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6 days ago · health at diagnosis in MAC & Bronchiectasis

@shooei Thanks for the suggestion. Thankfully I haven’t had the hemoptysis since 2016 after having the nodule removed. But it’s certainly something I want to avoid ever having again. My general pulmonary Dr was reluctant to give me the 3%. I’ll see what my NTM Dr says next time I see him. It will give me something to discuss with him. Thanks again.

Thu, Mar 14 6:44pm · health at diagnosis in MAC & Bronchiectasis

@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

Thu, Mar 14 6:15pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@mariierod123 The nearest to you looks like Clearwater. I’m not sure how far that is.

Thu, Mar 14 6:12pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

When I click on the link I posted it takes me to the main page. There is a button that says “SEE IF YOU QUALIFY”. When I clicked that button that is where it asked for my zip code.

Thu, Mar 14 6:08pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

@migizii I think you were responding to me about the study. If you were, when I clicked on the link they asked me to put in my zip code to find the study in my area. We’re you able to do that? Or maybe I sent the wrong link, I might have sent the link after I put my zip code. Maybe you could google the WILLOW study and see if you find something in your area.
Gina

Wed, Mar 13 7:18pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

If anyone is interested, there is a study called The WILLOW Study, on bronchiectasis treatment looking for candidates. If anyone wants to check it out or see if they qualify. Here is the link.

https://willowstudyportal.com/en-US/public?utm_source=bronchiectasisnewstoday%2CBRO%20E-mail%20List&utm_medium=pag%2Cemail&utm_campaign=5eafe06f4e-EMAIL_CAMPAIGN_2018_08_28_07_10_COPY_01&utm_term=0_d9df0e1c03-5eafe06f4e-71479961