hemoptysis again

[mich]

Hello, from the new girl.

I started my Pulmozyme a little while ago and after less than a minute, I coughed and thought to myself that I coughed up a nice thick plug. So I got a tissue & there was the blood clot. I've still coughing up pure blood every time I cough which is every couple of minutes. I stopped the Pulmozyme & am not going to do my inhaled Aztreonam tonight, in case that irrates my lungs more.

Funny thing is, I feel fine. I was actually feeling better than I have in a long time. I hemoptysize a lot, so I know when to call the doctor. I hope it calms down because I don't want to spend the night in the er.

Thanks for listening,
Take care,
Michelle
33 wcf

 

[mich]

Hello, from the new girl.

I started my Pulmozyme a little while ago and after less than a minute, I coughed and thought to myself that I coughed up a nice thick plug. So I got a tissue & there was the blood clot. I've still coughing up pure blood every time I cough which is every couple of minutes. I stopped the Pulmozyme & am not going to do my inhaled Aztreonam tonight, in case that irrates my lungs more.

Funny thing is, I feel fine. I was actually feeling better than I have in a long time. I hemoptysize a lot, so I know when to call the doctor. I hope it calms down because I don't want to spend the night in the er.

Thanks for listening,
Take care,
Michelle
33 wcf

 

[mich]

Hello, from the new girl.

I started my Pulmozyme a little while ago and after less than a minute, I coughed and thought to myself that I coughed up a nice thick plug. So I got a tissue & there was the blood clot. I've still coughing up pure blood every time I cough which is every couple of minutes. I stopped the Pulmozyme & am not going to do my inhaled Aztreonam tonight, in case that irrates my lungs more.

Funny thing is, I feel fine. I was actually feeling better than I have in a long time. I hemoptysize a lot, so I know when to call the doctor. I hope it calms down because I don't want to spend the night in the er.

Thanks for listening,
Take care,
Michelle
33 wcf

 

[mich]

Hello, from the new girl.

I started my Pulmozyme a little while ago and after less than a minute, I coughed and thought to myself that I coughed up a nice thick plug. So I got a tissue & there was the blood clot. I've still coughing up pure blood every time I cough which is every couple of minutes. I stopped the Pulmozyme & am not going to do my inhaled Aztreonam tonight, in case that irrates my lungs more.

Funny thing is, I feel fine. I was actually feeling better than I have in a long time. I hemoptysize a lot, so I know when to call the doctor. I hope it calms down because I don't want to spend the night in the er.

Thanks for listening,
Take care,
Michelle
33 wcf

 

[mich]

Hello, from the new girl.
<br />
<br />I started my Pulmozyme a little while ago and after less than a minute, I coughed and thought to myself that I coughed up a nice thick plug. So I got a tissue & there was the blood clot. I've still coughing up pure blood every time I cough which is every couple of minutes. I stopped the Pulmozyme & am not going to do my inhaled Aztreonam tonight, in case that irrates my lungs more.
<br />
<br />Funny thing is, I feel fine. I was actually feeling better than I have in a long time. I hemoptysize a lot, so I know when to call the doctor. I hope it calms down because I don't want to spend the night in the er.
<br />
<br />Thanks for listening,
<br />Take care,
<br />Michelle
<br />33 wcf

 

[moxie1]

Hi Michelle,

Have you ruled out Pulmozyme as a cause to your hemoptysis? I know different things can cause bleeding, but for me it was definitely Pulmozyme. I had to have three emoblizations because I was bleeding so much.

I stopped Pulmozyme and the bleeding stopped too. However, my pfts went down without the Pulmozyme. So....now instead of doing Pulmozyme twice a day, I do it once every three days. It is enough for me to stay clear but not have hemoptysis. My last big bleed will be two years ago come November. I can't say how much a relief it is not to be dealing with it.

There are other options you can explore if the Pulmozyme doesn't turn out to be the cause. Do you take Vitamin K? That will help with any clotting issues. Others have had success using L-Lysine. I take that too. I only take 500mg a day, but some here do over a gram a day.

Good luck and let me know if you have any questions.

Becki
32 year old with cf

 

[moxie1]

Hi Michelle,

Have you ruled out Pulmozyme as a cause to your hemoptysis? I know different things can cause bleeding, but for me it was definitely Pulmozyme. I had to have three emoblizations because I was bleeding so much.

I stopped Pulmozyme and the bleeding stopped too. However, my pfts went down without the Pulmozyme. So....now instead of doing Pulmozyme twice a day, I do it once every three days. It is enough for me to stay clear but not have hemoptysis. My last big bleed will be two years ago come November. I can't say how much a relief it is not to be dealing with it.

There are other options you can explore if the Pulmozyme doesn't turn out to be the cause. Do you take Vitamin K? That will help with any clotting issues. Others have had success using L-Lysine. I take that too. I only take 500mg a day, but some here do over a gram a day.

Good luck and let me know if you have any questions.

