1. < MAC & Bronchiectasis

Hemoptysis - wonder what others do

Posted by wsbme74 @wsbme74, Jun 11 7:12am

Hi. I have asthma and mild Bronchiectasis, diagnosed with the latter last year. I have had small spots of blood when clearly fighting an infection on a couple of occasions. However, the last couple of days, I have had a couple of bright red blood spots (not large, but always alarming!) in my clear mucus. I don't have a cough or fever. Noticing a little chest tightness but not a lot. I usually neb with levalbutirol followed by either 3% or 7% saline (usually a mix to get to about 5% as best tolerated) in the morning plus aerobika and breathing exercises and then aerobika and postural drainage in the evening. I sometimes neb in the evening as well - if I am fighting something or have been around potential germs, which I did twice this weekend.

I have held off using the saline over the last 24-hours as don't wish to aggravate the situation. But, of course, I also don't want to make things worse by not doing airway clearance! My pulmonologist isn't the most-versed in Bronchiectasis nor readily-available. But in Maine, they are all in short supply!

Just wondering what others do or have been instructed to do with any signs of hemoptysis when it's a small amount. Thanks!

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

reneemc | @reneemc | Jun 12 8:51pm
In reply to @karen10225 "Are there any other people besides me that are so terrified of hemoptysis that it controls..." + (show)
@karen10225

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!

Jump to this post

Karen, is your homoptysis a result of airway clearance?

REPLY
karen10225 | @karen10225 | Jun 12 9:42pm
In reply to @sueinmn "@karen10225 This stupid disease throws nasty curve balls at us all the time, and certainly unexpected..." + (show)
@sueinmn

@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?

Jump to this post

I don’t, but need to find someone who specializes in chronic illnesses before I go completely crazy. I try so hard not to be scared, but I can’t seem to control my fear and it has completely taken over my life. Problem here is that it’s hard to find someone. Even my psychiatrist who prescribes my anxiety meds doesn’t know anyone to recommend.

REPLY
1 reply
irenea8 | @irenea8 | Jun 13 10:03am
In reply to @karen10225 "I don’t, but need to find someone who specializes in chronic illnesses before I go completely..." + (show)
@karen10225

I don’t, but need to find someone who specializes in chronic illnesses before I go completely crazy. I try so hard not to be scared, but I can’t seem to control my fear and it has completely taken over my life. Problem here is that it’s hard to find someone. Even my psychiatrist who prescribes my anxiety meds doesn’t know anyone to recommend.

Jump to this post

if it is any consolation, I have had Bronchiectasis for 20 plus years. I have never had a bleeding episode that did not resolve on its own. I even continue with airway clearance since for me the mucus amount is more extreme and has to be cleared.

REPLY
1 reply
karen10225 | @karen10225 | Jun 13 5:23pm
In reply to @karen10225 "Are there any other people besides me that are so terrified of hemoptysis that it controls..." + (show)
@karen10225

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!

Jump to this post

Thank you for your reply. There is consolation in reading it. I appreciate your sharing.

REPLY
sisterpulse | @sisterpulse | Jun 16 4:25pm

Hi all,
I agree coughing up blood is scary. Recently over three days I took photos of it and sent them to my Respiratory Specialist Nurse UK NHS.
We agreed to start the rescue Ciprofloxacin and to treat the episode as a ‘flare up’ of Bronchiectasis inflammation and infection.
Sputum sent to path and Chest CT scan soon.
It’s my first year of Be, NTM Mac Avium/chimera. I’m avoiding the big 3 and hope the NTM behaves itself and remains in two small nodules in the left lung.
I did take manuka honey when I had pseudomonas and now take Organic Greek honey and Abbott Encore which has helped me gain weight and have more energy. Maybe it all helps, who knows.
Great to have this forum for info and support. Many thanks to all.
Sr P

REPLY
sweethighland | @sweethighland | Jun 18 4:05pm
In reply to @reneemc "Good to know it’s possible the NAC causes the twitching in lungs" + (show)
@reneemc

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

Jump to this post

It can cause bleeding too, in my case.

REPLY
sweethighland | @sweethighland | Jun 18 4:07pm
In reply to @gigiv "The .9% saline might be as effective as the 5% combined you use and less irritating..." + (show)
@gigiv

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!

Jump to this post

Yes, NAC trigger bronchial bleeding in my case. Were you the same?

REPLY
2 replies
gigiv | @gigiv | Jun 18 6:10pm
In reply to @sweethighland "Yes, NAC trigger bronchial bleeding in my case. Were you the same?" + (show)
@sweethighland

Yes, NAC trigger bronchial bleeding in my case. Were you the same?

Jump to this post

Yes, I tried it once. But it was also after a bronchoscopy which made me bleed on and off for 2 months. Toward the end of the 2 months, I tried the NAC, and found a little bit of blood in my sputum. I looked it up, and read that NAC may trigger bronchial bleeding, so I stopped right there. Instead, I take Pterostilbene, it is antimicrobial and I remember reading positive ly about it on the NIH website for the lungs. It does not make me bleed and it seems to help, in particular for exercise. I also take Glutathione, which does not trigger bronchial bleeding and which also helps me. I think NAC is a precursor of glutathione. Best wishes for great health.

REPLY
reneemc | @reneemc | Jun 18 6:31pm
In reply to @sweethighland "Yes, NAC trigger bronchial bleeding in my case. Were you the same?" + (show)
@sweethighland

Yes, NAC trigger bronchial bleeding in my case. Were you the same?

Jump to this post

Frequently cough blood. I used NAC because others on this site have good results from it. Saying it brings up mucus. My Drs say there isn’t enough data to support using it.

REPLY
karen10225 | @karen10225 | Sep 7 9:24am
In reply to @karen10225 "Are there any other people besides me that are so terrified of hemoptysis that it controls..." + (show)
@karen10225

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!

Jump to this post

I have hemoptysis where I cough up about an 1/8 of a cup of blood each time. Thankfully this only happens every two to four months and has always resolved on it’s own. What I am worried about is my mental state because each time it happens I am paralyzed by fear and find myself wishing my life away. I don’t know what to do. Do others have such a huge fear response?

REPLY
2 replies
View MoreView Less
Please sign in or register to post a reply.