Living With Factor V and Pregnancy
89How it ended my pregnancies
For those of you that don't know, Factor V (most commonly know as Factor V Leiden) is a blood clotting disorder. It it the most common hereditary hypercoagulability disorder.
Factor V is not a condition that you just "pick up" while you are aging. It is a hereditary disorder passed down the family tree. Its also a sneaky and tricky disorder to live with. I am 27 years old and I have only know that I have this disorder for about 7 months. Like most women who have the disorder, I found out after my second miscarriage.
When I got pregnant for the first time in February of 2008, I was scared but ecstatic. I never thought I wanted kids, but knowing that I was going to have one whether I was ready or not seemed very exciting to me. I went to my first doctors appointment and got the required blood tests and peed in the required "every visit" cup. All went well at the first visit. The second appointment was to be my first ultrasound, just to make sure everything was going okay. I was so excited when I got there. I was going to see my baby for the first time. We waited and waited and when it was finally our turn, we get in the ultrasound room and OH NO...the ultrasound machine is broken. Way to rain on my parade. We left greatly disappointed, with another appointment scheduled a couple of weeks away.
When my next appointment finally arrived, I was already 3 months pregnant. I could not wait another second to see my baby. We get back into the ultrasound room, I get all of that cold gel smeared on my stomach and we sit back to watch the show. But things did not go as planned. The ultrasound screen was empty. There was no more baby.
I got the usual "these things happen"..."it was nothing you did"..."this is not uncommon"..."just be glad we caught it now". Like any of those condolences really help. Since I was 3 months along and my body was still progressing in the pregnancy, I had to have a D&C done. That is a story for another time, but the last thing I wanted to be asked when I was getting ready for surgery was "do you want to keep the remains". HELLO!!!
It took a while to get over that first miscarriage, so when I became pregnant again in November, I was completely overjoyed. I did not waste any time telling my friends and family, and before I was even 6 weeks along I had my first doctors appointment. Of course I was a little nervous given my past experience, so I asked for all precautions to be taken. Extra blood test, extra ultrasounds...everything. Apparently I was not considered that much of a risk so I was given the minimum care that every other pregnant woman is given.
This time I only lasted a month and a half before I miscarried. Let me tell you, after the second one, all the consoling in the world will not get the guilt out of your head. You know in your heart that there was nothing you could have done, but your head will blame and hate your body for the next 3 months or so.
Apparently, after your second miscarriage in 8 months, you start to turn heads at the doctors office. I was sent in for numerous rounds of blood tests and urine samples...everything they could think of to see what was causing my body to reject pregnancy. On January 15th, they called with the news. I was diagnosed with having Factor V Leiden. During my first doctors visits they had asked me numerous times if I had any blood clotting disorders in my family. I had never heard anyone say anything about it, and my sister and mother and everyone else in my family had all had healthy babies, so I assumed no. WRONG. It is very dominant on my father's side of the family. My grandmother just had surgery and had to be put back in the hospital because of blood clots. I'm not sure about you, but I think this is information that would have been nice to know, oh I don't know...after my FIRST miscarriage.
Here's a tip. If you get diagnosed with this disorder, stay off the internet. It will do nothing but scare you to drinking. I have heard stories from people who have had healthy babies, to stories of people who have had 2 stillborns, both after their 7th month. Talk about making you want to get your tubes tied.
According to my doctor, women with this disorder have healthy babies all the time. This can happen simply by taking 1 asprin every day, or getting self-injections of heparin in your stomach daily. I have to schedule a meeting with doctors in August to see if I'm one of those lucky few.
If you live with this disorder or know people that do, please share your stories.
