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ann0616 (@ann0616)

health at diagnosis

MAC & Bronchiectasis | Last Active: Mar 19, 2019 | Replies (22)

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@ginak

@ann0616 I was also diagnosed from a CT scan. The not so short story is, I originally had a CT scan in 2013 because I had an X-ray to check my heart and it showed a shadow in my lung, so they sent me for the scan. I was told then by my pulmonary Dr that I just had nodules and we would just watch them. Three years later, I coughed up blood, which she said was due to a large nodule in my upper left lobe. I had surgery to remove the nodule and biopsy it. Good news – not cancer, but MAI. That’s when I started seeing a pulmonary Dr that specializes in NTMs and he told me I had bronchiectasis. I also, had no symptoms. I was originally told 10 years ago, that the throat clearing and cough I had was due to acid reflux. The specialist told me it’s the acid reflux that causes bronchiectasis which leads to NTM infections. I said “I wish I had been told that 10 years ago so I could have taken precautions”, and his answer was “they didn’t know that 10 years ago!” So now we know that, so, I sleep on a wedge, and try NOT to eat anything past 7:00, (or then I sit up for 5 hours). I hate to admit but, I’m not good at all about watching what I eat. I like to eat. I do lung clearance exercises (50 breaths, various positions and huff cough) twice a day with an Aerobika and I nebulize 3% saline once a day. Which I may ask him to up the % to 7 since that’s what most people on here seem to do. I have some shortness of breath, but my oxygen levels are always above 96% (that’s the lowest it’s ever been). So, I exercise, live my life, go away on vacation , and pray for the best for all of us.
Hope my story helps a little.
Gina

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Replies to "@ann0616 I was also diagnosed from a CT scan. The not so short story is, I..."

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.

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