Factor V Leiden Moms

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My blood testing is tomorrow, wish me luck! But I do have a question, does anyone remember how long it took for you to get your results back? Was it same day, or a few days later? I am so scared I am just out of my mind with worry.
 
prettybirdy27 said:
My blood testing is tomorrow, wish me luck! But I do have a question, does anyone remember how long it took for you to get your results back? Was it same day, or a few days later? I am so scared I am just out of my mind with worry.
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it took two weeks for me to get my results back...
don't be scared :hugs: there is plenty of help for you
 
Good luck xxxx :flower:


I must say, the injections don't seem like such a big deal this time, not even bothered by them, only a few bruises and one "lump" so far, been taking then since I was 6 weeks.... three goes to get me used to them then lol! :thumbup:
 
Well, I just got home from my testing. The Doctor said it will take 7-10 days to get results. However, he also said that based on my personal history, he highly doubts I have it. Plus my dad only has one copy, and my sister didn't get it, so my odds are 50/50. Fingers crossed!
 
good luck, my brother hasn't got it but i have, i would never have known if it wasn't for all the mc's... i had my son 14yrs ago and i didn't know i had it then... i had a normal healthy pregnancy with him...
so yeah its 50/50 x
 
I had to take clexane in my last pregnancy from week 15 as my blood tested weakly positive for APL (sticky blood). I have not had any medication for it since 6 weeks postpartum. My dr didn't restest.

I have a scan on Friday and all being well I'll be put on clexane again. And this time, they're going to make sure they test me when not pregnant.
 
i was put on clexane 6 weeks after my DD was born but same as you once 6 weeks were up and the injections stopped that was it... i did ask if i needed to stay on blood thinners but they didn't seem interested after the 6 weeks? i mean its not like the leidens will go away after the baby is born?
they didn't offer me any testing whilst i was pregnant? infact one of the midwifes said to me "you're very lucky they tested you for it as its an expensive test" horrible woman LOL maybe different hospitals do things differently?
do you all have to see a consultant through out your pregnancy? and have more scans?
 
maisybump said:
i was put on clexane 6 weeks after my DD was born but same as you once 6 weeks were up and the injections stopped that was it... i did ask if i needed to stay on blood thinners but they didn't seem interested after the 6 weeks? i mean its not like the leidens will go away after the baby is born?
they didn't offer me any testing whilst i was pregnant? infact one of the midwifes said to me "you're very lucky they tested you for it as its an expensive test" horrible woman LOL maybe different hospitals do things differently?
do you all have to see a consultant through out your pregnancy? and have more scans?
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They said that to me about the testing. Not that it's too expensive but they never usually test for it. They have no idea why they decided to whilst I was pregnant last time either. I was 15 weeks, never had a clot and bam, was told I needed to inject everyday. I was upset but I got used to it. I was consultant led from that point. I will be this time but that's more to do with having an EMCS under general anaesthetic last time I think.

I'm not sure for if this factor V is the same thing I was 'diagnosed' with but you need two positives 12 weeks apart when not pregnant to get a proper diagnosis. And since I've only been tested when pregnant, they do not have a definite answer his time therefore I'll be on it as a precaution for this pregnancy regardless of a negative or positive results in blood as pregnancy can affect it.

I have my first scan on Friday because of it before starting the injections to make sure pregnancy is progressing before the restart me on them
 
As for being on blood thinners after giving birth, my hematologist gave me a rundown on what would happen were I diagnosed with it. If I were, I would go on blood thinners right away, but he wasn't sure exactly which one he would want me on yet. He said he would keep me on them until about two weeks before my EDD as the blood thinners can cause complications/issues with painkillers, etc. Then I'd go back on them for six weeks after the birth and then be removed again. I think it's only because your risk for a blood clot is so much higher when you are pregnant, but when you aren't, it's not as high, even though it's still higher than the average person.

He also said that if I test positive for Factor V, that we can scan my legs for clots. Has anyone ever had this done? What does that entail?
 
i've never been scanned for clots no sorry, i mean when they told me i had it is i was like "i don't have clotty periods or anything" LOL and he just said it didn't work like that?
isabellajayne i had a scan at 8 + 5 too for the same reasons i guess its not too bad you get to see the baby sooner :) and they tested me before i conceived because they couldn't understand why i kept mc'ing (i had 5 in a row that year) so your right i'm not sure why they would test in pregnancy if it doesn't give accurate results?
do you all get extra scans? like 28 and week 32? and did they tell you they wouldn't let you go to term? they started sweeping me at 36 weeks...? i had my DD at 37+2 xx
 
So my results came back, but I don't know what they mean! The results were emailed to me, and it says "Result: heterozygous mutant" but then includes a note below saying "One or both copies may be wild" so I can't tell if it means I have it or not.

I called my hematologist for clarification, but he isn't in. The nurse on-call answered and said she would run it by one of the doctors there and call me back. she did, and when she called me back she said "Well, we don't understand the results either. You're going to have to wait until Monday when your hematologist is back in."

The way the results look to me is that I have it. This is going to be a long, hard, worrysome weekend for me :/
 
Yes that means you have it, but the mutated gene can be mutated on both sides or just one, mine is just one side.
 
I'm not on medication as of this moment, but I do have to meet with another set of doctors to discuss management etc. My new set of Doctors are in another hospital, and my next appointment with them starts @ 9am May 14th, I meet with a Genetic Consultant @ 9:15am, another Ultrasound @ 10:00am, then an appointment with another Doctor at 10:45am I think I'll have a better picture of what's going to happen after that appointment.

On another note I'm seeing my OB this Friday. Right now my appointment's seem to be every 2 weeks. I'm hoping they start spacing out after we get everything worked out.
 
Best of luck to you, Dragon Chaser. I have an appointment with my hematologist this afternoon (his name is Vlad, I still can't get over the fact that my blood doctor's name is Vlad) to discuss my results and hopefully work on a treatment plan. He said they would be scanning me for clots, so I'm hoping they do that today so I don't have to keep making appointments and going back there. But I have a feeling I won't be that lucky.

Vlad did update me on my diagnosis, it is officially "Results
One copy of the Factor V (F5) gene carries the Leiden (G1691A) mutation while the other copy is wild type." So I'm officially a mutant!

I'm handling this okay, but my mother in law, bless her heart, is worked up into a tizzy. She is insisting that someone be present with me at all appointments because she's worried I can't handle it alone. She knows I have an appointment this afternoon and she kept begging me to let her come with - I have a feeling I'll show up to see her sitting in the waiting room.
 
So, here's how yesterday went down.

I met with my hematologist first, and he confirmed the results and walked me through treatment. First we have to ultrasound my legs to see if there are clots.

If there are clots, I go on injections of Lovenox right away for the duration of the pregnancy.

If there are no clots, I go on baby aspirin for basically the rest of my life or the pregnancy, depending on what I want to do. I will also have to go on Lovenox injections for six weeks following birth.

So they got me in to ultrasound my legs late last night. I didn't watch the screen because I knew I have no idea what I'm looking at and I'd probably just scare myself more. They weren't able to get the results of the ultrasound to me last night, but the tech did say that if she had seen something alarming, then legally she's not allowed to let me leave, and they wheel me down to emergency and put a stint in. Luckily, she dismissed me right away. This doesn't mean I don't have clots, it just means I don't have anything that's alarming or any threatening clots.

So now we just wait to see the results.
 
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