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BreetheFree1
Guest
Glad you all join in on the conversation...
saveferris2009 - You are welcome. Another article? Who wrote it and can you post the link, here? I like "Be proactive, not reactive, about your health"
Moxie1 - Glad to hear that there was some noise out there about Tranexamic Acid. I spoke to the author of the article at one point and he said he moved from the university that the study was done and never picked it back up so without the researcher behind the study it's up to the MD, I guess.... as far as my CPT, I don't use the vest, my CPT is manual and I am working on a video instruction to upload to youtube in the next month or so. Basically it intense and loud (you can hear it down the hallway) manual percussion for 3 minutes on 11 positions, mixed with huff breathing with heavy pressure with G5 hospital quality vibrator. I receive it twice daily via Respiratory Therapist (RT). I will get more into the how in the video, the segment, and what my G5 machine is... So until then. Moxie I like when you said, your lung know when it's time... this turning into our body is the key... glad to hear you are listening.
Gotu Kola Again...My sister is one who never skips her Gotu Kola and just about any treatment she has an after her bad 16 oz bleed she never had another bleed and was able to go back on Pulmozyme and any and all treatments.
LouLou - Hope you don't need it and ain't it good to have as many safety nets as possible... especially when you don't need them...I am more of a streaker and if I don't take care of it in the bud. I will bleed about 5 mouthfuls. So ya I can scare the crap out of myself when it happen. And I get that I was totally check out of my body... aka not tuning into what it was saying. Yoga helps with tuning in for me.
I forgot to mention that only check this forum about once a week. And yes my user name changed because I could not reset the passcode, I tried 5 times.
saveferris2009 - You are welcome. Another article? Who wrote it and can you post the link, here? I like "Be proactive, not reactive, about your health"
Moxie1 - Glad to hear that there was some noise out there about Tranexamic Acid. I spoke to the author of the article at one point and he said he moved from the university that the study was done and never picked it back up so without the researcher behind the study it's up to the MD, I guess.... as far as my CPT, I don't use the vest, my CPT is manual and I am working on a video instruction to upload to youtube in the next month or so. Basically it intense and loud (you can hear it down the hallway) manual percussion for 3 minutes on 11 positions, mixed with huff breathing with heavy pressure with G5 hospital quality vibrator. I receive it twice daily via Respiratory Therapist (RT). I will get more into the how in the video, the segment, and what my G5 machine is... So until then. Moxie I like when you said, your lung know when it's time... this turning into our body is the key... glad to hear you are listening.
Gotu Kola Again...My sister is one who never skips her Gotu Kola and just about any treatment she has an after her bad 16 oz bleed she never had another bleed and was able to go back on Pulmozyme and any and all treatments.
LouLou - Hope you don't need it and ain't it good to have as many safety nets as possible... especially when you don't need them...I am more of a streaker and if I don't take care of it in the bud. I will bleed about 5 mouthfuls. So ya I can scare the crap out of myself when it happen. And I get that I was totally check out of my body... aka not tuning into what it was saying. Yoga helps with tuning in for me.
I forgot to mention that only check this forum about once a week. And yes my user name changed because I could not reset the passcode, I tried 5 times.
B
BreetheFree1
Guest
Glad you all join in on the conversation...
saveferris2009 - You are welcome. Another article? Who wrote it and can you post the link, here? I like "Be proactive, not reactive, about your health"
Moxie1 - Glad to hear that there was some noise out there about Tranexamic Acid. I spoke to the author of the article at one point and he said he moved from the university that the study was done and never picked it back up so without the researcher behind the study it's up to the MD, I guess.... as far as my CPT, I don't use the vest, my CPT is manual and I am working on a video instruction to upload to youtube in the next month or so. Basically it intense and loud (you can hear it down the hallway) manual percussion for 3 minutes on 11 positions, mixed with huff breathing with heavy pressure with G5 hospital quality vibrator. I receive it twice daily via Respiratory Therapist (RT). I will get more into the how in the video, the segment, and what my G5 machine is... So until then. Moxie I like when you said, your lung know when it's time... this turning into our body is the key... glad to hear you are listening.
