Last weekend's bleeding led to first embolization. Have some questions...

[LiveOutLoud]

HEY everyone! Thanks again for responding last weekend when i coughed up blood and what to do. After 3 episodes of coughing up blood in 24 hours, my husband and I went on to the hospital to meet my cf dr. Due to the amount, Interventional Radiology was called in and an embolization was setup for that day. The IR team clotted off two pulmonary arteries on my right lung. I can now empathize with so many of you on how stinkin scary that was! That was last monday, I am home today and have another week of home iv's. I have a few questions looking back at causes and a few questions about how my body feels now. So, those of you that have had embolization...please speak up! ;-)

I felt great prior to the bleeding. No problems at all...FEV1 110. It happened just after I lay down to bed. I've read how many of you say that the pressure of laying down can cause this. Of course, I've been reading the ultimate cause is inflammation in the lungs but want to do anything i can to prevent this mess again if possible. I take vitamin K each day. I was also just coming off my period (TMI... i know) AND had a crazy rare bleed a week prior to my period (down there) that was unexplainable. I've also been off my birth control since August. Any correlations on what happened to you? CF team offer any advice to you? My followup is not until next week ;-(

Also, since the embolization I'm on orders of rest for recovery. Not working, just reading, eating, sleeping. The most exercise i get is going to kitchen to bedroom to bathroom hahaha! Ever since I have woken up from procedure there is this pressure in my right lung. It's sometimes less than other times, but always there. Almost like there's an inflated balloon in my lung. Also, when I do go upstairs or do something semi-normal, i get a headache and a huge throbbing pain in my neck on the right side. During this time, that balloon-like feeling inflates in the right lung and cause a pain-like pressure. Anyone experience any of these symptoms post-procedure? What other symptoms have you experieced?

Thanks, Randi

 

[LiveOutLoud]

HEY everyone! Thanks again for responding last weekend when i coughed up blood and what to do. After 3 episodes of coughing up blood in 24 hours, my husband and I went on to the hospital to meet my cf dr. Due to the amount, Interventional Radiology was called in and an embolization was setup for that day. The IR team clotted off two pulmonary arteries on my right lung. I can now empathize with so many of you on how stinkin scary that was! That was last monday, I am home today and have another week of home iv's. I have a few questions looking back at causes and a few questions about how my body feels now. So, those of you that have had embolization...please speak up! ;-)

I felt great prior to the bleeding. No problems at all...FEV1 110. It happened just after I lay down to bed. I've read how many of you say that the pressure of laying down can cause this. Of course, I've been reading the ultimate cause is inflammation in the lungs but want to do anything i can to prevent this mess again if possible. I take vitamin K each day. I was also just coming off my period (TMI... i know) AND had a crazy rare bleed a week prior to my period (down there) that was unexplainable. I've also been off my birth control since August. Any correlations on what happened to you? CF team offer any advice to you? My followup is not until next week ;-(

Also, since the embolization I'm on orders of rest for recovery. Not working, just reading, eating, sleeping. The most exercise i get is going to kitchen to bedroom to bathroom hahaha! Ever since I have woken up from procedure there is this pressure in my right lung. It's sometimes less than other times, but always there. Almost like there's an inflated balloon in my lung. Also, when I do go upstairs or do something semi-normal, i get a headache and a huge throbbing pain in my neck on the right side. During this time, that balloon-like feeling inflates in the right lung and cause a pain-like pressure. Anyone experience any of these symptoms post-procedure? What other symptoms have you experieced?

Thanks, Randi

 

[LiveOutLoud]

HEY everyone! Thanks again for responding last weekend when i coughed up blood and what to do. After 3 episodes of coughing up blood in 24 hours, my husband and I went on to the hospital to meet my cf dr. Due to the amount, Interventional Radiology was called in and an embolization was setup for that day. The IR team clotted off two pulmonary arteries on my right lung. I can now empathize with so many of you on how stinkin scary that was! That was last monday, I am home today and have another week of home iv's. I have a few questions looking back at causes and a few questions about how my body feels now. So, those of you that have had embolization...please speak up! ;-)
<br />
<br />I felt great prior to the bleeding. No problems at all...FEV1 110. It happened just after I lay down to bed. I've read how many of you say that the pressure of laying down can cause this. Of course, I've been reading the ultimate cause is inflammation in the lungs but want to do anything i can to prevent this mess again if possible. I take vitamin K each day. I was also just coming off my period (TMI... i know) AND had a crazy rare bleed a week prior to my period (down there) that was unexplainable. I've also been off my birth control since August. Any correlations on what happened to you? CF team offer any advice to you? My followup is not until next week ;-(
<br />
<br />Also, since the embolization I'm on orders of rest for recovery. Not working, just reading, eating, sleeping. The most exercise i get is going to kitchen to bedroom to bathroom hahaha! Ever since I have woken up from procedure there is this pressure in my right lung. It's sometimes less than other times, but always there. Almost like there's an inflated balloon in my lung. Also, when I do go upstairs or do something semi-normal, i get a headache and a huge throbbing pain in my neck on the right side. During this time, that balloon-like feeling inflates in the right lung and cause a pain-like pressure. Anyone experience any of these symptoms post-procedure? What other symptoms have you experieced?
<br />
<br />Thanks, Randi

 

[LouLou]

I had pressure and pain at the site of the embolization for at least 5-7 days. Hopefully this will stop your bleeding! Before my embolization (also rt upper lobe and two bronchial arteries) I bleed daily. Now I only bleed when I am starting to exacerbate.

