blood clotters for hemoptysis

[Melissa75]

This is not the most useful info, but here goes...
I was diagnosed with a clotting disorder after my second massive hemoptysis. It was during a bronchoscopy, and the drs sent me to a hematologist pretty much in hopes of not being to blame for me ending up in the ICU. "Luckily" they found that I don't have a sufficient amount of a clotting factor called Von Willebrand's. Apparently it is a genetic deficiency and may be as prevalent as 1/100 with even male/female distribution. I did not have the other typical symptoms of nose bleeds, heavy periods, bruising, but I did bleed abnormally and inexplicably during pregnancy (which is supposed to temporarily cure Von Willebrand's disease!).
Anyway, I don't take the med on a regular basis because I have been fine for a while, but it is called DDAVP.
If you can get to a hematologist to have all your factors tested, who knows? you may have Von Willebrand's disease too given how common it is.

 

[Melissa75]

This is not the most useful info, but here goes...
I was diagnosed with a clotting disorder after my second massive hemoptysis. It was during a bronchoscopy, and the drs sent me to a hematologist pretty much in hopes of not being to blame for me ending up in the ICU. "Luckily" they found that I don't have a sufficient amount of a clotting factor called Von Willebrand's. Apparently it is a genetic deficiency and may be as prevalent as 1/100 with even male/female distribution. I did not have the other typical symptoms of nose bleeds, heavy periods, bruising, but I did bleed abnormally and inexplicably during pregnancy (which is supposed to temporarily cure Von Willebrand's disease!).
Anyway, I don't take the med on a regular basis because I have been fine for a while, but it is called DDAVP.
If you can get to a hematologist to have all your factors tested, who knows? you may have Von Willebrand's disease too given how common it is.

 

[Melissa75]

This is not the most useful info, but here goes...
I was diagnosed with a clotting disorder after my second massive hemoptysis. It was during a bronchoscopy, and the drs sent me to a hematologist pretty much in hopes of not being to blame for me ending up in the ICU. "Luckily" they found that I don't have a sufficient amount of a clotting factor called Von Willebrand's. Apparently it is a genetic deficiency and may be as prevalent as 1/100 with even male/female distribution. I did not have the other typical symptoms of nose bleeds, heavy periods, bruising, but I did bleed abnormally and inexplicably during pregnancy (which is supposed to temporarily cure Von Willebrand's disease!).
Anyway, I don't take the med on a regular basis because I have been fine for a while, but it is called DDAVP.
If you can get to a hematologist to have all your factors tested, who knows? you may have Von Willebrand's disease too given how common it is.

 

[Melissa75]

This is not the most useful info, but here goes...
I was diagnosed with a clotting disorder after my second massive hemoptysis. It was during a bronchoscopy, and the drs sent me to a hematologist pretty much in hopes of not being to blame for me ending up in the ICU. "Luckily" they found that I don't have a sufficient amount of a clotting factor called Von Willebrand's. Apparently it is a genetic deficiency and may be as prevalent as 1/100 with even male/female distribution. I did not have the other typical symptoms of nose bleeds, heavy periods, bruising, but I did bleed abnormally and inexplicably during pregnancy (which is supposed to temporarily cure Von Willebrand's disease!).
Anyway, I don't take the med on a regular basis because I have been fine for a while, but it is called DDAVP.
If you can get to a hematologist to have all your factors tested, who knows? you may have Von Willebrand's disease too given how common it is.

 

[Melissa75]

This is not the most useful info, but here goes...
<br />I was diagnosed with a clotting disorder after my second massive hemoptysis. It was during a bronchoscopy, and the drs sent me to a hematologist pretty much in hopes of not being to blame for me ending up in the ICU. "Luckily" they found that I don't have a sufficient amount of a clotting factor called Von Willebrand's. Apparently it is a genetic deficiency and may be as prevalent as 1/100 with even male/female distribution. I did not have the other typical symptoms of nose bleeds, heavy periods, bruising, but I did bleed abnormally and inexplicably during pregnancy (which is supposed to temporarily cure Von Willebrand's disease!).
<br />Anyway, I don't take the med on a regular basis because I have been fine for a while, but it is called DDAVP.
<br />If you can get to a hematologist to have all your factors tested, who knows? you may have Von Willebrand's disease too given how common it is.