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I cannot believe I have found a website with women going through similar things that I have gone through. My name is Jamie, and I have Factor V. I was diagnosed with this after a stroke at the age of 18. Way to find out right? Luckily I am alive and well, and after becoming pregnant in May of 2007 I began daily shots of lovenox. I had preterm labor with my son but was able to hold off and give birth at 39 weeks to a healthy baby boy! I am now 26 weeks with my second child, a little girl and so far everything is going smoothly. I am still scared, well more terrified than anything, but as long as I feel her move I know we will be fine. If you have this condition, there is hope out there. Talk to your doctors, do your shots everyday, remain as stress free as you can, and enjoy your pregnancy. To those of you with such bad luck with this disorder, I wish you ALL the best. Just know it will come in due time, as mine did. You have to have faith, and eat right and take your medicine most important of all. I only have the one disorder, not both, but it is just as scary for me. Hearing all of the things that can go wrong, from growth restriction to stroking after delivery. I am scared, but I have hope, and THANKYOU to who ever started this forum. It is amazing and you guys have no idea how much you have already helped me in so many ways!
i was diagnosed over a year ago at age 34, after having over 10 misscarriages between 2 separate marriages. i have an 18 year old, my first born. there are no words to make you feel better or feel as though something is wrong with you after that many times. i am 6.5 wks pregnant now and absolutely terrified. i am starting blood thinners next wk and have no idea how i'm going to do this. i am terrified of needles, so to give myself a shot in the stomach makes me want to pass out! looking for a shoulder......
I found out that I has factor V Feb of 2008. I was rushed to the hospital because I was having trouble breathing,I was diagnosed with a Pulmonary Imbolism ( blood clot in the lungs).I had been taking Birth Control for two months prior, which is what caused the clot. After tests were done the results showed that I had Factor V. My husband and I were thinking about trying to have a baby, but I am allergic to heprin I had a heprin induced clot while in the hospital for the clot in my lung. Is their other alternative anticoagulant drugs besides heprin you can take during pregnancy?
I am 18 years old and have had factor 7 defiency my whole life though we only found out about it when I was 14 we always wondered why I had soo many nose bleeds and why they lasted for hours, then when I got my period at 10 I bled for 8 days straight and heavy bleeding all 8 days and I would get my period 2-3 even 4 times a month. Anyways they told me I should never have kids because of the danger of bleeding during birth, well I am currently pregnant and I've got roughly 4 weeks left till the due date and baby Bella is just fine I had a few complications early on in the pregnancy which put me on bed rest and a bunch of medication ( safe for the baby) they put me on folic acid 5 mg, vitamin b6, vitamin b12 injection once a month, iron and of course docusate because iron makes you constipated, then just my regular materna vitamin and diclectin so every day I take about 5-6 pills but they say the baby is perfectly fine and before we leave the hospital when I deliver she will have blood tests done to make sure we know if she has it or not hopefully not.
I have a healthy almost 3 year old son and had a perfect pregnancy for him. When we tried for our second we got pregnant right away...unfortunately that pregnancy ended at 10 weeks in a miscarriage. We conceived again after one cycle and that pregancy was ectopic. After going through tests, I have been diagnosed with factor v leiden. The hematologist says he is not sure that is what caused my miscarriage and ectopic and says that going on blood thinners once I get pregnant again would be my choice. I am leaning toward doing this as a preventative measure but would appreciate any advice...this is so frustrating given the fact that my first pregnancy was fine. Thanks for listening
I never knew that i had Factor 5 untill my doctor tested me for it cause my mom has it. Im 24 weeks pregnant and my doctor had just put me on lovenox injections in my stomach. Does anyone think that this is a bad idea cause ive never had any problems before with clotting?
Melissa...no, it is probably a safer idea. When I become pregnant again, I will do the injections as a precaution. They will not hurt you or the baby and will help to prevent clotting that my cause miscarriage or you to become ill during pregnancy. I had a healthy first pregnancy and no problems with clotting, then 2 miscarriages that MAY have been caused by Factor V....I am more than willing to take the shots if they bring me a healthy baby....
Hi Im Jodi,
I also have factor V leidon, I found out at 16 with a blood clot on my right lung, I got this after taking the conraceptive pill. Im 25 now and desperately wanting a baby, I visited my GP who said not to have daily injections and just see what happens?! Im really not happy with this and so so so so worried!!! I think about it constantly, I dont wanna get another clot, I was very lucky to survive the last!!! Why are they telling me this? Im lost with what to do next :(
Jodi- You definitely need to find another doctor!! I lost my mother, father, uncle, and aunt to this disease. I have had it all my life and have been on Coumadin therapy since I was 16, I am now 27. If you have already had a clot, then you need to consider heparin or lovenox during pregnancy without question. I highly recommend getting a second opinion. Your risk of a blood clot more than doubles when you become pregnant due to hormone changes. Good luck!
