Hemoptisis how often ???

hopeforever5583 · May 10, 2009

Dear Friends:

I feel these days as those I am a bomb waiting to go off. I have better than ever pfts, 99-100% sat, no signs of infection in Xrays and no lung collapses and yet like clock work every two weeks I have a bleed. It starts two days before with specks of blood in my sputum and then tow days later a warmth in my chest and boom a full fledge hempotisis. I am working out and reaching levels never thought possible (can run 20min at a time at 4.8 speed) and eveyrthing feels fine. Tomorrow I go in for my first bronch as no one knows what is going on. I am scared,so scared that I brought my twins who are 16 months old a wedding gift. I know that sounds so funny and believe me I hate to even type this but it's true. Yesterday I went to the book store and purchased two copies of "the love dare" in leather bound.

I want somehow so desperately to give them a part of me that will never be forgotten. I am doing all I can to live and fight yet I have these days where the blood comes and reality sets in. Living has never been so amazing as I have felt having these two beautiful miracles in my life and yet I am so scared that I won't be able to see them grow up. I pray so hard that God will give me enough time to have them remember me. I guess my fear is being forgotten and I want so much to let them know that I was always thinking of them even though they are only 16 months and I am shopping for a future dream of marriage that will happen perhaps 30 from now..

Am I insane? Who does stuff like this? Yet I felt so drawn to it I just had to purchase it in the fear I won't see them get married.. I pray these bleeds will go away. God I have never missed a vest treatment and they tell you to take a break from it because of the bleed yet working out and the Vest seem to help me stay alive..

Please help! The tears are flowing and I can't reach out to my hubby because I feel I need to be strong..

Kelly

hopeforever5583 · May 10, 2009

Dear Friends:

I feel these days as those I am a bomb waiting to go off. I have better than ever pfts, 99-100% sat, no signs of infection in Xrays and no lung collapses and yet like clock work every two weeks I have a bleed. It starts two days before with specks of blood in my sputum and then tow days later a warmth in my chest and boom a full fledge hempotisis. I am working out and reaching levels never thought possible (can run 20min at a time at 4.8 speed) and eveyrthing feels fine. Tomorrow I go in for my first bronch as no one knows what is going on. I am scared,so scared that I brought my twins who are 16 months old a wedding gift. I know that sounds so funny and believe me I hate to even type this but it's true. Yesterday I went to the book store and purchased two copies of "the love dare" in leather bound.

I want somehow so desperately to give them a part of me that will never be forgotten. I am doing all I can to live and fight yet I have these days where the blood comes and reality sets in. Living has never been so amazing as I have felt having these two beautiful miracles in my life and yet I am so scared that I won't be able to see them grow up. I pray so hard that God will give me enough time to have them remember me. I guess my fear is being forgotten and I want so much to let them know that I was always thinking of them even though they are only 16 months and I am shopping for a future dream of marriage that will happen perhaps 30 from now..

Am I insane? Who does stuff like this? Yet I felt so drawn to it I just had to purchase it in the fear I won't see them get married.. I pray these bleeds will go away. God I have never missed a vest treatment and they tell you to take a break from it because of the bleed yet working out and the Vest seem to help me stay alive..

Please help! The tears are flowing and I can't reach out to my hubby because I feel I need to be strong..

Kelly

hopeforever5583 · May 10, 2009

Dear Friends:

I feel these days as those I am a bomb waiting to go off. I have better than ever pfts, 99-100% sat, no signs of infection in Xrays and no lung collapses and yet like clock work every two weeks I have a bleed. It starts two days before with specks of blood in my sputum and then tow days later a warmth in my chest and boom a full fledge hempotisis. I am working out and reaching levels never thought possible (can run 20min at a time at 4.8 speed) and eveyrthing feels fine. Tomorrow I go in for my first bronch as no one knows what is going on. I am scared,so scared that I brought my twins who are 16 months old a wedding gift. I know that sounds so funny and believe me I hate to even type this but it's true. Yesterday I went to the book store and purchased two copies of "the love dare" in leather bound.

