Hey. I want to know if there are any other CFers whose lungs bleed on a regular basis. Mine do it ALL the time. My hospital did a bronch. and couldn't find a source or even an area that looked irritated. Does anyone else deal with this? If so what do you do. The only thing my hospital said was to go to the ER if I cough up more than 1/2 a CUP!! Thanks for any advice.
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bleeding lungs
- Thread starter anonymous
- Start date
I have had small bleeds and horribly large bleeds that required surgery( twice) . I take mephyton ( vitamin K) daily to help with the bleeds. I also went on oral birth control for a while after my second embolization to help control the bleeding. The best advice i could give is to remain calm during a lung bleed, also staying upright may be a good idea. I noticed that most of the time when i had any bleeding is when i lay flat. I now sleep on a wedge pillow to avoid laying flat completely. I still have little small bleeds here and there, and sometimes streaking for days or weeks at a time. There seems to be no rhyme or reason to why some of us have bleeding and some dont.<img src="i/expressions/face-icon-small-confused.gif" border="0"> If you are female you may notice lung bleeds more frequently when your menstral cycle comes around ( i know i do) . Kind of odd huh? good luck<img src="i/expressions/face-icon-small-smile.gif" border="0">
~Diane 39 / cf / diabetes / b.cepacia
~Diane 39 / cf / diabetes / b.cepacia
Hi
Mine bleed alot too. I cough up blood everday from coughing fits and breaking blood vessels in my lungs and throat. I also have huge bleeds where i cough just blood up for about 1o min. Its scary. I went to the hospital once because it wouldnt stop but it didn once i got there.
I also take vit. k as I have cf related liver disease and my clotting is low. I find if i miss it a few days I bleed easier and longer. They dont really know why i bleed either. They tell me its probably weakening of the lung lining and stress from coughing. Unless it wont stop im just to wait it out.
I find mine happens from laying flat or doing heavy breathing(excersise). Sometimes i wake up in the middle of the night and it feels like im drowning cuz my lungs and throat fill up. However unless im bleeding massivly they cant really do anything.
Kris 22cf/diabetes/liver disease/pre transplant
Mine bleed alot too. I cough up blood everday from coughing fits and breaking blood vessels in my lungs and throat. I also have huge bleeds where i cough just blood up for about 1o min. Its scary. I went to the hospital once because it wouldnt stop but it didn once i got there.
I also take vit. k as I have cf related liver disease and my clotting is low. I find if i miss it a few days I bleed easier and longer. They dont really know why i bleed either. They tell me its probably weakening of the lung lining and stress from coughing. Unless it wont stop im just to wait it out.
I find mine happens from laying flat or doing heavy breathing(excersise). Sometimes i wake up in the middle of the night and it feels like im drowning cuz my lungs and throat fill up. However unless im bleeding massivly they cant really do anything.
Kris 22cf/diabetes/liver disease/pre transplant
I bleed as well too..though not everyday. Mostly it just happens out of nowhere??? I stopped going to ER because around here because they just sit me in a room and give me a small bucket to cough into. It's happened so often to me I kinda know now when its serious and when its not. I've had one surgery so far to stop the bleeding, I don't remember much of it because I passed out from loosing so much blood-since then I havent had any BAD ones and if I cough up more than a cup, I'll give my doctor a call and see what he wants to do. My younger brother has CF as well, and he has NEVER coughed up any blood?? I don't think there is any rhyme or reason to it...some bleed and some don't.
<blockquote>Quote<br><hr><i>Originally posted by: <b>Anonymous</b></i><br>Hey. I want to know if there are any other CFers whose lungs bleed on a regular basis. Mine do it ALL the time. My hospital did a bronch. and couldn't find a source or even an area that looked irritated. Does anyone else deal with this? If so what do you do. The only thing my hospital said was to go to the ER if I cough up more than 1/2 a CUP!! Thanks for any advice.<hr></blockquote>
I have occasionaly bleeds, but nowhere near regulare bleeding. Maby you should suggest staying over night to your doc, or for a few days, so that they can monitor you well it's happening? Maby they can catch it at the moment, and find out what's wrong that way.
I have occasionaly bleeds, but nowhere near regulare bleeding. Maby you should suggest staying over night to your doc, or for a few days, so that they can monitor you well it's happening? Maby they can catch it at the moment, and find out what's wrong that way.
bowlingguy
New member
<blockquote>Quote<br><hr><i>Originally posted by: <b>dresapp</b></i><br>Hi
I find mine happens from laying flat or doing heavy breathing(excersise). Sometimes i wake up in the middle of the night and it feels like im drowning cuz my lungs and throat fill up. However unless im bleeding massivly they cant really do anything.
