Hemoptysis

[my65roses4me]

I am doing my own research on this topic, just out of my own curiosity.
I have heard from other females that their hemoptysis is directly related to the menstral cycle, so is mine. I have had hemoptysis since I was about 21yrs old and have had since then. I have had my upper left lobe removed to control the hemoraging. Since then it has been more on the mild side but can still be worrysome.
I am just curious and was wondering if you all can help me out on this.

I am wondering if hemoptysis affects males just the same as females. I am referring to the severity of it. I know that both male and female cfers both suffer from hemoptysis. And I have chatted with a few females w/cf on this sight that have had lobectomies too because of the hemoptysis, but never have heard much from the males.

If you can share you experiences with hemoptysis whether you are male or female w/cf I would apreciate it.
Maybe say how long you have had it, and how severe or mild it is. What kind of prevention methods you are taking to help avoid it. Tell me if you have had any major surgeries related to your hemoptysis. Thanks for your input and let me know if you have any questions.

 

[my65roses4me]

I am doing my own research on this topic, just out of my own curiosity.
I have heard from other females that their hemoptysis is directly related to the menstral cycle, so is mine. I have had hemoptysis since I was about 21yrs old and have had since then. I have had my upper left lobe removed to control the hemoraging. Since then it has been more on the mild side but can still be worrysome.
I am just curious and was wondering if you all can help me out on this.

I am wondering if hemoptysis affects males just the same as females. I am referring to the severity of it. I know that both male and female cfers both suffer from hemoptysis. And I have chatted with a few females w/cf on this sight that have had lobectomies too because of the hemoptysis, but never have heard much from the males.

If you can share you experiences with hemoptysis whether you are male or female w/cf I would apreciate it.
Maybe say how long you have had it, and how severe or mild it is. What kind of prevention methods you are taking to help avoid it. Tell me if you have had any major surgeries related to your hemoptysis. Thanks for your input and let me know if you have any questions.

 

[my65roses4me]

I am doing my own research on this topic, just out of my own curiosity.
I have heard from other females that their hemoptysis is directly related to the menstral cycle, so is mine. I have had hemoptysis since I was about 21yrs old and have had since then. I have had my upper left lobe removed to control the hemoraging. Since then it has been more on the mild side but can still be worrysome.
I am just curious and was wondering if you all can help me out on this.

I am wondering if hemoptysis affects males just the same as females. I am referring to the severity of it. I know that both male and female cfers both suffer from hemoptysis. And I have chatted with a few females w/cf on this sight that have had lobectomies too because of the hemoptysis, but never have heard much from the males.

If you can share you experiences with hemoptysis whether you are male or female w/cf I would apreciate it.
Maybe say how long you have had it, and how severe or mild it is. What kind of prevention methods you are taking to help avoid it. Tell me if you have had any major surgeries related to your hemoptysis. Thanks for your input and let me know if you have any questions.

 

[LouLou]

I am 28 years old and have had hemoptysis on and off since I was 12 years old. There are times when I have felt it was menstrual cycle related and other times when it did not seem to correlate with my cycle.

I have always felt - mentally, pictorially and physically - that the blood breeds infection so work vigorously almost immediately after having a bleed to get my sputum to come clear of blood again. I have not ever had a problem with an area breaking back open and bleeding right away after just having a bleed.

For many points since age 18 - I have suffered from hemoptysis on a daily basis.
That being said, I'm blessed to have never had a major bleed.
My bleeds always clot almost immediately with the most pure blood I've ever coughed up in one episode to be 3 teaspoons.

All of my bleeding happens in a prone position up until 1 year ago when I started to have standing bleeds. They were still very small bleeds and I have only had 3 of those ever. It was around the time of my first culture of aspergillus.

I avoid lying on my back because this triggers the bleeding 75% of the time if I have a resting heartrate and 100% of the time if I have an elevated heartrate. This has progressively gotten worse. For example, up until a few years ago I could still lie on my back when sleeping, now I must prop myself up. Also, I can no longer lay on my back during a massage (or while doing the happy dance). I have begun this year to avoid sit ups because this action seems to trigger a bleed.

I am taking 2000 mg / day of L-Lysine in suspicion that it helps control my hemoptysis. My doctor does not agree that this helps.

Pregnancy has eleviated 85% of my hemoptysis. I would put money on it that it is hormone or cycle related.

