Hemoptysis success story

M

Mallymookcf

New member
me too!!!

i can not even type fast enough to let you all know what a relief it is to know other cf women experience hemoptysis on the period as well! i have suffered for 10 years and am still batteling trying to get someone to take me serious everytime i rush to ER coughing up blood (always on my period) they treat it as a lung infection due to my c.f everytime!!! and almost always i am completely well before the bleeding. they are not lung infections and i feel i am constantly being over medicated for a problem that is being ignored! i am on axiety medicine for this, bc as you know it is terrifying!! this past period i was hospitalized and had my second bronchial artery embolization done because i did the bleeding for the 1st 3 days of my period and after the procedure i coughed up blood the rest of the days of that period. (even after the procedure) it was a lesser amount of blood though. i am seeing an obgyn specialist in bleeding tom. to see if hormone therapy of some kind would help...ANY THOUGHTS OR SUGGESTIONS WOULD BE SO GREAT AND APPREACIATED!I am currently not on any birth control because i am prone to clotting with piccs etc... i tried mirena and it was too excruciating to be placed...not sure why i couldnt handle the placement of it??? any thoughts on the bleeding associated with menses?
 
M

Mallymookcf

New member
me too!!!

i can not even type fast enough to let you all know what a relief it is to know other cf women experience hemoptysis on the period as well! i have suffered for 10 years and am still batteling trying to get someone to take me serious everytime i rush to ER coughing up blood (always on my period) they treat it as a lung infection due to my c.f everytime!!! and almost always i am completely well before the bleeding. they are not lung infections and i feel i am constantly being over medicated for a problem that is being ignored! i am on axiety medicine for this, bc as you know it is terrifying!! this past period i was hospitalized and had my second bronchial artery embolization done because i did the bleeding for the 1st 3 days of my period and after the procedure i coughed up blood the rest of the days of that period. (even after the procedure) it was a lesser amount of blood though. i am seeing an obgyn specialist in bleeding tom. to see if hormone therapy of some kind would help...ANY THOUGHTS OR SUGGESTIONS WOULD BE SO GREAT AND APPREACIATED!I am currently not on any birth control because i am prone to clotting with piccs etc... i tried mirena and it was too excruciating to be placed...not sure why i couldnt handle the placement of it??? any thoughts on the bleeding associated with menses?
 
M

Mallymookcf

New member
me too!!!

i can not even type fast enough to let you all know what a relief it is to know other cf women experience hemoptysis on the period as well! i have suffered for 10 years and am still batteling trying to get someone to take me serious everytime i rush to ER coughing up blood (always on my period) they treat it as a lung infection due to my c.f everytime!!! and almost always i am completely well before the bleeding. they are not lung infections and i feel i am constantly being over medicated for a problem that is being ignored! i am on axiety medicine for this, bc as you know it is terrifying!! this past period i was hospitalized and had my second bronchial artery embolization done because i did the bleeding for the 1st 3 days of my period and after the procedure i coughed up blood the rest of the days of that period. (even after the procedure) it was a lesser amount of blood though. i am seeing an obgyn specialist in bleeding tom. to see if hormone therapy of some kind would help...ANY THOUGHTS OR SUGGESTIONS WOULD BE SO GREAT AND APPREACIATED!I am currently not on any birth control because i am prone to clotting with piccs etc... i tried mirena and it was too excruciating to be placed...not sure why i couldnt handle the placement of it??? any thoughts on the bleeding associated with menses?
 
M

Mallymookcf

New member
me too!!!

i can not even type fast enough to let you all know what a relief it is to know other cf women experience hemoptysis on the period as well! i have suffered for 10 years and am still batteling trying to get someone to take me serious everytime i rush to ER coughing up blood (always on my period) they treat it as a lung infection due to my c.f everytime!!! and almost always i am completely well before the bleeding. they are not lung infections and i feel i am constantly being over medicated for a problem that is being ignored! i am on axiety medicine for this, bc as you know it is terrifying!! this past period i was hospitalized and had my second bronchial artery embolization done because i did the bleeding for the 1st 3 days of my period and after the procedure i coughed up blood the rest of the days of that period. (even after the procedure) it was a lesser amount of blood though. i am seeing an obgyn specialist in bleeding tom. to see if hormone therapy of some kind would help...ANY THOUGHTS OR SUGGESTIONS WOULD BE SO GREAT AND APPREACIATED!I am currently not on any birth control because i am prone to clotting with piccs etc... i tried mirena and it was too excruciating to be placed...not sure why i couldnt handle the placement of it??? any thoughts on the bleeding associated with menses?
 
