First CF Hemoptysis

Staciainaz

New member
Well... I experienced my first really scary hemoptysis yesterday. In case anyone doesn't know what that is, it's when you cough up a lot of blood. I woke up yesterday morning feeling pretty heavy, so I did my normal routine of meds - albuterol, hypertonic saline, pulmozyme and some airway clearance. About 10 minutes after I finished everything, I started coughing up blood. A LOT of blood. I have never in my 34 years, experienced that and I was truly frightened. I panicked for the first few minutes and then got myself together, remembering I've had many CF friends who have talked about the same thing. Thank God for the support of my CF family, I probably would have called 911. I did some online research and what I found was identical to what I was facing: <strong>Hemoptysis can be a direct reaction to the nebulizer treatments such as pulmozyme and hypertonic saline</strong>, which I had finished 10 minutes prior. I wasn't in any pain, I wasn't struggling to breath so I knew it couldn't have been a collapsed lung. Boy oh boy, is that scary and I feel for anyone who has to deal with that!
 

Staciainaz

New member
Well... I experienced my first really scary hemoptysis yesterday. In case anyone doesn't know what that is, it's when you cough up a lot of blood. I woke up yesterday morning feeling pretty heavy, so I did my normal routine of meds - albuterol, hypertonic saline, pulmozyme and some airway clearance. About 10 minutes after I finished everything, I started coughing up blood. A LOT of blood. I have never in my 34 years, experienced that and I was truly frightened. I panicked for the first few minutes and then got myself together, remembering I've had many CF friends who have talked about the same thing. Thank God for the support of my CF family, I probably would have called 911. I did some online research and what I found was identical to what I was facing: <strong>Hemoptysis can be a direct reaction to the nebulizer treatments such as pulmozyme and hypertonic saline</strong>, which I had finished 10 minutes prior. I wasn't in any pain, I wasn't struggling to breath so I knew it couldn't have been a collapsed lung. Boy oh boy, is that scary and I feel for anyone who has to deal with that!
 

bcl0328

New member
had to go to ICU for mine and get an embolization <img src="i/expressions/face-icon-small-blush.gif" border="0">
 

bcl0328

New member
had to go to ICU for mine and get an embolization <img src="i/expressions/face-icon-small-blush.gif" border="0">
 

Vaultboy

New member
hi staciainaz.
first of all, let me say i hope your fine now and everything is ok again.

as the theme hemoptysis is mentioned once again, id like to ask you what "a LOT" means to you.
i for myself, have coughed up blood several times in the last years but it was always really just a little bit. on the other hand when it comes the stuff like this talking of "a bit" or "a lot" sounds pretty weird. anyways.. maybe you could describe the amount of blood. (sorry to bother you with such a question )
 

Vaultboy

New member
hi staciainaz.
first of all, let me say i hope your fine now and everything is ok again.

as the theme hemoptysis is mentioned once again, id like to ask you what "a LOT" means to you.
i for myself, have coughed up blood several times in the last years but it was always really just a little bit. on the other hand when it comes the stuff like this talking of "a bit" or "a lot" sounds pretty weird. anyways.. maybe you could describe the amount of blood. (sorry to bother you with such a question )
 

CyrilCrodius

New member
Basically, Pulmozym and HS can cause hemoptysis by causing lung inflammation. Note that chest pain is listed too as a side effect for Pulmozym (no clue about HS), which is another indication that it can cause an inflammatory reaction. You say that you were feeling heavy, I assume you had more inflammation than usual. You also say that you did your "normal" routine, so it's not your first time taking Pulmozym or HS, thus you have taken it without problem before. I don't think Pulmozym or HS are the cause. Inflammation, maybe due to an exacerbation might be the cause. I had hemoptysis since I was 14 years old (9 years ago!). It started happening when I was using turbohalers. I suspect that it was the suction was causing bleedings with inflamed lungs. The frequency of hemoptysis episodes has always been very variable but it increased over the years, as did the amount of blood when it happened. I would get them every 6-3-2-1 months, sometimes it would happen many times within a month, sometimes it would happen that I would have many episodes in a week then it would go away for 2 months, etc. The amount ranged from a tablespoon to many. The most serious episode I had was 2 years ago. I coughed up probably over 100mL of blood. It was pretty distressing. It really felt like the bleeding lung was drowning in blood. I couldn't take one breath without exhaling blood. Unlike the so many many many many episodes I had over the 7 years prior to that, it did not look like it was going to stop. I think it lasted 3 minutes of coughing up blood with every breath non-stop. That's when they decided to go see what was happening in there and decided that I needed an embolization (after 7 years of coughing up blood... no sh**!). The bronchoscopy showed nothing, but the X rays on the table in radiology while they were doing the bilateral embolization showed that my right lung artery was thrice as big as usual, while the left lung artery was twice as big as usual. That's caused by the chronic inflammation, a lot of blood is needed to feed that inflammation, so it causes arteries to develop and become bigger. Don't do like I did and don't wait for them to do something about it. Ask for your lungs to be checked. Ideally, you should go right now. You have to go the same day for them to be able to go see where it comes from.