I am a grandmother and mother of three children, troublefree pregnancies, no miscarriages but a DVT after the last birth 35 years ago. Two teenage grandchildren from my eldest daughter, full term plus but pre eclamsia with the first child only. My youngest was diagnosed with factor 5 at 12 weeks and put on baby aspirin followed by a healthy full term girl 2 years ago. I have since been diagnosed with factor 5 and also my eldest daughter. The saddest part is the two miscarriages in the last year suffered by my daughter who desperately wants another baby. If I look back my mother had no problems with me but two m/c s afterwards followed by a pre term deaf and mentally handicapped child, then again another m/c. Probably the aspirin protected my little granddaughter but we saw the heartbeat at 6 weeks of the last baby and it was dead two weeks later. My daughter blames herself and wishes she had taken aspirin but the hospital said it wasnt necessary as her last birth was fine. What famous last words they were. 35, a slight weight problem and no where near so active as I am, funny the young tend to forget what legs are for. Anyway she`s off to a specialist now and taking exercise so, hopefully she`ll have another healthy baby.
I am dignosed with the opposite. I was diagnosed 2 years ago factor V deficient and not leiden either. My blood dont clot at all. I was told this is one in a million this disorder. I am still going for numerous tests, but now I am pregnant 9 weeks with my second child. I am so afraid something is going to happen. My doctor has scheduled me to meet with the hematologist that he works with at the hospital. From here on we just pray everything goes well.
gabbysmom26- maybe you have an inhibitor it sometimes happens when you get pregnant, my father had one and he was bleeding and clotting, his was a factor8 inhibitor and there is meds to take of it. I was dx with factor V today and was wondering if I should even try to get pregnant?
Hello All, I just found out that I have the Factor V Leiden today and am going to see a hematologist on Monday. I am 38 years old and have 3 boys, 13, 9, and 8. I had a miscarriage between my first 2 and then all healthy pregnancies with all of them. This is my 2nd marriage and my husband’s has no children yet. Recently I was pregnant again and at 18 weeks we went in for an amnio and our baby had no heartbeat, we were devastated, we did not expect at 5 1/2 months pregnant not to see a heartbeat. I had to have a DNE which is a little different than a DNC because of the size of the baby. Anyway my doctor, my doctor told me about the Factor V Leiden that she found in my blood and I am confused and have lots of questions for the doctor. She said I got it from my parents or one parent because it is pass in our genes, but is it safe & treatable, am I at a higher risk for a miscarriage or defects or my health? Also I thought I was better with things, this happened on August 19th and its been up and down with emotions but I actually felt better when I found out on Monday and now its Friday and I am concerned, about my health, future baby health and will I get pregnant again just got my first period (that was upsetting too) And when I stopped being upset my husband feel apart ? he is so sad I feel so lost I can’t wait for this time to pass any advice cause we are really hurting ?? Please email me, OAMelaBela@aol.com
Hi Ladies,
My name is Jessica and I also have factor V. I found out I had the disease 9 years ago. I thought I had pulled a muscle in my leg and over a course of a week I could barely walk. I went to my doctor who then informed me I needed to head to the emergency room right away for an UltraSound. Once I got the UltraSound it was discovered I had a deep artery vein blood clot, which led to a week in the hospital, an IV of morphine and injections of blood thinners. Boy was that the last thing I expected to happen to me. After my stay I still had to do shots in my stomach for two weeks and then a few months of being on warfarin (generic of Coumadin).
In February of 2008 I found out I was pregnant. I knew I would have to go see the Hemetologist because of my Factor V so once I seen him he prescribed Lovenox shots for the rest of pregnancy. I took a shot one a day and a baby asprin for my Factor V. I never had any complications throughout my pregnancy and I have a healthy little boy who will be 2 next month.
After reading some other stories I just want you ladies who may be pregnant or thinking aboout becoming pregnant that with medicine and the right doctor you can have a healthy pregnancy. My husband and I are thinking about having another child and I know everything will be okay as long as I am taking care of myself and the baby the way I should be.
Hello to all of you. First of all, all you ladies are in my prayers and thoughts.