 

[TestifyToLove]

I know people with bleeding disorders are given Amicar for bleeding in mucous membranes. Amicar does NOT increase the clotting ability, but it decreases the mucous production so that the blood clot can remain more stabilized to actually heal.

I personally haven't found Amicar very effective for any of my 3 with bleeding disorders and have to skip straight factor increasing options instead.

I don't know if your doctors would consider Amicar a viable option or not. I don't know what decreasing mucous production would do in a CFer. But, its a non-clotting factor product that IS used to combat bleeding issues in mucous membranes, which the lungs are.

 

[TestifyToLove]

I know people with bleeding disorders are given Amicar for bleeding in mucous membranes. Amicar does NOT increase the clotting ability, but it decreases the mucous production so that the blood clot can remain more stabilized to actually heal.

I personally haven't found Amicar very effective for any of my 3 with bleeding disorders and have to skip straight factor increasing options instead.

I don't know if your doctors would consider Amicar a viable option or not. I don't know what decreasing mucous production would do in a CFer. But, its a non-clotting factor product that IS used to combat bleeding issues in mucous membranes, which the lungs are.

 

[TestifyToLove]

I know people with bleeding disorders are given Amicar for bleeding in mucous membranes. Amicar does NOT increase the clotting ability, but it decreases the mucous production so that the blood clot can remain more stabilized to actually heal.

I personally haven't found Amicar very effective for any of my 3 with bleeding disorders and have to skip straight factor increasing options instead.

I don't know if your doctors would consider Amicar a viable option or not. I don't know what decreasing mucous production would do in a CFer. But, its a non-clotting factor product that IS used to combat bleeding issues in mucous membranes, which the lungs are.

 

[TestifyToLove]

I know people with bleeding disorders are given Amicar for bleeding in mucous membranes. Amicar does NOT increase the clotting ability, but it decreases the mucous production so that the blood clot can remain more stabilized to actually heal.

I personally haven't found Amicar very effective for any of my 3 with bleeding disorders and have to skip straight factor increasing options instead.

I don't know if your doctors would consider Amicar a viable option or not. I don't know what decreasing mucous production would do in a CFer. But, its a non-clotting factor product that IS used to combat bleeding issues in mucous membranes, which the lungs are.

 

[TestifyToLove]

I know people with bleeding disorders are given Amicar for bleeding in mucous membranes. Amicar does NOT increase the clotting ability, but it decreases the mucous production so that the blood clot can remain more stabilized to actually heal.
<br />
<br />I personally haven't found Amicar very effective for any of my 3 with bleeding disorders and have to skip straight factor increasing options instead.
<br />
<br />I don't know if your doctors would consider Amicar a viable option or not. I don't know what decreasing mucous production would do in a CFer. But, its a non-clotting factor product that IS used to combat bleeding issues in mucous membranes, which the lungs are.

 

[Asexyblond23]

From about age 16 on they had me on 5mg of Vit K a day for my CF. Well when I was 23 we found out that I am Factor 5 liden whic in english means that I have a clotting problem. Also Im factor 11 deff which means my blood is thin and doesnt clot, funny those 2 dont cancel each other out. As I have gotten older the factor 5 has acted up more, my mom was fine until age 42 when she had 3 massive clots in her leg now she is on cumiden a blood thinner. Grandma is on the smae thing too.

Over the past 3 years I have had bllod problems with all my picc lines and getting blood clots on the outside of them to the point that I would be on lovenox shots during IV's. I recently got a port put in again and we do the vitamin K 5mg 3 days a week and 81mg of baby asprin everyday to try and keep the blood thin so it doesnt clot but not too thin to bleed to much, But I will tell you I bruise so easy my legs in the summer look like someone took a baseball bat to them. My dog could put his paw on mny leg and opps theres a bruise!


Hearing another option besides Vit K would be awesome!

