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Hi Ladies! I haven't checked in for awhile. I've been focusing on ttc, and starting over, rather than dwelling. It's definitely helped me get out of a funk. But now I have a question for you all, and I'm posting this in various places, trying to find the right board for it.
I was just diagnosed with Factor V Leiden, heterozygous, and I'm trying to find some other ladies that also have it. I only have my test results at the moment, I have a Dr's apt tomorrow for the Heparin/Lovenox discussion with my peri (and of course whatever else this entails). I'm just not very knowledgable about this, and I am trying to gather information. Any help or information would be amazing!!
i have factor v, i know this is going to sound stupid...i have the one gene, i just can't keep the one gene, 2 gene thing straight in my head. it is a clotting disorder, is there anything you would like to know in particular?
i have factor v, i know this is going to sound stupid...i have the one gene, i just can't keep the one gene, 2 gene thing straight in my head. it is a clotting disorder, is there anything you would like to know in particular?[/b]
YAY!!! Not that you have it, of course, but that I found you! Teehee, you're hetero like me, that's the one gene. And yes, tell me everything you know. I know the basics, like what it is, it's genetic, my mother/father passed it on. What exactly it does, a faulty interaction between whatever enzyme (APC?) clips clotting blood vessels, etc. So I guess tell me about what problems you've come across, have you had clots, what's your treatment, what route did you have to go after being diagnosed, did you have to see a hematologist or just a perinatologist. Stuff like that.
ok let me say first of all....i don't think that it has anything to do with any of my losses...i have seen so many doctors.
my entire family has factor v, some have one gene, some have 2 genes, i have 6 aunts who have this, there has only been one still born and that was a cord accident. i have been on lovenox for all but one of my losses. even the hematologist doesn't believe that my recurring losses are due to factor v.
i'm probably not the best person for this, as i am sure my losses are for other reasons. but for future pregnancies i will be on aspirin while ttc, and then once we get a h/b i will be put on lovenox. some of my past pregnancies i was put on lovenox from a positive blood test, but i still m/c'd.
i only see a hematologist when i am pregnant, and i think that is for a quick hey how ya doing, and bloodwork. i do see a peri also, my first loss, my water broke at 14 weeks so now as a precaution i see him.
i really wish that i could have been of some real help, but like i said, i honestly don't believe that it has anything to do with my losses. out of 6 aunts, 17 cousins ( by the way all 6 aunts have at least one gene), there was only one loss. i guess my mom has to be thrown into that count too, lol...7 sisters.
now i do know that my grandmother, had 2 m/c's, but i don't know anything about those.
Hmmm, well that's not the kind of info I expected. But I'm very glad that it doesn't seem to have caused your losses. I guess I kind of expected that this was my answer, as I haven't had anything else come back abnormal. But... any information is better than none. At this point in time, I'm the first to be diagnosed w/ this in my family, so who knows what side it's on and who else has it.
Well I had my appointment this morning, it was pretty uneventful. My peri doesn't think I need to start the lovenox (which he'll prescribe instead of heparin) until I get a positive hpt, and they weren't inclined to do that right now since I'm only 9dpo. I'm supposed to call the nurse as soon as that happens, and they'll phone in my prescription. He'll start me off on 40mg of Lovenox a day (at least that was my understanding). He doesn't seem to think that being heterozygous FVL is that big of a deal. He didn't suggest that I even need to see a Hematologist, as he can monitor my dosage and check my blood work himself every couple weeks once I start the lovenox. I was given a presentation on how to give myself the shots by his nurse. My protime is fine right now, so other than while pg he doesn't think I need to worry about this except to be aware of the warning signs of clots and that it wouldn't hurt to take a regular aspirin a day (if I'm not ttc, but for the time being take the baby aspirin). He didn't have anything extra to tell me, that I hadn't already read in my on-line research. And that was pretty much the conclusion of my visit. I guess I didn't really expect a whole lot more, but then again..... I didn't know what to expect at all.
I also called and check on my insurance, and the Lovenox I can get a 30 day supply in the pre-filled syringes or in the vial, and it will only cost me $16.67. I'm sooo excited it's not going to break my pocket-book! I was already worrying about juggling other expenses, but that's definitely going to be OK.
well i had written out a whole thing last night, and when i hit reply it was lost.....in a nut shell.....i am sorry that i couldn't be of more help, but just b/c this is my history/ problems with having another baby, doesn't mean that it isn't the answer for you. i know its difficult not having any concrete answers.
but now on today post, that is my therapy also, but they are starting the lovenox once i get a h/b, for me starting earlier never seemed to make a difference. and let me say that is a good price for the lovenox....my insurance covers mine, so i either pay 15 or 30 a month, don't remember now, its been a while since i have had to use it, but i think i have heard that it can be a little pricey. i think factor v really becomes an issue when you have the 2 genes of it, but the doctors will treat it, b/c you just never know. are there other tests you are waiting on?
with the lovenox....the trick is to ice your stomach really good before giving it, you don't feel the needle and you won't get the burn afterwards.
i really hope you the best of luck, make sure you keep us updated.