I want somehow so desperately to give them a part of me that will never be forgotten. I am doing all I can to live and fight yet I have these days where the blood comes and reality sets in. Living has never been so amazing as I have felt having these two beautiful miracles in my life and yet I am so scared that I won't be able to see them grow up. I pray so hard that God will give me enough time to have them remember me. I guess my fear is being forgotten and I want so much to let them know that I was always thinking of them even though they are only 16 months and I am shopping for a future dream of marriage that will happen perhaps 30 from now..

Am I insane? Who does stuff like this? Yet I felt so drawn to it I just had to purchase it in the fear I won't see them get married.. I pray these bleeds will go away. God I have never missed a vest treatment and they tell you to take a break from it because of the bleed yet working out and the Vest seem to help me stay alive..

Please help! The tears are flowing and I can't reach out to my hubby because I feel I need to be strong..

Kelly

hopeforever5583 · May 10, 2009

Dear Friends:

I feel these days as those I am a bomb waiting to go off. I have better than ever pfts, 99-100% sat, no signs of infection in Xrays and no lung collapses and yet like clock work every two weeks I have a bleed. It starts two days before with specks of blood in my sputum and then tow days later a warmth in my chest and boom a full fledge hempotisis. I am working out and reaching levels never thought possible (can run 20min at a time at 4.8 speed) and eveyrthing feels fine. Tomorrow I go in for my first bronch as no one knows what is going on. I am scared,so scared that I brought my twins who are 16 months old a wedding gift. I know that sounds so funny and believe me I hate to even type this but it's true. Yesterday I went to the book store and purchased two copies of "the love dare" in leather bound.

I want somehow so desperately to give them a part of me that will never be forgotten. I am doing all I can to live and fight yet I have these days where the blood comes and reality sets in. Living has never been so amazing as I have felt having these two beautiful miracles in my life and yet I am so scared that I won't be able to see them grow up. I pray so hard that God will give me enough time to have them remember me. I guess my fear is being forgotten and I want so much to let them know that I was always thinking of them even though they are only 16 months and I am shopping for a future dream of marriage that will happen perhaps 30 from now..

Am I insane? Who does stuff like this? Yet I felt so drawn to it I just had to purchase it in the fear I won't see them get married.. I pray these bleeds will go away. God I have never missed a vest treatment and they tell you to take a break from it because of the bleed yet working out and the Vest seem to help me stay alive..

Please help! The tears are flowing and I can't reach out to my hubby because I feel I need to be strong..

Kelly

hopeforever5583 · May 10, 2009

Dear Friends:
 
 I feel these days as those I am a bomb waiting to go off. I have better than ever pfts, 99-100% sat, no signs of infection in Xrays and no lung collapses and yet like clock work every two weeks I have a bleed. It starts two days before with specks of blood in my sputum and then tow days later a warmth in my chest and boom a full fledge hempotisis. I am working out and reaching levels never thought possible (can run 20min at a time at 4.8 speed) and eveyrthing feels fine. Tomorrow I go in for my first bronch as no one knows what is going on. I am scared,so scared that I brought my twins who are 16 months old a wedding gift. I know that sounds so funny and believe me I hate to even type this but it's true. Yesterday I went to the book store and purchased two copies of "the love dare" in leather bound.
 
 I want somehow so desperately to give them a part of me that will never be forgotten. I am doing all I can to live and fight yet I have these days where the blood comes and reality sets in. Living has never been so amazing as I have felt having these two beautiful miracles in my life and yet I am so scared that I won't be able to see them grow up. I pray so hard that God will give me enough time to have them remember me. I guess my fear is being forgotten and I want so much to let them know that I was always thinking of them even though they are only 16 months and I am shopping for a future dream of marriage that will happen perhaps 30 from now..
 
 Am I insane? Who does stuff like this? Yet I felt so drawn to it I just had to purchase it in the fear I won't see them get married.. I pray these bleeds will go away. God I have never missed a vest treatment and they tell you to take a break from it because of the bleed yet working out and the Vest seem to help me stay alive..
 
 Please help! The tears are flowing and I can't reach out to my hubby because I feel I need to be strong..
 
 Kelly

welshwitch · May 11, 2009

Hey Kelly,

I wanted to write because I have had hemo and I also completely know how you're feeling.

I think that it is great that you are being proactive and taking care of yourself healthwise and getting the bleeds checked out.