Gotu Kola Again...My sister is one who never skips her Gotu Kola and just about any treatment she has an after her bad 16 oz bleed she never had another bleed and was able to go back on Pulmozyme and any and all treatments.
LouLou - Hope you don't need it and ain't it good to have as many safety nets as possible... especially when you don't need them...I am more of a streaker and if I don't take care of it in the bud. I will bleed about 5 mouthfuls. So ya I can scare the crap out of myself when it happen. And I get that I was totally check out of my body... aka not tuning into what it was saying. Yoga helps with tuning in for me.
I forgot to mention that only check this forum about once a week. And yes my user name changed because I could not reset the passcode, I tried 5 times.
saveferris2009 - You are welcome. Another article? Who wrote it and can you post the link, here? I like "Be proactive, not reactive, about your health"
Moxie1 - Glad to hear that there was some noise out there about Tranexamic Acid. I spoke to the author of the article at one point and he said he moved from the university that the study was done and never picked it back up so without the researcher behind the study it's up to the MD, I guess.... as far as my CPT, I don't use the vest, my CPT is manual and I am working on a video instruction to upload to youtube in the next month or so. Basically it intense and loud (you can hear it down the hallway) manual percussion for 3 minutes on 11 positions, mixed with huff breathing with heavy pressure with G5 hospital quality vibrator. I receive it twice daily via Respiratory Therapist (RT). I will get more into the how in the video, the segment, and what my G5 machine is... So until then. Moxie I like when you said, your lung know when it's time... this turning into our body is the key... glad to hear you are listening.
Gotu Kola Again...My sister is one who never skips her Gotu Kola and just about any treatment she has an after her bad 16 oz bleed she never had another bleed and was able to go back on Pulmozyme and any and all treatments.
LouLou - Hope you don't need it and ain't it good to have as many safety nets as possible... especially when you don't need them...I am more of a streaker and if I don't take care of it in the bud. I will bleed about 5 mouthfuls. So ya I can scare the crap out of myself when it happen. And I get that I was totally check out of my body... aka not tuning into what it was saying. Yoga helps with tuning in for me.
I forgot to mention that only check this forum about once a week. And yes my user name changed because I could not reset the passcode, I tried 5 times.
B
BreetheFree1
Guest
Glad you all join in on the conversation...
<br />
<br />saveferris2009 - You are welcome. Another article? Who wrote it and can you post the link, here? I like "Be proactive, not reactive, about your health"
<br />
<br />Moxie1 - Glad to hear that there was some noise out there about Tranexamic Acid. I spoke to the author of the article at one point and he said he moved from the university that the study was done and never picked it back up so without the researcher behind the study it's up to the MD, I guess.... as far as my CPT, I don't use the vest, my CPT is manual and I am working on a video instruction to upload to youtube in the next month or so. Basically it intense and loud (you can hear it down the hallway) manual percussion for 3 minutes on 11 positions, mixed with huff breathing with heavy pressure with G5 hospital quality vibrator. I receive it twice daily via Respiratory Therapist (RT). I will get more into the how in the video, the segment, and what my G5 machine is... So until then. Moxie I like when you said, your lung know when it's time... this turning into our body is the key... glad to hear you are listening.
<br />
<br />Gotu Kola Again...My sister is one who never skips her Gotu Kola and just about any treatment she has an after her bad 16 oz bleed she never had another bleed and was able to go back on Pulmozyme and any and all treatments.
<br />
<br />LouLou - Hope you don't need it and ain't it good to have as many safety nets as possible... especially when you don't need them...I am more of a streaker and if I don't take care of it in the bud. I will bleed about 5 mouthfuls. So ya I can scare the crap out of myself when it happen. And I get that I was totally check out of my body... aka not tuning into what it was saying. Yoga helps with tuning in for me.
<br />
<br />I forgot to mention that only check this forum about once a week. And yes my user name changed because I could not reset the passcode, I tried 5 times.
