Just happened to me. Had shortness of breath and thought I had pneumonia so went to hospital and was told I had PE in multiple arteries and DVT in calf on left side. Kept in hospital 3 days with lovenox injections and sent home with 10 day supply of injections and then to switch to a pill. This just happened and came out if blue. I was walking 5mls a day. I’m 55 and have teens at home. This thread makes me feel better that thus will resolve eventually. Thank you!
Just happened to me. Had shortness of breath and thought I had pneumonia so went to hospital and was told I had PE in multiple arteries and DVT in calf on left side. Kept in hospital 3 days with lovenox injections and sent home with 10 day supply of injections and then to switch to a pill. This just happened and came out if blue. I was walking 5mls a day. I’m 55 and have teens at home. This thread makes me feel better that thus will resolve eventually. Thank you!
My partner was diagnosed Factor 5 linden about 15 years ago after having a massive clotting event. he almost died. A brave interventional radiologist saved his life. He was eventually put on Xarelto daily to prevent further clots. Fast forward to 1 week ago. Rick started having swelling in his leg and he started to have problems breathing and felt his heart was racing. Went to ER and they discovered "old clots" in one of his legs but nothing in his lungs. I am having this feeling that Rick may be having a clotting reaction caused by his 3rd covid booster. We are both scared and want to come to Mayo Clinic in Phoenix.
My partner was diagnosed Factor 5 linden about 15 years ago after having a massive clotting event. he almost died. A brave interventional radiologist saved his life. He was eventually put on Xarelto daily to prevent further clots. Fast forward to 1 week ago. Rick started having swelling in his leg and he started to have problems breathing and felt his heart was racing. Went to ER and they discovered "old clots" in one of his legs but nothing in his lungs. I am having this feeling that Rick may be having a clotting reaction caused by his 3rd covid booster. We are both scared and want to come to Mayo Clinic in Phoenix.
@mjhibb, to request an appointment, you can call Mayo Clinic in Arizona or submit the online form to schedule a time to speak with a coordinator. It's really simple to fill out. See more information here: http://mayocl.in/1mtmR63
Hi, all. Just diagnosed after a blood test yesterday. It seems 4 of my cousins have Factor V and were less than forthcoming in calling everyone. Speaking with my primary care guy today, but he's a bit of a quack. Just trying to sort out the "so what" of this. I'm 51, MWM, moderate alcohol use, no tobacco, in reasonably good shape. Just finding my way for me and my kids (yet to be tested, but ball's in motion). If you have any solid advice, I'm all ears!
Happy New Year to all.
Hi, all. Just diagnosed after a blood test yesterday. It seems 4 of my cousins have Factor V and were less than forthcoming in calling everyone. Speaking with my primary care guy today, but he's a bit of a quack. Just trying to sort out the "so what" of this. I'm 51, MWM, moderate alcohol use, no tobacco, in reasonably good shape. Just finding my way for me and my kids (yet to be tested, but ball's in motion). If you have any solid advice, I'm all ears!
Happy New Year to all.
Hi @gunshipgator, Welcome to Mayo Clinic Connect. What’s the old axiom…we can choose our friends but we can’t choose our relatives? Genetics are truly an interesting subject and in your case, you can see them at work in your family tree. With several of your cousins already diagnosed with this genetic mutation, Factor V Leiden, it is a good idea to have your kids tested just so they’re aware.
Factor V Leiden is a mutation in a clotting factor in the blood. It can increase the likelyhood of blood clots.
I’m sure you’re searching for information and if you haven’t already seen this, here is an article from our Mayo website about the condition, how it’s diagnosed and treatment options. The key is prevent blood clotting events.
I have a very long and severe history with blood clots and on Monday they found my 30th PE. I have Factor V and Lupus Anticoagulation mutations. I feel like all I am doing these days is recovering from blood clots and the clots are getting worse and more severe each time. I am also becoming blood thinner resistant. My current PE happened while on Warfarin and Lovenox. I feel like I am the only person out here dealing with all of these clots all of the time.
