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August 21st, 2012, 08:27 PM
Crystal Lynn's Avatar
Crystal Lynn Crystal Lynn is offline
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Join Date: Aug 2012
Location: Michigan
Posts: 58
Hi Amy, I think that is wonderful that you are on your 3rd baby! Congrats! I've heard of Factor V before, and from what I've read in the past it sounds very similar to what I have. I almost never hear anything about ATIII deficiency but I see alot of info on Factor V Leiden. Years ago my hematologist told me that ATIII was very rare & one of the worst of the clotting disorders (I dont' know how true that really is though). But I have to say, they all sound about the same to me and all of them are horrible! Unfortunately I can hardly ever find any info on ATIII though but I assume any info I find on Factor V would be about the same outcomes, so I go by that info the most.

I think that is awesome that your doctor's wife has a clotting disorder! I mean, of course I dont' wish it on anyone.. but because of that I'm sure he is an amazing doctor to have if you have a clotting disorder! I'm sure he has done tons of research on it & knows more about it than most doctors do, not to mention the emotional effects of having to deal with it on a personal level. Which can really make a difference in the care you receive. I'm glad to hear you are in very good hands

I don't remember where I seen the info from, because it was a long time ago, but I do remember hearing exactly what you said about terminating the pregnancy because of the effects of coumadin. That is why when the OB told me that I might have to stay on it throughout pregnancy I was in shock! I must have had a *** look on my face at that exact moment when she said it too lol. I have heard from many doctors (and many of them that I work with) that it is ok to be on Coumadin in the very beginning of pregnancy, but as soon as you find out you are pregnant, that you must switch to Lovonox right away. Knowing all of the risks, I am still not happy about that idea and I have continually asked about starting lovonox while ttc. I have heard that some women, like you, have been able to do just that. But every time I ask, the answer is no. I know that Lovonox is very expensive & insurance co.'s don't like to pay for it until it is absolutely necessary so I will have to wait until it is confirmed that I'm pregnant... which makes me so mad. Unless I want to pay for it out of pocket which could cost well over $1000 per Rx. And that wouldn't even be for a month's supply So I guess I will just have to make sure I find out asap when I get pregnant.. which is so nerve wrecking. How did you manage to start Lovonox while ttc? If you have any tips on how to get them to let you do that, I would love to know! I spoke with some of the doctors I work with (they are not in the ob/gyn field) and they told me to talk to the hematologist about all of my options, but that one of the possibilities that might work for me is low molecular weight heparin, which is just another variant of heparin and lovonox. So I plan on mentioning that when I see them. I have taken it before, and its used the same way as lovonox, but I didn't know that would make a difference after they told me lovonox wouldn't be enough for me. So I'm interested in finding out about that. I just can't see any way that they would make me stay on coumadin! I can't get into the hematologist till late October, and it's going to drive me crazy waiting that long. But hopefully an opening comes up sooner so I can get in.

Thank you for all of your advise. I think you are definitely right though... I need to get as many opinions as I can so I can make the best decision possible. How far along are you right now? Has everything been going well so far? I was always curious to know if there were any unusual aches & pains for people with clotting disorders in early pregnancy... because of the changes in hormones & blood flow when your pregnant. I always wondered if someone like us would have abnormal early signs/symptoms of pregnancy due to that. But I guess if you are theraputic on your warfarin/coumadin and/or lovonox then your blood shouldn't act much different than a normal pregnancy I suppose. I think knowing about our clotting disorders prior to pregnancy is half the battle, because you can have a plan in place to help the pregnancy go more smoothly and have less complications and risks. So I am thankful for that at least.
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