Kris 22cf/diabetes/liver disease/pre transplant<hr></blockquote>
its nice to hear someone finally say they also get bleeding when they lie flat, this has always been the 1 thing i need to avoid when trying not to have any bleeds. I would always tell my doctor that i bleed when i lie on my back, only 1 physician said that was normal due to acute upper airway restrictions or something, the rest just went hmmmm, and i goto usc and chridlens hospital LA which both have very very big CF centers...I also take vit K but only when streaking heavily or having large bleeds, back when i was 17-20 i was having huge bleeding each time I had infection which was about twice a year, the bleeding would be roughly 2-3 cups a day, and I would alwys try to get it to clot at home sleeping sitting up, not coughing much just doing my thing, sometimes it would sometimes it would take antibiotics to stop the infection and help strengthen the blood vessel walls, there were 2-3 times in my life my hebaglobin got down to 8 or just above 8.2 i think it was and they waned to transfuse me, which I declined and lucky it stopped the next day. just a few weeks ago I had some hemoptosis about 1/2 cup twice a day for about 3-4 days, again since im 33 now i dont try make it clot at home anymore if it lasts more then a day I try to get antibiotics which i did and it stopped after about 6 days, I have heard of much worse cases of this though where it wouldnt clot at all, and those 5-15 min bleeds some of us have can turn into 30-60 min bleeds, so if your at home doing this be very cautios and be sure someone is there to drive you to the hospital if it doesnt clot by 15 mins or so...
god bless
I find mine happens from laying flat or doing heavy breathing(excersise). Sometimes i wake up in the middle of the night and it feels like im drowning cuz my lungs and throat fill up. However unless im bleeding massivly they cant really do anything.
Kris 22cf/diabetes/liver disease/pre transplant<hr></blockquote>
its nice to hear someone finally say they also get bleeding when they lie flat, this has always been the 1 thing i need to avoid when trying not to have any bleeds. I would always tell my doctor that i bleed when i lie on my back, only 1 physician said that was normal due to acute upper airway restrictions or something, the rest just went hmmmm, and i goto usc and chridlens hospital LA which both have very very big CF centers...I also take vit K but only when streaking heavily or having large bleeds, back when i was 17-20 i was having huge bleeding each time I had infection which was about twice a year, the bleeding would be roughly 2-3 cups a day, and I would alwys try to get it to clot at home sleeping sitting up, not coughing much just doing my thing, sometimes it would sometimes it would take antibiotics to stop the infection and help strengthen the blood vessel walls, there were 2-3 times in my life my hebaglobin got down to 8 or just above 8.2 i think it was and they waned to transfuse me, which I declined and lucky it stopped the next day. just a few weeks ago I had some hemoptosis about 1/2 cup twice a day for about 3-4 days, again since im 33 now i dont try make it clot at home anymore if it lasts more then a day I try to get antibiotics which i did and it stopped after about 6 days, I have heard of much worse cases of this though where it wouldnt clot at all, and those 5-15 min bleeds some of us have can turn into 30-60 min bleeds, so if your at home doing this be very cautios and be sure someone is there to drive you to the hospital if it doesnt clot by 15 mins or so...
god bless
kellimylove
New member
Thanks for your advice. I have been checking this site daily to check responses and I truly appreciate you taking time to let me know how you are. I usually do clot quickly 15-30mins. And then I'll prop myself up so I can get to sleep. It used to be scary now I'm used to it. But I'm a little relieved to know I'm not alone. Mine can happen at any time. Driving, swimming, but especially when I lay down at night. My husband is usually here so he helps and he calms me down. Thanks again for your advice.
Kelli
Kelli
A number of people have posted about blood and I am beginning to wonder if I am the only ones who's doctor believes that the bleeding is from Aspergillus. Since I am on Sporonox all the time now the bleeds have nearly stopped, the only time they do show is when I do TOBI, or use RubberCement. I have heard many docs believe that Aspergillus doesn't cause much damage or affect the lungs too any extent. I can tell you I had a year where it was so constant to cough blood that I was getting depressed. Since I started Sporonox (Itraconazole) things are much, much better. I am just starting Voriconazole in place of Sporonox, it has had great study results getting rid of Aspergillus.
Sarah
27 with CF
Sarah
27 with CF