 

[LouLou]

I had pressure and pain at the site of the embolization for at least 5-7 days. Hopefully this will stop your bleeding! Before my embolization (also rt upper lobe and two bronchial arteries) I bleed daily. Now I only bleed when I am starting to exacerbate.

 

[LouLou]

I had pressure and pain at the site of the embolization for at least 5-7 days. Hopefully this will stop your bleeding! Before my embolization (also rt upper lobe and two bronchial arteries) I bleed daily. Now I only bleed when I am starting to exacerbate.

 

[LouLou]

Oh and in case no one told you it's normal to loose a point or two in your O2 sats. 2 years later mine finally seem to be back to baseline of 98-99. Additionally, I do not seem to be able to tolerate Pulmozyme anymore. Within 24 hrs of doing it I always have at least streaking...makes me wonder if the bleedigng before embolization could have largely been controlled by going off Pulmozyme.

The headache thing makes me a little worried. Have you reported it? Not sure if there's a risk of stroke or seizures from these things like there is paralysis but best to chk with them.

 

[LouLou]

Oh and in case no one told you it's normal to loose a point or two in your O2 sats. 2 years later mine finally seem to be back to baseline of 98-99. Additionally, I do not seem to be able to tolerate Pulmozyme anymore. Within 24 hrs of doing it I always have at least streaking...makes me wonder if the bleedigng before embolization could have largely been controlled by going off Pulmozyme.

The headache thing makes me a little worried. Have you reported it? Not sure if there's a risk of stroke or seizures from these things like there is paralysis but best to chk with them.

 

[LouLou]

Oh and in case no one told you it's normal to loose a point or two in your O2 sats. 2 years later mine finally seem to be back to baseline of 98-99. Additionally, I do not seem to be able to tolerate Pulmozyme anymore. Within 24 hrs of doing it I always have at least streaking...makes me wonder if the bleedigng before embolization could have largely been controlled by going off Pulmozyme.
<br />
<br />The headache thing makes me a little worried. Have you reported it? Not sure if there's a risk of stroke or seizures from these things like there is paralysis but best to chk with them.

 

[Mallymookcf]

One of my main issues with my C.f. is coughing up blood...so i can totally relate to what has been going on with you. It is sooo scary to have blood coming from such a critical place in your body. My first embolization story not so good, but the second time went well. My first embolization, the doc put too many of the silicone pellets in one of the vessels and it caused it to kill the tissue in a 2 to 3 inch area. So for 2 months i suffered from terrible pleuracy of the lung. made many trips to ER in pain. after the pain finally subsided, i went 8 months with no more bleeding until it happened again. Years later i had it done again due to frequent episodes back to back. The embolization went as planned but it didnt stop the bleeding, by that evening i had done it again (i need to mention they were unable to detect the exact vessels to embolize either time..so they prob. missed some in my case). I cough up blood always in relation with my menstural bleeding. i am being treated by an obgyn doc that my c.f doc referred me to. he is having me take progesterone to stop all my periods...i have had no lung bleeding except for when i had a small break through menstural bleed ..immmediately followed with coughing up blood. (see its ALWAYS related) but so far so good on this treatment of stopping periods (so there is no hormone/estrogen drops) My advice would be to keep a journal and keep up with when during your month (cycle) that you have the coughing up blood! Good luck! I pray that you dont have any more bleeding now that you have had the embolization done!! Thats the goal!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
God Bless
Mallory

 

[Mallymookcf]

One of my main issues with my C.f. is coughing up blood...so i can totally relate to what has been going on with you. It is sooo scary to have blood coming from such a critical place in your body. My first embolization story not so good, but the second time went well. My first embolization, the doc put too many of the silicone pellets in one of the vessels and it caused it to kill the tissue in a 2 to 3 inch area. So for 2 months i suffered from terrible pleuracy of the lung. made many trips to ER in pain. after the pain finally subsided, i went 8 months with no more bleeding until it happened again. Years later i had it done again due to frequent episodes back to back. The embolization went as planned but it didnt stop the bleeding, by that evening i had done it again (i need to mention they were unable to detect the exact vessels to embolize either time..so they prob. missed some in my case). I cough up blood always in relation with my menstural bleeding. i am being treated by an obgyn doc that my c.f doc referred me to. he is having me take progesterone to stop all my periods...i have had no lung bleeding except for when i had a small break through menstural bleed ..immmediately followed with coughing up blood. (see its ALWAYS related) but so far so good on this treatment of stopping periods (so there is no hormone/estrogen drops) My advice would be to keep a journal and keep up with when during your month (cycle) that you have the coughing up blood! Good luck! I pray that you dont have any more bleeding now that you have had the embolization done!! Thats the goal!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
God Bless
Mallory

 

[Mallymookcf]