With CF, it is so easy to go down that road of "I'm going to die soon." I've been there many times. It's a broken record that never ends. One moment I think I have the negative thought patterns out of my head, and then something happens like hemo or a cold or just plain CF related CRAP that sets off a downward spiral of fear, scary thoughts, and a general feeling of helplessness.

Don't let CF win this way. Just with the physical, the mental can also be a beast to wrestle with. You don't know what is causing the lung bleeds--but you also have great numbers, have the capacity to work out like a real athelete and if you feel OK, you feel OK.

There are many things that cause hemo and I am sure that when you talk to your doctor, there will be some possible ways to get it under control.

But I would also say that you can let yourself go to dark, dark places with respect to your CF and that the reality you create in your head may not be the reality that is happening with your body at all.

Good luck and just know that we're all here for you!

welshwitch · May 11, 2009

Hey Kelly,

I wanted to write because I have had hemo and I also completely know how you're feeling.

I think that it is great that you are being proactive and taking care of yourself healthwise and getting the bleeds checked out.

With CF, it is so easy to go down that road of "I'm going to die soon." I've been there many times. It's a broken record that never ends. One moment I think I have the negative thought patterns out of my head, and then something happens like hemo or a cold or just plain CF related CRAP that sets off a downward spiral of fear, scary thoughts, and a general feeling of helplessness.

Don't let CF win this way. Just with the physical, the mental can also be a beast to wrestle with. You don't know what is causing the lung bleeds--but you also have great numbers, have the capacity to work out like a real athelete and if you feel OK, you feel OK.

There are many things that cause hemo and I am sure that when you talk to your doctor, there will be some possible ways to get it under control.

But I would also say that you can let yourself go to dark, dark places with respect to your CF and that the reality you create in your head may not be the reality that is happening with your body at all.

Good luck and just know that we're all here for you!

welshwitch · May 11, 2009

Hey Kelly,

I wanted to write because I have had hemo and I also completely know how you're feeling.

I think that it is great that you are being proactive and taking care of yourself healthwise and getting the bleeds checked out.

With CF, it is so easy to go down that road of "I'm going to die soon." I've been there many times. It's a broken record that never ends. One moment I think I have the negative thought patterns out of my head, and then something happens like hemo or a cold or just plain CF related CRAP that sets off a downward spiral of fear, scary thoughts, and a general feeling of helplessness.

Don't let CF win this way. Just with the physical, the mental can also be a beast to wrestle with. You don't know what is causing the lung bleeds--but you also have great numbers, have the capacity to work out like a real athelete and if you feel OK, you feel OK.

There are many things that cause hemo and I am sure that when you talk to your doctor, there will be some possible ways to get it under control.

But I would also say that you can let yourself go to dark, dark places with respect to your CF and that the reality you create in your head may not be the reality that is happening with your body at all.

Good luck and just know that we're all here for you!

welshwitch · May 11, 2009

Hey Kelly,

I wanted to write because I have had hemo and I also completely know how you're feeling.

I think that it is great that you are being proactive and taking care of yourself healthwise and getting the bleeds checked out.

With CF, it is so easy to go down that road of "I'm going to die soon." I've been there many times. It's a broken record that never ends. One moment I think I have the negative thought patterns out of my head, and then something happens like hemo or a cold or just plain CF related CRAP that sets off a downward spiral of fear, scary thoughts, and a general feeling of helplessness.

Don't let CF win this way. Just with the physical, the mental can also be a beast to wrestle with. You don't know what is causing the lung bleeds--but you also have great numbers, have the capacity to work out like a real athelete and if you feel OK, you feel OK.

There are many things that cause hemo and I am sure that when you talk to your doctor, there will be some possible ways to get it under control.

But I would also say that you can let yourself go to dark, dark places with respect to your CF and that the reality you create in your head may not be the reality that is happening with your body at all.

Good luck and just know that we're all here for you!

welshwitch · May 11, 2009

Hey Kelly,
 
 I wanted to write because I have had hemo and I also completely know how you're feeling.
 
 I think that it is great that you are being proactive and taking care of yourself healthwise and getting the bleeds checked out.
 
 With CF, it is so easy to go down that road of "I'm going to die soon." I've been there many times. It's a broken record that never ends. One moment I think I have the negative thought patterns out of my head, and then something happens like hemo or a cold or just plain CF related CRAP that sets off a downward spiral of fear, scary thoughts, and a general feeling of helplessness.
 
