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Bronchiectasis: New Diagnosis

MAC & Bronchiectasis | Last Active: Apr 15, 2023 | Replies (382)

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@windwalker

Hello Joann. I can totally relate to every question that you asked here. In 2005,I had to leave the workforce at the age of 48. I was just too ill to drag myself in to my workplace every day, and was also diagnosed with bronchiectasis and mac. I went on disability in 2010. My lung function was so measurably low that I had no trouble qualifying. That was the yr I had time to research this disease and seek good medical attention. I lived in total misery until 2013. I had the back and chest pain, the constant coughing, acid reflux burning my esophagus, shortness of breath, intolerance to smells, rapid and drastic weight loss, lack of appetite, sleepless nights, night sweats, and extreme fatigue. I felt so wretched; that I had my Living Trust drawn up. Seriously, I felt like death was near. I started treatment at Mayo Clinic in 2013, and that is when my quality of life improved ten-fold. My mac and pseudomonas got properly treated and the regular 7% saline treatments also helped to improve my lung function. I was fortunate; my mac went negative after one year, and my pseudomonas went negative after 1 month. I stayed on prophalactic antibiotics (preventative measure) for 7 more yrs to keep this away. I was just taken off of them two months ago. What may have also helped me is that I moved away from a 'Hot spot' (Az) for mac to an area where my water has tested negative for it (SC). At one point, I could not walk 10 feet without being out of breath and needing to sit down. Now, I can walk my whole neighborhood and ride my bike for miles. My pain is gone, as is my cough. I am still very short of breath, but I live with it. At least I feel good most of the time. I am lucky, because for some, this disease is a never ending battle. I want you to know that there is hope for getting or feeling better again. I am curious if you have started implementing any of the suggestions you have read on this site yet?

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Replies to "Hello Joann. I can totally relate to every question that you asked here. In 2005,I had..."

Hi Terri,
Thank you for sharing your experiences. Sometimes I feel I’m at the end but I’m not ready to stop working I still have plenty of years to go but just getting into the shower is an effort. I have tried postural drainage which I have not noticed a changed yet but maybe because my pseudomonas is back so I’m back on the gentomycin and albuteral in the nebulizer, I still take mucinex 2 tabs of mucinex twice daily, along with advair and all my other meds. I’m going to have my partner try doing the clapping this weekend to see if that gives some relief. Where do I get this from?
The dr told me it’s everywhere in water soil etc and I’m more susceptible that people without health issues. Sounds like you are telling me certain geographical areas have a higher risk.

Terri
Do you mind sharing what the drs did to get rid of the pseudomonas?
Joann

Thank you for all the information of what you were going through. This is exactly every symptom I currently have. What antibiotics got rid of the pseudomonas? My culture was at +3 and now at +4 and am currently on gentomycin. Appreciate you sharing.
Joann