Hemoptysis success story

jmiller · Jan 18, 2010

I am one of the CFers that struggle with bouts of hemoptysis. I am 26 and my lung function is good (in the 90s), I run everyday, have an 18-month old son, and am in good health... BUT hemoptysis has crippled my ability to do everything I need to for my health. Blood feeds infection, bleeds make me timid with airway clearnance, running, etc. I am told to avoid pulmozyme and HS for a couple days after a bleed... all in all it is a viscious cycle that frustrates me when I want to do ALL I can for my health.

I have been searching for answers for quite some time. There is an undeniable correlation with my menstrual cycle- lung bleed every time I have a period (sorry for the details- but we are all pretty comfortable with talking about gross bodily stuff here). EVERY time. For years. I started to suspect that inflammation was contributing so I have made the following changes in the past few months:

<UL>Allery testing (found out I have no allergies!! Yay that my body can funciton in that capacity!)
Removing harmful chemicals from the house and switching to all organic cleaners
Removing excess sugars and processed foods from my diet- sticking to fruits, veggies, fish, chicken, nuts- and limiting the other stuff.
Zithromax 3 times per week
Vitamins C, B-50, and B-12
Fish oil</UL>

With this new approach I made it through the holidays (around alot of sick people- including my husband and son) and didn't catch a thing. I also made it through my most recent cycle bleed free!!!!! I am running 7 miles 6 days a week and feel so much better. Praise God! Thank you to everyone for suggestions in private messages on tricks to try. We will see how long I can keep the streakless (blood) streak alive.

jmiller · Jan 18, 2010

I am one of the CFers that struggle with bouts of hemoptysis. I am 26 and my lung function is good (in the 90s), I run everyday, have an 18-month old son, and am in good health... BUT hemoptysis has crippled my ability to do everything I need to for my health. Blood feeds infection, bleeds make me timid with airway clearnance, running, etc. I am told to avoid pulmozyme and HS for a couple days after a bleed... all in all it is a viscious cycle that frustrates me when I want to do ALL I can for my health.

I have been searching for answers for quite some time. There is an undeniable correlation with my menstrual cycle- lung bleed every time I have a period (sorry for the details- but we are all pretty comfortable with talking about gross bodily stuff here). EVERY time. For years. I started to suspect that inflammation was contributing so I have made the following changes in the past few months:

<UL>Allery testing (found out I have no allergies!! Yay that my body can funciton in that capacity!)
Removing harmful chemicals from the house and switching to all organic cleaners
Removing excess sugars and processed foods from my diet- sticking to fruits, veggies, fish, chicken, nuts- and limiting the other stuff.
Zithromax 3 times per week
Vitamins C, B-50, and B-12
Fish oil</UL>

With this new approach I made it through the holidays (around alot of sick people- including my husband and son) and didn't catch a thing. I also made it through my most recent cycle bleed free!!!!! I am running 7 miles 6 days a week and feel so much better. Praise God! Thank you to everyone for suggestions in private messages on tricks to try. We will see how long I can keep the streakless (blood) streak alive.

jmiller · Jan 18, 2010

I am one of the CFers that struggle with bouts of hemoptysis. I am 26 and my lung function is good (in the 90s), I run everyday, have an 18-month old son, and am in good health... BUT hemoptysis has crippled my ability to do everything I need to for my health. Blood feeds infection, bleeds make me timid with airway clearnance, running, etc. I am told to avoid pulmozyme and HS for a couple days after a bleed... all in all it is a viscious cycle that frustrates me when I want to do ALL I can for my health.

I have been searching for answers for quite some time. There is an undeniable correlation with my menstrual cycle- lung bleed every time I have a period (sorry for the details- but we are all pretty comfortable with talking about gross bodily stuff here). EVERY time. For years. I started to suspect that inflammation was contributing so I have made the following changes in the past few months:

<UL>Allery testing (found out I have no allergies!! Yay that my body can funciton in that capacity!)
Removing harmful chemicals from the house and switching to all organic cleaners
Removing excess sugars and processed foods from my diet- sticking to fruits, veggies, fish, chicken, nuts- and limiting the other stuff.
Zithromax 3 times per week
Vitamins C, B-50, and B-12
Fish oil</UL>

With this new approach I made it through the holidays (around alot of sick people- including my husband and son) and didn't catch a thing. I also made it through my most recent cycle bleed free!!!!! I am running 7 miles 6 days a week and feel so much better. Praise God! Thank you to everyone for suggestions in private messages on tricks to try. We will see how long I can keep the streakless (blood) streak alive.

jmiller · Jan 18, 2010

I am one of the CFers that struggle with bouts of hemoptysis. I am 26 and my lung function is good (in the 90s), I run everyday, have an 18-month old son, and am in good health... BUT hemoptysis has crippled my ability to do everything I need to for my health. Blood feeds infection, bleeds make me timid with airway clearnance, running, etc. I am told to avoid pulmozyme and HS for a couple days after a bleed... all in all it is a viscious cycle that frustrates me when I want to do ALL I can for my health.