 Don't let CF win this way. Just with the physical, the mental can also be a beast to wrestle with. You don't know what is causing the lung bleeds--but you also have great numbers, have the capacity to work out like a real athelete and if you feel OK, you feel OK.
 
 There are many things that cause hemo and I am sure that when you talk to your doctor, there will be some possible ways to get it under control.
 
 But I would also say that you can let yourself go to dark, dark places with respect to your CF and that the reality you create in your head may not be the reality that is happening with your body at all.
 
 Good luck and just know that we're all here for you!

saveferris2009 · May 11, 2009

So I'm not sure if you're asking about the buying the book and/or feeling scared of dying of CF soon part, or if you're asking about the WTF is up with me feeling so great but having hemo part.

So I'm going to answer the latter. My apologies if this wasn't your question.

In summary, I can relate to your situation. 100% of my hemo's have been when I have felt great (PFT's like yours).

This is controversial, so please recognize EVERYONE who is reading this, this is my interpretation.

We CFer's have adapted so well to feeling sick. What I mean by this is have you ever felt maybe a tiny bit sick, but then you go on abx and after a week or so you go "WOW! i didn't realize how sh!tty I was feeling." We're just very adaptive people.

So my interpretation with my doc that when I feel great, my PFT's are great, but I have a bleed, is there is likely something that's just starting to brew in my lungs. Where you PA or whatever bacteria is colonized is typically a pretty vulnerable area with a little to a lot of damage that can be irritated by more bacteria growth/ white blood cell deaths causing hemo.

So for me, I go on IV's right away. There are other reasons such as a higher than normal white blood cell count, etc etc that help us come to this conclusion.

The irritating thing about being proactive in this sense is that there's really no way to measure success. I've had hemo for 9+ years now, and my FEV1 has actually risen over these past 9 years as opposed to the typical CF decline (not saying the rise is due to these IV's, btw...I do other things like exercise, treat my allergies, etc). Point being I have no clue if my lungs would be in the shape they're in if I didn't treat my hemo episodes in this way.

BUT that's the risk you take when you're proactive. For me and my doctor, this is the pro activity we chose to take...

BTW I had a close childhood friend of mine die of CF about a month ago. We're the same age. That same day I came home and wrote two pages of funeral requests - not because I think I'm dying anytime soon (although we could all go at any time I realize) but because I want things to be much different than typical funerals (and I haven't been to many, so this experience highlighted to me the need to put these things in writing.) I tell you all this because I don't think what you did buying the leather books is strange or weird or whatever. It makes you happy & it's harmless, so I say go for it.

saveferris2009 · May 11, 2009

So I'm not sure if you're asking about the buying the book and/or feeling scared of dying of CF soon part, or if you're asking about the WTF is up with me feeling so great but having hemo part.

So I'm going to answer the latter. My apologies if this wasn't your question.

In summary, I can relate to your situation. 100% of my hemo's have been when I have felt great (PFT's like yours).

This is controversial, so please recognize EVERYONE who is reading this, this is my interpretation.

We CFer's have adapted so well to feeling sick. What I mean by this is have you ever felt maybe a tiny bit sick, but then you go on abx and after a week or so you go "WOW! i didn't realize how sh!tty I was feeling." We're just very adaptive people.

So my interpretation with my doc that when I feel great, my PFT's are great, but I have a bleed, is there is likely something that's just starting to brew in my lungs. Where you PA or whatever bacteria is colonized is typically a pretty vulnerable area with a little to a lot of damage that can be irritated by more bacteria growth/ white blood cell deaths causing hemo.

So for me, I go on IV's right away. There are other reasons such as a higher than normal white blood cell count, etc etc that help us come to this conclusion.

The irritating thing about being proactive in this sense is that there's really no way to measure success. I've had hemo for 9+ years now, and my FEV1 has actually risen over these past 9 years as opposed to the typical CF decline (not saying the rise is due to these IV's, btw...I do other things like exercise, treat my allergies, etc). Point being I have no clue if my lungs would be in the shape they're in if I didn't treat my hemo episodes in this way.

BUT that's the risk you take when you're proactive. For me and my doctor, this is the pro activity we chose to take...