Note: I was on birth control pills from age 15-27.
I am particularly interested to watch as more women with cf conceive if they will eventually rule that the epidural is contradictory for hemoptysis sufferers due to the required prone positioning.

 

[LouLou]

I am 28 years old and have had hemoptysis on and off since I was 12 years old. There are times when I have felt it was menstrual cycle related and other times when it did not seem to correlate with my cycle.

I have always felt - mentally, pictorially and physically - that the blood breeds infection so work vigorously almost immediately after having a bleed to get my sputum to come clear of blood again. I have not ever had a problem with an area breaking back open and bleeding right away after just having a bleed.

For many points since age 18 - I have suffered from hemoptysis on a daily basis.
That being said, I'm blessed to have never had a major bleed.
My bleeds always clot almost immediately with the most pure blood I've ever coughed up in one episode to be 3 teaspoons.

All of my bleeding happens in a prone position up until 1 year ago when I started to have standing bleeds. They were still very small bleeds and I have only had 3 of those ever. It was around the time of my first culture of aspergillus.

I avoid lying on my back because this triggers the bleeding 75% of the time if I have a resting heartrate and 100% of the time if I have an elevated heartrate. This has progressively gotten worse. For example, up until a few years ago I could still lie on my back when sleeping, now I must prop myself up. Also, I can no longer lay on my back during a massage (or while doing the happy dance). I have begun this year to avoid sit ups because this action seems to trigger a bleed.

I am taking 2000 mg / day of L-Lysine in suspicion that it helps control my hemoptysis. My doctor does not agree that this helps.

Pregnancy has eleviated 85% of my hemoptysis. I would put money on it that it is hormone or cycle related.

Note: I was on birth control pills from age 15-27.
I am particularly interested to watch as more women with cf conceive if they will eventually rule that the epidural is contradictory for hemoptysis sufferers due to the required prone positioning.

 

[LouLou]

I am 28 years old and have had hemoptysis on and off since I was 12 years old. There are times when I have felt it was menstrual cycle related and other times when it did not seem to correlate with my cycle.

I have always felt - mentally, pictorially and physically - that the blood breeds infection so work vigorously almost immediately after having a bleed to get my sputum to come clear of blood again. I have not ever had a problem with an area breaking back open and bleeding right away after just having a bleed.

For many points since age 18 - I have suffered from hemoptysis on a daily basis.
That being said, I'm blessed to have never had a major bleed.
My bleeds always clot almost immediately with the most pure blood I've ever coughed up in one episode to be 3 teaspoons.

All of my bleeding happens in a prone position up until 1 year ago when I started to have standing bleeds. They were still very small bleeds and I have only had 3 of those ever. It was around the time of my first culture of aspergillus.

I avoid lying on my back because this triggers the bleeding 75% of the time if I have a resting heartrate and 100% of the time if I have an elevated heartrate. This has progressively gotten worse. For example, up until a few years ago I could still lie on my back when sleeping, now I must prop myself up. Also, I can no longer lay on my back during a massage (or while doing the happy dance). I have begun this year to avoid sit ups because this action seems to trigger a bleed.

I am taking 2000 mg / day of L-Lysine in suspicion that it helps control my hemoptysis. My doctor does not agree that this helps.

Pregnancy has eleviated 85% of my hemoptysis. I would put money on it that it is hormone or cycle related.

Note: I was on birth control pills from age 15-27.
I am particularly interested to watch as more women with cf conceive if they will eventually rule that the epidural is contradictory for hemoptysis sufferers due to the required prone positioning.

 

[JazzysMom]

I have dealt with hemoptysis since a child. I am not exactly sure how young, but it was pre puberty. The episodes became more frequent after puberty or at least the risk of them. I cant say that each & every month I have an episode. It tends to go in cycles. Anything from infection or being wore down to just plain old stress or physical exertion. IF I am in that "vulnerable" state for whatever reason that no matter what I do can trigger it. Too much milk, caffein, laying down, sitting without support against my back.....soooo many things. I have not had anything more then Vitamin K injections for my bleeds (knock on wood so far)!

