Hairgirl, Do you ever experience small (under 2 Tablespoon) bleeds anymore...or for you was it once they got big they stayed big. Also do you have multiple lobes that bleed? Have you altered your sleeping arrangements to better accomodate your lung position (I'm assuming laying on your back is one of your triggers). I ask because I'm looking for some 'accessory' for my bed because a mass of pillows that I currently prop myself on messes with my back and neck.
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Treating Hemoptysis?
- Thread starter CowTown
- Start date
Hi
My first bleed was about 5 months ago. I coughed up about 1/3 cup. After that it was about 1 x a month. This last month however, I would wake up in the middle of the night just starting to cough blood. I figured out it was triggered when I laid on my side or stomach.
To treat it, I was put on 2 oral anitbiotics, prednisone (steroid), and vitamin K pills. It was also suggested that I bump up my albuterol to 3x's a day instead of 2. After a few days of coughing up blood everynight, it stopped. I was not taken off any meds and there was no change in my vest regimen.
I have finished my course of antibiotics....and no blood yet, but not really feeling too good, so might have to do IV's this month.
Hope this helps!
Laura
25 w/ CF
My first bleed was about 5 months ago. I coughed up about 1/3 cup. After that it was about 1 x a month. This last month however, I would wake up in the middle of the night just starting to cough blood. I figured out it was triggered when I laid on my side or stomach.
To treat it, I was put on 2 oral anitbiotics, prednisone (steroid), and vitamin K pills. It was also suggested that I bump up my albuterol to 3x's a day instead of 2. After a few days of coughing up blood everynight, it stopped. I was not taken off any meds and there was no change in my vest regimen.
I have finished my course of antibiotics....and no blood yet, but not really feeling too good, so might have to do IV's this month.
Hope this helps!
Laura
25 w/ CF
Hi
My first bleed was about 5 months ago. I coughed up about 1/3 cup. After that it was about 1 x a month. This last month however, I would wake up in the middle of the night just starting to cough blood. I figured out it was triggered when I laid on my side or stomach.
To treat it, I was put on 2 oral anitbiotics, prednisone (steroid), and vitamin K pills. It was also suggested that I bump up my albuterol to 3x's a day instead of 2. After a few days of coughing up blood everynight, it stopped. I was not taken off any meds and there was no change in my vest regimen.
I have finished my course of antibiotics....and no blood yet, but not really feeling too good, so might have to do IV's this month.
Hope this helps!
Laura
25 w/ CF
My first bleed was about 5 months ago. I coughed up about 1/3 cup. After that it was about 1 x a month. This last month however, I would wake up in the middle of the night just starting to cough blood. I figured out it was triggered when I laid on my side or stomach.
To treat it, I was put on 2 oral anitbiotics, prednisone (steroid), and vitamin K pills. It was also suggested that I bump up my albuterol to 3x's a day instead of 2. After a few days of coughing up blood everynight, it stopped. I was not taken off any meds and there was no change in my vest regimen.
I have finished my course of antibiotics....and no blood yet, but not really feeling too good, so might have to do IV's this month.
Hope this helps!
Laura
25 w/ CF
Hi
My first bleed was about 5 months ago. I coughed up about 1/3 cup. After that it was about 1 x a month. This last month however, I would wake up in the middle of the night just starting to cough blood. I figured out it was triggered when I laid on my side or stomach.
To treat it, I was put on 2 oral anitbiotics, prednisone (steroid), and vitamin K pills. It was also suggested that I bump up my albuterol to 3x's a day instead of 2. After a few days of coughing up blood everynight, it stopped. I was not taken off any meds and there was no change in my vest regimen.
I have finished my course of antibiotics....and no blood yet, but not really feeling too good, so might have to do IV's this month.
Hope this helps!
Laura
25 w/ CF
My first bleed was about 5 months ago. I coughed up about 1/3 cup. After that it was about 1 x a month. This last month however, I would wake up in the middle of the night just starting to cough blood. I figured out it was triggered when I laid on my side or stomach.
To treat it, I was put on 2 oral anitbiotics, prednisone (steroid), and vitamin K pills. It was also suggested that I bump up my albuterol to 3x's a day instead of 2. After a few days of coughing up blood everynight, it stopped. I was not taken off any meds and there was no change in my vest regimen.
