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August 23rd, 2012, 08:15 PM
Crystal Lynn's Avatar
Crystal Lynn Crystal Lynn is offline
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Join Date: Aug 2012
Location: Michigan
Posts: 58
Yeah, when she told me I had one of the worst clotting disorders, that wasn't something I was expecting to hear but after seeing what my dad has gone through in my lifetime, I can't say I was totally shocked either. But we didn't know what he had going on was something that could be inherited. Since everything for him started after getting injured and we thought it was just a bad chain of events. He still hasn't been tested to know for sure he has what I have, but we pretty much assume. My grandfather died from a clot, and several aunt's & uncle's have had clots too, we just never caught this because everyone that had one had some type of injury associated with it. At my preconception appt recently, the OB told me I might even have more going on than just the ATIII and it could be something they don't even know how to test for yet. That really made me feel even better lol. I hope that's not true, but again, with the increase of problems I'm gettting as I get older, it wouldn't totally shock me either. My blood flow seems to be getting worse and worse, my arms & legs get numb & tingly on & off all the time now. So I think I might have some venous issues, lovely. I just turned 29, and I've been hoping to have our first baby before I was 30. I've always heard that once you hit 30, you start noticing the first signs of getting older lol & if thats true, I'm really screwed if I already have problems. So I don't want to wait & be worse off in a few years.

I've picked doctors solely based on being able to pronounce their name too lol. What are the odds you would end up with him though out of everyone! I've been looking into finding a new Dr, but I haven't decided on one yet. So for now, I've just been seeing the same one I've had. Your doctor's wife is very lucky she hasn't had any clots, but it sounds like she is in good hands if anything ever happened.

$100 for a month's supply of lovonox isn't too bad actually. I mean, its still not cheap, but considering the cost without insurance, that is a great price. I think since I've never actively tried to have a baby, they don't jump to give me lovonox since technically I personally haven't had any issues yet (i.e. miscarriage, etc.) so they give me a harder time. I bet if I had a miscarriage, my insurance wouldn't hesitate to let me be on lovonox while ttc. Its unfortunate that even though you have a diagnosed reason to take something preventative, you still have to go through something horrible before they will allow you to do what you should be doing in the first place. I have been on Coumadin since I was 22 & will be on it for life, yet that doesn't seem to make a difference... even knowing the risks involved & having a disorder & a history of clots. I think once everything is figured out & I go to the hematologist, maybe I can keep pushing for it & maybe with a prior auth (like you said) they will approve it. I"ll keep my fingers crossed. If so, I'd just have to hope I got pregnant within that 4 month time frame! Thats awesome you managed to conceive by that last month! Whew, that was getting close!

So will they be inducing you at 39 weeks? I ask because they told me that is what they will be planning to do for me. She didn't mention it, but I know they do usually switch you off lovonox at the end & then back on it post partum, which it sounds like that is exactly what the plan is for you too. Congrats on having a boy!! That is wonderful! I bet your hubby is thrilled he won't be the only man in the house anymore lol.

I know all about the bruising from lovonox, I've had to be bridged a few times in the past. I can't imagine doing that for 9 months, but I'm sure it just becomes a normal routine after a while. Lovonox never really bothered me before, it's just more annoying & the bruising looks terrible. If it wasn't for the tingling & things in my arms & legs, I would just assume any aches & pains were from getting older too lol, so I totally understand that. There would be no reason to think otherwise... but since I know for me, other things seem to be going on that are out of the norm for my age, I start looking for other causes. Seeing what my dad has gone through & realizing that I am beginning to have similar things going on, I immediately think of those things first as a cause... and it all stems from our blood. So that is why I always wondered about the association of the blood disorder with pregnancy symptoms. But maybe it's just me being worried!

I have read somewhere that in some clotting disorders it is not always inherited to the next generation, but I'm just going to assume it's a 50/50 chance. Hopefully your kids don't inherit it! But on the brighter side, if they did, at least you & your doctor know to look for it right away & take precautions... instead of what we've had to go through & find out the hard way. I have to say, I am glad I found you on here. It really is nice to have someone to talk to that knows about this and understands it & is going through the same thing. Btw, sorry I write so much! lol. I know I seem to always manage to write a book every time I reply lol. I'm still new to this site, so I'm not sure if you can "friend" people on here, but if I figure it out, I will add you so we can try to continue to stay in touch. Otherwise, I'll just keep going to this post lol.
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