M

Mallymookcf

New member
me too!!!

i can not even type fast enough to let you all know what a relief it is to know other cf women experience hemoptysis on the period as well! i have suffered for 10 years and am still batteling trying to get someone to take me serious everytime i rush to ER coughing up blood (always on my period) they treat it as a lung infection due to my c.f everytime!!! and almost always i am completely well before the bleeding. they are not lung infections and i feel i am constantly being over medicated for a problem that is being ignored! i am on axiety medicine for this, bc as you know it is terrifying!! this past period i was hospitalized and had my second bronchial artery embolization done because i did the bleeding for the 1st 3 days of my period and after the procedure i coughed up blood the rest of the days of that period. (even after the procedure) it was a lesser amount of blood though. i am seeing an obgyn specialist in bleeding tom. to see if hormone therapy of some kind would help...ANY THOUGHTS OR SUGGESTIONS WOULD BE SO GREAT AND APPREACIATED!I am currently not on any birth control because i am prone to clotting with piccs etc... i tried mirena and it was too excruciating to be placed...not sure why i couldnt handle the placement of it??? any thoughts on the bleeding associated with menses?
 
J

jmiller

New member
me too!!!

Isn't it great to know that you aren't the only one?!?! And the things you are noticing are legitimate! As I said in the original post, I have struggled with hemoptysis during my period for several years. I see that you are a mommy too- did the hemoptysis pattern change during your pregnancy? I had way fewer bleeds. I suspect that the ones I did have were due in part to changing hormonal levels (since those do fluctuate during pregnancy).

I am SO interested to see what you learn. When I first noticed the correlation they tried to tell me it may be "catamenial hemoptysis" or something like that - basically endometriosis of the lungs... but this was not the case. I think that my bleeds are caused by a combination of factors and something about my period week is the straw the breaks the camels back.

The contributing factors I believe are:
Cystic Fibrosis (duh)
Inflammation
Hormones
Caffeine
Extra sugar or processed foods (Since these cause inflammation)
Smoke or irritating household products
Run down immune system
Any "extra" junk in my lungs

What I am trying to do is wipe out as many of those factors as I can with the hope that my vessels will be able to stay in tact during periods. So far it seems to be helping!

Please let us know what you learn! And please ask if there is anything about a period that makes the pulmonary vessels weaker.

Thanks for posting!
 
J

jmiller

New member
me too!!!

Isn't it great to know that you aren't the only one?!?! And the things you are noticing are legitimate! As I said in the original post, I have struggled with hemoptysis during my period for several years. I see that you are a mommy too- did the hemoptysis pattern change during your pregnancy? I had way fewer bleeds. I suspect that the ones I did have were due in part to changing hormonal levels (since those do fluctuate during pregnancy).

I am SO interested to see what you learn. When I first noticed the correlation they tried to tell me it may be "catamenial hemoptysis" or something like that - basically endometriosis of the lungs... but this was not the case. I think that my bleeds are caused by a combination of factors and something about my period week is the straw the breaks the camels back.

The contributing factors I believe are:
Cystic Fibrosis (duh)
Inflammation
Hormones
Caffeine
Extra sugar or processed foods (Since these cause inflammation)
Smoke or irritating household products
Run down immune system
Any "extra" junk in my lungs

What I am trying to do is wipe out as many of those factors as I can with the hope that my vessels will be able to stay in tact during periods. So far it seems to be helping!

Please let us know what you learn! And please ask if there is anything about a period that makes the pulmonary vessels weaker.

Thanks for posting!
 
J

jmiller

New member
me too!!!

Isn't it great to know that you aren't the only one?!?! And the things you are noticing are legitimate! As I said in the original post, I have struggled with hemoptysis during my period for several years. I see that you are a mommy too- did the hemoptysis pattern change during your pregnancy? I had way fewer bleeds. I suspect that the ones I did have were due in part to changing hormonal levels (since those do fluctuate during pregnancy).