Edit : It's very important that you stay calm when that happens. Higher heart rate and higher blood pressure are going to make it worse.

Also, they say to go to the ICU as soon as you cough up more than 3 tablespoons. I don't. I would always be in ICU if I did. I judge the severity of it by the amount and the consistency of the blood. Sometimes I will cough up more than 3 teaspoons of red but also thick blood, as if it was mixed with uninfected mucus. Of course that's not a good sign, but that's not something I get alarmed about as I know that those go away. It's when I cough up liquid, almost pure blood in greater quantity that I judge it as being more serious and consider going to the ER.Something I noticed too is that in the last 4 years, they often happened after having pleurisy. It's as if the inflamed tissues were bursting and "flushing the blood out"... not like menses of course, but in the way that once the blood has been evacuated, the pain from the inflammation is reduced by a lot. This isn't good at all though, since I think it's the kind of things that leave permanent damage...
 

CyrilCrodius

New member
Basically, Pulmozym and HS can cause hemoptysis by causing lung inflammation. Note that chest pain is listed too as a side effect for Pulmozym (no clue about HS), which is another indication that it can cause an inflammatory reaction. You say that you were feeling heavy, I assume you had more inflammation than usual. You also say that you did your "normal" routine, so it's not your first time taking Pulmozym or HS, thus you have taken it without problem before. I don't think Pulmozym or HS are the cause. Inflammation, maybe due to an exacerbation might be the cause. I had hemoptysis since I was 14 years old (9 years ago!). It started happening when I was using turbohalers. I suspect that it was the suction was causing bleedings with inflamed lungs. The frequency of hemoptysis episodes has always been very variable but it increased over the years, as did the amount of blood when it happened. I would get them every 6-3-2-1 months, sometimes it would happen many times within a month, sometimes it would happen that I would have many episodes in a week then it would go away for 2 months, etc. The amount ranged from a tablespoon to many. The most serious episode I had was 2 years ago. I coughed up probably over 100mL of blood. It was pretty distressing. It really felt like the bleeding lung was drowning in blood. I couldn't take one breath without exhaling blood. Unlike the so many many many many episodes I had over the 7 years prior to that, it did not look like it was going to stop. I think it lasted 3 minutes of coughing up blood with every breath non-stop. That's when they decided to go see what was happening in there and decided that I needed an embolization (after 7 years of coughing up blood... no sh**!). The bronchoscopy showed nothing, but the X rays on the table in radiology while they were doing the bilateral embolization showed that my right lung artery was thrice as big as usual, while the left lung artery was twice as big as usual. That's caused by the chronic inflammation, a lot of blood is needed to feed that inflammation, so it causes arteries to develop and become bigger. Don't do like I did and don't wait for them to do something about it. Ask for your lungs to be checked. Ideally, you should go right now. You have to go the same day for them to be able to go see where it comes from.

Edit : It's very important that you stay calm when that happens. Higher heart rate and higher blood pressure are going to make it worse.