BTW I had a close childhood friend of mine die of CF about a month ago. We're the same age. That same day I came home and wrote two pages of funeral requests - not because I think I'm dying anytime soon (although we could all go at any time I realize) but because I want things to be much different than typical funerals (and I haven't been to many, so this experience highlighted to me the need to put these things in writing.) I tell you all this because I don't think what you did buying the leather books is strange or weird or whatever. It makes you happy & it's harmless, so I say go for it.

saveferris2009 · May 11, 2009

So I'm not sure if you're asking about the buying the book and/or feeling scared of dying of CF soon part, or if you're asking about the WTF is up with me feeling so great but having hemo part.

So I'm going to answer the latter. My apologies if this wasn't your question.

In summary, I can relate to your situation. 100% of my hemo's have been when I have felt great (PFT's like yours).

This is controversial, so please recognize EVERYONE who is reading this, this is my interpretation.

We CFer's have adapted so well to feeling sick. What I mean by this is have you ever felt maybe a tiny bit sick, but then you go on abx and after a week or so you go "WOW! i didn't realize how sh!tty I was feeling." We're just very adaptive people.

So my interpretation with my doc that when I feel great, my PFT's are great, but I have a bleed, is there is likely something that's just starting to brew in my lungs. Where you PA or whatever bacteria is colonized is typically a pretty vulnerable area with a little to a lot of damage that can be irritated by more bacteria growth/ white blood cell deaths causing hemo.

So for me, I go on IV's right away. There are other reasons such as a higher than normal white blood cell count, etc etc that help us come to this conclusion.

The irritating thing about being proactive in this sense is that there's really no way to measure success. I've had hemo for 9+ years now, and my FEV1 has actually risen over these past 9 years as opposed to the typical CF decline (not saying the rise is due to these IV's, btw...I do other things like exercise, treat my allergies, etc). Point being I have no clue if my lungs would be in the shape they're in if I didn't treat my hemo episodes in this way.

BUT that's the risk you take when you're proactive. For me and my doctor, this is the pro activity we chose to take...

BTW I had a close childhood friend of mine die of CF about a month ago. We're the same age. That same day I came home and wrote two pages of funeral requests - not because I think I'm dying anytime soon (although we could all go at any time I realize) but because I want things to be much different than typical funerals (and I haven't been to many, so this experience highlighted to me the need to put these things in writing.) I tell you all this because I don't think what you did buying the leather books is strange or weird or whatever. It makes you happy & it's harmless, so I say go for it.

saveferris2009 · May 11, 2009

So I'm not sure if you're asking about the buying the book and/or feeling scared of dying of CF soon part, or if you're asking about the WTF is up with me feeling so great but having hemo part.

So I'm going to answer the latter. My apologies if this wasn't your question.

In summary, I can relate to your situation. 100% of my hemo's have been when I have felt great (PFT's like yours).

This is controversial, so please recognize EVERYONE who is reading this, this is my interpretation.

We CFer's have adapted so well to feeling sick. What I mean by this is have you ever felt maybe a tiny bit sick, but then you go on abx and after a week or so you go "WOW! i didn't realize how sh!tty I was feeling." We're just very adaptive people.

So my interpretation with my doc that when I feel great, my PFT's are great, but I have a bleed, is there is likely something that's just starting to brew in my lungs. Where you PA or whatever bacteria is colonized is typically a pretty vulnerable area with a little to a lot of damage that can be irritated by more bacteria growth/ white blood cell deaths causing hemo.

So for me, I go on IV's right away. There are other reasons such as a higher than normal white blood cell count, etc etc that help us come to this conclusion.

The irritating thing about being proactive in this sense is that there's really no way to measure success. I've had hemo for 9+ years now, and my FEV1 has actually risen over these past 9 years as opposed to the typical CF decline (not saying the rise is due to these IV's, btw...I do other things like exercise, treat my allergies, etc). Point being I have no clue if my lungs would be in the shape they're in if I didn't treat my hemo episodes in this way.

BUT that's the risk you take when you're proactive. For me and my doctor, this is the pro activity we chose to take...

