Any Cf'ers with factor five

Andrea719

New member
My name is Andrea I am 30 yrs old born w/CF. On 1/11/11 I passed out at my work & was rush to the hospital, my diagnosed was a Pulmonary Embolism! Yes thats right! I had all the test to confirm that this was a blood clot in my lung. After further blood testing I was diagnosed with Factor Five, I am wonder do any other Cf'er have Factor Five it is also inherated from one of your parents mostly of Eastern European. My Cf Doc said this is almost unheard of....
 

Andrea719

New member
My name is Andrea I am 30 yrs old born w/CF. On 1/11/11 I passed out at my work & was rush to the hospital, my diagnosed was a Pulmonary Embolism! Yes thats right! I had all the test to confirm that this was a blood clot in my lung. After further blood testing I was diagnosed with Factor Five, I am wonder do any other Cf'er have Factor Five it is also inherated from one of your parents mostly of Eastern European. My Cf Doc said this is almost unheard of....
 

Andrea719

New member
My name is Andrea I am 30 yrs old born w/CF. On 1/11/11 I passed out at my work & was rush to the hospital, my diagnosed was a Pulmonary Embolism! Yes thats right! I had all the test to confirm that this was a blood clot in my lung. After further blood testing I was diagnosed with Factor Five, I am wonder do any other Cf'er have Factor Five it is also inherated from one of your parents mostly of Eastern European. My Cf Doc said this is almost unheard of....
 

triples15

Super Moderator
Hi Andrea, welcome to the site!

I'm sorry to hear about your experience. Yuck!

I'm not familiar with factor five but I know that there are some other CFers on this board that also have factor five. If you do a search on this site you will see a few threads which talk about it.

Also, I think you may get more responses if you post this in the "Adult" section. A lot more people read there.

Welcome again!

Autumn
 

triples15

Super Moderator
Hi Andrea, welcome to the site!

I'm sorry to hear about your experience. Yuck!

I'm not familiar with factor five but I know that there are some other CFers on this board that also have factor five. If you do a search on this site you will see a few threads which talk about it.

Also, I think you may get more responses if you post this in the "Adult" section. A lot more people read there.

Welcome again!

Autumn
 

triples15

Super Moderator
Hi Andrea, welcome to the site!
<br />
<br />I'm sorry to hear about your experience. Yuck!
<br />
<br />I'm not familiar with factor five but I know that there are some other CFers on this board that also have factor five. If you do a search on this site you will see a few threads which talk about it.
<br />
<br />Also, I think you may get more responses if you post this in the "Adult" section. A lot more people read there.
<br />
<br />Welcome again!
<br />
<br />Autumn
 

Twistofchaos

New member
My mom who often suffered from Thrombosis (blood clots mostly in the legs) is homozygous (the gene in both chromosomes) on Factor Five and is on constant blood thinning stuff now.

So a couple years ago when this Factor Five became more known me and my sister then also got tested. Believe I'm Heterozygous (gene in one chromosome but not the other) on it myself.
(so in this case still a slightly higher risk than normal, different than how that works with CF for example where you just become a carrier, and something to keep in mind atleast. Fe. I stopped using vitamine K that thickens blood.)

I think it's a good idea people get tested on it if Thrombosis runs in the family so they can keep it in mind fe. with long hospital stays and types of drugs. And if you've got the gene in both chromosomes even to start with bloodthinning medication because you've got a really high risk of blood clots forming then.

Do you have it in both chromosomes?
To have it in one is not unheard of, some five of a hundred people will have that. On both chromosomes is rare indeed, about one in five thousand.

Sorry to hear and hope you recovered well!
 

Twistofchaos

New member
My mom who often suffered from Thrombosis (blood clots mostly in the legs) is homozygous (the gene in both chromosomes) on Factor Five and is on constant blood thinning stuff now.