Also, they say to go to the ICU as soon as you cough up more than 3 tablespoons. I don't. I would always be in ICU if I did. I judge the severity of it by the amount and the consistency of the blood. Sometimes I will cough up more than 3 teaspoons of red but also thick blood, as if it was mixed with uninfected mucus. Of course that's not a good sign, but that's not something I get alarmed about as I know that those go away. It's when I cough up liquid, almost pure blood in greater quantity that I judge it as being more serious and consider going to the ER.Something I noticed too is that in the last 4 years, they often happened after having pleurisy. It's as if the inflamed tissues were bursting and "flushing the blood out"... not like menses of course, but in the way that once the blood has been evacuated, the pain from the inflammation is reduced by a lot. This isn't good at all though, since I think it's the kind of things that leave permanent damage...
 

lilmac7

New member
The first time I had it was in my sleep. I literally started dreaming some foolishness like I was drowning and could feel the gurgling in my chest as I breathed in water but in reality it was the blood in my lungs. I jumped up out of the dream coughing and what I coughed up in my mouth I thought to be quite runny, leaned over and grabbed the garbage can to spit it out cause it was the closest thing to me at the time. After that I rolled over to go back to bed and the gurgling was still there and it put me into coughing again. At this time I thought it was odd so got out the bed coughing to the bathroom and when I spit it out it was practically pure blood. I got myself together without panicking as I thought if I panic it'll just make my heart race more and therefore bleed worse. I also remembered about taking Lysine for it which I popped 2 before going to the hospital. I live close to the hospital thankfully so got my GF to take me, I'd get there quicker that way than for them to get to me and get me there. By the time I got there and seen the lysine had already cut the amount of blood I was coughing up drastically. I ALWAYS keep some on hand ever since and for bad bleeds it does wonders to stop or get it under control.
 

lilmac7

New member
The first time I had it was in my sleep. I literally started dreaming some foolishness like I was drowning and could feel the gurgling in my chest as I breathed in water but in reality it was the blood in my lungs. I jumped up out of the dream coughing and what I coughed up in my mouth I thought to be quite runny, leaned over and grabbed the garbage can to spit it out cause it was the closest thing to me at the time. After that I rolled over to go back to bed and the gurgling was still there and it put me into coughing again. At this time I thought it was odd so got out the bed coughing to the bathroom and when I spit it out it was practically pure blood. I got myself together without panicking as I thought if I panic it'll just make my heart race more and therefore bleed worse. I also remembered about taking Lysine for it which I popped 2 before going to the hospital. I live close to the hospital thankfully so got my GF to take me, I'd get there quicker that way than for them to get to me and get me there. By the time I got there and seen the lysine had already cut the amount of blood I was coughing up drastically. I ALWAYS keep some on hand ever since and for bad bleeds it does wonders to stop or get it under control.
 

beleache

New member
Hi Stacia,
Yes, It is very scary.. Did you let your dr. know ? When I have Hemoptysis my dr. usually will hold certain nebs & also airway clearance. Also if bleeding continues they usually add vitamin K .. Hope you are feeling better now..
<img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 

beleache

New member
Hi Stacia,
Yes, It is very scary.. Did you let your dr. know ? When I have Hemoptysis my dr. usually will hold certain nebs & also airway clearance. Also if bleeding continues they usually add vitamin K .. Hope you are feeling better now..
<img src="i/expressions/face-icon-small-smile.gif" border="0"> joni
 

Tisha

New member
It is indeed scary. The first time that was actual pure blood was for me about two years ago. Doctors said if you caugh up more than half a cup, you should go to the ER. I was once embolized.
Last night I was feeling fine (but had had coughing fits several times over the past week), and had just braided my hair. I was brushing my teeth and I saw something in my ear (no idea how that little piece of plastic got there!) but it looked like an insect so I freaked out and went to get someone to check what it was. Turned out to be just a plastic ring, but I had gotten so freaked out I coughed - and that was pure blood. A total of 100 ml. Oddly I was feeling just fine! So maybe just a weak vein/artery from all the previous coughing (not that day, but that week).
Now with what you guys are saying, the bleeding episodes have started about 3 years after starting with saline, maybe 10 years after starting the pulmozyme. But can it be related?? (I feel like quitting, yesterday the pulmozyme gave me a mild bronchospasm).
Off I go now to breathe some lavendel, that sooths the lungs and has helped a lot!
 

Tisha

New member
It is indeed scary. The first time that was actual pure blood was for me about two years ago. Doctors said if you caugh up more than half a cup, you should go to the ER. I was once embolized.
Last night I was feeling fine (but had had coughing fits several times over the past week), and had just braided my hair. I was brushing my teeth and I saw something in my ear (no idea how that little piece of plastic got there!) but it looked like an insect so I freaked out and went to get someone to check what it was. Turned out to be just a plastic ring, but I had gotten so freaked out I coughed - and that was pure blood. A total of 100 ml. Oddly I was feeling just fine! So maybe just a weak vein/artery from all the previous coughing (not that day, but that week).
Now with what you guys are saying, the bleeding episodes have started about 3 years after starting with saline, maybe 10 years after starting the pulmozyme. But can it be related?? (I feel like quitting, yesterday the pulmozyme gave me a mild bronchospasm).
Off I go now to breathe some lavendel, that sooths the lungs and has helped a lot!
 