I just had the year anniversary of my 20 week miscarriage. Of course we were, and still are devastated. We conceived through IUI on the FIRST TRY. When the results of what happened came back we found out that I have one mutated gene of Factor V and they found a blood clot on my placenta which could have been the result of Factor 5. Since then it's been a long year. We have tried 7 other cycles of chlomid and the IUI procedure with no results. We are now seeking out other professionals and are looking into IVF. On top of having issues with conceiving naturally I have to think about this as well. Do any of you have just the one mutated gene? How is that different from having both genes with Factor 5? Thank you for all of your comments and guidance.
Hi everyone. First, my condolences to all who have lost their babies. There isn't much to say about ti because I'm sure every woman who has gone through it will say the same "You just don't understand" - and they would be right, I don't. I have one healthy daughter who is 12 and I am 13 weeks pregnant with my second. I, too, have Factor V and have had 3 blood clots in the past (all before 2004) I have since dropped 50 lbs and am now 124lbs. I have had no issues so far, but fear is among the biggest emotion I feel. I go to my hemo dr today and he'll do the shots, I'm sure. I was on shots for 2 months, then warfin for 2 years and got off it myself due to doctors not dosing right and giving me internal bleeding. I'm so petrified of having a MC. I think about it all the time. I'm so glad I found this site. Reading other's stories helps you deal and cope better. Thanks so much for sharing your stories
hi i have factor 5, ive had 2 miscarrages before i was 25 and now im 38 weeks pregnant im scared of stillbirth but hope to have a healthy baby girl soon lets hope 3rd time lucky ;)
I found out in 2008 that I have Factor V, but I have never, ever had a single problem with clotting. My sister, who also has this disorder, had two babies without any significant complications (though they were both premature, but only slightly). My husband and I have struggled and struggled to get pregnant, but in nearly 3 years, I have yet to see ONE single positive pregnancy test. Could my FV Leiden be causing VERY early miscarriages (I have had late periods, including one cycle that lasted 42 days)? Could the FV Leiden even prevent implantation? I'm trying to decide if we should consider Embryo Adoption for a way to build our family, but I'd need to research it first.
I have two healthy children and had two miscarriages. I found out about 2 yrs ago that I had factor V. It really explains a lot given my medical history. Both of my children were premature and I'm not wanting to freak anyone out cause it's not always that common but those that go on the shot during pregnancy PLEASE make sure your dr is medically trained in Factor V. We didn't know I had it so I'm not blaming mine but, I almost lost my life AND my babies due to an internal placental abruption which I found CAN be caused by the shots. It IS the safer and smarter way to go during pregnancy. On the plus side I did find that usually only females get this wonderful thing due to the estrogen that loves us oh so much! My prayers and well wishes are with you all. I'm blessed and thankful for the two I have and am DONE in the baby department. I was a nervous wreak through it all anyway so, I'm thankful that I didn't know I had it then. Just that I had HAD clots.
I also have Factor V Leiden Mutation. I have had three miscarriages all at 14 weeks-no heartbeat. Two of the miscarriages I was on heparin injections and baby aspirin. What do you make of that?
I found out I had Factor 5, along with MTHFR at the age of 18 when I had heart surgery. I am now going to be 25 and have been thinking about children more. I was the one who NEVER wanted kids, but now knowing that I may not be able to conceive a child healthy makes me very scared and I want to overcome this obstacle. After reading so many stories on the net, I am SCARED TO DEATH, to try to bring a child into the world, knowing that I am more likely to conceive a child with down syndrome and what not. I was also told that if I ever want to have children I would need to be on high obstetrician watch, is this something I really want to go through with?? My soon to be husband really wants children and I'm afraid this is all scaring him away, but let's face it, it's reality. What do I do???
I have Factor 5 from both sides of my family, thanks mom and dad! I feel lucky to know. My mom had a miscarriage before me and then had problems with my sister and she has just one gene of it. I am now 31 weeks pregnant and baby is healthy and perfect. I have to do heparin shots twice a day and see my doctor much too often along with getting my blood tested weekly, etc., but I keep telling myself I am lucky to know before hand that I have Factor 5 and lucky to be able to get pregnant. Women used to not know why they had miscarriages and stillbirths, now some of us can know. Even though it was awful to have to give shots at the beginning, lots of tears,etc. it is all worth it when we see the happy healthy baby. I wish you all a good pregnancy and healthy birth of your child!