I have finished my course of antibiotics....and no blood yet, but not really feeling too good, so might have to do IV's this month.
Hope this helps!
Laura
25 w/ CF
F
fr3ak
Guest
I started coughing blood from 2 years old (really early)
I started with just streaking to full bouts of cups and litres, back in the day I was told not to worry about it, and of course became complacent...
When moving to my current location I was informed that you can in fact bleed to death... (huge shock to the system considering I had been bleeding now for 20 odd years)
I had my first embolization when I was 21 which resulted in a anaphalaxis (sp?) due to an unknown allergy to the contract, because of this they could only block off 7 of the bleeders...I continued to bleed straight after my embolization..
again the bleeding became progressively worse, but there wasnt a lot that could be done
3 years prior to my tx I was back to coughing a cup a day, and due to my reaction another embolization was only going to be used as a very last resort.... and if they were to do one they had cardioligist and every other medical team on stand by to treat the whole anaphalaxis..
I was put on a drug called Transanemic acid (sp?) which clots the blood it had to be monitored strictly but it help....
I will see if I can find an old bottle for the correct spelling LOL
I started with just streaking to full bouts of cups and litres, back in the day I was told not to worry about it, and of course became complacent...
When moving to my current location I was informed that you can in fact bleed to death... (huge shock to the system considering I had been bleeding now for 20 odd years)
I had my first embolization when I was 21 which resulted in a anaphalaxis (sp?) due to an unknown allergy to the contract, because of this they could only block off 7 of the bleeders...I continued to bleed straight after my embolization..
again the bleeding became progressively worse, but there wasnt a lot that could be done
3 years prior to my tx I was back to coughing a cup a day, and due to my reaction another embolization was only going to be used as a very last resort.... and if they were to do one they had cardioligist and every other medical team on stand by to treat the whole anaphalaxis..
I was put on a drug called Transanemic acid (sp?) which clots the blood it had to be monitored strictly but it help....
I will see if I can find an old bottle for the correct spelling LOL
F
fr3ak
Guest
I started coughing blood from 2 years old (really early)
I started with just streaking to full bouts of cups and litres, back in the day I was told not to worry about it, and of course became complacent...
When moving to my current location I was informed that you can in fact bleed to death... (huge shock to the system considering I had been bleeding now for 20 odd years)
I had my first embolization when I was 21 which resulted in a anaphalaxis (sp?) due to an unknown allergy to the contract, because of this they could only block off 7 of the bleeders...I continued to bleed straight after my embolization..
again the bleeding became progressively worse, but there wasnt a lot that could be done
3 years prior to my tx I was back to coughing a cup a day, and due to my reaction another embolization was only going to be used as a very last resort.... and if they were to do one they had cardioligist and every other medical team on stand by to treat the whole anaphalaxis..
I was put on a drug called Transanemic acid (sp?) which clots the blood it had to be monitored strictly but it help....
I will see if I can find an old bottle for the correct spelling LOL
I started with just streaking to full bouts of cups and litres, back in the day I was told not to worry about it, and of course became complacent...
When moving to my current location I was informed that you can in fact bleed to death... (huge shock to the system considering I had been bleeding now for 20 odd years)
I had my first embolization when I was 21 which resulted in a anaphalaxis (sp?) due to an unknown allergy to the contract, because of this they could only block off 7 of the bleeders...I continued to bleed straight after my embolization..
again the bleeding became progressively worse, but there wasnt a lot that could be done
3 years prior to my tx I was back to coughing a cup a day, and due to my reaction another embolization was only going to be used as a very last resort.... and if they were to do one they had cardioligist and every other medical team on stand by to treat the whole anaphalaxis..
I was put on a drug called Transanemic acid (sp?) which clots the blood it had to be monitored strictly but it help....
I will see if I can find an old bottle for the correct spelling LOL
F
fr3ak
Guest
I started coughing blood from 2 years old (really early)
I started with just streaking to full bouts of cups and litres, back in the day I was told not to worry about it, and of course became complacent...
