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-   -   For all the Lovenox/Heparin Mama's out there: (http://www.justmommies.com/forums/f106-high-risk-pregnancy/2557615-for-all-lovenox-heparin-mamas-out-there.html)

Sharpay714 August 4th, 2012 08:28 PM

For all the Lovenox/Heparin Mama's out there:
 
Hello, I'm Sharpay. 3 weeks after I had my son I developed a vein long blood clot in my left leg and a pulmonary embolism. I have been scared for 3 years to have anymore children but the more I have prayed about it and put things in the Lord's hands He has changed my thinking. My DH and I are now wanting to TTC baby #2. MY OB has told me not to have anymore children but my internest who is wonderful especially when I was dealing with the DVT situation has told me I'll just go on Lovenox or Heparin during pregnancy and for 6 weeks after birth. I have seen on here there are a lot of Mom's who have had the same situation I did with my first pregnancy or either have a clotting disorder regardless if pregnant. I have also found others on other forums. My question to you is are you scared? Or do you full trust in the blood thinner? Should I stop and not TTC anymore? My family says that's the worst thing I could ever do to myself and my family is if I became pregnant. We trust God 100% and I have hope because I have read that many women just like me go on to have lots more babies...two ladies I found after their DVT have gone to have 6 children. :) I probably wont have that many lol I'll be fine with just one more. I just want to do the right thing. We would love to have more children but if I'm being stupid about this then I wont do it. My husband can get a vasectomy. We're really praying and hoping God will give us that little girl we both would adore.

I'm sorry if this is confusing lol I'm just so excited to be on this board and be able to talk with women like myself. I would also appreciate any other info besides what I asked if you would like to share. :)

Thanks,
Sharpay

Sharpay714 August 4th, 2012 09:40 PM

Re: For all the Lovenox/Heparin Mama's out there:
 
I do want to clarify, we're really not TTC with charting ect. If the Lord wants it to happen then we'll greatly be honored and welcome it with thanksgiving and we're praying for a baby too but it's all in the Lord's hands.

Sharpay714 August 5th, 2012 11:04 AM

Re: For all the Lovenox/Heparin Mama's out there:
 
No one at all? :(

AmyLM August 5th, 2012 03:15 PM

Re: For all the Lovenox/Heparin Mama's out there:
 
Hello! I am pregnant with baby #3 and I have a clotting disorder. I have beenon lovenox for each pregnancy. I had a dvt and a pe 10 years before ever getting pregnant. To answer your question, yes I am scared. But, the blood thinners work and I trust in God. I guess I have grown more confident with each pregnancy and not having anything happen. I don't think it's stupid to have another baby. I don't know why your ob would put that in your head to not have another. If it were me, I'd find another doctor. There are quite a few of us here that have had several successful pregnancies in spite of our clotting issues. I have to tell you that both my OB and my Internist are very supportive of my choice to have more children. My internal medicine doctor's wife has a clotting disorder, as well, and they have a few kids. She was on lovenox for each of her pregnancy. Good luck to you and I'll be happy to answer any questions you have about it!

L-SBB August 5th, 2012 04:03 PM

Re: For all the Lovenox/Heparin Mama's out there:
 
hi & welcome...i'm also on Lovenox + baby aspirin until around 36 weeks when they'll flip me to Heparin until delivery & then back onto Lovenox for i think 4-6 weeks after baby is born...i'm on it because of gene mutation (Factor II) & elevated anticardiolipins.

To answer your question, i'm constantly scared that the blood thinners might not be enough, and in my case the Lovenox appears to be causing some liver damage - that's now being monitored and if it gets worse not sure what next step will be. Lovenox is known for causing temporary, usually reversible, liver issues but in my case the results are more elevated than they would have anticipated given the short timeframe i've been on it.

But my understanding is that normally the bloodthinners work just fine and with a history of clot issue already i'd imagine they'll track you closely and adjust dosage level upwards if they're concerned. I wouldn't let the worry about them scare you off of TTCing. Good luck to you!!

