Hemoptysis - wonder what others do

@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?

I get episodes of coughing up an eighth of a cup of bright red blood. Maybe every two or three months. Also blood in mucus every few weeks. How do you handle the fear that comes with that. I am so terrified I really just want to die.

@karen10225, I moved your post to this existing discussion.
- Hemoptysis - wonder what others do https://connect.mayoclinic.org/discussion/slight-hemoptysis-wonder-what-others-do/

I can understand that you're terrified. Coughing up bright red blood is scary. I'm tagging @sweethighland and @irenea8 as they understand first hand.

As you have posted, your fear of hemoptysis is taking control of your life. Have you considered talking to someone about the anxiety that this condition induces? It might help to work with someone or use CBT (cognitive behavioral training) to get beyond the paralyzing fear. What do you think?

I feel like nothing will take away the fear that has taken control of me, but I will research if there is anyone in my area who could handle this and who might take Medicare and supplement. Sadly money is an issue and I am guessing this would be expensive. Thank you for your help and I think it would help me to talk with the people you tagged so I really hope to hear from them. Thank you again.

I feel like nothing will take away the fear that has taken control of me, but I will research if there is anyone in my area who could handle this and who might take Medicare and supplement. Sadly money is an issue and I am guessing this would be expensive. Thank you for your help and I think it would help me to talk with the people you tagged so I really hope to hear from them. Thank you again.

Dear Karen. Probably most of us have the fear of getting sick again, of getting MAC reactivated or of other scary things that we deal with. So am I. Ask your family doctor for anti anxiety medication. I tried two andcould not take any because every time I developed racing hear and high pulse. I am still open to mental help and must find it near my home. But I am sure your medicare covers mental health and it should not ruin your finances. I think most of us are on a very tight budget. I never realized that a chronic disease can be so costly. Every extra purchase such as probiotics and tissue, filters must be purchased with the savings money. I hope you will get the help you need. My best to you.

Karen, I have dealt with hemoptysis for years now and understand how frightening it can be. The fear of it was the worst when I started the three drugs a few years ago and had an episode early on. What helped during that time was slow and steady breathing, exhaling through the mouth. I also put my hands on my chest to help calm things down. Those things still work for me today.
It’s also scary because the cause can be unclear. My pulmonologist used to tell me that it was always a sign of infection. But other doctors have said not necessarily. When I have an episode I always rest as much as I can and it resolves in a couple of days, or up to a week. Knowing that it has resolved in the past helps me through it.
There are a couple of good resources - one is a podcast by Dr. Swenson and another is a video specifically on this topic, sorry I can’t remember the doctor’s name, but it was within the past year or so. Maybe someone else can chime in here.
I’m sorry that you’re going through this and hope you find some coping strategies soon.

Karen, I am so sorry this has you so anxious. As you have seen here, it is a somewhat common thing with Bronchiectasis - the blood vessels in our lungs are damaged by this disease along with other tissue.

While I have not had major hemoptysis, I used to get pink froth when coughing. The respiratory therapist told me to make sure I was only using active breathing, "huff coughing" or postural drainage during airway clearance and limit any session to 20 minutes to avoid further irritating my lungs. She said it is not necessary to get out every bit of mucus out in every session - the goal is just to keep everything liquid and moving. Others have said they were advised to either change to 3% saline nebs or use less 7% saline after an episode. Have you tried that?

It might help you to understand that those episodes, while frightening, are not major hemorrhages, but breaks in tiny vessels. The guideline I was given was call if you have 1/2 cup of blood in one event or a cupful in a day. This can indicate a clotting issue, and you can be given medications to help with that.

@cayenne give good advice about calming yourself.

Now you have 3 new tools to help you.
- the knowledge that this is not life-threatening
- a possible way to reduce irritation to your lungs
- a relaxation exercise for when it does happen

And an old tool - you can always come and talk to us!
Will you try these tactics and let us know if they help?