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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
Hello,
I have been reading through these posts for the past several weeks and have learned a TON. I so appreciate the willingness of people to share their experiences.
I am a 37 y/o who was recently diagnosed with MIA (from BAL) and bronchiectasis after having four episodes of pneumonia since August 2016. I have had asthma all of my life and severe GERD that was fixed after a Nissen Fundoplication in 1999. Other than that I am a healthy individual. I was also diagnosed with a hernia after a recent cat scan.
It isn't clear if the MAI is the cause if the pneumonia and related pulmonary issues or a consequence of already vulnerable lungs due to an unknowm cause. I didn't have the bronchiectasis in February, per the cat scan, but it has since developed, per scan earlier in May. I started azithromyacin (sp?) last week and am beginning the second antibiotic tonight (Ethabutol?) and am a little nervous, as I have two toddlers and a demanding job. Any advice about anything would be much appreciated!
Thank you.
Jen
Replies to "Hello, I have been reading through these posts for the past several weeks and have learned..."
Hello! I am down south of you in Bluffton, near Hilton Head. I go to the
Mayo in JAX. My doc said stay away from Azithromax as long as possible because
it is a 'BIG GUN', save it for when nothing else works. I was put on it
nilly-willy for years prior to my diagnosis. It is a broad-spectrum drug; it is
most dr's 'go-to' drug . Did you have a sputem test prior to getting this
prescribed for you?
@janovr, love your attitude! I do think mental outlook and attitude is 50% (or perhaps more) of the battle with NTM -- not that NTM isn't a real disease. But it's a chronic, sometimes life-long disease that many of us will need to partner with a pulmonologist to manage it. Sort of like diabetes or severe high blood pressure, etc. I echo your thoughts, that I too " ... do not have my head stuck in the sand….I just refuse for this disease to define me and my life." Bravo to you!
Hi Paula, I feel the same way, this disease will not take over my life! It
did foe awhile (admittedly), but now, I choose to live carefully in denial I
guess. It is working out good for me so far. Mind, I keep on top of my med
regimen, exercise, eat right, etc.. but otherwise , try to forget that I have
this disease.
You've sure got the right idea, @windwalker - Other than the meds (and many are asymptomatic and not on meds), I think plenty of rest and EXERCISE that will open your lungs is crucial! For people who aren't into exercise -- that was me a decade ago! -- start small, walking a little each day and then find a good Intro Yoga or Pilates class.
OMG, Girl! You are me all over again.
Dr. Colin Swenson
Emory/St. Joseph's Hospital
Atlanta, GA
Paula, I do a one hour three times a week cardio class. It has made a HUGE
difference. I can now dance all night!
Hi Jan, I have not seen previous posts about this. Is this Dr really
good?
Yes. He has common sense. He knew what the meds did to me. My sputum culture did show I was on the correct antibiotics, however my body totally collapsed while taking them.
We are in a "wait mode" and I am doing great!
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Ah...... I feel the same way.