Becki
32 year old with cf

 

[moxie1]

Hi Michelle,

Have you ruled out Pulmozyme as a cause to your hemoptysis? I know different things can cause bleeding, but for me it was definitely Pulmozyme. I had to have three emoblizations because I was bleeding so much.

I stopped Pulmozyme and the bleeding stopped too. However, my pfts went down without the Pulmozyme. So....now instead of doing Pulmozyme twice a day, I do it once every three days. It is enough for me to stay clear but not have hemoptysis. My last big bleed will be two years ago come November. I can't say how much a relief it is not to be dealing with it.

There are other options you can explore if the Pulmozyme doesn't turn out to be the cause. Do you take Vitamin K? That will help with any clotting issues. Others have had success using L-Lysine. I take that too. I only take 500mg a day, but some here do over a gram a day.

Good luck and let me know if you have any questions.

Becki
32 year old with cf

 

[moxie1]

Hi Michelle,

Have you ruled out Pulmozyme as a cause to your hemoptysis? I know different things can cause bleeding, but for me it was definitely Pulmozyme. I had to have three emoblizations because I was bleeding so much.

I stopped Pulmozyme and the bleeding stopped too. However, my pfts went down without the Pulmozyme. So....now instead of doing Pulmozyme twice a day, I do it once every three days. It is enough for me to stay clear but not have hemoptysis. My last big bleed will be two years ago come November. I can't say how much a relief it is not to be dealing with it.

There are other options you can explore if the Pulmozyme doesn't turn out to be the cause. Do you take Vitamin K? That will help with any clotting issues. Others have had success using L-Lysine. I take that too. I only take 500mg a day, but some here do over a gram a day.

Good luck and let me know if you have any questions.

Becki
32 year old with cf

 

[moxie1]

Hi Michelle,
<br />
<br />Have you ruled out Pulmozyme as a cause to your hemoptysis? I know different things can cause bleeding, but for me it was definitely Pulmozyme. I had to have three emoblizations because I was bleeding so much.
<br />
<br />I stopped Pulmozyme and the bleeding stopped too. However, my pfts went down without the Pulmozyme. So....now instead of doing Pulmozyme twice a day, I do it once every three days. It is enough for me to stay clear but not have hemoptysis. My last big bleed will be two years ago come November. I can't say how much a relief it is not to be dealing with it.
<br />
<br />There are other options you can explore if the Pulmozyme doesn't turn out to be the cause. Do you take Vitamin K? That will help with any clotting issues. Others have had success using L-Lysine. I take that too. I only take 500mg a day, but some here do over a gram a day.
<br />
<br />Good luck and let me know if you have any questions.
<br />
<br />Becki
<br />32 year old with cf

 

[mich]

Hi Becki,

I have been coughing up blood since I was 19. I don't think it's related to the Pulmozyme, but I can talk to my doctor about it. I do cough up blood almost weekly & do Pulmozyme once a day. Whenever I tried to do Pulmozyme 2x day, I always ended up coughing up blood. Pulmozyme really helps me though. I notice if I skip a day, my mucus is so much thicker. I try not to skip treatments, but every once in a while, it happens.

I take Vitamin K 3 times a week. I have been for years. When you mention L-Lysine, is that the study medication for inhaled Aztreonam? If so, I'm not eligible, but plan on taking it when it is FDA approved. Right now I'm taking 1 gram of inhaled Aztreonam 2xday for 28 days.

Thanks for all your advice. I appreciate it.
Take care,
Michelle
33 wcf

PS I've never need embolizations for my bleeds. Are they scary or painful?

 

[mich]

Hi Becki,

I have been coughing up blood since I was 19. I don't think it's related to the Pulmozyme, but I can talk to my doctor about it. I do cough up blood almost weekly & do Pulmozyme once a day. Whenever I tried to do Pulmozyme 2x day, I always ended up coughing up blood. Pulmozyme really helps me though. I notice if I skip a day, my mucus is so much thicker. I try not to skip treatments, but every once in a while, it happens.

I take Vitamin K 3 times a week. I have been for years. When you mention L-Lysine, is that the study medication for inhaled Aztreonam? If so, I'm not eligible, but plan on taking it when it is FDA approved. Right now I'm taking 1 gram of inhaled Aztreonam 2xday for 28 days.

Thanks for all your advice. I appreciate it.
Take care,
Michelle
33 wcf

PS I've never need embolizations for my bleeds. Are they scary or painful?

 

[mich]

Hi Becki,

I have been coughing up blood since I was 19. I don't think it's related to the Pulmozyme, but I can talk to my doctor about it. I do cough up blood almost weekly & do Pulmozyme once a day. Whenever I tried to do Pulmozyme 2x day, I always ended up coughing up blood. Pulmozyme really helps me though. I notice if I skip a day, my mucus is so much thicker. I try not to skip treatments, but every once in a while, it happens.