Sharpay714 August 5th, 2012 05:56 PM

Re: For all the Lovenox/Heparin Mama's out there:
 
Wow, thank you so much ladies! I was starting to think maybe I was the only one. I really appreciate what you told me and yes I've already been talking to DH about changing OB's. The OB's that told me that were not the ones that delivered my son but they are in the same practice as him so I would be seeing them whenever my actual OB couldn't. It's not worth it. I really need someone that's going to support me on this.

Do any of you have filters? I had the vena cava filter put in after the DVT/PE incident.

BTW sorry i misspelled internist lol i love mine, he's kinda quacky bc he's so smart...like a genius but I love him and appreciate how smart he is.

AmyLM August 7th, 2012 08:00 AM

Re: For all the Lovenox/Heparin Mama's out there:
 
No, no filter. I'm not exactly sure why I don't have one. It was such a long time ago and a lot of what happened is pretty fuzzy in my mind. Except the pain of the pe and the short time leading up to it. THAT, i remember clearly.

Sharpay714 August 7th, 2012 01:09 PM

Re: For all the Lovenox/Heparin Mama's out there:
 
Same here a lot was fuzzy and the time in the hospital/surgery and stuff was fuzzy but the pain and time leading up to that I clearly remember to. How are you doing Amy? Congrats on having another baby :)

MeganMomof5 August 7th, 2012 05:28 PM

Re: For all the Lovenox/Heparin Mama's out there:
 
i've never had a DVT, but I have a clotting disorder...I had 3 pregnancy losses, 1 was a stillbirth...I'm now on my 2nd pregnancy with lovenox...It does scare me that the lovenox will not be enough...I was on 60mg twice a day last time I was pregnant and now they have me on 60mg once a day...I didn't have any complications from lovenox/heparin, and I had a healthy baby last time, so i'm really hoping for the same again...I wouldn't let it stop me from having a baby, unless I was told it was impossible...I know lots of people go on to have healthy children while on blood thinners....good luck!!

AmyLM August 7th, 2012 06:08 PM

Re: For all the Lovenox/Heparin Mama's out there:
 
I'm doing great! Just getting over the first trimester. I had been pretty nauseous and exhausted but for the last couple of weeks have been feeling much better with just a few bouts of feeling yucky. I'm still pretty tired but, I guess that's to be expected with 2 toddlers at home. I take full advantage of their naptimes!

Megan, for both of my first 2 pregnancies, I was on 60mg once a day. Now, I'm on 40mg once a day. Different doctors have different opinions on how to treat. I don't mind being on more, I just hate 2 shots a day.

chen75 August 12th, 2012 07:49 PM

Re: For all the Lovenox/Heparin Mama's out there:
 
My situation was just a little different. My first pregnancy ended at 27wks due to pre-eclampsia. My son was is now 4yrs old, healthy. Anyway, I became pregnant with my second last yr August and due to what had happened, my OB put me on levonorgestrel injection once a dAy. It helped me carry to full term with no complications! And I did also have to take it 6 wks after.

emsketch August 16th, 2012 03:08 PM

Re: For all the Lovenox/Heparin Mama's out there:
 
Hi Sharpay! I am a Lovenox mommy too. I am not pregnant, but I have had two successful, fairly unevenful pregnancies with Lovenox. I had a history of PE, DVT and a clotting disorder. Once I got out of the first trimester I was not scared. Maybe it is because I have been on blood thinners for so long. I was scared of an early loss because I have suffered two of those, but once I entered the 2nd trimester I was fine. I guess that there was maybe a lingering fear in the back of my head, just knowing what could happen, but it was not in the forefront of my thoughts.

