Hemoptysis - wonder what others do

Are there any other people besides me that are so terrified of hemoptysis that it controls their life? I can’t seem to stop thinking about it and when it will happen next. This has pretty much destroyed the quality of my life. I have mycobacterium simiae but am not willing to risk the medications due to many other health issues. I do airway clearance, good diet and some exercise though I know I am not exercising enough. Help!

The .9% saline might be as effective as the 5% combined you use and less irritating to your lungs.
Also, if you take NAC, please be aware that this may trigger bronchial bleeding.
Best wishes for great health!

Thank you so much! I think it makes sense to move to .9% for now. That's also really good to know about NAC. I had actually tried to take it in powder form at I believe 600mg dissolved in a drink and it definitely started to trigger coughing and lung "twitchiness" for me so I had to stop.
I really appreciate your insight!

I have had many hemoptysis episodes over the past year, not just pink in sputum but many clots that were scary to view the first time it happened. The clots were large and dark red, like maroon, ranging from specks to an inch in size. The coughing covered about 10 minutes so it wasn't just a one cough event. Each time I went to the ER but the fifth time I went the on-duty physician said, after viewing the pictures I had taken, that even though the clots looked scary, it wasn't necessary to go to the ER each time. These episodes are just part of bronchiectasis (and in my case MAC too). Each time I have an episode, I take pictures, which I would suggest you do also.

Most doctors say that if you are coughing up pure blood of a tablespoon or more, it may indicate a pulmonary embolism and an ER visit would be necessary. I won't be going to the ER anytime soon unless I'm scared I may have an embolism. I have found I can't use saline and my ID doctor has told me not to include it. The saline is too strong and causes a hemoptysis event for me each time. Same with Albuterol.

I walk 1-3 miles a day, depending on how I feel but on days I don't feel well, I push myself to walk some anyway.

Just know you aren't alone. But also accept the hemoptysis as part of our diseases. I too never know when the next one will occur but when it does happen, I move on. We cannot allow this to control our lives. Wishing you the best!

Karen, I am terrified of the Hemoptysis and hate it. Happened last night. I nebulized saline the day before, trying to get a sputum sample, to no avail. I’m also on Arikayce. Now afraid to do that.

Good to know it’s possible the NAC causes the twitching in lungs

Hemoptysis is a scary event. I have had a few episodes. One in 1996 after a flu and coughing for 3 months; it was enough blood to soak a towel. The ER said there was nothing they could do unless the bleeding didn't stop and then they would cauterize. The blood started to clot fairly soon after the event, and I continued to cough bloody mucus for a week.
That is the last time I went to the ER.
My next event occurred in 2017 at a hotel in New Orleans where my husband and I were staying. It might have been a few tablespoons, so we asked the desk to let us know the name and location of the nearest hospital. But once again the blood began to clot.
In 2020 I had my third episode. Maybe more than 2 or 3 T. It laid me flat for 3 days, tired, no energy, didn't feel well, but once again it clotted, and I knew ER couldn't do anything.
Fourth event was recent, in May of 2024. Maybe a few T. I discontinued use of the SmartVest.
Coughed bloody mucus for 5 days.
So now no vest therapy, only levalbuterol inhaler, followed by 3% neb saline, followed by steroid inhaler, and this twice a day. Mid-day I do manual airway clearance, lying on my back, exercises, controlled breathing, huff coughing. Then I do yoga or tai-chi as well as stretching exercises.
I walk the dogs almost every day, weather permitting.
Hemoptysis will always be worrying and scary, but I believe you will be healthier and happier if you can control your anxiety.
We have doctors and medical facilities at hand if we ever need them.
Good luck and no you aren't the only one who has been through this awful event.

Not to worry about a small amount of blood in mucus. My pulmonologist says it is like a scab coming off when you cough up some blood,

It seems to be a part of having Bronchiectasis. It may indicate a flare of bacteria that needs treatment. But my pulmo said to go to the ER if it was 1/2 cup plus. That seems like alot to me but that is what he said. Otherwise the events of coughing blood do seem to come and go and are part of the disease. For me it has been a long time now. But i do cough up ALOT of mucus daily.

@karen10225 This stupid disease throws nasty curve balls at us all the time, and certainly unexpected bleeding is near the top of the list! It is really scary the first time it happens, just like the first time you cough so hard you can't catch your breath and maybe are even "seeing stars."
I see that a lot of people here have shared their own stories about hemoptysis, and how they have learned to deal with it.
What I wish I had done back at the time of my diagnosis was to talk to a therapist about ALL of my fears surrounding MAC & Bronchiectasis - I'm pretty sure I would have managed better. As it was, I had a very compassionate long-time primary caregiver who cleared her calendar more than once to counsel me - and she finally put me in touch with a therapist who handles pain management and chronic illness. She has helped me get to a good place, and now I just touch base with her a few times a year.
Do you have someone you can talk to?