Hi everyone. I just got out of the hospital a couple days ago but while I was in, a few days after I had been admitted, I coughed up blood. And it wasn't just a little, they said it was probably about 200cc which i believe is almost a cup of just blood, no sputum. I was put into the icu for the night just in case it happened again (it didn't). I was curious to know how many others this had happened to because the on-call pulmonary doc made sound as if it was fairly common among cf patients with lungs as bad as mine. My pft's have been hovering in between %26 and %29 for the past couple months and ive coughed up blood before. But this was the first time I have ever coughed up that much so it really freaked me out.
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Hemoptysis
- Thread starter Kyrav
- Start date
I've been on pulmozyme as long as I can remember. They did have me on the 7% hypertonic saline when i first went in, at home I only do 3%. But after I had my little episode they stopped both for a couple days.
Has it continued to happen to you even though you've stopped the pulmozyme? What really worried me about the whole thing is that I was not even doing anything to bring it on. I was sitting in my bed about to go to sleep and it had been at least 2 hours since my last treatment.
Has it continued to happen to you even though you've stopped the pulmozyme? What really worried me about the whole thing is that I was not even doing anything to bring it on. I was sitting in my bed about to go to sleep and it had been at least 2 hours since my last treatment.
I've been on pulmozyme as long as I can remember. They did have me on the 7% hypertonic saline when i first went in, at home I only do 3%. But after I had my little episode they stopped both for a couple days.
Has it continued to happen to you even though you've stopped the pulmozyme? What really worried me about the whole thing is that I was not even doing anything to bring it on. I was sitting in my bed about to go to sleep and it had been at least 2 hours since my last treatment.
Yeah, its pretty common to cough up blood.
I coughed up blood for the first time age 16. I'm 38 now.
Usually exercise causes it for me, but I've also had the sitting down - doing nothing thing and then bam, blood.
you get used to it.
normally, 2 weeks of IVs would clear it up for me.
I also have a stock of tranexamic acid which helps clot off the bleed.
I've had a few bad bleeds too, where I've gone into hospital cos I've kept coughing up blood for a prolonged period.
That was a bit scary.
But again, its controllable with the tranexamic acid and IVs.
Some people get the problem area embolized i.e. fry the problem artery/vein to seal it shut
LittleLab4CF
Super Moderator
I can really relate to that “freaked out” sensation. Especially your accurately described “nearly a cup” of blood!!! Even when we understand and are prepared for something like coughing up a lot of blood, it is little consolation when it happens to you. I didn’t even know what an hemoptysis was until I had my palm full of one.
For me, knowing and understanding helps limit anxiety. At first, with no understanding of where and why this was happening, I was dutifully scooping each clot into old script bottles, logging the time and what I felt etc. until I could be seen by my pulmonologist. The reason behind my hemoptysis was simple pleural effusion, painful but hardly what you went through. In total I had less than 50cc of blood clots and very little unclotted blood.
As far as taking clotting agents like the prescription Lysteda, brand name for tranexamic acid, this may be helpful at some point. Kyeev has a lot of knowledge and experience behind his medical management, and routinely does what he does within a margin of safety and risk. Unless you are a hematologist, any venture into taking clotting agents to limit hemoptysis needs to be a cautious path with the full participation of your medical team.
It can be savior or assassin, just be careful.
LL
For me, knowing and understanding helps limit anxiety. At first, with no understanding of where and why this was happening, I was dutifully scooping each clot into old script bottles, logging the time and what I felt etc. until I could be seen by my pulmonologist. The reason behind my hemoptysis was simple pleural effusion, painful but hardly what you went through. In total I had less than 50cc of blood clots and very little unclotted blood.
As far as taking clotting agents like the prescription Lysteda, brand name for tranexamic acid, this may be helpful at some point. Kyeev has a lot of knowledge and experience behind his medical management, and routinely does what he does within a margin of safety and risk. Unless you are a hematologist, any venture into taking clotting agents to limit hemoptysis needs to be a cautious path with the full participation of your medical team.
It can be savior or assassin, just be careful.
LL
I've had problems with hemoptysis before intermittently and have a couple episodes where I coughed up maybe half the amount of blood you had. I found that Pulmozyme always makes me cough up blood, so I don't take it. I do use 5% hypertonic saline although they reduced me to once a day because of blood.
They put me on vitamin K, which has helped me quite a bit. The pill form is extremely expensive in North America, but you can get it in liquid form for cheaper.
I hope you don't have ongoing problems with this.
They put me on vitamin K, which has helped me quite a bit. The pill form is extremely expensive in North America, but you can get it in liquid form for cheaper.
I hope you don't have ongoing problems with this.
CyrilCrodius
New member
This is inaccurate. They don't seal the artery shut. They shoot some kind of polymer on its wall to "reduce its size" (obstructing part of it) to reduce the blood flow to the lungs. What happens is that the lung arteries grow supersized due to the abnormally high flow of blood needed in our lungs to feed the inflammation so when a blood vessel bursts, it bleeds a LOT.Some people get the problem area embolized i.e. fry the problem artery/vein to seal it shut
Embolization is what fixed it for me. I regret not having it done earlier. One artery was 3 times the normal size and the other was twice the normal size. I coughed up blood a few times again after the embolization but much less of it. Now I think I've been going for months without coughing up any blood. Crossing fingers and touching wood.
Kyrav, ask your doctor to have your lung arteries checked with a radiologist and have them embolized if needed.
I hate to say it, but I'm relieved this has happened to other people. It makes me feel better to hear its not totally uncommon.
As for fixing it, when I was in the icu they said if it continued to happen they would do the whole embolizing thing. And I was put on 15mg of vitamin K the reminder of the time I was there. But since it has not happened again and my sputum hasn't even had any blood streaks or anything I'm hoping it was a one time occurrence because of a bad infection and an amount of saline I just could not tolerate.
Thank you all for your insight, I will definitely be prepared if it happens again and hopefully won't panic as much.
As for fixing it, when I was in the icu they said if it continued to happen they would do the whole embolizing thing. And I was put on 15mg of vitamin K the reminder of the time I was there. But since it has not happened again and my sputum hasn't even had any blood streaks or anything I'm hoping it was a one time occurrence because of a bad infection and an amount of saline I just could not tolerate.
Thank you all for your insight, I will definitely be prepared if it happens again and hopefully won't panic as much.