Crystal Lynn August 20th, 2012 07:31 PM

Re: For all the Lovenox/Heparin Mama's out there:
 
Hi ladies, I just joined this forum today and I'm happy I found all of you. I have never been pregnant, no miscarriages etc. But I have an anti-thrombin III deficiency (my blood clots too much) and a history of a PE 7 yrs ago when I was 22, which is the reason they found out I had a deficiency. Since then I am on life long anticoagulation & I have always been told I will need to be on Lovonox if I ever get pregnant. My bf and I plan on getting married next year, but knowing I will already be high risk, I don't really want to wait any longer to ttc because I don't want to end up with additional high risks due to age and I am already worried we will have a hard time ttc since we have not prevented for the last 4 yrs (not trying, not preventing).

So I had a preconception appt with a high risk ob last week who told me that many women only need Lovonox in the 1st & 3rd trimester but not the 2nd. But that I will need it the entire time, which I'm ok with that because it's worth it. Then she told me there is a very low percentage of women who can form clots on Lovonox during pregnancy but it is very rare. However, then she told me that because my father has formed clots on IV heparin in the hospital, I could possibly be among that small percentage and now they don't know if even Lovonox will be enough for me. She told me I might have to stay on Coumadin throughout my pregnancy but it could potentially cause birth defects... but that the risk of having me on Lovonox could be greater than the Coumadin. She said I need to see my hematologist to come up with a plan before we can ttc.

I'm so worried and scared and I want to have a baby so badly. I don't want to give up ttc and I'm terrified of having to be on Coumadin the whole time if that is what the end result becomes. I'm hoping my hematologist will have some ideas and some kind of hope for us. I also can't help but think, am I being selfish to ttc? What if I do have a baby and they do end up with a birth defect from this? Or if I have a girl & she goes through what I have to go through now? I have so many thoughts going through my head and I have been so emotional about this. I have no one to talk to that has ever been through something like this or understands what I am going through. My father most likely has the same thing as me, but he never had to deal with pregnancy obviously.. and my mother is perfectly healthy. My parents told me maybe I should consider adoption. Not that I am ruling that out, but I really want one of my own. I'm very thankful to have such a supportive bf who is ok no matter what happens. But I would be devistated if I can't have any children.

I'm not sure exactly what answers I'm looking for, but it would be nice to have someone to talk to that understands what I'm going through. And for the ladies who are pregnant, I'd love to keep hearing about how your pregnancies are going if you get on here enough & feel like dropping a comment... it cheers me up knowing you ladies are having happy & healthy pregnancies, and it makes me feel like I might still have some hope too. Also, knowing how your pregnancy is going might help calm my nerves a little if I ever do get pregnant and I have a better idea of what to expect. No one knows better than the women who are actually going through it themselves. Sorry for being so long winded. I apparently had more to say that I originally thought I was going to. But now you know my story, and any feedback, questions, opinions, etc would be appreciated and welcomed. I wish all of you the best of luck ttc and hope you all have happy & healthy pregnancies :)

AmyLM August 20th, 2012 11:26 PM

Re: For all the Lovenox/Heparin Mama's out there:
 
Hi Crystal and welcome! I had a dvt and pe 10 years ago. I have factor V Leiden which makes my blood clot too much. The clots all happened before I ever even thought about babies. I was told the same as you that I would have to be on lovenox or heparin during pregnancy. I am pregnant with my third baby and I have 2 daughters. I also take coumadin when I am not pregnant. In between my daughters my doctor told me that whenever I got pregnant to let him know and he would switch me to lovenox. I got pregnant and miscarried. I then read the medication information on coumadin that the manufacturer provides. It says that if a woman becomes pregnant while on coumadin they suggest termination of he pregnancy because of the defects it causes. So when I ttc I start lovenox before getting pregnant. Now I have never clotted while on anticoagulants so I can only speak from my experience. I can tell you I would not take coumadin at all during a pregnancy. I know that one of the girls here got pregnant while on coumadin and her baby is fine. She was only on it during the very beginning though. I would definitely talk to a hematologist first and maybe even another ob or 2 and get as much info as you can and make the best educated decisions you can. Good for you for doing this now. I wasn't actually diagnosed with anything at the time of my clots. The factor v wasn't found until I was pregnant and I didn't know anything and had to learn as I went along. I found a new doctor and when I met him the first time he told me his wife has a clotting disorder so he's really educatedon it. I just chose him at random.