When moving to my current location I was informed that you can in fact bleed to death... (huge shock to the system considering I had been bleeding now for 20 odd years)
I had my first embolization when I was 21 which resulted in a anaphalaxis (sp?) due to an unknown allergy to the contract, because of this they could only block off 7 of the bleeders...I continued to bleed straight after my embolization..
again the bleeding became progressively worse, but there wasnt a lot that could be done
3 years prior to my tx I was back to coughing a cup a day, and due to my reaction another embolization was only going to be used as a very last resort.... and if they were to do one they had cardioligist and every other medical team on stand by to treat the whole anaphalaxis..
I was put on a drug called Transanemic acid (sp?) which clots the blood it had to be monitored strictly but it help....
I will see if I can find an old bottle for the correct spelling LOL
I started with just streaking to full bouts of cups and litres, back in the day I was told not to worry about it, and of course became complacent...
When moving to my current location I was informed that you can in fact bleed to death... (huge shock to the system considering I had been bleeding now for 20 odd years)
I had my first embolization when I was 21 which resulted in a anaphalaxis (sp?) due to an unknown allergy to the contract, because of this they could only block off 7 of the bleeders...I continued to bleed straight after my embolization..
again the bleeding became progressively worse, but there wasnt a lot that could be done
3 years prior to my tx I was back to coughing a cup a day, and due to my reaction another embolization was only going to be used as a very last resort.... and if they were to do one they had cardioligist and every other medical team on stand by to treat the whole anaphalaxis..
I was put on a drug called Transanemic acid (sp?) which clots the blood it had to be monitored strictly but it help....
I will see if I can find an old bottle for the correct spelling LOL
my65roses4me
New member
I have been embolized 26 times, my left upper lobe removed because of hemoptysis. The most i have ever bled was 800cc four times in one day. I had three blood tranfusions also. Once about 5 years ago I was in the hospital with hemoptysis for seven weeks and had a non stop bleed the whole time. They gave me a yonker to suck it out of my mouth because I was too exhausted to get it out on my own. Thats when they decided to take out the lobe that was bleeding.
I am proned to massive hemoptysis. That has been my biggest problem related to cf. Not all people with cf get massive bleeds. I was told its rare and there are very few that have the lung removed because of it.
Sometimes it is related to infection and other times its a mystery. When it happens they put me in for a regular tune up without breathing treatments. The treatment make mine worse.
The anxiety can hender your life because of hemoptysis if you allow it to. Its a very scary thing to deal with.
It also helps to have a cf team you can trust, because you need to trust when its time to go in or just stay home. I trust my team fully when it comes to hemoptysis and listen to what they say because they haven't failed me yet when it comes to this part of my cf.
I hope this answers some of your questions and thank for letting me share. I dont get to share about my hemoptysis too often because most dont understand it.
I love this website!!!!
I am proned to massive hemoptysis. That has been my biggest problem related to cf. Not all people with cf get massive bleeds. I was told its rare and there are very few that have the lung removed because of it.
Sometimes it is related to infection and other times its a mystery. When it happens they put me in for a regular tune up without breathing treatments. The treatment make mine worse.
The anxiety can hender your life because of hemoptysis if you allow it to. Its a very scary thing to deal with.
It also helps to have a cf team you can trust, because you need to trust when its time to go in or just stay home. I trust my team fully when it comes to hemoptysis and listen to what they say because they haven't failed me yet when it comes to this part of my cf.
I hope this answers some of your questions and thank for letting me share. I dont get to share about my hemoptysis too often because most dont understand it.
I love this website!!!!
my65roses4me
New member
I have been embolized 26 times, my left upper lobe removed because of hemoptysis. The most i have ever bled was 800cc four times in one day. I had three blood tranfusions also. Once about 5 years ago I was in the hospital with hemoptysis for seven weeks and had a non stop bleed the whole time. They gave me a yonker to suck it out of my mouth because I was too exhausted to get it out on my own. Thats when they decided to take out the lobe that was bleeding.
I am proned to massive hemoptysis. That has been my biggest problem related to cf. Not all people with cf get massive bleeds. I was told its rare and there are very few that have the lung removed because of it.
Sometimes it is related to infection and other times its a mystery. When it happens they put me in for a regular tune up without breathing treatments. The treatment make mine worse.
The anxiety can hender your life because of hemoptysis if you allow it to. Its a very scary thing to deal with.
It also helps to have a cf team you can trust, because you need to trust when its time to go in or just stay home. I trust my team fully when it comes to hemoptysis and listen to what they say because they haven't failed me yet when it comes to this part of my cf.
