Factor V Leiden or APC Resistance

Hello ladies,

I am wondering if anyone here knows that they have this genetic condition?
I was diagnosed at the age of 12 and am awaiting the arrival of my first child at the moment. I actually don't know anyone else that is/has been pregnant with this condition and what it meant for them (if anything).

It would be great to hear from anyone who knows that they have this as sometimes I worry a lot about it (even tho I had no reason so far!).

I'm sure there is quite a few people here with it it's just not that common to know about it...

Thanks heaps,
Julia

Very nice of you not to read and run!!

MW has had a couple of people with it in the past (that knew of it) but noone at the moment.

Most people get diagnosed when they have a DVT or clotting in the lungs or someone in their family has but I was diagnosed more by accident as I had some real nasty ear problems as a kid (my hearing got all stuffed one day in the right ear) and they couldn't figure what it was so did a million (blood) tests and I was positive for Factor V Leiden so they assumed I MAY have had a tiny blood clot in a small artery in the ear causing my hearing to crash but that wasn't really proven ever so who knows.... Hearing is all back to normal anyway.

There are no symptoms until you actually get clots in your blood (that don't always produce symptoms either).
About 5-10% of all people with european ancestory suffer from it so it is very common!
Most people never experience any problems but sometimes people will suffer repeat miscarriages/stillbirths/clotting etc.... I don't think there is too much reliable information out there as it has only been discovered in the mid 90's.

Cheers,
Julia

My sister has FV Leiden . For her it meant that she was under the high risk teams for bother her pregnancies, was on clexane jabs every day and that she had to have a managed birth each time as she had to stop the clexane within so many hours of the birth. Apart from that, was relatively straight forward pregnancies and births each time. Not much help sorry, but if you have any specific stuff you want to know, let me know and I'll check it out with her.

Im also heterozygous and just had my second baby 4 weeks ago. With my first baby I saw a few different specialists so they could decide which way to treat me, but for my second they have just gone ahead with the same programme.

With both babies I have had clexane injections for the first 6 days after birth, combined with warfarin, and then stayed on warfarin for the next 6 weeks. The most annoying thing is having to get blood tests all the time, but otherwise everythings been fine.

Hey Julia87 - course I don't mind you asking, that's what this place is for .

Yes, she has had 2 clots before in her unhealthy years when she was smoking and on the pill too, as well as being overweight. Lots of risk factors there. She also had high blood pressure before she was pregnant and was on meds for that. Overall, with all those factors, they thought she needed pretty intense monitoring. HTH

The hospital put me on low dose aspirin after my second miscarriage and i went on to have 2 more miscarriages while on aspirin.

They hospital told me it was just one of those things...the fertility specialist told me it was just one of those things.

So i got a 3rd opinion and it turned out i needed clexane injections...and the aspirin didnt work becasue it wasnt strong enough to stop the blood clots around the placenta.

I had a csection because i had already had one, and i refused to be induced again (bad experience last time).

Okay as for the clexane injections...honestly it will hurt less if you do it yourself and the trick is to sit up straight on the bed or couch, grab a pouch of skin and put the needle in and away you go. (once you have done it a couple of times, its becomes second nature and part of the routine.)

Did they tell you to make sure you inject at the same time everyday?

The one thing i was told...if the needle hurts when going in, pull it out and put it in another place, because if it hurts, its because you have hit a blood vessel and you will bruise if you inject. (do not rub the site after you have injected as this will cause a lump and bruising to form).

Edited by Kazzle

I thought clexane during pregnancy was a given for FVL so interesting to hear about the aspirin (I don't have FVL myself). I second Kazzle on the clexane - do it yourself as you'll have greater control over the process, and will know where/where it hurts earlier so you can quickly remedy it. I sometimes find that the longer you stuff around psyching yourself up, the more that "leaks" onto the tip and that's the part that hurts the most (and usually the only bruising I get). Kazzle's right, do it a couple of times and it will quickly become routine. Do not rub it or you will bruise (painfully for a couple of days).

you have a bout 1/2 grace either side...oh and did they tell you to make sure that you dont inject by the belly button....needs to be 5cm or more away from it

Yahhh now that the first ones done you will be a pro and you just wont think about it