting out in the cold and moving help clear my lungs when I go back into the warm. Even a short walk helps.
@migizii. As a patient who has difficulty removing mucus, the twice daily nebulizing/vest therapy is the primary way I have to get any mucus up. During the day, is usually feel like something is stuck in my throat, have a dry cough, and on “lucky” occasions can cough up mucus. However, the very fortunate part for me is that I have not faced a MAC infection yet. I don’t know why, it I feel blessed. From what I read here, the 7% saline maybe the key.
@migizii …Just read your post and I'm not sure if you know that 'something stuck in your throat' (usually feeling like a lump) is a classic symptom of acid reflux or silent reflux. Not sure in your case but thought I would mention it. Kate
I was diagnosed 3 years ago with cavitary disease and MAI Avium. I had surgery a year ago to remove parts of my right lungs with cavities and infections but have never really recovered. The surgeon said that not enough of the antibiotics get to the lungs to treat that and bronchiectasis. I still have MAC in 1 out of 3 sputum cultures.
I have VERY high CRP (inflammation) #s so some infection is raging.
I have terrible allergies to antibiotics and am really afraid to start the protocol. I'm so afraid when I read the side effects and the 2 years needed to possibly put MAC in remission.
Can you share your experience and knowledge with me?
Thank you Kate. I don't think I have a mac or pseudo infection, just something trying to get me. I went back on the toby just in case.
Hello Ellen. I see that you just recently joined our group. Welcome! I am sorry to read that the lung surgery did not fix the problems with your lungs. Did you have it done at NJH by any chance? Here is a list of other group members that also have dealt with MAI. You can go to their profiles and read all of their posts, or you can reach out to them and ask questions. Here they are:@brigby, @jammer, @irene5, @poodledoc, @Cathln. Maybe after exchanging thoughts on treatment plans with these other members; you can come to a decision on how to proceed for yourself. Read and learn all that you can about your disease. Knowledge is power!
Awe crap Heather!!! I am sorry sweetie. You are a soldier, and you will kick it's but again, I just know it!Sending you hugs, love, and healing vibes.
Heather, do you know what exactly you have been tested positive for? Is it mac, mai, or pseudo?
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