Still frustrated. Need some input to possible solution

Diane · Dec 14, 2007

I guess i should throw this out there since i have had many bleeds and 3 embolizations. I have done a lot of research on the reasons for hemoptysis and it truely seems that there is no rhyme or reason to them sometimes . Which for those who have the problem, it is highly frustrating. You always are left feeling you are taking a shot in the dark when you try to treat it, whether it be iv's supplements or change of lifestyle. This explanation made the most sense to me......... Our blood vessels tend to get very twisted and fragile from all the years of coughing and infection. The areas that bend the most are the most vulnerable to breakage. I am gonna guess that when you "speed things up" you may be putting too much pressure on these weak spots and it lets loose. At one point i couldnt even lean over to pick something up or get grocery bags out of the car without having hemoptysis. After my last embloization, they discovered the aspergilloma ( fungus ball) and after on-going treatment i am more than thrilled to say the hemoptysis is dramatically less. I would ask for a sputum culture and a fungal culture just to be on the safe side. Like Sarah said you might want to consider being tested for that, just to rule it out. But unfortunately Sean, sometimes when it comes to hemoptysis nothing makes sense. I have not layed down flat to sleep in 6 years. When i had my cat scan a few days ago they had me lay flat and sure enough when i gave my sputum sample about an hour later there were streaks in it. Who knows why or what the co-relation is, I hadnt had any hemoptysis in weeks, and none after so i know laying flat is out of the question for me. Its unfortunate but you may have to make some adjustments to avoid what you know for sure triggers it. You could always have an embolization but there is no absolute guarantee with that either. Look at Roshelle ( Hairgirl) she had 15 embolizations and still had bleeding. I hope you can get to the bottom of it, and get rid of it, but if not, just do your best to avoid what you know will trigger it.

Diane · Dec 14, 2007

I guess i should throw this out there since i have had many bleeds and 3 embolizations. I have done a lot of research on the reasons for hemoptysis and it truely seems that there is no rhyme or reason to them sometimes . Which for those who have the problem, it is highly frustrating. You always are left feeling you are taking a shot in the dark when you try to treat it, whether it be iv's supplements or change of lifestyle. This explanation made the most sense to me......... Our blood vessels tend to get very twisted and fragile from all the years of coughing and infection. The areas that bend the most are the most vulnerable to breakage. I am gonna guess that when you "speed things up" you may be putting too much pressure on these weak spots and it lets loose. At one point i couldnt even lean over to pick something up or get grocery bags out of the car without having hemoptysis. After my last embloization, they discovered the aspergilloma ( fungus ball) and after on-going treatment i am more than thrilled to say the hemoptysis is dramatically less. I would ask for a sputum culture and a fungal culture just to be on the safe side. Like Sarah said you might want to consider being tested for that, just to rule it out. But unfortunately Sean, sometimes when it comes to hemoptysis nothing makes sense. I have not layed down flat to sleep in 6 years. When i had my cat scan a few days ago they had me lay flat and sure enough when i gave my sputum sample about an hour later there were streaks in it. Who knows why or what the co-relation is, I hadnt had any hemoptysis in weeks, and none after so i know laying flat is out of the question for me. Its unfortunate but you may have to make some adjustments to avoid what you know for sure triggers it. You could always have an embolization but there is no absolute guarantee with that either. Look at Roshelle ( Hairgirl) she had 15 embolizations and still had bleeding. I hope you can get to the bottom of it, and get rid of it, but if not, just do your best to avoid what you know will trigger it.

Diane · Dec 14, 2007

I guess i should throw this out there since i have had many bleeds and 3 embolizations. I have done a lot of research on the reasons for hemoptysis and it truely seems that there is no rhyme or reason to them sometimes . Which for those who have the problem, it is highly frustrating. You always are left feeling you are taking a shot in the dark when you try to treat it, whether it be iv's supplements or change of lifestyle. This explanation made the most sense to me......... Our blood vessels tend to get very twisted and fragile from all the years of coughing and infection. The areas that bend the most are the most vulnerable to breakage. I am gonna guess that when you "speed things up" you may be putting too much pressure on these weak spots and it lets loose. At one point i couldnt even lean over to pick something up or get grocery bags out of the car without having hemoptysis. After my last embloization, they discovered the aspergilloma ( fungus ball) and after on-going treatment i am more than thrilled to say the hemoptysis is dramatically less. I would ask for a sputum culture and a fungal culture just to be on the safe side. Like Sarah said you might want to consider being tested for that, just to rule it out. But unfortunately Sean, sometimes when it comes to hemoptysis nothing makes sense. I have not layed down flat to sleep in 6 years. When i had my cat scan a few days ago they had me lay flat and sure enough when i gave my sputum sample about an hour later there were streaks in it. Who knows why or what the co-relation is, I hadnt had any hemoptysis in weeks, and none after so i know laying flat is out of the question for me. Its unfortunate but you may have to make some adjustments to avoid what you know for sure triggers it. You could always have an embolization but there is no absolute guarantee with that either. Look at Roshelle ( Hairgirl) she had 15 embolizations and still had bleeding. I hope you can get to the bottom of it, and get rid of it, but if not, just do your best to avoid what you know will trigger it.