L-SBB August 21st, 2012 02:29 PM

Re: For all the Lovenox/Heparin Mama's out there:
 
I figured i should drop in & update that even though our pregnancy is ending (we had great hbs through the 8wk appt, but at 10wks lost the hb and i'm now waiting to m/c) I had mentioned that I was having liver problems that we hoped were Lovenox related. We have confirmed through a subsequent test (only 3 days off the Lovenox) that my LFTs have all returned to normal and the bad results were all Lovenox caused...just wanted to share that in case anyone else flags a bad LFT result that at least in our cause it was very quickly reversed to normal once off the Lovenox.

Good luck to everyone else, hopefully I'll be back in a few months once we can TTC again.

Dee Darling 3 August 21st, 2012 05:18 PM

Re: For all the Lovenox/Heparin Mama's out there:
 
:hug: Lara. I hope you get your rainbow baby.

Crystal Lynn August 21st, 2012 07:30 PM

Re: For all the Lovenox/Heparin Mama's out there:
 
L-SBB, I'm so sorry to hear that. I am glad to hear that your LFT's returned to normal though, and that there was no permanent damage to your liver. I hope when you conceive again you have a very smooth & healthy pregnancy :smile: Good luck to you, and I'm so sorry for your loss.

Crystal Lynn August 21st, 2012 08:27 PM

Re: For all the Lovenox/Heparin Mama's out there:
 
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 :smile:

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.

AmyLM August 22nd, 2012 03:30 PM

Re: For all the Lovenox/Heparin Mama's out there:
 
Oh, jeez! That must have been nice to hear that you have the WORST clotting factor. Thanks, Doc! But, yeah, your'e right, they're all bad and I would never wish this on anyone. I hope my girls and my brother's girls don't inherit this. I am very lucky to have gotten my doctor, just by chance! I only chose him because I could pronounce his name. How random is that? lol He is awesome and, thankfully, his wife has never had a clot but her aunt, sister and someone else have all died from it so, yeah, he's close and personal with it and very up to date with it. LOVE him!

Lovenox is expensive. Luckily, my co pay is only $100. Only. And that's for a whole month. Otherwise, if I were to pay cash, it would be closer to $2400 for a month's supply. I think that since I am on Coumadin for life and because of the birth defects and high risk of m/c, plus I already has a m/c on it, my insurance company doesn't even bat an eye at approving it. Have you talked to the pharmacy portion of you insurance company? My doctor always has to submit a prior authorization but it's never been denied. They approved it for ttc for 4 months for me and I got pregnant on the last month of it! I really think that if they didn't approve it and you had to be on Coumadin for ttc, and your baby had a birth defect, they could have quite a lawsuit on their hands since you cannot be without anticoagulants. If Heparin would work for you for the whole pregnancy, I would go with that, if possible. I switch to Heparin at 36 weeks and then back to lovenox for 6 weeks post partum. I just cannot imagine a doctor telling me I had to be on Coumadin for any of my pregnancy, let alone the entire time.

You're welcome! You can pm me or find me here if you have any questions at all! I don't know anyone IRL that has this so, it's always nice to talk to someone about it and/or help someone through it!

I'm 15 weeks tomorrow! yay! We just found out that we are having a boy! We have 2 girls already and we are ecstatic!! I haven't noticed anything unusual as far as aches and pains due to the FVL. At least, I don't associate them with it. I usually associate any aches and pains with my age. I'm 36. lol Other than the constant bruised abdomen, there really isn't any noticeable difference....I think. Someone else may have something different to say about that and I just haven't picked up on any of it.

Crystal Lynn August 23rd, 2012 09:15 PM

Re: For all the Lovenox/Heparin Mama's out there:
 
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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