Hemoptysis - Solution without Embolization

BreetheFree · Jul 9, 2011

BreetheFree · Jul 9, 2011

BreetheFree · Jul 9, 2011

saveferris2009 · Jul 10, 2011

I am so happy you posted this article about tranexamic acid. Another article was just published, but I couldn't read it because I had to pay for the article.

Thank you so much for posting!

saveferris2009 · Jul 10, 2011

I am so happy you posted this article about tranexamic acid. Another article was just published, but I couldn't read it because I had to pay for the article.

Thank you so much for posting!

saveferris2009 · Jul 10, 2011

I am so happy you posted this article about tranexamic acid. Another article was just published, but I couldn't read it because I had to pay for the article.
 
 Thank you so much for posting!

moxie1 · Jul 11, 2011

Interesting about the trans....acid (sorry didn't remember the spelling).
 
My doctor mentioned that to me years ago when I started having hemo problems. I ended up switching cf centers, and kind of forgot about it. I stopped having problems after I cut my dose of Pulmozyme to once every 3 days, but I will certainly remember this in case of future need.
 
I really want to hear about your cpt and what you were told to do differently. I'm guessing you don't use a vest?

moxie1 · Jul 11, 2011

Interesting about the trans....acid (sorry didn't remember the spelling).

My doctor mentioned that to me years ago when I started having hemo problems. I ended up switching cf centers, and kind of forgot about it. I stopped having problems after I cut my dose of Pulmozyme to once every 3 days, but I will certainly remember this in case of future need.

I really want to hear about your cpt and what you were told to do differently. I'm guessing you don't use a vest?

moxie1 · Jul 11, 2011

Interesting about the trans....acid (sorry didn't remember the spelling).

My doctor mentioned that to me years ago when I started having hemo problems. I ended up switching cf centers, and kind of forgot about it. I stopped having problems after I cut my dose of Pulmozyme to once every 3 days, but I will certainly remember this in case of future need.

I really want to hear about your cpt and what you were told to do differently. I'm guessing you don't use a vest?

LouLou · Jul 11, 2011

Becki, Do you still see benefits from Pulmozyme used every 3rd day? I also stopped using it to prevent hemoptysis.

LouLou · Jul 11, 2011

Becki, Do you still see benefits from Pulmozyme used every 3rd day? I also stopped using it to prevent hemoptysis.

LouLou · Jul 11, 2011

Becki, Do you still see benefits from Pulmozyme used every 3rd day? I also stopped using it to prevent hemoptysis.

LouLou · Jul 11, 2011

Good to know Bree about the hemophiliac drug and welcome to cf.com by the way! Will keep it in mind if it ever becomes an issue again. I had an embolization in 2008 after more than a decade of daily bleeds. Can you believe I had to twist arms to get the BAE because I didn't fit into one of the 4-6 reasons to embolize (episode 1+ cup, anemia, etc.)?? The surgeon was amazed at the amount of damaged vessels once in there. He was one of the people against my decision initially to get a BAE. The damage was quite extensive and he had to back out to two major brochial arteries in my right lobe. I have to wonder how much damage the years of hemoptysis caused but who knows really. Hindsight is 20/20.

I'd be interested to hear if you were more a classic case of hemoptysis where it came out of nowhere and was a substantial amt or was it more like a light trickle to a few Tbsps?

I no longer bleed just streak when I am starting to exacerbate.

LouLou · Jul 11, 2011

Good to know Bree about the hemophiliac drug and welcome to cf.com by the way! Will keep it in mind if it ever becomes an issue again. I had an embolization in 2008 after more than a decade of daily bleeds. Can you believe I had to twist arms to get the BAE because I didn't fit into one of the 4-6 reasons to embolize (episode 1+ cup, anemia, etc.)?? The surgeon was amazed at the amount of damaged vessels once in there. He was one of the people against my decision initially to get a BAE. The damage was quite extensive and he had to back out to two major brochial arteries in my right lobe. I have to wonder how much damage the years of hemoptysis caused but who knows really. Hindsight is 20/20.

I'd be interested to hear if you were more a classic case of hemoptysis where it came out of nowhere and was a substantial amt or was it more like a light trickle to a few Tbsps?

I no longer bleed just streak when I am starting to exacerbate.

LouLou · Jul 11, 2011

Good to know Bree about the hemophiliac drug and welcome to cf.com by the way! Will keep it in mind if it ever becomes an issue again. I had an embolization in 2008 after more than a decade of daily bleeds. Can you believe I had to twist arms to get the BAE because I didn't fit into one of the 4-6 reasons to embolize (episode 1+ cup, anemia, etc.)?? The surgeon was amazed at the amount of damaged vessels once in there. He was one of the people against my decision initially to get a BAE. The damage was quite extensive and he had to back out to two major brochial arteries in my right lobe. I have to wonder how much damage the years of hemoptysis caused but who knows really. Hindsight is 20/20.
 
 I'd be interested to hear if you were more a classic case of hemoptysis where it came out of nowhere and was a substantial amt or was it more like a light trickle to a few Tbsps?
 
 I no longer bleed just streak when I am starting to exacerbate.

moxie1 · Jul 11, 2011

Hi Lauren,
 
I do still see a benefit of doing a decreased dose of Pulmozyme. In fact, I mark it on the calendar to keep track of when my Pulmozyme days are, but my lungs usually "know" it's time for a dose.
 
At first it was hard to decrease that much and I did it every other day because of feeling "yucky" in the lungs, but my pfts didn't drop at all with the decreased dose so I decreased it even further with no bad results. I think part of the reason I was able to decrease was that I also started hypertonic saline. I do saline whenever I don't do Pulmozyme.

moxie1 · Jul 11, 2011

Hi Lauren,

Ido still see a benefit of doing a decreased dose of Pulmozyme. In fact, I mark it on the calendar to keep track of when my Pulmozyme days are, but my lungs usually "know" it's time for a dose.

At first it was hard to decrease that much and I did it every other day because of feeling "yucky" in the lungs, but my pfts didn't drop at all with the decreased dose so I decreased it even further with no bad results. I think part of the reason I was able to decrease was that I also started hypertonic saline. I do saline whenever I don't do Pulmozyme.

moxie1 · Jul 11, 2011

Hi Lauren,

Ido still see a benefit of doing a decreased dose of Pulmozyme. In fact, I mark it on the calendar to keep track of when my Pulmozyme days are, but my lungs usually "know" it's time for a dose.

At first it was hard to decrease that much and I did it every other day because of feeling "yucky" in the lungs, but my pfts didn't drop at all with the decreased dose so I decreased it even further with no bad results. I think part of the reason I was able to decrease was that I also started hypertonic saline. I do saline whenever I don't do Pulmozyme.

Oneof65 · Jul 12, 2011

moxie1, I'm curious as to your thoughts on skipping pulmozyme. Is it because you are worried about bleeding?

Oneof65 · Jul 12, 2011

moxie1, I'm curious as to your thoughts on skipping pulmozyme. Is it because you are worried about bleeding?

Hemoptysis - Solution without Embolization

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