I hope this answers some of your questions and thank for letting me share. I dont get to share about my hemoptysis too often because most dont understand it.
I love this website!!!!
I am proned to massive hemoptysis. That has been my biggest problem related to cf. Not all people with cf get massive bleeds. I was told its rare and there are very few that have the lung removed because of it.
Sometimes it is related to infection and other times its a mystery. When it happens they put me in for a regular tune up without breathing treatments. The treatment make mine worse.
The anxiety can hender your life because of hemoptysis if you allow it to. Its a very scary thing to deal with.
It also helps to have a cf team you can trust, because you need to trust when its time to go in or just stay home. I trust my team fully when it comes to hemoptysis and listen to what they say because they haven't failed me yet when it comes to this part of my cf.
I hope this answers some of your questions and thank for letting me share. I dont get to share about my hemoptysis too often because most dont understand it.
I love this website!!!!
my65roses4me
New member
I have been embolized 26 times, my left upper lobe removed because of hemoptysis. The most i have ever bled was 800cc four times in one day. I had three blood tranfusions also. Once about 5 years ago I was in the hospital with hemoptysis for seven weeks and had a non stop bleed the whole time. They gave me a yonker to suck it out of my mouth because I was too exhausted to get it out on my own. Thats when they decided to take out the lobe that was bleeding.
I am proned to massive hemoptysis. That has been my biggest problem related to cf. Not all people with cf get massive bleeds. I was told its rare and there are very few that have the lung removed because of it.
Sometimes it is related to infection and other times its a mystery. When it happens they put me in for a regular tune up without breathing treatments. The treatment make mine worse.
The anxiety can hender your life because of hemoptysis if you allow it to. Its a very scary thing to deal with.
It also helps to have a cf team you can trust, because you need to trust when its time to go in or just stay home. I trust my team fully when it comes to hemoptysis and listen to what they say because they haven't failed me yet when it comes to this part of my cf.
I hope this answers some of your questions and thank for letting me share. I dont get to share about my hemoptysis too often because most dont understand it.
I love this website!!!!
I am proned to massive hemoptysis. That has been my biggest problem related to cf. Not all people with cf get massive bleeds. I was told its rare and there are very few that have the lung removed because of it.
Sometimes it is related to infection and other times its a mystery. When it happens they put me in for a regular tune up without breathing treatments. The treatment make mine worse.
The anxiety can hender your life because of hemoptysis if you allow it to. Its a very scary thing to deal with.
It also helps to have a cf team you can trust, because you need to trust when its time to go in or just stay home. I trust my team fully when it comes to hemoptysis and listen to what they say because they haven't failed me yet when it comes to this part of my cf.
I hope this answers some of your questions and thank for letting me share. I dont get to share about my hemoptysis too often because most dont understand it.
I love this website!!!!
A little background: I am 23 years old with CF. I am very very active and try to do all I can to stay healthy. I run most days of the week and was blessed to run for the University of OKlahoma. However, about 2 years ago I was doing my acapella CPT aggressively and coughed up blood. After that it happened probably every six months and more recently every couple of weeks. About a month ago it got to the point of being every couple of days. Each time it was only a teaspoon or two- but very frightening an debilitating. The thought of exercising or exerting myself was scary. So my doc decided to do a bronchoscopy and see what was going on. He said that my lungs looked very clear- but very irritated. I guess I didn't even have enough mucus to coat and protect my airways. He compared it to an obsessive hand-washer whose hands are clean but are also dry and chapped and bleeding. SO he suggested that when it happens I take one tablet of prednisone and lay off the CPT for a day. However it has happened the last three days in a row.
Whenever it happens I control my breathing, don't cough, and drink cold water.
I have heard caffeine mentioned as a trigger. Does anyone else have any thoughts as to what might trigger it? Cold air? Dry air? ANy links to menstrul cycle? Stress?
Whenever it happens I control my breathing, don't cough, and drink cold water.
I have heard caffeine mentioned as a trigger. Does anyone else have any thoughts as to what might trigger it? Cold air? Dry air? ANy links to menstrul cycle? Stress?
