1. < MAC & Bronchiectasis

Hemoptysis - wonder what others do

Posted by wsbme74 @wsbme74, Jun 11, 2024

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.

paxmundi | @paxmundi | Jan 1 10:45pm
In reply to @cayenne "Karen, I have dealt with hemoptysis for years now and understand how frightening it can be...." + (show)
@cayenne

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.

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A youtube video specifically on hemoptysis that was recommended on this site is the following: Dr. Mark Metersky from the Connecticut School of Medicine. Very helpful.


It might be wise for your doctor to order a CT scan if you have not had one since your bleeding started to confirm that it is only irritation of blood vessels and also to inform you as to where your bronchiectasis is most prevalent. This can help tremendously in what you do to help yourself. I agree that you should rest more and not do dramatic air clearance while spitting up blood. Your little blood vessels need a break from vigorous airway clearance for a bit. You may want to consider only proceeding with gentler exercises like Active Cycle of Breathing, Autogenic Drainage (which is so similar to the ACB), exercise, particularly of the upper body, walks in fresh air--until you have stopped bleeding. I now have intermittent small bleeds as of the last year and my doctor has advised me to stop the Aerobika during those episodes as well. As someone in the very small minority who had a massive hemoptysis and almost died from it ( I have a history of TB in my youth), I am learning to listen to what my body needs, when it is overstressed, etc. I don't trust violent coughing or too intense huffing at any time b/c of my history but we're all different. Drinking very warm water all day has really worked to thin my secretions as has eating mostly soups. I supplement with liquid minerals because of the copious amount of water I drink.

I still struggle but am learning something new every day.

Wishing you all the best on this journey. We are all in it together though our conditions all have their particularity.

Aida

REPLY
paxmundi | @paxmundi | Jan 2 2:22am
In reply to @sueinmn "Karen, I am so sorry this has you so anxious. As you have seen here, it..." + (show)
@sueinmn

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?

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Sue,
A cup of blood in one day is a lot of blood, and if it indicates a clotting issue, it can also mean the rupture of a larger blood vessel that warrants surgery and not just medication. A CT scan would definitely be in order immediately if that were the case to determine (if possible) the source of the bleeding. My bronchial artery was embolized in two places when I had my massive hemoptisis through intervention radiology and I was put on life support for five days. But here I am!

Aida

REPLY
pmmar1 | @pmmar1 | 6 days ago

I am not on any medications after experiencing side effects from 1 of the drugs prescribed for MAC/BE. I have had 19 hemoptysis episodes in the past year, some major and others less alarming. I was hospitalized once (2023) because it was Labor Day Weekend and the hospital doesn't do bronchoscopies on holidays so I had to wait (due to the IV already in my arm, which made it easier for all concerned to stay) until Tuesday after the weekend.

Initially, I went to the ER the first 4 times. The doctor in the ER said, after viewing the photos I took of my hemoptysis and as "major" as they appeared to me, it isn't necessary to go to hospital unless the amount is over 1 tablespoon of pure blood (which could be a pulmonary embolism but most are not.) My ID doctor, after seeing the photos I had taken, said a couple of them looked to be over the 1 tablespoon but, like the ER doctor, said it isn't necessary to go to the ER every time unless the hemoptysis continues over a long period of time. My pulmonologist, however, told me to go to the ER. So opinions vary. I don't like the ER or hospital stays so will stay away from that. (I recommend taking photos of your episodes to show the doctor).

I use only the Aerobika for airway clearance. Adding the saline/albuterol, or any combination of those, causes hemoptysis episodes, including, occasionally, the use of the Aerobika by itself (the most recent 6-8 episodes). Another thing to consider, my dietician asked me to stop taking Omega3 because some studies show that it can cause blood thinning and hemoptysis.

There really is no remedy for hemoptysis. For some with BE/MAC, but not all, it isn't uncommon but a true nuisance at any rate. Although in the beginning my pulmonologist prescribed prednisone, it is generally not recommended even though some doctors will prescribe it.