I am SO interested to see what you learn. When I first noticed the correlation they tried to tell me it may be "catamenial hemoptysis" or something like that - basically endometriosis of the lungs... but this was not the case. I think that my bleeds are caused by a combination of factors and something about my period week is the straw the breaks the camels back.

The contributing factors I believe are:
Cystic Fibrosis (duh)
Inflammation
Hormones
Caffeine
Extra sugar or processed foods (Since these cause inflammation)
Smoke or irritating household products
Run down immune system
Any "extra" junk in my lungs

What I am trying to do is wipe out as many of those factors as I can with the hope that my vessels will be able to stay in tact during periods. So far it seems to be helping!

Please let us know what you learn! And please ask if there is anything about a period that makes the pulmonary vessels weaker.

Thanks for posting!
 
J

jmiller

New member
me too!!!

Isn't it great to know that you aren't the only one?!?! And the things you are noticing are legitimate! As I said in the original post, I have struggled with hemoptysis during my period for several years. I see that you are a mommy too- did the hemoptysis pattern change during your pregnancy? I had way fewer bleeds. I suspect that the ones I did have were due in part to changing hormonal levels (since those do fluctuate during pregnancy).

I am SO interested to see what you learn. When I first noticed the correlation they tried to tell me it may be "catamenial hemoptysis" or something like that - basically endometriosis of the lungs... but this was not the case. I think that my bleeds are caused by a combination of factors and something about my period week is the straw the breaks the camels back.

The contributing factors I believe are:
Cystic Fibrosis (duh)
Inflammation
Hormones
Caffeine
Extra sugar or processed foods (Since these cause inflammation)
Smoke or irritating household products
Run down immune system
Any "extra" junk in my lungs

What I am trying to do is wipe out as many of those factors as I can with the hope that my vessels will be able to stay in tact during periods. So far it seems to be helping!

Please let us know what you learn! And please ask if there is anything about a period that makes the pulmonary vessels weaker.

Thanks for posting!
 
J

jmiller

New member
me too!!!

Isn't it great to know that you aren't the only one?!?! And the things you are noticing are legitimate! As I said in the original post, I have struggled with hemoptysis during my period for several years. I see that you are a mommy too- did the hemoptysis pattern change during your pregnancy? I had way fewer bleeds. I suspect that the ones I did have were due in part to changing hormonal levels (since those do fluctuate during pregnancy).
<br />
<br />I am SO interested to see what you learn. When I first noticed the correlation they tried to tell me it may be "catamenial hemoptysis" or something like that - basically endometriosis of the lungs... but this was not the case. I think that my bleeds are caused by a combination of factors and something about my period week is the straw the breaks the camels back.
<br />
<br />The contributing factors I believe are:
<br />Cystic Fibrosis (duh)
<br />Inflammation
<br />Hormones
<br />Caffeine
<br />Extra sugar or processed foods (Since these cause inflammation)
<br />Smoke or irritating household products
<br />Run down immune system
<br />Any "extra" junk in my lungs
<br />
<br />What I am trying to do is wipe out as many of those factors as I can with the hope that my vessels will be able to stay in tact during periods. So far it seems to be helping!
<br />
<br />Please let us know what you learn! And please ask if there is anything about a period that makes the pulmonary vessels weaker.
<br />
<br />Thanks for posting!
 
M

Mallymookcf

New member
me too!!!

Actualluy i only had hemoptysis twice while pregnant! it was awesome. i had coughed up blood and suspected i could be pregnant (maybe a rush of hormones i thought?) i was so exited because i actually was!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> The only other time i did it was when i was in labor and had just got to hospital for c-section. It is like everytime i have a major hormonal switch it does it. well then i was hemoptysis free for 8 months after the birth of my son. i went today to a obgyn specialist that deals with bleeding disorders. He listened to me and we discussed the strange coorelation with my periods and the hemoptysis. He suspected it was pulmonary endometriosis as well. (he narrowed it to a specific kind of pulmonary endometriosis, but i forgot the name.. starts with a T) He is putting me on a very high level of progesterone. he explained that the reason i had not had it as much during my pregnancy and 8 months after was because my body was producing large amounts of progestrone. Apparently the way i understood is if you have endometriosis it is effected by the dips of progesterone. So i start on it tonight and will definitly keep you posted as to weather it helps me! i am hopeful that even if i do not have "pulmonary endometriosis" that stopping my hormones from surging would have to help even if it only helps the dialtion of blood vessels. i am going to try some of your suggestions as well...but i love sweets so that will be hard...haha! but i can see how they all good benefit! By the way i am 24 yrs old and i have a 14 month old son!! Married for almost 3 years. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Mallory
God Bless
 