So a couple years ago when this Factor Five became more known me and my sister then also got tested. Believe I'm Heterozygous (gene in one chromosome but not the other) on it myself.
(so in this case still a slightly higher risk than normal, different than how that works with CF for example where you just become a carrier, and something to keep in mind atleast. Fe. I stopped using vitamine K that thickens blood.)

I think it's a good idea people get tested on it if Thrombosis runs in the family so they can keep it in mind fe. with long hospital stays and types of drugs. And if you've got the gene in both chromosomes even to start with bloodthinning medication because you've got a really high risk of blood clots forming then.

Do you have it in both chromosomes?
To have it in one is not unheard of, some five of a hundred people will have that. On both chromosomes is rare indeed, about one in five thousand.

Sorry to hear and hope you recovered well!
 

Twistofchaos

New member
My mom who often suffered from Thrombosis (blood clots mostly in the legs) is homozygous (the gene in both chromosomes) on Factor Five and is on constant blood thinning stuff now.
<br />
<br />So a couple years ago when this Factor Five became more known me and my sister then also got tested. Believe I'm Heterozygous (gene in one chromosome but not the other) on it myself.
<br />(so in this case still a slightly higher risk than normal, different than how that works with CF for example where you just become a carrier, and something to keep in mind atleast. Fe. I stopped using vitamine K that thickens blood.)
<br />
<br />I think it's a good idea people get tested on it if Thrombosis runs in the family so they can keep it in mind fe. with long hospital stays and types of drugs. And if you've got the gene in both chromosomes even to start with bloodthinning medication because you've got a really high risk of blood clots forming then.
<br />
<br />Do you have it in both chromosomes?
<br />To have it in one is not unheard of, some five of a hundred people will have that. On both chromosomes is rare indeed, about one in five thousand.
<br />
<br />Sorry to hear and hope you recovered well!
<br />
 

chrissyd

New member
Hi, I'm Chrissy. I'm 33 with CF dx at 21...I do have Factor Five Leidens mutation. I believe I only have on copy, because I do not have many blood clotting issues unless I'm doing something to add to my risk (like smoking or being pregnant)At least thats what my docs told me about it. We only found it after I suffered 5 miscarriages...everyone was stumped because my CF doc said that my CF was not the cause. So after several tests I ended up going to a specialist who came back and said I also had something called lupus anticoagulant which is why when I got pregnant I had the miscarriages. The two combined to increase my risk.
Oddly enough my best friend (with out CF) has two copies of factor five, she has had several blood clots because of it.

<img src="i/expressions/rose.gif" border="0">
 

chrissyd

New member
Hi, I'm Chrissy. I'm 33 with CF dx at 21...I do have Factor Five Leidens mutation. I believe I only have on copy, because I do not have many blood clotting issues unless I'm doing something to add to my risk (like smoking or being pregnant)At least thats what my docs told me about it. We only found it after I suffered 5 miscarriages...everyone was stumped because my CF doc said that my CF was not the cause. So after several tests I ended up going to a specialist who came back and said I also had something called lupus anticoagulant which is why when I got pregnant I had the miscarriages. The two combined to increase my risk.
Oddly enough my best friend (with out CF) has two copies of factor five, she has had several blood clots because of it.

<img src="i/expressions/rose.gif" border="0">
 

chrissyd

New member
Hi, I'm Chrissy. I'm 33 with CF dx at 21...I do have Factor Five Leidens mutation. I believe I only have on copy, because I do not have many blood clotting issues unless I'm doing something to add to my risk (like smoking or being pregnant)At least thats what my docs told me about it. We only found it after I suffered 5 miscarriages...everyone was stumped because my CF doc said that my CF was not the cause. So after several tests I ended up going to a specialist who came back and said I also had something called lupus anticoagulant which is why when I got pregnant I had the miscarriages. The two combined to increase my risk.
<br />Oddly enough my best friend (with out CF) has two copies of factor five, she has had several blood clots because of it.
<br />
<br /><img src="i/expressions/rose.gif" border="0">
 
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