 

[JazzysMom]

I have dealt with hemoptysis since a child. I am not exactly sure how young, but it was pre puberty. The episodes became more frequent after puberty or at least the risk of them. I cant say that each & every month I have an episode. It tends to go in cycles. Anything from infection or being wore down to just plain old stress or physical exertion. IF I am in that "vulnerable" state for whatever reason that no matter what I do can trigger it. Too much milk, caffein, laying down, sitting without support against my back.....soooo many things. I have not had anything more then Vitamin K injections for my bleeds (knock on wood so far)!

 

[JazzysMom]

I have dealt with hemoptysis since a child. I am not exactly sure how young, but it was pre puberty. The episodes became more frequent after puberty or at least the risk of them. I cant say that each & every month I have an episode. It tends to go in cycles. Anything from infection or being wore down to just plain old stress or physical exertion. IF I am in that "vulnerable" state for whatever reason that no matter what I do can trigger it. Too much milk, caffein, laying down, sitting without support against my back.....soooo many things. I have not had anything more then Vitamin K injections for my bleeds (knock on wood so far)!

 

[my65roses4me]

bump

 

[my65roses4me]

bump

 

[my65roses4me]

bump

 

[Jem]

I first had hemoptysis at the age of 18. By 19 I had my upper left lobe removed because of chronic hemoptysis. I then had periodic bouts very minor for the next 19 years. Then the bleeding episodes became severe again. I had 5 pulmonary embolizations over a two year period then it was decided to take the rest of my left lung out because the hemoptysis just kept on getting worse. That was 7 1/2 years ago. My life improved dramatically after my surgery and I function very well on one lung. I hope to keep this right lung for many years to come.

I do have minor bleeding from time to time. It happens about 3 to 4 times a year with about 1 teaspoon or less of bleeding. I have been charting when it happens and I do notice that it usually happens just a few days before my period begins. Last time was 2 1/2 months ago.

I do not lay on my right side or completely flat on my back as I do believe that can aggravate the situation. As far as treatment when I have a bleeding episode...If I have one episode and feel fine I do nothing beyond informing my doctor. If I bleed again within a week or two then I go on an oral antibiotic for 2 weeks. Recently (two months ago) I was given a script for Vitamin K to have on hand that I am to take for 5 days if bleeding is more than streaks. I have not had to do that as of yet.

If you have any other questions feel free to ask.

 

[Jem]

I first had hemoptysis at the age of 18. By 19 I had my upper left lobe removed because of chronic hemoptysis. I then had periodic bouts very minor for the next 19 years. Then the bleeding episodes became severe again. I had 5 pulmonary embolizations over a two year period then it was decided to take the rest of my left lung out because the hemoptysis just kept on getting worse. That was 7 1/2 years ago. My life improved dramatically after my surgery and I function very well on one lung. I hope to keep this right lung for many years to come.

I do have minor bleeding from time to time. It happens about 3 to 4 times a year with about 1 teaspoon or less of bleeding. I have been charting when it happens and I do notice that it usually happens just a few days before my period begins. Last time was 2 1/2 months ago.

I do not lay on my right side or completely flat on my back as I do believe that can aggravate the situation. As far as treatment when I have a bleeding episode...If I have one episode and feel fine I do nothing beyond informing my doctor. If I bleed again within a week or two then I go on an oral antibiotic for 2 weeks. Recently (two months ago) I was given a script for Vitamin K to have on hand that I am to take for 5 days if bleeding is more than streaks. I have not had to do that as of yet.

If you have any other questions feel free to ask.

 

[Jem]

I first had hemoptysis at the age of 18. By 19 I had my upper left lobe removed because of chronic hemoptysis. I then had periodic bouts very minor for the next 19 years. Then the bleeding episodes became severe again. I had 5 pulmonary embolizations over a two year period then it was decided to take the rest of my left lung out because the hemoptysis just kept on getting worse. That was 7 1/2 years ago. My life improved dramatically after my surgery and I function very well on one lung. I hope to keep this right lung for many years to come.

I do have minor bleeding from time to time. It happens about 3 to 4 times a year with about 1 teaspoon or less of bleeding. I have been charting when it happens and I do notice that it usually happens just a few days before my period begins. Last time was 2 1/2 months ago.

I do not lay on my right side or completely flat on my back as I do believe that can aggravate the situation. As far as treatment when I have a bleeding episode...If I have one episode and feel fine I do nothing beyond informing my doctor. If I bleed again within a week or two then I go on an oral antibiotic for 2 weeks. Recently (two months ago) I was given a script for Vitamin K to have on hand that I am to take for 5 days if bleeding is more than streaks. I have not had to do that as of yet.