Diane · Dec 14, 2007

I guess i should throw this out there since i have had many bleeds and 3 embolizations. I have done a lot of research on the reasons for hemoptysis and it truely seems that there is no rhyme or reason to them sometimes . Which for those who have the problem, it is highly frustrating. You always are left feeling you are taking a shot in the dark when you try to treat it, whether it be iv's supplements or change of lifestyle. This explanation made the most sense to me......... Our blood vessels tend to get very twisted and fragile from all the years of coughing and infection. The areas that bend the most are the most vulnerable to breakage. I am gonna guess that when you "speed things up" you may be putting too much pressure on these weak spots and it lets loose. At one point i couldnt even lean over to pick something up or get grocery bags out of the car without having hemoptysis. After my last embloization, they discovered the aspergilloma ( fungus ball) and after on-going treatment i am more than thrilled to say the hemoptysis is dramatically less. I would ask for a sputum culture and a fungal culture just to be on the safe side. Like Sarah said you might want to consider being tested for that, just to rule it out. But unfortunately Sean, sometimes when it comes to hemoptysis nothing makes sense. I have not layed down flat to sleep in 6 years. When i had my cat scan a few days ago they had me lay flat and sure enough when i gave my sputum sample about an hour later there were streaks in it. Who knows why or what the co-relation is, I hadnt had any hemoptysis in weeks, and none after so i know laying flat is out of the question for me. Its unfortunate but you may have to make some adjustments to avoid what you know for sure triggers it. You could always have an embolization but there is no absolute guarantee with that either. Look at Roshelle ( Hairgirl) she had 15 embolizations and still had bleeding. I hope you can get to the bottom of it, and get rid of it, but if not, just do your best to avoid what you know will trigger it.

Diane · Dec 14, 2007

I guess i should throw this out there since i have had many bleeds and 3 embolizations. I have done a lot of research on the reasons for hemoptysis and it truely seems that there is no rhyme or reason to them sometimes . Which for those who have the problem, it is highly frustrating. You always are left feeling you are taking a shot in the dark when you try to treat it, whether it be iv's supplements or change of lifestyle. This explanation made the most sense to me......... Our blood vessels tend to get very twisted and fragile from all the years of coughing and infection. The areas that bend the most are the most vulnerable to breakage. I am gonna guess that when you "speed things up" you may be putting too much pressure on these weak spots and it lets loose. At one point i couldnt even lean over to pick something up or get grocery bags out of the car without having hemoptysis. After my last embloization, they discovered the aspergilloma ( fungus ball) and after on-going treatment i am more than thrilled to say the hemoptysis is dramatically less. I would ask for a sputum culture and a fungal culture just to be on the safe side. Like Sarah said you might want to consider being tested for that, just to rule it out. But unfortunately Sean, sometimes when it comes to hemoptysis nothing makes sense. I have not layed down flat to sleep in 6 years. When i had my cat scan a few days ago they had me lay flat and sure enough when i gave my sputum sample about an hour later there were streaks in it. Who knows why or what the co-relation is, I hadnt had any hemoptysis in weeks, and none after so i know laying flat is out of the question for me. Its unfortunate but you may have to make some adjustments to avoid what you know for sure triggers it. You could always have an embolization but there is no absolute guarantee with that either. Look at Roshelle ( Hairgirl) she had 15 embolizations and still had bleeding. I hope you can get to the bottom of it, and get rid of it, but if not, just do your best to avoid what you know will trigger it.

Faust · Dec 14, 2007

Thanks guys. The acidic thing is not anymore insane than other things I have tried. Maybe I should try goin back on the oregano oil for that purpose. I stopped due to knowing it was a blood thinner, when I was troubleshooting my bleeds. The biggest factor for mine is the explosive exertion thing. My blood pressure is much lower now than it used to be when I ate meat. It's weird. I could raise my pulse by starting out slow on cardio and then working my way up, and no bleeds. But if i'm standing still or walking and then I sprint or bike fast, boom...Bleed. It could very well be that I have some degraded capilaries or something and that quick boost of stress triggers it as well. I will look into the PH thing, and check back with the docs about the fungus. I can't recall them saying I had any fungus in my last culture. Do I need to specifically get cultured on that one thing? Or do they check when you get a regular culture?

Faust · Dec 14, 2007

Thanks guys. The acidic thing is not anymore insane than other things I have tried. Maybe I should try goin back on the oregano oil for that purpose. I stopped due to knowing it was a blood thinner, when I was troubleshooting my bleeds. The biggest factor for mine is the explosive exertion thing. My blood pressure is much lower now than it used to be when I ate meat. It's weird. I could raise my pulse by starting out slow on cardio and then working my way up, and no bleeds. But if i'm standing still or walking and then I sprint or bike fast, boom...Bleed. It could very well be that I have some degraded capilaries or something and that quick boost of stress triggers it as well. I will look into the PH thing, and check back with the docs about the fungus. I can't recall them saying I had any fungus in my last culture. Do I need to specifically get cultured on that one thing? Or do they check when you get a regular culture?

