Hemoptysis

saveferris2009 · Nov 25, 2009

Hemoptysis is by far the most difficult thing I've had to deal with with CF. Sorry you're going through this!

For me, my hemoptysis episodes are treated aggressively with IV antibiotics. Most other CF centers I've visited (Denver- National Jewish, Stanford, Minnesota, Cincinnati) treat a bout of hemo the same way.

I do know some people have inflammation which can lead to hemoptysis but for me, it's generally an infection getting going (just at the very beginning oftentimes before I have any increased sputum or fatigue, but white blood cell count is up).

I stop pulmozyme and any airway clearance (vest, manual CPT) because I don't want to loosen a clot that is trying to form on the area of teh bleed. Generally I stop all this for aboug 48 hours post bleed. If I'm still clear, then I know the clot has done it's job and it's a pretty safe bet to resume airway clearance.

In terms of what else can be done - not a whole heck of a lot aside from embolization and even that isn't fool proof and comes with lots of risks.

The literature states that those with higher FEV1's and more mild CF tend to get the most hemoptysis. Why? No one knows.

But know you're not alone. It sucks and is very scary!

saveferris2009 · Nov 25, 2009

Hemoptysis is by far the most difficult thing I've had to deal with with CF. Sorry you're going through this!

For me, my hemoptysis episodes are treated aggressively with IV antibiotics. Most other CF centers I've visited (Denver- National Jewish, Stanford, Minnesota, Cincinnati) treat a bout of hemo the same way.

I do know some people have inflammation which can lead to hemoptysis but for me, it's generally an infection getting going (just at the very beginning oftentimes before I have any increased sputum or fatigue, but white blood cell count is up).

I stop pulmozyme and any airway clearance (vest, manual CPT) because I don't want to loosen a clot that is trying to form on the area of teh bleed. Generally I stop all this for aboug 48 hours post bleed. If I'm still clear, then I know the clot has done it's job and it's a pretty safe bet to resume airway clearance.

In terms of what else can be done - not a whole heck of a lot aside from embolization and even that isn't fool proof and comes with lots of risks.

The literature states that those with higher FEV1's and more mild CF tend to get the most hemoptysis. Why? No one knows.

But know you're not alone. It sucks and is very scary!

saveferris2009 · Nov 25, 2009

Hemoptysis is by far the most difficult thing I've had to deal with with CF. Sorry you're going through this!

For me, my hemoptysis episodes are treated aggressively with IV antibiotics. Most other CF centers I've visited (Denver- National Jewish, Stanford, Minnesota, Cincinnati) treat a bout of hemo the same way.

I do know some people have inflammation which can lead to hemoptysis but for me, it's generally an infection getting going (just at the very beginning oftentimes before I have any increased sputum or fatigue, but white blood cell count is up).

I stop pulmozyme and any airway clearance (vest, manual CPT) because I don't want to loosen a clot that is trying to form on the area of teh bleed. Generally I stop all this for aboug 48 hours post bleed. If I'm still clear, then I know the clot has done it's job and it's a pretty safe bet to resume airway clearance.

In terms of what else can be done - not a whole heck of a lot aside from embolization and even that isn't fool proof and comes with lots of risks.

The literature states that those with higher FEV1's and more mild CF tend to get the most hemoptysis. Why? No one knows.

But know you're not alone. It sucks and is very scary!

saveferris2009 · Nov 25, 2009

Hemoptysis is by far the most difficult thing I've had to deal with with CF. Sorry you're going through this!

For me, my hemoptysis episodes are treated aggressively with IV antibiotics. Most other CF centers I've visited (Denver- National Jewish, Stanford, Minnesota, Cincinnati) treat a bout of hemo the same way.

I do know some people have inflammation which can lead to hemoptysis but for me, it's generally an infection getting going (just at the very beginning oftentimes before I have any increased sputum or fatigue, but white blood cell count is up).

I stop pulmozyme and any airway clearance (vest, manual CPT) because I don't want to loosen a clot that is trying to form on the area of teh bleed. Generally I stop all this for aboug 48 hours post bleed. If I'm still clear, then I know the clot has done it's job and it's a pretty safe bet to resume airway clearance.

In terms of what else can be done - not a whole heck of a lot aside from embolization and even that isn't fool proof and comes with lots of risks.

The literature states that those with higher FEV1's and more mild CF tend to get the most hemoptysis. Why? No one knows.

But know you're not alone. It sucks and is very scary!

saveferris2009 · Nov 25, 2009

Hemoptysis is by far the most difficult thing I've had to deal with with CF. Sorry you're going through this!
 
 For me, my hemoptysis episodes are treated aggressively with IV antibiotics. Most other CF centers I've visited (Denver- National Jewish, Stanford, Minnesota, Cincinnati) treat a bout of hemo the same way.
 
 I do know some people have inflammation which can lead to hemoptysis but for me, it's generally an infection getting going (just at the very beginning oftentimes before I have any increased sputum or fatigue, but white blood cell count is up).
 
 I stop pulmozyme and any airway clearance (vest, manual CPT) because I don't want to loosen a clot that is trying to form on the area of teh bleed. Generally I stop all this for aboug 48 hours post bleed. If I'm still clear, then I know the clot has done it's job and it's a pretty safe bet to resume airway clearance.
 
 In terms of what else can be done - not a whole heck of a lot aside from embolization and even that isn't fool proof and comes with lots of risks.
 
 The literature states that those with higher FEV1's and more mild CF tend to get the most hemoptysis. Why? No one knows.
 
 But know you're not alone. It sucks and is very scary!

cfsucks · Dec 4, 2009