My first pregnancy had no complications, and ended in a healthy baby boy, who is now 5. I have never had a blood clot, and none of my family has had blood clots. My husband and I had no problem conceiving when we decided it was time for baby number two. We heard the heartbeat at 12 weeks, all was fine, and then at 17 weeks I had a miscarriage. Usually if you have a miscarriage in the second trimester they should do some sort of testing, but my OB didn't. I waited the 3 months and then got pregnant again right away, and had a miscarriage at 7 weeks. I asked my OB for tests, they were reluctant. I figured that it's my dime, so order me the tests. I came back hetero for Factor V. I had already learned about Factor V after googling "recurrent miscarriage" and "second trimester miscarriage". I honestly knew more about it than the OB office, I think. I had one cycle and got pregnant right away. I went back to the OB and heard the nurses whispering about me and what they should do, so I left and got a new OB.
My new OB office was more knowledgable on Factor V Leiden. I took one aspirin a day, and now have a beautiful, smart, 15 month old daughter! I did end up having a C-Section(because she was so big), and had to give myself shots of Lovenox for six weeks afterwards. And, although I spent my entire pregnancy worrying-up until the last second when I heard her first cries-it was totally worth it.
I told myself I would post something about it, to let other women know that there is hope, don't give up. Find a doctor who knows about Factor V. Don't read the posts about Aspirin not working, because it does. Don't read the statistics and freak out. Feel lucky that you can GET pregnant, many women have problems with that. Know that there is hope. I also think that if you are hetero(one gene), the baby's genetic make up may have an effect. If the baby is hetero for the blood clotting disorder, it may have an effect also.
Anyhow, good luck, someday you will be holding your baby and all of the worries and time will be a distant memory when you look in your little one's eyes!
Hi there i posted about 4 months ago...I had had 2 miscarrages due to factor 5 before i was 25 and was quite far through my 3rd pregnancy at 26 years old. I am very pleased to say I had my baby!!!! :) she arrived on her due date after a hassle free natural birth she is 3 months old now and I want to post to give people who may be struggling hope. During my pregnancy I took 1 baby asprin a day til 38 weeks had extra scans through out the pregnancy and I made sure I went to the best hospital I could for the birth(incase anything went wrong unfortunatly for me that ment travelling 2 hours in labour but it was worth it)and my midwife was informed in advance. During the birth I wore TED stockings and after the birth I was monitored a bit closer not because anything was wrong just to make sure my bleeding was ok and peace of mind, for 4 weeks after the birth I also gave myself an injection in the stomach 40ml of clexane. Now since I had the baby I don't take anything.
Having factor v leiden can be scary because you just dont know how it will affect you esp during pregnancy believe me I was so scared after my miscarrages that I wouldn't be able to have a baby but dont give up its possible you just need to get Dr that knows what hes talking about and try not to worry don't be scared to ask Dr questions too I asked alot even asked different Dr the same question to get their opinion and it helped relieve my anxiety if you want to ask me anything my email is mc2investments@gmail.com I don't know much more than my experience but I remember looking for help and answers on the net when I was worried and if I can help I will ;)
WOW im not the only one out there, i was told at 15 i had factor v due to all the females in my family having it, may 09 i had 7 big clots in my lung and today of to the doctor to see whats the best for me to fall pregnant, I know what i went throught with my 1st baby years before i had clots, but now i have had clots im worried whats going to happen, but reading all this has seen im not the only one
Hey Sarah
Yeah you are not the only one which can be reassuring ay. Hope your Dr visit goes ok try not to worry these days there are ways to improve your chances of having a baby with Factor 5 using blood thinners etc its just finding a good Dr and finding what works for you :) good luck!
I was diagnosed with factor 5 last year. Ive had a couple of miscarriages one at 11 weeks and the last one at six weeks. As my biological clock is also ticking I've resorted to IVF in hope of having a baby. Have just started my second IVF cycle. Im taking baby asprin daily and there has been some talk of me switching to clexane injections at 12 weeks of pregnancy. So many different opinions out there. hard to know what to do
I'm really happy to have found this page. Though I'm sad to read all the stories, it's comforting to know there're more of us and that it's possible to have a positive outcome.