M

Mallymookcf

New member
me too!!!

Actualluy i only had hemoptysis twice while pregnant! it was awesome. i had coughed up blood and suspected i could be pregnant (maybe a rush of hormones i thought?) i was so exited because i actually was!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> The only other time i did it was when i was in labor and had just got to hospital for c-section. It is like everytime i have a major hormonal switch it does it. well then i was hemoptysis free for 8 months after the birth of my son. i went today to a obgyn specialist that deals with bleeding disorders. He listened to me and we discussed the strange coorelation with my periods and the hemoptysis. He suspected it was pulmonary endometriosis as well. (he narrowed it to a specific kind of pulmonary endometriosis, but i forgot the name.. starts with a T) He is putting me on a very high level of progesterone. he explained that the reason i had not had it as much during my pregnancy and 8 months after was because my body was producing large amounts of progestrone. Apparently the way i understood is if you have endometriosis it is effected by the dips of progesterone. So i start on it tonight and will definitly keep you posted as to weather it helps me! i am hopeful that even if i do not have "pulmonary endometriosis" that stopping my hormones from surging would have to help even if it only helps the dialtion of blood vessels. i am going to try some of your suggestions as well...but i love sweets so that will be hard...haha! but i can see how they all good benefit! By the way i am 24 yrs old and i have a 14 month old son!! Married for almost 3 years. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Mallory
God Bless
 
M

Mallymookcf

New member
me too!!!

Actualluy i only had hemoptysis twice while pregnant! it was awesome. i had coughed up blood and suspected i could be pregnant (maybe a rush of hormones i thought?) i was so exited because i actually was!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> The only other time i did it was when i was in labor and had just got to hospital for c-section. It is like everytime i have a major hormonal switch it does it. well then i was hemoptysis free for 8 months after the birth of my son. i went today to a obgyn specialist that deals with bleeding disorders. He listened to me and we discussed the strange coorelation with my periods and the hemoptysis. He suspected it was pulmonary endometriosis as well. (he narrowed it to a specific kind of pulmonary endometriosis, but i forgot the name.. starts with a T) He is putting me on a very high level of progesterone. he explained that the reason i had not had it as much during my pregnancy and 8 months after was because my body was producing large amounts of progestrone. Apparently the way i understood is if you have endometriosis it is effected by the dips of progesterone. So i start on it tonight and will definitly keep you posted as to weather it helps me! i am hopeful that even if i do not have "pulmonary endometriosis" that stopping my hormones from surging would have to help even if it only helps the dialtion of blood vessels. i am going to try some of your suggestions as well...but i love sweets so that will be hard...haha! but i can see how they all good benefit! By the way i am 24 yrs old and i have a 14 month old son!! Married for almost 3 years. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Mallory
God Bless
 
M

Mallymookcf

New member
me too!!!

Actualluy i only had hemoptysis twice while pregnant! it was awesome. i had coughed up blood and suspected i could be pregnant (maybe a rush of hormones i thought?) i was so exited because i actually was!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> The only other time i did it was when i was in labor and had just got to hospital for c-section. It is like everytime i have a major hormonal switch it does it. well then i was hemoptysis free for 8 months after the birth of my son. i went today to a obgyn specialist that deals with bleeding disorders. He listened to me and we discussed the strange coorelation with my periods and the hemoptysis. He suspected it was pulmonary endometriosis as well. (he narrowed it to a specific kind of pulmonary endometriosis, but i forgot the name.. starts with a T) He is putting me on a very high level of progesterone. he explained that the reason i had not had it as much during my pregnancy and 8 months after was because my body was producing large amounts of progestrone. Apparently the way i understood is if you have endometriosis it is effected by the dips of progesterone. So i start on it tonight and will definitly keep you posted as to weather it helps me! i am hopeful that even if i do not have "pulmonary endometriosis" that stopping my hormones from surging would have to help even if it only helps the dialtion of blood vessels. i am going to try some of your suggestions as well...but i love sweets so that will be hard...haha! but i can see how they all good benefit! By the way i am 24 yrs old and i have a 14 month old son!! Married for almost 3 years. <img src="i/expressions/face-icon-small-smile.gif" border="0">
Mallory
God Bless
 