Meanwhile, in spite of the episodes, I go on with my life, not allowing them to interfere with my functioning being, not ideal but doing okay. I never know when I'll have the next episodes and, thus, I carry on. I've had episodes as short as 2 days apart and others happen after a 2-3 month "vacation." Just when I think I'm hemoptysis free, BAM!, another one happens. Such is my very interesting life!

I hope this helps and wishing you well!

REPLY
2 replies
irenea8 | @irenea8 | 5 days ago
In reply to @pmmar1 "I am not on any medications after experiencing side effects from 1 of the drugs prescribed..." + (show)
@pmmar1

I am not on any medications after experiencing side effects from 1 of the drugs prescribed for MAC/BE. I have had 19 hemoptysis episodes in the past year, some major and others less alarming. I was hospitalized once (2023) because it was Labor Day Weekend and the hospital doesn't do bronchoscopies on holidays so I had to wait (due to the IV already in my arm, which made it easier for all concerned to stay) until Tuesday after the weekend.

Initially, I went to the ER the first 4 times. The doctor in the ER said, after viewing the photos I took of my hemoptysis and as "major" as they appeared to me, it isn't necessary to go to hospital unless the amount is over 1 tablespoon of pure blood (which could be a pulmonary embolism but most are not.) My ID doctor, after seeing the photos I had taken, said a couple of them looked to be over the 1 tablespoon but, like the ER doctor, said it isn't necessary to go to the ER every time unless the hemoptysis continues over a long period of time. My pulmonologist, however, told me to go to the ER. So opinions vary. I don't like the ER or hospital stays so will stay away from that. (I recommend taking photos of your episodes to show the doctor).

I use only the Aerobika for airway clearance. Adding the saline/albuterol, or any combination of those, causes hemoptysis episodes, including, occasionally, the use of the Aerobika by itself (the most recent 6-8 episodes). Another thing to consider, my dietician asked me to stop taking Omega3 because some studies show that it can cause blood thinning and hemoptysis.

There really is no remedy for hemoptysis. For some with BE/MAC, but not all, it isn't uncommon but a true nuisance at any rate. Although in the beginning my pulmonologist prescribed prednisone, it is generally not recommended even though some doctors will prescribe it.

Meanwhile, in spite of the episodes, I go on with my life, not allowing them to interfere with my functioning being, not ideal but doing okay. I never know when I'll have the next episodes and, thus, I carry on. I've had episodes as short as 2 days apart and others happen after a 2-3 month "vacation." Just when I think I'm hemoptysis free, BAM!, another one happens. Such is my very interesting life!

I hope this helps and wishing you well!

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You might consider taking vitamin K2. I do not have hemoptysis episodes these days. Maybe the K2 has helped. I also notice that Omega 3 will increase my getting nose bleeds so probably hemoptysis also if I were to take too much. I try to take it every other day as it has such good anti inflammatory benefits. I do take the K2 every day and also D3 but at different times of the day as they would compete with each other if taken at the same meal (should be a fatty meal).

REPLY
pmmar1 | @pmmar1 | 4 days ago

Irene: Thank you for your reply. My dietician at NJH has prescribed the vitamins I need and I do take B12, D3 and a multi-vitamin. I also take a probiotic.

I just read lately that D3 + calcium is not as effective as originally thought so a person wonders what is/isn't effective anymore. The pharmaceutical/vitamin companies make the money and leave us wondering whether we'd feel better not on them!

REPLY
1 reply
Mentor
Sue, Volunteer Mentor | @sueinmn | 3 days ago
In reply to @pmmar1 "Irene: Thank you for your reply. My dietician at NJH has prescribed the vitamins I need..." + (show)
@pmmar1

Irene: Thank you for your reply. My dietician at NJH has prescribed the vitamins I need and I do take B12, D3 and a multi-vitamin. I also take a probiotic.

I just read lately that D3 + calcium is not as effective as originally thought so a person wonders what is/isn't effective anymore. The pharmaceutical/vitamin companies make the money and leave us wondering whether we'd feel better not on them!

