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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@marciefincher Hi, I coughed up blood before. It was liquid blood mixed with pieces. It came on very suddenly and I had no other symptoms except coughing and excess mucus due to allergies. I went to the ER because the quantity of blood was substantial. They kept me there overnight (I went in the evening) and the blood kept coming out throughout the night, soaking up a number of paper towels. It subsided by early next morning and completely stopped by midday. It sure was terrifying to see huge amount of blood coming out every time I coughed. I was subsequently diagnosed with bronchiectasis and MAC. That was 5+ years ago and it has not returned since. That was the only time it's happened to me so far.
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@ling123, Ling!!! So happy to hear from you! How are you??!
Not good at all ! I have a message in to the Jax Pulmonologist at Mayo. I feel like I was run over by a bus. I have a lot of mucus and I am coughing up blood as well. No temperature. My body is sore and achy, I am drained. This started around mid Feb.
Hi, it feels good knowing that I am not the only one on this problem.
Thanks for sharing all your experiences. Almost after a year of loosing weight drastically and not knowing what was causing it, it was frustrating. Finally I was diagnosed with this nasty MAC and after being in the hospital a couple of times, now I am under treatment. It’s going to be about a month with 3 antibiotics (for a year or so) and for 2 months Amikacin though a PIC line.
It seems that is working but sometimes I coughed and spit up some blood, at the beginning We panic and contacted the Dr, but now we’re learning that is part of the damaged lung (cavity) the breaks up the destroyed lung tissues when coughing. I tried taking Rubitoosing DM and is working. Thanks GOD that does not last long time.
I’m trying to keep the spirits high up and trust the treatment , good luck to all and we must keep praying 😎
@marciefincher I've coughed up about 2-3 TBS blood twice over the past 3 years (a combination of red blood and clots). The first time, I went to the ER and that, eventually, led (after about 1 ½ yrs) to the diagnosis of bronchiectasis and MAC. I cough in the mornings, but don’t really have any other symptoms and don’t take any antibiotics. I exercise/walk 2-3 miles daily. I've been investigating whether coughing up blood may actually be a good thing in MAC. In my reading of MAC articles, I found one called "Retrospective study of the predictors of mortality and radiographic deterioration in 782 patients with nodular/brochiectatic MAC lung disease" by Gochi et al. ( https://www.ncbi.nlm.nih.gov/pubmed/26246077 ) From the article, very few people seemed to die of MAC-related issues. The women with bloody sputum fared the best. I'm trying to find out why.
@lorifilipek thanks for that, had a look at the site, looks very interesting, will work my way through all the articles on there. Sonetimes I bleed on and off for over a week, nasty, teasp to 2tblsp. Thanks for the article. Heather
Hello. I’m brand new to this forum & so thankful to find so many others in the same boat as me. I was diagnosed with bronchiectasis & MAC in October 2020 I frequently cough up blood of various amounts & colors. My pulmonologist is unconcerned & says it’s like a nosebleed of sorts. It’s completely scary tho – every time. Take care, y’all.
I get it same boat.If it’s less than a couple of tablespoons don’t sweat it.What is your regiment.?
I was diagnosed about 16 months ago and Dr said no need to go on the meds, my body can fight it off on it's own, possibly (I need to research this). 16 months later, just got sputum results and I still have it. He said they now recommend anyone testing positive for MAC go on the antibiotics. BUT let me add – my two twin sisters are one year younger than I am and both also have bronchiectasis and MAC. One of them was 18 months into the meds and began to lose her vision. Hence my reluctance to go on the meds.
lucie0948…We all understand your fear of vision difficulties. You'll have to weigh your discomfort and the damage MAC is doing to that fear. It is ethambutal that causes color blindness in one out of four people who take it for long periods. Hopefully, your sister is seeing her eye doctor every month as recommended or every other month and has stopped taking that part of the big three. We can make better suggestions if you'll answer a few questions. Are you and your sisters seeing an expert in MAC and bronchiectasis.
Are you coughing all the time? What supplements are you taking to soothe your discomfort? Are you using postural drainage?
Others will have more questions
Coughing up blood is scary. I was diagnosed in Nov. 2017 with bronchiectasis & MAC due to an incident of hemoptysis. Until about 9 months ago, my hemoptysis became more frequent (every 2-3 weeks) until my pulmonologist suggested that I start the “big 3” drugs. Around the same time I began nebulizing 7% sodium chloride (after mixing 3% & 7% for several weeks). My hemoptysis stopped for about 5 months & recently I’ve had only two occurrences in the last 4 months. I also realized that for the first time in 20 yrs there was no cat litter in my house. I continue my normal activities (walking, gardening, etc) & we are monitoring my bronchiectasis & MAC with a yearly CT & frequent sputum samples. My lung function is normal for my age. Hang in there & listen to your body. Take care.
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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