 

[Asexyblond23]

From about age 16 on they had me on 5mg of Vit K a day for my CF. Well when I was 23 we found out that I am Factor 5 liden whic in english means that I have a clotting problem. Also Im factor 11 deff which means my blood is thin and doesnt clot, funny those 2 dont cancel each other out. As I have gotten older the factor 5 has acted up more, my mom was fine until age 42 when she had 3 massive clots in her leg now she is on cumiden a blood thinner. Grandma is on the smae thing too.

Over the past 3 years I have had bllod problems with all my picc lines and getting blood clots on the outside of them to the point that I would be on lovenox shots during IV's. I recently got a port put in again and we do the vitamin K 5mg 3 days a week and 81mg of baby asprin everyday to try and keep the blood thin so it doesnt clot but not too thin to bleed to much, But I will tell you I bruise so easy my legs in the summer look like someone took a baseball bat to them. My dog could put his paw on mny leg and opps theres a bruise!


Hearing another option besides Vit K would be awesome!

 

[Asexyblond23]

From about age 16 on they had me on 5mg of Vit K a day for my CF. Well when I was 23 we found out that I am Factor 5 liden whic in english means that I have a clotting problem. Also Im factor 11 deff which means my blood is thin and doesnt clot, funny those 2 dont cancel each other out. As I have gotten older the factor 5 has acted up more, my mom was fine until age 42 when she had 3 massive clots in her leg now she is on cumiden a blood thinner. Grandma is on the smae thing too.

Over the past 3 years I have had bllod problems with all my picc lines and getting blood clots on the outside of them to the point that I would be on lovenox shots during IV's. I recently got a port put in again and we do the vitamin K 5mg 3 days a week and 81mg of baby asprin everyday to try and keep the blood thin so it doesnt clot but not too thin to bleed to much, But I will tell you I bruise so easy my legs in the summer look like someone took a baseball bat to them. My dog could put his paw on mny leg and opps theres a bruise!


Hearing another option besides Vit K would be awesome!

 

[Asexyblond23]

From about age 16 on they had me on 5mg of Vit K a day for my CF. Well when I was 23 we found out that I am Factor 5 liden whic in english means that I have a clotting problem. Also Im factor 11 deff which means my blood is thin and doesnt clot, funny those 2 dont cancel each other out. As I have gotten older the factor 5 has acted up more, my mom was fine until age 42 when she had 3 massive clots in her leg now she is on cumiden a blood thinner. Grandma is on the smae thing too.

Over the past 3 years I have had bllod problems with all my picc lines and getting blood clots on the outside of them to the point that I would be on lovenox shots during IV's. I recently got a port put in again and we do the vitamin K 5mg 3 days a week and 81mg of baby asprin everyday to try and keep the blood thin so it doesnt clot but not too thin to bleed to much, But I will tell you I bruise so easy my legs in the summer look like someone took a baseball bat to them. My dog could put his paw on mny leg and opps theres a bruise!


Hearing another option besides Vit K would be awesome!

 

[Asexyblond23]

From about age 16 on they had me on 5mg of Vit K a day for my CF. Well when I was 23 we found out that I am Factor 5 liden whic in english means that I have a clotting problem. Also Im factor 11 deff which means my blood is thin and doesnt clot, funny those 2 dont cancel each other out. As I have gotten older the factor 5 has acted up more, my mom was fine until age 42 when she had 3 massive clots in her leg now she is on cumiden a blood thinner. Grandma is on the smae thing too.
<br />
<br />Over the past 3 years I have had bllod problems with all my picc lines and getting blood clots on the outside of them to the point that I would be on lovenox shots during IV's. I recently got a port put in again and we do the vitamin K 5mg 3 days a week and 81mg of baby asprin everyday to try and keep the blood thin so it doesnt clot but not too thin to bleed to much, But I will tell you I bruise so easy my legs in the summer look like someone took a baseball bat to them. My dog could put his paw on mny leg and opps theres a bruise!
<br />
<br />
<br />Hearing another option besides Vit K would be awesome!