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My coughing blood history with bronchiectasis: Any suggestions?
when I was 17 years old, one day in the winter, I coughed up pure blood (it was pure blood without any other things from lung (no mucus, no green/yellow things) for 4,5 mouthful a day for a few days. and my doctor gave me penicillin, and I stopped coughing blood. A few weeks later, story started again and repeated for the whole winter and stopped in the spring.
to be clear, I didn't think there was anything like mucus or sputum from my lung, I believed it was pure blood that pushed me to cough, otherwise I won't cough at all.
6 months later, a doctor concluded that I have bronchiectasis and told me: do nothing and stay warm and exercise. I took it to my heart.
I have been jogging since, last 10+ years, jogging 3 miles minimum everyday.
Fast forward to 2022, I am 52 years old, on 3/2/2022, after a joyful jogging, shower, dinner, I felt there was something from my lung, for a moment, I knew it would be the blood and I knew the story I had 30 years ago came back: 4 mouthful of blood from lung.
3/3/2022 and 3/4/2022, nothing happened. For the record, I rarely cough in my life, last 30 years I probably coughed once a month.
3/5/2022, the coughing blood seems a lot more. I ran to ER at stanford in CA. The CT found a 12millimeter * 0.9 millimeter nodule in left lower lung, along with a ground glass opacity area (which the doctors believed to be blooding area). No markable bronchiectasis.
The doctors at stanford ran almost all the test, everything normal: they have never saw a coughing blood patient this healthy.
3/6/2022, AFB smear negative, 3/18/2022, MAC culture positive (after 12 days culture)
4/1/2022, PET/CT report the same nodule shrank to 0.6 millimeter * 0.4 millimeter, and nothing else markable, no malignancy anywhere in my body. No markable bronchiectasis.
Stanford did not do any bronchoscopy on me.
I probably can run 3 miles at full speed any day in the last 10 years, including during the hospital stay on 3/5/2022. The coughing blood continued like "on for 2 days", "off for 5 days", and completely stopped since 3/20/2022. However I still feel there is still something not right in my lower left lung but I cannot cough it out. and I only cough 2,3 times since 3/20/2022 ( this was a lot of cough compared to my history in the last 30 years)
other than that, sometime when exhale, I can smell some "old blood" smell, probably some small amount of bleeding in my left lung that cannot trigger a cough.
I felt better and better day by day, ever since I stopped coughing blood 3/20/2022.
by the way, if it worth mentioning, I am a 10+ years CPAP user for my sleep apnea, I love yard work and I do yard work almost every week.
this is my story, as a return of favor for this forum. Thanks to everyone who posted here.
I will see an ID next week who specialize NTM at stanford, but I think most likely I will just go with 7% saline, and some 6 month follow up with CT. I may choose not to do any bronchoscopy and lung wash.
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any suggestions to my thinking are welcome.
based on the reading from from forum, I will start below:
1. 7% hypertonic saline from amazon.
2. pari vios neb with green body.
I see you have thought this through very carefully, and probably done quite a bit of research. Because you have a long history of hemoptysis (coughing up blood) it might be a good idea to start with lower-concentration saline. Higher saline doses are a powerful irritant which promotes coughing and some people here say can lead to bleeding if you are prone to it. If the lower saline works, then maybe increase - based on consultation with the ID doc.
Has the bronchoscopy and lung wash been suggested by pulmonology?
Sue
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2 ReactionsI have yet to see a pulmonologist next week and an ID next week too. I am not sure I will go with bronchoscopy and lung wash even if they suggest so for just a "firm diagnosis of MAC", unless they have other strong arguments to do that.
my thinking is that if they can for sure confirm the MAC with all the details, I will just leave it with neb saline to control it. I will come back next week on the doctor visit. Thanks.
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2 ReactionsI think your plan makes good sense. I have posted several times about my hemoptysis. It’s very infrequent now & I attribute that to upgrading from 3% saline to 7% saline. I, like you, am very active (walking not running at age 72) & spend lots of time outside gardening. I do have a cough, but few other symptoms of bronchiectasis & MAC. I hope you continue to feel well. Take care.
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3 ReactionsThanks for your comments. Appreciated all your posts.
I agree with @bee1950. I've coughed up about 2-3 TBS blood twice over the past 4 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 and nebulize 7% saline. 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.
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4 ReactionsMore details. I'm 74 and also am an avid gardener/landscape enthusiast. I've had a couple of CT scans and one 3-day series of AFB tests, in which the MAC was discovered. Other than the morning coughing, I'm healthy and active. My ID doctor just told me to keep doing what I'm doing.
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3 ReactionsHi! Just wanted to throw out there that my pulmonologist felt I had MAC (and bronchiectasis) from my CT scan. I did have a bronchoscopy ( isn't bad at all ) and did not have MAC in any of my tests. Was glad that the results of MAC did not show up in the biopsy/washings. From this forum began using the 7% saline and basically have been "healthy" ever since I received the bronchiectasis diagnosis.
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1 ReactionDo you nebulize once or twice a day? I nebulize once daily but am wondering if could change to once daily as some others on this forum are able to.