Faust · Dec 14, 2007

Thanks guys. The acidic thing is not anymore insane than other things I have tried. Maybe I should try goin back on the oregano oil for that purpose. I stopped due to knowing it was a blood thinner, when I was troubleshooting my bleeds. The biggest factor for mine is the explosive exertion thing. My blood pressure is much lower now than it used to be when I ate meat. It's weird. I could raise my pulse by starting out slow on cardio and then working my way up, and no bleeds. But if i'm standing still or walking and then I sprint or bike fast, boom...Bleed. It could very well be that I have some degraded capilaries or something and that quick boost of stress triggers it as well. I will look into the PH thing, and check back with the docs about the fungus. I can't recall them saying I had any fungus in my last culture. Do I need to specifically get cultured on that one thing? Or do they check when you get a regular culture?

Faust · Dec 14, 2007

Thanks guys. The acidic thing is not anymore insane than other things I have tried. Maybe I should try goin back on the oregano oil for that purpose. I stopped due to knowing it was a blood thinner, when I was troubleshooting my bleeds. The biggest factor for mine is the explosive exertion thing. My blood pressure is much lower now than it used to be when I ate meat. It's weird. I could raise my pulse by starting out slow on cardio and then working my way up, and no bleeds. But if i'm standing still or walking and then I sprint or bike fast, boom...Bleed. It could very well be that I have some degraded capilaries or something and that quick boost of stress triggers it as well. I will look into the PH thing, and check back with the docs about the fungus. I can't recall them saying I had any fungus in my last culture. Do I need to specifically get cultured on that one thing? Or do they check when you get a regular culture?

Faust · Dec 14, 2007

Thanks guys. The acidic thing is not anymore insane than other things I have tried. Maybe I should try goin back on the oregano oil for that purpose. I stopped due to knowing it was a blood thinner, when I was troubleshooting my bleeds. The biggest factor for mine is the explosive exertion thing. My blood pressure is much lower now than it used to be when I ate meat. It's weird. I could raise my pulse by starting out slow on cardio and then working my way up, and no bleeds. But if i'm standing still or walking and then I sprint or bike fast, boom...Bleed. It could very well be that I have some degraded capilaries or something and that quick boost of stress triggers it as well. I will look into the PH thing, and check back with the docs about the fungus. I can't recall them saying I had any fungus in my last culture. Do I need to specifically get cultured on that one thing? Or do they check when you get a regular culture?

Diane · Dec 14, 2007

I am not sure if you can just get a regular culture or if you need to ask specifically for a fungus culture. I just recently got a fungus culture done on Wed. to see if i am actually culturing aspergillus or if it is contained in the fungus ball. My regular culture doesnt screen for aspergillus. Maybe the clinic where you go to does. It makes no sense to me why my lab doesnt screen for everything in one shot to cover all bases <img src="i/expressions/face-icon-small-confused.gif" border="0">

Diane · Dec 14, 2007

I am not sure if you can just get a regular culture or if you need to ask specifically for a fungus culture. I just recently got a fungus culture done on Wed. to see if i am actually culturing aspergillus or if it is contained in the fungus ball. My regular culture doesnt screen for aspergillus. Maybe the clinic where you go to does. It makes no sense to me why my lab doesnt screen for everything in one shot to cover all bases <img src="i/expressions/face-icon-small-confused.gif" border="0">

Diane · Dec 14, 2007

I am not sure if you can just get a regular culture or if you need to ask specifically for a fungus culture. I just recently got a fungus culture done on Wed. to see if i am actually culturing aspergillus or if it is contained in the fungus ball. My regular culture doesnt screen for aspergillus. Maybe the clinic where you go to does. It makes no sense to me why my lab doesnt screen for everything in one shot to cover all bases <img src="i/expressions/face-icon-small-confused.gif" border="0">

Diane · Dec 14, 2007

I am not sure if you can just get a regular culture or if you need to ask specifically for a fungus culture. I just recently got a fungus culture done on Wed. to see if i am actually culturing aspergillus or if it is contained in the fungus ball. My regular culture doesnt screen for aspergillus. Maybe the clinic where you go to does. It makes no sense to me why my lab doesnt screen for everything in one shot to cover all bases <img src="i/expressions/face-icon-small-confused.gif" border="0">

Diane · Dec 14, 2007

I am not sure if you can just get a regular culture or if you need to ask specifically for a fungus culture. I just recently got a fungus culture done on Wed. to see if i am actually culturing aspergillus or if it is contained in the fungus ball. My regular culture doesnt screen for aspergillus. Maybe the clinic where you go to does. It makes no sense to me why my lab doesnt screen for everything in one shot to cover all bases <img src="i/expressions/face-icon-small-confused.gif" border="0">

rvm1212 · Dec 14, 2007