BTW I had a close childhood friend of mine die of CF about a month ago. We're the same age. That same day I came home and wrote two pages of funeral requests - not because I think I'm dying anytime soon (although we could all go at any time I realize) but because I want things to be much different than typical funerals (and I haven't been to many, so this experience highlighted to me the need to put these things in writing.) I tell you all this because I don't think what you did buying the leather books is strange or weird or whatever. It makes you happy & it's harmless, so I say go for it.

saveferris2009 · May 11, 2009

So I'm not sure if you're asking about the buying the book and/or feeling scared of dying of CF soon part, or if you're asking about the WTF is up with me feeling so great but having hemo part.
 
 So I'm going to answer the latter. My apologies if this wasn't your question.
 
 In summary, I can relate to your situation. 100% of my hemo's have been when I have felt great (PFT's like yours).
 
 This is controversial, so please recognize EVERYONE who is reading this, this is my interpretation.
 
 We CFer's have adapted so well to feeling sick. What I mean by this is have you ever felt maybe a tiny bit sick, but then you go on abx and after a week or so you go "WOW! i didn't realize how sh!tty I was feeling." We're just very adaptive people.
 
 So my interpretation with my doc that when I feel great, my PFT's are great, but I have a bleed, is there is likely something that's just starting to brew in my lungs. Where you PA or whatever bacteria is colonized is typically a pretty vulnerable area with a little to a lot of damage that can be irritated by more bacteria growth/ white blood cell deaths causing hemo.
 
 So for me, I go on IV's right away. There are other reasons such as a higher than normal white blood cell count, etc etc that help us come to this conclusion.
 
 The irritating thing about being proactive in this sense is that there's really no way to measure success. I've had hemo for 9+ years now, and my FEV1 has actually risen over these past 9 years as opposed to the typical CF decline (not saying the rise is due to these IV's, btw...I do other things like exercise, treat my allergies, etc). Point being I have no clue if my lungs would be in the shape they're in if I didn't treat my hemo episodes in this way.
 
 BUT that's the risk you take when you're proactive. For me and my doctor, this is the pro activity we chose to take...
 
 BTW I had a close childhood friend of mine die of CF about a month ago. We're the same age. That same day I came home and wrote two pages of funeral requests - not because I think I'm dying anytime soon (although we could all go at any time I realize) but because I want things to be much different than typical funerals (and I haven't been to many, so this experience highlighted to me the need to put these things in writing.) I tell you all this because I don't think what you did buying the leather books is strange or weird or whatever. It makes you happy & it's harmless, so I say go for it.

erock77 · May 11, 2009

I've been a chronic bleeder since I was 14 (31 now), I just had my 6th embolization. From experience, the bleeds don't always correlate w/ infection, and IV's rarely help in my case. Though I know it helps some. A few tips for you to try that I've picked up and passed on over the years:
vitamin k
CF Softgel vitamins (they have water soluble k) the K promotes clotting
Probiotics/acidopholus (helps absorb the vitamin k)
And for emergent help I carry a small bottle of hot cayenne pepper with me. It's lost some efficacy the past couple years for me, but it used to work like a charm. Mix 1/4tsp or so of cayenne w/ warm water and chug, stopped bleeds within seconds. If I was outside I'd just sprinkle some raw on my tongue and swallow. You get used to the spicyness.

Anyway, good luck w/ getting the bleeds under control. YOu and me both. I don't think it's the end of the line for you, try these treatments and if it gets worse. There's always embolization. How bad are the bleeds? How long? Does it gurgle? Splatter when you cough? Just trying to get a sense of the severity. My current doc says he sees a lot of bleeders and he hasn't seen it be fatal. Not to say there isn't a risk, and major inconvenience.

erock77 · May 11, 2009

I've been a chronic bleeder since I was 14 (31 now), I just had my 6th embolization. From experience, the bleeds don't always correlate w/ infection, and IV's rarely help in my case. Though I know it helps some. A few tips for you to try that I've picked up and passed on over the years:
vitamin k
CF Softgel vitamins (they have water soluble k) the K promotes clotting
Probiotics/acidopholus (helps absorb the vitamin k)
And for emergent help I carry a small bottle of hot cayenne pepper with me. It's lost some efficacy the past couple years for me, but it used to work like a charm. Mix 1/4tsp or so of cayenne w/ warm water and chug, stopped bleeds within seconds. If I was outside I'd just sprinkle some raw on my tongue and swallow. You get used to the spicyness.

