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Extreme fatigue with MAC

MAC & Bronchiectasis | Last Active: Oct 29, 2022 | Replies (310)

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@soflo

@windwalker Hi Terri, I was responding all over the place earlier sorry about that but now I think I got it lol... responding to your questions I live in South Florida, I do have both mac/bronc and right now I have difficulty breathing at times, I don’t have a cough but I do cough up mucus in the morning, fatigue, brain fog, pains in my rib cage, and over the years most of the symptoms were blamed on menopause. Thank goodness for my cardiologist saw something on my lungs which started this journey. A CT of my lungs shows nodules. So I started the 3 antibiotic treatment for two weeks but as I said I don’t know that my body can handle
It. My doctor will understand when I tell him I should get a nebulizer saline flush? So Terri I am very nervous as to which path to take because I just don’t know. I want to be proactive and I’d like to know naturally what else I can do to keep my lungs healthy from deteriorating even more. This site is amazing and I am so happy to have stumbled upon you all 🙂

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Replies to "@windwalker Hi Terri, I was responding all over the place earlier sorry about that but now..."

@soflo, I am so glad that you found us too. This is a great commumity here. Good job, I am now getting your messages direct, but others can still see and read your posts. Which is a good thing, as other people may jump in with their thoughts. Nodules are not the same as cavities. Cavities are actual holes in the spongy lung tissue. Nodules are sort of like tumors. Those can come and go, they can get larger and smaller. I have 2 small ones that have remained unchanged for 20 yrs. They are not colonies, not sure what is inside of them. I will have to look into that. I was diagnosed in 2005 with mac and I was sick as a dog. The first dr wanted me on the 'Big 3', my gut feeling was not to do it. I got a second and third opinion. The two last drs said they wouldn't do it if it were them with mac. I chose not to because of the toxicity of those, plus, I was told it comes back 50% of the time. I didn't do any treatment at all which was a mistake (but I didn't know any better then). Consequently, my lungs did deteriorate further and I lost a lot of lung tissue. I feel like had I been treated like I have in the past five yrs and done nebulized saline; I would be in a whole lot better shape today. I will continue this conversation in a new text because this one is getting long. My next text is about my treatment plan that has been working...

@soflo, The saline is not a flush that I am talking about. Although there is a saline 'flush' procedure that involves a bronchioscope. It is kind of invasive; it requires a twilight anesthesia. I think it is called a bronchial wash. The saline treatment I am speaking of is a prescription of 7% sodium chloride. It comes in individual vials that you put into a nebulizer and inhale the mist. It irritates your lungs (it is upposed to) and causes you to cough up phlegm. It also thins the phlegm so that it comes up easier. Thin phlegm prevents mucous plugs and mac and others from colonizing our lungs. You will have to be proactive in your treatment because many drs don't know much about treating this disease. You may need to ask or demand some things when it comes to your treatment. Doing the saline nebs are just good lung hygiene and should be done by all of us with mac and/or bronchiectasis.

@soflo, Good morning. I am at a medical conference of sorts today at the Mayo in Rochester., and I was talking to someone about 'Nodules'. I was told that just about everybody has nodules and that there is usually nothing to them.

@windwalker So glad you have a chance to ask questions and share the expert answers with us. You are the perfect person for this job. So appreciate what you do.

@ling123 Thank you Ling. I appreciate all of your contributions as well. It really does take a village.