<br />
<br />saveferris2009 - You are welcome. Another article? Who wrote it and can you post the link, here? I like "Be proactive, not reactive, about your health"
<br />
<br />Moxie1 - Glad to hear that there was some noise out there about Tranexamic Acid. I spoke to the author of the article at one point and he said he moved from the university that the study was done and never picked it back up so without the researcher behind the study it's up to the MD, I guess.... as far as my CPT, I don't use the vest, my CPT is manual and I am working on a video instruction to upload to youtube in the next month or so. Basically it intense and loud (you can hear it down the hallway) manual percussion for 3 minutes on 11 positions, mixed with huff breathing with heavy pressure with G5 hospital quality vibrator. I receive it twice daily via Respiratory Therapist (RT). I will get more into the how in the video, the segment, and what my G5 machine is... So until then. Moxie I like when you said, your lung know when it's time... this turning into our body is the key... glad to hear you are listening.
<br />
<br />Gotu Kola Again...My sister is one who never skips her Gotu Kola and just about any treatment she has an after her bad 16 oz bleed she never had another bleed and was able to go back on Pulmozyme and any and all treatments.
<br />
<br />LouLou - Hope you don't need it and ain't it good to have as many safety nets as possible... especially when you don't need them...I am more of a streaker and if I don't take care of it in the bud. I will bleed about 5 mouthfuls. So ya I can scare the crap out of myself when it happen. And I get that I was totally check out of my body... aka not tuning into what it was saying. Yoga helps with tuning in for me.
<br />
<br />I forgot to mention that only check this forum about once a week. And yes my user name changed because I could not reset the passcode, I tried 5 times.
Mallymookcf
New member
<P>thank you soooo much for posting this information!!!! i suffer tremendously with hemoptysis..for over 10 years now! i have had 4 embolizations...and hundreds of massive hemoptysis episodes that all could have been embolized. i am apparently one of the worst bleeding cases my docs have seen. booo! i am being treated with progesterone as well...i would love to hear ur reasoning for being treated with it,as far as how it helps u. i took notes on all ur information to give to my docs this month when i have my appt. so ur doc writes you a script for this?? thank you again for ur post! this is just one more reason this site is so great! what a blessing!! God Bless!</P>
<P> </P>
<P>Mallory</P>
<P> </P>
<P>Mallory</P>
Mallymookcf
New member
<P>thank you soooo much for posting this information!!!! i suffer tremendously with hemoptysis..for over 10 years now! i have had 4 embolizations...and hundreds of massive hemoptysis episodes that all could have been embolized. i am apparently one of the worst bleeding cases my docs have seen. booo! i am being treated with progesterone as well...i would love to hear ur reasoning for being treated withit,as far as how it helps u. i took notes on all ur information to give to my docs this month when i have my appt. so ur doc writes you a script for this?? thank you again for ur post! this is just one more reason this site is so great! what a blessing!! God Bless!</P>
<P></P>
<P>Mallory</P>
<P></P>
<P>Mallory</P>
Mallymookcf
New member
<P><BR>thank you soooo much for posting this information!!!! i suffer tremendously with hemoptysis..for over 10 years now! i have had 4 embolizations...and hundreds of massive hemoptysis episodes that all could have been embolized. i am apparently one of the worst bleeding cases my docs have seen. booo! i am being treated with progesterone as well...i would love to hear ur reasoning for being treated withit,as far as how it helps u. i took notes on all ur information to give to my docs this month when i have my appt. so ur doc writes you a script for this?? thank you again for ur post! this is just one more reason this site is so great! what a blessing!! God Bless!</P>
