My coughing blood history with bronchiectasis: Any suggestions?

Posted by songfeijun @songfeijun, Apr 15, 2022

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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

@gej53

Do 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.

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I nebulize once daily.

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@lorifilipek

I nebulize once daily.

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Thank you! I meant to say twice daily. Would love to just do once daily and will probably try and see how I do. Thanks for you answer....

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Thanks folks. Interesting that my two CT scan did not suggest bronchiectasis at all, only a nodule and a small ground glass opacity area (first scan, bleeding area I guess), and the second scan only found the shrunken nodule, but no more ground glass opacity.

this might suggest my MAC (if really confirmed) could be easily gotten rid of without any medicine I hope.

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@lorifilipek

More 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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very inspiring. I hope I can be as energetic and healthy as you when I reach 74. Keep it up !

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done with my visit with ID. ID suggested to do a CT follow up in 6 months. no treatment or anything else, not even 7% saline as he thinks that is not worth the benefit, given my symptom is almost gone.

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@songfeijun

done with my visit with ID. ID suggested to do a CT follow up in 6 months. no treatment or anything else, not even 7% saline as he thinks that is not worth the benefit, given my symptom is almost gone.

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That must be a relief to hear. I hope you can stay healthy, and that you will get more good news in 6 months.

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@songfeijun

done with my visit with ID. ID suggested to do a CT follow up in 6 months. no treatment or anything else, not even 7% saline as he thinks that is not worth the benefit, given my symptom is almost gone.

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@songfeijun I bleed almost all the time from nearly anywhere, doing anything. Walking, sleeping, running, peeing, whatever. So did my father. And his father. Now the Sequencing.com genetic testing shows me to be in the grips of Von Willebrand. I suggest you get at least some strong level of genetic testing done. Get one of your doctors to order it (I hope you have Medicare Plan F). It is very simple. They send you a tube, you spit in the tube and send it back. Some nights I lose up to a half cup of blood. My wife says that is too much, and I need to do something, so I get larger and thicker pads from North Shore. I know of nothing else to do. Well, that and buy a new mattress occasionally. oldkarl

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@oldkarl

@songfeijun I bleed almost all the time from nearly anywhere, doing anything. Walking, sleeping, running, peeing, whatever. So did my father. And his father. Now the Sequencing.com genetic testing shows me to be in the grips of Von Willebrand. I suggest you get at least some strong level of genetic testing done. Get one of your doctors to order it (I hope you have Medicare Plan F). It is very simple. They send you a tube, you spit in the tube and send it back. Some nights I lose up to a half cup of blood. My wife says that is too much, and I need to do something, so I get larger and thicker pads from North Shore. I know of nothing else to do. Well, that and buy a new mattress occasionally. oldkarl

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@songfeijun Just a bit to add. I bleed from anus, penis, nipples, nose, mouth, eyes, ears, etc. I always have those skin bumps from AGEL, FKTN, FKRP, melanomas, basal cells, maybe up to a few hundred at a time. I also have those bumps on my upper and lower palates, a dozen or so, little cones just away from my teeth. old karl

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@oldkarl

@songfeijun Just a bit to add. I bleed from anus, penis, nipples, nose, mouth, eyes, ears, etc. I always have those skin bumps from AGEL, FKTN, FKRP, melanomas, basal cells, maybe up to a few hundred at a time. I also have those bumps on my upper and lower palates, a dozen or so, little cones just away from my teeth. old karl

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Thanks Carl, too bad you had so much bleeding. and thanks for the suggestion, I certainly will take notes and a gene sequencing in the near future. Thanks again and wish you good health!

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