I have been searching for answers for quite some time. There is an undeniable correlation with my menstrual cycle- lung bleed every time I have a period (sorry for the details- but we are all pretty comfortable with talking about gross bodily stuff here). EVERY time. For years. I started to suspect that inflammation was contributing so I have made the following changes in the past few months:

<UL>Allery testing (found out I have no allergies!! Yay that my body can funciton in that capacity!)
Removing harmful chemicals from the house and switching to all organic cleaners
Removing excess sugars and processed foods from my diet- sticking to fruits, veggies, fish, chicken, nuts- and limiting the other stuff.
Zithromax 3 times per week
Vitamins C, B-50, and B-12
Fish oil</UL>

With this new approach I made it through the holidays (around alot of sick people- including my husband and son) and didn't catch a thing. I also made it through my most recent cycle bleed free!!!!! I am running 7 miles 6 days a week and feel so much better. Praise God! Thank you to everyone for suggestions in private messages on tricks to try. We will see how long I can keep the streakless (blood) streak alive.

jmiller · Jan 18, 2010

I am one of the CFers that struggle with bouts of hemoptysis. I am 26 and my lung function is good (in the 90s), I run everyday, have an 18-month old son, and am in good health... BUT hemoptysis has crippled my ability to do everything I need to for my health. Blood feeds infection, bleeds make me timid with airway clearnance, running, etc. I am told to avoid pulmozyme and HS for a couple days after a bleed... all in all it is a viscious cycle that frustrates me when I want to do ALL I can for my health.
 
 I have been searching for answers for quite some time. There is an undeniable correlation with my menstrual cycle- lung bleed every time I have a period (sorry for the details- but we are all pretty comfortable with talking about gross bodily stuff here). EVERY time. For years. I started to suspect that inflammation was contributing so I have made the following changes in the past few months:
 
 <UL>Allery testing (found out I have no allergies!! Yay that my body can funciton in that capacity!)
 Removing harmful chemicals from the house and switching to all organic cleaners
 Removing excess sugars and processed foods from my diet- sticking to fruits, veggies, fish, chicken, nuts- and limiting the other stuff.
 Zithromax 3 times per week
 Vitamins C, B-50, and B-12
 Fish oil</UL>
 
 With this new approach I made it through the holidays (around alot of sick people- including my husband and son) and didn't catch a thing. I also made it through my most recent cycle bleed free!!!!! I am running 7 miles 6 days a week and feel so much better. Praise God! Thank you to everyone for suggestions in private messages on tricks to try. We will see how long I can keep the streakless (blood) streak alive.

saveferris2009 · Jan 18, 2010

Great to hear!

As you said, hemoptysis can be just as harmful psychologically as it is physically.

Congrats on curbing the hemo - I myself have done some of the things you have done and I think it has helped.

Exercise is more of a key for me than I think I realized - it helps me clear mucus that might be stuck causing hemoptysis and it helps me reduce inflammation.

Recently I got a mirena IUD inserted because I typically get hemoptysis about 7 days before my period (not every month, but every time I did bleed it was about a week before my period started, like clockwork).

I was on estrogen based birth control for 15 years to control looooong periods (think 20+ days), but since I keep throwing blood clots in my PICC lines, estrogen-based BC just wasn't a smart idea for me to continue.

So Mirena is only progesterone. For my first period while on progesteroine I had my period for about 20 days, which didn't make me happy. But since my period stopped I feel quite a bit better than I have since summertime (not sure if it's a coincidence or not) and knock on wood no bleeds.

Anyway, I really appreciate you sharing your story - it's so amazing to hear someome have success with this horrifying part of CF.

And 7 miles - holy cow. My FEV1 is in the 90s as well and I don't think I could ever do that. Congrats! (I'll stick to my hard core Jillian Michaels videos <img src="i/expressions/face-icon-small-wink.gif" border="0"> )

saveferris2009 · Jan 18, 2010

Great to hear!