<P></P>
<P>Mallory</P>
<P></P>
<P>Mallory</P>
M
moxie1
Guest
<P>Not trying to take over this thread, but just wanted to answer oneof65.</P>
<P> </P>
<P>I cut my dose of Pulmozyme because we figured out that it was causing the bleeding. I had 3 embolizations for bleeding. After the last one, I was still bleeding. I decided to stop the Pulmozyme and it stopped like a faucet being shut off. However, my pfts started to drop without the Pulmozyme. I figured out that taking it once every three days made my lungs happy without making me bleed.</P>
<P> </P>
<P> </P>
<P>I cut my dose of Pulmozyme because we figured out that it was causing the bleeding. I had 3 embolizations for bleeding. After the last one, I was still bleeding. I decided to stop the Pulmozyme and it stopped like a faucet being shut off. However, my pfts started to drop without the Pulmozyme. I figured out that taking it once every three days made my lungs happy without making me bleed.</P>
<P> </P>
M
moxie1
Guest
<P>Not trying to take over this thread, but just wanted to answer oneof65.</P>
<P></P>
<P>I cut my dose of Pulmozyme because we figured out that it was causing the bleeding. I had 3 embolizations for bleeding. After the last one, I was still bleeding. I decided to stop the Pulmozyme and it stopped like a faucet being shut off. However, my pfts started to drop without the Pulmozyme. I figured out that taking it once every three days made my lungs happy without making me bleed.</P>
<P></P>
<P></P>
<P>I cut my dose of Pulmozyme because we figured out that it was causing the bleeding. I had 3 embolizations for bleeding. After the last one, I was still bleeding. I decided to stop the Pulmozyme and it stopped like a faucet being shut off. However, my pfts started to drop without the Pulmozyme. I figured out that taking it once every three days made my lungs happy without making me bleed.</P>
<P></P>
M
moxie1
Guest
<P><BR>Not trying to take over this thread, but just wanted to answer oneof65.</P>
<P></P>
<P>I cut my dose of Pulmozyme because we figured out that it was causing the bleeding. I had 3 embolizations for bleeding. After the last one, I was still bleeding. I decided to stop the Pulmozyme and it stopped like a faucet being shut off. However, my pfts started to drop without the Pulmozyme. I figured out that taking it once every three days made my lungs happy without making me bleed.</P>
<P></P>
<P></P>
<P>I cut my dose of Pulmozyme because we figured out that it was causing the bleeding. I had 3 embolizations for bleeding. After the last one, I was still bleeding. I decided to stop the Pulmozyme and it stopped like a faucet being shut off. However, my pfts started to drop without the Pulmozyme. I figured out that taking it once every three days made my lungs happy without making me bleed.</P>
<P></P>
I understand moxie. I also have had three embols. Pulm is a hitter on the vessals but not as much as tobi does. I think your very fortunate that you can do pulmazyme every third day, not many cf people can do that. Although you are trading trading losing tissue with bleeds. It is interesting to hear other peoples routine.
I understand moxie. I also have had three embols. Pulm is a hitter on the vessals but not as much as tobi does. I think your very fortunate that you can do pulmazyme every third day, not many cf people can do that. Although you are trading trading losing tissue with bleeds. It is interesting to hear other peoples routine.
I understand moxie. I also have had three embols. Pulm is a hitter on the vessals but not as much as tobi does. I think your very fortunate that you can do pulmazyme every third day, not many cf people can do that. Although you are trading trading losing tissue with bleeds. It is interesting to hear other peoples routine.
