Hi my name is Cathy Westveer. This is my story about how I found out how I have Factor V Leiden heterozygous mutation. Back in 2002, my daughter, Britaney was about four months old; I was on the pill, and smoking. I started having left calf pain. I went to the doctor and the doctor ordered an ultrasound. Everything came back fine. A week went by the pain and swelling got progressively worst. My left leg was at least two times the size of my right leg; I was starting to have a hard time bearing weight on it. At that point, my husband, Ken took me to the hospital; they did not order an ultrasound because the one I had a week before that was negative. They diagnosed me with a strain/sprain and put an ace bandage on my left leg, and send me on my way.
By the end of week two I could not bear any weight at all on my left leg. Ken was pushing me around in a wheel chair. Beyond frustrated, and in immense pain, it felt like someone was constantly jamming a knife in my left leg and hitting my bone with it, that is the only way I can describe the pain. When I hit week three Ken was getting frustrated and really worried, he took me back to the doctor, I put up a fight, because I was worried my doctor would think I was a hypochondriac at this point. My left leg was at least five times its original size and many different colors. I was in so much pain and having a really hard time nursing Britaney.
In our PCP’s office I was sitting in the wheel chair holding Britaney in my lap, my doctor looked at my left leg and said I might I have compartment syndrome. He told me for the length of time I had the symptoms and how bad my leg looked if that’s what it was, I may never be able to walk again. I sat there balling my eyes out, holding my daughter thinking to myself, I am only 26, and how could it be that I may never walk again? He immediately sent me to a Vascular Surgeon, Dr. R., he said the same exact thing my doctor said, however he ordered another ultrasound, his ultrasound tech did an ultrasound. And to my surprise, shock and horror, I had multiple DVTS the entire length of my left leg!!! Dr. R. asked me if I had chest pain, or a hard time breathing? I said no. He wanted to admit me; I said only if I can have Britaney with me. He said no! Ken and him talked a little bit, and agreed to let me go home, 72 hours bed rest, can only get up to go the bathroom. He put me on Lovenox and Coumadin. And for three weeks, he was having a lab tech came to my house every other day to draw blood to check my PT/INR. He also told me that I still had a chance of not being able to walk again, and the damage to my veins was permanent.
My PCP ordered a bunch of blood work! And they discovered that I have Factor V Leiden Heterozygous mutation. My PCP sent me to a Hematologist, Dr. K. During my follow up with Dr. K, he suggested me to not have any more children, but if I did I needed to talk to see him first, to talk preventative measures. About two years later we decided to have another baby. I went on Lovenox every 12 hours. We got pregnant. I had some bleeding and panic. I have had three miscarriages before my daughter, one of them I am pretty sure was a result of Factor V Leiden, because the baby had a heartbeat until 12 weeks, but that was before I knew I had Factor V Leiden Heterozygous mutation. Come to find out I had placenta Previa; I had to go on bed rest for a month. But other than that the pregnancy ran smoothly, other than the fact that my abdomen looked like a road map from the Lovenox shots, so many nasty bruises, definitely not a glamorous pregnancy.
Three days after Kenny was born, even though I was on Lovenox, Heparin, and Coumadin, I had left calf pain. Low and behold I had a surface clot. At this point my hematologist said, no babies, too much of a risk! He also told me I will never be able to go off of Coumadin. I had a hard time for years with this! But I am now okay with it. I have two beautiful children!! Two Factor V Leiden Heterozygous mutation miracles.
In 2013 I was really having a hard time with keeping my PT/INR’S where they were supposed to be. They were all over the place. It was getting to the point that the phlebotomist who was drawing my blood weekly told me she was going to call my doctor and suggest her to have something put into my veins, because they were not letting the blood out anymore. And thanks to the Factor V Leiden groups I found on Facebook, including Forever Deborah, I heard about the self- tester for PT/INR. I brought that to my doctor’s attention. My doctor refused it to let me have it. After a good argument she broke down and told me she was going to call one of her fellow Hematologists to see what he advises! Little did she know she called my Hematologist, and he was okay with the self-tester but he had something far better for me.