Jump to this post

That report about calcium and D3 had been widely disseminated without adequate explanation.

The report was that these supplements do not prevent falls.

There is nothing about what it does for bones.

That's what happens when the media gets wind of a scientific report. I'm on my phone tonight. I'll try to find the link and post it tomorrow.

REPLY
1 reply
paxmundi | @paxmundi | 3 days ago
In reply to @pmmar1 "I am not on any medications after experiencing side effects from 1 of the drugs prescribed..." + (show)
@pmmar1

I am not on any medications after experiencing side effects from 1 of the drugs prescribed for MAC/BE. I have had 19 hemoptysis episodes in the past year, some major and others less alarming. I was hospitalized once (2023) because it was Labor Day Weekend and the hospital doesn't do bronchoscopies on holidays so I had to wait (due to the IV already in my arm, which made it easier for all concerned to stay) until Tuesday after the weekend.

Initially, I went to the ER the first 4 times. The doctor in the ER said, after viewing the photos I took of my hemoptysis and as "major" as they appeared to me, it isn't necessary to go to hospital unless the amount is over 1 tablespoon of pure blood (which could be a pulmonary embolism but most are not.) My ID doctor, after seeing the photos I had taken, said a couple of them looked to be over the 1 tablespoon but, like the ER doctor, said it isn't necessary to go to the ER every time unless the hemoptysis continues over a long period of time. My pulmonologist, however, told me to go to the ER. So opinions vary. I don't like the ER or hospital stays so will stay away from that. (I recommend taking photos of your episodes to show the doctor).

I use only the Aerobika for airway clearance. Adding the saline/albuterol, or any combination of those, causes hemoptysis episodes, including, occasionally, the use of the Aerobika by itself (the most recent 6-8 episodes). Another thing to consider, my dietician asked me to stop taking Omega3 because some studies show that it can cause blood thinning and hemoptysis.

There really is no remedy for hemoptysis. For some with BE/MAC, but not all, it isn't uncommon but a true nuisance at any rate. Although in the beginning my pulmonologist prescribed prednisone, it is generally not recommended even though some doctors will prescribe it.

Meanwhile, in spite of the episodes, I go on with my life, not allowing them to interfere with my functioning being, not ideal but doing okay. I never know when I'll have the next episodes and, thus, I carry on. I've had episodes as short as 2 days apart and others happen after a 2-3 month "vacation." Just when I think I'm hemoptysis free, BAM!, another one happens. Such is my very interesting life!

I hope this helps and wishing you well!

Jump to this post

Thank you for sharing this! I felt a kindred spirit. I had about fourteen episodes of spitting up bright red blood this year and your suggestion to take photographs is excellent--hadn't thought of that. In the past year I went as long as 100 days without an episode and then it happened again. For me, it was clearly related to eating denser foods and then my lungs having too much of a struggle to clear out the mucus. I think this has been the precipitator almost every time. Or if I have been overly stressed or not gotten enough rest and my schedule is off--kilter. Since my situation got worse, I feel that I have to be a lot more careful about how I live my life--I need to be moderate in all things and stay balanced. Otherwise, my lungs weaken and then it's a downward spiral leading to a bleeding episode.

REPLY
annagh | @annagh | 3 days ago
In reply to @sueinmn "That report about calcium and D3 had been widely disseminated without adequate explanation. The report was..." + (show)
@sueinmn

That report about calcium and D3 had been widely disseminated without adequate explanation.

The report was that these supplements do not prevent falls.

There is nothing about what it does for bones.

That's what happens when the media gets wind of a scientific report. I'm on my phone tonight. I'll try to find the link and post it tomorrow.

Jump to this post

The one question Dr. Winthrop (ID doctor at OHSU) asks me at every visit is, "Are you taking your vitamin D... with some fat?" I'm not sure how it connects with BE and MAC, but he certainly seems to feel it's important.
Anna

REPLY
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