As you said, hemoptysis can be just as harmful psychologically as it is physically.

Congrats on curbing the hemo - I myself have done some of the things you have done and I think it has helped.

Exercise is more of a key for me than I think I realized - it helps me clear mucus that might be stuck causing hemoptysis and it helps me reduce inflammation.

Recently I got a mirena IUD inserted because I typically get hemoptysis about 7 days before my period (not every month, but every time I did bleed it was about a week before my period started, like clockwork).

I was on estrogen based birth control for 15 years to control looooong periods (think 20+ days), but since I keep throwing blood clots in my PICC lines, estrogen-based BC just wasn't a smart idea for me to continue.

So Mirena is only progesterone. For my first period while on progesteroine I had my period for about 20 days, which didn't make me happy. But since my period stopped I feel quite a bit better than I have since summertime (not sure if it's a coincidence or not) and knock on wood no bleeds.

Anyway, I really appreciate you sharing your story - it's so amazing to hear someome have success with this horrifying part of CF.

And 7 miles - holy cow. My FEV1 is in the 90s as well and I don't think I could ever do that. Congrats! (I'll stick to my hard core Jillian Michaels videos <img src="i/expressions/face-icon-small-wink.gif" border="0"> )

saveferris2009 · Jan 18, 2010

Great to hear!

As you said, hemoptysis can be just as harmful psychologically as it is physically.

Congrats on curbing the hemo - I myself have done some of the things you have done and I think it has helped.

Exercise is more of a key for me than I think I realized - it helps me clear mucus that might be stuck causing hemoptysis and it helps me reduce inflammation.

Recently I got a mirena IUD inserted because I typically get hemoptysis about 7 days before my period (not every month, but every time I did bleed it was about a week before my period started, like clockwork).

I was on estrogen based birth control for 15 years to control looooong periods (think 20+ days), but since I keep throwing blood clots in my PICC lines, estrogen-based BC just wasn't a smart idea for me to continue.

So Mirena is only progesterone. For my first period while on progesteroine I had my period for about 20 days, which didn't make me happy. But since my period stopped I feel quite a bit better than I have since summertime (not sure if it's a coincidence or not) and knock on wood no bleeds.

Anyway, I really appreciate you sharing your story - it's so amazing to hear someome have success with this horrifying part of CF.

And 7 miles - holy cow. My FEV1 is in the 90s as well and I don't think I could ever do that. Congrats! (I'll stick to my hard core Jillian Michaels videos <img src="i/expressions/face-icon-small-wink.gif" border="0"> )

saveferris2009 · Jan 18, 2010

Great to hear!

As you said, hemoptysis can be just as harmful psychologically as it is physically.

Congrats on curbing the hemo - I myself have done some of the things you have done and I think it has helped.

Exercise is more of a key for me than I think I realized - it helps me clear mucus that might be stuck causing hemoptysis and it helps me reduce inflammation.

Recently I got a mirena IUD inserted because I typically get hemoptysis about 7 days before my period (not every month, but every time I did bleed it was about a week before my period started, like clockwork).

I was on estrogen based birth control for 15 years to control looooong periods (think 20+ days), but since I keep throwing blood clots in my PICC lines, estrogen-based BC just wasn't a smart idea for me to continue.

So Mirena is only progesterone. For my first period while on progesteroine I had my period for about 20 days, which didn't make me happy. But since my period stopped I feel quite a bit better than I have since summertime (not sure if it's a coincidence or not) and knock on wood no bleeds.

Anyway, I really appreciate you sharing your story - it's so amazing to hear someome have success with this horrifying part of CF.

And 7 miles - holy cow. My FEV1 is in the 90s as well and I don't think I could ever do that. Congrats! (I'll stick to my hard core Jillian Michaels videos <img src="i/expressions/face-icon-small-wink.gif" border="0"> )

saveferris2009 · Jan 18, 2010

Great to hear!
 
 As you said, hemoptysis can be just as harmful psychologically as it is physically.
 
 Congrats on curbing the hemo - I myself have done some of the things you have done and I think it has helped.
 
 Exercise is more of a key for me than I think I realized - it helps me clear mucus that might be stuck causing hemoptysis and it helps me reduce inflammation.
 
