I have Factor V and have been on a baby aspirin for years. My problem is every time I have an IV for a procedure, I get a blood clot or sclerosis in that vein. How can I prevent that?
Hi! I'm a 49yo f with Factor V Lieden. I've had clusters of PE's several different times. I had a severe stroke 3 years ago and 4 wks ago had 6 heart bypasses. Are there any studies I can join to help with research?
You can also contact a research coordinator with your questions. They may be able to help match you with a trial for which you are eligible.
Phone: 800-664-4542 (toll-free)
Robin, you certainly have been through several serious health events. How was recovery from your stroke? And 6 heart by passes, woah? How are you doing now?
Welcome @mjthornton78. It’s pretty normal to be scared when you’ve gotten a new diagnosis, especially if you don’t know much about. It leaves you feeling very lonely. So I’m glad you joined Connect. There are a number of members who also have Factor v Leiden which is a blood disorder which can cause abnormal clotting.
My wife has it. It was thought to be a factor in the stroke and TIAs she's had. She was recently switched to Eliquis, which will hopefully eliminate the issue. Definitely ensure your medical team takes measures to address it.
My wife has it. It was thought to be a factor in the stroke and TIAs she's had. She was recently switched to Eliquis, which will hopefully eliminate the issue. Definitely ensure your medical team takes measures to address it.
And I just had a major surgery and can't take NSAIDs or even my tumeric messes w my blood and there's an opioid epidemic.. so my pain just isn't a thing super fun cervical fusion w dysectomy on C5 and c6
Hi all,
I have Factor V Leiden as well. I have not had any issues but my late mother discovered that she had the mutation when she developed blood clots in her legs. I was tested and my doctor confirmed that I have the genetic mutation when I was about 40 years old. I informed both my daughters concerning the mutation but do not know if they inherited the gene. Any precautions or suggestions on supplements to prevent potential blood clots? I will be 70 in June.
Thanks
Liz
Hi all,
I have Factor V Leiden as well. I have not had any issues but my late mother discovered that she had the mutation when she developed blood clots in her legs. I was tested and my doctor confirmed that I have the genetic mutation when I was about 40 years old. I informed both my daughters concerning the mutation but do not know if they inherited the gene. Any precautions or suggestions on supplements to prevent potential blood clots? I will be 70 in June.
Thanks
Liz
@lizkc56
Hi Liz,
I have both Factor II and Factor V Leiden. The main precautions include avoiding estrogen (such as in birth control or hormone replacement therapy), tobacco use, and prolonged immobility. It's also important to follow a heart-healthy diet by limiting saturated fats, staying well-hydrated, and being mindful of vitamin K intake—especially K2 and leafy greens—if you're taking warfarin.
You should also be cautious with the use of ibuprofen (a type of NSAID), as it can affect platelet function and increase the risk of bleeding—especially at higher doses or with prolonged use.
You might want to speak with your doctor about regular ultrasounds to monitor for blood clots, as well as any specific dietary guidance.
Also, your daughters should see a hematologist and request a complete von Willebrand Factor (VWF) test.
@lizkc56
Hi Liz,
I have both Factor II and Factor V Leiden. The main precautions include avoiding estrogen (such as in birth control or hormone replacement therapy), tobacco use, and prolonged immobility. It's also important to follow a heart-healthy diet by limiting saturated fats, staying well-hydrated, and being mindful of vitamin K intake—especially K2 and leafy greens—if you're taking warfarin.
You should also be cautious with the use of ibuprofen (a type of NSAID), as it can affect platelet function and increase the risk of bleeding—especially at higher doses or with prolonged use.
You might want to speak with your doctor about regular ultrasounds to monitor for blood clots, as well as any specific dietary guidance.
Also, your daughters should see a hematologist and request a complete von Willebrand Factor (VWF) test.
@swalex Thank you for sharing this info. I've only recently found out that my grandfather and my father have this disorder. My father was recently hospitalized with both PEs and DVTs. Although this isn't the first time, this was the first time that he was treated based on the disorder. We found out that my (deceased) grandfather had it this past Nov (25) based on testing that my aunt did. My father is 82. I have concerns for myself as a woman seeing that estrogen increases risks. Also because I have two daughters and my husband also has European ancestry (although I don't know where from. Mine is German)
@swalex Thank you for sharing this info. I've only recently found out that my grandfather and my father have this disorder. My father was recently hospitalized with both PEs and DVTs. Although this isn't the first time, this was the first time that he was treated based on the disorder. We found out that my (deceased) grandfather had it this past Nov (25) based on testing that my aunt did. My father is 82. I have concerns for myself as a woman seeing that estrogen increases risks. Also because I have two daughters and my husband also has European ancestry (although I don't know where from. Mine is German)
@ybreyn411
Although von Willebrand disease (VWD) is one of the rarest diagnosed conditions, its symptoms are relatively common among Europeans. Therefore, I have gathered specific information on the topic.
