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Hello forum. So happy to have found all this wisdom and grateful for being able to share the MAC experience. I was diagnosed with MAC in Oct 2024. My main symptom is coughing up blood which I did last night for about 20 min until I reached clear sputum. This is now the 5th time since April 2024. I’ve been to the ER twice but now am getting used to it and Dr says it’s part of the diagnosis but it happens at the most impossibly inconvenient times
Ex: night before Thanksgiving, right before I have to get on an airplane like now, etc. The first visit to ER after coughing up about 1/4 cup of blood is when they noticed the “several small cavitary nodules in lower and upper right lung” Am just getting used to Pulmonary hygiene which still needs refining - it’s the part I’m resisting and need help with. I’m very active but Dr said no more hot yoga which is awful because I’ve been doing it forever. Speaking of which, on the three occasions I’ve done a handstand and plow (both inversions) I began to cough up blood so not sure what that means other than the lungs are being affected by the compression of the yoga asana. Also nose is running constantly. The shortness of breath is getting uncomfortable too and I’m having constant heart palpitations which Dr says is from Azithromycin (Cardiologist says heart looks perfect) Given that everyone has a different experience of this condition I’m wondering how to think about the progression of things: do I expect more blood? Increased shortnesss of breath? More inhalers? Dr doesn’t give a clear picture but maybe this disease is not linear - at least he says my case isn’t serious but that seems hard to believe with all this coughing up of blood. I started titrating the 3 antibiotics (first Azithromycin, then Ethambutol, have yet to add Rigampin) on Oct 20, 2024 and felt better initially but not feeling great now. Also wondering about altitude as I love to ski. One last question: has anyone read “Reducing Exposure to NTM” by Joseph Falkinham? Be well everyone. Many thanks Joanna
Replies to "Hello forum. So happy to have found all this wisdom and grateful for being able to..."
Welcome, Joanna, to our group. When you are first diagnosed with MAC, it can feel as if your entire world has been turned upside down - new medications (and their side effects), coughing (and coughing up blood), having to change the way you live life...it can seem overwhelming.
Let's start here "...Given that everyone has a different experience of this condition I’m wondering how to think about the progression of things..." Getting rid of the infection should be #1 - you are lucky we are nearly into 2025 as the protocols have changed, and if the 3 drugs don't do the trick, there is an inhaled antibiotic that can be added. After that, it depends...my Bronchiectasis has been stable per CT for 5 years now, the nodules went away after treatment, I have a new med to control my underlying asthma, and my pulmonary function has not worsened. Not everyone is so fortunate, but I believe asthma control, airway clearance, 7% saline, diet and exercise have helped (though I have slacked off on the exercise while healing from shoulder surgery.)
And you asked, "...Also wondering about altitude as I love to ski..." Everyone is different, so I can only share my own experience - while I had an active MAC infection and was on the meds, I could not tolerate even 5000 feet without severe altitude sickness symptoms, so I was leery of the mountains for a few years. Now, as long as I give my body a day to acclimate before vigorous activity , I have no problem.
Finally, I am not surprised by your doctor's prohibition on hot yoga - mycobacteria thrive in a warm, moist environment, and become concentrated in small spaces, that's why Dr Falkinham is so adamant about avoiding indoor hot tubs and spas too. He would definitely agree with your doc about hot yoga.
Have you begun doing airway clearance? @irenea8 is a great resource to consult about how to do it safely with hemoptysis.
Here is a great video on why we do it, Dr McShane is one of our best resources:
Oh Joanna-
Sounds like you are much younger than me, I'm 82. The fact is that I had/have to face "life changes." As we know, almost nothing stays the same.
As you know, it is not an easy thing to accept but if we want to do right by ourselves....well...those hard decisions have to be made.
Like for me, deciding to take the meds. vs. a personal challenge of wanting to clear the MAI on my own and hoping I can. BUT that challenge may soon come to...TAKE THE MED'S.
Wishing you a way to find all your answers and needed decisions and that as we know goes for all of us.
Barbara
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Hello Joanna, you said: Am just getting used to Pulmonary hygiene which still needs refining - it’s the part I’m resisting and need help with.
I bet if you could tolerate the saline and or other airway clearance routines, you might not cough up the blood as often or as much? I have found that true in my case.