first episode of hemoptysis

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rubyroselee

New member
Caroline- Wow, that must have been scary on the cruise ship! I would have been terrified. Yeah, I'm in the same boat as you - I just got off Cayston and was feeling pretty good. But I'll still take the Levaquin and see how it goes.

JMiller- Yes, you are right, my PFTs are still pretty good. Maybe it does have to do with hormones, who knows. I talked to one of my other CF friends the other night who said she gets lung bleeds every month due to her hormones.

Mamerth- Ugh, sorry to hear about your bleed yesterday. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Hope you're feeling better now.
 
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rubyroselee

New member
Caroline- Wow, that must have been scary on the cruise ship! I would have been terrified. Yeah, I'm in the same boat as you - I just got off Cayston and was feeling pretty good. But I'll still take the Levaquin and see how it goes.

JMiller- Yes, you are right, my PFTs are still pretty good. Maybe it does have to do with hormones, who knows. I talked to one of my other CF friends the other night who said she gets lung bleeds every month due to her hormones.

Mamerth- Ugh, sorry to hear about your bleed yesterday. <img src="i/expressions/face-icon-small-sad.gif" border="0"> Hope you're feeling better now.
 
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mamerth

New member
I am doing fine. Mine only lasted for 24 hours.... only spots and streaks. I am still checking my sputum just to make sure. I feel great except for a some brochospams. It took forever for the clinic to call out a prescription and then I found out the cost of it... can't afford it and my insurance won't cover it. I am going to keep a watching on things. I am sleeping elevated, I put an ice pack on my chest at the first episode of bleeding and TRYING to keep my blood pressure down. I have also taken a break from CPT. I have no other change in sputum and I have LOTS of energy. I don't feel sick at all. I am almost convinced that it is due to hormones. I am heading down the road to menopause and my cycles are all over the place.
 
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mamerth

New member
I am doing fine. Mine only lasted for 24 hours.... only spots and streaks. I am still checking my sputum just to make sure. I feel great except for a some brochospams. It took forever for the clinic to call out a prescription and then I found out the cost of it... can't afford it and my insurance won't cover it. I am going to keep a watching on things. I am sleeping elevated, I put an ice pack on my chest at the first episode of bleeding and TRYING to keep my blood pressure down. I have also taken a break from CPT. I have no other change in sputum and I have LOTS of energy. I don't feel sick at all. I am almost convinced that it is due to hormones. I am heading down the road to menopause and my cycles are all over the place.
 
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Megok26

New member
I get this too, in fact have been having it all week. Comes out of no where you are right and is annoying because you can't control it, it drives me nuts, cough up a little here and there, sometimes after a workout.! I had a cold over the weekend and I think this had something to do with it even though I didn't have a cough and have been feeling fine. It seems to happen to me more in the winter too I don't know if it is a combination of the dry air dry heat or what but this winter I have had it the worst. I can go out to eat be fine then walk outside into the cold sit down in the car and hear the gurgle, I guess the difference in temp sometimes shocks your system and makes you cough but sometimes it will make me cough blood. I feel your pain, for me which might sound crazy it is one of the worst parts about CF makes me nervous to go anywhere because I could cough up blood out of no where. Ughh frustrating! Drinking some OJ right when it happens sometimes helps too the acid cuts the flem
 
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Megok26

New member
I get this too, in fact have been having it all week. Comes out of no where you are right and is annoying because you can't control it, it drives me nuts, cough up a little here and there, sometimes after a workout.! I had a cold over the weekend and I think this had something to do with it even though I didn't have a cough and have been feeling fine. It seems to happen to me more in the winter too I don't know if it is a combination of the dry air dry heat or what but this winter I have had it the worst. I can go out to eat be fine then walk outside into the cold sit down in the car and hear the gurgle, I guess the difference in temp sometimes shocks your system and makes you cough but sometimes it will make me cough blood. I feel your pain, for me which might sound crazy it is one of the worst parts about CF makes me nervous to go anywhere because I could cough up blood out of no where. Ughh frustrating! Drinking some OJ right when it happens sometimes helps too the acid cuts the flem
 
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JustDucky

New member
My first bleed wasn't that much, but it happened an odd way. I was at my pulmo's office and was to give a routine sputum. I felt junky and gurgly, so I knew I would be able to produce something on demand. Imagine my surprise after I hacked up a sample and looked in the cup to see very bloody sputum, and bright red. Talk about hemoptysis on demand! At least I was able to quantify my bleeding to the doc....Since then, I have had a few more minor bleeds, but usually with infection.

