Prognosis
Very new to this. I just had a bronchoscopy culture come back as mycobacterium and prior to this had several CT’s which showed lung nodules. I am waiting for my pulmonologist to call and discuss these results with me, but think I’ll be diagnosed with MAC based on my own research/symptoms. I’m 42 and on biologic infusions for inflammatory bowel disease, with a history of recurrent pneumonia and asthma.
How many of you have been diagnosed for over 10,15, and 20 years. What I’ve read so far on this diagnosis is very disheartening. I want to live to watch my son grow up and would be thrilled to live into my 70’s so am looking for success stories.
Have already requested a referral to an NTM specialist by my PCP. He said he can put this in but would like to wait for my pulmonologist’s input first. He said this is very treatable, but this doesn’t seem so according to what I’ve read, so please share your story.
Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.
I still have small hemoptysis episodes, but generally, I find that the very warm water is still my most effective airway clearance strategy when combined with a warm, soup-based diet. I hope the water continues to help you as well. And good that you eat clean. With this illness complex we need the best nutrition we can possibly get. Controlling stress is my next Mt. Everest to climb. I think it is deeply impactful on how I fare on a daily basis.
Wishing you all the best as you navigate what is optimum for you. We are so lucky to have each other on this journey.
Aida
Thank you. Prayer is my weapon
I hear you.
@ldylouis what you describe, where you take a breath in and it just stops at some point, like your lungs hit a wall … that sounds a bit like interstitial lung disease. I can’t tell from your post if you have had a CT or not.
@blm1007blm1007 getting to 82 without a chronic illness is extraordinary. You are obviously doing a lot right (and must have some really great genes to boot!)
I do believe so, the genes. I think my genes, along with the doctors and the liquid antibiotic 24/7, got me through the Legionella and Mycoplasma Pneumonias I had at the same time in the 80's. A funny....I requested Liver and Onions for breakfast one morning and the small hospital kitchen I was in honored my request.
Barbara
I did have a CT scan at the beginning of Oct. I believe.