Hemoptysis

[Ryleigh]

What are your experiences with Hemoptysis? I've been having major problems with hemoptysis for the past 3 years. I've had several embolizations, had to be on a ventilator twice, but in the past year or so I've been doing better, hope it continues!

 

[Ryleigh]

What are your experiences with Hemoptysis? I've been having major problems with hemoptysis for the past 3 years. I've had several embolizations, had to be on a ventilator twice, but in the past year or so I've been doing better, hope it continues!

 

[thelizardqueen]

I had a severe hemopytosis episode that lasted for 2 months straight - everyday I coughed up cups of blood and had to have a pulmonary embolization done. Since then (and this was 3 years ago), I've had 3 minor episodes.

 

[thelizardqueen]

I had a severe hemopytosis episode that lasted for 2 months straight - everyday I coughed up cups of blood and had to have a pulmonary embolization done. Since then (and this was 3 years ago), I've had 3 minor episodes.

 

[AttyMom]

I thus far have only had one that lasted for a few hours. Since then I have "streaked" blood, but not another hemoptysis.

 

[AttyMom]

I thus far have only had one that lasted for a few hours. Since then I have "streaked" blood, but not another hemoptysis.

 

[Jane]

We haven't had this experience and are a little ignorant. It sound very scarey. Could someone explain embolization and what neccessitates it?
Thanks

 

[Jane]

We haven't had this experience and are a little ignorant. It sound very scarey. Could someone explain embolization and what neccessitates it?
Thanks

 

[Landy]

Ryleigh
What inhaled meds are you on?
The only reason I ask is....I'm sure I'm the minority here, but Pulmozyme causes me to cough up blood and since discontinuation of it, I've had a few occurances (sp) every few months, but nothing like I did when I was using Pulmozyme. It could all be a coincidence I guess but I really feel that it irritated my lungs.

 

[Landy]

Ryleigh
What inhaled meds are you on?
The only reason I ask is....I'm sure I'm the minority here, but Pulmozyme causes me to cough up blood and since discontinuation of it, I've had a few occurances (sp) every few months, but nothing like I did when I was using Pulmozyme. It could all be a coincidence I guess but I really feel that it irritated my lungs.

 

[JazzysMom]

I do take Pulmozyme, but if I am having active bleeds that I dont used it. It is the first thing I stop & keep off of until the bleeds seem to subside!

 

[JazzysMom]

I do take Pulmozyme, but if I am having active bleeds that I dont used it. It is the first thing I stop & keep off of until the bleeds seem to subside!

 

[Diane]

I had 2 massive hemoptysis's within 2 months of each other and was embolized for both.... I still have issues with hemoptysis quite often ( too often for comfort) but i thank God the episodes are small.
-----------------------------------------------------------------------------------------------------------------------------------------------------------
Jane ~ a pulmonary embolization is where an intervention radiologist goes in, thru a main artery in the groin area, and basically cauterizes the bleeding blood vessel ( or in my case also inserts a coil or 2). What would necessitate that, is a very large bleed that is ongoing and life threatening.

 

[Diane]

I had 2 massive hemoptysis's within 2 months of each other and was embolized for both.... I still have issues with hemoptysis quite often ( too often for comfort) but i thank God the episodes are small.
-----------------------------------------------------------------------------------------------------------------------------------------------------------
Jane ~ a pulmonary embolization is where an intervention radiologist goes in, thru a main artery in the groin area, and basically cauterizes the bleeding blood vessel ( or in my case also inserts a coil or 2). What would necessitate that, is a very large bleed that is ongoing and life threatening.

 

[thelizardqueen]

I had the coil put in me as well. Hemoptysis is very scary the first time around (especially if it is a severe episode), but like all other CF related things, it gets less scary with time. The procedure is also done while you are awake. They give you a heavy drug to relax you, and they numb the area of the groin - so you don't fell what's going on.

 

[thelizardqueen]

I had the coil put in me as well. Hemoptysis is very scary the first time around (especially if it is a severe episode), but like all other CF related things, it gets less scary with time. The procedure is also done while you are awake. They give you a heavy drug to relax you, and they numb the area of the groin - so you don't fell what's going on.

 

[Ryleigh]

I was on Tobi and Pulmozyme but three years ago when I had all the massive hemoptysis they took me off. I have tried a few times to go back on but I would always have an episode. So I haven't been on them since. My hemoptysis episodes seem to happen when there's an infection, they put me on IV meds and then it slowly goes away.

 

[Ryleigh]

I was on Tobi and Pulmozyme but three years ago when I had all the massive hemoptysis they took me off. I have tried a few times to go back on but I would always have an episode. So I haven't been on them since. My hemoptysis episodes seem to happen when there's an infection, they put me on IV meds and then it slowly goes away.

 

[Faust]

I used to bleed fairly often. I had atleast one REAL bad bleed, and luckily it stopped with high doses of vitamin K. I've had two bleeds since I have been on oregano oil, both very light and quick. I haven't had one in a couple of months easily, which is a huge improvement for me. I think actively taking things that have very strong anti-inflamatory properties will drastically reduce hemoptysis.

 

[Faust]

I used to bleed fairly often. I had atleast one REAL bad bleed, and luckily it stopped with high doses of vitamin K. I've had two bleeds since I have been on oregano oil, both very light and quick. I haven't had one in a couple of months easily, which is a huge improvement for me. I think actively taking things that have very strong anti-inflamatory properties will drastically reduce hemoptysis.