I had my daughter in 2007 with no complications at all. In 2009 we decided it was time for a sibling and I had a coil removed. It took 6 months for the hormones to get out of my body, but as soon as I was regular I was so happy to find out I got pregnant first try. At my first scan at 10 weeks we sadly found out it hadn't progressed beyon 6 weeks and I ended up with a D&C.
I haev since had 3 more early miscarriages. I got my results back a couple of weeks ago and I was well surprised to see I have the FVL. I never heard of it before.
I'm seeing my consultant July 4th. Fingers crossed next time will be better. It'll be our last try. if it doesn't work with the right medication I'm not putting myself through this again.
I got my first blood clot in college when I was 21, and they tested me to find fvl, sure enough I had it and good thing we found out cause my grandmother had a blood clot at the time and didn't know it and my uncle. I had my first son in 2009, very healthy boy, I took two injections everyday for 11 months. At first it was super frightening, i would just sit there with the needle hovering above my belly luckly my family was amazing and would push it in for me eventually i got really good at it and could not even feel it, there are tricks. 6 months after I gave birth they found my second clot and put me on coumadin for life. Not exactly what I wanted, I am praying everyday that I will have the courage to either be happy and except 1 child or have the courage to try again. Not exactly sure what comes next but am just happy to talk about it. You feel like its your own internal battle you have to go thru yourself, but its not and we can help other people by getting the word out about factor v. Thanks ladies and keep up the faith. PS the shots really aren't that bad.
I also was diagnosed with factor v. A week after I had my little girl my left arm, face and leg went numb. They found a clot near my brain. I ended up having 3 strokes and having seizures. I went to rehab for 10 days. They said I recovered so fast bc I'm so young(27) I am still on warfarin and seizure meds. I go back to the dr next month. I get my blood checked once a month. I would like another baby but I don't know if I want to chance it.
hi everyone i had my first clot in my leg at 21 yrs due to birth control that i was on for only 3 weeks got my second clot at 10 wks gestation in my first pregnancy i w 1as put on high doses of innohep for rest of the pregnancy and for 6 wks post partum thankfully i had a healthy baby girl i went on to have 2 more successful pregnancies where i was on innohep shots for the duration of the pregnancies and again 6 wks after so there is hope im factor v leiden heterozygous i do believe that being on the heparin shots during pregnancy prevents any complications occuring of course like all of u i was a nervous wreck during those 3 pregnancies plenty of prayers and hope to all good luck miracles do happen also make sure ur obs dr is in the know of the condition if not change quickly thanks to everyone for sharing ur stories
Hello ladies! I am a college student and I am doing a paper on Factor V Leiden. I also have it and am hoping to gain DVT awareness with this paper. I was wondering if any of you would be willing to share and let me use your pregnancy with Factor V Leiden stories as reference for my paper. Please and thank you!
I developed my first clot when I was 18. The same week I graduated highschool I ended up in the hospital for two weeks. The clot had been there for a long time and I was having alot of complications but the doctors did not know what was wrong. I was 115lbs, working two jobs, and going to school. I was very active, and healthy.
My second clot formed in the end of the first trimester of my pregnancy with my son. I became pregnant with him a month after getting off of my coumadin treatment from my first clot. ( thank god I was off the coumadin! ) I was put on lovenox twice a day instead of once, and the rest of the pregnancy went pretty well after that. Aside from the swelling and leg pain, (which already normal to me after my first clot) He is my miracle baby. I am advised no more kids, but I was also advised not to have him either.
My third clot was developed after I decided it was a good idea to go tubing down the river. This put me in the hospital for my sons first birthday.
Luckily I have been stablized on my coumadin for two years now, and no new clots have formed.
I do however suffer from a Chronic DVT and vein insufficiency. I wear my compression stockings with pride! Because I am dying if I don't! lol
Well that is my story and I hope you all are ok with me using all of your stories as a reference to my paper :)
Hi there. Happy to find this. I have had 3 miscarriages & 1 ectopic pregnancy. I just found out I have factor v. We r going to try again but I'm nervous. You can use this for ur paper. I'm just praying as I discuss options with my dr tomorrow.
