Factor V Leiden Support Community Group

This is a group for anyone who has Factor V Leiden, a clotting disorder. Or people who know someone with this condition.

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Heart, Blood & Circulation
/ Factor V Leiden Support Support Group

Hello...

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Hi guys, my name is Amber & I am from Oklahoma! I am 20 years old & am attending Connors state college for my psychology degree :) I have recently been diagnosed with Factor V Leiden, (April 4, 2012); & it has completely changed my world! I had woke up one morning with my left leg HUGE & purple... Looong story short I had a blood clot from underneath my left knee into my abode men, I was in the hospital for 10 days (let me tell ya I bout lost my mind), they had put me in ICU for 4 on a clot busting machine which was so scary being in ICU at 20 years old. I recently, well little over a year ago, July 1, 2011, lost my daddy, he just fell asleep & didn't wake up, had no history of having factor five or not, so me being in the hospital was hard without him there, but I had my mom & stepdad & fiancé there every step of the way. While being in ICU they also diagnosed me with having Mayes Thurner Syndrome, ( where you veins are to small & blood isn't flowing back & forth like it needs to which is how we came to find out about factor V my iliac vein was stopping the blood from flowing back down to my leg which caused it to clot, they had to go in & put a stint in my belly to keep that vein open properly), when they told me I had those 2 things, & told me I would be on Warfarin for the rest of my life it was like a huge train had it me in the face & I was so scared... They were telling me all these factors & no more birth control (which I had been on for 7 years) ya know wait awhile to have babies... I was so set back & depressed for a few days.... & thinking about it now I see why I was so scared but I should have seen the greater in this, it's treatable ( and at the time they were just needing to get my INR where it needed to be) all I have to do is get my INR where it needs to be stay consistent in my vitamin K intake & I'll be okay, things could have turned out a lot worse & I'm so thankful God was watching over me while I was sleeping & that clot was forming in my body bc it very simply could have went to my brain, lungs, or heart! But now I have questions for you women that have factor v, I know I'm young & in college but I really wanna try for a baby... Ya know life's to short & having what I have is going to pass down to my baby where she'll be a carrier but that's something that will be dealt with in the time to come, losing my dad also has taught me a lot you can't take life for granted & I think with all my depressed moods & sadness if I could have a child of my own I would be so blessed. But I'm scared because you cannot be on coumadin & be pregnant & I'm just scared, is there something else they can give u to keepy your blood thin & something to protect the baby? I just have so many questions & concerns, being a mommy is something I want more than anything.
Anybody please fill free to talk to me, whether you haven't had kids yet or not, but I'm very concerned on knowing while having factor five what all do you have to do to protect your child while being pregnant?


Thank you, AJ
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Dear AJ,
I am 46 and was diagnosed a few months ago. It is very scary. I do not know of anyone in my family who had it. I too lost my Mom 10 years ago. She went in her sleep. No real cause. We will never know. I know this is a very scary thing. I still worry and get fearful. I am now back on coumadin. I was on injections for 4-5 months. They were very expensive and the Dr. finally put me back on coumadin even thought they consider me to be a coumadin failure. I got clots while being on it and at a therapeutic level. They put a filter in me and say it should hopefully catch anything big enough to cause damage. I have had 2 clots in my lungs and 1 in my leg. As far as the birth control, I cannot help you there. I do not need it now. I do have 2 kids who are both grown. I did have problems with my first pregnancy which now they say was probably from the Factor 5 Leiden. I had a premie that was 8 weeks early and weighed 2lbs 13oz. I guess our babies can be very low birth weight? Praying you find what will work for you. My Dr. said my children should be tested and asked if my daughter was on birth control. I told them she had an iud and they said that was fine. Hang in there and I will be praying for you!

Hugs,
Kathy
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hello
im new here i had been diag in 2006 with factor five been having some problems with my legs and knees at work
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Itsybitsy2566

Do you go to your Dr. regularly for check-ups? Make sure and let them know so they can check to make sure you don't have a clot again! Take care of yourself and we can chat any time! Hope you figure out what's causing your problems and can fix it quickly!

Kathy
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Hi AJ. We have two things in common, we're both FVL and we both have initials AJ (but my last initial is K). I'm sorry about your story. An important thing to note is that FVL has some benefits in life (if it didn't it would have been eliminated from the human gene pool in the past). The doctors tell me that my PE was unprovoked (in that I hadn't done any high risk things prior to my PE) and thus conclude that the reason for my PE was FVL. But I think (note, I'm **not** a doctor, and so this is just what I've worked out for myself) that having FVL makes you more likely to get a blood clot, and so there were things I was doing prior to my PE that contributed to me getting it. (e.g. driving non stop for 3 hours, not drinking much water while driving, and sitting pretty still in the car is a risky thing to do when you're FVL). What I'm saying is that I think that lifestyle changes can help considerably to reduce the chance of a PE. So, if in the future you want kids, then if you plan it carefully then it should be possible. What you'd need to do is get yourself fit and healthy prior to trying for a baby, then during pregnancy eliminate as many other risks as you can while you are not on the Coudamin. What I'm saying is that I think there is hope, you just need to be more aware and more careful. As I say, I'm not a doctor. Stay positive and very best wishes. Andrew.
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Hi everyone, I'm new here to the group. I'm heterozygous FVL positive. I was diagnosed in Nov 2012 after having an elective surgery and being on birth control (nuvaring). I developed a DVT and bilateral PEs. My clots were provoked by the surgery and birth control. I wish that doctors would test for FVL before putting ladies on birth control. I see a hematologist on a regular basis. Hormones are out of the question. Anything with estrogen or progesterone he said is a NO for me (i'm sure everyone's doctors have a different opinion). Hormones increase your chance of clotting 35 fold for a FVL positive woman. I was never educated on FVL before I had my clotting episode and I'm a Registered Nurse! So many people have great posts here! If you do any research on FVL, from what I've gathered....FVL doesn't just choose to rear it's ugly head. Most of the time it is provoked by multiple factors. For example, immobility, long car rides, dehydration, long plane flights, surgery, birth control, tissue damage/trauma, cancer, obesity, etc. I'm working hard to decrease my risks for developing another clot. I'm almost 10 months out from my clotting event and still recovering. The recovery process is a slow individual journey. I wish you all the best with your recovery and journey. It's nice to have a site to go to with other people's experiences!!
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ps. I forgot to say to Amber, my hematologist said that pregnancy is possible with FVL. you will just be considered "high-risk" and monitored more closely. Also, you can't take Coumadin when pregnant so most doctors have you take Lovenox, a subcutaneous injection. It's a low molecular weight heparin that will protect you and your baby during your pregnancy. It's safe for the baby also. Due to the strong FVL history on my mom's side and my dad's side, I've decided not to have children. We plan to adopt. BUT many FVL positive women have had successful and healthy babies!! THERE IS HOPE!!!!
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