A little background: I am 23 years old with CF. I am very very active and try to do all I can to stay healthy. I run most days of the week and was blessed to run for the University of OKlahoma. However, about 2 years ago I was doing my acapella CPT aggressively and coughed up blood. After that it happened probably every six months and more recently every couple of weeks. About a month ago it got to the point of being every couple of days. Each time it was only a teaspoon or two- but very frightening an debilitating. The thought of exercising or exerting myself was scary. So my doc decided to do a bronchoscopy and see what was going on. He said that my lungs looked very clear- but very irritated. I guess I didn't even have enough mucus to coat and protect my airways. He compared it to an obsessive hand-washer whose hands are clean but are also dry and chapped and bleeding. SO he suggested that when it happens I take one tablet of prednisone and lay off the CPT for a day. However it has happened the last three days in a row.
Whenever it happens I control my breathing, don't cough, and drink cold water.
I have heard caffeine mentioned as a trigger. Does anyone else have any thoughts as to what might trigger it? Cold air? Dry air? ANy links to menstrul cycle? Stress?
Whenever it happens I control my breathing, don't cough, and drink cold water.
I have heard caffeine mentioned as a trigger. Does anyone else have any thoughts as to what might trigger it? Cold air? Dry air? ANy links to menstrul cycle? Stress?
A little background: I am 23 years old with CF. I am very very active and try to do all I can to stay healthy. I run most days of the week and was blessed to run for the University of OKlahoma. However, about 2 years ago I was doing my acapella CPT aggressively and coughed up blood. After that it happened probably every six months and more recently every couple of weeks. About a month ago it got to the point of being every couple of days. Each time it was only a teaspoon or two- but very frightening an debilitating. The thought of exercising or exerting myself was scary. So my doc decided to do a bronchoscopy and see what was going on. He said that my lungs looked very clear- but very irritated. I guess I didn't even have enough mucus to coat and protect my airways. He compared it to an obsessive hand-washer whose hands are clean but are also dry and chapped and bleeding. SO he suggested that when it happens I take one tablet of prednisone and lay off the CPT for a day. However it has happened the last three days in a row.
Whenever it happens I control my breathing, don't cough, and drink cold water.
I have heard caffeine mentioned as a trigger. Does anyone else have any thoughts as to what might trigger it? Cold air? Dry air? ANy links to menstrul cycle? Stress?
Whenever it happens I control my breathing, don't cough, and drink cold water.
I have heard caffeine mentioned as a trigger. Does anyone else have any thoughts as to what might trigger it? Cold air? Dry air? ANy links to menstrul cycle? Stress?
Yes there is a correlation to menstral cycle. I could never explain why, but there is a correlation. Some things you may want to avoid if you have hemoptysis problems are...... Ibuprofen, green tea, large amounts of vit.E, aspirin, large amounts of garlic.... These things thin the blood , which if you are a bleeder you dont want. For me, laying down flat is something i dont do anymore. It seemed to be a major trigger for my hemoptysis, but then again i have many unexplainable episodes just like everyone else. I am not sure about heat or cold affecting my hemoptysis but i will say that being out in the cold does make me shiver which makes me cough more which in turn can cause a bleed.
Yes there is a correlation to menstral cycle. I could never explain why, but there is a correlation. Some things you may want to avoid if you have hemoptysis problems are...... Ibuprofen, green tea, large amounts of vit.E, aspirin, large amounts of garlic.... These things thin the blood , which if you are a bleeder you dont want. For me, laying down flat is something i dont do anymore. It seemed to be a major trigger for my hemoptysis, but then again i have many unexplainable episodes just like everyone else. I am not sure about heat or cold affecting my hemoptysis but i will say that being out in the cold does make me shiver which makes me cough more which in turn can cause a bleed.
Yes there is a correlation to menstral cycle. I could never explain why, but there is a correlation. Some things you may want to avoid if you have hemoptysis problems are...... Ibuprofen, green tea, large amounts of vit.E, aspirin, large amounts of garlic.... These things thin the blood , which if you are a bleeder you dont want. For me, laying down flat is something i dont do anymore. It seemed to be a major trigger for my hemoptysis, but then again i have many unexplainable episodes just like everyone else. I am not sure about heat or cold affecting my hemoptysis but i will say that being out in the cold does make me shiver which makes me cough more which in turn can cause a bleed.