 Recently I got a mirena IUD inserted because I typically get hemoptysis about 7 days before my period (not every month, but every time I did bleed it was about a week before my period started, like clockwork).
 
 I was on estrogen based birth control for 15 years to control looooong periods (think 20+ days), but since I keep throwing blood clots in my PICC lines, estrogen-based BC just wasn't a smart idea for me to continue.
 
 So Mirena is only progesterone. For my first period while on progesteroine I had my period for about 20 days, which didn't make me happy. But since my period stopped I feel quite a bit better than I have since summertime (not sure if it's a coincidence or not) and knock on wood no bleeds.
 
 Anyway, I really appreciate you sharing your story - it's so amazing to hear someome have success with this horrifying part of CF.
 
 And 7 miles - holy cow. My FEV1 is in the 90s as well and I don't think I could ever do that. Congrats! (I'll stick to my hard core Jillian Michaels videos <img src="i/expressions/face-icon-small-wink.gif" border="0"> )

jmiller · Jan 18, 2010

Hi Amy! Thanks for the note.

I tried the "skipping my period" approach after having Max in July of 2008. While breastfeeding and on the progesterone-only pill, I didn't have a bleed from Sept-Jan. So we thought I had the hemoptysis under control. (at least until I wanted to start having periods again) Then I had a very big bleed in Feb 2009 that required the embolization. Since then I have decided to avoid the pill all together and try some other approaches.

Didn't you say that one of your docs mentioned that the hormones associated with peiods make our vessels weaker? Are there any docs who have really studied this correlation? I mean, that sounds like the perfect dissertation topic to me? <img src="i/expressions/face-icon-small-smile.gif" border="0">

jmiller · Jan 18, 2010

Hi Amy! Thanks for the note.

I tried the "skipping my period" approach after having Max in July of 2008. While breastfeeding and on the progesterone-only pill, I didn't have a bleed from Sept-Jan. So we thought I had the hemoptysis under control. (at least until I wanted to start having periods again) Then I had a very big bleed in Feb 2009 that required the embolization. Since then I have decided to avoid the pill all together and try some other approaches.

Didn't you say that one of your docs mentioned that the hormones associated with peiods make our vessels weaker? Are there any docs who have really studied this correlation? I mean, that sounds like the perfect dissertation topic to me? <img src="i/expressions/face-icon-small-smile.gif" border="0">

jmiller · Jan 18, 2010

Hi Amy! Thanks for the note.

I tried the "skipping my period" approach after having Max in July of 2008. While breastfeeding and on the progesterone-only pill, I didn't have a bleed from Sept-Jan. So we thought I had the hemoptysis under control. (at least until I wanted to start having periods again) Then I had a very big bleed in Feb 2009 that required the embolization. Since then I have decided to avoid the pill all together and try some other approaches.

Didn't you say that one of your docs mentioned that the hormones associated with peiods make our vessels weaker? Are there any docs who have really studied this correlation? I mean, that sounds like the perfect dissertation topic to me? <img src="i/expressions/face-icon-small-smile.gif" border="0">

jmiller · Jan 18, 2010

Hi Amy! Thanks for the note.

I tried the "skipping my period" approach after having Max in July of 2008. While breastfeeding and on the progesterone-only pill, I didn't have a bleed from Sept-Jan. So we thought I had the hemoptysis under control. (at least until I wanted to start having periods again) Then I had a very big bleed in Feb 2009 that required the embolization. Since then I have decided to avoid the pill all together and try some other approaches.

Didn't you say that one of your docs mentioned that the hormones associated with peiods make our vessels weaker? Are there any docs who have really studied this correlation? I mean, that sounds like the perfect dissertation topic to me? <img src="i/expressions/face-icon-small-smile.gif" border="0">

jmiller · Jan 18, 2010

Hi Amy! Thanks for the note.
 
 I tried the "skipping my period" approach after having Max in July of 2008. While breastfeeding and on the progesterone-only pill, I didn't have a bleed from Sept-Jan. So we thought I had the hemoptysis under control. (at least until I wanted to start having periods again) Then I had a very big bleed in Feb 2009 that required the embolization. Since then I have decided to avoid the pill all together and try some other approaches.
 
 Didn't you say that one of your docs mentioned that the hormones associated with peiods make our vessels weaker? Are there any docs who have really studied this correlation? I mean, that sounds like the perfect dissertation topic to me? <img src="i/expressions/face-icon-small-smile.gif" border="0">

jmiller · Jan 18, 2010