I have heterozygous mutation Leiden factor 5 which means some elevated risk of clots for me but more importantly i pass the mutation to my kids. 2 of my 3 children tested for Leiden, oldest is also only single heterozygous mutation, but middle child has both gene mutations causing full Leiden factor 5. He's only 6. Leiden comes from my mom's side. She is single gene mutation carrier, her mother is full Leiden. My Gammy's brother, not sure which he has, but his son passed away on a family vacation from dislodged dvt, he was 40ish, that was about 7 years ago now. That is when the family discovered we had this hereditary disorder. Gammy has survived multiple strokes, triple bypass, abdominal aortic Stent, she currently lives with a football sized hernia on the left side to mid stomach which is helping hold the stent in place. She experienced bleeding somewhere, drs were never able to determine where the bleed was or where the blood went, lost 4 pints of blood after hospital admittance she was given 4 bags of blood and after a week off all her regular meds she developed multiple dvt's and has had to be on Eliquis ever since. She's 84. We're not sure which of her parents we inherited Leiden from. I still need to have my daughter tested for it, Dr's won't test until she is 6yrs old. Has anyone noticed anything during childhood I should watch for or be aware of risks for with Leiden? Thanks and positive vibes to everyone!
I have Factor V Leiden. Diagnosed in 2003 when my daughter had a knee surgery and then developed a clot. They tested her and found she had Factor V. I then got tested because they said it was hereditary and I wanted to find out if it came from me. Sure enough, I have 1 gene affected and that was passed to her. Another one of my 3 birth children tested positive, as well as my only grandchild. My dad has since tested positive as well. I suffered a clot in 2007. That was my first ever. Never got one through all of my pregnancies or at any other time. I believe it was because I took a management job in a busy Planet Fitness, which requires you to stand for your whole shift, no matter how long. I have worked up to 21 hours straight during a couple of big sales. My regular shift was 10 hours long. Murder on the legs! It was about a month into managing that I formed a clot. Seems like it would be a physically active job, but a lot of it, asa manager, is standing with customer issues or time on the phone with customers and other businesses, always standing, especially in the beginning while learning the job. I worked there for 13 years and my legs always hurt terribly, but considerably less if I wore full length support stockings. After the first year, I wore the stockings always. I never developed another clot but even now, after leaving that job 3.5 years ago, my legs still hurt all the time, but the right leg, which is where I had the clot, hurts so much worse than the other. My clot was in my upper thigh and in a superficial vein, not in a deep vein. Drop bring is far worse.
PEs and DVTs diagnosed Dec. 1st 2022. Heterogeneous Factor V test was positive. After release from hospital, I'm being treated with Eliquis. Was in the ER a week ago due to shortness of breath and surface vein thrombi. No new clots found in lungs, and my shortness of breath is likely the moderate virus I'm fighting off. But, I'm having a Lot of intermittent problems thinking, reading, etc and my anxiety is spiking, too. That, coupled with the surface vein thrombi might mean my body is still trying to make clots, and the meds are sludging them up, but it's still causing random reduced blood flow for periods of time. This can't be good for my brain or my organs.
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had factor v for 48 years i have had three pe now i need surgery and i and worry about another dvt or pe
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2 ReactionsWelcome @ahum and @marine1954, that is unsettling to fear a blood clot that could cause a pulmonary embolism (PE) or deep vein thrombosis (DVT).
Did your care team offer suggestions on how to prevent blood clots?
Marine, what surgery will you be having?
My partner was diagnosed Factor 5 linden about 15 years ago after having a massive clotting event. he almost died. A brave interventional radiologist saved his life. He was eventually put on Xarelto daily to prevent further clots. Fast forward to 1 week ago. Rick started having swelling in his leg and he started to have problems breathing and felt his heart was racing. Went to ER and they discovered "old clots" in one of his legs but nothing in his lungs. I am having this feeling that Rick may be having a clotting reaction caused by his 3rd covid booster. We are both scared and want to come to Mayo Clinic in Phoenix.
@mjhibb, to request an appointment, you can call Mayo Clinic in Arizona or submit the online form to schedule a time to speak with a coordinator. It's really simple to fill out. See more information here: http://mayocl.in/1mtmR63
Hi, all. Just diagnosed after a blood test yesterday. It seems 4 of my cousins have Factor V and were less than forthcoming in calling everyone. Speaking with my primary care guy today, but he's a bit of a quack. Just trying to sort out the "so what" of this. I'm 51, MWM, moderate alcohol use, no tobacco, in reasonably good shape. Just finding my way for me and my kids (yet to be tested, but ball's in motion). If you have any solid advice, I'm all ears!
Happy New Year to all.