One of my main issues with my C.f. is coughing up blood...so i can totally relate to what has been going on with you. It is sooo scary to have blood coming from such a critical place in your body. My first embolization story not so good, but the second time went well. My first embolization, the doc put too many of the silicone pellets in one of the vessels and it caused it to kill the tissue in a 2 to 3 inch area. So for 2 months i suffered from terrible pleuracy of the lung. made many trips to ER in pain. after the pain finally subsided, i went 8 months with no more bleeding until it happened again. Years later i had it done again due to frequent episodes back to back. The embolization went as planned but it didnt stop the bleeding, by that evening i had done it again (i need to mention they were unable to detect the exact vessels to embolize either time..so they prob. missed some in my case). I cough up blood always in relation with my menstural bleeding. i am being treated by an obgyn doc that my c.f doc referred me to. he is having me take progesterone to stop all my periods...i have had no lung bleeding except for when i had a small break through menstural bleed ..immmediately followed with coughing up blood. (see its ALWAYS related) but so far so good on this treatment of stopping periods (so there is no hormone/estrogen drops) My advice would be to keep a journal and keep up with when during your month (cycle) that you have the coughing up blood! Good luck! I pray that you dont have any more bleeding now that you have had the embolization done!! Thats the goal!! <img src="i/expressions/face-icon-small-smile.gif" border="0">
<br />God Bless
<br />Mallory

 

[LiveOutLoud]

Thank you so much for the replies. The pain in neck is beginning to occur less and less. EAch day I feel better and lungs feel looser..hope that's the case and I'm not just getting used to it. lol! MOLLY: I was soo concerned too about them finding the right vessel since I wasn't bleeding at the time of embolization. They shot contrast and just worked on the two that were 'enlarged'. Crazy though that it totally felt like it was occurring in my left side and they worked in the right side...said the left side looked fine. I will totally keep a journal but hope I don't have too! Interesting to learn about your progesterone meds...

Thank you both for replying! Hope all is well with both of you!

Randi

 

[LiveOutLoud]

Thank you so much for the replies. The pain in neck is beginning to occur less and less. EAch day I feel better and lungs feel looser..hope that's the case and I'm not just getting used to it. lol! MOLLY: I was soo concerned too about them finding the right vessel since I wasn't bleeding at the time of embolization. They shot contrast and just worked on the two that were 'enlarged'. Crazy though that it totally felt like it was occurring in my left side and they worked in the right side...said the left side looked fine. I will totally keep a journal but hope I don't have too! Interesting to learn about your progesterone meds...

Thank you both for replying! Hope all is well with both of you!

Randi

 

[LiveOutLoud]

Thank you so much for the replies. The pain in neck is beginning to occur less and less. EAch day I feel better and lungs feel looser..hope that's the case and I'm not just getting used to it. lol! MOLLY: I was soo concerned too about them finding the right vessel since I wasn't bleeding at the time of embolization. They shot contrast and just worked on the two that were 'enlarged'. Crazy though that it totally felt like it was occurring in my left side and they worked in the right side...said the left side looked fine. I will totally keep a journal but hope I don't have too! Interesting to learn about your progesterone meds...
<br />
<br />Thank you both for replying! Hope all is well with both of you!
<br />
<br />Randi

 

[moxie1]

Hi,

I've had three emoblizations.....the first lessened the bleeding but it came back and embolizations two and three didn't do a thing for me.

My bleeding stopped when I stopped my Pulmozyme. I had to restart it again because I lost too much lung function, but I now do it once every 3 days. My lung function has returned and it seems to be at a level that keeps bleeding away.

I went for 3 years without bleeds. Now I am starting to have one streak a month....at the same time as my period. It is literally one thread of blood in one cough. So weird.

Anyway, as far as the emoblizations went, I didn't have any discomfort or side effects afterwards.

Hope that helps. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[moxie1]

Hi,

I've had three emoblizations.....the first lessened the bleeding but it came back and embolizations two and three didn't do a thing for me.

My bleeding stopped when I stopped my Pulmozyme. I had to restart it again because I lost too much lung function, but I now do it once every 3 days. My lung function has returned and it seems to be at a level that keeps bleeding away.

I went for 3 years without bleeds. Now I am starting to have one streak a month....at the same time as my period. It is literally one thread of blood in one cough. So weird.

Anyway, as far as the emoblizations went, I didn't have any discomfort or side effects afterwards.

Hope that helps. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[moxie1]

Hi,
<br />
<br />I've had three emoblizations.....the first lessened the bleeding but it came back and embolizations two and three didn't do a thing for me.
<br />
<br />My bleeding stopped when I stopped my Pulmozyme. I had to restart it again because I lost too much lung function, but I now do it once every 3 days. My lung function has returned and it seems to be at a level that keeps bleeding away.
<br />
<br />I went for 3 years without bleeds. Now I am starting to have one streak a month....at the same time as my period. It is literally one thread of blood in one cough. So weird.
<br />
<br />Anyway, as far as the emoblizations went, I didn't have any discomfort or side effects afterwards.
<br />
<br />Hope that helps. <img src="i/expressions/face-icon-small-smile.gif" border="0">