About

Member has chosen to not make this information public.

Pages

Member not yet following any Pages.

Posts (106)

Sun, Sep 8 8:08pm · In shock after MAC diagnosis in MAC & Bronchiectasis

@dsilva Hi, who do you see in NY? I’ve been seeing Dr. Kamelhar assoc with NYU since 2016. That has been his approach also. I have nodules that come and go, and some shortness of breath, but no other symptoms. I also have bronchiectasis. My regular pulmonary Dr has also agreed about the wait and see approach. I have learned that even if you go on the antibiotics and get rid of it you can still become reinfected and might need to be treated again. I think that’s why they suggest waiting.
Gina K

Sun, Jul 7 9:30am · 'PINK SLIME' Data Base in MAC & Bronchiectasis

I’m not sure if I responded to this thread or not. Sorry if it’s a duplicate response. I used to get that pink stuff in my shower when I lived in Brooklyn, NY, (Marine Park area). I now live in Staten Island, NY and I see it as a ring in my toilet bowl when I come home from vacations. I also worked as a teacher for the NYC Dept of Education for 29 years.
Gina

Mon, Apr 29 2:27pm · Arm numbness with Mac and bronchiectasis in MAC & Bronchiectasis

@papillion I noticed I get that in my arm/hand if I lay with my arm bent under my head for a while. Never really had it before, but didn’t think that it was from the bronchiectasis or MAC. Just figured it was from being in the same position for too long.

Tue, Apr 2 7:10pm · Bronchiectasis: New Diagnosis in MAC & Bronchiectasis

My Dr switched my Ventolin to Atrovent due to palpitations. You could try that.

Fri, Mar 15 10:50am · 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.