M

Mallymookcf

New member
me too!!!

Actualluy i only had hemoptysis twice while pregnant! it was awesome. i had coughed up blood and suspected i could be pregnant (maybe a rush of hormones i thought?) i was so exited because i actually was!! <img src="i/expressions/face-icon-small-smile.gif" border="0"> The only other time i did it was when i was in labor and had just got to hospital for c-section. It is like everytime i have a major hormonal switch it does it. well then i was hemoptysis free for 8 months after the birth of my son. i went today to a obgyn specialist that deals with bleeding disorders. He listened to me and we discussed the strange coorelation with my periods and the hemoptysis. He suspected it was pulmonary endometriosis as well. (he narrowed it to a specific kind of pulmonary endometriosis, but i forgot the name.. starts with a T) He is putting me on a very high level of progesterone. he explained that the reason i had not had it as much during my pregnancy and 8 months after was because my body was producing large amounts of progestrone. Apparently the way i understood is if you have endometriosis it is effected by the dips of progesterone. So i start on it tonight and will definitly keep you posted as to weather it helps me! i am hopeful that even if i do not have "pulmonary endometriosis" that stopping my hormones from surging would have to help even if it only helps the dialtion of blood vessels. i am going to try some of your suggestions as well...but i love sweets so that will be hard...haha! but i can see how they all good benefit! By the way i am 24 yrs old and i have a 14 month old son!! Married for almost 3 years. <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />Mallory
<br />God Bless
 
M

Mallymookcf

New member
me too!!!

p.s. also it is a good for of birth control! It differs from the progesterone only pill in that the levels are much higher that it completely stops your ovaries (therefore completely effective) . And i am proned to blood clots through picc lines so regular birth control with estrogen is not a good option for me. just thought i would throw that out there to you in case you deal with blood clotting issues too... <img src="i/expressions/face-icon-small-smile.gif" border="0">
Mallory
 
M

Mallymookcf

New member
me too!!!

p.s. also it is a good for of birth control! It differs from the progesterone only pill in that the levels are much higher that it completely stops your ovaries (therefore completely effective) . And i am proned to blood clots through picc lines so regular birth control with estrogen is not a good option for me. just thought i would throw that out there to you in case you deal with blood clotting issues too... <img src="i/expressions/face-icon-small-smile.gif" border="0">
Mallory
 
M

Mallymookcf

New member
me too!!!

p.s. also it is a good for of birth control! It differs from the progesterone only pill in that the levels are much higher that it completely stops your ovaries (therefore completely effective) . And i am proned to blood clots through picc lines so regular birth control with estrogen is not a good option for me. just thought i would throw that out there to you in case you deal with blood clotting issues too... <img src="i/expressions/face-icon-small-smile.gif" border="0">
Mallory
 
M

Mallymookcf

New member
me too!!!

p.s. also it is a good for of birth control! It differs from the progesterone only pill in that the levels are much higher that it completely stops your ovaries (therefore completely effective) . And i am proned to blood clots through picc lines so regular birth control with estrogen is not a good option for me. just thought i would throw that out there to you in case you deal with blood clotting issues too... <img src="i/expressions/face-icon-small-smile.gif" border="0">
Mallory
 
M

Mallymookcf

New member
me too!!!

p.s. also it is a good for of birth control! It differs from the progesterone only pill in that the levels are much higher that it completely stops your ovaries (therefore completely effective) . And i am proned to blood clots through picc lines so regular birth control with estrogen is not a good option for me. just thought i would throw that out there to you in case you deal with blood clotting issues too... <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />Mallory
 
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