A new blood thinner, Xarelto, that was just recently approved for Factor V Leiden Patients, the only down fall with this new drug they still have not come up with an anecdote for reversing hemorrhaging, but there are not diet restrictions, and no blood work! I have been on it since March/April 2013, so far so good! And finally living somewhat of a normal life with Factor V Leiden Heterozygous mutation!
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Hello,
Just recently I found out that I have Factor V Leiden- Heterozygous. I do not plan on having any children (I’m in my early 30s)- my husband had a vasectomy several years before we met. My doctor basically told me just to watch out for swelling and to notify emergency personel if I have to have emergency surgery. As for my health- I could stand to lose a few pounds and smoke about 1/2 a pack a day (both of which I know I need to work on). Is there anything else I need to know?
Hello and welcome to BCRN. Have they not put you on blood thinners? Typically Factor V requires lifelong anti-coagulation (from what I know) because the risk of clotting again would be greater than someone who does not have Factor V. This may also depend on whether or not you have already had a clotting incident. I would ask for a second opinion in this case (if you have already had a clot and you are not on continuing medication). Knowing your risk, history and yes, keeping informed of your health and circumstances is very important. I would familiarize yourself with the signs and symptoms of PE and DVT just in case. Knowledge is power and could save your life in this situation of a clot. Here are the symptoms – http://bloodclotrecovery.net/signs-and-symptoms-of-a-pe-or-dvt/
Hi! Are you on any blood thinners? I suggest quit smoking.
Hi thank you so much for your comment. I found out I have Factor V Leiden after getting tested at the urging of my mother (she has it)… Neither of us have had any blood clots (yet). My mother found out because she was undergoing treatment for another issue, and when trying to diagnose it, docs tested her for factor V.
I will definitely read up on all of this. Thank you so much!!!
Thank you for the update. I do think anti-coagulation may depend on if you experienced a clot. I hope you can find the best course of action and remain clot-free! Take care.
I was diagnosed with Factor V at 39 weeks pregnant, almost ten years ago. I had two blood clots pass through my lungs and miraculously, I was able to deliver the following week, a healthy 8 pound baby boy. I had been misdiagnosed as having kidney stones and sent home from the hospital earlier in the pregnancy. Thankfully, when I arrived at the hospital the second time, the doctors refused to let me leave until they discovered what was wrong. I was having severe pains in my left side and finally an MRI determined the cause. After I delivered, I was also advised not to have another child, and my husband got a vasectomy. I did not have to be on medication, but then yesterday I tore my Achilles tendon and was told I’d have to be down and out for another 8 weeks. Now I have to have injections twice a day in my stomach to prevent the clotting from occurring. It is normally a harmless condition unless there are extenuating circumstances, but I seem to be having quite a few of those! Here’s to miracles!
Thank you for sharing your story! I have had 2 MCs this year and was just diagnosed with FVL heterozygous and told to take Lovenox shots as soon as I get a positive pregnancy test. Of course, this makes me a tad nervous since both of my MCs were early (one at 9 weeks – but no growth since 6 weeks and the other at 5w5d – I had only gotten a positive pregnancy test 1 week earlier). My question to you is how far along were you when you started taking the Lovenox shots with your second child? Thanks again!
Hello I’m 37 years old and just found out I’m also Factor 5 Leiden, it’s been tough to deal with and I’m glad I found this page. I hope to learn and be able to ask questions here too for support and help. I have DVT, PE, also bicuspid valve in heart and a Arotic Anerysm. My leg always hurts and try to walk on and off, my right arm hurts a lot too recently and no one seems to think anything it’s been 4 weeks arm pain, should I be concerned?