Jenn 40 w/CF
 
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JustDucky

New member
My first bleed wasn't that much, but it happened an odd way. I was at my pulmo's office and was to give a routine sputum. I felt junky and gurgly, so I knew I would be able to produce something on demand. Imagine my surprise after I hacked up a sample and looked in the cup to see very bloody sputum, and bright red. Talk about hemoptysis on demand! At least I was able to quantify my bleeding to the doc....Since then, I have had a few more minor bleeds, but usually with infection.

Jenn 40 w/CF
 
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rubyroselee

New member
Megok- I agree, it's frustrating because you worry about where you'll be when you start coughing up blood. I was at work when it happened, which was a little freaky for me. Luckily it was the end of the day and time for me to leave anyways, but I still hated that it happened there. But now I have a little bit more worry about the if/when it happens again :\

Jenn- Well, that's a good place for it to happen I would say! At least you were already under medical care in the event it was a bad bleed and you were able to quantify how much it was. From what I've heard, it is likely to happen with infection; although for me, I had just finished Cayston and was feeling great. But regardless, it's still annoying.
 
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rubyroselee

New member
Megok- I agree, it's frustrating because you worry about where you'll be when you start coughing up blood. I was at work when it happened, which was a little freaky for me. Luckily it was the end of the day and time for me to leave anyways, but I still hated that it happened there. But now I have a little bit more worry about the if/when it happens again :\

Jenn- Well, that's a good place for it to happen I would say! At least you were already under medical care in the event it was a bad bleed and you were able to quantify how much it was. From what I've heard, it is likely to happen with infection; although for me, I had just finished Cayston and was feeling great. But regardless, it's still annoying.
 
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kmaried

New member
Hey -

A few things -

- easier said than done, but when you have a bleed try not to panic. It only raises your blood pressure and makes you bleed more! I also try to stay very still. I don't want to move around and provoke a cough which could increase bleeding.

- I've definitely had them at work. I just went to the bathroom, and sat still for a few minutes, and then returned to work. If you have a big ER type bleed, you're not going to be able to drive yourself to the ER, so I figure there is no reason to rush out.

- I have them fairly often and there is no correlation to infection. I just stay on vitamin K all the time. I also take L-Lyesine because someone once said it helps strengthen the walls of blood vessels (not really sure if its made a difference, but makes me feel better anyway). I don't let me dr know about every one since I do have them frequently - just if one is worse, or they're more frequent. I was having them too frequently for a bit, so had a whole ctscan done to consider an embolization... and then I didn't have one for a few months! So VERY unpredictable...
 
K

kmaried

New member
Hey -

A few things -

- easier said than done, but when you have a bleed try not to panic. It only raises your blood pressure and makes you bleed more! I also try to stay very still. I don't want to move around and provoke a cough which could increase bleeding.

- I've definitely had them at work. I just went to the bathroom, and sat still for a few minutes, and then returned to work. If you have a big ER type bleed, you're not going to be able to drive yourself to the ER, so I figure there is no reason to rush out.

- I have them fairly often and there is no correlation to infection. I just stay on vitamin K all the time. I also take L-Lyesine because someone once said it helps strengthen the walls of blood vessels (not really sure if its made a difference, but makes me feel better anyway). I don't let me dr know about every one since I do have them frequently - just if one is worse, or they're more frequent. I was having them too frequently for a bit, so had a whole ctscan done to consider an embolization... and then I didn't have one for a few months! So VERY unpredictable...
 
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