If you have any other questions feel free to ask.

 

[Diane]

The first time i ever coughed up blood i was 21. It took me completely by surprise since i had almost no lung problems at all yet. I barely ever coughed at that point so it really took me totally by surprise. It started happening every here and there for years till 2002 when i had a massive bleed, and my first embolization. Then a month and a half later i had my second big bleed and my second embolization. After thinking about it and trying to remember the times it happened most, it seemed to correlate to my menstrual cycle and also laying down flat. So i never layed flat again since then. I sleep with a wedge pillow and a few other pillows. I had my third embolization this past Oct. but on an elective basis. I was in the hospital for hemoptysis and the intervention radiologist said he would like to "look around" in my lungs to see if there was anything he could fix and I am GLAD i decided to do it. He wound up placing 21 coils as well as particles in both lungs combined. After reading the report, i had 2 areas that were just waiting for their chance to bust open. I am taking 3000 mg of L-Lysine daily to help with hemoptysis and also 10 mg. vit.K . This last time i was in the hospital the Dr. told me i had a fungus ball (aspergillus) and she suspects thats where some of my bleeds are coming from. I do tend to bleed with repeated hard coughing also.

 

[Diane]

The first time i ever coughed up blood i was 21. It took me completely by surprise since i had almost no lung problems at all yet. I barely ever coughed at that point so it really took me totally by surprise. It started happening every here and there for years till 2002 when i had a massive bleed, and my first embolization. Then a month and a half later i had my second big bleed and my second embolization. After thinking about it and trying to remember the times it happened most, it seemed to correlate to my menstrual cycle and also laying down flat. So i never layed flat again since then. I sleep with a wedge pillow and a few other pillows. I had my third embolization this past Oct. but on an elective basis. I was in the hospital for hemoptysis and the intervention radiologist said he would like to "look around" in my lungs to see if there was anything he could fix and I am GLAD i decided to do it. He wound up placing 21 coils as well as particles in both lungs combined. After reading the report, i had 2 areas that were just waiting for their chance to bust open. I am taking 3000 mg of L-Lysine daily to help with hemoptysis and also 10 mg. vit.K . This last time i was in the hospital the Dr. told me i had a fungus ball (aspergillus) and she suspects thats where some of my bleeds are coming from. I do tend to bleed with repeated hard coughing also.

 

[Diane]

The first time i ever coughed up blood i was 21. It took me completely by surprise since i had almost no lung problems at all yet. I barely ever coughed at that point so it really took me totally by surprise. It started happening every here and there for years till 2002 when i had a massive bleed, and my first embolization. Then a month and a half later i had my second big bleed and my second embolization. After thinking about it and trying to remember the times it happened most, it seemed to correlate to my menstrual cycle and also laying down flat. So i never layed flat again since then. I sleep with a wedge pillow and a few other pillows. I had my third embolization this past Oct. but on an elective basis. I was in the hospital for hemoptysis and the intervention radiologist said he would like to "look around" in my lungs to see if there was anything he could fix and I am GLAD i decided to do it. He wound up placing 21 coils as well as particles in both lungs combined. After reading the report, i had 2 areas that were just waiting for their chance to bust open. I am taking 3000 mg of L-Lysine daily to help with hemoptysis and also 10 mg. vit.K . This last time i was in the hospital the Dr. told me i had a fungus ball (aspergillus) and she suspects thats where some of my bleeds are coming from. I do tend to bleed with repeated hard coughing also.

 

[Chaggie]

up until 3 years or so ago, I could count on 1 hand the times I have had streaking, no all out bleeds. about 3 years ago my streaking started to increase from rarely to 1 a year to around once every other month or so, still no all out bleeders though. However when I started doing pulmozyme again last summer that number drastically went up to nearly every day when I stopped pulmo. it returned to 1 every other month.

 

[Chaggie]

up until 3 years or so ago, I could count on 1 hand the times I have had streaking, no all out bleeds. about 3 years ago my streaking started to increase from rarely to 1 a year to around once every other month or so, still no all out bleeders though. However when I started doing pulmozyme again last summer that number drastically went up to nearly every day when I stopped pulmo. it returned to 1 every other month.