Hardak

New member
Yeah it can freak you out the first time, if you've had a good sized amount of blood come up and not experienced with it be-for, at least checking in with your CF clinic is a good idea. You might want to look at spacing out some of your morning meds a little if this becomes an on going problem. Any CF clinic will tell you STOP RPT for the next 3 days after experiencing hemoptysis. You don't want to break up any blood clots that may have formed to stop your leak.

Tisha I think you may be right about a weak vane or spot in your lungs. I know I've got a chunk of scar tissue that is where I'm most likely to start bleeding from. Its also the first area to react to irritants. It also acts up a good week be-for heavy infection hits me. My first confirmed round of hemoptysis was when I was 19-20 spent 36 hours coughing up strait balls of blood. Which left me with that sensitive scar, Was also Tobi dose that triggered it.

That being said HTS can cause chest pain.
 

Hardak

New member
Yeah it can freak you out the first time, if you've had a good sized amount of blood come up and not experienced with it be-for, at least checking in with your CF clinic is a good idea. You might want to look at spacing out some of your morning meds a little if this becomes an on going problem. Any CF clinic will tell you STOP RPT for the next 3 days after experiencing hemoptysis. You don't want to break up any blood clots that may have formed to stop your leak.

Tisha I think you may be right about a weak vane or spot in your lungs. I know I've got a chunk of scar tissue that is where I'm most likely to start bleeding from. Its also the first area to react to irritants. It also acts up a good week be-for heavy infection hits me. My first confirmed round of hemoptysis was when I was 19-20 spent 36 hours coughing up strait balls of blood. Which left me with that sensitive scar, Was also Tobi dose that triggered it.

That being said HTS can cause chest pain.
 

athletixbc

New member
Yes, the first time you cough up blood is usually a freak out moment, but you'll get used to it. I'm 36, dx at 20, and I've coughed up blood so many times that I just call the hospital and speak to respirologist on call and they ask me, on a scale of 1 to 10, with 10 being the worst you've ever had, how bad is it? Then they judge if they want me to come in or not. lol Usually it's 2-3 tablespoons and then it stops. Like Cyril above, it's usually associated with an episode of pleural pain, but it happens occasionally after nebs.
 

athletixbc

New member
Yes, the first time you cough up blood is usually a freak out moment, but you'll get used to it. I'm 36, dx at 20, and I've coughed up blood so many times that I just call the hospital and speak to respirologist on call and they ask me, on a scale of 1 to 10, with 10 being the worst you've ever had, how bad is it? Then they judge if they want me to come in or not. lol Usually it's 2-3 tablespoons and then it stops. Like Cyril above, it's usually associated with an episode of pleural pain, but it happens occasionally after nebs.
 

rubyroselee

New member
Hi Stacia,

I had my first episode of hemoptysis last winter. It was so scary! The odd thing is that it started while I was at work, while I was just sitting there at my computer (not even coughing), and then the bleed started. I was actually feeling really good at the time and had just finished my first month of Cayston. I think the worst thing about it for me was not really knowing what to do, other than to bolt out of the office. The bleeding stopped by the time I got to my car, but it was definitely a scary experience.

Make sure you call your CF clinic and let them know it happened. I was prescribed vitamin K and then told to stop treatments and CPT for 24 hrs.

Sorry it happened to you. There's a lot of us who know how you feel though.
 

rubyroselee

New member
Hi Stacia,

I had my first episode of hemoptysis last winter. It was so scary! The odd thing is that it started while I was at work, while I was just sitting there at my computer (not even coughing), and then the bleed started. I was actually feeling really good at the time and had just finished my first month of Cayston. I think the worst thing about it for me was not really knowing what to do, other than to bolt out of the office. The bleeding stopped by the time I got to my car, but it was definitely a scary experience.

Make sure you call your CF clinic and let them know it happened. I was prescribed vitamin K and then told to stop treatments and CPT for 24 hrs.

Sorry it happened to you. There's a lot of us who know how you feel though.
 
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