I take Vitamin K 3 times a week. I have been for years. When you mention L-Lysine, is that the study medication for inhaled Aztreonam? If so, I'm not eligible, but plan on taking it when it is FDA approved. Right now I'm taking 1 gram of inhaled Aztreonam 2xday for 28 days.

Thanks for all your advice. I appreciate it.
Take care,
Michelle
33 wcf

PS I've never need embolizations for my bleeds. Are they scary or painful?

 

[mich]

Hi Becki,

I have been coughing up blood since I was 19. I don't think it's related to the Pulmozyme, but I can talk to my doctor about it. I do cough up blood almost weekly & do Pulmozyme once a day. Whenever I tried to do Pulmozyme 2x day, I always ended up coughing up blood. Pulmozyme really helps me though. I notice if I skip a day, my mucus is so much thicker. I try not to skip treatments, but every once in a while, it happens.

I take Vitamin K 3 times a week. I have been for years. When you mention L-Lysine, is that the study medication for inhaled Aztreonam? If so, I'm not eligible, but plan on taking it when it is FDA approved. Right now I'm taking 1 gram of inhaled Aztreonam 2xday for 28 days.

Thanks for all your advice. I appreciate it.
Take care,
Michelle
33 wcf

PS I've never need embolizations for my bleeds. Are they scary or painful?

 

[mich]

Hi Becki,
<br />
<br />I have been coughing up blood since I was 19. I don't think it's related to the Pulmozyme, but I can talk to my doctor about it. I do cough up blood almost weekly & do Pulmozyme once a day. Whenever I tried to do Pulmozyme 2x day, I always ended up coughing up blood. Pulmozyme really helps me though. I notice if I skip a day, my mucus is so much thicker. I try not to skip treatments, but every once in a while, it happens.
<br />
<br />I take Vitamin K 3 times a week. I have been for years. When you mention L-Lysine, is that the study medication for inhaled Aztreonam? If so, I'm not eligible, but plan on taking it when it is FDA approved. Right now I'm taking 1 gram of inhaled Aztreonam 2xday for 28 days.
<br />
<br />Thanks for all your advice. I appreciate it.
<br />Take care,
<br />Michelle
<br />33 wcf
<br />
<br />PS I've never need embolizations for my bleeds. Are they scary or painful?

 

[JazzysMom]

Everyone is so different! For me I also usually feel better after a bleed. Its odd, but its like when the clot moves & the blood comes it seems to clear a certain area that doesnt get cleared often.

I also dont call the doctor each time. I have my times of non stop problems & then other times of no issues. I havent done my pulmozyme since I had a bleed during my last admission in January.

I am afraid to start it again.

I do take Vitamin K daily. 10 mg twice daily. Doctor said if I remain blood free that she will reduce it back down to my usual 5 mg twice daily.

I hope things calm down for you soon.

 

[JazzysMom]

Everyone is so different! For me I also usually feel better after a bleed. Its odd, but its like when the clot moves & the blood comes it seems to clear a certain area that doesnt get cleared often.

I also dont call the doctor each time. I have my times of non stop problems & then other times of no issues. I havent done my pulmozyme since I had a bleed during my last admission in January.

I am afraid to start it again.

I do take Vitamin K daily. 10 mg twice daily. Doctor said if I remain blood free that she will reduce it back down to my usual 5 mg twice daily.

I hope things calm down for you soon.

 

[JazzysMom]

Everyone is so different! For me I also usually feel better after a bleed. Its odd, but its like when the clot moves & the blood comes it seems to clear a certain area that doesnt get cleared often.

I also dont call the doctor each time. I have my times of non stop problems & then other times of no issues. I havent done my pulmozyme since I had a bleed during my last admission in January.

I am afraid to start it again.

I do take Vitamin K daily. 10 mg twice daily. Doctor said if I remain blood free that she will reduce it back down to my usual 5 mg twice daily.

I hope things calm down for you soon.

 

[JazzysMom]

Everyone is so different! For me I also usually feel better after a bleed. Its odd, but its like when the clot moves & the blood comes it seems to clear a certain area that doesnt get cleared often.

I also dont call the doctor each time. I have my times of non stop problems & then other times of no issues. I havent done my pulmozyme since I had a bleed during my last admission in January.

I am afraid to start it again.

I do take Vitamin K daily. 10 mg twice daily. Doctor said if I remain blood free that she will reduce it back down to my usual 5 mg twice daily.

I hope things calm down for you soon.

 

[JazzysMom]

Everyone is so different! For me I also usually feel better after a bleed. Its odd, but its like when the clot moves & the blood comes it seems to clear a certain area that doesnt get cleared often.
<br />
<br />I also dont call the doctor each time. I have my times of non stop problems & then other times of no issues. I havent done my pulmozyme since I had a bleed during my last admission in January.
<br />
<br />I am afraid to start it again.
<br />
<br />I do take Vitamin K daily. 10 mg twice daily. Doctor said if I remain blood free that she will reduce it back down to my usual 5 mg twice daily.
<br />
<br />I hope things calm down for you soon.