Hi, I was just recently diagnosed with the heterozygous for factor v Leiden polyymorphism. I have had several surgery’s on my neck lower back. I started developing blood clots three to four at a time. I also have a spot on my liver and had several polyps removed from my colon. I was going to the dr for a year showing her my bruises from my clots and she never did anything. She also told me to not worry about the spot on my liver that everyone gets them.
Hello!!! The relief I feel to have found another lady who’s been through almost exactly what I’ve been trough!
At 16 I developed a massive DVT a bit larger than yours mine went from ankle to groin left leg (even the same leg) I have the one copy gene FVL. His was caused by ether the pregnancy I had no idea I had or the fact I was on the oeatrogen based pill (that failed me obviously) I chose to terminate the pregnancy as I was so young and so poorly with this massive DVT. I was on fragmin (uk Lovenox) injections twice a day and then once the leg started looking normal ish they switched me to warfarin tablets which I was on for a year I then came off. I had no clot issues from that moment on!
So to present day, I’m 26 I have one daughter and have been blessed to never have had a miscarriage and my pregnancy and birth blood wise was perfect with her I was on fragmin injections once daily as a preventative measure and on them again for 6 weeks post partum. I am now pregnant with our second to find at our 20 week scan I have a low lying placenta which could move but could also cause placenta previa! I’m terrified! Especially at being on blood thinners and having the increase risk of bleeding etc with PP. I’m also scared about the possibility of a c section.
FVL sucks. We won’t have anymore children now we are too terrified we are blessed to have our gorgeous little girl and al being well our baby boy who’s due in June will be happy and healthy and I will be okay. I’m just scared to get placenta previa and scared of the surgery to have him. Any advice would be lovely!
Thank you for sharing your story!
Naomi – Cornwall England
Hello my daughter in law has favor v liden h. I recently just found out iam very worried she has this because her mother and father has it. Heres what worries me my brother was a hemophilic he had facor 9. Will there be any chance of her getting pregnant and if so will it be dangerous for her and the baby? Please let me know
I didn’t find out about having Factor V until I hurt my left leg and was on crutches two years ago. I developed a DVT in my other leg. I was put on Warfarin. No one tested me. Later I had to have a knee replacement and was forced to have IVC filter put in before they would do the surgery.
Two months later the IVC doctor told me he didn’t know how to remove the filter. I went to a cardiologist at OK Heart Hospital and he ordered the tests. Can’t take Xaeralto or Eliqis so stuck with Warfarin.
I’m 66 years old. 1 miscarriage and three healthy births.
Looking for any kind of hope, knowledge, or encouragement. Our hearts are broken.
I was just diagnosed with Factor V Leiden after blood tests this last week. May 31st I had knee surgery to repair a torn miniscus on my left leg. I am normally a very active, physically fit person ( runner and weight lifter). I am 48 years old. After my second PT session on June 4th, my left calf and thigh (back of it) began to hurt and swell. The next day I called my surgeon and they had me come in for a sonogram that same day. I did and they determined I had two blood clots in my leg and sent me to the ER. Once there, they took me directly in and asked me if I had any shortness of breath and I told them that I had experienced that off and on over the last couple of days but thought it was just because I have not been able to exercise. They sent me for a cat scan and determined that I had several blood clots in my lungs and admitted me. They put me on eliquis and told me to follow up with a hematologist. The hematologist did all kinds of blood work on me and advised me I had one mArker ( from one parent, not both) for Factor 5 Leiden. I am now one month from the onset of the blood clot diagnosis and one month on Eliquis, the pain is no where near what it was almost non existent, but the swelling in my calf and ankle still arise if I spend anytime on my feet. I do use the compression stocking when I’m moving around. Will the swelling cease at some point. I miss being active.