B
BreetheFree
Guest
<strong>saveferris2009 - I found the article and I am in the midst of trying to purchase the article. I'll keep you posted... and see if I can get it. Here's the abstract <A HREF="http://journals.lww.com/bronchology/Abstract/2010/04000/Endobronchial_Administration_of_Tranexamic_Acid.6.aspx">http://journals.lww.com/bronchology/Abstract/2010/04000/Endobronchial_Administration_of_Tranexamic_Acid.6.aspx</A><br></strong><strong></strong><br>Mallymookcf - .You wrote, "i would love to hear ur reasoning for being treated with it,as far as
how it helps u." Stops the bleeding completely within 2 days...done end of story... need I say more. So ur doc writes you a script for this? Yes, after reading the above pdf article on Tranexamic Acid (TA) in Doctor, lingo... it covers him so he can write the script. <b style="mso-bidi-font-weight:
normal"><span style="color:blue"><span style="color:blue"><a href="%3CA%20HREF=" http:="" tinyurl.com="" cyclokapron"=""></a><A HREF="http://tinyurl.com/cyclokapron">http://tinyurl.com/cyclokapron</A></b>
how it helps u." Stops the bleeding completely within 2 days...done end of story... need I say more. So ur doc writes you a script for this? Yes, after reading the above pdf article on Tranexamic Acid (TA) in Doctor, lingo... it covers him so he can write the script. <b style="mso-bidi-font-weight:
normal"><span style="color:blue"><span style="color:blue"><a href="%3CA%20HREF=" http:="" tinyurl.com="" cyclokapron"=""></a><A HREF="http://tinyurl.com/cyclokapron">http://tinyurl.com/cyclokapron</A></b>
B
BreetheFree
Guest
<strong>saveferris2009 - I found the article and I am in the midst of trying to purchase the article. I'll keep you posted... and see if I can get it. Here's the abstract <A HREF="http://journals.lww.com/bronchology/Abstract/2010/04000/Endobronchial_Administration_of_Tranexamic_Acid.6.aspx">http://journals.lww.com/bronchology/Abstract/2010/04000/Endobronchial_Administration_of_Tranexamic_Acid.6.aspx</A><br></strong><strong></strong><br>Mallymookcf - .You wrote, "i would love to hear ur reasoning for being treated withit,as far as
how it helps u." Stops the bleeding completely within 2 days...done end of story... need I say more. So ur doc writes you a script for this? Yes, after reading the above pdf article on Tranexamic Acid (TA) in Doctor, lingo... it covers him so he can write the script.<b style="mso-bidi-font-weight:
normal"><span style="color:blue"><span style="color:blue"><a href="%3CA%20HREF=" http:="" tinyurl.com="" cyclokapron"=""></a><A HREF="http://tinyurl.com/cyclokapron">http://tinyurl.com/cyclokapron</A></b>
how it helps u." Stops the bleeding completely within 2 days...done end of story... need I say more. So ur doc writes you a script for this? Yes, after reading the above pdf article on Tranexamic Acid (TA) in Doctor, lingo... it covers him so he can write the script.<b style="mso-bidi-font-weight:
normal"><span style="color:blue"><span style="color:blue"><a href="%3CA%20HREF=" http:="" tinyurl.com="" cyclokapron"=""></a><A HREF="http://tinyurl.com/cyclokapron">http://tinyurl.com/cyclokapron</A></b>
B
BreetheFree
Guest
<strong>saveferris2009 - I found the article and I am in the midst of trying to purchase the article. I'll keep you posted... and see if I can get it. Here's the abstract <A HREF="http://journals.lww.com/bronchology/Abstract/2010/04000/Endobronchial_Administration_of_Tranexamic_Acid.6.aspx">http://journals.lww.com/bronchology/Abstract/2010/04000/Endobronchial_Administration_of_Tranexamic_Acid.6.aspx</A><br></strong><strong></strong><br>Mallymookcf - .You wrote, "i would love to hear ur reasoning for being treated withit,as far as
how it helps u." Stops the bleeding completely within 2 days...done end of story... need I say more. So ur doc writes you a script for this? Yes, after reading the above pdf article on Tranexamic Acid (TA) in Doctor, lingo... it covers him so he can write the script.<b style="mso-bidi-font-weight:
normal"><span style="color:blue"><span style="color:blue"><a href="%3CA%20HREF=" http:="" tinyurl.com="" cyclokapron"=""></a><A HREF="http://tinyurl.com/cyclokapron">http://tinyurl.com/cyclokapron</A></b>
how it helps u." Stops the bleeding completely within 2 days...done end of story... need I say more. So ur doc writes you a script for this? Yes, after reading the above pdf article on Tranexamic Acid (TA) in Doctor, lingo... it covers him so he can write the script.<b style="mso-bidi-font-weight:
normal"><span style="color:blue"><span style="color:blue"><a href="%3CA%20HREF=" http:="" tinyurl.com="" cyclokapron"=""></a><A HREF="http://tinyurl.com/cyclokapron">http://tinyurl.com/cyclokapron</A></b>
B
BreetheFree
Guest
I downloaded two updated articles on the subject... The article "Treatment Massive Haemoptysis (same as Hemoptysis, I believe) in Cystic Fibrosis with Tranexamic Acid (TA)" is more geared toward what I wanted which is to have the solution to the problem by administering TA orally. I hope that the author will not mind me posting the Conclusion of the article here... here it is.