I'm pregnant again! Yay...Its very early days but hope that everything goes to plan like my last pregnancy (unlike my first two) Fingers tightly crossed!
Hi , all .
I have a DVt last dec and was in the hospital for 3 days I also have factor v and now try for a baby .Have anyone take baby aspirin while try or getting preg ? whats the amount of lovenox you take while u preg ? Is any one suggest anything to prevent the clots ? please let me know .Is anyone live in Mass ?
nataliewalsh2011@yahoo.com
Hi all,
First let me start by saying I am sorry for everyones losses, and I am happy to have found other women who share my issues. I got pregnant in July of 2009 and had what I thought was a good pregnancy. I started having pain in my right leg when I was 36 weeks. I thought it was my sciatica acting up. I had my son at 38 weeks due to high blood pressure, well.when my son was 6 weeks old I was rushed to the er for a dvt from my hip to my ankle. They put me on lovenox and coumadin. Two weeks later I was back in the er for a pe (pulmonary embolisim) and found out after I nearly died that I have factor V leiden. I still take the lovenox as a preventative because we are trying to conceive again, but we are scared of what could happen.
Hi There. I had two episodes. The first time i had a D.V.T P.E and second time only D.V.T Before i had the P.
Hi there. I had two episodes. First a dvt and pe which was assumingly caused by the clomid i took, to try and get pregnant. I was on warfarin for 18months. And then my doc said i' should be fine without the warfarin. After 10months i had another dvt. I am now on warfarin for life. My gynae sais i will be fine using clomid as long as i am on clexane (injection bloodthinner
I have factor v lieden and MTHFR. I have had a blood clot in my arm a couple yrs ago and last year had several blood clots in my lung. Was sent home from my dr diagnosed with kidney stone. Then later went to the ER and was sent home with a diagnosis of a bruised rib. Went back to ER that night when I almost had no ability to breath. They finally found the blood clots. A year later my husband and I went to the perinatologist (last week). He said that if I try to get pregnant without being on blood thinner shots I will have miscarriages. If I take shots now and then have Miscarriage I could bleed out and die. We have no children and I am heart broken. My husband says there is no way he is chancing my life I'll never know the joy of having a child and all I can say is I'm shattered.
All I want to say is never give up hope. I have a double whammy, I was diagnosised with systemic lupus at the age of 17 and then diagnosised with Factor V at the age of 23. I have 4 beatiful children, 2 girls 10 and 9 and 2 boys, 5 and 2. I had 6 miscarriages between the boys and thought I was done when god had another plan for me. Please don't let shots detour you from your dreams. I am a nurse and travel all week every week so it can be done. You do have to go to more doctors visits, more ultrasounds, more NST, and yes take shots but there isn't a day that goes bye that I regret taking those measures to get through my pregnancies.
Hi Everyone-
Thanks for sharing your stories. They have already helped me tremendously. I am 25 years old, and found out in Febuary that I am HOMOZYGOUS for Factor V Leiden (extremely rare-both my parents have it and did not know it-no history of blood clots in our family). I was on birth control since I was 18, but just this past December and Febuary I devleoped 2 blood clots (one in my arm and one in my ankle...both superficial). I had to come off birth control and am now taking an 81 MG aspirin each day. My question to all of you is this: For those of us with Factor V Leiden, is it harder to become pregnant/have normal pregnancies the older we get? I do not want to have children until I am 27-28 years old, but now I am afraid the longer I wait the harder it will be (I just got married in October). Any advice would be great :) Good luck to all of you!!