I hope I didn’t post twice couldn’t tell if it went through the first time. I just recently found out I have Factor V Leiden after blood tests were take when I gout out of a month long hospital that was only supposed to be 3 days. I did not know I had it before the surgery and as far a my parents knew they didn’t know of any kind of genetic disorders like that running in family. Mind you I have delivered 4 babies and one by cesarean section with no problems. I had 2 open back surgeries 10-11 years ago and a gastric sleeve 5 years ago with no problems of blood clotting. I do not smoke and was told IUD’s don’t really give enough hormones off. Well recently I went in for a spinal fusion because my whole lower back had collapsed. I had several discs missing that needed to be replaced as well. I assumed this surgery would go without a hitch as usual like my others did. Boy, I was wrong. During the surgery I developed a blood clot in the iliac artery they took out of my thigh. After surgery I was told and it scared me a little. While resting my left leg starting swelling, getting extremely cold,Could not move toes,lots of tingling and numbness. I complained to nurse in room I could not feel my leg and it was very cold to the touch along with the tingling. She kept telling me that was normal after surgery especially since I hah had a blood clot. I knew something was wrong in my gut and complained until. I had to complain for more than a 1/2 hour too. She went and got a higher up nurse and doctor. They immediately saw it and felt it and told everyone to send me straight to cat scan for my leg. Well what do you know I now had another blood clot under my knee in the popliteal artery and was rushed to surgery. All this caused my month stay along with the saph infection I got. Doctors kept telling me it was unusual to get blood clots like that in main arteries like I did. Usually they were in veins. A month later I am still dealing with the fall out from second blood clot. They had to slice my leg open above my knee to below the knee. It is a good 6-7 inches long.They had to do that to fix where another surgeon accidentally nicked my main tendon in leg when getting to blood clot. Main tendon had to be well stitched up. I get a lot of pain. I may have nerve damage in my left foot and leg. I can walk with a cane very short distances but only a walker anywhere else. My wound Dr is hoping the nerves will grow back. It would be nice not to have my toes always feel asleep. The inside of my lower calf has no feeling when touched. If in six weeks it is the same I have to see neurologist. I wish I had know I had this before hand. It scares me to even think about having any other surgeries. I told my parents today they needed to get tested along with my brother and sisters. I will need to test my kids as well to see if they have it. It is considered an inherited genetic disorder. I hope my kids don’t have it. It has been a nightmare for me. Trying to find ways to deal with it and worry it will happen again
I was diagnosed with factor V leiden 4 years ago when my husband had taken me to a hospital called LBJ, it was my last hope after several hospitals sent me away, 2 months of pain and agony and almost death. I had been vomiting and not able to keep anything down with bloody diaria, I couldnt make it to the bathroom without shitting blood and having to go every 15 min. The doctors said they couldnt help that I had to go to a GI doctor. I just got insurance and couldnt afford to go because i still had to pay a 2000 dedictable first. The LBJ hospital took me in and admitted me immediately. My vitals had been normal but they said i was so yellow and thought i needed other tests done that i couldnt get the other hospitals to do. I only remember the first night and i guess after that i went into a coma. I woke up 1 and 1/2 months later (3 months total hospital stay) to find out I had ulcerative colitis that caused a hole in my colon and had to have it removed so now i have an ileostomy. They were so focused on getting my health up, being malnutritioned and extremely anemic, that while in my coma i got a DVT in my right leg, my husband noticed my foot black while visiting and it cut off circulation to my foot causing gain green in my toes. They put me on blood thinners, did a blood test and discovered my blood disease. (So many blood tests and never testing for factor 5 until my DVT) They couldnt do surgery because i was not well enough for surgury so they had to just let it take its course. End results I had to relearn to talk( but I was on life support and had to have a Trek once i woke up because i was having issues breathing on my own and they were afraid of brain damage if i was on life support to long. I couldnt walk because the blood clot caused gain green that ate away all the skin and muscle tissue in my foot and toes. The toes died, i had to literally watch them fall off over the course of 2 years.