Hi @gunshipgator, Welcome to Mayo Clinic Connect. What’s the old axiom…we can choose our friends but we can’t choose our relatives? Genetics are truly an interesting subject and in your case, you can see them at work in your family tree. With several of your cousins already diagnosed with this genetic mutation, Factor V Leiden, it is a good idea to have your kids tested just so they’re aware.
Factor V Leiden is a mutation in a clotting factor in the blood. It can increase the likelyhood of blood clots.
https://www.mayoclinic.org/diseases-conditions/factor-v-leiden/symptoms-causes/syc-20372423I’m sure you’re searching for information and if you haven’t already seen this, here is an article from our Mayo website about the condition, how it’s diagnosed and treatment options. The key is prevent blood clotting events.
Have you been seen by a hematolgist who specializes in blood disorders? Was this discovered through a random physical or did you have a blood clot??
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3 ReactionsI have a very long and severe history with blood clots and on Monday they found my 30th PE. I have Factor V and Lupus Anticoagulation mutations. I feel like all I am doing these days is recovering from blood clots and the clots are getting worse and more severe each time. I am also becoming blood thinner resistant. My current PE happened while on Warfarin and Lovenox. I feel like I am the only person out here dealing with all of these clots all of the time.
-
Like -
Helpful -
Hug
3 ReactionsI have heterozygous mutation Leiden factor 5 which means some elevated risk of clots for me but more importantly i pass the mutation to my kids. 2 of my 3 children tested for Leiden, oldest is also only single heterozygous mutation, but middle child has both gene mutations causing full Leiden factor 5. He's only 6. Leiden comes from my mom's side. She is single gene mutation carrier, her mother is full Leiden. My Gammy's brother, not sure which he has, but his son passed away on a family vacation from dislodged dvt, he was 40ish, that was about 7 years ago now. That is when the family discovered we had this hereditary disorder. Gammy has survived multiple strokes, triple bypass, abdominal aortic Stent, she currently lives with a football sized hernia on the left side to mid stomach which is helping hold the stent in place. She experienced bleeding somewhere, drs were never able to determine where the bleed was or where the blood went, lost 4 pints of blood after hospital admittance she was given 4 bags of blood and after a week off all her regular meds she developed multiple dvt's and has had to be on Eliquis ever since. She's 84. We're not sure which of her parents we inherited Leiden from. I still need to have my daughter tested for it, Dr's won't test until she is 6yrs old. Has anyone noticed anything during childhood I should watch for or be aware of risks for with Leiden? Thanks and positive vibes to everyone!
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Like -
Helpful -
Hug
1 ReactionI have Factor V Leiden. Diagnosed in 2003 when my daughter had a knee surgery and then developed a clot. They tested her and found she had Factor V. I then got tested because they said it was hereditary and I wanted to find out if it came from me. Sure enough, I have 1 gene affected and that was passed to her. Another one of my 3 birth children tested positive, as well as my only grandchild. My dad has since tested positive as well. I suffered a clot in 2007. That was my first ever. Never got one through all of my pregnancies or at any other time. I believe it was because I took a management job in a busy Planet Fitness, which requires you to stand for your whole shift, no matter how long. I have worked up to 21 hours straight during a couple of big sales. My regular shift was 10 hours long. Murder on the legs! It was about a month into managing that I formed a clot. Seems like it would be a physically active job, but a lot of it, asa manager, is standing with customer issues or time on the phone with customers and other businesses, always standing, especially in the beginning while learning the job. I worked there for 13 years and my legs always hurt terribly, but considerably less if I wore full length support stockings. After the first year, I wore the stockings always. I never developed another clot but even now, after leaving that job 3.5 years ago, my legs still hurt all the time, but the right leg, which is where I had the clot, hurts so much worse than the other. My clot was in my upper thigh and in a superficial vein, not in a deep vein. Drop bring is far worse.
PEs and DVTs diagnosed Dec. 1st 2022. Heterogeneous Factor V test was positive. After release from hospital, I'm being treated with Eliquis. Was in the ER a week ago due to shortness of breath and surface vein thrombi. No new clots found in lungs, and my shortness of breath is likely the moderate virus I'm fighting off. But, I'm having a Lot of intermittent problems thinking, reading, etc and my anxiety is spiking, too. That, coupled with the surface vein thrombi might mean my body is still trying to make clots, and the meds are sludging them up, but it's still causing random reduced blood flow for periods of time. This can't be good for my brain or my organs.
Anyone else have this issue? Thoughts?