Conclusion:
For patients with CF, haemoptysis is a frightening event that for many is associated with a period of decline in their lung function and clinical condition. There is also an excess mortality that accompanies such an event. Unfortunately, the evidence base informing clinicians of the optimal strategy to treat this complication of CF is poor and limited to a base of expert opinion that for the most part lacks consensus. Rigorous randomized trials are required to fill this evidence gap. From JRSM July 1, 2011 104:suppl_1 S49-S52
-saveferris2009 is this the article that you were speaking of or is there another one.
Conclusion:
For patients with CF, haemoptysis is a frightening event that for many is associated with a period of decline in their lung function and clinical condition. There is also an excess mortality that accompanies such an event. Unfortunately, the evidence base informing clinicians of the optimal strategy to treat this complication of CF is poor and limited to a base of expert opinion that for the most part lacks consensus. Rigorous randomized trials are required to fill this evidence gap. From JRSM July 1, 2011 104:suppl_1 S49-S52
-saveferris2009 is this the article that you were speaking of or is there another one.
B
BreetheFree
Guest
I downloaded two updated articles on the subject... The article "Treatment Massive Haemoptysis (same as Hemoptysis, I believe) in Cystic Fibrosis with Tranexamic Acid (TA)" is more geared toward what I wanted which is to have the solution to the problem by administering TA orally. I hope that the author will not mind me posting the Conclusion of the article here... here it is.
Conclusion:
For patients with CF, haemoptysis is a frightening event that for many is associated with a period of decline in their lung function and clinical condition. There is also an excess mortality that accompanies such an event. Unfortunately, the evidence base informing clinicians of the optimal strategy to treat this complication of CF is poor and limited to a base of expert opinion that for the most part lacks consensus. Rigorous randomized trials are required to fill this evidence gap. From JRSM July 1, 2011 104:suppl_1 S49-S52
-saveferris2009 is this the article that you were speaking of or is there another one.
Conclusion:
For patients with CF, haemoptysis is a frightening event that for many is associated with a period of decline in their lung function and clinical condition. There is also an excess mortality that accompanies such an event. Unfortunately, the evidence base informing clinicians of the optimal strategy to treat this complication of CF is poor and limited to a base of expert opinion that for the most part lacks consensus. Rigorous randomized trials are required to fill this evidence gap. From JRSM July 1, 2011 104:suppl_1 S49-S52
-saveferris2009 is this the article that you were speaking of or is there another one.
B
BreetheFree
Guest
I downloaded two updated articles on the subject... The article "Treatment Massive Haemoptysis (same as Hemoptysis, I believe) in Cystic Fibrosis with Tranexamic Acid (TA)" is more geared toward what I wanted which is to have the solution to the problem by administering TA orally. I hope that the author will not mind me posting the Conclusion of the article here... here it is.
<br />
<br />Conclusion:
<br />For patients with CF, haemoptysis is a frightening event that for many is associated with a period of decline in their lung function and clinical condition. There is also an excess mortality that accompanies such an event. Unfortunately, the evidence base informing clinicians of the optimal strategy to treat this complication of CF is poor and limited to a base of expert opinion that for the most part lacks consensus. Rigorous randomized trials are required to fill this evidence gap. From JRSM July 1, 2011 104:suppl_1 S49-S52
<br />
<br />-saveferris2009 is this the article that you were speaking of or is there another one.
<br />
<br />Conclusion:
<br />For patients with CF, haemoptysis is a frightening event that for many is associated with a period of decline in their lung function and clinical condition. There is also an excess mortality that accompanies such an event. Unfortunately, the evidence base informing clinicians of the optimal strategy to treat this complication of CF is poor and limited to a base of expert opinion that for the most part lacks consensus. Rigorous randomized trials are required to fill this evidence gap. From JRSM July 1, 2011 104:suppl_1 S49-S52
<br />
<br />-saveferris2009 is this the article that you were speaking of or is there another one.
B
BreetheFree
Guest
<br>