Anyway, good luck w/ getting the bleeds under control. YOu and me both. I don't think it's the end of the line for you, try these treatments and if it gets worse. There's always embolization. How bad are the bleeds? How long? Does it gurgle? Splatter when you cough? Just trying to get a sense of the severity. My current doc says he sees a lot of bleeders and he hasn't seen it be fatal. Not to say there isn't a risk, and major inconvenience.

erock77 · May 11, 2009

I've been a chronic bleeder since I was 14 (31 now), I just had my 6th embolization. From experience, the bleeds don't always correlate w/ infection, and IV's rarely help in my case. Though I know it helps some. A few tips for you to try that I've picked up and passed on over the years:
vitamin k
CF Softgel vitamins (they have water soluble k) the K promotes clotting
Probiotics/acidopholus (helps absorb the vitamin k)
And for emergent help I carry a small bottle of hot cayenne pepper with me. It's lost some efficacy the past couple years for me, but it used to work like a charm. Mix 1/4tsp or so of cayenne w/ warm water and chug, stopped bleeds within seconds. If I was outside I'd just sprinkle some raw on my tongue and swallow. You get used to the spicyness.

Anyway, good luck w/ getting the bleeds under control. YOu and me both. I don't think it's the end of the line for you, try these treatments and if it gets worse. There's always embolization. How bad are the bleeds? How long? Does it gurgle? Splatter when you cough? Just trying to get a sense of the severity. My current doc says he sees a lot of bleeders and he hasn't seen it be fatal. Not to say there isn't a risk, and major inconvenience.

erock77 · May 11, 2009

I've been a chronic bleeder since I was 14 (31 now), I just had my 6th embolization. From experience, the bleeds don't always correlate w/ infection, and IV's rarely help in my case. Though I know it helps some. A few tips for you to try that I've picked up and passed on over the years:
vitamin k
CF Softgel vitamins (they have water soluble k) the K promotes clotting
Probiotics/acidopholus (helps absorb the vitamin k)
And for emergent help I carry a small bottle of hot cayenne pepper with me. It's lost some efficacy the past couple years for me, but it used to work like a charm. Mix 1/4tsp or so of cayenne w/ warm water and chug, stopped bleeds within seconds. If I was outside I'd just sprinkle some raw on my tongue and swallow. You get used to the spicyness.

Anyway, good luck w/ getting the bleeds under control. YOu and me both. I don't think it's the end of the line for you, try these treatments and if it gets worse. There's always embolization. How bad are the bleeds? How long? Does it gurgle? Splatter when you cough? Just trying to get a sense of the severity. My current doc says he sees a lot of bleeders and he hasn't seen it be fatal. Not to say there isn't a risk, and major inconvenience.

erock77 · May 11, 2009

I've been a chronic bleeder since I was 14 (31 now), I just had my 6th embolization. From experience, the bleeds don't always correlate w/ infection, and IV's rarely help in my case. Though I know it helps some. A few tips for you to try that I've picked up and passed on over the years:
 vitamin k
 CF Softgel vitamins (they have water soluble k) the K promotes clotting
 Probiotics/acidopholus (helps absorb the vitamin k)
 And for emergent help I carry a small bottle of hot cayenne pepper with me. It's lost some efficacy the past couple years for me, but it used to work like a charm. Mix 1/4tsp or so of cayenne w/ warm water and chug, stopped bleeds within seconds. If I was outside I'd just sprinkle some raw on my tongue and swallow. You get used to the spicyness.
 
 Anyway, good luck w/ getting the bleeds under control. YOu and me both. I don't think it's the end of the line for you, try these treatments and if it gets worse. There's always embolization. How bad are the bleeds? How long? Does it gurgle? Splatter when you cough? Just trying to get a sense of the severity. My current doc says he sees a lot of bleeders and he hasn't seen it be fatal. Not to say there isn't a risk, and major inconvenience.

Hemoptisis how often ???

New member

New member

New member

New member

New member

welshwitch

Guest

welshwitch

Guest

welshwitch

Guest

welshwitch

Guest

welshwitch

Guest

New member

New member

New member

New member

New member

Member

Member

Member

Member

Member