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@rmd23, getting a clot or sclerosis everytime you have an IV is an issue. What does your medical team do to help reduce the risk of clot?
@robinpope2013, you can search for available clinical trials at Mayo Clinic using this tool: https://www.mayo.edu/research/clinical-trials
You can also contact a research coordinator with your questions. They may be able to help match you with a trial for which you are eligible.
Phone: 800-664-4542 (toll-free)
Robin, you certainly have been through several serious health events. How was recovery from your stroke? And 6 heart by passes, woah? How are you doing now?
Yes I'm so scared
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1 ReactionWelcome @mjthornton78. It’s pretty normal to be scared when you’ve gotten a new diagnosis, especially if you don’t know much about. It leaves you feeling very lonely. So I’m glad you joined Connect. There are a number of members who also have Factor v Leiden which is a blood disorder which can cause abnormal clotting.
I’m not sure what’s been explained to you so I’m putting a few links with information about Factor V Leinden for you to read.
~This from Mayo Clinic
https://www.mayoclinic.org/diseases-conditions/factor-v-leiden/symptoms-causes/syc-20372423
~Healthline.com
https://www.healthline.com/health/factor-v-deficiency
If you don’t mind sharing a little more of your story, how was your diagnosis discovered? Were you experiencing blood clots? Are you currently taking any treatments to help prevent abnormal clotting?
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3 ReactionsMy wife has it. It was thought to be a factor in the stroke and TIAs she's had. She was recently switched to Eliquis, which will hopefully eliminate the issue. Definitely ensure your medical team takes measures to address it.
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1 ReactionAnd I just had a major surgery and can't take NSAIDs or even my tumeric messes w my blood and there's an opioid epidemic.. so my pain just isn't a thing super fun cervical fusion w dysectomy on C5 and c6
Hi all,
I have Factor V Leiden as well. I have not had any issues but my late mother discovered that she had the mutation when she developed blood clots in her legs. I was tested and my doctor confirmed that I have the genetic mutation when I was about 40 years old. I informed both my daughters concerning the mutation but do not know if they inherited the gene. Any precautions or suggestions on supplements to prevent potential blood clots? I will be 70 in June.
Thanks
Liz
@lizkc56
Hi Liz,
I have both Factor II and Factor V Leiden. The main precautions include avoiding estrogen (such as in birth control or hormone replacement therapy), tobacco use, and prolonged immobility. It's also important to follow a heart-healthy diet by limiting saturated fats, staying well-hydrated, and being mindful of vitamin K intake—especially K2 and leafy greens—if you're taking warfarin.
You should also be cautious with the use of ibuprofen (a type of NSAID), as it can affect platelet function and increase the risk of bleeding—especially at higher doses or with prolonged use.
You might want to speak with your doctor about regular ultrasounds to monitor for blood clots, as well as any specific dietary guidance.
Also, your daughters should see a hematologist and request a complete von Willebrand Factor (VWF) test.
-
Like -
Helpful -
Hug
4 Reactions@swalex Thank you for sharing this info. I've only recently found out that my grandfather and my father have this disorder. My father was recently hospitalized with both PEs and DVTs. Although this isn't the first time, this was the first time that he was treated based on the disorder. We found out that my (deceased) grandfather had it this past Nov (25) based on testing that my aunt did. My father is 82. I have concerns for myself as a woman seeing that estrogen increases risks. Also because I have two daughters and my husband also has European ancestry (although I don't know where from. Mine is German)
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Helpful -
Hug
1 Reaction@ybreyn411
Although von Willebrand disease (VWD) is one of the rarest diagnosed conditions, its symptoms are relatively common among Europeans. Therefore, I have gathered specific information on the topic.
Understanding von Willebrand Factor (VWF), Factor II, and Factor V Leiden Mutations: Risks, Management, and Medication Considerations
https://swaresearch.blogspot.com/2026/01/understanding-von-willebrand-factor-vwf.html
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