They told me I had to be on warfarin for the rest of my life, however I hit hard times since I couldnt get on medicaid right away and disability took 2 years so i quit using it due to not being able to see a doctor monthly to check my INR. I have now been off bloodthinners for over 3 years. I’ve been to several Dr’s, some told me I need to be on them since I’ve had a blood clot and that its only a matter of time before something else WILL go wrong. However my last Dr said that my blood tests are great and unless I have surgery or plan to be on bed rest exc. that i chose wisely not to continue blood thinners. I was always brusing everywhere while on it and being natually anemic it made me a zombie. I had to have 1 surgery several months ago and it was to have several bone fragments romoved that had gotten left behind. They gave me lovanox for two weeks after surgery and now noone can even tell that I’m missing my toes even when I walk.
After my surgery 4 years ago, “my ileostomy,” they told me would be reversable, my Dr now tells me that i have had some small intestines removed also and that I would most likely not be able to be put back together however I haven’t seen a GI since my surgery. My condition sometimes is so difficult to deal with and I am amazed at how many people have factor 5 and have had serious health issues and yet there is nothing out there about factor 5 and even worse they wont test for it unless requested or a medical problem is presented. Apparently its too expensive to test everyone and theres not enough people with FVL to do research on why we have it…..I have never told my story until now.
I am a 79-year-old male who has lived with recurring blood clots for sixty years. Over that time, I have experienced numerous superficial and deep vein clots (thromboses) in both legs, numerous pulmonary emboli, blood clots in my right arm, and heart attack resulting from a clot.
For most of this time, I was on the blood thinner Coumadin (warfarin) and had no adverse reactions. Being on Coumadin for that long, I knew what to eat, what to avoid and how to manage my eating to ensure a stable INR between 2.2 and 2.8. When it was necessary to have a medical procedure, I used Lovenox as a bridge between going off and on Coumadin.
In the early years, my doctors would put me on Coumadin for a few months and then take me off. In 1974 I suffered my heart attack and the doctors decided that I needed to stay on a blood thinner for life. At that time, doctors and scientists did not know about Factor V Leiden. It was only recently, early 2000, that Factor V was isolated as a genetic mutation contributing to clotting issues.
To this date I have never been tested for the Factor V Leiden mutation. Both of my daughters have been and showed positive. One daughter, unfortunately, has experienced numerous DVTs and PE. This daughter was on Coumadin but could not get her INR to stabilize, so about five years ago she switched to Xerelto and has had no problems with either the medicine or clotting.
I went for about thirty years without experiencing a significant clotting event. Then about eight months ago I had a minor medical procedure. Like in the past I used Lovenox as the bridge before and after the procedure, but unlike past experiences a clot (DVT) formed in my left leg. I noticed that something was out of whack because I could only walk on a treadmill for about three to five minutes. Therefore, I went to my doctor who referred me to the hospital for an ultrasound, which confirmed the DVT. To obtain quicker protection, the ER doctor and my doctor switched me to Eliquis. I have continued with Eliquis and somewhat like not having to constantly go for an INR test.
So how has the clotting problem (Factor V Leiden) affected my quality of life over these last sixty years? The simple answer is, it has not. Over the years I have played racket ball, been skydiving, water rafting, down hill skiing, and working out at the gym usually three times a week. I just returned from a week skiing in Northern Italy in which I skied for six straight days for five to six hours each day. I do almost anything that I wish.
So, in my opinion, having Factor V Leiden and taking blood thinners is not necessarily a limiting factor to your activities. What is needed is using good judgment while engaging in such activities; such as wearing helmets while skiing, biking, rock climbing, hiking or other such activities. Also, remember you are on a blood thinner, so wear a medical alter bracelet or carry a card in your wallet indicating all your medicines and that you have Factor V Leiden as well as other significant medical issues.
