Hemoptysis - wonder what others do

@karen10225, I moved your recent post about hemoptysis to the previous discussion where you are connected with fellow members like @wsbme74 @gigiv @pmmar1 @reneemc @happy2023 @irenea8 @sueinmn @sisterpulse @sweethighland and more.

- Hemoptysis - wonder what others do
https://connect.mayoclinic.org/discussion/slight-hemoptysis-wonder-what-others-do/
As others have said, coughing up blood is scary. I can understand your being paralyzed by fear. I'm glad you came here to talk about it, to get tips on controlling the condition and learning that you can live well with mycobacterium simiae. The toll this is taking on your mental state might be something you wish to also talk to a counselor about. Do you have access to a social worker?

your comment is of some consolation and I try to remember it whenever I am scared. When you have hemoptysis is it in large amounts or just some blood in the mucus?

I realized I do have access to a social worker and I will get in touch with her. I remembered that her wife died of lung cancer so she probably has experience with the coughing up of blood. Thank you for hooking me up with some other members. This site is a great help to me!

Hi Karen, Sometimes I have just some blood in the mucus which is totally normal with BE. But usually I do not have any and it will clear up. On other very rare occasions I will cough up pure blood. The amount is usually a tablespoon or two or even three? Then for a day or so I may continue to cough up some blood mixed with my mucus during airway clearance. Then it clears up. I might double up on my K2 vitamin and/or take less or stop anything that thins the blood. But it just resolves on its own. At first it scared me. Now I know it is part of the disease and not too worry. It is not pleasant and always unwelcome but it no longer gives me anxiety.

Colleen: The first time it happened I was rather shocked, naturally, as I viewed large red/maroon clots in my white sink, not just pink sputum.

After consultations with my pulmonary (local) and ID (NJH) doctors, I was assured the hemoptysis is just one symptom of bronchiectasis and some people have it and others do not -- and unless it's a pulmonary embolism, coughing up pure blood, it generally doesn't need to be addressed.

So, 16 episodes later, I'm doing fine and, other than the BE/MAC I have and which are far more concerning, hemoptysis is the least of my worries and I want others to know and accept the symptom -- and to move on.

I appreciate your concern and thank you for it. I didn't need to see a counselor for my hemoptysis. However, in all honesty, the diagnosis of BE/MAC initially was overwhelming and I did seek counseling. Like most major diagnoses concerning one's longevity, one cannot just "radically accept" a diagnosis and be over it. It requires steps to get there and because of my wonderful counselor who has 35 years experience dealing with chronic disease, I have accepted the diagnosis and, rather than trying to save my life, I am now living my life to the fullest and, at this point anyway, without antibiotics -- just airway clearance, a nutritious diet, and exercise!

I encourage others to seek counseling because it does make a huge difference and I am no longer needing the sessions as a part of my journey. I wouldn't trade the experience for anything and I have much less stress in my life.

Thanking you for your advice -- and best wishes to those who have BE/MAC, hemoptysis or not.

Hemoptysis can be rather frightening. The first time it happened I was shocked, naturally, as I viewed large red/maroon clots in my white sink, not just pink sputum.

After consultations with my pulmonary (local) and ID (NJH) doctors, I was assured the hemoptysis is just one symptom of bronchiectasis and some people have it and others do not -- and unless it's a pulmonary embolism, coughing up pure blood, it generally doesn't need to be addressed.

So, 16 major episodes later, I'm doing fine and, other than the BE/MAC I have and which are far more concerning, hemoptysis is the least of my worries and I want others to know and accept the symptom -- and to move on.

Colleen, a Mayo representative, suggested counseling for those stressed by hemoptysis. I didn't need to see a counselor for my hemoptysis. However, in all honesty, the diagnosis of BE/MAC initially was overwhelming and I did seek counseling. Like most major diagnoses concerning one's longevity, one cannot just "radically accept" a diagnosis and be over it. It requires steps to get there and because of my wonderful counselor who has 35 years experience dealing with chronic disease, I have accepted the diagnosis and, rather than trying to save my life, I am now living my life to the fullest and, at this point anyway, without antibiotics -- just airway clearance, a nutritious diet, and exercise! And occasional hemoptysis.

I encourage others to seek counseling because it does make a huge difference and I am no longer needing the sessions as a part of my journey. I wouldn't trade the experience for anything and I have much less stress in my life.

Best wishes to those who have BE/MAC, hemoptysis or not.

Thank you so much for your post. I find comfort in it. The only thing I can’t seem to get over is the fear no matter how many time I see the blood. Usually it’s an 1/8 of a cup and quite bright red. But you are right in that it has to be accepted because I can’t change it. Where this really controls my life is that I rarely go out and do anything. Mostly that’s because I cough up mucus a good deal of the time and of course I never know when it will be blood so I just don’t want to be in public. I am not sure what I can do about that issue.

Thanks so much for your reply. Each time I hear what other people’s doctors have told them I get a little more courage. Thanks for sharing with me.

I have had numerous episodes of coughing up blood through the years. The first time was totally out of the blue and I choking and gagging on coughing up so much blood. I wouldn't be diagnosed with BE for about 7 years. It didn't happen again for a couple of years. I have since had 2 other extreme episodes and multiple minor ones. They always stop on their own and everytime it happens is frightening. I have pretty much pinpointed the causes as poor air quality or a cold. More extreme episodes air quality. I had a bronchoscopy 3 years ago and they couldn't find a cause and told me my lungs are very friable. They did find that I had MAI. I have multiple air filters in the house and recently bought one for the car. I wear an AirPro when I go outside this summer as our quality can be a problem even in the 20's.
I don't think you ever get use to it and each time is upsetting. I just started taking the NAC and now feel a little concerned from hearing that it can cause bleeding. Haven't take Ibuprofen in years for this reason.

Thanks for the reply. I have a questions. What is NAC ? I keep seeing people write that they take it but don’t really know what it does. Thanks.