Most people with factor V have babies. Each one of us with FVL had at least one parent with it. For me, it is likely my mom, but she hasn't been tested. There are some great online support groups out there for people with clotting conditions who want to have a baby. Check out my hub, scroll to the very bottom. There are two groups listed that are supposed to be excellent sources of support. http://lwelch.hubpages.com/hub/Clots-pregnancy
I have a long story... and complete family history of this mutation. In 1997 my sister almost lost my niece at 26 weeks. She survived and now is 14 years old. In 1998 once again my sister almost lost my niece at 28 weeks and by the Grace of God once again she survived and is now 13. Over the span of the next 5 years my sister was having odd health issues including 2 miscarriages in her second trimester.They began testing her for everything under the moon. she came back positive for Factor V Leiden. When she conceived my Nephew she was put on a blood thinner I believe Heprin or Cumadin. (Excuse the incorrect spellings)One during the pregnancy and the other after. After 2 Pre-Term deliveries & 2 miscarriages she was able to carry my nephew to full term. Fast forward 10 years later... I had 3 miscarriages over a span of 14 months. One of which was at 14 weeks after hearing her heartbeat and seeing her healthy at 10 weeks. Off subject but(We did decide to have her cremated) Doing a breakdown in my doctors office he decided to test me for any type of blood condition. After 16 vile's of blood and 3 weeks of waiting I came back positive for Factor V Leiden. It all makes sense to me now. My Grandmother had 3 miscarriages and had a stroke in her 70's. My doctor tells me that I need to be on baby Asperin 81 mg daily and if I am trying to conceive to be on Lovanox.
I found out I had both Factor 5 and MTHFR. I was told having two at the same time was rare. I have had multiple problems in pregnancy. My first son was born stillborn when I was 18 years old. I was around 30 weeks. He was incredibly under weight and under developed. I then miscarried at about 16 weeks when I was 19. At 21 I had my oldest living son who is now 8 years old and healthy. I did have low progesterone levels with him around 16 weeks though and had to insert pills. At 22 I miscarried at around 6 weeks. At 25 I had my youngest son. Hes now a healthy 4 year old. Through all of this, it wasnt untill I was pregnant with my youngest child that the OB I was seeing actually looked at my history and did a bunch if blood tests. She told me with just one of these disorders Im lucky to have my boys but with 2 I was VERY lucky. And also lucky to be alive myself having been pregnant and untreated so many times and fir so long. She told me to start taking baby aspirin asap. And after the birth I was on baby aspirin and shots of lovenox for 6 weeks. I was told anytime I did get pregnant again if ever I would have to be on blood thinners and folic acid and do the shots. I am now trying to have another baby. Is there anything I can do while trying? I take my aspirin everyday anyway because my legs hurt and swell up often. Should I get extra foluc acid and b vitamins and iron while trying?
There is a yahoo group for pregnancy and MTHFR that I understand is very active and discusses other thrombophilias as well. I just grabbed it off of my hub of a similar topic to this one: http://health.groups.yahoo.com/group/MTHFRPG/ Here is one for FVL http://health.groups.yahoo.com/group/FVL-PG/ Also, The National Blood Clot Alliance (Stop the Clot) Has some videos on the topic You can find them at YouTube or iTunes... Here is a link to the iTunes ones http://itunes.apple.com/us/podcast/nbca-stop-clot-
I may have some other tips that I missed on my hub... http://hubpages.com/t/67b4a
It sounds like you are a lucky lady and that your body is coping well with your genetics! The March of Dimes site would be another place that is of use to you as they have lots of info on thrombophilias.
Best wishes!
laurie 2 years ago
Well....I was 25 1/2 weeks along when there was starting to be problmes with my little boy . He was not growing properlly he was small and i had to go get a whole bunch of tests done a cordiocentisis and blood work up the ying yang. They found that his arterie to him in the placenta was intermintent flow and was not getting enough nutrients to him... At 28 weeks i went in for an ultrasound and was sadlly told that he had passed away.. Three days later i had my little boy Alex after 6 hours of labour and really bad bleeding. He was only 1 lb 4 ounces but sooo cute...He was a stillborn and i was devistated... While i was htere they did more blood tests and they found that i have not one but two blod disorders.. I have factor V Leiden Gene mutation and Prothrombin gene mutation..Which fromn teh specialist told me is very very very rare to have both..!!!
tha tis what my little boy died from got a clot in his arterie and i am getting my tubes tied. teh doc told me that i coulkd but i would have to be on injections for a year and monitored and that it may not change the outcome ... so i have decided to get my tubes c ut !. I have one beautifull daughter and did not know i had this disorder with her so you can have healthy babies but i am not putting myself through taht again or my huby or my daughter... I got told it is way higher risks with both disorders and they do not know alot about having both becasue there is not too many people with it !!. lucky me !.