Prognosis

Posted by strong4130 @strong4130, Jan 23 8:54am

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.

@km6

Warm water. Interesting. I do notice coffee and tea calm my cough and cold makes it worse.
I try to eat very clean most of the time. Having a hiatal hernia and reflux makes it more important

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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

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@paxmundi

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

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Thank you. Prayer is my weapon

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@ldylouis

Mine isn't asthma. I have lived with that since I was 18 months old. When I take a breath, I reach a point where it just stops. It is almost like my lungs hit a wall and won't expand further. Asthma is in the bronchial tubes and affects breathing very differently. I can exhale fine, which is the main sign of my asthma. I also took my Ventolin inhaler in the hopes that it would help. No such luck most of the time. The only medication added that I could be getting a reaction from is the Breztri inhaler. I still had an infection when I started on it, so I have no way of knowing if it is helping or might be hindering my breathing. I will talk to my ID Doctor next week about it.

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@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.

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@blm1007blm1007

Thank you for saying this, "I am grateful that this vigilance is helping me move into the future with better overall health so that when there is really no alternative to taking a drug temporarily, I will be strong enough to weather its deleterious effects."

For me, my decision to not start the antibiotics suggested by Tyler has much to do with what you said and at age 82 and 3 1/2 months of age. This is my first chronic illness.

In looking back I believe I have had the infection since 2017, or prior, because I was needing to clear my throat of a substance each morning for a short time in the mornings and there were days that I brought up a small mucus head that was deeper, much deeper, in color than what comes up now after starting the routine for BE/MAI including air way clearance.
All during that time from approximately 2017 and now I have overall felt well and traveled to Europe 2 times. My worst experience was the 2018 flight return to the USA due to the dry air of the airplane and the painful sensation in the airways of the nostrils. My history of dehydration was due to my not listening and practicing the guidelines of drinking enough water.
During 2020 I was also at my worst in terms of my immune system due to allowing myself to let it weaken due to all I was not doing for myself during a horrendous period of stress with the settling an estate and the Covid precautions I put into practice including masking. However just before we were told to mask I blew dry leaves away from the foundation of my home, without a mask, and it was shortly after that when things took a turn. Needing to clear my throat gradually worsened to what it is today. This is my worst problem, having to constantly clear my throat which could be related to the small hiatal hernia that NJH found in Oct. of 2023.
I did not have Covid until 2024 (went to local pulmonary rehab for 3 days, no one was required to mask, and by the third day Covid diagnosis) and the effects of Covid lasted for less than a week without taking a full routine of Paxlovid. At the time of the Covid diagnosis in 2024 I had been back on my no processed foods diet etc. and drinking the water I needed.

Again, we are all different and different philosophies abound in all things, be it personally, or with the medical professionals etc. etc. . and as well, we all have different systems, genes etc. and health problems that require adjustments and deep thinking to help ourselves.

Wishing all of us to find our way to the best way to take care of ourselves and live our best life.
Barbara

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@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!)

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@bayarea58

@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!)

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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

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@bayarea58

@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.

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I did have a CT scan at the beginning of Oct. I believe.

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