Hello, I am a 50 yr old woman with mac and alpha one. Had it for four years, and have been taking antibodics for 3 yrs. I also have a prolastin c infusion for alpha one. Last week I started coughing up blood… Just wondering if that is normal for MAI
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Thank you for these replies. Truly comforting to know so many suffer with this. I’d never heard of MAC or bronchiectasis prior to my sister’s diagnosis. Let me add that I am 60 years old. I’ve run 6 marathons & countless half marathons. My last one was March 2020. Not sure if those are in my future but for now I run 6 days a week. Not always distance but something to get my lungs working. I’ve zero symptoms apart from almost daily coughing episodes and I keep working at it till my lungs crackle no longer. Blood sometimes. The last large bright red episode was last August but several not so frightening episodes since then. My first pulmonary function test was normal and my excellent lung dr says if second one also normal by comparison we can hold off on meds. I truly feel fine, no fatigue or needing extra sleep, very energetic. I was taking clear lungs but switched to mullein, NAC, echinacea & vit d. Was taking more but now just these. My big questions are – can it go away on its own? Or if not. Can I keep it from getting worse & live a good life into ripe old age unless something else gets me? Thank you!
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Good to hear that you are staying healthy. My Mom lived with Bronchiectasis for many years, and died in her mid-80s of something else entirely, so I figure this is something we live with, much like any other ailment.
In answer to your question, Bronchiectasis cannot go away, it is a permanent dysfunction of the lung, with airways that no longer react properly. By avoiding infections, we can often limit the progression.
MAC infections and other opportunists like Pseudomonas that attack our lungs can go away, sometimes without antibiotics, but because we are always at risk, we are not actually considered to be cured.
As far as everyone testing positive being treated with antibiotics, that is not generally the case. Usually it is positive culture plus evidence of lung damage like nodules and cavities, or symptoms. Here is the current guidance: https://www.lung.org/lung-health-diseases/lung-disease-lookup/nontuberculous-mycobacteria/diagnosing-and-treating-ntm
Are you doing daily airway clearance to help keep mucus out of your lungs?
I've also coughed up blood a couple of times. Most recently, just before Christmas. It just seems to bubble up. I hadn't been coughing excessively prior to it happening. Although I know it is a symptom of Bronchiectasis, it's still a scary thing when it happens, and, I still get very nervous! I went to my Dr. the next day just so he can check my lungs and so he's aware of when it happens.
I have also coughed up blood several times in the past 3 years. I can relate to the fact that it bubbles up as well and I know immediately that I am going to cough up blood. The beginning of January I had to go to the emergency room due to coughing up of blood. I find it so scary at times. Stayed in the hospital about 3 days and was treated with intravenous antibiotics. Bleeding stopped and was diagnosed with pneumonia for the second time in a number of years. They gave me cipro to take 2 times a day for 10 days. Going to see a pulmonologist the beginning of February. Never know when I will get another infection. Always in the top of my mind. Try not to think about this but it is always there none the less. Wish everyone a good evening and most of all a healthy life. Sher
Always good to let your doctor know. Mine was never concerned about it but I've read it depends on the quantity. If its more than a 1/4 cup, you go to A&E. I believe its normally a sign of infection as mine was, which along with weight loss determined the start of my antibiotic treatment. You're already on treatment so you would be wise to get it checked out.
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