Bill
Thank you for posting this. I developed a blood clot when I was on the pill at age 18. Not one doctor tested for Factor V. They just said it was a “fluke”, but when I get pregnant later in life, I would need to do preventative heparin injections. Had 3 babies doing those injections – no problem. Got pregnant with 4th kid, but developed clot before injections started at 8 weeks. I had been pregnant with twins and it took my estrogen level off the charts. Miscarried one of the twins. (Only then, did they test for and discover I had Factor V). Was told to terminate the pregnancy, but chose not to. 8 months later had my very healthy 4th child and she is amazing and is now 17 years old. Unfortunately 2 blood clots in same leg 20 years apart now has developed into Post Thombotic Syndrome. In a lot of pain pretty much every day.
One of my daughters is expecting her first child and we are waiting for the Factor V test results. She was never on the pill due to my experience. Praying she doesn’t have it.
Was diagnosed at 56 (numerous blood tests) after the doctor found a blood clot in my eye causing a big blind spot. I only know this because I read the online chart. The doctor never called me to inform me of this!
Does anyone else have painful fingertips?? Mine feel like I caught a baseball bare-handed.
In 2004 I was diagnosed with Factor 5. I was placed on birth control pills following a miscarriage at 6 months. I did develop a massive clot in my left leg from the hip to the ankle (all before the test results came in). I had to learn how to walk again and was placed on warfarin. I did have two health pregnancies with the use of lovenox. Many years down the road I developed additional clots. I have lupus anticoagulant, factor 5, s factor levels and several other levels are not normal. I have been in many forms of thinners. Xeralto was by far the worse as I developed three clots while on it later I discovered through my pulmonologist it was not developed for chronic clutters like me. I have had 4 clots in my left leg, 1 clot in my right leg, 2 clots in each lung, placenta clot. Everyday is a gift. I’m currently taking high doses of warfarin to keep my inr in the desired range. Last December I was also diagnosed with Lupus. Keep fighting for your health. This has a way to keep changing. Keep talking to your doctors keep a journal of changes and pain. It took a year to find out before I started to feel better.
I too have factor v. I’ve had phlebitis (early 90’s), major DVT/PE that almost killed me (2005) and a subsequent superficial blood clot in 2010 when I came off coumadin for a medical procedure. Went on xarelto in 2010. It has been a godsend. No more testing. Just make sure you take it every day. Only drawback is the price.
I, too, have one copy of FVL. I had a left hemisphere ischemic stroke at the age 46, which is what brought my neurologist to test for autoimmune and blood clotting disorders. I never had any pregnancies or miscarriages that I know of. In my early 20’s to 30’s I took birth control.
I was a teacher for 17 years before my stroke occurred. Although mild, my stroke has caused some residual effects. I am now on Plavix.
I am so glad to come across this article. If anyone knows of a group for FVL for people who’ve experienced a stroke with medical expertise, please share. I am constantly on the lookout for a support group of some kind. I am SHOCKED at the number of people who have been diagnosed with FVL and the secondary causes it has on us. There needs to be more advocacy and study for FVL patients.
I found out about a year ago that I have Factor V Leiden. I had been struggling with terrible pain in my left leg that started in my calf, almost felt like a pulled muscle. The pain would move around my leg and I felt like I might be suffering from sciatic nerve pain. I flew across the country for work and started having shortness of breath and a dry cough. One night, I felt my leg starting to swell. I decided to go the the ER and was given an ultrasound on my leg. I had an extensive DVT in my left leg, from mid calf to mid thigh. I was put on Eliquis for 6 months and now I take a baby aspirin every day. I stay active and make sure I get up to stand and move my leg often. It still bothers me a little, but I have started running again. I wear compression socks, eat right, and keep my weight down. I don’t smoke. I did have a miscarriage back in 2014 and no babies since. I’m 34. I’m told it may never get back to feeling 100% better due the damage to my vein, but I monitor it daily. What a wild card we all drew, but if you have it, living life to its fullest is very possible, it just may take a little extra work and care.